Identifying opportunities for prevention of adverse outcomes following female genital fistula repair: protocol for a mixed-methods study in Uganda.

BACKGROUND: Female genital fistula is a traumatic debilitating injury, frequently caused by prolonged obstructed labor, affecting between 500,000-2 million women in lower-resource settings. Vesicovaginal fistula causes urinary incontinence, and other morbidity may occur during fistula development. Women with fistula are stigmatized, limit social and economic engagement, and experience psychiatric morbidity. Improved surgical access has reduced fistula consequences yet post-repair risks impacting quality of life and well-being include fistula repair breakdown or recurrence and ongoing or changing urine leakage or incontinence. Limited evidence on risk factors contributing to adverse outcomes hinders interventions to mitigate adverse events. This study aims to quantify these adverse risks and inform clinical and counseling interventions to optimize women's health and quality of life following fistula repair through: identifying predictors and characteristics of post-repair fistula breakdown and recurrence (Objective 1) and post-repair incontinence (Objective 2), and to identify feasible and acceptable intervention strategies (Objective 3). METHODS: This mixed-methods study incorporates a prospective cohort of women with successful vesicovaginal fistula repair at approximately 12 fistula repair centers in Uganda (Objectives 1-2) followed by qualitative inquiry among key stakeholders (Objective 3). Cohort participants will have a baseline visit at the time of surgery followed by data collection at 2 weeks, 6 weeks, 3 months and quarterly thereafter for 3 years. Primary predictors to be evaluated include patient-related factors, fistula-related factors, fistula repair-related factors, and post-repair behaviors and exposures, collected via structured questionnaire at all data collection points. Clinical exams will be conducted at baseline, 2 weeks post-surgery, and for outcome confirmation at symptom development. Primary outcomes are fistula repair breakdown or fistula recurrence and post-repair incontinence. In-depth interviews will be conducted with cohort participants (n ~ 40) and other key stakeholders (~ 40 including family, peers, community members and clinical/social service providers) to inform feasibility and acceptability of recommendations. DISCUSSION: Participant recruitment is underway. This study is expected to identify key predictors that can directly improve fistula repair and post-repair programs and women's outcomes, optimizing health and quality of life. Furthermore, our study will create a comprehensive longitudinal dataset capable of supporting broad inquiry into post-fistula repair health. Trial Registration ClinicalTrials.gov Identifier: NCT05437939.

Female genital fistula is a traumatic birth injury which occurs where access to emergency childbirth care is poor. It causes uncontrollable urine leakage and is associated with other physical and psychological symptoms. Due to the urine leakage and its odor, women with fistula are stigmatized which has mental health and economic consequences. Ensuring women's access to fistula surgery and ongoing wellbeing is important for limiting the impact of fistula. After fistula surgery, health risks such as fistula repair breakdown or recurrence or changes to urine leakage can happen, but studies during this time are limited. Our study seeks to measure these health risks and factors influencing these risks quantitatively, and work with patients, community members, and fistula care providers to come up with solutions. We will recruit up to 1000 participants into our study at the time of fistula surgery and follow them for three years. We will collect data on patient sociodemographic characteristics, clinical history, and behavior after fistula repair through patient survey and medical record review. If participants have changes in urine leakage, they will be asked to return to the fistula repair hospital for exam. We will interview about 80 individuals to obtain their ideas for feasible and acceptable intervention options. We expect that this study will help to understand risk factors for poor health following fistula repair and, eventually, improve women's health and quality of life after fistula.

A Study of Sexual Relationship Power among Young Women Who Inject Drugs and Their Sexual Partners.

