Obuntu bulamu: Parental peer-to-peer support for inclusion of children with disabilities in Central Uganda.

Background: Obuntu bulamu, a peer-to-peer support intervention for children, parents and teachers to improve the participation and inclusion of children with disabilities (CwD), was developed and tested in Uganda. The intervention consisted of disability-inclusive peer-to-peer training and support activities. In this article, parent participation in and evaluation of the intervention are discussed. Objectives: The study aims to evaluate the acceptability and feasibility of the intervention. Methods: A qualitative Afrocentric intervention study was implemented in 10 schools in Wakiso district in Central Uganda. Researchers purposely selected CwD aged 8-14 years, their peers and parents from 10 primary schools with on average three CwD per school. A total of 64 study parents (33 parents of CwD and 31 peers) were interviewed at baseline and endline. Two focus group discussions were held with 14 parents at midline. Parents also participated in a consultative meeting about the intervention design at baseline and two evaluation and feedback workshops at midline and endline. Thematic data analysis was conducted. Results: Findings showed that parents found the intervention inspiring, acceptable, culturally appropriate and supportive, as it built on values and practices from their own cultural tradition. Parents reported that the intervention enhanced a sense of togetherness and belonging and helped them to develop more positive attitudes towards CwD and disability inclusion. They felt the intervention increased participation and inclusion of CwD at home, school and in communities. Conclusion: The Obuntu bulamu peer-to-peer support intervention is an acceptable, culturally appropriate intervention with the potential to improve inclusion of CwD. Further studies are recommended to measure the effectiveness of the intervention. Contribution: The paper contributes to existing evidence that there is need for more Afrocentric interventions, which built on cultural values and practices. Interventions based on indigenous values have a greater potential to be acceptable, can foster integration and are likely to be more sustainability to achieve disability inclusion. In the article we describe parental perspectives of the Obuntu bulamu intervention, an intervention to improve inclusion of children with disabilities, which was designed by children, parents, teachers, educationalists, and academics from Uganda.

Early care and support for young children with developmental disabilities and their caregivers in Uganda: The Baby Ubuntu feasibility trial.

Background: Early care and support provision for young children with developmental disabilities is frequently lacking, yet has potential to improve child and family outcomes, and is crucial for promoting access to healthcare and early education. We evaluated the feasibility, acceptability, early evidence of impact and provider costs of the Baby Ubuntu participatory, peer-facilitated, group program for young children with developmental disabilities and their caregivers in Uganda. Materials and methods: A feasibility trial, with two parallel groups, compared Baby Ubuntu with standard care. Caregivers and children, aged 6-11 months with moderate-severe neurodevelopmental impairment, were recruited and followed for 12 months. Quantitative and qualitative methods captured information on feasibility (ability to recruit), acceptability (satisfactory attendance), preliminary evidence of impact (family quality of life) and provider costs. Results: One hundred twenty-six infants (median developmental quotient, 28.7) were recruited and randomized (63 per arm) over 9 months, demonstrating feasibility; 101 (80%) completed the 12-month follow-up assessment (9 died, 12 were lost to follow up, 4 withdrew). Of 63 randomized to the intervention, 59 survived (93%); of these, 51 (86%) attended ≥6 modules meeting acceptability criteria, and 49 (83%) completed the 12 month follow-up assessment. Qualitatively, Baby Ubuntu was feasible and acceptable to caregivers and facilitators. Enabling factors included community sensitization by local champions, positive and caring attitudes of facilitators toward children with disability, peer support, and the participatory approach to learning. Among 101 (86%) surviving children seen at 12 months, mixed methods evaluation provided qualitative evidence of impact on family knowledge, skills, and attitudes, however impact on a scored family quality of life tool was inconclusive. Barriers included stigma and exclusion, poverty, and the need to manage expectations around the child's progress. Total provider cost for delivering the program per participant was USD 232. Conclusion: A pilot feasibility trial of the Baby Ubuntu program found it to be feasible and acceptable to children, caregivers and healthcare workers in Uganda. A mixed methods evaluation provided rich programmatic learning including qualitative, but not quantitative, evidence of impact. The cost estimate represents a feasible intervention for this vulnerable group, encouraging financial sustainability at scale. Clinical trial registration: [https://doi.org/10.1186/ISRCTN44380971], identifier [ISRCTN44380971].

