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A Framework for Children that are Bereaved
Caring for a dying parent andor
Living with a life threatening illness
Bev Sebastian (Director) amp Val Maasdorp (Counselling amp Support Services) Zimbabwe
1 Island Hospice amp Healthcare
2 Background amp context (25)
3 Clinical Model amp framework for Islandrsquos Childrenrsquos Programme (25)
4 Questions (10)
Outline of Presentation
bull Established in 1979 as the first hospice in Africa
bull Models
ndash Home based care
ndash Hospital based care
ndash Rural amp community outreach
ndash Road side services
ndash Therapeutic amp comprehensive bereavement care
ndash Capacity building
Recommended to be a WHO palliative care demonstration site for region
Background Island
Service Delivery 2016
PATIENTS SEEN MALE FEMALE TOTAL
ADULTS 3 903 8 088 11 991
CHILDREN 514 2 047 2 561
TOTAL 4 417 10 135 14 552
Background Zimbabwe
bull Population of 14 million amp 1 in 60 in need of PC (WHO) bull Right to health enshrined in the constitution but health
system fragile bull MMR of 614 deaths per 100000 bull 15 HIV prev rate Cervical cancer on the rise (4 women
a day die from CC) bull 98 drugs funded by donors (GF PEPFAR EU DFID etc) bull 90 need med insurance bull 6 pillars of functional health system weakened
Continuum of (Palliative) care in the developing world
Death
Disease-oriented care
Supportive amp Palliative Care
Impacts on Individual
Family Community
Care of orphans
Bereavement Care
Diagnosis Island Care
Primary Health Care amp Specialist Care
Adapted from WHO Defilippi Gwyther 2002
Year Ref
Child headed households 100 000 2012 UNICEF
Orphaned due to HIVAIDS 890 000 2012 UNICEF
Orphaned all causes 1 200 000 2012 UNICEF
Orphaned due to AIDS 450 000 2015 UNAIDS
httpswwwuniceforginfobycountryzimbabwe_statisticshtml httpswwwuniceforgzimbabwereallives_7849html httpwwwunaidsorgenregionscountriescountrieszimbabwe
OrphansCHH Data
Need for Palliative Care for Children Three Country Report South Africa Kenya amp
Zimbabwe
bull 2013 UNICEF International Childrenrsquos Palliative Care Network (ICPCN) collaborative research quantify need for childrenrsquos PC in 3 sub Saharan countries ndash Kenya South Africa amp Zimbabwe
bull httpwwwicpcnorgicpcn-unicef-research
bull httpwwwicpcnorgwp-contentuploads201402Palliative-Care_Three-Country-Reportpdf
Estimated population need for CPC
Country
Generalized CPC Need
Specialised CPC Need
Population
Rate per 10000 Children
Kenya 660717 264102 068 12005
S Africa 801155 304441
062
15192
Zimbabwe 312046 117231 091 18063
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
1 Island Hospice amp Healthcare
2 Background amp context (25)
3 Clinical Model amp framework for Islandrsquos Childrenrsquos Programme (25)
4 Questions (10)
Outline of Presentation
bull Established in 1979 as the first hospice in Africa
bull Models
ndash Home based care
ndash Hospital based care
ndash Rural amp community outreach
ndash Road side services
ndash Therapeutic amp comprehensive bereavement care
ndash Capacity building
Recommended to be a WHO palliative care demonstration site for region
Background Island
Service Delivery 2016
PATIENTS SEEN MALE FEMALE TOTAL
ADULTS 3 903 8 088 11 991
CHILDREN 514 2 047 2 561
TOTAL 4 417 10 135 14 552
Background Zimbabwe
bull Population of 14 million amp 1 in 60 in need of PC (WHO) bull Right to health enshrined in the constitution but health
system fragile bull MMR of 614 deaths per 100000 bull 15 HIV prev rate Cervical cancer on the rise (4 women
a day die from CC) bull 98 drugs funded by donors (GF PEPFAR EU DFID etc) bull 90 need med insurance bull 6 pillars of functional health system weakened
Continuum of (Palliative) care in the developing world
Death
Disease-oriented care
Supportive amp Palliative Care
Impacts on Individual
Family Community
Care of orphans
Bereavement Care
Diagnosis Island Care
Primary Health Care amp Specialist Care
Adapted from WHO Defilippi Gwyther 2002
Year Ref