BACKGROUND: To date, research applying the Sexual Relationship Power Scale (SRPS) has been limited to sexual risk behaviors. OBJECTIVE: We measured levels of sexual relationship power and examined associations between sexual relationship power and injecting and sexual behaviors that place women at increased risk for blood borne infections. METHODS: Using data from a cross-sectional study of young women who inject drugs (WWID) in San Francisco, USA, logistic regression analysis identified independent associations between SRPS and subscale scores (relationship control [RC] and decision making dominance [DMD]) and injecting and sexual behaviors. RESULTS: Of the 68 young WWID, 24 (34%) reported receptive syringe sharing, 38 (56%) reused/shared a cooker to prepare drugs, and 25 (37%) injected someone else's drug residue during the three-months prior to enrollment. Most (60, 88%) reported condomless sex with main sex-partner, 8 (12%) reported transactional sex, and 36 (53%) had two or more recent sex partners. The median SRPS score was 2.98 (IQR: 2.65, 3.18), 3.23 (IQR: 3.23, 3.57) for RC and 2.40 (IQR: 2.20, 2.60) for DMD. No significant associations were detected between SRPS or DMD and injecting or sexual risk behaviors. After adjusting for gender and years injecting, for every one-point increase in RC, women had a 6.70 lower odds of recent condomless sex (95%CI: 0.92, 50.00, p = 0.06), and a 3.90 lower odds of recent transactional sex (95%CI: 1.22, 12.50, p = 0.02). CONCLUSION: Our study findings suggest that some components of sexual relationship power may play a role in sexual risk, but not in injecting risk.

Social-cultural factors in end-of-life care in Belgium: a scoping of the research literature.

BACKGROUND: As end-of-life (EoL) care expands across Europe and the world, service developments are increasingly studied. The sociocultural context in which such changes take place, however, is often neglected in research. AIM: To explore sociocultural factors in EoL care in Belgium as represented by the literature. DESIGN: A scoping of the empirical research literature following a systematic search procedure with a focus on thematic analysis based on the literature findings. DATA SOURCES: Searches were carried out in eight electronic databases, five journals, reference lists, and grey literature (through September 2010). Articles informing about sociocultural issues in EoL care were included. RESULTS: One hundred and fifteen original studies met the inclusion criteria, the majority (107) published between 2000 and 2010. Four major themes were: Setting; Caregivers; Communication; and Medical EoL Decisions (the largest category). Minority Ethnic Groups was an emerging theme. Gaps included: research in Wallonia and Brussels; the role and experiences of informal caregivers; issues of access to palliative care; and experiences of minority ethnic groups. There was a paucity of in-depth qualitative studies. CONCLUSIONS: Various sociocultural factors influence the provision of EoL care in Belgium. This country provides a unique opportunity to witness how euthanasia is put into practice when legalized, in a context where palliative care is also highly developed and where many health care institutions have Catholic affiliation, providing an important example to others. Attention to how the sociocultural context affects EoL care adds to the current evidence base of service provision, which is essential in the further development of EoL care.

Identifying Opportunities for Prevention of Adverse Outcomes Following Female Genital Fistula Repair: Protocol for a Mixed-Methods Study in Uganda.

