Maria Zuurmond

Background: Stigma is a barrier to inclusion for people with disabilities and mental health conditions. There is increasing recognition of the need to address stigma within disability inclusive programmes, but limited research is available on what are effective participatory approaches to stigma reduction interventions. Objectives: (1) To document participatory approaches used in the design and delivery of disability stigma reduction interventions in a disability and mental health programme in Ghana and (2) to understand the experience of programme implementers and participants in these processes, with particular attention to the leadership and involvement of people with disabilities. Method: A mixed-methods study was conducted. The data were drawn from a purposive sample of 20 in-depth interviews (IDIs) with programme staff, partners and key stakeholders, and 12 focus group discussions (FGDs) with self-help group (SHG) members, organisation of people with disabilities (OPD) members, and disability champions. We conducted thematic analysis using deductive and inductive approaches. Results: The programme adopted several approaches to participation at design and implementation stages, with a focus on the leadership of people with disabilities and people with mental health conditions. The process was seen to promote acceptability of stigma reduction approaches. Providing opportunities for building and strengthening relationships with a wide range of stakeholders was key to successful implementation. Understanding, and engaging with, power dynamics in the local context also provided important benefits. Conclusions: Participation of people with disabilities and mental health conditions is essential for the design and delivery of stigma reduction programmes in Ghana. Contribution: This study provided lessons from the field on the value of participation in reducing stigma, and the role of key stakeholders, particularly people with disabilities and mental health conditions.

This study aimed to explore the factors that influence parental involvement in supporting the education of children with disabilities in Malawi, thereby generating insights into the barriers and facilitators they face. We conducted focus groups and in-depth interviews with 25 participants from Nkhata Bay District: teachers, parents, and children with disabilities. We used the COM-B model to analyse how parents’ capabilities, opportunities, and behaviours influence their involvement in their children’s education. This study revealed that parents of children with disabilities showed willingness, optimism regarding their children’s future, and a strong sense of responsibility for their education. However, factors such as the limited knowledge of children’s learning needs, time, low confidence, and financial challenges have constrained their involvement. Schools and communities frequently limit participation opportunities by not consistently practising or championing parental involvement in policies and actions. This study sheds light on the complex interplay between knowledge, practical constraints, and external support systems that shape parental involvement in the education of children with disabilities. Further research aimed at creating tailored and context-relevant interventions to improve parental involvement in the education of children with disabilities in low-income settings is required.

This study aimed to explore the factors that influence parental involvement in supporting 7 the education of children with disabilities in Malawi, thereby generating insights into the barriers 8 and facilitators they face. We conducted focus groups and in-depth interviews with 25 participants 9 from the Nkhata Bay District: teachers, parents, and children with disabilities. We used the COM-B 10 model to analyse how parents' capabilities, opportunities, and behaviours influence their involve- 11 ment in their children's education. The study revealed that parents of children with disabilities 12 showed willingness, optimism about their children's future, and a strong sense of responsibility for 13 their education. However, factors such as the limited knowledge of children's learning needs, time, 14 low confidence, and financial challenges have constrained their involvement. Schools and commu- 15 nities frequently limit participation opportunities by not consistently practicing or championing pa- 16 rental involvement in policies or actions. The study sheds light on the complex interplay between 17 knowledge, practical constraints, and external support systems that shape parental involvement in 18 the education of children with disabilities. Further research aimed at creating tailored and context- 19 relevant interventions to improve parental involvement in the education of children with disabilities 20 in low-income settings is required.

The journal is published for the purpose of advancing scholarship in disability studies and rehabilitation sciences in a uniquely African context. Widely read by scholars, professionals and students, it encourages scholarly exchange between all disciplines and academics from low, middle and high-income countries to work towards the improvement of human development and its practices across the continent.

