EXAMENSARBETE - KANDIDATNIVÅ

VÅRDVETENSKAP MED INRIKTNING MOT OMVÅRDNAD VID AKADEMIN FÖR VÅRD, ARBETSLIV OCH VÄLFÄRD

2020:28

Nurses’ experience of women suffering from urinary incontinence, their associated health needs and provision

of care for these women in Arusha, Tanzania

Andersson Maja Henriksson Julia

Examensarbetets titel:

Nurses’ experience of women suffering from urinary incontinence, their associated health needs and provision of care for these women in Arusha, Tanzania

Författare: Maja Andersson, Julia Henriksson

Huvudområde: Vårdvetenskap med inriktning mot omvårdnad

Nivå och poäng: Kandidatnivå, 15 högskolepoäng

Utbildning: Sjuksköterskeutbildning GSJUK17h

Handledare: Karin Högberg

Examinator: Lena Nordholm ABSTRACT Urinary incontinence (UI) is a worldwide problem with negative consequences on women’s health and day-to-day life. Yet, the problem is partly unexplored and often stigmatized. Thus, the aim of the study was to describe nurses’ experience of women suffering from UI, their associated health needs and provision of care for these women in Arusha, Tanzania. A qualitative study with semi-structured interviews with a convenient sample was an applicable and preferable method to proceed the research. The collected data from eight interviews with nurses from various hospitals formed the foundation of the result, as it was analyzed with an inductive content analysis. The main findings consisted by; the experience of what is making women suffer from UI; the experience of the associated health needs; and the experience of providing care to the affected women. The result in this study highlighted how the nurse responded to the affected women’s needs. Though, it indicated that the women’s health needs might go beyond the possibilities of care a nurse can provide. The health needs were often more complex and profound than the health care could manage. Thus, this emphasized the importance of identification and caring for these women. Giving that the nurse role was to give support, both physically and mentally, and to increase the knowledge among women, but also on a societal level in Tanzania.

Keywords: Nurse experience, urinary incontinence, support, health education

TABLE OF CONTENT

INTRODUCTION _____________________________________________________ 1BACKGROUND ______________________________________________________ 1

Urinary incontinence _______________________________________________________ 1Consequences of urinary incontinence - QOL __________________________________ 1Previous research __________________________________________________________ 1Nurse role ________________________________________________________________ 2The situation in Tanzania ___________________________________________________ 2To combat UI – in accordance with the sustainable development goal ______________ 3

THE PROBLEM ______________________________________________________ 3AIM ________________________________________________________________ 3METHOD ____________________________________________________________ 3

Design, context and sample __________________________________________________ 3Data Collection ____________________________________________________________ 4Data Analysis _____________________________________________________________ 5Ethical Consideration ______________________________________________________ 6

RESULT _____________________________________________________________ 6The experience of what is making women suffer from urinary incontinence _________ 6The experience of the associated health needs ___________________________________ 7

To identify the women’s different health needs _________________________________________ 7To see the women suffer in silence __________________________________________________ 8To understand the effects on the mental stage __________________________________________ 9To meet the consequences of hiding UI ______________________________________________ 10

The experience of providing care to the affected women _________________________ 11To offer and provide medical treatment ______________________________________________ 11To support the woman ___________________________________________________________ 12To increase the women’s knowledge through health education ___________________________ 13To prevent UI and provide information ______________________________________________ 14

DISCUSSION _______________________________________________________ 15Methodological considerations ______________________________________________ 15Discussion of the findings __________________________________________________ 16

Nurses’ experience of women living with UI _________________________________________ 16The importance of the nurse role in care for women with UI _____________________________ 17Nurses’ perspective of cultural diversities and access to health care ________________________ 19

CONCLUSION ______________________________________________________ 19REFERENCES ______________________________________________________ 21APPENDICES _______________________________________________________ 24

Appendix 1 - Participant information and consent agreement ____________________ 24

Appendix 2 - Question Guide _______________________________________________ 26

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INTRODUCTION

Millions of people, mostly women, all over the world are struggling with UI and its effects on their day-to-day life (Hayder & Schnepp 2010). UI and its effects is a subject that is partly unexplored and often stigmatized. It has negative economic and social impacts on the affected women (Masenga, Shayo, Msuya & Rasch 2019). However, the growing attention on women’s UI has effects on quality of life (QOL), resulted in women realizing the need of help and treatment for their health problems (Tunde, Suran & Jagedisa 2015). Thus, this study is focusing on nurses’ experience of women suffering from UI, their associated health needs and provision of care for these women.

BACKGROUND

Urinary incontinence

UI is defined as a pelvic floor dysfunction and causes involuntary urinary leakage (Gjerde, Rortveit, Muleta & Blystad 2013; Walker & Gunasekera 2011). Yet, there are different kinds of UI such as stress urinary incontinence (SUI), which often occurs with increased abdominal pressure due to sneezing or coughing. Urge urinary incontinence (UUI) is characterized by a sudden feeling of urinating followed by involuntary leakage. Mixed urinary incontinence (MUI) is described as a mix between SUI and UUI (Masenga et al. 2019). The most destructive form of UI is a vaginal fistula, a connection between the bladder and the vagina, causing an uncontrollable flow of urine. Vaginal fistula often occurs due to obstructed labour and is highly prevalent in developing countries (Cowgill, Bishop, Norgaard, Rubens & Gravett 2015). Diverse risk factors of female UI issues might include the patient’s age, the number of births achieved, traumatic births, sexual violence, diabetes mellitus, hysterectomy, urinary tract infections (UTI) (Basak, Kok & Guvenc 2013; Gjerde et al. 2013; Masenga et al. 2019).

Consequences of urinary incontinence - QOL

In a study by Sensoy, Dogan, Ozek and Karaaslan (2013), the result showed that 95,5 percent of the participating women with UI felt a negative impact on their QOL. World Health Organization (1997) defines QOL as each and everyone’s personal view on their life situation in relation to the individual standards, expectations, goals and cultural aspects. UI has a strong negative impact on women’s social and cultural contexts, it also affects their partner relationships (Hayder & Schnepp 2010). The feeling of shame due to leakage and fear of bad smell inhibit women in their daily life (Gjerde et al. 2013). Though UI is not a condition that threatens lives it certainly affects the mental health, sexual function and without a doubt the general QOL (Basak, Kok & Guvenc 2013).

Previous research

According to Barageine, Beyeza-Kashesya, Byamugisha, Tumwesigye, Almroth, and Faxelid (2015) there is an uncertainty of the number of women affected by genital fistula, though estimated prevalence reaches 2-3 million women with additional 50,000-100,000 cases per year. Women in low-income contexts are particularly affected and

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make it a public health problem. Other studies from developing countries show a prevalence of 10-25 percent of women with UI seek medical help. The majority of women sought help at hospitals gynaecology ward and the reason for the help-seeking were more aggravated symptoms (Adedokun, Morhason-Bello, Ojengbede, Okonkwo & Kolade 2012; Madombwe & Knight 2010).