Child headed households 100 000 2012 UNICEF
Orphaned due to HIVAIDS 890 000 2012 UNICEF
Orphaned all causes 1 200 000 2012 UNICEF
Orphaned due to AIDS 450 000 2015 UNAIDS
httpswwwuniceforginfobycountryzimbabwe_statisticshtml httpswwwuniceforgzimbabwereallives_7849html httpwwwunaidsorgenregionscountriescountrieszimbabwe
OrphansCHH Data
Need for Palliative Care for Children Three Country Report South Africa Kenya amp
Zimbabwe
bull 2013 UNICEF International Childrenrsquos Palliative Care Network (ICPCN) collaborative research quantify need for childrenrsquos PC in 3 sub Saharan countries ndash Kenya South Africa amp Zimbabwe
bull httpwwwicpcnorgicpcn-unicef-research
bull httpwwwicpcnorgwp-contentuploads201402Palliative-Care_Three-Country-Reportpdf
Estimated population need for CPC
Country
Generalized CPC Need
Specialised CPC Need
Population
Rate per 10000 Children
Kenya 660717 264102 068 12005
S Africa 801155 304441
062
15192
Zimbabwe 312046 117231 091 18063
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
bull Established in 1979 as the first hospice in Africa
bull Models
ndash Home based care
ndash Hospital based care
ndash Rural amp community outreach
ndash Road side services
ndash Therapeutic amp comprehensive bereavement care
ndash Capacity building
Recommended to be a WHO palliative care demonstration site for region
Background Island
Service Delivery 2016
PATIENTS SEEN MALE FEMALE TOTAL
ADULTS 3 903 8 088 11 991
CHILDREN 514 2 047 2 561
TOTAL 4 417 10 135 14 552
Background Zimbabwe
bull Population of 14 million amp 1 in 60 in need of PC (WHO) bull Right to health enshrined in the constitution but health
system fragile bull MMR of 614 deaths per 100000 bull 15 HIV prev rate Cervical cancer on the rise (4 women
a day die from CC) bull 98 drugs funded by donors (GF PEPFAR EU DFID etc) bull 90 need med insurance bull 6 pillars of functional health system weakened
Continuum of (Palliative) care in the developing world
Death
Disease-oriented care
Supportive amp Palliative Care
Impacts on Individual
Family Community
Care of orphans
Bereavement Care
Diagnosis Island Care
Primary Health Care amp Specialist Care
Adapted from WHO Defilippi Gwyther 2002
Year Ref
Child headed households 100 000 2012 UNICEF
Orphaned due to HIVAIDS 890 000 2012 UNICEF
Orphaned all causes 1 200 000 2012 UNICEF
Orphaned due to AIDS 450 000 2015 UNAIDS
httpswwwuniceforginfobycountryzimbabwe_statisticshtml httpswwwuniceforgzimbabwereallives_7849html httpwwwunaidsorgenregionscountriescountrieszimbabwe
OrphansCHH Data
Need for Palliative Care for Children Three Country Report South Africa Kenya amp
Zimbabwe
bull 2013 UNICEF International Childrenrsquos Palliative Care Network (ICPCN) collaborative research quantify need for childrenrsquos PC in 3 sub Saharan countries ndash Kenya South Africa amp Zimbabwe
bull httpwwwicpcnorgicpcn-unicef-research
bull httpwwwicpcnorgwp-contentuploads201402Palliative-Care_Three-Country-Reportpdf
Estimated population need for CPC
Country
Generalized CPC Need
Specialised CPC Need
Population
Rate per 10000 Children
Kenya 660717 264102 068 12005
S Africa 801155 304441
062
15192
Zimbabwe 312046 117231 091 18063
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Service Delivery 2016
PATIENTS SEEN MALE FEMALE TOTAL
ADULTS 3 903 8 088 11 991
CHILDREN 514 2 047 2 561
TOTAL 4 417 10 135 14 552
Background Zimbabwe
bull Population of 14 million amp 1 in 60 in need of PC (WHO) bull Right to health enshrined in the constitution but health
system fragile bull MMR of 614 deaths per 100000 bull 15 HIV prev rate Cervical cancer on the rise (4 women
a day die from CC) bull 98 drugs funded by donors (GF PEPFAR EU DFID etc) bull 90 need med insurance bull 6 pillars of functional health system weakened
Continuum of (Palliative) care in the developing world
Death
Disease-oriented care
Supportive amp Palliative Care
Impacts on Individual
Family Community
Care of orphans
Bereavement Care
Diagnosis Island Care
Primary Health Care amp Specialist Care
