Supporting Parents in Caring for Children with Disability in Ghana

Joyce den Besten, Marije Tebogo Cornielje, Huib Cornielje, David Norden Botwey

Abstract


Purpose: This study assesses the factors that influence the wellbeing of caregivers and their children with a disability, in a rural and an urban site in Ghana. The wellbeing of parents, not surprisingly, influences the wellbeing of their children. A better understanding of the role and challenges faced by parents in caring for their child with a disability will help to improve existing services and support for children with disability.

Methods: Twenty-five parents of children with different disabilities participated in a PhotoVoice study. Photographs taken by parents, to show the challenges they experienced in childcare, were explained and discussed during focus group discussions. The Cantril Ladder was used to discuss subjective wellbeing.

Results: The photographs and discussions with parents indicated that the extensive time spent on their child, the child’s poor health status, and lack of educational opportunities had a negative influence on the wellbeing of both parent and child. Parents struggle to earn an income to provide for a child with disability. This often causes them to sink into (even deeper) poverty, and further increases the challenge to provide the (specific) care that a child with disability needs.

Conclusions and Implications: If governments, non-governmental organisations and community-based organisations want to contribute to the wellbeing of children with disability, they should be aware of the immediate context of the child, namely the family, and of the specific needs of the parents. Since the wellbeing of parents can affect the wellbeing of the child, and a child with disability may often cause further poverty in the family, relieving parents from some of the demands of childcare could help them to generate income, to the ultimate benefit of the entire family. Organisations working for children with a disability should actively involve parents of these children in designing and implementing interventions.

Keywords


Subjective wellbeing; photovoice; child health; childcare; upbringing; parenthood

Full Text:

PDF

References


Bailey DE, Landerman L, Barroso J, Bixby P, Mishel MH, Muir AJ, Strickland L, Clipp E (2009). Uncertainty, symptoms, and quality of life in persons with chronic hepatitis C. Psychosomatics, 50(2): 138-146.

http://dx.doi.org/10.1176/appi.psy.50.2.138. PMid:19377022. PMCid:PMC3525322

Braithwaite J, Mont D (2009). Disability and poverty: a survey of World Bank poverty assessments and implications. ALTER-European Journal of Disability Research, 3(3): 219-232. http://dx.doi.org/10.1016/j.alter.2008.10.002

Brehaut J, Kohen D, Raina P, Walter SD, Russell DJ, Swinton M, Rosenbaum P (2004). The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Paediatrics, 114(2): 182-191. http://dx.doi.org/10.1542/peds.114.2.e182

Cadman D, Rosenbaum P, Boyle M, Offord D (1991). Children with chronic illness: family and parent demographic characteristics and psychosocial adjustment. Paediatrics, 87(6): 884-889.

Cantril H (1965). Pattern of human concerns. New Brunswick, N.J.: Rutgers University Press.

Daly M, Bray R, Bruckauf Z, Byrne J, Margaria A, Pećnik N, Samms-Vaughan M (2015). Family and parenting support: policy and provision in a global context. UNICEF.

Dambi JM, Jelsma J, Mlambo T, Chiwaridzo M, Dangarembizi-Munambah N, Corten L (2016). An evaluation of psychometric properties of caregiver burden outcome measures used in caregivers of children with cerebral palsy: a systematic review protocol. Systematic Reviews, 5(1).

http://dx.doi.org/10.1186/s13643-016-0219-3. http://dx.doi.org/10.1186/s13643-016-0287-4. PMid:27412135. PMCid:PMC4944422

Davis K, Gavidia-Payne S (2009). The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual and Developmental Disability, 34(2): 153-162. http://dx.doi.org/10.1080/13668250902874608. PMid:19404836

Ghana Statistical Service (2012). 2010 Population & Housing Census. Summary report of final results (2010).

Guillamón N, Nieto R, Pousada M, Redolar D, Mu-oz E, Hernández E, Gómez‐Zú-iga B (2013). Quality of life and mental health among parents of children with cerebral palsy: the influence of self‐efficacy and coping strategies. Journal of clinical nursing: 22(11-12): 1579-1590. http://dx.doi.org/10.1111/jocn.12124. PMid:23461414

Helliwell JF, Barrington‐Leigh CP (2010). Viewpoint: measuring and understanding subjective well‐being. Canadian Journal of Economics/Revue Canadienne d'économique, 43(3): 729-753. http://dx.doi.org/10.1111/j.1540-5982.2010.01592.x

Helliwell JF, Layard R, Sachs J (2013). World happiness report: 1-170.

