'Impairments of the brain': Global South perspectives on childhood neurodevelopmental disability.

The word 'disability' does not exist in most African languages. There are words for impairments that describe the 'missing' or affected body parts, but no specific words to characterize, for instance, neurodevelopmental conditions. In this narrative review we focus on the different interpretations of neurodevelopmental conditions in Uganda and discuss the importance of cultural concepts and the intersectionality of family-centred care, poverty, and neocolonialism when working with children with 'impairments of the brain'. We suggest that these concepts should be taken into consideration in health care service provision and public health awareness campaigns, and the need to rethink how disabled children can be included in a 'global' health approach. We explain how applying biomedical categories used in the Global North to diagnose children is only ethical if this information will benefit the child and is accompanied by supportive actions that are relevant to the child and family setting. We argue for the enhancement of community-based structures of belonging and interdependence that are already in place and strengthening of family and community networks to continue the care and co-responsibility for children with 'impairments of the brain'. WHAT THIS PAPER ADDS: Cultural concepts, family-centred care, poverty, and neocolonialism are key in defining disability in the Global South. Diagnosis of a neurodevelopmental condition should be accompanied by supportive actions relevant to the child's setting. Interventions need to build on family and community-based structures of belonging and interdependence. Health care services and public health awareness campaigns should be made culturally relevant.

Use of Virtual Reality Distraction to Reduce Child Pain and Fear during Painful Medical Procedures in Children with Physical Disabilities in Uganda: A Feasibility Study.

OBJECTIVE: This study explored the acceptability and feasibility of the use of low-cost virtual reality (VR) glasses, and the Wong-Baker Faces Pain Scale and Children's Fear Scale scales, for pain and fear reduction in children admitted at the septic ward of CoRSU Rehabilitation Hospital in Uganda. METHODS: In total, 79 children aged 4-17 years of age were offered to watch cartoons using VR glasses while undergoing painful dressing procedures. Before and after the procedure, children were asked to index current pain; children and their caregivers were asked to rate anticipated fear. Focus group discussions with 13 children, 10 caregivers and 9 nurses explored acceptability and feasibility. Quantitative data were analyzed using STATA15, NVIVO12 was used for qualitative data analysis. RESULTS: The VR glasses were accepted by 76 (96%) of the children. Children, caregivers, and nurses mentioned the glasses were helpful in distracting children from the medical procedure and felt the use of the glasses helped reduce child fear and pain. Nurses felt it made their work easier. The Wong-Baker Faces Pain Scale was an acceptable and feasible method to measure pain, while the Children's Fear Scale was more difficult to interpret for our study population as they felt the faces on the scale were hard to read and identify with. CONCLUSIONS: The use of VR glasses may offer an acceptable and effective pain and fear reduction method in resource-constrained settings and should be further explored in a randomized controlled trial.

"[Repeat] testing and counseling is one of the key [services] that the government should continue providing": participants' perceptions on extended repeat HIV testing and enhanced counseling (ERHTEC) for primary HIV prevention in pregnant and lactating women in the PRIMAL study, Uganda.

BACKGROUND: The 'Primary HIV Prevention among Pregnant and Lactating Ugandan Women' (PRIMAL) randomized controlled trial aimed to assess an enhanced counseling strategy linked to extended postpartum repeat HIV testing and enhanced counseling among 820 HIV-negative pregnant and lactating women aged 18-49 years and 410 of their male partners to address the first pillar of the WHO Global Strategy for the Prevention of Mother-to-Child HIV transmission (PMTCT). This paper presents findings of qualitative studies aimed at evaluating participants' and service providers' perceptions on the acceptability and feasibility of the intervention and at understanding the effects of the intervention on risk reduction, couple communication, and emotional support from women's partners. METHODS: PRIMAL Study participants were enrolled from two antenatal care clinics and randomized 1:1 to an intervention or control arm. Both arms received repeat sexually transmitted infections (STI) and HIV testing at enrolment, labor and delivery, and at 3, 6, 12, 18 and 24 months postpartum. The intervention consisted of enhanced quarterly counseling on HIV risk reduction, couple communication, family planning and nutrition delivered by study counselors through up to 24 months post-partum. Control participants received repeat standard post-test counseling. Qualitative data were collected from intervention women participants, counsellors and midwives at baseline, midline and end of the study through 18 focus group discussions and 44 key informant interviews. Data analysis followed a thematic approach using framework analysis and a matrix-based system for organizing, reducing, and synthesizing data. RESULTS: At baseline, FGD participants mentioned multiple sexual partners and lack of condom use as the main risks for pregnant and lactating women to acquire HIV. The main reasons for having multiple sexual partners were 1) the cultural practice not to have sex in the late pre-natal and early post-natal period; 2) increased sexual desire during pregnancy; 3) alcohol abuse; 4) poverty; and 5) conflict in couples. Consistent condom use at baseline was limited due to lack of knowledge and low acceptance of condom use in couples. The majority of intervention participants enrolled as couples felt enhanced counselling improved understanding, faithfulness, mutual support and appreciation within their couple. Another benefit mentioned by participants was improvement of couple communication and negotiation, as well as daily decision-making around sexual needs, family planning and condom use. Participants stressed the importance of providing counselling services to all couples. CONCLUSION: This study shows that enhanced individual and couple counselling linked to extended repeat HIV and STI testing and focusing on HIV prevention, couple communication, family planning and nutrition is a feasible and acceptable intervention that could enhance risk reduction programs among pregnant and lactating women. TRIAL REGISTRATION: ClinicalTrials.gov registration number NCT01882998, date of registration 21st June 2013.

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.

High PMTCT program uptake and coverage of mothers, their partners, and babies in northern Uganda: achievements and lessons learned over 10 years of implementation (2002-2011).

BACKGROUND: The international nongovernmental organization "AVSI Foundation" has been actively supporting Uganda's Ministry of Health (MoH) prevention of mother-to-child HIV transmission (PMTCT) program since 2002 in 4 districts of the conflict-ridden Acholi subregion in Northern Uganda. OBJECTIVE: This article presents data covering 10 years of MoH/AVSI PMTCT program activities in Northern Uganda. METHODS: The program followed Uganda MoH PMTCT guidelines and aimed to be comprehensive, emphasizing social and medical care and support. Data were collected from 24 health facilities from January 2002 to December 2011. Trend analyses were carried out using Predictive Analytics SoftWare (PASW) Statistics 18. RESULTS: Of the 140,658 women who newly attended antenatal care services from 2002 to 2011, 94.4% received HIV testing and counseling and 6.2% tested HIV-positive. HIV testing and counseling of male partners of tested pregnant women steadily increased from 5.9% in 2002 to 75.8% in 2011, compared with 15.5% in 2011 nationally. Overall, 79.0% of HIV-positive women were started on antiretroviral prophylaxis (69.4%) or triple antiretroviral therapy (9.6%), compared with 52% nationally in 2011. The proportion of HIV-positive women who delivered in health facilities significantly increased from 55.8% in 2004 to 81.1% in 2011 (no national data available). HIV prevalence among HIV-exposed infants tested at or below 18 months of age significantly decreased from 10.3% in 2004 to 5.0% in 2011. CONCLUSIONS: Our results show how a comprehensive PMTCT program emphasizing social and community engagement alongside medical care and support can succeed in a remote setting with multiple challenges.