Adapted from WHO Defilippi Gwyther 2002
Year Ref
Child headed households 100 000 2012 UNICEF
Orphaned due to HIVAIDS 890 000 2012 UNICEF
Orphaned all causes 1 200 000 2012 UNICEF
Orphaned due to AIDS 450 000 2015 UNAIDS
httpswwwuniceforginfobycountryzimbabwe_statisticshtml httpswwwuniceforgzimbabwereallives_7849html httpwwwunaidsorgenregionscountriescountrieszimbabwe
OrphansCHH Data
Need for Palliative Care for Children Three Country Report South Africa Kenya amp
Zimbabwe
bull 2013 UNICEF International Childrenrsquos Palliative Care Network (ICPCN) collaborative research quantify need for childrenrsquos PC in 3 sub Saharan countries ndash Kenya South Africa amp Zimbabwe
bull httpwwwicpcnorgicpcn-unicef-research
bull httpwwwicpcnorgwp-contentuploads201402Palliative-Care_Three-Country-Reportpdf
Estimated population need for CPC
Country
Generalized CPC Need
Specialised CPC Need
Population
Rate per 10000 Children
Kenya 660717 264102 068 12005
S Africa 801155 304441
062
15192
Zimbabwe 312046 117231 091 18063
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Background Zimbabwe
bull Population of 14 million amp 1 in 60 in need of PC (WHO) bull Right to health enshrined in the constitution but health
system fragile bull MMR of 614 deaths per 100000 bull 15 HIV prev rate Cervical cancer on the rise (4 women
a day die from CC) bull 98 drugs funded by donors (GF PEPFAR EU DFID etc) bull 90 need med insurance bull 6 pillars of functional health system weakened
Continuum of (Palliative) care in the developing world
Death
Disease-oriented care
Supportive amp Palliative Care
Impacts on Individual
Family Community
Care of orphans
Bereavement Care
Diagnosis Island Care
Primary Health Care amp Specialist Care
Adapted from WHO Defilippi Gwyther 2002
Year Ref
Child headed households 100 000 2012 UNICEF
Orphaned due to HIVAIDS 890 000 2012 UNICEF
Orphaned all causes 1 200 000 2012 UNICEF
Orphaned due to AIDS 450 000 2015 UNAIDS
httpswwwuniceforginfobycountryzimbabwe_statisticshtml httpswwwuniceforgzimbabwereallives_7849html httpwwwunaidsorgenregionscountriescountrieszimbabwe
OrphansCHH Data
Need for Palliative Care for Children Three Country Report South Africa Kenya amp
Zimbabwe
bull 2013 UNICEF International Childrenrsquos Palliative Care Network (ICPCN) collaborative research quantify need for childrenrsquos PC in 3 sub Saharan countries ndash Kenya South Africa amp Zimbabwe
bull httpwwwicpcnorgicpcn-unicef-research
bull httpwwwicpcnorgwp-contentuploads201402Palliative-Care_Three-Country-Reportpdf
Estimated population need for CPC
Country
Generalized CPC Need
Specialised CPC Need
Population
Rate per 10000 Children
Kenya 660717 264102 068 12005
S Africa 801155 304441
062
15192
Zimbabwe 312046 117231 091 18063
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Continuum of (Palliative) care in the developing world
Death
Disease-oriented care
Supportive amp Palliative Care
Impacts on Individual
Family Community
Care of orphans
Bereavement Care
Diagnosis Island Care
Primary Health Care amp Specialist Care
Adapted from WHO Defilippi Gwyther 2002
Year Ref
Child headed households 100 000 2012 UNICEF
Orphaned due to HIVAIDS 890 000 2012 UNICEF
Orphaned all causes 1 200 000 2012 UNICEF
Orphaned due to AIDS 450 000 2015 UNAIDS
httpswwwuniceforginfobycountryzimbabwe_statisticshtml httpswwwuniceforgzimbabwereallives_7849html httpwwwunaidsorgenregionscountriescountrieszimbabwe
OrphansCHH Data
Need for Palliative Care for Children Three Country Report South Africa Kenya amp
Zimbabwe
bull 2013 UNICEF International Childrenrsquos Palliative Care Network (ICPCN) collaborative research quantify need for childrenrsquos PC in 3 sub Saharan countries ndash Kenya South Africa amp Zimbabwe
bull httpwwwicpcnorgicpcn-unicef-research
bull httpwwwicpcnorgwp-contentuploads201402Palliative-Care_Three-Country-Reportpdf
Estimated population need for CPC
Country
Generalized CPC Need
Specialised CPC Need
Population
Rate per 10000 Children
