Victimisation in the life of persons with severe mental illness in Uganda: a pluralistic qualitative study.

INTRODUCTION: Victimisation of persons with severe mental illness is recognised as an urgent global concern, with literature pointing to higher rates of violent victimisation of persons with severe mental illness than those of the general population. Yet, for low income countries, there is a huge gap in the literature on the risk, character and victims' in-depth experiences of victimisation of persons with severe mental illness. We explore the lived experiences and meanings of victimisation of persons with severe mental illness in Uganda, and discuss their implications for care of the mentally ill. METHODS: A pluralistic qualitative study was undertaken to explore victimisation among patients with severe mental illness. Patients who had suffered victimisation were purposively sampled from Butabika National Referral Mental Clinic and Masaka Regional Referral Hospital, following confirmation of symptom remission. In-depth interviews were held with 18 participants, comprising 13 females and 5 males from low to moderate socioeconomic status. Interpretative phenomenological analysis and thematic content analysis were conducted. RESULTS: Victimisation was exhibited in three main forms: (a) psychological, expressed in attitudes towards mentally ill family members as valueless and dispensable, and stigmatisation, (b) physical, as manifested in beatings, indoor confinement and tethering mostly by family members and (c) sexual victimisation, particularly rape. Also observed were victim's various responses that pointed to the negative impact of victimisation, including a heightened risk of suicide, social withdrawal, a sense of hatefulness and a predisposition to more victimisation. CONCLUSION: The family environment plays a predominant role in perpetrating victimisation of the mentally ill in some sub-Saharan African contexts such as Uganda. We propose a holistic framework for mental health interventions, incorporating biomedical but notably also social determinants of mental health, and targeted at improving familial relationships, social support and a sense of belongingness both within the family and the broader community.

Conducting in-depth interviews with and without voice recorders: a comparative analysis.

The use of audio recordings has become a taken-for-granted approach to generating transcripts of in-depth interviewing and group discussions. In this paper we begin by describing circumstances where the use of a recorder is not, or may not be, possible, before sharing our comparative analysis of audio-recorded transcriptions and interview scripts made from notes taken during the interview (by experienced, well-trained interviewers). Our comparison shows that the data quality between audio-recorded transcripts and interview scripts written directly after the interview were comparable in the detail captured. The structures of the transcript and script were usually different because in the interview scripts, topics and ideas were grouped, rather than being in the more scattered order of the conversation in the transcripts. We suggest that in some circumstances not recording is the best approach, not 'second best'.

Self-Collection of Vaginal Swabs Among Adolescent Girls in a School-Setting in East Africa.

BACKGROUND: Few studies have evaluated the acceptability of self-collected vaginal swabs among young women in sub-Saharan Africa, including in school settings. We evaluated the acceptability of 2 conditions for the self-collection of swabs in secondary schools in Entebbe, Uganda. METHODS: Assenting girls with parental consent from 3 secondary schools were provided instructions for sampling, and randomly allocated to self-collection of vaginal swabs with or without nurse assistance to help with correct placement of the swab. Swabs were tested for bacterial vaginosis by Gram stain. Participants were followed up after 1 to 2 days and 1 to 2 weeks and invited for a qualitative interview. RESULTS: Overall 96 girls were enrolled (median age, 16 years; interquartile range, 15-17 years). At the first follow-up visit, participants in both arms reported that instructions for sample collection were easy to understand, and they felt comfortable with self-collection. Girls in the nurse assistance arm reported feeling less relaxed (27% vs. 50%, P = 0.02) than those in the arm without nurse assistance, but more confident that they collected the sample correctly (96% vs. 83%, P = 0.04). About half (47%) of participants agreed that self-sampling was painful, but almost all (94%) would participate in a similar study again. Qualitative data showed that participants preferred self-collection without nurse assistance to preserve privacy. Bacterial vaginosis prevalence was 14% (95% confidence interval, 8-22). CONCLUSIONS: In this setting, self-collection of vaginal swabs in secondary schools was acceptable and feasible, and girls preferred self-collection without nurse assistance. Self-collection of swabs is an important tool for the detection, treatment and control of reproductive tract infections in girls and young women.

Menstrual health and school absenteeism among adolescent girls in Uganda (MENISCUS): a feasibility study.