Menstrual characteristics, menstrual anxiety and school attendance among adolescents in Uganda: a longitudinal study.

BACKGROUND: Qualitative data show negative impacts of menstruation on health and education in many settings, but there are few longitudinal quantitative studies of the impact of menstruation. We analyse associations with menstrual anxiety and school attendance in a study of Ugandan secondary school students. METHODS: Data were from a longitudinal pilot study of a menstrual health intervention (MENISCUS), conducted in two secondary schools in Entebbe sub-district, Uganda. Self-completed menstrual-related data, including menstrual anxiety, were collected from 232 participants pre- and post-intervention. A sub-cohort of 100 randomly-selected post-menarcheal girls were asked to self-complete daily diaries during 10 months of follow-up, with data on menstrual flow, pain, and school attendance. We used multivariable logistic regression to estimate associations with menstrual anxiety among all girls at baseline, and random-effects logistic regression to estimate associations of menstrual characteristics with school non-attendance for 3 months pre-intervention in the sub-cohort, adjusting for within-girl clustering. RESULTS: Overall, 130/222 (58.6%) of menstruating girls reported being anxious about their next period. Menstrual anxiety was higher in those not living with their mother (adjusted odds ratio (OR) = 1.91; 95% confidence interval (CI) 1.01-3.60), believing menstrual myths (aOR = 1.83; 0.95-3.50 for not agreeing that it is healthy for a girl to run, dance or cycle during her period; aOR = 1.97; 1.04-3.73 for agreeing that when a girl has her period she is unclean), lower menstrual confidence (aOR = 2.49; 1.33-4.65 for avoiding physical activity during her period; aOR = 1.68; 0.89-3.17 for not feeling comfortable to talk to other girls about her period; aOR = 2.89; 1.28-6.54 for agreeing that boys/girls tease them about their periods; and aOR = 2.27; 1.21-4.27 for worrying about being teased during her period). Those with lower knowledge about menstruation were less likely to report anxiety (aOR = 0.44; 0.23-0.84). During the pre-intervention period of the sub-cohort, school non-attendance was associated with menstrual pain, with 21.7% of girls missing school on days when they reported pain vs. 8.3% on days when no pain was reported (aOR = 3.82; 1.66-8.77). CONCLUSIONS: Menstruation causes substantial anxiety in Ugandan schoolgirls, and menstrual pain is associated with missing school on period-days. Menstrual health interventions should address socio-cultural aspects of menstruation to reduce anxiety, and provide education on pain management strategies to support school attendance.

Surviving and Thriving: Early Intervention for Neonatal Survivors With Developmental Disability in Uganda.

Global attention on early child development, inclusive of those with disability, has the potential to translate into improved action for the millions of children with developmental disability living in low- and middle-income countries. Nurturing care is crucial for all children, arguably even more so for children with developmental disability. A high proportion of survivors of neonatal conditions such as prematurity and neonatal encephalopathy are affected by early child developmental disability. The first thousand days of life is a critical period for neuroplasticity and an important window of opportunity for interventions, which maximize developmental potential and other outcomes. Since 2010, our group has been examining predictors, outcomes, and experiences of neonatal encephalopathy in Uganda. The need for an early child intervention program to maximize participation and improve the quality of life for children and families became apparent. In response, the "ABAaNA early intervention program," (now re-branding as 'Baby Ubuntu') a group participatory early intervention program for young children with developmental disability and their families, was developed and piloted. Piloting has provided early evidence of feasibility, acceptability, and impact and a feasibility trial is underway. Future research aims to develop programmatic capacity across diverse settings and evaluate its impact at scale.