Background: Female genital fistula is a traumatic debilitating injury, frequently caused by prolonged obstructed labor, affecting between 500,000-2 million women in lower-resource settings. Vesicovaginal fistula causes urinary incontinence. Other gynecologic, neurologic and orthopedic morbidity may occur during fistula development. Women with fistula are stigmatized; limit engagement in social, economic, or religious activities; and report high psychiatric morbidity. Improved global surgical access has reduced fistula consequences yet post-repair risks impacting quality of life and well-being include fistula repair breakdown or recurrence and ongoing or changing urine leakage or incontinence. Limited evidence on risk factors contributing to adverse outcomes hinders interventions to mitigate adverse events, protecting health and quality of life after surgery. This study seeks to identify predictors and characteristics of post-repair fistula breakdown and recurrence (Aim 1) and post-repair incontinence (Aim 2), and to identify feasible and acceptable intervention strategies (Aim 3). Methods: This mixed-methods study incorporates a prospective cohort study of women with successful vesicovaginal fistula repair at approximately 12 fistula repair centers and affiliated care sites in Uganda (Aims 1-2) followed by qualitative inquiry among key stakeholders (Aim 3). Cohort participants will have a baseline visit at the time of surgery followed by data collection at 2 weeks, 6 weeks, 3 months and quarterly thereafter for 3 years. Primary predictors to be evaluated include patient-related factors, fistula-related factors, fistula repair-related factors, and post-repair behaviors and exposures, collected via structured questionnaire at all data collection points. Clinical exams will be conducted at baseline, 2 weeks post-surgery, and for outcome confirmation at symptom development. Primary outcomes are fistula repair breakdown or fistula recurrence and post-repair incontinence. In-depth interviews will be conducted with cohort participants (n ~ 40) and other key stakeholders (~ 40 including family, peers, community members and clinical/social service providers) to develop feasible and acceptable intervention concepts for adjustment of identified risk factors. Discussion: Participant recruitment is underway. This study is expected to identify key predictors that can directly improve fistula repair and post-repair programs and women's outcomes, optimizing health and quality of life. Furthermore, our study will create a comprehensive longitudinal dataset capable of supporting broad inquiry into post-fistula repair health. Trial Registration: ClinicalTrials.gov Identifier: NCT05437939.

Body/Selves and Beyond: Men's Narratives of Sexual Behavior on PrEP.

Although pre-exposure prophylaxis (PrEP) has dramatically impacted HIV prevention, deep engagement with PrEP-takers' own accounts of their sexual behavior is still rare. We report findings from semi-structured interviews with male participants of the US PrEP Demonstration Project. In their narratives, interviewees variously foregrounded their individual selves, interactions with sexual partners, and the biopolitical and historical context of their lives. PrEP served to discursively integrate the multiple selves populating these stories. We argue that medical anthropological notions can help make sense of men's accounts, and PrEP's role in them, advancing a holistic conception of personhood that includes but transcends concern with HIV.

Knowledge, attitudes, and practices concerning malaria in pregnancy: results from a qualitative study in Madang, Papua New Guinea.

BACKGROUND: Malaria is the leading cause of illness and death in Papua New Guinea (PNG). Infection during pregnancy with falciparum or vivax malaria, as occurs in PNG, has health implications for mother and child, causing complications such as maternal anemia, low birth weight and miscarriage. This article explores knowledge, attitudes and practices concerning malaria during pregnancy and it's prevention in Madang, PNG, a high prevalence area. METHODS: As part of a qualitative study in Madang, exploring MiP, participatory techniques (free-listing and sorting) were conducted along with focus group discussions, in-depth interviews (with pregnant women, health staff and other community members) and observations in the local community and health facilities. RESULTS: The main themes explored were attitudes towards and knowledge of MiP, its risks, and prevention. Although there was a general awareness of the term "malaria", it was often conflated with general sickness or with pregnancy-related symptoms. Moreover, many preventive methods for MiP were related to practices of general healthy living. Indeed, varied messages from health staff about the risks of MiP were observed. In addition to ideas about the seriousness and risk of MiP, other factors influenced the uptake of interventions: availability and perceived comfort of sleeping under insecticide-treated mosquito nets were important determinants of usage, and women's heavy workload influenced Chloroquine adherence. CONCLUSION: The non-specific symptoms of MiP and its resultant conflation with symptoms of pregnancy that are perceived as normal have implications for MiP prevention and control. However, in Madang, PNG, this was compounded by the inadequacy of health staff's message about MiP.

Factors affecting attendance at and timing of formal antenatal care: results from a qualitative study in Madang, Papua New Guinea.