A certain amount of research has been made on vaginal fistula and its consequences with urine leakage, giving that women had a feeling of low self-esteem, felt anxiety and suffered from depression (Söderbäck, Wilhelmsson & Häggström-Nordin 2012). According to Baragaine et al. (2015) there is a need of further qualitative studies regarding the experience of women suffering from urinary leakage and its impacts on their daily life. There is a lack of studies investigating the perspective of how women manage their situation, mentally, physically and in accordance with health care. Irrespective of what is causing UI, it has negative effects on women’s life in all aspects. Hence, UI impacts the women mentally, physically and economically. This lines with the study by Gjerde et al. (2013), given how devastating different forms of incontinence can affect women’s life in low-income contexts, the problem has still been given too little notice. It has been observed that current research in the field includes women’s experience of UI. Yet, studies on nurses’ experience of providing care in relation to UI seem to be very absent.

Nurse role According to International Council of Nurses (2020c), a nurse should provide care to all kinds of illness, disabled and dying people. The key of the nurse role is to care for individuals at all ages, assist them in performing actions leading to wellbeing and to assess their health needs. Nursing is a part of the health care system and entails raise awareness of health and illness. In the International Council of Nurses (2020b) there is million of nurses worldwide represented through more than 130 national nurses’ associations. Tanzania national nurses association is one of the members (International Council of Nurses 2020a).

The situation in Tanzania

According to Masenga et al. (2019) UI is a problem in Tanzania and the prevalence of any type of urine incontinence reaches 42 percent. The United Republic of Tanzania is constituted of a part of Sub-Saharan Africa’s mainland and the island of Zanzibar (Nationalencyklopedin n.d). Considered by the United Nations Development Programme (2018) Tanzania has a low Human Development Index and therefore is classified as a developing country. The socioeconomic standard is low and only 50 percent of the inhabitants have access to clean water. Nationalencyklopedin (n.d.) address that providing free healthcare for each and everyone of the country population has been the objective for the Tanzanian government. However, due to economic problems this goal has been impossible to achieve. In addition, a failure in delivering health care has occurred because of the lack of health care workers and community care spaces for the citizens. According to Gjerde et al. (2013) there is a difference in the experience of health while struggling with UI in high-income countries and low-income countries. For women living in low-income countries, UI and its symptoms have a more

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negative impact on the QOL. For example lack of water and soap and limited access to hospital and health centres complicates the life situation for women with UI.

To combat UI – in accordance with the sustainable development goal

The third goal out of the seventeen United Nations Sustainable Development Goals (SDG) in 2030 Agenda is to target good health and wellbeing for all at all ages. In order to achieve a sustainable development in the global society it is essential to ensure healthy life and good mental health to every human being (United Nations n.d). UI is a hidden but widespread health problem, with a major impact on women’s life. Any efforts that can contribute to alleviate suffer associated to UI, are therefore in line with the SDGs.

THE PROBLEM

Having the SDGs in mind, the overall purpose of this study will be to obtain more knowledge about nurses’ experience of women suffering from UI, their associated health needs and how nurses’ can provide care to women affected by UI. The prevalence of UI, its severe consequences combined with the lack of previous research emphasize the importance of this project. This Minor Field Study can hopefully contribute in increasing knowledge and enlarge perspective on nurses’ care of women with UI in Tanzania, and is perhaps generalizable to other contexts. By highlighting nurses’ perspective on the question of women’s health needs, awareness of urinary incontinence and the associated care needs can be raised and ultimately initiate a more sustainable situation for the affected women.

AIM

The objective of the study is to describe nurses’ experience of women suffering from urinary incontinence, their associated health needs and provision of care for these women in Arusha, Tanzania.

METHOD

Design, context and sample Qualitative studies are used to create a deeper understanding and insight of a phenomenon through the collection of rich content (Polit & Beck 2018, s. 414). In order to fulfil the aim of this study, qualitative interviews with nurses with experience from meeting women with diagnosed UI, was deemed as an appropriate method for collecting data. The context for this interview study was gynaecological ward and female ward at different public hospitals. The hospitals were located in and around the city Arusha in Tanzania. The uptake of patients at the hospitals was big, since the city and its surrounding districts are populous. In the gynaecological ward, patients with obstetric issues and gynaecological diseases are treated. Female patients with other diseases, such as diabetes, geriatric, trauma and cancer were treated at the female ward. The health

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care personnel at the hospitals consist of nurses, midwives, doctors and physiotherapists. The sample was chosen by convenience, which means that the possible participants got where contacted through a personal contact, a Medical Officer at one of the hospitals. After consent to participate, interviews with eight nurses who worked at different hospitals throughout the region Arusha were conducted. The nurses had at least one year experience as a working nurse. Another inclusion criterion was the experience of meeting females with UI, due to various reasons. The number of interviews was selected to get satisfying information regarding the question at issue and a manageable amount of data. The informants had working experience from different wards at the hospitals. Five of them worked as a general nurse, three of the informants were working as midwives. The informants had working experience as general nurses; henceforward in this study the informants will be announced as nurses. The age of the informants were spread from 25 to 55 years old and were five females and three males.

Data Collection The data were collected through individual interviews with nurses. The interviews were arranged at a hotel lobby, at a restaurant and at a café. The arrangements were established in a way that ensured the informants confidentiality and integrity. The interviews took place in an empty part of the arranged areas, where inappropriate people could not hear. Before the interview started, information regarding the project was given both verbal and written, see appendix 1. The informants were asked if they wanted to speak in English or in Swahili. According to Nationalencyklopedin (n.d) the official language in Tanzania is both Swahili and English, and therefore an interpreter was offered to the nurses. An interpreter contributed during two interviews to make the informants comfortable. Though, the remaining interviews were conducted in English. A semi-structured methodology was used during the interviews to avoid fixation and to gain in-depth answers. Polit and Beck (2018, s. 204) explains that semi-structured interviews are used to ensure that all question areas are answered to. All the questions for this study were specifically developed for the study and defined by the research team. Question study guide was followed, and as a base some predetermined questions were created and follow up questions were used to get more information, see appendix 2. For example, questions were formulated like:

1. Describe what kind of health needs you as a nurse identify that women with urinary incontinence have? 2. What kind of care or treatment can a nurse at your hospital provide to the affected women?

The interviews were approximately 15 to 40 minutes. The interviews were taped with a recorder and were transcribed right after the interviews had taken place. Both researchers transcribed the four first interviews individually. Due to time limit and progression of the ability of transcription, the remaining interviews were divided between the researchers.