BACKGROUND: Management of menstruation can present substantial challenges to girls in low-income settings. In preparation for a menstrual hygiene intervention to reduce school absenteeism in Uganda, this study aimed to investigate menstruation management practices, barriers and facilitators, and the influence of menstruation on school absenteeism among secondary school students in a peri-urban district of Uganda. METHODS: Qualitative and quantitative studies were conducted among consenting girls and boys aged 14-17 years in four secondary schools in Entebbe sub-District, Uganda. Methods included group and in-depth interviews with students, a quantitative cross-sectional questionnaire, a prospectively self-completed menstrual diary, key informant interviews with policy makers, and observations of school water, sanitation and hygiene facilities. Multiple logistic regression was used to assess factors associated with school absenteeism during the most recent menstrual period. RESULTS: Girls reported substantial embarrassment and fear of teasing related to menstruation in the qualitative interviews, and said that this, together with menstrual pain and lack of effective materials for menstrual hygiene management, led to school absenteeism. All policy makers interviewed reported poverty and menstruation as the key factors associated with school attendance. The 352 girls with questionnaire data had a median age of 16 (inter-quartile range (IQR) = 15,16) years, with median age at menarche of 13 (IQR = 13,14) years. Of these, 64 girls (18.7%) reported having stained their clothes and 69 (19.7%) reported missing at least 1 day of school, during their most recent period. Missing school during the most recent period was associated with physical symptoms (headache (odds ratio (OR) = 2.15, 95%CI:1.20, 3.86), stomach pain (OR = 1.89, 95%CI:0.89, 4.04), back pain (OR = 1.75, 95%CI:0.97, 3.14), and with changing protection 4 or more times per 24 h period (OR = 2.08, 95%CI:1.06, 4.10). In the diary sub-study among 40 girls, school absence was reported on 28% of period-days, compared with 7% of non-period days (adjusted odds ratio = 5.99, 95%CI:4.4, 8.2; p < 0.001). CONCLUSION: In this peri-urban Ugandan population, menstruation was strongly associated with school attendance. Evaluation of a menstrual management intervention that address both psychosocial (e.g. self-confidence, attitudes) and physical (e.g. management of pain, use of adequate menstrual hygiene materials, improved water and sanitation facilities) aspects of menstruation are needed.

Dealing with disclosure: Perspectives from HIV-positive children and their older carers living in rural south-western Uganda.

There are limited data on the challenges faced by carers, in particular older carers, in managing the difficult task of status disclosure for HIV-positive children. We report findings from qualitative interviews with 18 care dyads of older people and HIV-positive children living in rural south-western Uganda. Our data provide insights into perceptions and norms influencing communication during and following disclosure among both carers and children, including those shaped by gendered expectations of girls' and boys' sexual behaviour. Young participants reported several advantages of knowing their status and showed considerable resilience in the face of HIV disclosure. Better and more support is needed to help health workers and carers (particularly older carers) manage cross-generational communication around HIV disclosure and other related aspects of sexual and reproductive health as critical aspects of children's psychosocial development and well-being.

Why do men often not use condoms in their relationships with casual sexual partners in Uganda?

With a focus on Uganda, this paper examines men's condom use in sexual relationships with casual partners and what this might tell us about men's vulnerability to HIV-infection. We carried out repeat interviews with 31 men attending a clinic serving women at high risk for HIV infection and their partners in Kampala. We found that the experience of condom-less sex in the men's youth, itself the outcome of a restrictive home environment, was perceived as influencing later unsafe sexual behaviour. Peer pressure encouraged men to have multiple partners. Alcohol negatively affected condom use. Men often opted not to use a condom with women they thought looked healthy, particularly if they had had sex with the same woman before. Some men who were HIV-positive said they saw little point in using condoms since they were already infected. A concerted effort is required to reach men, like those in our study, to halt HIV and the transmission of other sexually transmitted infections.

Alcohol consumption and high risk sexual behaviour among female sex workers in Uganda.

Alcohol consumption has been associated with high risk sexual behaviour among key populations such as female sex workers. We explored the drivers of alcohol consumption and its relationship to high risk sexual behaviour. Participants were drawn from a cohort of 1027 women selected from 'hot spots' in the suburbs of Kampala city. We conducted 3 in-depth interviews with 40 female sex workers between 2010 and 2011. Data were analysed thematically, focusing on alcohol use within the context of sex work. Alcohol consumption was very high with only seven women reporting that they did not drink. Alcohol consumption was driven by the emotional and economic needs of the participants, but also promoted by clients who encouraged consumption. Many sex workers only started drinking alcohol when they joined sex work on the advice of more experienced peers, as a way to cope with the job. Alcohol was blamed for unsafe sex, acts of violence and poor decision making which increased sexual and physical violence. Alcohol was reported to affect medication adherence for HIV-positive women who forgot to take medicine. The findings suggest that the drivers of alcohol consumption are multifaceted in this group and require both individual and structural interventions. Alcohol reduction counselling can be supportive at the individual level and should be an integral part of HIV prevention programmes for female sex workers and others such as patrons in bars. The counselling should be addressed in a sensitive manner to bar owners and managers.

