Qualitative component
Characteristics of qualitative participants are presented in Table
1. Median age at interview was 30 years while median age at fistula development was 22 years. Time lived with fistula varied, with the majority of women having lived with the condition for at least one year (87%) and 42% having lived with it for more than five years. The majority of participants lived with their husbands (76%).Two-thirds of participants had not completed primary school (63%) and reported being financially dependent upon their husbands (64%). The median number of living children was two; 46% had no living children (not shown).
Table 1
Baseline characteristics of study participants across qualitative and quantitative study phases
Current Age (median, IQR) | 30 (24–37) | 28 (21–36) |
Age at Fistula (median, IQR) | 22.5 (18–28) | 22.5 (18–31) |
Time Lived with Fistula |
< 1 Month | 0 | 0.0 | 8 | 13.3 |
1–3 Months | 0 | 0.0 | 19 | 31.7 |
3–12 Months | 4 | 12.1 | 8 | 13.3 |
1–2 Years | 13 | 39.4 | 3 | 5.0 |
3–5 Years | 2 | 6.1 | 5 | 8.3 |
> 5 Years | 14 | 42.4 | 17 | 28.3 |
Infant Survival, Fistula-Related Delivery | 10 | 30.3 | 17 | 28.3 |
District |
Kampala | 3 | 9.1 | 10 | 16.7 |
Luweero | 4 | 12.1 | 3 | 5.0 |
Mityana | 1 | 3.0 | 5 | 8.3 |
Mubende | 5 | 15.2 | 6 | 10.0 |
Mukono | 2 | 6.1 | 4 | 6.7 |
Wakiso | 8 | 24.2 | 18 | 30.0 |
Othera
| 10 | 30.3 | 14 | 23.3 |
Living Situation |
Aloneb
| 3 | 9.1 | 13 | 31.6 |
Husbandb
| 25 | 75.8 | 24 | 40.0 |
Adult childrenb
| 1 | 3.0 | 4 | 6.7 |
Parentsb
| 0 | 0.0 | 8 | 13.3 |
Otherb
| 4 | 13.2 | 11 | 18.4 |
Living Children (median, IQR) | 2 (1–3) | 1 (0–3) |
Educational Attainment |
None | 2 | 6.1 | 10 | 16.7 |
Some Primary | 19 | 57.6 | 24 | 40.0 |
Completed Primary | 4 | 12.1 | 17 | 28.3 |
Any Secondary | 8 | 24.2 | 9 | 15.0 |
Occupation |
None | 11 | 33.3 | 35 | 58.3 |
Vendor/Shopkeeper | 4 | 12.1 | 5 | 8.3 |
Farmer | 11 | 33.3 | 15 | 25.0 |
Other | 7 | 21.3 | 5 | 8.3 |
Primary Source Financial Support |
Self | 11 | 33.3 | 18 | 30.0 |
Husband | 21 | 63.6 | 21 | 35.0 |
Other | 1 | 3.0 | 21 | 35.0 |
Household Assets |
Piped Water | 5 | 15.2 | 9 | 15.0 |
Flush/pour flush toilet | 2 | 6.1 | 4 | 6.7 |
Electricity | 10 | 30.3 | 26 | 43.3 |
Radio | 29 | 87.9 | 35 | 58.3 |
Television | 13 | 39.4 | 17 | 28.3 |
Mobile phone | 29 | 87.9 | 39 | 65.0 |
Refrigerator | 3 | 9.1 | 26 | 43.3 |
Our qualitative participants described experiences with obstetric fistula characterized by significant suffering, both physically and psychologically. In addition to urinary incontinence, the reported physical sequelae of obstetric fistula included pain, weakness, and infection, all resulting in limited physical mobility. They had substantial self-care needs and were highly dependent on caregivers. Psychologically there was significant evidence of depression, anxiety, and low self-esteem. Stigma was a common experience, generated from varied sources; internalization of stigma frequently led to self-isolation. Disclosure avoidance was a common strategy for evading stigma anticipations. Many participants also highlighted the negative impact that their fistula had on their children, partners, and other family members.
