1.1 Obstetric Fistula and the global context

Obstetric Fistula is a childbirth injury resulting in life altering physical and psychological morbidity. Accurate and reliable data on the burden of Obstetric Fistula is limited and it is estimated that between 500,000 and 2 million women are living with Obstetric Fistula globally [1, 2]. The majority of cases develop as a consequence of obstructed labour [3], leading to the formation of an abnormal opening between the vagina and either the bladder, rectum or both [4, 5]. Women who survive and then develop a fistula are left with uncontrollable leaking of urine and/or faeces from the vagina [5, 6]. Although presenting primarily as a medical complication of childbirth, Obstetric Fistula has complex causes. Social and cultural factors such as inequalities experienced by women and girls, child marriage and adolescent pregnancy coupled with the quality and availability of reproductive health services contribute to continued high rates of Obstetric Fistula [2, 6].

The continued incidence of Obstetric Fistula highlights the inequities experienced by women in low resource countries; since it has been almost eradicated in high income countries with well-developed health services [7, 8]. Obstetric Fistula is preventable when women have access to high quality, comprehensive maternal health services [9]. Obstetric Fistula disproportionately affects the poorest women, whose voices are scarcely heard, with the burden of disease resting predominantly upon poor and marginalised women and girls in Sub-Saharan Africa and Asia [6].

The need to support women and girls living with Obstetric Fistula, in addition to preventing the condition occurring, has been identified by research undertaken in Sierra Leone which aimed to shed light on the experiences of women suffering from the condition [10]. The 2030 Agenda for Sustainable Development/ Sustainable Development Goals (SDGs) provides an opportunity to advance gender equality and promote health and wellbeing for all [11, 12]. The principle to ‘leave no one behind’ is at the heart of the SDGs [12, 13]. Ending the needless morbidity and suffering associated with the continued incidence of Obstetric Fistula is key to ensuring women and girls with Obstetric Fistula do not get ‘left behind’ [12]. The United Nations (UN) Secretary General’s 2018 report on fistula [9] identified ending Obstetric Fistula as crucial to achieving many of the SDGs; particularly those relating to poverty, health, education, gender equality and inequalities. This report was followed by the UN resolution A/HRC/RES/39/10 on Preventable maternal mortality and morbidity and human rights in humanitarian settings, which was adopted by the Human Rights Council and calls for accelerated progress to end fistula with achievement of the SDGs within a decade [14].

The impact of Obstetric Fistula upon the lives of women affected is profound and debilitating; physical problems, if untreated, can result in premature mortality [4, 5, 9]. In addition to the serious physical consequences women face, there are numerous and enduring psychological and social implications [15–17]. The uncontrollable leaking of urine, constant wetness and odour mean women may experience stigma, discrimination or internalised feelings of shame, leading to depression and isolation [6, 15]. Furthermore, 90% of women will experience the sadness and loss of giving birth to a baby who is either stillborn or dies soon after birth [6]. Obstetric Fistula can also negatively impact household relationships and social networks [18].

Obstetric Fistula limits women’s ability to undertake activities to generate income, creates deepening poverty, economic dependence and increases their susceptibility to violence and abuse [4–6]. The myriad of physical, social, and psychological consequences translates into an increased risk of mental disorder, depression and suicide among women affected [9, 19–21].

The need to develop recovery strategies which meet the physical, psychosocial and economic needs of women affected and empower them to actively participate in the development of prevention and treatment programmes has been highlighted in the country-level needs assessments conducted in 29 countries in the Campaign to End Fistula [6]. Offering women affected by Obstetric Fistula the choice to undertake advocacy activities to raise awareness in communities of maternal and newborn care, safe birth, Obstetric Fistula prevention and treatment and dispel myths associated with the condition has been described an effective strategy for Obstetric Fistula prevention and treatment by the World Health Organization [5]. The role of Obstetric Fistula survivors in raising awareness of fistula prevention and treatment has been described in the 2014 and 2018 United Nations General Assembly Secretary-General Reports on ending Obstetric Fistula [9, 22]. A study exploring women’s experiences with fistula repair surgery in Malawi identified that women who have received successful treatment may serve as effective role models, illustrating the benefits of treatment in their community [23]. Furthermore, it has been suggested by the Campaign to End Fistula country-level needs assessments that the advocacy role has the potential to facilitate empowerment and reintegration of survivors [6]. However, there is limited evidence on the experiences of women affected by Obstetric Fistula, who become Advocates. This paper reports on an exploratory study into the experiences of Advocates, how they perceive their role, and its influence on their recovery.

