Community-based intervention to reduce stigma for children with disabilities in Lusaka, Zambia: a pilot.

PURPOSE: This pilot intervention aims to reduce stigma towards children with disabilities living in family-based care. MATERIALS AND METHODS: Kusamala + is a pre-post evaluation of a pilot community-based intervention in two low-income compounds in Lusaka, Zambia. Door-to-door canvassing and community referrals were used to identify and enroll children with disabilities. Parents/guardians and community members completed surveys regarding stigma and support. Health professionals supervised, trained, and provided ongoing support for 2-3 community caregivers (CCGs). CCG's provided home-based education, referrals, playgroups, and social support for 20-25 families each. Community events were held at health facilities, churches and community spaces to reduce community-level stigma towards children with disabilities. RESULTS: Staff identified 632 children with disabilities. Staff completed over 4500 home visits, 288 children joined playgroups, made 775 referrals, and over 23,000 attended community sensitization events. Longitudinal data was available for 129 families with a child with a disability. Over one year, families and community members reported less perceived rejection by family and peers but less agreement that children with disabilities should be treated the same as other children. CONCLUSION: Kusamala + was a feasible, acceptable and broad reach with limited program impact. Future work will incorporate lessons learned with a focus on sustainability and scalability.Implications for rehabilitationChildren with disability are often hidden and isolated in low- and middle-income countries (LMIC), particularly in low-resource communities.Stigma towards children with disabilities continues in LMIC and further reduces that child's ability to engage fully in social and civic life.Community- and home-based programming is a feasible and acceptable approach to engaging with community and families with a child with a disability.The identification and referral of additional children with disabilities to physiotherapy and other government services can provide additional strain on already limited resources.Once a pilot program is deemed acceptable and feasible, any further design planning must include considerations for sustainability and scalability.System strengthening is a key component of sustainability and scalability to ensure success in planning, implementation, monitoring and evaluation.

Empowering Caregivers of Children With Disabilities in Zambia: A Photovoice Study.

IMPORTANCE: Families with a child or children with a disability (CWD) living in low- and middle-income countries (LMICs) are a marginalized population experiencing multiple contextual factors within a social model of disability that contribute to decreased occupational participation. OBJECTIVE: To understand the advocacy messages that caregivers of CWD, living in an LMIC, wanted their community to learn about CWD. DESIGN: Photovoice methodology was used with 10 parents of a CWD. Photographs, accompanying narratives, and focus group session transcripts were analyzed using Wang and Burris's (1997) original Photovoice technique. SETTING: Urban subdistrict of Lusaka, Zambia. A community venue was used for the focus group, and the community photograph exhibition occurred in the subdistrict. PARTICIPANTS: Ten parents of a CWD living in an urban subdistrict of Zambia who were currently participating in a community-based program, Kusamala+, which addressed stigma in the community and supported parents of children with disabilities through training. RESULTS: Three themes were revealed: (1) "our children with disabilities should be shown love," (2) "our children with disabilities should be well taken care of," and (3) "our children with disabilities need help because they have different needs." CONCLUSIONS AND RELEVANCE: The findings indicate that a social disability model lens and participatory action research can be used to reveal occupational injustices that hinder parents' engagement in caregiving for their CWD in a marginalized community. Use of visual methodologies can be a powerful advocacy tool for marginalized populations. What This Article Adds: Our findings suggest that occupational therapists can better understand, and provide services to, families living in marginalized communities by using a social model of disability as a framework for evaluation and service provision. By highlighting issues of occupational injustice, occupational therapists can advocate for and empower communities of people with disabilities who face stigma and discrimination.

Using community-based interventions to reduce public stigma of children with disabilities: A feasibility study.

BACKGROUND: Public stigma, or negative community-held beliefs, about children with disabilities (CWDs) often leads to negative outcomes for CWD and their families. This study considers the effectiveness of four community-level interventions to reduce public stigma in two Lusaka, Zambia communities. METHODS: This feasibility study describes four community-based interventions to provide education to consider whether perceptions of attitudes and stigma towards CWD changed after implementing four educational interventions. RESULTS: Results revealed that these interventions were achievable. Preliminary multiple regression analyses indicated a significant impact of attending an event on the attitude scale, while no effect on the stigma scale. Presence at multiple anti-stigma events exhibited no effect for the stigma scale, while the attitude scale showed significance. DISCUSSION: This study builds on the limited research available in low-income countries to reduce public stigma towards CWD, with the hope of enhance quality of life for CWD and their families.

Caring for a child with a disability in a Zambian community: A study using photo-elicitation.

BACKGROUND: Over the past 25 years, caregivers of children with disabilities (CWD) in low- and middle-income countries (LMIC) have received limited attention from researchers. Previous research identified the physical, emotional, and social challenges of caregiving in resource-limited areas. Researchers also identified protective factors, such as problem-focused coping and emotion-focused coping. This study seeks to explore experiences of caregivers of CWD through participant-driven photo-elicitation, in a low-income subdistrict of Lusaka, Zambia. METHODS: Researchers considered the experiences of caregivers providing support to their children with disabilities (CWD). Ten parent participants completed this qualitative study using photo-elicitation. Parent participants completed an individual interview to describe their experiences reflected in the pictures they took. The research team used qualitative content analysis to identify the themes. RESULTS: Five general themes emerged from the data. The last two themes, "Also, a human being," and "The community should learn," are unique in research of CWD caregivers in LMIC settings. It indicates ways that these parents sought to encourage more inclusion and acceptance of their CWD in the community and to speak to other parents who might be struggling with providing care for their CWD. CONCLUSIONS: This study expanded disability research to include perspectives from a low-income area in Lusaka, Zambia. In doing so, we acquire a new viewpoint and enhanced understanding of their community experiences. Practice considerations include encouraging disability advocates to continue their work of educating the community about the inherent dignity and worth of people with disabilities and supporting CWD's rights.

Evaluating the cross-cultural validity of three family quality of life sub-scales.

BACKGROUND: Families of children with disabilities often face unique challenges. Developed in a U.S. context, the Beach Center Family Quality of Life measure assesses the effectiveness of supports and services that families receive. This study examines whether items from three sub-scales of the Beach Center instrument perform similarly for two samples, one from Lusaka, Zambia, and the second from a Midwestern U.S. state. METHODS: This cross-sectional research used secondary data and completed hierarchical ordinal regression analyses on item-level performance within the sub-scales. RESULTS: Only one item flagged for potential item bias with remaining items performing similarly when controlling for overall sub-scale scores. CONCLUSIONS: This study extends existing research on the cultural and linguistic appropriateness of the Beach Center measure, providing additional validity evidence about the internal structure of the scales. Findings indicate that these items are acceptable outcome measures for policy and programme evaluations in Zambia.

Direct support workforce supporting individuals with IDD: current wages, benefits, and stability.

Abstract Direct support professionals (DSPs) and frontline supervisors (FLSs) play an integral role in the lives of people with intellectual and developmental disabilities (IDD) and are often the individuals directly responsible for assisting people with IDD to live and fully participate in their communities. These two groups of workers have typically been employed at lower wages with limited access to fringe benefits, contributing to high rates of turnover compared to a similarly skilled worker in the United States. This article summarizes findings and is the first investigation in several years to systematically examine the wages, fringe benefits, and stability of the DSP and FLS workforces supporting individuals with IDD. Findings suggest that a typical DSP may expect to earn about $11.25 per hour, while FLSs may expect wages of about $15.45 hourly. Of concern, however, is that fringe benefit provision was quite limited in this sample. Implications, including relation to past reports of DSP workforce development, are discussed.