Publications by authors named "Paula Rabaey"

3 Publications

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

Child Care Health Dev 2021 Jan 20. Epub 2021 Jan 20.

Occupational Therapy Program, St. Catherine University, St. Paul, Minnesota, USA.

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.
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January 2021

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

Disabil Rehabil 2020 Oct 14:1-10. Epub 2020 Oct 14.

Occupational Therapy, Henrietta Schmoll School of Health, St. Catherine University, Saint Paul, MN, USA.

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 rehabilitation Children 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.
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October 2020

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

J Appl Res Intellect Disabil 2020 Sep 24;33(5):1049-1058. Epub 2020 Mar 24.

Public Health Department, St. Catherine University, Saint Paul, MN, USA.

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.
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September 2020