Perceptions of recovery focused largely on achievement of continence, as this was the primary symptom that women associated with the fistula. Participants whose surgery resulted in attainment of urinary continence were exceedingly pleased with the results, and often expressed disbelief that they had healed. One participant exclaimed, “I felt so good. I would wake up at night and touch around to feel if there was any urine [on the mattress] and indeed there wasn’t!” (22-year old interviewee).
Themes that emerged as central to women’s experiences following achievement of continence, their perceptions of recovery from the fistula, and ultimately reintegrating included overcoming limited mobility and social participation, improving self-worth and reduction of internalized stigma, resuming work and reducing economic dependence, achieving the ability to meet other expected and desired roles, and changing their overall outlook to being able to consider their lives more broadly.
Limited mobility and social participation
During the time they were suffering from fistula, the majority of qualitative participants reported frustration with constraints on their mobility, imposed by the logistics of managing their incontinence, physical pain or discomfort, and stigma anticipations. Limitations on mobility manifested most simply as not having the freedom to do what one wanted, as evidenced by the following:
"You can’t have peace at any one time, clothes will be burning your skin. You can’t even go to the shop because as you move, urine can pass out and you become wet so you become scared of even visiting your friends, you always keep at home… I couldn’t go anywhere." (19-year-old focus group participant).
"I could no longer do anything on my own…. I wasn't moving. I couldn't even move out of my bedroom. There were times when I felt like going out of my bedroom and going out to my neighbors and conversing but it was impossible because you would be standing and you would all get wet." (32-year-old interviewee).
Elation at being able to move freely following a successful surgery was commonly reported, described by one interviewee: “I felt so excited and wanted to move all the time! What would hurt me most [living with fistula was] that I couldn’t move…. I can now move freely! [After surgery], I would go to the road side just to feel what I was missing before.” (26-year-old interviewee).
Frustrations with restricted mobility were also inextricably linked to limitations on opportunities and possibilities for social participation. Women largely reported being unable to freely spend time with family members and friends during the time they lived with fistula, and that this inability to participate socially represented a significant cause of stress, as expressed in the following quotations:
"The main reason why I am sad is that before I would interact and converse with fellow women unlike now; I can go to them and only interact with them for a short time and leave because of the leaking." (28-year-old interviewee).
"Before, I could play, I could mix with people. I could visit friends, grandparents, aunties, but [when I had fistula] I couldn't because I was avoiding the condition of sitting in a place and leaving it wet and I wouldn’t want to reveal this condition to everyone." (19-year old interviewee).
Resumption of social engagement was consistently mentioned as being very important to women following successful surgery. Sentiments shared by several participants highlighted the social support that social engagement facilitated and the recovered sense of belonging with others, contrary to the alienation they had experienced during the time they suffered from fistula-related incontinence. These sentiments are expressed in the following quotations:
"Now I have hope because I feel good, I can go anywhere and I also enjoy life because I can be with my friends and even my family which keeps me happy." (19-year old interviewee).
“From the time I was operated on, there is nothing that can stop me from going to interact with people; and remember, if you are to develop, you need to relate with people. So from the fact that I am no longer suffering from fistula, I relate with people because I now go and work - whatever happened, happened, but all in all I can meet my basic needs. (37-year old interviewee).”
"Now you easily sit beside your friend when they have invited you somewhere but back [when you had fistula], you would sit and you yourself you could feel the cloth you used to pamper yourself really smelling. Now you can sit in a line with people and you feel like a human being too."(33-year old focus group participant).
Self-worth and internalized stigma
Perceptions of recovery heavily weighed on individual’s opinions of themselves and their value. As demonstrated by the following quotes, many participants reported extremely low self-esteem during the period that they were experiencing fistula-related symptoms, perceiving themselves as not worthy of being with others and belonging to their communities.
