Social reintegration service after fistula repair and its challenges in North Gondar, Ethiopia: Women’s perspectives: A qualitative study

Back ground: Following a fistula repair, there is a need to rehabilitate and reintegrate women into society. Existing interventions are not well documented or not sufficient to maintain victims’ life and in most cases the issue of reintegration depends up on treatment success. Data on how reintegration has fulfilled women’s needs is sparse. Therefore, the aim of this study was to explore the needs and challenges of women on post obstetric fistula repair. Method: A qualitative, phenomenological approach was used through in-depth interviews to explore women`s perspectives on reintegration service. Respondents were selected by purposive and snow ball sampling until data saturation was reached. Women were interviewed at least one year after they obtained surgical correction. Open code version 4.03 and thematic analysis was used to analyze the data. Result: Twelve women after fistula repair were interviewed at different settings; their median age at interview was 27(range 24- 45). Five were fully continent and six claimed to have either stress or urge incontinence. Repair sessions ranged between 1-5surgeries with an average period of 6.25 years after treatment. The meaning attached to reintegration slightly differed between those women who regained continence and those with unsuccessful repair. Surgical correction, resource support and restoration of social health were found to be the most important aspects of the service. Financial difficulty, lack of counseling on fertility needs, lack of individual centered services and residual leaks were commonly reported challenges. Conclusion: Effective reintegration services should meet women’s needs to the level of their anticipation. Challenges inherent in post repair reintegration require appropriate measures to mitigate dependency, loneliness and the recurrence of fistula.


Abstract
Back ground: Following a fistula repair, there is a need to rehabilitate and reintegrate women into society. Existing interventions are not well documented or not sufficient to maintain victims' life and in most cases the issue of reintegration depends up on treatment success. Data on how reintegration has fulfilled women's needs is sparse. Therefore, the aim of this study was to explore the needs and challenges of women on post obstetric fistula repair. Method: A qualitative, phenomenological approach was used through in-depth interviews to explore women`s perspectives on reintegration service. Respondents were selected by purposive and snow ball sampling until data saturation was reached. Women were interviewed at least one year after they obtained surgical correction. Open code version 4.03 and thematic analysis was used to analyze the data. Result: Twelve women after fistula repair were interviewed at different settings; their median age at interview was 27(range 24-45). Five were fully continent and six claimed to have either stress or urge incontinence. Repair sessions ranged between 1-5surgeries with an average period of 6.25 years after treatment. The meaning attached to reintegration slightly differed between those women who regained continence and those with unsuccessful repair. Surgical correction, resource support and restoration of social health were found to be the most important aspects of the service.
Financial difficulty, lack of counseling on fertility needs, lack of individual centered services and residual leaks were commonly reported challenges. Conclusion: Effective reintegration services should meet women's needs to the level of their anticipation. Challenges inherent in post repair reintegration require appropriate measures to mitigate dependency, loneliness and the recurrence of fistula. 3 Background Linking prevention and curative strategies with rehabilitation and social reintegration programs is recognized as essential to tackling fistula holistically (1).
Social re-integration is not only about reunification, but also finding alternative care if reunification is impossible (2) Physical limitations and other residual problems often hinder women's ability to work (3).Reintegration uses resources to make people capable of leading their daily life. For the reintegration, establishing rehabilitation centers, provision of literacy classes and skills training is important step to restore the women's productivity (4). It consists of individual centered interventions, by helping them identify their need and support in acquisition of the abilities and resources they need to succeed. It encompass economic, psychological, and social aspects (5). Successful surgical repair and reintegration practice enables women to resume household activities and social functioning (1). There are reports showing women's post repair quality of life has improved, and some treated women reported that they obtained clothing, soap, and transportation cost to return home on discharge (1). Despite findings showing that successful fistula repair can contribute to positive outcomes for the women and their families (6), and that reintegration has improved women's quality of life, nothing was said about the women's perspective on reintegration service and their challenges. Therefore the aim of this study was to explore women's perspectives on reintegration service and its challenges in Ethiopia.