A Qualitative Exploration of Causes of Depression among Persons Living with HIV Receiving Antiretroviral Therapy in Uganda: Implications for Policy.

Introduction: Depression is the fourth leading cause of the global disease burden and worsens the outcome of comorbidities including HIV/AIDS. Depression is particularly problematic among persons living with HIV in sub-Saharan Africa where scarcity of cost-effective interventions is compounded by inadequate understanding of the disease. We examine risk factors for depression among persons living with HIV undergoing antiretroviral treatment in Uganda and discuss policy implications. Methods: A qualitative study using a narrative approach was conducted, the formative phase of a large study to develop a model for integrating depression management into routine HIV care in Uganda. Participants were purposively sampled at four public health facilities in Mpigi District. In-depth interviews were conducted with four clinicians, three supervisors, and 11 persons living with HIV and suffering from depression, as were three focus group discussions with lay health workers. Exit interviews were conducted with 17 persons living with HIV who completed/interrupted depression treatment but had not been interviewed. Only data collected from persons living with HIV and lay health workers were analysed for the purpose of this paper. A narrative thematic approach was used in data analysis. Findings. There were several pathways through which lack of family social support reportedly led to depression: worries about disclosure in discordant relationships, false perceptions of social support, stigmatisation and discrimination, and domestic violence. Economic/poverty and other causes were identified, but their role was less significant or moderated by family social support. Conclusion: Family social support plays a dominant role-both directly and indirectly-in influencing depression risk. We propose the mainstreaming of formal psychosocial support and a shift from individual to family-focused counselling that targets both persons living with HIV and their family.

Physical and sexual victimization of persons with severe mental illness seeking care in central and southwestern Uganda.

Purpose: This study established the prevalence of physical and sexual victimization, associated factors and psychosocial consequences of victimization among 1,201 out-patients with severe mental illness at Butabika and Masaka hospitals in Uganda. Methods: Participants completed structured, standardized and locally translated instruments. Physical and sexual victimization was assessed using the modified adverse life events module of the European Para-suicide Interview Schedule. We used logistic regression to determine the association between victimization, the associated factors and psychosocial consequences. Results: The prevalence of physical abuse was 34.1% and that of sexual victimization was 21.9%. The age group of > = 50 years (aOR 1.02;95% CI 0.62-1.66; p = 0.048) was more likely to have suffered physical victimization, while living in a rural area was protective against physical (aOR 0.59; 95% CI 0.46-0.76; p = <0.001) and sexual (aOR 0.48, 95% CI 0.35-0.65; p < 0.001) victimization. High socioeconomic status (SES) (aOR 0.56; 95% CI 0.34-0.92; p = <0.001) was protective against physical victimization. Females were more likely to have been sexually victimized (aOR 3.38; 95% CI 2.47-4.64; p = <0.001), while being a Muslim (aOR 0.60; 95% CI 0.39-0.90; p = 0.045) was protective against sexual victimization. Risky sexual behavior was a negative outcome associated with physical (aOR 2.19; 95% CI 1.66-2.90; p = <0.001) and sexual (aOR 3.09; 95% CI 2.25-4.23; p < 0.001) victimization. Mental health stigma was a negative outcome associated with physical (aOR 1.03; 95% CI 1.01-1.05; p < 0.001) and sexual (aOR 1.03; 95% CI 1.01-1.05; p = 0.002) victimization. Poor adherence to oral anti-psychotic medications was a negative outcome associated with physical (aOR 1.51; 95% CI 1.13-2.00; p = 0.006) and sexual (aOR 1.39; 95% CI 0.99-1.94; p = 0.044) victimization. Conclusion: There is a high burden of physical and sexual victimization among people with SMI in central Uganda. There is need to put in place and evaluate complex interventions for improving detection and response to abusive experiences within mental health services. Public health practitioners, policymakers, and legislators should act to protect the health and rights of people with SMI in resource poor settings.

Stakeholders' perspectives on integrating the management of depression into routine HIV care in Uganda: qualitative findings from a feasibility study.