BACKGROUND: Appropriate antenatal care (ANC) is key for the health of mother and child. However, in Papua New Guinea (PNG), only a third of women receive any ANC during pregnancy. Drawing on qualitative research, this paper explores the influences on ANC attendance and timing of first visit in the Madang region of Papua New Guinea. METHODS: Data were collected in three sites utilizing several qualitative methods: free-listing and sorting of terms and definitions, focus group discussions, in-depth interviews, observation in health care facilities and case studies of pregnant women. Respondents included pregnant women, their relatives, biomedical and traditional health providers, opinion leaders and community members. RESULTS: Although generally reported to be important, respondents' understanding of the procedures involved in ANC was limited. Factors influencing attendance fell into three main categories: accessibility, attitudes to ANC, and interpersonal issues. Although women saw accessibility (distance and cost) as a barrier, those who lived close to health facilities and could easily afford ANC also demonstrated poor attendance. Attitudes were shaped by previous experiences of ANC, such as waiting times, quality of care, and perceptions of preventative care and medical interventions during pregnancy. Interpersonal factors included relationships with healthcare providers, pregnancy disclosure, and family conflict. A desire to avoid repeat clinic visits, ideas about the strength of the fetus and parity were particularly relevant to the timing of first ANC visit. CONCLUSIONS: This long-term in-depth study (the first of its kind in Madang, PNG) shows how socio-cultural and economic factors influence ANC attendance. These factors must be addressed to encourage timely ANC visits: interventions could focus on ANC delivery in health facilities, for example, by addressing healthcare staff's attitudes towards pregnant women.

Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom.

CONTEXT: Patients from minority ethnic groups experience lower rates of referrals to end-of-life (EoL) care services, higher levels of dissatisfaction with services, and perceive some services as culturally inappropriate. OBJECTIVES: To systematically review original studies of minority ethnic groups and EoL care in the U.K. and appraise their quality. METHODS: Searches were carried out in 13 electronic databases, eight journals, reference lists, and the gray literature. Studies of minority ethnic groups and EoL care in the U.K. were included. Studies were graded for quality and key themes were identified. RESULTS: Forty-five studies met inclusion criteria. Study quality was good on average. Identified key themes included age structure; inequality by disease group; referrals; caregivers; place of care and death; awareness of services and communication; and cultural competency. Strategies described for the reduction of inequities were partial and reactive. The format of 10 studies prevented quality grading; these were, however, reviewed as they provided unique insights. Variations in terminology and sampling frames complicated comparison across studies. CONCLUSION: The results highlight the multiple and related factors that contribute to low service use and substandard quality of services experienced by minority ethnic groups, and the need for authors to clarify what they mean by "culturally competent" EoL care. The synthesis of diverse and disparate studies underpins a number of key recommendations for health care professionals and policymakers. Tackling these epidemiological, demographic, institutional, social, and cultural factors will require a systematic and organization-wide approach rather than the current piecemeal and reactive interventions.

A critical review of advance directives in Germany: attitudes, use and healthcare professionals' compliance.

OBJECTIVE: Recent legal changes in Germany make non-compliance with advance directives (ADs) a criminal offence. This article assesses the evidence on attitudes towards, use of, and physician compliance with ADs in Germany. METHODS: Critical review: studies on ADs, identified from a systematic review of culture and end-of-life care in Germany (11 electronic databases, 3 journals, reference lists, and grey literature), were included. An interpretative synthesis of findings revealed cross-cutting themes. RESULTS: Thirty-two studies (1996-2009) were identified. Key themes were: awareness; utilization; compliance; and bindingness of ADs. There was a positive trend between awareness of ADs and study publication date. Use varied between patient groups (0.3-62%) and was low amongst the general population (2.5-10%). Fears about ADs' purpose and possible abuse were identified. Physician discomfort in discussing ADs and non-compliance were reported. Physicians preferred legally binding ADs, though conflicting results were reported for patients' desired level of bindingness. CONCLUSION: Although there is increasing awareness of ADs in Germany, there remains low use, poor communication, fears of abuse, some non-compliance and contradictory evidence regarding desired bindingness. PRACTICAL IMPLICATIONS: Although legal changes will hopefully improve compliance, low awareness, communication difficulties and uncertainties surrounding ADs must be addressed if use is to increase.

End-of-life care across Southern Europe: a critical review of cultural similarities and differences between Italy, Spain and Portugal.

