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Restoring dignity: Social reintegrationafter obstetric fistula repair inUkerewe, TanzaniaRachel Pope a , Maggie Bangser b & Jennifer Harris Requejo c d ea Medical School for International Health , Ben-Gurion Universityin collaboration with Columbia University Medical Center , NewYork, NY, USAb Formerly Women's Dignity, Dar es Salaam , Tanzaniac Institute for International Programs , Johns Hopkins BloombergSchool of Public Health , Baltimore, MD, USAd Department of Reproductive Health and Research , World HealthOrganization, Partnership for Maternal, Newborn, and ChildHealth , Geneva, Switzerlande Partnership for Maternal, Newborn, and Child Health , Geneva,SwitzerlandPublished online: 04 Mar 2011.

To cite this article: Rachel Pope , Maggie Bangser & Jennifer Harris Requejo (2011) Restoringdignity: Social reintegration after obstetric fistula repair in Ukerewe, Tanzania, GlobalPublic Health: An International Journal for Research, Policy and Practice, 6:8, 859-873, DOI:10.1080/17441692.2010.551519

To link to this article: http://dx.doi.org/10.1080/17441692.2010.551519

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Restoring dignity: Social reintegration after obstetric fistula repair inUkerewe, Tanzania

Rachel Popea*, Maggie Bangserb and Jennifer Harris Requejoc,d,e

aMedical School for International Health, Ben-Gurion University in collaboration with ColumbiaUniversity Medical Center, New York, NY, USA; bFormerly Women’s Dignity, Dar es Salaam,Tanzania; cInstitute for International Programs, Johns Hopkins Bloomberg School of PublicHealth, Baltimore, MD, USA; dDepartment of Reproductive Health and Research, World HealthOrganization, Partnership for Maternal, Newborn, and Child Health, Geneva, Switzerland;ePartnership for Maternal, Newborn, and Child Health, Geneva, Switzerland

(Received 20 February 2010; final version received 18 October 2010)

This study explores barriers and facilitating factors women experience re-integrating into society after treatment of an obstetric fistula in rural Tanzania.A total of 71 women were interviewed in the Mwanza region of Tanzania,including a community control group. The majority of the women who receivedsuccessful surgical repairs reported that, over time, they were able to resume manyof the social and economic activities they engaged in prior to the development ofa fistula. Familial support facilitated both accessing repair and recovery. For 60%of the women recovering from an obstetric fistula, work was the most importantfactor in helping them feel ‘normal again’. However, physical limitations andother residual problems often hampered their ability to continue working. All ofthe treated women expressed interest in follow-up discussions with health careproviders regarding their health and concerns about future pregnancies. Specialattention is needed for women who are not completely healed and/or for thosewho experience other related medical or emotional problems after repair,especially if they lack a social network.

Keywords: obstetric fistula; vesico-vaginal fistula; Tanzania; social reintegration;perceived quality of life (PQoL)

Introduction

An obstetric fistula typically results from prolonged and obstructed labour. The

constant pressure of the foetal skull in the birth canal reduces blood supply to the

tissues, causing the tissues to die and eventually slough off leaving a fistula. This

results in the constant leaking of urine and/or faeces through the vagina. Women

with fistulae also often sustain an extensive range of other injuries referred to as the

‘obstructed labour injury complex’ (Arrowsmith et al. 1996).

A girl or woman with a fistula may be ostracised from her community because of

the smell caused by the constant flow of urine and/or faeces, or she may isolate herself

out of embarrassment (Bangser 2006). Often, she must face the challenges of coping

with divorce and a decreased ability to earn a living. In areas with limited public

education on obstetric fistulae, affected women may also not be aware of available

*Corresponding author. Email: rachel.pope@gmail.com

Global Public Health

Vol. 6, No. 8, December 2011, 859�873

ISSN 1744-1692 print/ISSN 1744-1706 online

# 2011 Taylor & Francis

http://dx.doi.org/10.1080/17441692.2010.551519

http://www.tandfonline.com

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treatment options (FIGO 2006). There are an estimated two million women worldwide

living with an obstetric fistula and an additional 50,000�100,000 new cases arising each

year (Murray and Lopez 1998). Some estimates place the prevalence as high as 3.5

million, with cases concentrated primarily in underserved African and Asian contextswhere women do not have access to needed obstetrical care (Wall 2006).