"You can’t have fistula and consider yourself to have value; my heart was depressed. For 30 years, I wasn’t considering myself to be a human being." (50-year old focus group participant).
"[When I had fistula], I wasn’t considering myself as part of the human race. [I thought of myself as] someone who can’t be among people, someone who can’t fit anywhere; you just regard yourself as something without meaning." (23-year old focus group participant).
Conversely, after successful surgery, these perceptions of low-value reversed for many, with women largely reporting feeling that they are useful and needed by their families and communities. This sentiment was reflected by one interviewee: “Now I see myself as a powerful woman with visions and someone who is useful and I see that the community needs me now.” (39-year old interviewee).
Resumption of work and reduced economic dependence
The ability to work played a distinct role in altering women’s perceptions of their self-value through their ability to participate in their previous activities, achieving their previous roles, and through empowering them to meet their own needs and the needs of their dependents. Participants’ narratives frequently compared their ability to work and what this meant to them during the time they lived with significant fistula-related symptoms to the time following surgery:
"[Initially] I had lost interest, but right now I can even cultivate sweet potatoes. I can now cultivate food which is enough for my children so that they don’t live a needy life apart from need for money. Food, I can offer that very well to my children, they can eat and all be happy. Now I am useful to my home." (47-year old focus group participant).
"My roles were regained [after fistula repair]. Initially I could do nothing on my own because of the pain, but now I can do [all of my previous tasks]…. I clean my home and take care of my children like I did initially."(23-year old focus group participant).
Inability to meet other expected roles
Dissatisfaction with being economically dependent on others was not the only cause of tension. Some women described tension stemming from the disconnect between their household caretaking structure due to fistula as the antithesis of normal expectations, both those they held for themselves and those held by their families:
“I would feel sad from the very inside of me because I would imagine that instead of me helping my husband or mother-in-law; he or she was the one helping me.” (20-year-old interviewee).
"I would imagine, my husband was expecting me to bear for him a child but all was in vain because our baby had passed away yet if that baby was alive, we would be loving her so much." (20-year-old interviewee).
Much of this tension was internal; however, some women shared that it affected the quality of their relationships with important people in their lives.
“[After the surgery], there was a very big difference with my family relationships; my mother even started liking me more … because I was not giving her anything [during the time I was suffering from fistula]; instead I was milking her, yet [as my mother], she should have been at the receiving end. So our love revived after.” (22-year-old interviewee).
One woman highlighted the difference in how she is perceived after healing from fistula, describing how she is now able to resuming the role of contributor within her community, “Even me I see a change because people who couldn’t even associate with me can now ask for, say, sauce in case they don’t have and I am having.” (40-year-old focus group participant).
Overall outlook
Finally, during the time that they were suffering from fistula-related symptoms, women described an inability to look forward, to consider their lives in larger perspective, and how this changed following recovery. One woman shared, “Then we were only thinking of how to get a polythene [sheet to protect from urine leakage] or transport to take you to a health facility or even money for surgery …. Now everything that comes up we also think of it, like saving money for new things … we can also think of others; say I have 1,000USh let me give my friend 200USh and we share.” (30-year old focus group participant).
Quantitative component
Exploratory factor analysis of the baseline data was conducted using oblique rotation. Three of our initial items (satisfaction with how self-care needs are met; feeling down, depressed or hopeless; and feeling hope) did not load on any of these four factors at the minimum level we established for factor loadings, thus were excluded from all further analysis of the scale. Our results suggested a four factor structure (Table
2), based on eigenvalue and scree plot review. Based on subscale composition, we labeled the four subscales as ‘Mobility and social engagement’, ‘Meeting family needs’, ‘Comfort with relationships’, and ‘General life satisfaction.’ Raykov’s
ρ for each of the subscales ranged from 0.73–0.97, suggesting satisfactory or better internal consistency for each of the subscales. The correlations between the four subscales are presented in Table
3, and factor loadings of the subscales were moderate to strong, ranging from 0.36–0.60 (Table
2). The goodness-of-fit statistics for the higher-order factor model offer preliminary support for this model. The likelihood ratio test chi-square statistic was 0.46 (
p = 0.7939). The root mean squared error of approximation (RMSEA), comparative fit index (CFI), and standardized root mean squared residual (SRMR) were 0.000 (90% CI 0.000–0.163), 1.000, and 0.022, respectively.
