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INVOLVEVEMENT OF YOUTHS WITH SPINA BIFIDA AND HYDROCEPHALUS IN LIFELONG INTERDISCIPLINARY CARE
Introduc>on Involvement of youth with Spina bifida and hydrocephalus in lifelong interdisciplinary care will ensure that:
Youths have power from within that will enable them to coordinate well with other people in society and
They can come up with new knowledge and ideas (for their wellbeing) that will be maintained and passed on from time to time.
Peer Programs and Supports Groups Through peer programs, exchange programs and support groups youths with SB and HC can:
Discuss and get solutions to their challenges
Such programs can enable young adults to identify their role models, counselors and mentors who can guide them.
Decision Making For a long life interdisciplinary care youth should be involved in decision making on matters that concern them.
This can take up bottom up approach where ideas are drawn from the youths and channeled up to the main stakeholders who are involved in their care
Self Advocacy Youths can be trained on self advocacy tactics: through talking about their condition in different context e.g social and academic.
This will enable them to advocate and lobby for their rights
Furthermore, the public will have enough knowledge which will be for the wellbeing of individuals with SB and HC
Rela>onships Adolescents and young adult with SB and HC should be trained on the type of relationship that will promote healthy development during transition into adulthood. For example; school related, disability related, work related, personal e.t.c
Self care For a sustainable interdisciplinary care young adults can be taught on self care for instance: bladder and bowel management, grooming, keeping fit through suitable exercises among many other activities.
Sexuality Youths with SB and HC should get factual information about their sexuality and reproductive issues. This includes:
Puberty: if precocious (early than usual) Sexual functioning including fertility And psychosexual development: social interaction and self esteem
Conclusion For the above factors to be achieved all stakeholders involved in matters that concern spina bifida and hydrocephalus should approach the cases in real and positive attitude since transition from childhood to adulthood is crucial to every individual’s development and growth.
References Liptak G, (2003) Evidence Based Practice in Spina bifida; Developing a research agenda. Washington DC.
Minnesota Department of Health, (2008) Interdisciplinary Transition Conference. Minnesota
Presentation by: Rebecca Opetsi