1.2 Theoretical approach

This study explored a concept of recovery encompassing social reintegration and psychological well-being [24]; as the serious psychological and social effects of Obstetric Fistula on women including the associated risks of mental illness and suicide are well documented [20, 25, 26]. Therefore, literature related to mental health recovery is most theoretically relevant to apply to recovery from Obstetric Fistula. In 2007, Onken suggested using an ecological framework to conceptualise mental health recovery; proposing recovery relates to individual recognition that change is possible and systemic change within the individual’s environment and more importantly, the impact of interactions between the two [27]. This framework conceptualises recovery as both overcoming physical symptoms, stigma and social exclusion resulting from the illness [27]. Onken’s framework outlines four elements of recovery [27]. ‘Person-Centered Elements’ focusing on aspects of personal motivation; including the ability of the individual to make autonomous decisions and find meaning in their daily life, which is also influenced by their social context. ‘Re-authoring’ refers to an individual’s ability to re-define themselves, move forward and achieve personal goals following a traumatic experience through developing, taking ownership of and telling their own story. ‘Exchange-Centered Elements’ describe the ability of the individual to participate actively and meaningfully within their community, building on the concept of re-authoring; utilising the positive identity gained during that process to forge a new, powerful social role. Peer support is identified as a mechanism to create a positive social identity. ‘Community-Centred Elements’ relate to the presence of an environment which provides individuals with both their basic needs and the opportunity of nurturing relationships supporting reintegration into community life; without which recovery is not possible.

Data and analysis were compared to Onken’s ecological framework [27] to explore associations between themes; and with those identified in existing literature relating to recovery from Obstetric Fistula, specifically the complex relationship between individual recovery and the social environment.

2.1 Ethical considerations

Ethical clearance for this study was granted by both the Sierra Leone Ethics and Scientific Review Committee (SLESRC) and the London School of Hygiene and Tropical Medicine (LSHTM) Ethics Committee (Application number: 011/30).

2.2 Setting: Obstetric Fistula in Sierra Leone

At the time of the study, Sierra Leone was ranked 180 out of 187 countries with comparable data by the United Nations Development Programme (UNDP) Human Development Index [28]. The maternal mortality ratio was 890 per 100,000 live births, among the highest in the world [29].

Good quality data on the prevalence and incidence of Obstetric Fistula in Sierra Leone is limited [30, 31]. The inclusion of Sierra Leone as one of the focal countries in the United Nations Population Fund’s (UNFPA) global ‘Campaign To End Fistula’ indicates the magnitude of the disease burden in Sierra Leone [6, 32]. The researcher (ZV) attended Sierra Leone’s first National Conference on Obstetric Fistula in April 2012. At the meeting, the need to develop holistic treatment strategies, involving women affected by Obstetric Fistula as advocates for prevention and treatment, was emphasised. However, there is little known about the role of advocacy in survivors’ recovery and reintegration.

The Fistula Prevention Project (FPP) and study setting was Northern Bombali District. At the time of the study according to the 2008 SLDHS, women in the Northern region reported the highest rates of no education (77%) and illiteracy (84%) in the country [33]. Employment of women was high in the region [33], consisting predominantly of small-scale, informal agriculture [34], but control over earnings remained low. Of the women in employment, 46% reported use of earnings was mainly decided by their husband [33]. At the time of the study, this region had some of the poorest health indicators for women in the country, including the highest rates of teenage pregnancy (32.6%) and lowest rates of knowledge and use of contraception, (66% and 4% respectively). Only 27% of births in this region were attended by a Skilled Birth Attendant, compared to at least 50% in all other regions [33].

The FPP launched in 2008 in the Northern Bombali District in Sierra Leone. The aim of the project was to train women affected by Obstetric Fistula, who previously received surgical treatment, to become volunteer Fistula Advocates (hereafter, referred to as Advocates). This was undertaken in collaboration with Health Poverty Action (HPA), a Non-Governmental Organization (NGO), working in Sierra Leone since 2005. The purpose of the role was to deliver innovative community education to raise awareness of Obstetric Fistula prevention, actively look for other women living with Obstetric Fistula, provide peer support and facilitate referral for treatment; whilst simultaneously building Advocates’ confidence and skills.

