Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa.

LAY ABSTRACT: Young children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers' mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers' capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers' well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant 'Well Beans for Caregivers' was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers' well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers' capacity to care for their children.

Barriers and facilitators to participation for children and adolescents with disabilities in low- and middle-income countries - A scoping review.

BACKGROUND: Research has shown that all children and adolescents have the right to participate in their everyday life. However, little is known about what impacts the participation of children and adolescents with disabilities living in low-and middle-income countries. OBJECTIVE: The present study undertakes a scoping review of research to synthesise the current literature about barriers and facilitators to participation in everyday life for children and adolescents with disabilities living in low- and middle-income countries. METHOD: A scoping review was conducted. The databases Psyc INFO, MEDLINE, CINAHL, Pubmed, ERIC and African Wide information were searched for studies published between 2001 and April 2018. Data was analysed using deductive content analysis. The barriers and facilitators to participation were categorised into personal factors, social factors, environmental factors, and policy and programme factors. RESULT: In the end, 17 articles were included for data extraction as they mentioned barriers and facilitators to participation for children and adolescents with disabilities. Most of the reviewed studies reported on barriers to participation. Only one of the studies was performed in a country classified as a low-income country; all other studies were performed in middle-income countries. The results indicate that some factors, especially social factors, could be perceived as both facilitators and barriers to participation. CONCLUSION: There is a lack of studies describing barriers and facilitators in low- and middle- income countries. Barriers and facilitators in proximity to the child and family are most frequently described in the literature.

The Participation of Children with Intellectual Disabilities: Including the Voices of Children and Their Caregivers in India and South Africa.

There is a shortage of research on the participation of children with intellectual disabilities from middle-income countries. Also, most child assessments measure either the child's or the caregiver's perceptions of participation. Participation, however, is an amalgamation of both perspectives, as caregivers play a significant role in both accessing and facilitating opportunities for children's participation. This paper reports on both perceptions-those of children with intellectual disabilities and those of their caregiver, in India and South Africa. A quantitative group comparison was conducted using the Children's Assessment of Participation and Enjoyment (CAPE) that was translated into Bengali and four South African languages. One hundred child-caregiver dyads from India and 123 pairs from South Africa participated in the study. The results revealed interesting similarities and differences in participation patterns, both between countries and between children and their caregivers. Differences between countries were mostly related to the intensity of participation, with whom, and where participation occurred. Caregiver and child reports differed significantly regarding participation and the enjoyment of activities. This study emphasises the need for consideration of cultural differences when examining participation and suggests that a combined caregiver-and-child-reported approach may provide the broadest perspective on children's participation.

Participation of young people with disabilities and/or chronic conditions in low- and middle-income countries: a scoping review.

AIM: The purpose of this scoping review was to describe and map the literature available on the participation of young people (0-21y) with disabilities and/or chronic conditions living in low- and middle-income countries (LMICs). METHOD: A systematic search and selection process identified 78 publications. Descriptive data were extracted using a data-charting form, and studies were mapped using the family of participation-related constructs framework. RESULTS: The findings demonstrated that, although the published evidence is steadily increasing, the participation research on this vulnerable population is still either absent or very scarce in the majority of LMICs, and very little is known about the participation of children with chronic health conditions. Most studies included in this review focused on attendance or 'being there'. INTERPRETATION: Although attendance is an important aspect, more needs to be done to understand children's experiences or involvement while attending, thus capturing both dimensions of participation. WHAT THIS PAPER ADDS: There is an increasing trend in research on participation patterns of children with disabilities in low- and middle-income countries. Most research focuses on children's attendance, or 'being there'. We know very little about children's involvement, or experience, while attending daily activities.

Child and adolescent mental health in Africa: A qualitative analysis of the perspectives of emerging mental health clinicians and researchers using an online platform.

Objective: Using a social ecological framework, this study aimed to establish emerging mental health clinicians and researchers' perspectives about child and adolescent mental health (CAMH) in Africa. Method: Perspectives of 17 participants from Ethiopia, Kenya, South Africa, Tunisia, Uganda and Zambia, whose professional backgrounds ranged from psychiatry to speech-language therapy, were collected at an African CAMH conference. Data were gathered using open-ended questions, using an online survey. Data were analysed using theoretical thematic analysis. Results: An adapted social ecological framework highlighted: An increased need for commitment from governments to improve CAMH in Africa; and addressing mental health stigma and discrimination through community awareness. The need for specialised CAMH facilities were identified, particularly in the public health sector. The need for multi-sectoral, multi-disciplinary partnerships for advocacy, service delivery, and continuity of care were also identified. Participants emphasised the importance of CAMH awareness, and the role of governments in recognising CAMH needs and using policies to improve CAMH in Africa. Participants were hopeful about the transformation of CAMH on the continent. Conclusion: The participants prioritised government- and community-level awareness to increase the resources and support offered by CAMH services in Africa.

Child and adolescent mental health in Africa: A qualitative analysis of the perspectives of emerging mental health clinicians and researchers using an online platform

Objective: Using a social ecological framework, this study aimed to establish emerging mental health clinicians and researchers' perspectives about child and adolescent mental health (CAMH) in Africa.Method: Perspectives of 17 participants from Ethiopia, Kenya, South Africa, Tunisia, Uganda and Zambia, whose professional backgrounds ranged from psychiatry to speech-language therapy, were collected at an African CAMH conference. Data were gathered using open-ended questions, using an online survey. Data were analysed using theoretical thematic analysis.Results: An adapted social ecological framework highlighted: An increased need for commitment from governments to improve CAMH in Africa; and addressing mental health stigma and discrimination through community awareness. The need for specialised CAMH facilities were identified, particularly in the public health sector. The need for multi-sectoral, multi-disciplinary partnerships for advocacy, service delivery, and continuity of care were also identified. Participants emphasised the importance of CAMH awareness, and the role of governments in recognising CAMH needs and using policies to improve CAMH in Africa. Participants were hopeful about the transformation of CAMH on the continent.Conclusion: The participants prioritised government- and community-level awareness to increase the resources and support offered by CAMH services in Africa

Family Quality of Life of South African Families Raising Children with Autism Spectrum Disorder.

This article describes the family quality of life among families who are raising a young child with autism spectrum disorder. Survey research was conducted with 180 families of children with autism spectrum disorder who were receiving disability-related services in the Gauteng province of South Africa. The principle measure used was the Beach Center Family Quality of Life Scale to assess five subdomains: family interaction, parenting, emotional well-being, material/physical well-being, and disability-related support. Results indicated that families felt the most satisfied with disability-related support and the least satisfied with the family's emotional well-being. Family income, family type, and the severity level of autism were significantly associated with how satisfied families felt about their quality of life.