Families of children with disabilities experience stigma by association with their child. This article examines social and internalised stigma experienced in the family by caregivers who participated in a caregiver programme in Ghana. Stigma is pervasive, and gendered, with most mothers blamed for bringing disability into the home. Emotional distress, isolation and lack of support are common experiences. We argue that the mothers can experience forms of disablism. Stigma is multi-layered, and a range of factors intersect with disability-related stigma, including poverty. A support group model can have a positive impact on caregiver internalised stigma and begin to address isolation. This should be part of a wider package of support to address wider structural issues. Families can play an important role in mediating change, but first we need to better understand the social disruption caused by disability-related stigma at the familial level.

The journal is published for the purpose of advancing scholarship in disability studies and rehabilitation sciences in a uniquely African context. Widely read by scholars, professionals and students, it encourages scholarly exchange between all disciplines and academics from low, middle and high-income countries to work towards the improvement of human development and its practices across the continent.

The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response.

One major barrier to uptake of diabetic retinopathy (DR) services is lack of knowledge and awareness of DR among the people with diabetes (PwDM). Targeted health education (HE) can be a key element in improving the uptake of eye care services. Such interventions are lacking in Sri Lanka. A local context specific HE intervention (HEI) was developed by adopting available resources and incorporating views from PwDM and key stakeholders. Four sessions of participatory workshops with PwDM (20 Sinhala and 13 Tamil speaking) and two stage 12 stakeholder interviews were conducted to both develop and pre-test the material. The products were a video and a leaflet, delivered at a medical clinic to a sample of 45 PwDM identified as having DR. Semi-structured interviews were conducted after 4 weeks, to evaluate the acceptability and comprehension of the HEI. Additionally, nine interviews were conducted with clinical providers to explore process issues related to delivery of the HEI. Data analysis was conducted using thematic analysis. The lack of knowledge and awareness on DR, and of the importance of regular DR screening and follow up, combined with poor information on referral pathways were key elements identified from the workshops with PwDM. The stakeholders prioritised the importance of using simple language, and the need for emphasis on improving understanding about the asymptomatic phase of DR. The overall acceptability of the HEI material was satisfactory, although there was some difficulty with interpretation of medical images. Overall, although PwDM liked the ideas of the video, the leaflet was seen as a more practical option, given the busy clinic environment. The key issue was both formats required interaction with the provider, in order to support understanding of the messages. The process of adapting HE material is not simply translation into the appropriate language. Instead, a tailored approach in a country, context and particular health services setting is needed. This study illustrates the value of using a participatory approach and involving PwDM and stakeholders in the adaptation and pilot testing of a HEI to improve uptake of screening for DR in the context of Sri Lanka.

Blindness and visual impairment from diabetic retinopathy (DR) are avoidable through early detection and timely treatment. The Western Province of Sri Lanka has the highest prevalence of diabetes mellitus (DM) (18.6%) in the country. A situational analysis identified a significant gap in DR screening services (DRSS) uptake in this region. Barriers that hinder people with DM (PwDM) from attending DRSS are poorly understood. The purpose of this study is to understand the factors which influence the uptake of DRSS and follow-up to inform health promotion strategies and improve the uptake of these services. Eleven focus group discussions (FGDs) were conducted with PwDM who presented to medical, general eye and vitreoretinal services in three public sector institutions (two tertiary and one secondary level) in the Western Province between October 2016 and March 2017. We enrolled six groups (four Sinhala speaking, two Tamil) of women and five groups (three Sinhala and two Tamil) of men representing ethnicity and gender. We performed a thematic analysis and described the main themes and subthemes using the socio-ecological model as a framework. We identified lack of knowledge of both the condition and the need for screening as key barriers to access DRSS. Socio-cultural factors in the family environment, economic reasons and institutional factors were also important barriers. Additional reasons include long waiting time at eye clinics and poor referrals exacerbated by the lack of a systematic DRSS. In addition, attitudes to DRSS such as fear of discomfort from the procedure and the need for accompaniment following mydriasis were also deterrents to follow-up screening. This study has shown that there are inter-related user, family, and institutional factors which affect the uptake of DRSS. Understanding how DR is conceptualised by PwDM in this region is essential to refine strategies to improve access to DRSS. Strategies to improve knowledge need to be more culturally acceptable and relevant to PwDM and their families, with increased availability of DRSS at convenient locations may increase timely uptake of screening.