The project provided an initial two-day training covering causes and prevention of Obstetric Fistula, how to refer patients for treatment, communication and advocacy skills and record keeping. A key material used during the training and by Advocates, was a picture book developed by HPA in partnership with Government of Sierra Leone Ministry of Health and Sanitation, Mercy Ships Fistula Centre (Now Aberdeen Women’s Centre), West African Fistula Centre, and women affected by Obstetric Fistula. The picture book illustrated the key messages around Obstetric Fistula prevention and treatment using the story of ‘Fatu’, a young girl who develops Obstetric Fistula following prolonged labour.

The Advocates received monthly supportive supervision visits from HPA field officers, participated in bi-annual Advocate Network meetings and received a token monetary sum (Le 20,000/ £3 per month) for their participation. Funding and programmatic changes to the FPP, proposed after this study was developed, were in progress when interviews were conducted.

2.3 Sampling

This paper draws on data from in depth interviews with Fistula Advocates (n = 7) participating in the FPP and Key Informants (KI; n = 3), Key Informants in this study were people who have first-hand or expert knowledge and experience of either care of women with Obstetric Fistula, Obstetric Fistula recovery or Advocate training and programming [35]. The KIs had roles in either clinical or outreach care for women with Obstetric Fistula or training and supervision of Advocates. Purposive or criteria sampling was used to identify a sample of 7 Advocates and 3 KIs with a range of experiences.

This sample size is in keeping with other studies on the experiences of women living with Obstetric Fistula [36]. The sample was chosen through discussions with project staff, thinking critically about participants most likely to provide rich data to answer the research question effectively [37]. Women with a range of experiences of becoming an Advocate and recovering from Obstetric Fistula including those of different ages, who had lived with Obstetric Fistula for different durations, with and without living children were included in the study. The KIs were selected for their knowledge and experience of either Obstetric Fistula, Obstetric Fistula recovery or Advocate training and programming.

2.4 Characteristics of participants

The characteristics of participants are summarised in Table 1. All participants invited to take part in the research agreed to participate. No Advocates were able to report their age. All Advocates reported being married as young girls, becoming pregnant soon after; six out of the seven Advocates interviewed developed Obstetric Fistula during their first birth. Number of years spent with Obstetric Fistula prior to repair surgery ranged from <1 to > 20, demonstrating the age diversity of participants. All Advocates reported no education, none were literate or able to write their name. All Advocates had previously received surgical treatment; only one requiring more than one operation to be successfully repaired. To preserve anonymity limited information is provided on the characteristics of KIs due to the small number of people working on Obstetric Fistula in Sierra Leone.

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Table 1. Participant characteristics.

https://doi.org/10.1371/journal.pgph.0000765.t001

2.5 Data collection

Interviews were conducted in 2012 face to face by the researcher (ZV) and a research assistant from HPA (AK) who assisted with translation. Interviews were conducted in a location chosen by the participant. All but one interview with Advocates occurred in or near their homes, in a setting where they felt comfortable to talk to the researcher; one interview took place in a private room in HPA field office. Interviews with KIs took place in a private room in their workplace. Each semi-structured interview lasted approximately 45–60 minutes. During part of the interview participants were asked questions relating to their experience of living with Obstetric Fistula prior to and post repair surgery. This is a sensitive topic, as women living with Obstetric Fistula may have experienced stigma and social exclusion. The information given made clear that agreeing to participate did not mean requirement to answer any question found difficult or distressing. Women reporting health concerns were advised to seek advice from the Peripheral Health Unit or Hospital according to their location and symptoms.

Four interviews were conducted in Krio; the researcher (ZV) (who had basic Krio language skills) worked alongside the research assistant (AK) who assisted with translation or clarification when required. Three participants did not speak Krio or preferred to be interviewed in their local language. Therefore, two were in Temne and one in Limba.

A field diary of daily activities, informal conversations with participants, meetings with HPA field and project staff and notes from the National Conference was documented throughout the research process. This process enabled ideas to be captured adding depth and context to the interview data [38].

