A web of gaps: a discussion of research strands concerning Global South families with a disabled child

Figures & data

Table A1. Summary of publications reviewed.

Reference		Quality
Culture
1	Powell SE, Bauer JW. Resource use of rural low-income families caring for children with disabilities. J Child Poverty. 2010;16(1):67–83.	n = 26 families qualitative and quantitative overall quality rating^a 3
2	Rao S. ‘A little inconvenience’: perspectives of Bengali families of children with disabilities on labelling and inclusion. Disabil Soc. 2001;16(4):531–548.	n = 8 qualitative and observational overall quality rating^a 3
3	Yousafzai AK, Farrukh Z, Khan K. A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi, Pakistan. Disabil Rehabil. 2011;33(12):989–998.	n = 18 qualitative overall quality rating^a 2
4	Cohen SR. Advocacy for the ‘Abandonados’: harnessing cultural beliefs for Latino families and their children with intellectual disabilities. J Policy Pract Intellect Disabil. 2013;10(1):71–78.	theoretical/discussion paper
5	Harry B. Collaboration with culturally and linguistically diverse families: Ideal versus reality. Except Child. 2008;74(3):372–388.	theoretical/discussion paper
6	Xu Y. Empowering culturally diverse families of young children with disabilities: The double ABCX model. Early Child Educ J. 2007;34(6):431–437.	theoretical/discussion paper
7	Foley D, Chowdhury J. Poverty, social exclusion and the politics of disability: Care as a social good and the expenditure of social capital in Chuadanga, Bangladesh. Soc Policy Adm. 2007;41(4):372–385.	n = 10 qualitative overall quality rating^a 2
8	Porterfield SL, McBride TD. The effect of poverty and caregiver education on perceived need and access to health services among children with special health care needs. Am J Public Health. 2007;97(2):323–329.	n = 38 866 quantitative overall quality rating^a 3
9	Fellin M, Desmarais C, Lindsay, S. An examination of clinicians’ experiences of collaborative culturally competent service delivery to immigrant families raising a child with a physical disability. Disabil Rehabil. 2015;37(21):1961–1969.	n = 43 qualitative overall quality rating^a 3
10	Gona JK, Newton CR, Hartley S, et al. A home-based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the caregivers’ experiences? Child Care Health Dev. 2014;40(1):29–41.	n = 9 quantitative overall quality rating^a 2
11	Danseco ER. Parental beliefs on childhood disability: Insights on culture, child development and intervention. Intl J Disabil Dev Educ. 1997;44(1):41–52.	theoretical/discussion paper
12	Harry B. Making sense of disability: Low-income, Puerto Rican parents’ theories of the problem. Except Child. 1992;59(1):27–40.	n = 12 qualitative overall quality rating^a 3
13	Maloni PK, Despres ER, Habbous J, et al. Perceptions of disability among mothers of children with disability in Bangladesh: Implications for rehabilitation service delivery. Disabil Rehabil. 2010;32(10):845–854.	n = 11 qualitative overall quality rating^a 3
14	Mutua NK, Miller JW, Mwavita M. Resource utilization by children with developmental disabilities in Kenya: discrepancy analysis of parents’ expectation-to-importance appraisals. Res Dev Disabil. 2002;23(3):191–201.	n = 351 quantitative overall quality rating^a 3
15	Pan L, Ye J. Family care of people with intellectual disability in rural China: A magnified responsibility. J Appl Res Intellect Disabil. 2015;28(4):352–366.	n = 2 qualitative overall quality rating^a 1
16	Ravindran N, Myers BJ. Cultural influences on perceptions of health, illness, and disability: A review and focus on autism. J Child Fam Stud. 2012;21(2):311–319.	Review
17	Harry B. Trends and issues in serving culturally diverse families of children with disabilities. J Spec Educ. 2002;36(3):132–140.	theoretical/discussion paper
18	Njelesani J, Leckie K, Drummond J, et al. Parental perceptions of barriers to physical activity in children with developmental disabilities living in Trinidad and Tobago. Disabil Rehabil. 2015;37(4):290–295.	n = 9 qualitative overall quality rating^a 2
19	Rueda R, Monzo L, Shapiro J, et al. Cultural models of transition: Latina mothers of young adults with developmental disabilities. Except Child. 2005;71(4):401–414.	n = 16 qualitative overall quality rating^a 3
20	Blacher J, McIntyre LL. Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. J Intellect Disabil Res. 2006;50(3):184–198.	n = 282 quantitative overall quality rating^a 3
21	Skinner D, Rodriguez P, Bailey DB Jr. Qualitative analysis of Latino parents’ religious interpretations of their child’s disability. J Early Interv. 1999;22(4):271–285.	n = 250 qualitative overall quality rating^a 2