In Tanzania, an estimated 2500�3000 new obstetric fistula cases occur each year

(Raassen 2006), yet there are only 30 doctors currently trained in fistula repair and

around 1000 repairs done annually (Tanzania National Fistula Program 2007). Thus,

the prevalence of women living with a fistula continues to grow. There is now a cadre

of women in Tanzania who have undergone fistula repair. However, little follow-up

has been conducted with these women. This represents a missed opportunity to learn

about what successful repair means to affected women, and the factors associatedwith their ability to resume normal social relations and work activities.

This study examines the relationship between surgical outcomes and women’s

perceived quality of life (PQoL). The study was conducted in April and May 2007 in

Ukerewe, the site of a previous study on obstetric fistulae and where at least 15

affected women were known to have received surgical repair (Women’s Dignity

Project and Engender Health 2006). This exploratory research uses a mixture of

qualitative and quantitative methods to compare affected women’s PQoL post-repair

with the PQoL of non-affected women living in the same communities and with thePQoL of women awaiting repair.

Methods

Study location

The study was conducted in Ukerewe and at Weill Bugando Medical Centre (WBMC),

the regional referral hospital serving Ukerewe. WBMC is located in Mwanza city, thecapital of Mwanza region, and is a three-hour ferry ride from Ukerewe. At the time of

the study, approximately 200 fistula cases were being repaired annually by the medical

centre’s three staff surgeons and occasional visiting experts.

Ukerewe is part of the Mwanza region and is an archipelago of 640 km2 in Lake

Victoria. Ukerewe is densely populated with a total population of approximately

300,000. The main economic activity is agriculture, and most women are responsible

for producing both food and cash crops. Three main ethnic groups live on the

archipelago: Jita, Kara and Kerewe. Female circumcision, a risk factor for obstetricfistula, is not generally practiced. There are 26 dispensaries, three health clinics, and

one district hospital in the main city of Nansio. At the time of the study, only one

doctor, three assistant medical officers, and two nurse midwives were working at this

hospital in Ukerewe (Wilaya ya Ukerewe 2006).

Study sample

Purposive sampling and snowball techniques were used to select the study population.

We interviewed three groups of women: (1) Affected women who had already received

treatment and returned to their communities (n�25), (2) Non-affected women

matched by age and socio-economic circumstances to the women in Group 1 (n�25),

and (3) Affected women awaiting surgery or discharge (n�21).

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Table 1 shows that all three groups of women are comparable in terms of age,

years of education, occupation, age at marriage, and age at first birth. The majority

of Group 1 participants were identified by a public health nurse knowledgeable about

women in Ukerewe with a history of a fistula and based at the district hospital inNansio. The nurse asked any woman she was aware of who had been repaired if she

would be willing to participate in the study. Study participants referred us to three

other women who had undergone surgical repairs that they knew either from their

communities or from the time spent recovering in the hospital. Nurses working at the

local dispensaries also informed us of several women whose fistula had been repaired

at WBMC but whose medical records were not available at the district hospital.

Women from Group 1 referred us to potential participants for Group 2, which is

the control group. Group 2 participants included neighbours and relatives of age andsocio-economic circumstances similar to those of women in Group 1, but with no

history of an obstetric fistula. Women awaiting treatment or who were recovering in

the fistula ward post-surgery were selected for Group 3. This group allowed us to

obtain information on women’s expectations about surgical repair and the re-

integration process. Written or verbal informed consent was received from all women

who enrolled in the study.

Ethics

The Institutional Review Board of Case Western Reserve University, the Tanzanian

Commission of Science and Technology and the National Institute for Medical

Research approved this study.

Table 1. Demographics of study participants.