Kenya 660717 264102 068 12005
S Africa 801155 304441
062
15192
Zimbabwe 312046 117231 091 18063
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Year Ref
Child headed households 100 000 2012 UNICEF
Orphaned due to HIVAIDS 890 000 2012 UNICEF
Orphaned all causes 1 200 000 2012 UNICEF
Orphaned due to AIDS 450 000 2015 UNAIDS
httpswwwuniceforginfobycountryzimbabwe_statisticshtml httpswwwuniceforgzimbabwereallives_7849html httpwwwunaidsorgenregionscountriescountrieszimbabwe
OrphansCHH Data
Need for Palliative Care for Children Three Country Report South Africa Kenya amp
Zimbabwe
bull 2013 UNICEF International Childrenrsquos Palliative Care Network (ICPCN) collaborative research quantify need for childrenrsquos PC in 3 sub Saharan countries ndash Kenya South Africa amp Zimbabwe
bull httpwwwicpcnorgicpcn-unicef-research
bull httpwwwicpcnorgwp-contentuploads201402Palliative-Care_Three-Country-Reportpdf
Estimated population need for CPC
Country
Generalized CPC Need
Specialised CPC Need
Population
Rate per 10000 Children
Kenya 660717 264102 068 12005
S Africa 801155 304441
062
15192
Zimbabwe 312046 117231 091 18063
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Need for Palliative Care for Children Three Country Report South Africa Kenya amp
Zimbabwe
bull 2013 UNICEF International Childrenrsquos Palliative Care Network (ICPCN) collaborative research quantify need for childrenrsquos PC in 3 sub Saharan countries ndash Kenya South Africa amp Zimbabwe
bull httpwwwicpcnorgicpcn-unicef-research
bull httpwwwicpcnorgwp-contentuploads201402Palliative-Care_Three-Country-Reportpdf
Estimated population need for CPC
Country
Generalized CPC Need
Specialised CPC Need
Population
Rate per 10000 Children
Kenya 660717 264102 068 12005
S Africa 801155 304441
062
15192
Zimbabwe 312046 117231 091 18063
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Estimated population need for CPC
Country
Generalized CPC Need
Specialised CPC Need
Population
Rate per 10000 Children
Kenya 660717 264102 068 12005
S Africa 801155 304441
062
15192
Zimbabwe 312046 117231 091 18063
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
2013 Estimated Children reached
bull Enormous gap between need amp Provision of service
bull Based on the statistics provided by NGOrsquos hospices PC orgs and public facilities
Country Reached of need
Kenya 545 lt1
S Africa 14501 ~5
Zimbabwe 5438 ~5
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Zimbabwe PC Challenges
bull Essential palliative care medications available
ndash However reluctance to prescribe ampor administer opioids cited as major barrier to access to comprehensive pain management
ndash Lack of appropriate pain medication formulations for children
bull PC not fully integrated into National Health system
ndash Funding for PC services major constraint to achieving adequate reach amp quality
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
bull A reduction in experiences of isolation amp anxiety in bereaved children amp other vulnerable children (including YCrsquos) leading to an improvement in psychosocial amp emotional wellbeing
bull Improved coping ability amp resilience of young carers leading to a reduction in vulnerability to infection amp improvement in opportunities for personal development
Big Lottery Island ldquoCollaboraterdquo project 201316
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Contributed to increased coping
bull During FGDs children reported ndash Reduced feelings of isolation
ndash Reduction in stigma compared to 2 years prior
bull Able to identify referral networks
bull CHBC usually first ones mentioned followed by CCW and schoolteachers
Big Lottery ldquoCollaboraterdquo project Assessment amp Evaluation
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Craig McClure Chief of HIV and AIDS UNICEF Headquarters
bull ldquo When children suffer from chronic or fatal illness it is their right to be free of pain amp to die with dignity Sadly all too often this is not the case The 3 Country study is an important first step to better understand the need amp gap in coverage of palliative care for childrenrdquo
