| 1. |
- Dada, Shakila, et al.
(författare)
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The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials
- 2022
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Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 1004-1015
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects.Method: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities.Results: Six youth aged 19–34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum.Conclusion: The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID-19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision-makers and partners.Patient or Public Contribution: This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.
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| 2. |
- Kyarkanaye, Thilendree, et al.
(författare)
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Collaboration in early childhood intervention services in Gauteng : caregiver perspectives
- 2017
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Ingår i: Infants and young children. - : Lippincott Williams & Wilkins. - 0896-3746 .- 1550-5081. ; 30:3, s. 238-254
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Tidskriftsartikel (refereegranskat)abstract
- A central tenant of early childhood intervention (ECI) is collaboration between professionals and the caregivers of children receiving these services. There are limited studies on caregiver perceptions of collaboration in ECI teams particularly in resource-limited countries. Sixty-four caregivers participated in this study by completing a questionnaire on their perceptions of collaboration in ECI services in South Africa. The questionnaire survey was administered in a group setting by a trained research assistant who was proficient in the Setswana language. The results revealed that caregivers have a good understanding of collaboration in ECI services. However, collaboration, in relation to family-centered practices, appeared to be undervalued by caregivers. These results are discussed and the limitations of the study as well as future recommendations are outlined.
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| 3. |
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| 4. |
- Schlebusch, Liezl, et al.
(författare)
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Family Quality of Life of South African Families Raising Children with Autism Spectrum Disorder
- 2017
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Ingår i: Journal of autism and developmental disorders. - : Springer. - 0162-3257 .- 1573-3432. ; 47:7, s. 1966-1977
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
- Schlebusch, Liezl, et al.
(författare)
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Participation of young people with disabilities and/or chronic conditions in low- and middle-income countries : a scoping review
- 2020
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Ingår i: Developmental Medicine & Child Neurology. - : John Wiley & Sons. - 0012-1622 .- 1469-8749. ; 62:11, s. 1259-1265
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Forskningsöversikt (refereegranskat)abstract
- AimThe 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.ResultsThe 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’.InterpretationAlthough 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.
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| 6. |
- Schlebusch, L., et al.
(författare)
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South African families raising children with autism spectrum disorders : relationship between family routines, cognitive appraisal and family quality of life
- 2016
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 60:5, s. 412-423
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The purpose of this study was to investigate the relationship between family routines, cognitive appraisal of the impact of autism spectrum disorders (ASD) on the family and family quality of life (FQOL) in families raising children with ASD in South Africa.METHODS: A sample of 180 families of young children with ASD who were receiving disability-related services in the Gauteng province of South Africa completed a self-administered survey. Structural equation modelling was used to examine the direct relationship between the regularity of family routines and FQOL, and the mediating effect of cognitive appraisal on this relationship.RESULTS: The results suggested a direct, positive relationship between the regularity of family routines and families' satisfaction with their FQOL. Furthermore, cognitive appraisal of the impact of ASD on the family mediated this relationship in a partial manner.CONCLUSION: A higher frequency of regular family routines was strongly associated with a higher satisfaction level of FQOL. Also, cognitive appraisal of the impact of ASD acted as a mechanism through which the regularity of family routines influenced FQOL. We discuss the research and clinical implications of these findings.
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