Group 1: Women

whose fistula was repaired

(n�25a)

Group 2: Women

without fistula

(n�25)

Group 3: Women

currently in

hospital (n�21)

Median current

age (range)

35 (19�78) 34 (19�80) 0 (19�68)

7 (0�11)

Median years of

education

(range)

7 (0�10) 7 (0�13)

Occupation 22 (88%)

farmers

22 (88%)

farmers

21 (100%)

farmers

Median age at

(first) marriage

(range)

19 (14�30)

four never married

20 (14�26)

two never married

18 (15�32)

two never married

Median age at first

birth (range)

18 (13�26) 20 (15�27) 20 (16�32)

Median age at

fistula (range)

22 (13�37) NA 26 (18�42)

Number of

children (range)

1 (0�7) 5 (1�11) 2 (0�6)

aAlthough these women have been repaired, they may not consider themselves healed due to residualleaking.

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Data collection tools

A mixture of qualitative and quantitative methods was used to gain insight into the

reintegration expectations and experiences of women following fistula repair.

Specifically, these methods were used to explore the social and physical factors

influencing women’s ability to reintegrate post-repair, and compare the quality of life

of affected and non-affected women living in the same communities.

Qualitative methods

The qualitative methods consisted of semi-structured interview guides and a social

map. The interview guide for women in Group 1 covered the following topics:

(1) Marital and reproductive history

(2) Life perceptions before developing a fistula, while living with a fistula andafter receiving repair

(3) Factors that hindered and facilitated these women’s ability to reintegrate into

the society. Example questions included the following: ‘What specifically

helped you to begin life again? Was anyone or anything particularly helpful?

What, if any, troubles did you experience?’

Women in Group 1 also completed a social map identifying the individuals most

important in helping them seek treatment and re-assimilate into their communitiesafter repair (Tracy 1990). The interview guide was modified for women in Groups 2

and 3. The questions about life changes after developing a fistula and following

repair were replaced with questions about birth experiences for women in Group 2

and the transition to motherhood for women in Group 3.

Quantitative methods

Two existing tools were modified and pre-tested with a small group of women who

had received repairs. The PQoL tool (Patrick 2000) measures an individual’s

perception of her quality of life and is based on a 10-point scale ranging from

‘completely unhappy’ to ‘completely happy’. It was adapted for this study to fit the

rural Tanzanian context and assess women’s physical and mental health, degree of

social support and economic well-being. It was converted to picture format to enable

illiterate women to participate. The second tool, the RNLI (Daneski et al. 2003), isan index that measures return or reintegration to normal living. It is also a 10-point

scale, with 0 considered not reintegrated and 10 indicating full reintegration. A few

questions on the RNLI tool were revised for applicability to the study setting. This is

the first time these survey tools have been used in Tanzania and among women living

with, or recovering from, an obstetric fistula. We explored their potential application

for future research on reintegration in similar settings.

Data collection process

Each study participant was interviewed at a location of her choice where she could

speak freely. The interviews lasted approximately two hours. All questions were

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pre-tested (and revised if necessary) for cultural relevance with a small group of

Tanzanian women from rural areas who had received fistula repair in Dar es Salaam.

The interviews were conducted by a native Swahili speaker trained in the social

sciences and experienced in conducting in-depth interviews. Additional notes weretaken by another trained researcher. All but one participant agreed to have their

interviews digitally recorded. The public health nurse involved in the sample

selection process attended the interviews and translated responses from the local

dialect into Swahili when necessary.

Data analysis

After each interview was conducted, the two researchers compared notes and

addressed any discrepancies. The interviews were then translated into English and

entered into Microsoft Word. The translated interviews were reviewed against the

digital recordings for accuracy. Qualitative data was analysed for overall themes as

well as outlier experiences. Similar experiences were coded and organised by responseto the following research questions: (1) How well do women socially reintegrate post-

repair? What are women’s experiences reintegrating into society? (2) How do the

economic and social lives of women recovering from an obstetric fistula compare to

women in their communities without such a history? (3) What factors facilitate

successful reintegration? (4) What are the major barriers to reintegration?

The quantitative data was compiled in an Excel spreadsheet and scored for each

individual and group in order to identify any statistically significant factor

influencing reintegration. Basic descriptive statistics, Pearson correlations and one-way ANOVAs were calculated using SPSS statistical package. We hypothesised that

several specific factors would influence PQoL and reintegration including length of

time living with a fistula, marital status, number of children and length of time since

the fistula. For Group 1, PQoL scores were analysed for several time periods

including before the fistula occurred, when living with a fistula, one month after

repair, one year after repair and at the time of the study (Figure 1).