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Clinical
Implementation
of Islands
Childrenrsquos
Programme
Bereavement Young Carers Paediatric palliative Care
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Challenges
bull Level of bereavement in Zimbabwe
bull Lack of health welfare system initiatives
bull Collapse of extended family
bull Poverty- having these children access services
Need to -
bull Be economic in terms of $ amp time
bull Framework utilizes any opportunity to reach children ndash Guardian support
ndash Community collaborations
ndash Capacity Building
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Childrenrsquos Psychosocial Care
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Bereavement
bull Grief not linear progression
bull Experience interpreted amp reconfigured through ongoing reflection as child agesmatures
bull Multiple losses
bull Research Mental health prognosis ndash Adult depression etc
bull Models for our context
bull Stroebe amp Schut
Dual Purpose Oscillation
Model
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Dual Purpose Model
DPMOscillation Model (Stroebe et al)
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
2 Types of Stresses
Loss Oriented Coping strategy Stress directly associated with loss
of person bull Dealing with loss itself (eg rumination amp longing for
person reliving memories crying)
Restoration oriented coping strategy Stress re issues resulting from the
loss bull Dealing with secondary
consequences of the loss bull Attending to life changes
bull Adjust to substantial changes that co occur - patterns of social interaction status change etc
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Childrenrsquos bereavement Group
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
ldquoTalking to my dead father by writing a letter was very helpful and made a
big differencerdquo
Writing lettershelliphellip
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Guardian Support Group
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Young Carers (YCrsquos)definition
bull lt18 provide care to family member
bull carry out significant caring tasks bull assume level of responsibility usually associated with adult bull patient often parent = disabled chronic illness condition that needs care
support supervision bull lack relevant skills Becker S (2000)
bull World wide phenomena bull In Zimbabwe many YCrsquos are often themselves HIV+
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
YCrsquos research in UK
bull Most significant Factors influence whether
children become carers is availability amp effectiveness of health amp social care support for illdisabled relative
bull 4 of UK 18-24 year olds have regularly cared for illdisabled relative during childhood (NSPCC Cawson 2002)
bull 1 of all family carers in Scotland are YCrsquos(Scottish Executive 2001)
bull CARERS UK by Chris Dearden amp Saul Becker 2002
bull httpwwwlboroacukmicrositessocialsciencesycrgyoungCarersDownloadyceduc5B15Dpdf
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Island amp YCrsquos
bull Community partners Island staff amp CHBC identified children amp adolescents = caring for ill family member
bull Need-Meaningful practicalpsychosocialmaterial support bull YCrsquos Programme - holistic framework
ndash access to support from peers amp trained CHBC adults ndash address their losses ndash build coping mechanisms ndash learn how to provide adequate care ndash referral on to relevant agencies ndash Identify manage amp refer YCrsquos health issues ndash Follow up support from Island staff
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Community Volunteer training and mentorship
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
YOUNG
CARERS
Challenges faced by YCrsquoshellip
Access to Education
Health amp
Nutritional
Needs
Psychosocial
Wellbeing