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Data Analysis After the transcription, the data was analysed in accordance with an inductive content analysis method. Inductive content analysis is a method for describing data through content-related categories (Elo & Kyngäs 2008). The analysis started with identifying meaning units corresponding to the aim. This was done by thoroughly reading the transcripts while having the aim of the study in mind. Meaning units emerged, creating the base for the next step in the analysis: coding. This step was called open coding and meant that the meaning units were summarized. Furthermore, open coding lead to brief notes written in the marginal. These notes consisted of concise descriptions answering to the aim. The process proceeded with creating subcategories from the descriptions. To get an overview of the subcategories, mind maps were formed as help during the abstraction phase. The abstraction phase was creating headings and categories, which introduced the writing of the result. Table 1. A schematic view of the steps in the analysis according to Elo and Kyngäs (2008)

Transcripts Meaning units

Open coding

Notes Subcategories Abstraction

What the informants said

The meaning of the content

Summary of the meaning units

Concise descriptions

Grouping of the descriptions

General descriptions through categories

Then the most of them have a real problem of the, of the smelling and they have the shame to stay out of the people.

The most of the women have a real problem with the smell of urine. They also feel ashamed so they isolate themselves from other people.

The smell of urine can cause a feeling of shame and result in women isolates themselves.

Smell, shame, isolation.

Consequences. To see the women suffer in silence.

The objective with analysing the data is to gain a broader insight and understanding of the collected content. By forming a systematic model to present the result, the text can contribute to a deeper understanding and thus provide the reader with new knowledge (Elo & Kyngäs 2008).

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Ethical Consideration

According to World Medical Association (2018) there are four research ethical principles including the requirement of information to the participants, the voluntary possibility to participate and withdraw, confidential management of the data and insurance that the information will exclusively be used for the research.

The aim of the research was introduced to the informants in the study. Before the meetings took place, both written and verbal information regarding details of the coming interviews was given to the nurses. It was also explained to them that they were free to cease their participation any time during the research. The nurses were assured that their names were undisclosed and the data was handled with confidentiality. The collected data was exclusively used for this study, for the purpose of research.

Concerning the research problem, risks cannot be seen for the informants to take harm from the participation, in relation to the benefits it can bring. The benefits of the study are considered to: bring new knowledge of the issue; bring attention to the partly unexplored topic; and to make people realize the width of the problem.

RESULT

The experience of what is making women suffer from urinary incontinence The main cause of getting UI in Tanzania is considered to be an obstructed labour. There are different circumstances that seem to affect the risk of women getting prolonged and obstructed delivery. Living in rural parts compared to urban entails several conditions that increase the risk: a long distance to hospital, certain cultural customs, poverty and less education.

“Yes, most of the time it is from the rural parts. Yeah because they get delayed to come to the hospital so they get obstructive labour. And they end up with the problem.” (Informant 1)

In rural areas there are certain cultural involvements interfering with women's life. The nurses explained it exists a culture of home-delivery with the assistance of traditional birth attendants (TBA), female genital mutilation (FGM), not attending the hospital and the use of local herbs as medicine. In accordance with these cultural supplements, women in rural areas believe it is better to deliver at home.

“This problem is big to Maasai, cause Maasai … deliver at home with that mother called traditional birth attendants” (Informant 3)

“Sometimes they just think that ‘if we can stay, some of the locals have some local herbs.’” (Informant 2)

In addition to culture, the economical stage is considered to make the women not attending health care. The hospitals are far away and transportation is expensive and

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troublesome. The nurses’ experienced that poverty is associated with malnutrition and multiple deliveries, which are additional risk factors for birth injuries. It is explained that if women suffer from malnutrition the insufficient coping of the pushing during the contractions, leads to an obstructed labour. Another aspect of the women in the rural part is that they are less educated than women in town.

“You know, in village majority of the people are not educated here in Tanzania. Most educated people ... are staying in town...” (Informant 6)

Besides, the lack of knowledge is experienced to bring consequences like not knowing where and how to search for help once the injury has occurred.

“It is not enough information in the village.”(Informant 3)

The experience of the associated health needs To identify the women’s different health needs

The confrontation of women with UI, resulted in the nurses’ perception of their associated health needs. The nurses identified the need of health education, self-care, mental support and assistance in daily activities. According to the experience of the informants, health education was considered to be the most important health need. A woman who suffers from UI was deemed to be in need of increased knowledge to both understand and manage her condition. To gain insight and comprehension of the situation, the nurse had to equip women with the necessary tools. Thus, information regarding where to search help and education about how to take care of themselves were unavoidable.

“Information and education is number one. Is number one. Information, and educate the patient.” (Informant 2)

In association with the need of health education, women were foreseen to require knowledge about self-care, cleaning and the importance of using sanitary pads. It was in the nurse role to make sure the women receive knowledge about how to keep themselves and the surroundings clean.

“Self-care. Maybe wearing sanitary pad and cleaning, frequently cleaning.” (Informant 1)

In extension to the self-care, the nurses advised the women to use sanitary pads. The use of sanitary pads minimized the risk of leaking through clothes and prevented bad smell of urine. According to the informants, sanitary pads could make women feel comfortable in their day-to-day life. Women needed to contribute for the sanitary pads on their own because the hospital could not provide it. However, the women who could not afford to buy sanitary pads used different textiles.

“...you find that they take nylon or whatever they find, they take like a napkin.” (Informant 5)

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Besides the health education, women were expected to need support from the nurses. In this context, the support was considered to be practical, such as the need of clothes, good hygiene and satisfying nutrition. The assistance in daily activities was experienced to be relevant for a functioning everyday life. The nurses explained that women needed to eat a balanced diet, to achieve a satisfied nutrition.

“You have to take the patient, give support, support them, if we sure will give them clothes, there are those things for hygiene, and eh nutrition.” (Informant 2)

Additionally, the women need to share the problem with a nurse or a psychologist. The nurses’ experienced that the situation of the affected woman is perceived as very difficult, not least emotional. Thus, psychological support is a great health need for these women.

“And once it has started developing, the issue should be addressed first of all to ensure that the patient is in good psychological stage ... now we should ensure that psychological support is constantly given.” (Informant 5)

To see the women suffer in silence

The nurses’ experienced that the struggle with UI brought certain negative consequences on the women’s social life and relationships. The nurses observed that the affected women often felt ashamed and that they had difficulties to talk to other people about their problem. The women were afraid of other people spreading rumours about their situation. They understood that the women had to be sure that the person could be trusted, if not, they kept quiet and suffered in silence. The silence was a consequence due to fear of being misunderstood or judged by other people. The nurses explained that women felt insecure due to the discriminations they face.

“Most of them think that this is their problem, the shame problem ... they do not tell anybody, they just suffer in themselves.” (Informant 2) “If you say, and you are not sure, that person maybe she can tell others and you think you are not safe. So they cannot just talk to anybody you know.” (Informant 1)

In addition, the nurses knew the stigmatization occurred when a woman differed the norm, because of the bad smell of urine. The informants experienced that other people’s actions and behaviour were creating the stigmatization of the women. It emerged that other people could harass them in a way that ended up with the women isolated themselves. The informants described that women were called bad names when they were out in the society. It is considered that these discriminations and verbal abuse resulted in self-isolation of the woman.