Results

The qualitative and quantitative results are presented by major themes identified that

influence women’s reintegration experiences. The quantitative results, although based

Figure 1. Average PQoL over time (Group 1).

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on small sample sizes, complement the qualitative findings and provide support for

the women’s testimonies.

Resuming responsibilities and social roles

The majority of women in Group 1 were able to resume their household and farmingresponsibilities post-repair. By one year post-repair, over two-thirds (68%) of the

women who perceived themselves healed or mostly healed report feeling ‘themselves

again’. Looking towards the future, most hoped that they could continue working in

the fields, engage in small trade, ‘bring children to school’ and ‘maybe build a home’.

Most treated women (99%) did not link their physical condition to economic

problems. As one woman explained, ‘life is tough, but that doesn’t affect anything

economically’. However, the majority of women (60%) in Group 1 reported that

being able to work again, principally in the fields doing agricultural labour, was themost important factor in their reintegration process. The major barrier to working in

the fields was the time needed to physically recover from the surgery. Those who

experienced difficulties resuming their expected social roles after treatment men-

tioned that they were afraid that they would develop another fistula from physical

exertion or sexual activity and/or experienced a lot of pain and weakness while

working. Forty-eight per cent of the treated women reported persisting physical

problems.

Women’s social roles following repair

The major differences between women recovering from an obstetric fistula (Group 1)

and those without a history of a fistula (Group 2) is that women in Group 1 have

fewer children and are less likely to be married (Tables 1 and 2). The majority of the

women (60%) in Group 1 were multiparous at the time they developed an obstetric

fistula. Twenty-two of the index pregnancies in this group resulted in stillbirths. Ten

(56%) of the women (n�18) were divorced by their husbands shortly after

developing an obstetric fistula. The majority of these women expressed no interest

in men or marriage: ‘I don’t even want to come near men now. My uterus wasremoved. If I can’t have children, what are men for? Might just get diseases . . . ’

Thirty-two per cent of the women in Group 1 stated that they desire more

children, while others explicitly reported not wanting more. Some can no longer

have children due to a hysterectomy (n�1), spontaneous abortions (n�2) or

Table 2. Marital status across groups.

Group 1: Women whose

fistula was repaired

(n�25a)

Group 2: Women

without fistula

(n�25)

Group 3: Women in

hospital

(n�21)

Current

marital

status

56% of those ever married

(n�18), were divorced

4.3% of those ever

married (n�23), were

divorced at any time

16% of those ever

married (n�19) were

divorced

aAlthough these women have been repaired, they may not consider themselves healed due to residualleaking.

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menopause (n�5). One woman expressed her fear of developing another fistula as a

reason for not wanting more children. Another woman who developed a fistula

following two pregnancies explained: ‘It’s better that I don’t have any children at

all . . . I told the doctors at Bugando to just cut out my uterus, but they refused.’ At

the time of the study, only three women who had undergone surgery had successfully

delivered a live baby. Only one of the 10 women who developed a fistula during a first

birth had attempted a second pregnancy, which resulted in another fistula.In contrast, 88% of the women without history of a fistula (Group 2) are married

and 76% reported that daily activities did not change after the births of their

children. Fifty-six per cent reported no major physical problems but mentioned

frequent backaches and abdominal pains similar to the concerns voiced by women in

Group 1. Fifty-two per cent reported other problems such as physical weakness,

economic hardships and emotional issues such as sadness over the loss of children.

Six women experienced the death of a child in different ways and at various ages.

Most (72%) reported that they do not want more children. Their hopes for the future

include keeping their children in school as long as possible and doing more business

for themselves.

The quantitative data results complement the qualitative findings and provide a

useful comparison of the scores of women in Group 1 and Group 2 (Table 3). The

average PQoL score of Group 2 (M �5.95, SD�1.31) is significantly higher than that

of Group 1 (M �1.81, SD �1.63) (F(1,48) �97.9, p �0.001). Although the median

PQoL score of women who have never had a fistula is lower than that of treated

women, the range was narrower. Similarly, the mean RNLI of Group 2 was higher

(M �8.82, SD �1.74) compared with that of Group 1 (M �7.72, SD �2.54), and

the difference was marginally significant, F(1,48) �3.2, p �0.08. The median RNLI

of Group 2 was also higher and the range was narrower, suggesting that the scores of

non-affected women of similar age and socio-economic characteristics could be used

as a standard measure for assessing the degree of reintegration.