Lack of Adequate KnowledgeSkills to
Care for the ill
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
The Life of a YC Education
Delayed enrolment drop out lack of school fees
Absenteeism amp lack of concentration
Deprived of child hood
Play
Social life revolves around patient -gt Isolation
Not equipped with skills to care for person with life threatening illness
Challenges of providing physical care PLUS trauma
associated with impending loss of loved one
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Life of YC
May sell propertylivestock begprostitution to meet clinichospital medicationfood requirements
Issues of
Birth certificates
Nutrition
universal precautions
stigma
bull Minimal support in care role
ndash Associated with breakdown of extended family
bull Against childrenrsquos rights but due to circumstances = ldquoacceptablerdquo
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
lsquoSometimes there will be no pain killers and she will be cryingrsquo (14 yr old girl caring for mother )
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
YC ldquoworkshoprdquo Programme includes
Adapted from Childrenrsquos Bereavement groups feedback from children amp global best practices
bull Family drawings bull Patient Communication bull Discussion on losses bull Poems amp Drama bull Play amp games bull Workinglinking with community
stakeholders (CHBC attend workshops)
bull Nutrition bull HIV facts bull General hygiene amp protecting
yourself bull Managing pain bull Signs of approaching death bull Personal experiences amp biggest
challenges
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
bull
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
YCrsquos struggle with intimate care
provision bull SSQ -gt 80 YCrsquos assess psychosocial
wellbeing (BL 2015)
775 of YCrsquos had some psychosocial disorder
25 of YCrsquos had severe psychosocial
disorder
bull Analysis = majority of YCrsquos sometimes always feel depressed tired
bull Unable to concentrate or make decisions
bathing feeding turning lifting amp carrying patient
attending to nutritional
needs changing clothes cleaning toilet diarrhoea amp
vomit collecting medication amp
ensuring it is taken wound care amp giving
medication
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
YCrsquos needing Physical Palliative Care
(PC)
Young primary carers collect medication Island CPC clinic Mufakose
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
WHO Definition of Palliative Care for
Children (summary)
bull Active total care ndash plus family support
ndash begins diagnosis
bull Evaluate amp alleviate total distress
bull Effective PC = broad multidisciplinary approach ndash includes family amp community
bull Successfully implemented even limited resources
bull Provided wherever child amp family choose to be
ndash home hospital etc
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Whatrsquos different about PC for Children
bull Children are uniquehellip not small adults needs amp responses = different bull Effective care requires understanding difference bull PC for children involves partnership between
child familyguardianland lord teachers health care professionals community based volunteers
bull Child should participate to fullest extent possible
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Pain Management in Children
bull Pain is what child says hurts bull Paediatric formulation NB
bull FACT Children feel pain same way adults amp have same pain management needs
bull Child needs to trust those caring for them
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
YCrsquos Palliative Care amp Adherence
Disclosure issues Taking ARVs can be confusing
ill parent under strain with own treatment ARVs unable to monitor YC adherence
Overwhelmed Pill fatigue
lsquoIt is difficult caring when there is nothing to eatrsquo (12 yr old boy caring for granny)
Thank you for your interest
wwwislandhospicecare
Thank you for your interest
wwwislandhospicecare
