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Disabilities
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Supporting Family Carers of Persons with Disability in Low- and...
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Supporting Family Carers of Persons with Disability in Low- and Middle-Income Countries: Progress and Pitfalls

A special issue of Disabilities (ISSN 2673-7272).

Deadline for manuscript submissions: closed (30 June 2022) | Viewed by 21290

Special Issue Editors

Prof. Dr. Roy McConkey

E-Mail Website1 Website2
Guest Editor
Institute of Nursing and Health Research, University of Ulster, Newtownabbey BT37 0QB, UK
Interests: intellectual and developmental disabilities; family; community based supports; innovative services; social inclusion; public attitudes
Special Issues, Collections and Topics in MDPI journals
Dr. Judith McKenzie

E-Mail Website
Guest Editor
Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
Interests: social inclusion of people with intellectual disabilities; inclusive education; education for children with profound intellectual and multiple disabilities; disability theory in Africa

Special Issue Information

Dear Colleagues,

The majority of the world’s population of people with disabilities live in low- and middle-income (LMI) countries. Moreover, many are dependent on family carers for life-long support. However, most research on the needs of family carers has been undertaken in more affluent countries. These insights may have limited application to nations with different cultures and social structures, high levels of poverty and a dearth of professional services.

This Special Issue aims to compile studies into family caregiving in low-resource countries around the world. Particular attention will be given to papers that describe innovative supports provided to family carers and evidence of their impact on carers, families and their relatives with disabilities. Submissions are welcome for all impairment conditions, different personnel who provide family caregiving beyond mothers and rural and urban settings. Systematic reviews of past research on family carers in LMI countries, as well as papers that analyse policy implementation and conceptual frameworks to guide family-based interventions, will also be considered. The aim of this Special Issue is to provide examples of good practice that are viable for adoption in LMI countries while cautioning about pitfalls that are likely to be encountered.

Prof. Dr. Roy McConkey
Dr. Judith McKenzie
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Disabilities is an international peer-reviewed open access quarterly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 1000 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • family carers
  • disability
  • impairment
  • low- and middle-income countries
  • rehabilitation
  • rural
  • home-based interventions

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Published Papers (5 papers)