Evidence from a range of sources demonstrates that end-of-life (EoL) care practices and preferences vary across countries; culture is consistently one of the main explanations given for this. In order to understand how cultural factors are used to explain similarities and differences in EoL care between Spain, Italy and Portugal, database and hand searches were performed and cross-cutting core themes identified. Similarities included higher proportions of people who wished to die at home than actually died at home, a persistent trend for partial disclosure in Italy and Spain, low use of advance directives, and low incidence of all medical EoL decisions (with the exception of terminal sedation) compared to northern European countries. The role of religion and the importance of family ties were the two main cultural factors used to explain the similarities. Further research is needed in order to interpret the important differences that were also found.

Culture is a priority for research in end-of-life care in Europe: a research agenda.

CONTEXT: Culture has a profound influence on our understanding of what is appropriate care for patients at the end of life (EoL), but the evidence base is largely nonexistent. OBJECTIVES: An international workshop was organized to compile a research agenda for cultural issues in EoL research, and assess challenges and implications of the integration of the culture concept in different contexts. METHODS: Participant experts were identified from the expert network established through an Internet-based call for expertise on culture and EoL care and from meetings. The workshop comprised presentations of research priorities from country and disciplinary perspectives, and group discussions. Analysis used all data gathered in the workshop and applied standard qualitative techniques. RESULTS: Thirty experts participated in the workshop and identified the following priorities for cross-cultural research: 1) clarifying the concepts of culture and cultural competence; 2) defining EoL in a context of social and cultural diversity, with a focus on concepts of EoL care and bioethics, experiences of receiving and giving EoL care, and care practices in different settings; and 3) developing appropriate methodologies and outcome measurements that address diversity. CONCLUSION: This first pan-European meeting compiled a research agenda, identifying key areas for future research focusing on culture, diversity, and their operationalization. This requires international and multidisciplinary collaboration, which is necessary in the current efforts to synthesize best practices in EoL care.

Social and cultural factors affecting uptake of interventions for malaria in pregnancy in Africa: a systematic review of the qualitative research.

BACKGROUND: Malaria during pregnancy (MiP) results in adverse birth outcomes and poor maternal health. MiP-related morbidity and mortality is most pronounced in sub-Saharan Africa, where recommended MiP interventions include intermittent preventive treatment, insecticide-treated bednets and appropriate case management. Besides their clinical efficacy, the effectiveness of these interventions depends on the attitudes and behaviours of pregnant women and the wider community, which are shaped by social and cultural factors. Although these factors have been studied largely using quantitative methods, qualitative research also offers important insights. This article provides a comprehensive overview of qualitative research on social and cultural factors relevant to uptake of MiP interventions in sub-Saharan Africa. METHODS AND FINDINGS: A systematic search strategy was employed: literature searches were undertaken in several databases (OVID SP, IS Web of Knowledge, MiP Consortium library). MiP-related original research, on social/cultural factors relevant to MiP interventions, in Africa, with findings derived from qualitative methods was included. Non-English language articles were excluded. A meta-ethnographic approach was taken to analysing and synthesizing findings. Thirty-seven studies were identified. Fourteen concentrated on MiP. Others focused on malaria treatment and prevention, antenatal care (ANC), anaemia during pregnancy or reproductive loss. Themes identified included concepts of malaria and risk in pregnancy, attitudes towards interventions, structural factors affecting delivery and uptake, and perceptions of ANC. CONCLUSIONS: Although malaria risk is associated with pregnancy, women's vulnerability is often considered less disease-specific and MiP interpreted in locally defined categories. Furthermore, local discourses and health workers' ideas and comments influence concerns about MiP interventions. Understandings of ANC, health worker-client interactions, household decision-making, gender relations, cost and distance to health facilities affect pregnant women's access to MiP interventions and lack of healthcare infrastructure limits provision of interventions. Further qualitative research is however required: many studies were principally descriptive and an in-depth comparative approach is recommended.