Hypothesis / aims of study
This original study aimed to assess the experiences and quality of life of obstetric fistula survivors before and after surgical repair of the fistula and to explore their health seeking behaviors. Obstetric fistula is an abnormal or surgically made connection between the urinary tract and the genital tract or the gastrointestinal tract and the genital tract, as a result of obstetric causes, usually prolonged and obstructed labor. In the country, repair of obstetric fistula was established as a public health intervention in 2015.
Study design, materials and methods
A longitudinal, before and after, cohort study was conducted using both qualitative and quantitative methods. The short version of the World Health Organization Quality of Life assessment tool (WHOQOL-BREF) was used to assess quality of life before and after surgical treatment of obstetric fistula. The tool assesses general health, experience of life in general, physical, psychological, social and environmental health. For the purposes of this study, a mean score of 40 or less, in each domain denotes poor, 41–60 indicates moderate and >60 indicates good quality of life (1). Also, an in-depth interview guide was used to solicit for information on day-to-day living experiences of participants. Quantitative data were analyzed using SPSS version 16.0 for descriptive measures and significance. Qualitative data were analyzed using NVIVO 10 (QSR International, 2013) software for qualitative data. The process of data analysis for qualitative data was guided by constructs from the Ecological Framework.
Results
A total of 29 women came for obstetric fistula repair in November and December 2019 and 26 were purposively recruited into the study. The median age of study participants was 34 years (Q1: 27, Q3:39). The median age at sexual debut was 18 years (Q1:17, Q3: 20) and by age 24, seventy-five percent (19 of the 26) of study participants had had their first pregnancy. Seventeen of the women (65%) had not had any surgeries to repair the obstetric fistula. All 26 participants had transvaginal fistula repair and 24 had successful repair i.e. fistulas closed and continent.
Almost all (22 of the 26) participants got into labor at home and labored for at least two days at home. Fourteen participants developed fistula in less than 5 years prior to this study.
Reasons for staying with fistula included belief that it was their fate from supreme powers, lack of knowledge of availability of repair services, powerlessness regarding decision-making and lack of resources.
Physical consequences: The continuous wetness due to leakage of urine led to excoriations of the genitals and thighs in all participants.
Psychological and emotional consequences: All study participants narrated psychological and emotional misery while living with fistula. Most women recited long periods stretching up to years of mental torture (longest was 49 years). These feelings came from the intrapersonal, interpersonal and community interactions constructs of the Ecological Framework, in the face of fistula problem. Twenty of the twenty-six women reported thinking that death was an easier option at some stage in their lives due to psychological trauma from the problem. Some of the women recovered fast from the psychological trauma and looked up to supreme powers (God) to do His will with their lives. The strong belief in God helped them to accept the problem, minimize worry and looked for ways to cope with their problem. However, other women reported being blamed for developing obstetric fistula by the church. Overally, psychological consequences of living with a fistula problem on the lives of the study participants are illustrated in figure 1.
Social consequences: Half of the study participants reported that their relationships with their husbands/spouses were negatively affected with half of them being divorced or sent back to their parents.
After surgical treatment of the fistula, two participants who were healed expressed that they were now educating other women of their church about the availability of repair services. Social relationships had improved for 19 participants. Three had started sexual relationships and were looking forward to trying for babies while the majority were still contemplating engaging in sex. Fear of recurrence of the fistula was cited as the main reason.
Economic consequences: On the economic front, women who were previously engaged in public activities (outside their homes) reported much disruption in productivity due to the occurrence of the fistula problem. But those whose economic activities were home-based and those working in wet environments reported being able to continue their activities with minimal disruptions.
Six months after treatment of the fistula problem, the economic aspect of life was not changed much. Only two participants were gainfully engaged. The rest were still struggling to either establish self-help projects or looking for a job.
Quality of life of obstetric fistula survivors before and after treatment: Table 1 shows an improvement in quality of life of participants for every domain, using the WHOQOL-BREF. There were significant differences in quality of life across all 26 participants (t-14, df = 25: p <0,001).
Interpretation of results
The finding that the majority of study participants became pregnant within a year after their first sexual contact and a quarter of them getting pregnant by age 19 while three quarters had their first pregnancy by age 24, is a pointer to why these women developed fistula i.e. early age at pregnancy. It has been identified from literature that early age at first pregnancy increased the risk of developing fistula. It may also be debated that access to contraception for these young women is limited (2).
Unlike developed countries where fistula has been eradicated (3) this study noted that more than half of the participants (15 out of 26) developed obstetric fistula less than 5 years prior to this study, with more than a third (9 women) having developed obstetric fistula in the previous 12 months. This finding may be of concern to policy makers in health in the country because it is an indication of poor quality of care or lack of access to timely, appropriate and adequate obstetric care. The high rating of quality of physical health after successful treatment points to the fact that indeed women living with obstetric fistula encounter challenges in their physical health. The cessation of urine incontinence and the healing of perineal sores may have resulted in good hygiene leading to improvement in capacity to do work, social standing and self confidence.