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Research

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13 pages, 250 KiB  
Article
I Be Africa Man Original: Towards a Contextual Conceptualization of Father Involvement in the Education of Children with Disabilities in Kenya
by Amani Karisa and Judith McKenzie
Disabilities 2022, 2(1), 28-40; https://doi.org/10.3390/disabilities2010003 - 10 Jan 2022
Cited by 3 | Viewed by 2882
Abstract
Father involvement could play a significant role in the lives of children with disabilities. Research is scarce on father involvement in the education of children with disabilities in Africa. We seek to provide a context for father involvement in the formal education of [...] Read more.
Father involvement could play a significant role in the lives of children with disabilities. Research is scarce on father involvement in the education of children with disabilities in Africa. We seek to provide a context for father involvement in the formal education of children with disabilities in Kenya, with the aim of contributing to the development of a conceptual understanding for father involvement in such a circumstance. We examine general research on father involvement in Kenya, explore the policy frameworks that guide fatherhood in the country, and look at the specific area of involvement in education. We then present a case study that examines father involvement in the formal education of children with disabilities in Kenya. Our analysis flags up a key opportunity in the pursuit of education for children with disabilities when fathers are involved; they can support their children with disabilities’ access, participation and success in education. We highlight the need for research that builds upon the voices of fathers to illuminate their role in education and we also make some suggestions toward a conceptual lens that will highlight the contextual realities involved, particularly in regard to the education of children with disabilities. Full article
(This article belongs to the Special Issue Supporting Family Carers of Persons with Disability in Low- and Middle-Income Countries: Progress and Pitfalls)
24 pages, 701 KiB  
Article
Family Quality of Life and Support: Perceptions of Family Members of Children with Disabilities in Ethiopia
by Julia Jansen-van Vuuren, Rosemary Lysaght, Beata Batorowicz, Solomon Dawud and Heather Michelle Aldersey
Disabilities 2021, 1(3), 233-256; https://doi.org/10.3390/disabilities1030018 - 21 Aug 2021
Cited by 6 | Viewed by 5817
Abstract
There has been increasing attention to quality of life for families supporting children with disabilities internationally; however, there is minimal research on family quality of life (FQOL) in low-income countries, and specifically in African contexts. This study explored how Ethiopian families of children [...] Read more.
There has been increasing attention to quality of life for families supporting children with disabilities internationally; however, there is minimal research on family quality of life (FQOL) in low-income countries, and specifically in African contexts. This study explored how Ethiopian families of children with disabilities conceptualised FQOL and what they perceived their support needs related to FQOL were. Using a qualitative exploratory descriptive design, we interviewed Ethiopian family members of children with various disabilities. Audio-recorded interviews were transcribed verbatim and translated into English with professional translation assistance. We analysed translated transcripts inductively based on Braun and Clarke’s approach to thematic analysis. We found that spirituality was core to families and that they described FQOL in terms of their relationships within the immediate family and with the community. Additionally, families wanted to be self-sufficient and provide for themselves, but with the additional challenges of raising a child with a disability and pervasive poverty, they recognised their need for more support. Therefore, providing holistic, family-centred services to Ethiopian families of children with disabilities can contribute to enhancing FQOL. Full article
(This article belongs to the Special Issue Supporting Family Carers of Persons with Disability in Low- and Middle-Income Countries: Progress and Pitfalls)
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13 pages, 248 KiB  
Article
The Circumstances of Children with and without Disabilities or Significant Cognitive Delay Living in Ordinary Households in 30 Middle- and Low-Income Countries
by Eric Emerson and Gwynnyth Llewellyn
Disabilities 2021, 1(3), 174-186; https://doi.org/10.3390/disabilities1030014 - 19 Jul 2021
Cited by 5 | Viewed by 3478
Abstract
Home-based early intervention is a key component of strategic approaches to preventing the loss of developmental potential among young children in middle- and low-income countries. We undertook secondary analysis of nationally representative data collected in 30 middle- and low-income countries during Round 6 [...] Read more.
Home-based early intervention is a key component of strategic approaches to preventing the loss of developmental potential among young children in middle- and low-income countries. We undertook secondary analysis of nationally representative data collected in 30 middle- and low-income countries during Round 6 (2017-) of UNICEF’s Multiple Indicator Cluster Surveys. Our analyses, involving over 100,000 children with/without disabilities or significant cognitive delay, indicated that children with disabilities and/or significant cognitive delay were more likely than their peers to: be living in relative household poverty and in rural areas; have a mother with only primary level education; live in households where intimate partner violence was considered acceptable by the child’s mother; be less likely to be receiving any pre-school education; have a mother with disabilities; receive low levels of parental stimulation; be exposed to violent parental discipline. For many of these indicators of poorer home circumstances, the level of risk was notably higher for children with significant cognitive delay than for children with disabilities. Our study findings suggest the need to consider tailored, evidence-based approaches to reduce and (potentially) overcome the increased risks that young children with disabilities and young children with significant cognitive delay experience in middle- and low-income countries. Full article
(This article belongs to the Special Issue Supporting Family Carers of Persons with Disability in Low- and Middle-Income Countries: Progress and Pitfalls)
11 pages, 357 KiB  
Article
The Role of the Family Network When Raising a Child with a Disability in Low- and Middle-Income Countries
by Andrea Bizzego, Mengyu Lim, Dagmara Dimitriou and Gianluca Esposito
Disabilities 2021, 1(1), 58-68; https://doi.org/10.3390/disabilities1010005 - 19 Mar 2021
Cited by 4 | Viewed by 4406
Abstract
Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving [...] Read more.
Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving of children with disabilities is still unknown. In this study, we use data from N = 22,405 children with severe (N = 876) and mild or no disability (N = 21,529) from a large dataset collected in the 2005–2007 Multiple Indicator Cluster Survey. In particular, we adopt PageRank, a well-known algorithm used by search engines, to quantify the importance of each child in the family network. We then analyze the level of caregiving the child received in light of the child’s importance and developmental status, using a generalized linear model. Results show a main effect of child’s importance and of the interaction of child’s importance and developmental status. Post hoc analysis reveals that higher child importance is associated with a better caregiving outcome only for children with mild or no disability. Full article
(This article belongs to the Special Issue Supporting Family Carers of Persons with Disability in Low- and Middle-Income Countries: Progress and Pitfalls)
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Review

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16 pages, 1307 KiB  
Review
Parental Participation in Intellectual and Developmental Disability Research: A Review of Diversity
by Lauren Grove, Yingying Yang, Dai’jah Diggs and Arielle Hershkovich
Disabilities 2022, 2(2), 219-234; https://doi.org/10.3390/disabilities2020016 - 18 Apr 2022
Cited by 2 | Viewed by 2814
Abstract
Parents provide important insights into the psychology, behaviors, and activities of themselves and their children with intellectual and developmental disabilities (IDD). However, it is unknown how prevalent parental participation in IDD research is in general, nor the diversity of geographical locations and research [...] Read more.
Parents provide important insights into the psychology, behaviors, and activities of themselves and their children with intellectual and developmental disabilities (IDD). However, it is unknown how prevalent parental participation in IDD research is in general, nor the diversity of geographical locations and research methods of these studies with parental participation. The current review screened 7845 published works in 7 IDD-focused journals between 2010 and 2019. A total of 1519 articles, accounting for 19.37% of all screened works, included at least one parental measure. For each parental article, we coded the country/continent of authors/participants, measurement tools used to obtain data from parents (e.g., questionnaire, interview), and the focus of the measurement (i.e., about parents, child, or both). We found an increasing number and proportion of studies involving parents between 2010 and 2019. Most studies (76%) came from North America and Europe, whereas other continents such as Africa and South America represented less than 1% of all studies reviewed. The predominant (88.0%) measurement tools were questionnaires and interviews. More studies were about both the children and the parents (42.6%) than either only the children (31.3%) or only the parents (26.1%). Together, our review showed a somewhat limited diversity in parental participation in IDD research and these findings have important implications for future research. Full article
(This article belongs to the Special Issue Supporting Family Carers of Persons with Disability in Low- and Middle-Income Countries: Progress and Pitfalls)
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