Long-term consequences of a fistula

Some women whose fistula had been successfully repaired noted that their bodies are

‘just not the same as before the fistula’. Many expressed fear of developing another

fistula in future pregnancies. Many women reported struggles with economic

difficulties, emotional problems resulting from losing their child during the

pregnancy ending in the fistula and physical problems including pain when farming,

Table 3. PQoL and RNLI scores, Group 1 and Group 2.

Group 1: Women whose fistula was

repaired (n�25a)

Group 2: Women without fistula

(n�25)

PqoL

median

7.64 (r: 0�10) 6.14 (r: 2.71�7.25)

RNLI

median

9 (r: 0�10) 9.25 (r: 5�10)

aAlthough these women have been repaired, they may not consider themselves healed due to residualleaking.

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headaches, backaches, heart palpitations and abdominal pains. Seventy-six per cent

indicated that they need further medical attention, mostly for abdominal and back

pains.

Access to follow-up care

The women in Group 1 received pre-operative counselling and guidance on the

recovery period at discharge. However, they were not able to obtain post-treatment

counselling services after discharge. Participants indicated that their follow-up

questions could be readily handled at local clinics and desired more health care

facilities built near their villages. Women stated that they have specific questions

about sexual function and fertility and wanted to have access to a provider to answer

these and others they might have in the future.

Family support

Women whose fistula had been successfully repaired described their transition back

into their communities as ‘easy’, especially if they had family support. Among the

women in Group 1, 68% reported that help from family members with chores or with

starting businesses made it easier for them to reintegrate into their communities. One

woman, age 16 and unmarried when she developed a fistula, commented that ‘It was

not easy to start life again because I couldn’t do anything at first, but I didn’t have

problems because my relatives supported me . . . my sister gave me money for basic

needs, and doing farming helped me start life again’.

Although women were usually allowed 2�3 weeks to heal in the hospital post-

repair, most felt that they needed more time to recover. Women living far from the

hospital opted to stay with relatives living close to WBMC until they felt ready to

make the long journey home. Most were unable to immediately return to work in the

fields. Those who attempted to work soon after their surgeries reported feeling too

weak or sick and needing to rest. Sixty per cent of Group 1 lived with parents after

surgery, and nearly all reported needing someone to help them at home while they

recovered (typically a sister or mother).

The social mapping exercise showed that the key individuals to help women

reintegrate were often the same who helped them access treatment services. They

included neighbours, parents, siblings, other relatives and their health workers. These

individuals assisted by doing chores; buying soap, lotions and clothing and ensuringthat they had what they needed if the family went to the field for the day. They also

gave women money, paid for their transport for treatment and visited them after

surgery.

Women in the study community are generally dependent upon their broader

family network for financial security. Most of the women in Group 1 were not

financially independent before developing an obstetric fistula. This dependency

continued or increased during the treatment and recovery periods, particularly

amongst those who were abandoned by their husbands/partners. Women in Group 1

whose husbands/partners had abandoned them (n�10) typically returned to their

parents’ homes, moved in with a married sister or relied upon neighbours and nearby

relatives for assistance post-repair.

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Time as a key factor in the healing process

Several specific factors were examined in association with PQoL and RNLI

including length of time living with a fistula, marital status, number of children

and length of time since the fistula repair. The length of time since repair was the

only statistically significant correlate for increased PQoL and RNLI scores (PQoL:

0.530, p B0.01, and RNLI: 0.339, p B0.05). At the time of the study, the average

length of time since the repair was 4.5 years and ranged from one month to 13 years.Eighteen of the 21 women who received treatment more than one year prior to study

enrolment required at least one year post-discharge to reach PQoL scores that

matched their scores for the time period before they developed a fistula. Figure 1

illustrates that the average PQoL score was lowest during the period when women

were living with a fistula and steadily increased over time after surgical repair.