Table 2
Constituent items of the post-fistula repair reintegration instrument and lower and higher-order rotated factor loadings
Mobility and social engagement
ρ = 0.86
| I am comfortable moving around my community. | 0.8858 |
I am comfortable moving around my house. | 0.7039 |
I freely engage in work that is necessary or important to me.
| 0.7033 |
I am able to make longer trips. | 0.5427 |
I am satisfied with the role that I hold in my community. | 0.5875 |
I am able to participate in social and religious activities as I want. | 0.5153 |
I am satisfied with my capacity for work. | 0.4432 |
I am satisfied with my capacity to meet my needs and the needs of any dependents. | 0.3997 |
I am comfortable with myself in the company of others. | 0.3460 |
Meeting family needs
ρ = 0.97
| I have a role in my family which meets my needs. | 0.9443 |
I have a role in my family which meets the needs of my family members. | 0.8835 |
Comfort with relationships
ρ = 0.73
| In general, I am comfortable with my personal relationships. | 0.8012 |
In general, I am comfortable with my relationship with my husband/partner. | 0.6647 |
In general, I am comfortable with my relationship with friends/other family members. | 0.5071 |
In general, I am comfortable with my relationship with my children. | 0.4152 |
General life satisfaction
ρ = 0.95
| In general, I am satisfied with myself. | 0.9630 |
In general, I am satisfied with my life. | 0.9129 |
In general, I am satisfied with my health. | 0.7597 |
Higher-order factor | Lower-order factor | Rotated factor loading |
Reintegration | Mobility and social engagement | 0.6011 |
Meeting family needs | 0.5607 |
Comfort with relationships | 0.3550 |
General life satisfaction | 0.4139 |
Table 3
Correlations between lower-order factors comprising the post-fistula repair reintegration instrument
Mobility and social engagement | 1.0000 | | | |
Meeting family needs | 0.4111 | 1.0000 | | |
Comfort with relationships | 0.2308 | 0.2436 | 1.0000 | |
General life satisfaction | 0.3163 | 0.2341 | 0.9765 | 1.0000 |
The distribution of our standardized reintegration scale at baseline had mean 33.2 (SD 20.4) and median 29.0 (IQR 19.5–40.0). Construct validity was assessed by comparing participants’ scores on the standardized reintegration scale with certain concurrent characteristics and to their responses to other validated measures theoretically related to reintegration (Table
4). Across duration of living with fistula, the pattern of reintegration score was not significantly different for most categories compared to women living with fistula for <3 months; however, women who had lived with fistula the longest (5+ years) had significantly higher reintegration score. Reintegration score was patterned but did not significantly vary by severity of urinary incontinence, severity of fecal incontinence, a one-item measure of general health, and presence of or number of additional physical symptoms. Participant level of reintegration did correlate significantly with validated measures of quality of life (QOL), depression, self-esteem, experiences of stigma, and social support in the expected directions. Across QOL subscales, reintegration at baseline correlated significantly with the physical, psychological, and social subscales while the relationships between reintegration and the overall QOL subscale and the environmental QOL subscale suggested a similar trend but did not reach statistical significance. The mean increase in reintegration score associated with each one-point increase in QOL was 0.36 (95% CI 0.15, 0.56) for the physical subscale, 0.49 (95% CI 0.16, 0.82) for the psychological subscale, and 0.46 (0.25, 0.67) for the social subscale. The magnitude of association between depression symptoms and reintegration score was higher; for each one-point increase in depression symptoms, reintegration score significantly decreased by a mean of 16.06 points (95% CI -22.80, −9.32). Self-esteem was positively associated with reintegration score; each one-point increase in self-esteem was associated with a 1.67 increase in reintegration score (95% CI 0.58, 2.75). All stigma subscales were significantly and negatively associated with reintegration score; each one-point increase in stigma was associated with a decrease in reintegration score of 0.27 (95% CI -0.46, −0.08) for verbal abuse, 0.27 (95% CI -0.40, −0.14) for negative self-perception, 0.34 (−0.52, −0.17) for social isolation, and 0.36 (95% CI -0.63, −0.08) for fear of contagion. Social support was largely significantly and positively associated with reintegration score; each one-point increase in social support was associated with a mean increase in reintegration score of 0.92 (95% CI 0.44, 1.40) overall, 2.19 (95% CI 0.94, 3.45) for partner social support, and 1.33 (95% CI 0.33, 2.33) for family social support. The relationship between friend social support and reintegration score suggested a positive trend but did not meet our defined threshold for statistical significance.