“Stigma because all of the people are going through hmm somebody hmm bad smell hmm bad smell, can you go there again?...some of them just

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locked in the house.... If you go somewhere somebody is holding her nose with disgust you see. All the time… It is the big problem … you know, sometimes they call … the which one, it is terrible.” (Informant 2)

Furthermore, the people in the society could isolate the women, even the ones who are close to them. The informants observed that the time had an important role and impact on the women’s wellbeing, particularly the mental health. It was considered common that the women felt guilt and stress due to the leakage. The informants expressed that living in isolation and not having social interactions was very concerning to the women. Hence, suffering in silence was correlated with UI.

“Community ... isolate, even husband they isolate them, so they feel guilt… If the problem is not diagnosed early and she is in the village and the family members isolate … it can come … mental illness, stress, end up with mental illness.” (Informant 3)

To understand the effects on the mental stage

According to the informants, isolation, stress, shame and relationship problems were associated with UI and could cause mental illness to the affected women. It is considered that living in isolation can cause depression. The nurses observed that avoiding gatherings are affecting the women’s mental health. Without support from the surroundings, women are at high risk to develop negative effects on the mental stage.

“ … you do not go anywhere, any activities, any socialisation.” (Informant 2)

“Because you know women will feel isolated, feeling of depression due to the affection…” (Informant 5)

It emerged that a lack of knowledge about UI brings a lot of questions and overthinking about the problem. The nurses observed that women with less knowledge, compared to others, had a lot of questions and felt concerned about the situation when they sought help. In addition, the nurses explained that women often had a feeling of shame and disgust about their urinary leakage. Women often tried to hide the condition until they reached a point where seeking help was inevitable. The nurses were told, that the husbands could start to complain about their issue. Further, the complains were creating negative thoughts about themselves. According to the informants, UI caused psychological torture due to the stress of hiding the problem from everyone.

“ … overthinking about the situation without not knowing will generate a lot of questions … I used to realize that the mothers were to come to hospital was like ‘I am sorry, ... I am having a flow of urine, that cannot be controlled. And I have been hiding it for long long time, so what I am feeling, I cannot talk to anyone. Then, now my husband has been complaining several times and I have the feeling that I am so disgusting...’ ... So, like I said my experience is that they are very introvert because of

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the issue and the issue are psychological torture …. the issue cause more stress for the patient as they hide it from everyone.” (Informant 5)

UI can cause relationships problem, which can end up with the husband leaving their wife. The nurses understood that this was a severe consequence for the women to deal with. To be abandoned by their husbands meant both psychological and economical problems. The informants described that especially males had a hard time to understand that UI is a problem like any other medical problem. It emerged that women who were left by their husbands had difficulties to provide for their families. Informants experienced that due to UI; women could not go to work and therefore did not have an income. Hence, this caused stress and affects the mental health in a negative way.

“But in family level some of women get pushed out for this condition. Cause male cannot understand that this is a problem … they cannot understand that this is a disease like other diseases and conditions” (Informant 4)

“ ... she cannot work, go to the work to increase income to the family that is the problem for them.” (Informant 3)

The informants observed that UI has a great negative impact on the women’s mental health in many different ways. An informant described that a woman felt like the life was over, when she realized she had the problem.

“You see that, now it is the end of my life.” (Informant 2)

To meet the consequences of hiding UI

The informants experienced that the fear of exposing the problem resulted in other physical diseases. Thus, the women hide their problem until they get further complications. The nurses explained that when women search help at the hospital, they could get treatment for the newly added problem instead of their UI. Commonly, the kidneys get affected by the urine failure and might cause chronic diseases. Thus, the women got referred to the kidney unit. The nurses experienced the difficulties to assess these women and to reveal the hidden problem.

“I feel like they are afraid of exposing the situation. So, they hide … the condition until they develop to kidney disease … normally the bladder must have some kind of problem … it makes a back of urine to the kidneys, giving hydronephrosis sometimes and pyelonephritis sometimes. Which later can complicate much because of problems to the kidneys, it is very chronic issue to the kidney.” (Informant 5)

“ ... it can cause many complications, like urinal failure, like hydronephrosis, like pyelonephritis.” (Informant 6)

Besides the dilemma of hiding, the nurses observed that the culture of not attending the hospital could bring complications. The women in the village often had a hard time to

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come to hospital, due to various reasons. The nurses explained that expensive and troublesome transports inhibit the women to attend hospital. Thus, this complicated their access to health care and caused physical diseases, such as UTI’s, to the women.

“What I think and what I have been observing is that, for particularly the mothers that have the problem and not coming to the hospital, that they always have infection due to urine tract infections, who is very common to them.” (Informant 5)

In extension, the uncontrolled flow of urine can cause sores on the pubic area. In appearance of sores in addition with bad hygiene, dangerous infections can occur.

“So, the complications to the urinary incontinence over time, sores on the pubic areas and the surrounding parts.” (Informant 5)

The experience of providing care to the affected women To offer and provide medical treatment The informants described that it existed different options for treatment, though they are few. The most common treatment is surgical even though medication and catheterization are supplementary treatments. Primarily, when the women searched care at any hospital she met a nurse. It is included in the nurse role to do an assessment on the women to foresee what could have caused the UI. The assessment consists of questions and a physical examination to sort out what kind of UI it is.

“When she arrives at the hospital we do assessments.” (Informant 3) According to the informants, surgery is the main treatment for UI. It emerged in the result that women do not have many options when it comes to treatment. Surgery is the only way to fully recover from UI.

“They need surgery, when they go to that centre, surgery is done to repair it and they recover … ” (Informant 3)

Though, this is a process of multiple operations followed by check-ups until the patient is fully recovered. The nurses experienced that the recovering is highly individual and depending on what circumstances the women challenge. The nurses experienced that living in a low-income context can complicate the recovering and they have to come back more often.

“But it's not a one time, you come you get operated, you go ... another time maybe you be told to come after two weeks or three weeks or one month, it will depend to come back until you are totally cured.” (Informant 1)

Once the patient has been identified they get referred to the specialist hospitals. These certain hospitals are developed to perform the surgeries for the affected women. According to the informants, once the women arrived to these hospitals she can

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feel free. All the patients at the specialist hospitals are there for the same problem so they can support each other.

“ ... we have some specified hospital to care these patients. So, they have their own hospitals so that once the patient goes to the hospital, they will be themselves, of the same issue”. (Informant 5)

Besides the surgical treatment, the nurses often insert a catheter to limit the leakage. The catheter treatment can remain for a period of time. Thus, it is important that the women make sure to always keep it clean to avoid infections.

“ ... we set a catheter inside to ensure that there is no leakage of urine outside. Once we do, it is this condition and also to take care of that catheter of course during that period of catheterisation ... so we do make sure that the catheter does not make an insending infection ... “. (Informant 4)

In addition to the catheter, the women can get antibiotics prescribed to avoid infections. Anti-depression medication is also given to some women due to their mental illness.