Assessing the effectiveness of a comprehensive menstrual health intervention program in Ugandan schools (MENISCUS): process evaluation of a pilot intervention study.

BACKGROUND: Poor menstrual health and hygiene (MHH) is a globally recognised public health challenge. A pilot study of an MHH intervention was conducted in two secondary schools in Entebbe, Uganda, over 9 months. The intervention included five components delivered by the implementing partner (WoMena Uganda) and the research team: (i) training teachers to implement government guidelines for puberty education, (ii) a drama skit to reduce stigma about menstruation, (iii) training in use of a menstrual kit (including re-usable pads), (iv) guidance on pain relief methods including provision of analgesics and (v) improvements to school water, sanitation and hygiene (WASH) facilities. The aim of the process evaluation was to examine implementation, context and possible causal pathways. METHODS: We collected information on fidelity, dose, reach, acceptability, context and mechanisms of impact using (i) quantitative survey data collected from female and male students in year 2 of secondary school (ages 13-21; 450 at the baseline and 369 at endline); (ii) qualitative data from 40 in-depth interviews with parents, teachers and female students, and four focus group discussions with students, stratified by gender; (iii) data from unannounced visits checking on WASH facilities throughout the study; and (iv) routine data collected as part of the implementation. Quantitative data were used primarily to assess fidelity, dose and reach. Qualitative data were used primarily to assess acceptability, context and possible mechanisms. RESULTS: Both schools received all intervention elements that were delivered by the research team and implementing partner. The drama skit, menstrual kit and pain management intervention components were delivered with fidelity. Intervention components that relied on school ownership (puberty education training and WASH improvements) were not fully delivered. Overall, the intervention was acceptable to participants. Multilevel contextual factors including schools' social and physical environment, and family, cultural and social factors influenced the acceptability of the intervention in the school setting. The intervention components reinforced one another, as suggested in our theoretical framework. CONCLUSION: The intervention was feasible to deliver and acceptable to the schools and students. We propose a full-scale cluster-randomised trial to evaluate the intervention, adding a school-based MHH leadership group to address issues with school ownership. TRIAL REGISTRATION: ClinicalTrials.gov NCT04064736. Registered August 22, 2019, retrospectively registered.

Menstrual health intervention and school attendance in Uganda (MENISCUS-2): a pilot intervention study.

OBJECTIVES: Achieving good menstrual health and hygiene (MHH) is a public health challenge and there is little evidence to inform interventions. The aim of this study was to pilot test an intervention to improve MHH and school attendance in Uganda, in preparation for a future cluster-randomised trial. DESIGN: Longitudinal study with pre-post evaluation of a pilot intervention. SETTING: Two secondary schools in Entebbe, Uganda. PARTICIPANTS: Of the 473 eligible students in secondary 2 (S2) at baseline, 450 (95.1%; 232 girls and 218 boys) consented/assented. 369 students (188 girls; 81.0%; and 181 boys; 83.0%) participated in the endline survey. INTERVENTION: The intervention comprised training teachers to improve delivery of government guidelines for puberty education, training in use of a menstrual kit and pain management, a drama skit, provision of analgesics and improvements to school water and sanitation hygiene facilities. PRIMARY AND SECONDARY OUTCOME MEASURES: Feasibility and acceptability of delivering the intervention. Baseline and endline quantitative surveys were conducted, with qualitative interviews conducted at endline. School attendance was assessed using self-completed daily diaries among a nested cohort of 100 female students. RESULTS: There were high levels of uptake of the individual and behavioural intervention components (puberty education, drama skit, menstrual hygiene management (MHM) kit and pain management). The proportion of girls reporting anxiety about next period decreased from 58.6% to 34.4%, and reported use of effective pain management increased from 76.4% to 91.4%. Most girls (81.4%) reported improved school toilet facilities, which improved their comfort managing menstruation. The diary data and qualitative data indicated a potential intervention impact on improving menstrual-related school absenteeism. CONCLUSIONS: The pilot study showed that the multicomponent MHM intervention was acceptable and feasible to deliver, and potentially effective in improving menstruation knowledge and management. A cluster-randomised trial is needed to evaluate rigorously the intervention effects on MHM and school attendance. TRIAL REGISTRATION NUMBER: NCT04064736; Pre-results.

Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol.

INTRODUCTION: Early intervention programmes (EIPs) for infants with neurodevelopmental impairment have been poorly studied especially in low-income settings. We aim to evaluate the feasibility and acceptability of a group participatory EIP, the 'ABAaNA EIP', for young children with neurodevelopmental impairment in Uganda. METHODS AND ANALYSIS: We will conduct a pilot feasibility, single-blinded, randomised controlled trial comparing the EIP with standard care across two study sites (one urban, one rural) in central Uganda. Eligible infants (n=126, age 6-11 completed months) with neurodevelopmental impairment (defined as a developmental quotient <70 on Griffiths Scales of Mental Development, and, or Hammersmith Infant Neurological Examination score <60) will be recruited and randomised to the intervention or standard care arm. Intervention arm families will receive the 10-modular, peer-facilitated, participatory, community-based programme over 6 months. Recruited families will be followed up at 6 and 12 months after recruitment, and assessors will be blinded to the trial allocation. The primary hypothesis is that the ABAaNA EIP is feasible and acceptable when compared with standard care. Primary outcomes of interest are feasibility (number recruited and randomised at baseline) and acceptability (protocol violation of arm allocation and number of sessions attended) and family and child quality of life. Guided by the study aim, the qualitative data analysis will use a data-led thematic framework approach. The findings will inform scalability and sustainability of the programme. ETHICS AND DISSEMINATION: The trial protocol has been approved by the relevant Ugandan and UK ethics committees. Recruited families will give written informed consent and we will follow international codes for ethics and good clinical practice. Dissemination will be through peer-reviewed publications, conference presentations and public engagement. TRIAL REGISTRATION NUMBER: ISRCTN44380971; protocol version 3.0, 19th February 2018.

The role of children in their HIV-positive parents' management of antiretroviral therapy in Uganda.

Adjustment to life on antiretroviral therapy (ART) and living with HIV as a long-term chronic condition, pose significant medical, social and economic challenges. We investigated children's role in supporting HIV-positive parents to self-manage life on ART. Between 2010 and 2012, we conducted a qualitative study using semi-structured interviews with 38 HIV-positive parents who had been on ART for over a year. They were randomly selected from people accessing ART from three delivery sites in Wakiso district, Uganda. Data were analysed thematically. Participants reported children between the ages of 1 and 47 years providing support. Children were a source of happiness, self-worth, encouragement, and comfort. Both younger and older children supported parents' adherence to treatment through reminding them to take the drugs and honour clinic appointments. Older children provided money to buy medication, food and shelter. Parents reported that the encouragement they received after they disclosed to their children enhanced their survival. After HIV disclosure to their children many of their fears about the future were allayed. Thinking about their children's future brought hope. However, looking after younger children while on ART could be burdensome since some parents could not work to their full capacity due to reduced physical health. Children are an important resource in their parents' adjustment to living with HIV while taking ART. There is a need for children to be supported by appropriate policy and other social and health development structures.

Test and treat: the early experiences in a clinic serving women at high risk of HIV infection in Kampala.