Methods
Qualitative study design was used. Interviews were conducted with 12 women with repaired fistula during January-February 13, 2018. The women were enrolled in the 4 interview regardless of their repair outcome. The study purposively picked the initial participant and asked for referrals from the initial participants to find additional participants, until data saturation was reached. Women were interviewed after a minimum of one year following surgical correction. Open code version 4.03 and thematic analysis was used to analyze the data.
Semi-structured and open ended interview guides were used to explore women's views on reintegration service and identify its constraints. The tool consisted of points 1) Marital and obstetric fistula related data, 2 Two trained female nurses who have experience of qualitative data collection were employed for data collection. Prior to interview, informed consent was obtained from each woman for both participation and audio recording.
The audio-taped, qualitative data were transcribed verbatim and translated from Amharic to English. Two independent translators ascertained the quality of translation. Transcripts were read thoroughly and meaning units were extracted and condensed without losing quality and meaning. Codes were assigned to condensed data and grouped to themed categories. Finally thematic analysis was used to interpret the data.

Results
Twelve women after fistula repair were interviewed at different settings; their median age at interview and at development of the fistula was 27(range 24-45) years and 18 years respectively. They had lived with the condition for 3 months to13 years. Six had at least one or more living children. At the time of interview eight were divorced. They were either living alone, with their child or with their close family member (mostly mother). Repair sessions ranged from 1 to 5 surgeries with an average period of 6.25 years after treatment. After repair, five of them reported that they could control leaks completely and 6 claimed either accidental leaks when laughing or that they had difficulty in controlling or walking longer distances, standing for longer periods, doing laborious activities and bearing/carrying heavy things. One reported that she was incontinent at all times (Table 1). Surgical correction, resource support and restoration of social health were found to be the most important aspects of the service. Financial difficulty, lack of counseling on fertility needs, lack of individual centered services and residual leaks were commonly reported challenges.
Getting treatment and being productive Reintegration service was stipulated as getting treatment and as the opportunity to be linked with income generation services.
…..if government had not given attention to treat us (women with fistula) and not given the opportunity to work in the craft center, I might sit alongside for begging, because I don't have any support. I lost my marriage, my mother has died….

(3 years back treated woman)
They also talked about the service in terms of working in group, as they are doing in the craft center.
"…if we get sustainable and additional financial support we will continue our life making the hand crafts …what is more than this?" (Women previously working in the craft center) "….it is like the chance we get now, when fistula women work together to generate income…really I am pleased to thank the government for concerning itself with fistula patients and supported them to get treated for free….then training them to work in groups to be productive……this is more than enough.." (Women working in craft center)….

Resource support
They talked about it as enabling repaired women to help themselves through providing material, financial support and accommodation. Some focused on the direct provision of resources and the link to income-generating opportunities.
7 "…it is giving space to live in and some initial money for a woman to start a small business and help her lead her life….unless her life will be worsened"(divorced, For those with unsuccessful repair reintegration is mainly related with obtaining repair treatment for their fistula problem to return to their pre-fistula status. Lack of free health service after repair The women obtained fistula related treatments for free. But after they were repaired they were treated as everyone who is productive and are required to pay for health services. Since they were disconnected from their productive life before and during the treatment periods, and the support they obtained was not adequate for leading a life and covering health service costs, they requested health service access for themselves and their family for free or at least at a subsidized cost.