“I think catheterizations, medication and repair of the injured parts”. (Informant 6)

To support the woman

To the background of how women with UI suffer in multiple ways, the nurse has an equally multifaceted assignment to support the women, mentally and in terms of how to recover. But primarily she needs to help the women with acceptance, to show love and to encourage them. The nurse has an important role in the support of women with UI.

“So, my experience is that you need patience and time and a deep understanding of the issue to extract it and to help these patients.” (Informant 5)

The informants explained that the women get offered mental support either by a general nurse or a specialist. To support the women mentally is important for increasing the women self-esteem.

“ ... we can offer what we call psychological support to that patient, it’s what we nurses do ... there is a psychiatric specialist or there is a psychiatric nurse … ” (Informant 4)

In addition to mental support, rehabilitation is a way of supporting the women's condition and situation. Rehabilitation is bladder training and education on good toilet habits. Besides, the informants defined that rehabilitation centres could contact and support the woman.

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“To don’t void urine when they don’t need. We tell them don’t want to urge to go to the toilet, to give two hour before going to the toilet, train bladder, bladder training.” (Informant 3)

“So through the rehabilitations centres, ... they can do procedures treatment, long treatment, yeah until they are alright.” (Informant 4)

Furthermore, the informants experienced that giving advice and support regarding the woman’s nutrition is important. Some women have malnutrition when they seek for help, making them weak and not strong enough to recover properly. Then you have to advice and push them to improve their eating habits.

“ … urinary incontinence due to fistula, as this can be caused by, you know some tribes who believe that certain food is not recommended for women. So, the women can be weak and during the labour they cannot cope… so, you try to council what they supposed to eat. And that the food is balanced … ” (Informant 6)

To increase the women’s knowledge through health education

The nurses perceived that health education is a wide concept; it could cover various topics in order to achieve knowledge about how to manage and to prevent the condition. Thus, the overall purpose was to contribute with knowledge, to the once in greatest need. According to the health needs, the informant explained that health education is the most important thing to ensure. The nurses are convinced that increasing the general knowledge about UI can help women to deal with and to understand the situation; on an individual but also a societal level. By reassuring the urinary leakage can be solved and to dispel preconceptions about it, this can lead to better conditions for the women.

“As a nurse, first you have to educate. Education is important. And then you have to reassure that women, that this problem is solved. Yes, and then assist with cleaning if she is unable to clean herself.” (Informant 1)

A significant component of health education is to teach the woman how to take care of the leakage. An informant says that self-care is about how to keep an aseptic hygiene, and to ensure the woman keeping herself clean to avoid infections and bad smell. Thus, this implies that self-care and cleaning are highly relevant topics.

“So, you have to educate her how to take care of herself. And then you have to advise her to come to the hospital.” (Informant 2)

“They give the instructions on how to take care of themselves, self-care, hygiene … and use aseptic to avoid the infections like UTI and when they go somewhere you should use pads to avoid urine to come out. Yeah.” (Informant 3)

It is considered that there is a lack of knowledge among the people in the community. Thus, health education can bring knowledge not only to the women who are affected,

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but also to their surroundings. This can prevent new cases of UI, and it can ease the burden of stigma experienced by suffering women.

“So, we need to teach the community about it... how to prevent it. So, through health education.” (Informant 4)

To prevent UI and provide information

According to the informants, prevention of UI is considered to be all about increasing the knowledge through various measures. Besides an increased knowledge, prevention is about limit risk factors of getting UI and to avoid further complications due to the leakage. By ensuring more education among the health care workers, there is a chance to prevent the problem among the people. Throughout all levels of health care, they work preventively in order to avoid that women develop UI.

“ ... what I think, is that the number of health personal, to be insured enough education about it. So, they will plan themselves what to do, to prevent it in all levels of health care.” (Informant 5)

It is considered that to limit the risk factors is an act in line with the health care preventive measures. The nurses felt dejection over the fact that girls get pregnant while they are so young. This is one of the hardest parts of being a nurse, since the combat of early pregnancy goes beyond health care. Early pregnancy has been a problem for a long time and is constituted by culture and traditions. The informants explained that preventing prolonged and obstructed labour is easy to achieve in the hospital. Though, during home-delivery in the village, it is hard to avoid complicated births. In addition, to assess and care for the women at the right department are ways to avoid further complications.

“Prevent by my thinking, is that you can prevent it by ensuring that the risk factors being limited, such as early pregnancy, such as between thirteen or twelve years old. Also, to avoid prolonged labour … when it has happened already, to identify the department that must care the patient.” (Informant 5)

In addition to the health care, non-governmental organizations (NGO) contribute with outreach programmes. The NGO’s are known to go to the rural parts to talk to the civilians to increase the knowledge. They reach out with information about treatments and to not be ashamed of the urine leakage. The nurses experienced that NGO’s outreach programmes are an effective act of prevention.

“And then you go to the outreach, find the woman, talk to the woman, say this is not a shame thing, this can be treated.”(Informant 2)

The education is sent on television and radio, to communicate to a larger amount of people. Advertisement announce where and how to search for treatment. Though, these people who don't have a television or radio is hard to reach out to. Television is expensive and people, particularly in the rural parts, cannot afford to buy that. The

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nurses explained that poverty makes them excluded from possibilities to access information. Thus, this complicates the nurse chances of providing health education to women.

“Yes, this education is going on TV, you know, as I told you, the NGO’s just educate them you know.” (Informant 2)

Apart from the education, the outreach programmes are about identifying UI and bring the affected women to hospital to get treatment. The nurses expressed that preventing complications due to UI is highly relevant. Once the issue has occurred it can develop other diseases. Thus, this is why initiatives have been raised to prevent it.

“NGO’s … they just announce it, if some of them have that one you go far away, you pick them and go to hospital.” (Informant 2)

The nurses have different perceptions about whether the care is adequate or not. Some state there is no need for more hospitals, but the predominant opinion is that the treatment is not enough. However, all of the informants shared the same opinion about more outreach programme is needed to be able to identify more women with the problem UI.

“No, no it’s not enough treatments ...” (Informant 4)

“ … need more outreach to go in the village to find them there”. (Informant 3)

DISCUSSION

Methodological considerations A qualitative approach was to prefer, as there was a need to go into an unexplored field: nurses’ experience of meeting women with UI. This study was a qualitative semi-structured interview study, based on open-ended questions. This method was used to convey a greater and diverged data. Open-ended questions allow deeper data because the informants can answer the questions in their own words (Polit & Beck, 2018 s. 168-169). Thus, open-ended questions were chosen to avoid plain answers and to obtain a deep understanding of the issue. Polit and Beck (2018, s. 199) clarify that the selection of the informants needs to be chosen with consideration of the research aim due to get rich information. To widen the variations of the collected data, informants with different background and experience are preferable. Hence, the interviews were conducted with eight nurses, who worked at different hospitals and wards. The informants had various experiences of caring for women with UI and had worked as a nurse for at least one year. Thus, this broadens the perspectives of caring for the affected women. The professionalism of the informants ensures the credibility of the collected data (Polit & Beck, 2018 s. 295). The various backgrounds of the informants deepen the results of the data, and the conducted information gets more representative for the population.