Leaking of urine post-operatively

Eight of the 25 women in Group 1 do not consider themselves healed. Five have

stress urinary incontinence (SUI) symptoms such as leaking when coughing, twohave fistulae that were not successfully repaired and one has other gynaecological

problems. All eight report lower levels of social support and lower PQoL and RNLI

scores than the average of Group 1. The two whose fistulae were not successfully

repaired scored the lowest on the PQoL and RNLI tools. Because of her severe SUI,

one of these women believes that she still has a ‘hole’ despite her physician’s

reassurance.

Social stigma and community awareness campaigns

Most of the women in Group 3 had developed a fistula more recently than those in

Group 1. In general, these women reported that they do not anticipate encountering

any major difficulties when they return home. Three anticipate problems with

farming, especially if their surgeries are not completely successful and one woman

expressed concerns about developing another fistula. Most are eager to start working

in the fields again. Only one woman reported that she expects her husband will leave

her now that she might have difficulty having more children: ‘I don’t think my

husband will stay with me if I can’t bear children anymore . . . I just pray to be healedso as to continue business, this will help.’

Importantly, and in contrast to the reports of the women in Group 1, only one

woman out of the 21 in Group 3 experienced community mistreatment while living

with an obstetric fistula. Five of the 21 women were referred to WBMC directly

after their deliveries and never interacted with community members when they

were experiencing symptoms such as incontinence. Five were told to go home for

three months (one said this was to heal from a Caesarean section) and then return

to the hospital for treatment. The other 11 women in Group 3 reported thatneighbours and family ‘just encouraged [her] to get treatment at the hospital’. The

average length of time between a fistula occurrence and repair in Group 3 was 1.2

years, with a range of two weeks to 10 years living with a fistula, whereas Group 1

lived with a fistula on average seven years, ranging from two months to over 20

years (Table 4). The average PQoL for Group 3 dropped from 7.55 out of 10 for

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the time interval before a fistula development to 3.44 (SD�2.10) for the time

period while living with a fistula. In contrast, the average PQoL of women in

Group 1 while living with a fistula was 1.81 (SD�1.63). RNLI was not taken intoaccount since these women were in varying degrees of transition. Of the women

who developed a fistula in the year 1999 or later (n�11), none were ‘shunned’ by

their communities, few were divorced by their husbands and all received treatment

services within one year.

Discussion

Similar to our study findings, two recent studies in Ethiopia (Browning and Menber

2008, Nielsen et al. 2009) found that most women experience improvements in their

quality of life post-repair. The majority of women in Group 1 reported that it was

easy to ‘start life again’, although about half reported experiencing remaining

physical problems (pains, weakness, residual leaking, etc.). These remaining physical

problems appear to lengthen the reintegration process. It is important to note,

however, that back and abdominal pains were also experienced by women without a

history of a fistula. Thus, some of the physical symptoms reported by women inGroup 1 may reflect a combination of residual pain from the obstetric fistula plus the

consequences of the hard agricultural labour women in the study setting typically

endure.

As shown in our study as well as in several others, a proportion of women

continue to suffer from urinary incontinence after repair (Gutman et al. 2007,

Browning and Menber 2008, Nielsen et al. 2009). Because we did not verify this

clinically, we did not assign the degree of incontinence to a scale. Most of the women

in our study with residual SUI and those with an unsuccessful repair do not considerthemselves healed, are not well-integrated into their communities and report low

levels of PQoL. These individuals require additional psychological and medical

support. Pelvic floor exercises might improve the symptoms of SUI, and other

surgical options may be available for these women. The risk of medical complications

and the lack of cultural acceptance to outcomes of surgical alternatives, such as the

need to use a urostomy bag, often make alternate surgical options unacceptable to

women. It is imperative that new repair techniques continue to be explored to

prevent residual incontinence post-repair (Browning 2004, Gutman et al. 2007).Although Nathan et al. (2009) found that many fistula patients in Benin did not

request reintegration assistance, our study indicates that women have concerns about

health issues resulting from an obstetric fistula and would benefit from counselling

services after hospital discharge.

Table 4. Length of time with a fistula and PQoL, Group 1 and Group 3.