All the Advocates interviewed were illiterate; therefore, information leaflets were translated verbally into either Krio or their local language. All participants were given the opportunity to ask questions, decline to participate and finally asked to provide formal written consent prior to participation in the study, (indicated with a thumbprint if unable to write their name which is common practice in Sierra Leone).

2.6 Data management and analysis

Interviews conducted in Temne or Limba were translated verbally into English immediately after the interview and transcribed in English; translation was discussed between the first author (ZV) and third author (AK) (fluent in Temne, Limba, Krio and English). Interviews conducted in Krio, were translated, and transcribed by the first author (ZV) with clarification sought from the third author (AK) when required. Data was managed using NVivo Version 9.2.

The analytical process was iterative and commenced during data collection. The detailed field notes, describing the context within which interviews occurred and key themes and concepts, were referred to throughout the analysis. A six-phase process of thematic analysis starting with data familiarisation through reading and re-reading of the interview transcripts and making detailed notes; analysis with initial codes labelled in NVivo; searching for themes by sorting and clustering codes; as analysis continued reviewing themes and relationships between them identified; defining and naming themes before finally producing the written report [39]. Engaging with the data thoughtfully and maintaining a reflexive stance enhanced the quality of the analytic process [40]. Triangulation of research findings within and between interview data, field and conference notes, and with existing research, was used to increase validity of the findings [41]. Interview data from Advocates and KIs was triangulated to gain a broader perspective of the Advocate role and recovery from Obstetric Fistula. The perspectives of the clinical and outreach staff gave additional insights into the opportunities and limitations of the Advocate role.

3.1 Central organising concept: Renegotiating stigma and social relationships as an advocate

In thematic analyses, themes should coalesce around a central organising concept [42], which for these data was identified as ‘Renegotiating Stigma and Social Relationships as an Advocate’. The influence of both social relationships and the social environment on the recovery process was identified. The importance of an environment facilitating treatment opportunities, which leads to increased social participation and acceptance, was expressed by participants. Increased social integration and power within social interactions due to the advocacy role were described. All Advocates reported social support from; family, husbands or both whilst living with Obstetric Fistula, during treatment and beyond.

4.1 Strengths, limitations, and future directions

This paper adds to the limited qualitative data on Advocates perception of both their role and its influence on their recovery and reintegration following Obstetric Fistula. A strength of this paper is that interview topic guides were informed by a literature review, the researcher’s knowledge and experience of the country context, and discussions with relevant experts including programme managers, field staff and a Sierra Leone Ministry of Health and Sanitation researcher. A longer timeframe and a more diverse sample would potentially generate a deeper understanding of the advocacy role in recovery of women affected by Obstetric Fistula; however, the sample size was appropriate for this study design, reflecting the exploratory nature of the study, other studies on the experiences of women living with Obstetric Fistula [36], and the resource and time constraints of the project [63]. Furthermore, although some time has elapsed since these data were collected and initially analysed, key qualitative methods scholars have previously commented on the benefit of time in qualitative analyses [64]. Women of a variety of ages, who had lived with Obstetric Fistula for different durations, with and without living children were included in the study. However, there was homogeneity in the sample population as all Advocates had previously received surgical treatment, reported being married as young girls, becoming pregnant soon after; and reported no education. To facilitate a high-quality dialogue individual interviews were used, these enabled women speaking three different local languages, to participate without the challenges of interpretation into multiple languages a group setting would have presented. The researcher’s familiarity with the topic, local culture and Krio language facilitated development of rapport during interviews which also supported a high-quality dialogue.

Onken’s ecological framework [27] was used to understand interview data; as it enables exploration of key themes identified in existing literature relating to recovery from Obstetric Fistula, specifically the complex relationship between individual recovery and the social environment.

Formally employing Advocates has the potential to provide meaningful employment and income generation opportunities; whilst accelerating Obstetric Fistula prevention and treatment. Undertaking further qualitative research focusing on the experiences of women affected by Obstetric Fistula providing and receiving peer delivered services and quantitative research to measure the impact on prevention, treatment and recovery is warranted. Further research exploring the impact of providing or receiving peer support on the recovery of women unable to be successfully treated would be useful to inform strategies for this group at particular risk of social isolation.