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The interviews were conducted individually to secure anonymity and confidentiality of the data. The meetings were arranged in a respectful way but the environment was yet not fully appropriate. The interviews were conducted in a hotel lobby, at a restaurant and at a cafe. A private room would have been preferable, since it would contribute to minimize the surrounding noise. A stressful environment can affect both interviewers and interviewees and the chance to collect useful data. However, we felt a trustful atmosphere was established throughout the meetings. There was a need for an interpreter since a couple of informants were more confident to speak in Swahili. The interpreter was both a disadvantage and advantage during the interviews. The answers of the informants were interpreted before it was conducted on the tape. Hence, it means that the result was influenced by the interpreter’s view and opinions. Even though, the interpreter was familiar with the culture and the context of the issue in Tanzania. Despite the fact that the majority of the informants spoke fluent English, a chance of misunderstandings must be considered. During the transcription, the researchers might misinterpret the different dialects and therefore be a source of error. The confirmability refers to the data’s accuracy, relevance and meaning (Polit & Beck 2018, s. 296). The findings of this study reflect the informants’ voice in the greatest possible way. Nevertheless, the risk of human error must be acknowledged. The authenticity refers to the various experience of the realities represented in the result (Polit & Beck, 2018, s. 296). The inductive content analysis depended on the selected informants’ answers, which presented different perspectives of the issue. It leads to a diverged description of the question of issue. When starting the study, a decision on focusing the interview on UI caused by obstetric fistula was not decided, but the UI was expected to be described in various forms. However, through adherence to the informants, a picture of women’s need for care in relation to UI as experienced by them was captured, and the reality for the informants was that UI is a result of fistula.

Discussion of the findings The overall aim was to describe how nurses’ experiences women suffering from urinary incontinence, their associated health needs and provision of care for these women. It emerged in the result how nurses’ experienced the women’s consequences of living with UI, and how these consequences brought sense to the women's health needs. The research settles with the importance of the nurse providing information and health education to the people in Tanzania, especially in rural parts. It appears that different conditions and circumstances correlate with the risk of getting UI, making the need for directed preventive and supportive efforts evident.

Nurses’ experience of women living with UI

The result reveals in how nurses’ experience women suffer from UI and the width of consequences this brings. According to the nurses, UI has several negative impacts on the affected women's social life, mental health and general QOL. UN Women (n.d) declare that differ the norm is an extremely difficult situation as a woman in the cultural and social context of Tanzania. Already, women’s participation in socio-economical and political contexts is limited. The reasons for this are the lack of formal education, the

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existence of teenage pregnancies, violence and sexual violence against women and girls, FGM and HIV/AIDS Throughout the result, it appears that the women’s social life are interfered because of the abnormality, such as the smell of urine, UI brings. The nurses considered that the fear of other people’s thoughts lead to woman’s sense of shame and silence. It emerged that people’s actions and behaviour towards the woman are creating the stigmatization. The nurses exemplified the behaviour with actions like holding their nose and chasing out the woman from her own house. The stigmatization is upheld by the insufficient understanding of the situation and the general belief that the leakage is a deficiency caused by the woman. The nurses explained that the culture of making jokes and call the women bad names is creating the stigmatization, which results in the women not attending any socialization or public gatherings. This result is consistent with a study by Lyimo and Mosha (2019) giving that stigmatization is a consequence of isolation, both by the woman herself or by their loved ones and the community. The self-created stigmatization was a result of low self-esteem due to bad smell and the feeling of shame. The isolation by family and community members was a result of the acts of discrimination towards women. People around the woman could abuse her mentally by harassments and complains about the smell of urine. Other people’s actions and behaviour lead to a stigmatization that ends with women suffering in silence. It arises from the result in this study, that stress is observed to have a strong negative impact on the women’s mental health. In the result, it occurs that stress can be generated by complains from the husband, social isolation and the wish to hide their leakage. In extension of the complains, the women can get abandoned by their husband. It is explained that being left by their husband, is one of the worst possible outcome for the women with UI. To be abandoned can lead to, not only psychological effects, but also economic difficulties for these women. Thus, the divorce in combination with UI might inhibit the women’s opportunities to increase the income. In extension to this, the stress of not being able to provide food for their children affects the women. The nurses experienced that the stress and the suffering generated from solitude, brings mental illness. Henceforward, the nurses understand the women’s QOL is extremely affected by the consequences of UI. This alludes with the findings of the study by Dolea and AbouZahr (2003); how the women’s mental health was affected by UI. Low self-esteem and negative thoughts arouse from the isolation and the avoidance of social contexts. UI inhibited the women to take part in the kind of activities where toilet facilities were unavailable, such as public transportation and grocery shopping. Further, the reported effects were not only depression and anxiety but also growing stress and frustration over the situation. Having the definition of QOL (World Health Organization 1997) in mind the nurses experienced that UI affect women negative in all aspects of life.

The importance of the nurse role in care for women with UI The findings of this study enlighten the nurse role in the care for women with UI. The nurses’ experienced that to provide the care associated with the women’s health needs, is the foundation of the work as a nurse. Previous studies have been made on the

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affected women’s experience, but less notice has been given the nurses perspective of the issue. Thus, this study pays attention to how the nurse responds to the affected women’s health needs. The informants emphasized the importance of nurses providing health education, since the general knowledge about UI among the people in Tanzania is deficient. The access of information lies within the health care and should be given, especially to the people in rural parts of the country. The risk factors of getting UI are more prevalent in rural parts, partly because of the poor knowledge and partly because of the living conditions. The absence of knowledge is a reason why nurses ought to contribute it, so the women understand the importance of attending hospital to get treatment. Women do not know there is treatment available nor that it is free of charge. The great need of more information and education appears to be the nurse’s mission to complete. Sensoy et al. (2013) present that due to psychological, social and cultural problems women do not attend hospital for treatment. Therefore, health care workers should increase their attempt to make citizens understand that UI is not a condition of taboo while also offer mental support, medical treatment and education. This result correlates with a study made by Lyimo and Mosha (2019), which point out that health education about conditions, as urinary leakage needs to be provided by nurses, especially in rural parts. One could argue that raising awareness and knowledge about the issue, is the main task of a nurse and can lead to a better life situation for the affected women. It emerges in this study that self-care is an experienced health need that has to be upheld with the help of the nurse. The result shows that there is a shortage of knowledge about the importance of personal hygiene. The informants experienced that it is in the nurse role to enlighten the effects of cleaning, the use of sanitary pads and keeping a clean environment. This would be in the nurse best interest: to prevent further complications from affecting the women. There is a lack of previous studies that shows the importance of nurse providing instructions on self-care, this study contributes with some new knowledge but further research is needed. The finding of this study highlights the importance of the nurse giving support to the women. As the result indicates, the women’s psychological stage is extremely affected by the time they search for help. The nurses exemplified the psychological torture the women experienced with depression, stress and overthinking about the situation. This correlates with the results of the study by Barageine et al. (2015), mentioning that psychological effects consisted of worries of the problem being disclosed, depression due to isolation and feeling of worthlessness. Thus, to obtain satisfied mental health and to minimize stress the women were instructed in coping strategies. However, in the result in this study, psychological treatment was highly prioritized in the care of women with UI. The nurses’ experienced that to show love and to encourage the women are specifically important to ease their mental burden. Giving that, in combination with support in daily activities, such as nutrition and hygiene, it is a way for the women to repossess the authority of the problem. Furthermore, this could decrease the mental distress and in extension, recovering from depression.