Discussion
These qualitative interviews gave an insight into women's perspectives on the 12 reintegration service in the study area. The meanings women attached to the service were consistent with services that most of them have obtained, such as: getting repaired, skills training, obtaining financial support, and working with women in similar scenarios to generate income. Women's reintegration concern among those whose fistulae were successfully repaired and those whose weren't was different. For those with persistent leaks their main issue was about physical repair. The success of surgery was the key component of reintegration that hastens complete recovery and found to be the priority need of patients with fistula. Similar to our study findings, different studies in Africa found that most repaired women regained continence, and successful fistula closure was the most important step in their reintegration (3,(7)(8)(9). Although some complained about urine spills with strenuous activity or coughing, many had improved continence and physical health that gave hope for returning to their pre-fistula life. Other studies also showed continence as the positive precondition for social reintegration (2, 3, 10).
All respondents acknowledged the availability of free fistula treatment, the stipend for transportation, housing, and food for the women and their accompanying partners at the time of their referral to treatment centers. After repair some of the women were trained on making handcrafts and received pocket money, including transportation costs to return home. Some were organized into groups to work in the established craft center. If a woman works in the craft center she is paid 700.00 ETB (26 USD) per month. And with this minimal amount of money they found difficulty to lead life. However, if they produce more materials they reported that they would have additional payment (bonus). But, the lengthy period required to substitute supplies or raw materials and for maintenance was found to be a challenge to their income and motivation. To overcome this challenge, women 13 working in the craft center would like to work independently if they had another support and space to work.
Those who received other support from the training were not self-reliant after their return. Some of the women sold received items (mobile telephone apparatus) to overcome encountered financial difficulty. And to pay for house rental, food, and children's school affairs. Some of them felt that the support did not take into account individual women's needs in terms of their reintegration needs, even if their social backgrounds may be similar. The women's service need depended on the extent of their acceptance back into their family and community, their fertility, and their skills in coping with challenges (1). They also felt that support was from organizations other than the government, and therefore requested 'government attention' and holistic support, including space to recuperate in their community and free health service until they fully recovered. A study in Kenya also revealed the need for government attention for holistic management of fistula (9).
Although different studies reported a high rate of successful fistula closure (1, 2, 11, 12), half of the respondents complained that they had stress or urge urinary incontinence, and one was persistently incontinent of urine. Five were fully continent, and the number of surgeries they had ranged between one and five with average period of 6.25 years after treatment. This is also consistent with studies conducted in Mali and Niger which revealed continence gain occurred within 5 years of care and with five or less surgeries (12). This is supported by a study conducted on the quality of life of women after fistula repair, and also explained that the problems are either known to be related or not related (1) .
Most women with incomplete closure continued to suffer from psychological problems, such as self-induced isolation and lack of self-esteem. Those with successful repairs were in fear of infertility and damage to their repair (13 professional advice and support at easy access as part of the reintegration service. Studies conducted in Eritrea and Kenya also magnified the need for a formal counseling service and its positive impact on improving women's knowledge of 15 fistula, in order to improve self esteem (9,14).
Those who perceived themselves healed resumed relationships, attended funerals, and visited friends. Although their feelings of loneliness were incomparable with that of pre treatment period, five of the women with unsuccessful repairs expressed that they were in fear of stigma emanating from the smell of leaked urine and they were struggling to establish interpersonal relationships. They expected the reintegration service would offer them another solution as reintegration is about providing alternative care (2). This study found that strengthening interpersonal relationships was the most important part of reintegration next to physical repair.
Therefore, rehabilitation and connecting women to their community is vital (3,9,15

Conclusion
The meaning attached to reintegration slightly differs between those women who regained continence and those with unsuccessful repairs. Surgical correction and resource support were found to be the most important services in reintegration.
Financial difficulty, a lack of counseling service for fertility, the lack of an individual centered service, and residual leaks were challenges identified requiring appropriate measures to mitigate dependency, loneliness and recurrence of fistula.
Effective reintegration services that meet women's needs to the level of their anticipation is equally important as physical repair and assistance on discharge to address consequences of obstetric fistula.

Declarations
Ethics approval and consent to participate Also they were informed that participation is voluntary, they do have the right to withdraw from the study at any time. Respondents were told the attainment of confidentiality and the information they give will not be used for any purpose other than study and their name and or house number or any identifications which refer to them will not be recorded. Therefore, codes were assigned and potentially identifying details were changed. They were interviewed in separate area keeping their visual and auditory privacy. Consent was obtained from each woman for both participation and audio recording

Consent for publication
Not applicable

Availability of data and materials
The qualitative data used to support the findings of this study are available from the corresponding author upon reasonable request.