Kahneman D, Deaton A (2010). High income improves evaluation of life but not emotional well-being. Proceedings of the national academy of sciences, 107(38): 16489-16493. http://dx.doi.org/10.1073/pnas.1011492107. PMid:20823223. PMCid:PMC2944762

Kronenberger W, Thompson R (1992). Medical stress, appraised stress, and the psychological adjustment of mothers of children with myelomeningocele. Journal of Developmental & Behavioural Paediatrics, 13(6): 405-411. http://dx.doi.org/10.1097/00004703-199212000-00004. PMid:1469108

Lukemeyer A, Meyers M, Smeeding T (2000). Expensive children in poor families: out‐of‐pocket expenditures for the care of disabled and chronically ill children in welfare families. Journal of Marriage and Family, 62(2): 399-415. http://dx.doi.org/10.1111/j.1741-3737.2000.00399.x

Lund L (1997). Comprehensive community development and family support: an HFRP report highlights central themes and common ground. Harvard Family Research Project, 3(3, 4): 13-14.

Mobarak R, Khan N, Munir S, Zaman S, McConachie H (2000). Predictors of stress in mothers of children with cerebral palsy in Bangladesh. Journal of Paediatric Psychology, 25(6): 427-433. http://dx.doi.org/10.1093/jpepsy/25.6.427. PMid:10980047

Piškur B, Meuser S, Jongmans M, Ketelaar M, Smeets R, Casparie B, Beurskens A (2015). The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community. Disability and rehabilitation, 38(8): 1-10.

Plan International (2016). Available: https://plan-international.org/. Last accessed 2nd February 2016.

Regensteiner JG, Hiatt WR, Coll JR, Criqui MH, Treat-Jacobson D, McDermott MM, Hirsch AT (2008). The impact of peripheral arterial disease on health-related quality of life in the Peripheral Arterial Disease Awareness, Risk, and Treatment: New Resources for Survival (PARTNERS) Programme. Vascular Medicine, 13(1): 15-24. http://dx.doi.org/10.1177/1358863X07084911. PMid:18372434

Richman N, Stevenson J, Graham PJ (1982). Pre-school to school: a behavioural study. Behavioural Development: A Series of Monographs: 228.

Sameroff A, Fiese B (2000). Transactional regulation: the developmental ecology of early intervention. Handbook of early childhood intervention. New York: Cambridge University Press: 135-159. http://dx.doi.org/10.1017/CBO9780511529320.009

Save the Children (2016). Available: https://www.savethechildren.net/. Last accessed 2nd February 2016.

Trani JF, Loeb M (2012). Poverty and disability: A vicious circle? Evidence from Afghanistan and Zambia. Journal of International Development, 24(1): 19-52. http://dx.doi.org/10.1002/jid.1709

United Nations International Children's Emergency Fund - UNICEF (2016). Available: http://www.unicef.org/. Last accessed 2nd February 2016.

United Nations General Assembly (1989). Convention on the Rights of the Child. United Nations, Treaty Series, 1577(3).

Wallander JL, Varni JW (1998). Effects of paediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39(01): 29-46. http://dx.doi.org/10.1111/1469-7610.00302; http://dx.doi.org/10.1017/S0021963097001741; PMid:9534085

Zuurmond MA, Mahmud I, Polack S, Evans J (2015). Understanding the lives of parents of children with cerebral palsy in rural Bangladesh: use of mixed methods. Disability, CBR & Inclusive Development, 26(2): 5-21




DOI: http://dx.doi.org/10.5463/dcid.v27i3.530

Refbacks

  • There are currently no refbacks.




Copyright (c) 2016 Joyce den Besten, Marije Tebogo Cornielje, Huib Cornielje, David Norden Botwey

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Supported by:

netherlandsleprosyrelief_logo_rgb_-_new_logo_2014_120CBMlightfortheworld_logo_rgb_-_new_logo_2014_120

© Disability, CBR & Inclusive Development