Table 4
Assessment of criterion validity for the post-fistula repair reintegration instrument
Duration of Fistula | | | | | 0.11 |
< 3 Months | REF | - | - | - | |
3–12 Months | −2.82 | −18.83 | 13.28 | 0.725 | |
1–2 Years | −5.07 | 34.29 | 24.15 | 0.729 | |
3–5 Years | 11.13 | −8.25 | 30.51 | 0.255 | |
≥ 5 Years | 13.28 | 1.01 | 25.56 | 0.034 | |
Severity of Urinary Incontinence | −0.83 | −2.4 | 0.74 | 0.294 | 0.02 |
Severity of Fecal Incontinence | −0.92 | −2.86 | 1.02 | 0.346 | 0.02 |
General Health | −1.52 | −15.24 | 12.21 | 0.826 | 0.00 |
Physical Symptoms |
Number of Symptoms | −2.31 | −5.17 | 0.55 | 0.112 | 0.04 |
Any Symptoms versus None | −8.31 | −21.87 | 5.25 | 0.225 | 0.03 |
Quality of Life |
Overall | 0.42 | −0.07 | 0.91 | 0.094 | 0.05 |
Physical | 0.36 | 0.15 | 0.56 | 0.001 | 0.18 |
Psychological | 0.49 | 0.16 | 0.82 | 0.004 | 0.14 |
Social | 0.46 | 0.25 | 0.67 | <0.001 | 0.25 |
Environmental | 0.27 | −0.08 | 0.62 | 0.124 | 0.04 |
Depressive Symptoms | −16.06 | −22.80 | −9.32 | <0.001 | 0.28 |
Self-Esteem | 1.67 | 0.58 | 2.75 | 0.003 | 0.14 |
Stigma |
Verbal Abuse | −0.27 | −0.46 | −0.08 | 0.007 | 0.12 |
Negative Self Perception | −0.27 | −0.40 | −0.14 | <0.001 | 0.23 |
Social Isolation | −0.34 | −0.52 | −0.17 | <0.001 | 0.21 |
Fear of Contagion | −0.36 | −0.63 | −0.08 | 0.012 | 0.10 |
Social Support |
All | 0.92 | 0.44 | 1.40 | <0.001 | 0.20 |
Partner | 2.19 | 0.94 | 3.45 | 0.001 | 0.17 |
Family | 1.33 | 0.33 | 2.33 | 0.01 | 0.11 |
Friend | 0.97 | −0.23 | 2.17 | 0.11 | 0.04 |
Any Trauma | 1.39 | −4.08 | 6.86 | 0.614 | 0.00 |
The full scale evidenced high internal consistency reliability with Raykov’s ρ of 0.88. Temporal stability reliability was measured among the subset of participants available at two-weeks post-surgery (n = 38), comparing our baseline sample to data collected at two-weeks post-surgery prior to catheter removal and hospital discharge. Correlation of reintegration score between the two time points was high (r = 0.97) and statistically significant (p < 0.001).