BACKGROUND: HIV/AIDS continues to be a major global public health problem with Eastern and Southern Africa being the regions most affected. With increased access to effective antiretroviral therapy, HIV has become a chronic and manageable disease, bringing to the fore issues of quality of life including mental wellbeing. Despite this, the majority of HIV care providers in sub-Saharan Africa, including Uganda's Ministry of Health, do not routinely provide mental health care including depression management. The purpose of this paper is to explore stakeholders' perspectives on the feasibility and acceptability of integrating depression management into routine adult HIV care. The paper addresses a specific objective of the formative phase of the HIV + D study aimed at developing and evaluating a model for integrating depression management into routine HIV care in Uganda. METHODS: This was a qualitative study. Data were collected through in-depth interviews with 11 patients at enrollment and follow-up in the pilot phase, and exit interviews with 11 adherent patients (those who completed their psychotherapy sessions) and six non-adherent patients (those missing at least two sessions) at the end of the pilot phase. Key informant interviews were held with four clinicians, five supervisors and one mental health specialist, as were three focus group discussions with lay health workers. These were purposively sampled at four public health facilities in Mpigi District. Data were analysed thematically. RESULTS: Patients highlighted the benefits of treating depression in the context of HIV care, including improved adherence to antiretroviral therapy, overcoming sleeplessness and suicidal ideation, and regaining a sense of self-efficacy. Although clinicians and other stakeholders reported benefits of treating depression, they cited challenges in managing depression with HIV care, which were organisational (increased workload) and patient related (extended waiting time and perceptions of preferential treatment). Stakeholders generally shared perspectives on how best to integrate, including recommendations for organisational level interventions-training, harmonisation in scheduling appointments and structural changes-and patient level interventions to enhance knowledge about depression. CONCLUSIONS: Integrating depression management into routine HIV care in Uganda is acceptable among key stakeholders, but the technical and operational feasibility of integration would require changes both at the organisational and patient levels.

What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.

Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants' needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study.

Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia.

The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use.

Soccer-based promotion of voluntary medical male circumcision: A mixed-methods feasibility study with secondary students in Uganda.

The Ugandan government is committed to scaling-up proven HIV prevention strategies including safe male circumcision, and innovative strategies are needed to increase circumcision uptake. The aim of this study was to assess the acceptability and feasibility of implementing a soccer-based intervention ("Make The Cut") among schoolboys in a peri-urban district of Uganda. The intervention was led by trained, recently circumcised "coaches" who facilitated a 60-minute session delivered in schools, including an interactive penalty shoot-out game using metaphors for HIV prevention, sharing of the coaches' circumcision story, group discussion and ongoing engagement from the coach to facilitate linkage to male circumcision. The study took place in four secondary schools in Entebbe sub-district, Uganda. Acceptability of safe male circumcision was assessed through a cross-sectional quantitative survey. The feasibility of implementing the intervention was assessed by piloting the intervention in one school, modifying it, and implementing the modified version in a second school. Perceptions of the intervention were assessed with in-depth interviews with participants. Of the 210 boys in the cross-sectional survey, 59% reported being circumcised. Findings showed high levels of knowledge and generally favourable perceptions of circumcision. The initial implementation of Make The Cut resulted in 6/58 uncircumcised boys (10.3%) becoming circumcised. Changes made included increasing engagement with parents and improved liaison with schools regarding the timing of the intervention. Following this, uptake improved to 18/69 (26.1%) in the second school. In-depth interviews highlighted the important role of family and peer support and the coach in facilitating the decision to circumcise. This study showed that the modified Make The Cut intervention may be effective to increase uptake of safe male circumcision in this population. However, the intervention is time-intensive, and further work is needed to assess the cost-effectiveness of the intervention conducted at scale.

Exploring the care relationship between grandparents/older carers and children infected with HIV in south-western Uganda: implications for care for both the children and their older carers.

The care of children orphaned by HIV/AIDS in sub-Saharan Africa is often undertaken by grandparents, yet little is known about the care relationship between grandparent and grandchild. Our aim was to examine this relationship to understand the needs and responsibilities of both the HIV positive child and older carer and the nature of the relationship, and to assess the implications for care for the children and the older carers. A qualitative study was conducted with 40 purposively sampled children (13-17 years) and their older carers (50 years and above). Participants were recruited from two clinics in south-western Uganda. Up to three semi-structured interviews were held with each participant. Data were analysed using a thematic framework approach. We found that the care relationship was mostly reciprocal: HIV positive children depended on carers for basic and health needs and carers counted on the children for performing tedious household tasks. The relationship was also characterised by challenges, sometimes causing tension between child and carer. We conclude that: (1) interventions targeting HIV positive children need to also address the needs of older carers, and (2) carers and children would benefit from psychosocial support and social protection.