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Nurses’ perspective of cultural diversities and access to health care

The life situation for the affected women depends on different or unequal assets. Women in rural parts live under strongly simple circumstances, the low-income context makes it harder for women to live with UI. Poverty limits access to health education and hygiene articles like sanitary pads. Implications are rather at a political level than clinical: to organize the health care and resources to reach out to those of most needs. However, to conduct research on the issue can be one way to highlight the problem. Cultural diversities and the risk of getting UI seem to be correlated as the tribes, mostly Maasai, prefer home-delivery with the assistance of TBA. John, Mkoka, Frumence and Goicolea (2018) reports that women felt more comfortable to give birth with a TBA instead of a health care worker, since the TBA provided the support women asked for. Also, the wish of relatives accompanying the women during the labour can be managed at home-delivery. The tribes’ beliefs and traditions are associated with the risk factors of getting obstructed labour. Lyimo and Mosha (2019) described that women in the village believe that praying would cure the urine leakage. In addition, traditional medicines like local herbs, and the help of traditional healers. The community believes that the issue is associated with a punishment from God. Hence, visiting the hospital would be a waste of time for the women. Since culture and traditions have a big impact on their day-to-day life in the rural parts of Tanzania, it is hard to convince the women that deliver at a hospital is the best option to prevent UI. Education is reasonably partly a solution here, meanwhile respecting the prevailing culture. The result in this study shows that availability and access to health care is low in rural part, due to long-distance and expensive transportation. This implies that health care is not satisfying spread over the country. Thus, this complicates the situation for women to obtain the proper treatment for the issue. This is in line with the report of Lyimo and Mosha (2019), unfamiliar surroundings, lack of transport and information is playing a role in not seeking health care. The fear of being harassed by other passengers on the transportation made the women stay home and suffer in silence. The findings in this thesis showed that there are different opinions about the adequacy of health care. The requirement from the majority of the informants was to reach the women in rural parts with health care and health education, which they need. The informants in this study were agreeing about the need for more outreach programmes to identify women. Outreach programmes can help to decrease the risk of developing UI through raising awareness about the issue to the community. The need of more outreach programmes is in line with the result of the study by Lyimo and Mosha (2019), which emphasizes the importance of community awareness programmes. They suggest that the government of Tanzania in collaboration with NGO’s can initiate and define possibilities to communicate with and educate the people. The improved knowledge could ease the burden of UI due to various reasons, particularly fistula. One could argue that culture and politics might entail a hinder for the nurse to help the women to achieve health. CONCLUSION

The research enlightens the complications nurses’ experience UI brings on the woman’s day-to-day life. UI burdens the women’s life both physically, mentally and their social wellbeing. Thus, these bring negative effects on their chances of growing and establish

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their own wellbeing. This is the basis for to the woman’s health needs, according to the nurses. The nurse has an important role in providing health education, instructions on self-care and mental support. Raising awareness about UI is essential for the women to take back the authority of their life. The treatment is satisfactory, when accessible, but the culture and politics complicate access to health care, particularly for the women in rural parts. Having the SDG’s in mind, ensuring a healthy life and mental health to everyone is vital. Thus, more research on this subject is necessary. Further research can be made on the important role as a nurse and their contribution with mental support and health education. Regardless the need of studies, it would be interesting to investigate how health education through public and free seminars in the villages could make a difference for women affected with UI.

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REFERENCES

Adedokun, B. O., Morhason-Bello, I. O., Ojengbede, O. A., Okonkwo, N. S. & Kolade, C. (2012). Help-seeking behaviour among women currently leaking urine in Nigeria: is it any different from the rest of the world? Patient preference and adherence, 6, ss. 815-819. doi: 10.2147/PPA.S24911 Barageine, J. K., Beyeza-Kashesya, J., Byamugisha, J. K., Tumwesigye, N. M., Almroth, L. & Faxelid. E. (2015). ‘I am alone and isolated’: a qualitative study of experiences of women living with genital fistula in Uganda. BMC Women’s Health. 15(1). doi: 10.1186/s12905-015-0232-z Basak, T., Kok, G. & Guvenc, G. (2013). Prevalence, risk factors and quality of life in Turkish women with urinary incontinence: a synthesis of the literature. International Nursing Review, 60(4), ss. 448-460. doi: 10.1111/inr.12048 Cowgill, K., Bishop, J., Norgaard, A., Rubens, C & Gravett, M. (2015). Obstetric fistula in low-resource countries: an under-valued and under-studied problem – systematic review of its incidence, prevalence, and association with stillbirth. BMC Pregnancy and Childbirth, 15 (1), doi: 10.1186/s12884-015-0592-2 Dolea, C. & AbouZahr, C. (2003). Global burden of obstructed labour in the year 2000. Geneva: World Health Organization. https://www.who.int/healthinfo/statistics/bod_obstructedlabour.pdf [2020-05-04] Elo, S. & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), ss. 107-115. doi: 10.1111/j.1365-2648.2007.04569.x Gjerde, L. J., Rortveit, G., Muleta, M. & Blystad, A. (2013). Silently waiting to heal: Experience among women living with urinary incontinence in northwest Ethiopia. International Urogynecology Journal, 24(6), ss. 953-958. doi: 10.1007/s00192-012-1951-4 Hayder, D. & Schnepp, W. (2010). Experiencing and Managing Urinary Incontinence: A Qualitative Study. Western Journal of Nursing Research, 32(4), ss. 480-496. doi: 10.1177/0193945909354903

International Council of Nurses (2020a). ICN Members’ Address List – 2020. https://www.icn.ch/sites/default/files/inline-files/PUBLIC_NNAs%20Address%20list%20May_2020%20Eng.pdf [2020-05-20

International Council of Nurses (2020b). Membership. https://www.icn.ch/who-we-are/membership [2020-05-20] International Council of Nurses (2020c). Nursing definitions. https://www.icn.ch/nursing-policy/nursing-definitions [2020-05-20]