Group

Time spent with a fistula before

repair

Average PQoL during time of the

fistula

1: Women repaired

(n�25)

7 years (r: 2 months�20�years)

1.81 SD: 1.63

3: Women in hospital

(n�21)

1.2 years (r: 2 weeks�10 years) 3.44 SD: 2.10

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Most women in Group 1 did not link their economic hardship with their physical

condition. This could be a reflection of the precarious subsistence style of life for all

women living in the study setting. The impact of an obstetric fistula on women’s

financial situation appears to be an additional strain and is particularly pronounced

for women who were abandoned by husbands/partners and those who were most

financially dependent even before developing a fistula. Our findings do suggest that

women may need to engage in less strenuous work for at least one year after surgeryto allow them to fully recover. Browning and Menber (2008) similarly report physical

strain as a barrier to complete recovery after fistula repair in Ethiopia. These

findings suggest the need for alternative income strategies for at least the first year

post-surgery. This long time frame can be particularly problematic for women

abandoned by their husbands and without sufficient social and economic support.

Because of the positive influence of work on women’s perceptions of their quality of

life, alternative non-labour intensive ways to generate income need to be made

available to recovering women.

Our study results are consistent with other reports about the short- and long-

term psychological consequences of women living with and recovering from an

obstetric fistula (Browning et al. 2007, Browning and Menber 2008, Nielsen et al.

2009). For example, some treated women reported that their bodies are ‘just not the

same as before the fistula’, and several women expressed fear of developing another

fistula. These findings suggest the importance of making psycho-social services

available to women after repair, especially for women with continuing incontinence(Goh et al. 2005, Browning et al. 2007).

The quantitative data demonstrate a dramatic improvement over time in PQoL

for women after repair. The PQoL scores of women in Group 1 are higher on average

in the most recent time period than those of the control group of women in the

community. This could indicate the impact of successful repair and reintegration on

women’s perception of their quality of life. The decrease in PQoL for Group 3

confirms the immediate negative impact of a fistula on a woman’s quality of life.

Length of time since repair was the only statistically significant correlate for

increased PQoL and RNLI scores, suggesting that women’s ability to successfully

reintegrate improves over time. The higher average RNLI of women in the

community without a history of a fistula (Group 2) indicates that RNLI may be a

reliable tool for measuring reintegration, assuming this group is representative of the

local standard of a woman who is ‘integrated’.

Women who considered themselves successfully repaired reported experiencing

an easy transition home after surgery and acceptance in their communities �especially those with family to support them. The individuals identified as helping

women recover fully from surgical treatment are generally the same as those

instrumental in helping them access repair services. There were only a few cases of

women who did not have a support network to help them during the recovery period.

This lack of support was extremely detrimental to these women in terms of both

emotional and economic stability. These individuals scored the lowest on both PQoL

and RNLI tools.

The major differences between women with and without a history of a fistula are

current marital status and the total number of children. On the one hand, many

women in our study were abandoned by husbands/partners, yet none of the women

with three or more children before developing a fistula were divorced by their

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husbands. Women who develop a fistula during a first pregnancy and are abandoned

by their husbands/partners are at increased risk of experiencing severe financial and

social consequences. This highlights the importance of childbearing to women’s

social status in the study setting. Despite the social status women gain in Ukerewethrough marriage and childbearing, a few women expressed a lack of desire for

children or marriage after repair. This is an important issue that should be further

investigated and addressed as part of follow-up care. Johnson et al. (2009) report

promising preliminary findings on formal counselling programmes for fistula

patients in Eritrea. Culturally appropriate counselling either prior to or after

hospital discharge may well have similar success in Tanzania.

Data from our study on divorce rates among women who endured a fistula reflect

similar findings from earlier research in the study area (Bangser et al. 1999). However,our findings contrast with reports from Ethiopia that indicate that few women are

divorced after developing an obstetric fistula (Nielsen et al. 2009). The noted decrease

in women experiencing community ‘shunning’ if they developed a fistula after 1999

may be related to the effects of an awareness campaign in the area carried out as part of

a comprehensive fistula programme conducted by WBMC in the mid- to late 1990s.

This campaign included radio announcements explaining the causes and consequences

of obstetric fistula. The campaign might also explain the decreased time women in

Group 3 lived with a fistula before accessing repair as well as their higher average PQoLduring the time of the fistula in comparison to Group 1 women. Future studies should

explore the impact of this and other campaigns on changing attitudes towards women

living with and recovering from an obstetric fistula (Bangser et al. 1999).