22	Raghavan R, Pawson N, Small N. Family carers’ perspectives on post-school transition of young people with intellectual disabilities with special reference to ethnicity. J Intellect Disabil Res. 2013;57(10):936–946.	n = 43 qualitative overall quality rating^a 3
23	Cohen SR, Holloway SD, Domínguez-Pareto I, et al. Receiving or believing in family support? Contributors to the life quality of Latino and non-Latino families of children with intellectual disability. J Intellect Disabil Res. 2014;58(4):333–345.	n = 145 quantitative overall quality rating^a 2
Interventions
1	Patel S, Alavi Y, Lindfield R, et al. The impact of rehabilitative services in the lives of adults and children with disabilities, in low-income and middle-income countries: an assessment of the quality of the evidence. Disabil Rehabil. 2013;35(9):703–712.	Review
2	Medeiros M, Diniz D, Squinca F. Cash benefits to disabled persons in Brazil: an analysis of BPC-continuous cash benefit programme. Textos para Discussão (IPEA). 2015;1184.	theoretical/discussion paper
3	Einfeld SL, Stancliffe RJ, Gray KM, et al. Interventions provided by parents for children with intellectual disabilities in low and middle income countries. J Appl Res Intellect Disabil. 2012;25(2):135–142.	Review
4	Narayanan HS, Girimaji SR, Gandhi DH, et al. Brief in-patient family intervention in mental retardation. Indian J Psychiatry. 1988;30(3):275.	n = 106 quantitative overall quality rating^a 3
5	McConachie H, Huq S, Munir S, et al. Difficulties for mothers in using an early intervention service for children with cerebral palsy in Bangladesh. Child Care Health Dev. 2001;27(1):1–12.	n = 47 quantitative overall quality rating^a 3
6	McConkey R, Mariga L, Braadland N, et al. Parents as trainers about disability in low income countries. Intl J Disabil Dev Educ. 2000;47(3):309–317.	n = 21 qualitative overall quality rating^a 2
7	Russell PS, al John JK, Lakshmanan JL. Family intervention for intellectually disabled children. Randomised controlled trial. Br J Psychiatry. 1999;174(3):254–258.	n = 57 quantitative overall quality rating^a 3
8	Mitra S. Disability and social safety nets in developing countries; 2005. Available at http://documents.worldbank.org/curated/en/443641468140637787/pdf/327400rev.pdf	theoretical/discussion paper
Family quality of life (FQOL)
1	Park J, Turnbull AP, Turnbull HR III. Impacts of poverty on quality of life in families of children with disabilities. Except Child. 2002;68(2):151–170.	Review
2	Meral BF, Cavkaytar A, Turnbull AP, et al. Family quality of life of Turkish families who have children with intellectual disabilities and autism. Res Pract Persons Severe Disabil. 2013;38(4):233–246.	n = 3009 quantitative overall quality rating^a 3
3	Giné C, Gràcia M, Vilaseca R, et al. Family quality of life for people with intellectual disabilities in Catalonia. J Policy Pract Intellect Disabil. 2015;12(4):244–254.	n = 144 quantitative overall quality rating^a 3
4	Wang M, Turnbull AP, Summers JA, et al. Severity of disability and income as predictors of parents’ satisfaction with their family quality of life during early childhood years. Res Pract Persons Severe Disabil. 2004;29(2):82–94.	n = 364 quantitative overall quality rating^a 2
5	Werner S, Edwards M, Baum N, et al. Family quality of life among families with a member who has an intellectual disability: an exploratory examination of key domains and dimensions of the revised FQOL Survey. J Intellect Disabil Res. 2009;53(6):501–511.	n = 35 quantitative overall quality rating^a 2
6	Gardiner EC. Quality of life in families of children with autism spectrum disorder: considerations of risk and resilience [doctoral dissertation: Arts & Social Sciences]; 2014.	n = 84 quantitative and qualitative overall quality rating^a 3
7	Yagmurlu B, Yavuz HM, Sen H. Well-being of mothers of children with orthopedic disabilities in a disadvantaged context: findings from Turkey. J Child Fam Stud. 2015;24(4):948–956.	n = 105 quantitative overall quality rating^a 3
8	Schertz M, Karni-Visel Y, Tamir A, et al. Family quality of life among families with a child who has a severe neurodevelopmental disability: Impact of family and child socio-demographic factors. Res Dev Disabil. 2016;53:95–106.	n = 70 quantitative overall quality rating^a 3
9	Dardas LA, Ahmad MM. Quality of life among parents of children with autistic disorder: A sample from the Arab world. Res Dev Disabil. 2014;35(2):278–287.	n = 184 quantitative overall quality rating^a 2
10	Aldersey HM, Francis GL, Haines SJ, et al. Family quality of life in the Democratic Republic of the Congo. J Policy Pract Intellect Disabil. 2017;14(1):78–86.	n = 21 qualitative overall quality rating^a 2

^aThe quality assessment ranks each paper out of 3 according to: (1) clarity of explanation of methods/replicability; (2) sample size; and (3) depth of analysis/discussion.