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John, T. W., Mkoka, D. A., Frumence, G. & Goicolea, I. (2018). An account for barriers and strategies in fulfilling women’s right to quality maternal health care: a qualitative study from rural Tanzania. BMC Pregnancy and Childbirth, 18(1), doi: 10.1186/s12884-018-1990-z Lyimo, M. A. & Mosha, I. H. (2019). Reasons for delay in seeking treatment among women with obstetric fistula in Tanzania: a qualitative study. BMC Women’s Health. 19 (1), doi: 10.1186/s12905-019-0799-x Madombwe, J. P. & Knight, S. (2010). High prevalence of urinary incontinence and poor knowledge of pelvic floor exercises among women in Ladysmith. South African Journal of Obstetrics and Gynaecology, 16(1), ss. 18-21. https://hdl.handle.net/10520/EJC65921 Masenga, G. G., Shayo, B. C., Msuya, S. & Rasch, V. (2019). Urinary incontinence and its relation to delivery circumstances: A population-based study from rural Kilimanjaro, Tanzania. PLoS ONE, 14(1), ss. 1-12. doi: 10.1371/journal.pone.0208733 Nationalencyklopedin (n.d.). Tanzania. Tillgänglig: Nationalencyklopedin [2019-10-28] Polit, D. F. & Beck, C. T. (2018). Essentials of nursing research : appraising evidence for nursing practice. 9. uppl., Philadelphia: Wolters Kluwers Health. Sensoy, N., Dogan, N., Ozek, B. & Karaaslan, L. (2013). Urinary incontinence in women: prevalence rates, risk factors and impact on quality of life. Pakistan Journal of Medical Sciences Quarterly, 29(3), ss. 818-822. doi: org/10.12669/pjms.293.3404 Söderbäck, M., Wilhelmsson, E. & Häggström-Nordin, E. (2012). Absence and reliance: Liberian women’s experience of vaginal fistula. African Journal of Midwifery And Women’s Health, 6(1), ss. 28-34. doi: 10.12968/ajmw.2012.6.1.28 Tunde, D., Suran, R. & Jagedisa, M. (2015). A clinical audit of female urinary incontinence at a urogynaecology clinic of a tertiary hospital in Durban South Africa. South African Journal of Obstetrics and Gynaecology, 21(2), ss. 33-38. doi: 10.7196/sajog.983 United Nations (n.d.). Goal 3: Ensure healthy lives and promote well-being for all at all ages. https://www.un.org/sustainabledevelopment/health/ [2020-05-04] United Nations Development Programme (2018). Human Development Indices and Indicators: 2018 Statistical Update. New York: United Nations Development Programme. http://hdr.undp.org/sites/default/files/2018_summary_human_development_statistical_update_en.pdf [2020-05-04] UN Women (n.d.) Africa: Tanzania. https://africa.unwomen.org/en/where-we-are/eastern-and-southern-africa/tanzania [2020-05-04]

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Walker, G. & Gunasekera, P. (2011). Pelvic organ prolapse and incontinence in developing countries: review of prevalence and risk factors. International Urogynecology Journal, 22(2), ss. 127-135. doi: 10.1007/s00192-010-1215-0 World Health Organization (1997). WHOQOL – Measuring Quality of Life. Geneva: World Health Organization. https://www.who.int/mental_health/media/68.pdf [2020-05-20] World Medical Association (2018). WMA Declaration of Helsinki – Ethical principles for medical research involving human subjects. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects [2020-05-04]

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APPENDICES

Appendix 1 - Participant information and consent agreement

Information to research participants We would like to ask you if you want to participate in a research project! This document gives you information about the project and what it means to participate.

The researchers We are two nursing students from University of Borås who have just begun with the bachelor thesis. We have received a scholarship called MFS (Minor Field Study) from a Swedish organisation “Sida”. Through this great opportunity we are going to Arusha, Tanzania to interview nurses to collect the data for the thesis.

The project We ask for your participation, as we are interested in nurses’ experience of identifying health needs and providing care to women struggling from urinary incontinence in Arusha, Tanzania. The study is based on interviews with nurses at different hospitals throughout the region Arusha.

Millions of people, mostly women, all over the world are struggling with urinary incontinence and its symptoms on their day-to-day life. The condition is often taboo and for that reason, we want to study how you as a nurse may or may not, notice the health needs of the affected women and what care you can provide. Hopefully the project will contribute with further understanding and reflection of the problem.

The procedure

• The interviews will be taped with a recorder and later transcribed • The interviews will be 15-40 minutes and consists of open questions • The transcript will be analysed by the researchers Maja Andersson and Julia

Henriksson • Interview content and/or quotations may be used in the final bachelor thesis and

will thereby be made available through academic publications • Any interview content, or quotations from the interview, that are made available

through academic publication will be anonymized so that you cannot be identified

Risk analysis We do not anticipate that the participants will take any harm and therefore we do not see any risk with participating.

The data Your participation in this study is voluntary. You can withdraw at any time or refuse to answer any questions without any consequences of any kind. You also do not need to specify any reason why you cancel. Your answers will be processed so that no unauthorized people can share them. Careful measures will be taken in order to secure

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your confidentiality as a participant. The collected data will exclusively be used for this study for the purpose of research.

Insurance and compensation No insurance or compensation will be added.

Consent to participate in this study I have received oral and written information about the study. I understand that I can cancel my participation at any time and for no reason. I agree to participate in this study and that the answers from me are treated as described in the research information.

Hopefully you want to participate in the study, if so please sign this form.

________________________________________

My Signature Date

Contact Information If you have any further questions or concerns do not hesitate to contact:

Name of researcher: Maja Andersson Name of researcher: Julia Henriksson Tel: +46732771700 Tel: +46725530483 E-mail: s171567@student.hb.se E-mail: s172719@student.hb.se

Name of thesis supervisor: Karin Högberg RN, PhD and Lecturer at University of Borås Tel: +46736325032 E-mail: karin.hogberg@hb.se

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Appendix 2 - Question Guide Introduction: The objective of the study is to describe in what way nurses’ experience women suffering from urinary incontinence, their associated health needs and how nurses’ can provide care to these women in Arusha, Tanzania. In Sweden it is a common but stigmatized problem, therefore people have a hard time seeking for help and also perform self-care. Since you are working as a nurse, we believe you have meet with these women and therefore we want to interview you.

Question Guide: 1. Do women that are hospitalized at your hospital have urinary incontinence? If

so, why do they have it? How do the prevalence look like? 2. Can you describe your experience of caring for these women? 3. How can you identify this problem? Do the women talk about it? If not, why? 4. Can you tell me about information regarding the condition here in Tanzania? 5. When the women leave the hospital what can you do for them then? Do the

women perform any self-care? 6. What consequences can urinary incontinence have on the affected women? 7. Describe what kind of health needs you as a nurse identify that women with

urinary incontinence have? 8. What kind of care or treatment can a nurse at your hospital provide to the

affected women? 9. How do you as nurse think about the care of urinary incontinence? 10. Do you have anything more to add regarding what way nurses’ experience

women suffering from urinary incontinence, their associated health needs and how nurses’ can provide care to these women?

Follow-up questions: 1. Can you explain further? 2. Do you have an example?