An obstetric fistula is a consequence of health inequities shaped by poverty and

often results in severe social, emotional and physical problems for affected women

(Cook et al. 2004, Roush 2009). Persisting gender inequality including women’s lack of

decision-making power over their own health and the prohibitive costs of transporta-

tion in many developing country settings also limit women’s access to skilled deliverycare and fistula repair services when needed. The findings of our study suggest that the

stigma experienced by women living with and recovering from an obstetric fistula can

be reduced through improved awareness of and access to timely repair services. This

finding underscores the need to make treatment services available to women, carry out

community education efforts on obstetric fistulae and provide social and medical

services after discharge to help women reintegrate post-treatment (Bangser 2006, Wall

2006).

Limitations

Language and interpretation issues were limiting factors given that not every

participant was fluent in Swahili, although each participant could communicate

through an interpreter. The presence of a nurse, who also acted as a translator, and

the participation of one researcher who is not Tanzanian may have introduced bias as

well. Although the modified versions of the PQoL and RNLI used for the study have

not been validated in Tanzania or for use with women living with or recovering fromobstetric fistula, they are based on validated tools. Other limitations are the small

sample size of women whose fistula have been repaired and returned home, and the

variability of the experiences they each had. The use of women from Group 1 to

identify those for Group 2 may have resulted in the selection of a non-representative

870 R. Pope et al.

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sample of non-affected community women. This research was exploratory and the

findings need to be validated through larger-scale studies in Tanzania and possibly in

other areas of high fistula prevalence (Table 5).

Conclusion

After a decade of community education efforts, and service delivery in Tanzania,

many women with an obstetric fistula are obtaining treatment. They are re-

integrating into their communities and some are re-marrying and having children.

Time and social support are important in helping women reintegrate after repair.

Resuming work was perceived by the women as critical to re-establishing their place

in society. Because physical labour is difficult during the first year of recovery,

training activities providing women with alternative ways to generate income are

needed. Post-treatment services including counselling on an ‘as need’ basis for at

least the first year post-surgery would also enable women to ask questions about

physical and sexual activity, family planning and how to cope with continued SUI

and other health concerns. Providing a place in or near the hospital for women who

need longer recovery periods (especially if she has no relatives nearby) may reduce

the pressure women face to resume household and work responsibilities that could

hinder the healing process and/or add to their emotional stress.

Our study findings of less ostracism including fewer instances of divorce when

women’s fistulae are repaired soon after developing a fistula suggest that timely care

improves women’s ability to successfully reintegrate into society. Although the aim of

this study was not to examine the impact of public health campaigns in the study

area, our results suggest that the awareness campaign in the Mwanza region in the

late 1990s has reduced the social stigma surrounding obstetric fistulae.

In sum, our findings suggest that effective medical treatment of obstetric fistulae

should include post-surgical and follow-up care and training opportunities for

women to help them best reintegrate into their communities. The ultimate goal is, of

course, to strengthen family planning and maternal health services to prevent fistulae

from occurring. Increasing community awareness of obstetric fistulae and the

importance of skilled delivery care for all women can lead to reductions in social

stigma associated with the condition and potentially change health-seeking

behaviours and community priorities so that more women are able to access skilled

care and receive timely treatment services when necessary.

Table 5. Areas requiring more research.

Validation of a population-specific

reintegration tool

Clinical/physical influences of reintegration,

especially in terms of incontinenceTools to predict reintegration success Perspective of women’s partners and families

about the reintegration process

Reproductive choices and decision making

post-repair

Alternative income generation for the first year

after repair

Facilities or alternative options for longer

recovery time post-repair

Culturally acceptable solutions for residual

incontinence

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Acknowledgements

The authors would like to thank the following individuals for their assistance: Ms HellenWilly, Dr Janet McGrath, Dr Shan Mohammed, Ms Michelle Nebergall, Ms VirginaMorrison, and Dr Scott Frank. We are also grateful for the support of the Eva L. PancoastMemorial Scholarship from Case Western Reserve University. Thank you also to Dr. DonaldPatrick and the Seattle Quality of Life Group, Katherine Daneski et al., and Elizabeth Tracyfor granting us permission to use modified versions of their research tools.

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