At the end of 2013, the Government of Uganda issued guidance recommending provision of Anti-Retroviral Treatment (ART) to HIV-positive people in key populations, including female sex workers, regardless of CD4 cell count. We describe the implementation of this new guidance in a clinic serving women at high risk of HIV infection in Kampala. Between July and December 2015, we conducted repeat in-depth interviews with 15 women attending the clinic after the change in guidelines, to explore their perceptions regarding prompt ART initiation. The sample included some women who were HIV-negative and women who had both started and deferred ART. We conducted a data-led thematic analysis of the material from the interviews. A total of 257 of 445 eligible women had started ART; others were undecided or had not returned to the clinic after receiving the new information. Participants recounted varying experiences with the provision of prompt treatment. At an individual level, a history of treatment for opportunistic infections and other illnesses, coupled with relatively poor health, encouraged some to initiate ART promptly. However, knowledge of friends/relatives already on ART who had experienced side effects caused others to delay starting, fearing the same experience for themselves. A number of women questioned why they should start treatment when they were not sick. Situational factors such as work and residence (with many sharing single rooms) caused discomfort among newly diagnosed women who feared disclosure and stigma that would result from taking ART when they were not ill. Alcohol consumption and irregular working hours affected perceptions of future adherence, making prompt ART harder to embrace for some. Our findings show the challenges that influence the delay of treatment initiation, and/or the decision to defer receiving information on ART, with implications for the success of the test and treat programmes and guidelines.

Finding Meaning: HIV Self-Management and Wellbeing among People Taking Antiretroviral Therapy in Uganda.

The health of people living with HIV (PLWH) and the sustained success of antiretroviral therapy (ART) programmes depends on PLWH's motivation and ability to self-manage the condition over the long term, including adherence to drugs on a daily basis. PLWH's self-management of HIV and their wellbeing are likely to be interrelated. Successful self-management sustains wellbeing, and wellbeing is likely to motivate continued self-management. Detailed research is lacking on PLWH's self-management processes on ART in resource-limited settings. This paper presents findings from a study of PLWH's self-management and wellbeing in Wakiso District, Uganda. Thirty-eight PLWH (20 women, 18 men) were purposefully selected at ART facilities run by the government and by The AIDS Support Organisation in and around Entebbe. Two in-depth interviews were completed with each participant over three or four visits. Many were struggling economically, however the recovery of health and hope on ART had enhanced wellbeing and motivated self-management. The majority were managing their condition well across three broad domains of self-management. First, they had mobilised resources, notably through good relationships with health workers. Advice and counselling had helped them to reconceptualise their condition and situation more positively and see hope for the future, motivating their work to self-manage. Many had also developed a new network of support through contacts they had developed at the ART clinic. Second, they had acquired knowledge and skills to manage their health, a useful framework to manage their condition and to live their life. Third, participants were psychologically adjusting to their condition and their new 'self': they saw HIV as a normal disease, were coping with stigma and had regained self-esteem, and were finding meaning in life. Our study demonstrates the centrality of social relationships and other non-medical aspects of wellbeing for self-management which ART programmes might explore further and encourage.

Antiretroviral therapy and changing patterns of HIV stigmatisation in Entebbe, Uganda.

Antiretroviral therapy (ART) has the potential to change processes of HIV stigmatisation. In this article, changing processes of stigmatisation among a group of people living with HIV (PLWH) on ART in Wakiso District, Uganda, are analysed using qualitative data from a study of PLWH's self-management of HIV on ART. There were 38 respondents (20 women, 18 men) who had been taking ART for at least 1 year. They were purposefully selected from government and non-government ART providers. Two in-depth interviews were held with each participant. Processes of reduced self-stigmatisation were clearly evident, caused by the recovery of their physical appearance and support from health workers. However most participants continued to conceal their status because they anticipated stigma; for example, they feared gossip, rejection and their status being used against them. Anticipated stigma was gendered: women expressed greater fear of enacted forms of stigma such as rejection by their partner; in contrast men's fears focused on gossip, loss of dignity and self-stigmatisation. The evidence indicates that ART has not reduced underlying structural drivers of stigmatisation, notably gender identities and inequalities, and that interventions are still required to mitigate and tackle stigmatisation, such as counselling, peer-led education and support groups that can help PLWH reconstruct alternative and more positive identities. A video abstract of this article can be found at: https://youtu.be/WtIaZJQ3Y_8.