‘There is family tension, but they understand…’: familial and sibling relationships following the diagnosis of cerebral palsy in children in Ghana

References

• Aboderin, I. 2004. Decline in material family support for older people in urban Ghana, Africa: Understanding processes and causes of change. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 59, 128–137.
   PubMed Web of Science ®Google Scholar
• Agyemang, F. O., Asamoah, P. K. B., and Obodai, J. 2018. Changing family systems in Ghana and its effects on access to urban rental housing: A study of the Offinso municipality. Journal of Housing and the Built Environment, 1–24.
   Web of Science ®Google Scholar
• Anthony, J. 2011. Conceptualising disability in Ghana: Implications for EFA and inclusive education. International Journal of Inclusive Education, 15, 1073–1086.
   Web of Science ®Google Scholar
• Avoke, M. 2002. Models of disability in the labeling and attitudinal discourse in Ghana. Disability and Society, 17, 769–777.
   Web of Science ®Google Scholar
• Babbie, E. 2011. The basics of social research. 5th ed. Belmont: Wadsworth.
   Google Scholar
• Baffoe, M. 2013. Stigma, discrimination and marginalization: Gateways to oppression of persons with disabilities in Ghana, West Africa. Journal of Educational and Social Research, 3, 187–198.
   Google Scholar
• Blacher, J. and Baker, B. L. 2007. Positive impact of intellectual disability on families. American Journal on Mental Retardation, 112, 330–348.
   PubMedGoogle Scholar
• Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S. D., Russell, D. J., Swinton, M., O'Donnell, M. and Rosenbaum, P. 2004. The health of primary caregivers of children with cerebral palsy: How does it compare with that of other Canadian caregivers? Pediatrics, 114, e182–e191.
   PubMed Web of Science ®Google Scholar
• Bulekbayeva, S., Daribayev, Z., Ospanova, S. and Vento, S. 2017. Cerebral palsy: A multidisciplinary, integrated approach is essential. The Lancet Global Health, 5, e401.
   PubMed Web of Science ®Google Scholar
• Button, S., Pianta, R. C. and Marvin, R. S. 2001. Partner support and maternal stress in families raising young children with cerebral palsy. Journal of Developmental and Physical Disabilities, 13, 61–81.
   Web of Science ®Google Scholar
• Cheshire, A., Barlow, J. H. and Powell, L. A. 2010. The psychosocial well-being of parents of children with cerebral palsy: A comparison study. Disability and Rehabilitation, 32, 1673–1677.
   PubMed Web of Science ®Google Scholar
• Clark, G. 1999. Negotiating Asante family survival in Kumasi, Ghana. Africa, 69, 66–86.
   Web of Science ®Google Scholar
• Craft, M. J., Lakin, J. A., Oppliger, R. A., Clancy, G. M. and Vanderlinden, D. W. 1990. Siblings as change agents for promoting the functional status of children with cerebral palsy. Developmental Medicine and Child Neurology, 32, 1049–1057.
   PubMed Web of Science ®Google Scholar
• Creswell, J.W. and Guetterman, T.C. 2015. Educational research: Planning, conducting and evaluating quantitative and qualitative research. 6^th ed. New York, NY: Pearson Education.
   Google Scholar
• Dallas, E., Stevenson, J. and McGurk, H. 1993. Cerebral‐palsied children’s interactions with siblings—II. Interactional structure. Journal of Child Psychology and Psychiatry, 34, 649–671.
   PubMed Web of Science ®Google Scholar
• Dan, B. and Paneth, N. 2017. Making sense of cerebral palsy prevalence in low-income countries. The Lancet Global Health, 5, e1174–e1175.
   PubMed Web of Science ®Google Scholar
• Davis, E., Shelly, A., Waters, E., Boyd, R., Cook, K. and Davern, M., 2010. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child: Care, Health and Development 36, 63–73.
   PubMed Web of Science ®Google Scholar
• Dew, A., Balandin, S. and Llewellyn, G. 2008. The psychosocial impact on siblings of people with lifelong physical disability: A review of the literature. Journal of Developmental and Physical Disabilities, 20, 485–507.
   Web of Science ®Google Scholar
• Dew, A., Llewellyn, G. and Balandin, S. 2014. Exploring the later life relationship between adults with cerebral palsy and their non-disabled siblings. Disability and Rehabilitation, 36, 756–764.
   PubMed Web of Science ®Google Scholar
• Eker, L. and Tüzün, E. H. 2004. An evaluation of quality of life of mothers of children with cerebral palsy. Disability and Rehabilitation, 26, 1354–1359.
   PubMed Web of Science ®Google Scholar
• Garip, Y., Ozel, S., Tuncer, O. B., Kilinc, G., Seckin, F. and Arasil, T. 2017. Fatigue in the mothers of children with cerebral palsy. Disability and Rehabilitation, 39, 757–762.
   PubMed Web of Science ®Google Scholar
• Glasscock, R. 2000. A phenomenological study of the experience of being a mother of a child with cerebral palsy. Pediatric Nursing, 26, 407.
   PubMedGoogle Scholar
• Green, S. E. 2007. “We’re tired, not sad”: Benefits and burdens of mothering a child with a disability. Social Science and Medicine, 64, 150–163.
   PubMed Web of Science ®Google Scholar
• Grossman, M. R. and Gruenewald, T. L. 2017. Caregiving and perceived generativity: A positive and protective aspect of providing care? Clinical gerontologist, 40, 435–447.
   PubMed Web of Science ®Google Scholar
• Harland, P. and Cuskelly, M. 2000. The responsibilities of adult siblings of adults with dual sensory impairments. International Journal of Disability, Development and Education, 47, 293–307.
   Google Scholar
• Hiebert-Murphy, D., Trute, B. and Wright, A. 2011. Parents' definition of effective child disability support services: implications for implementing family-centered practice. Journal of Family Social Work, 14, 144–158.
   Google Scholar
• Hoffnung, M., Hoffnung, R., Seifert K., Burton Smith, R., Hine A., Ward, L., Pause C. and Swabey, K. 2010. Lifespan development: A topical approach. Milton Qld: John Wiley and Sons.
   Google Scholar
• Hoffnung, M., Hoffnung, R., Seifert K., Hine A., Burton Smith, R., Hine, A., Ward, L. and Pause C. 2013. Lifespan development: A chronological approach. 2nd ed. Milton Qld: John Wiley and Sons.
   Google Scholar
• Hoffnung, M., Hoffnung, R., Seifert K., Hine A., Ward, L., Pause C., Swabey, K., Yates, K. and Burton Smith, R. 2016. Lifespan development. 3rd ed. Milton Qld: John Wiley and Sons.
   Google Scholar
• Huang, Y. P., Kellett, U. M. and St John, W. 2010. Cerebral palsy: Experiences of mothers after learning their child’s diagnosis. Journal of Advanced Nursing, 66, 1213–1221.
   PubMed Web of Science ®Google Scholar
• Huang, Y. P., Kellett, U. and St John, W. 2012. Being concerned: Caregiving for Taiwanese mothers of a child with cerebral palsy. Journal of Clinical Nursing, 21, 189–197.
   PubMed Web of Science ®Google Scholar
• Kassah, A. K., Kassah, B. L. L. and Agbota, T. K. 2012. Abuse of disabled children in Ghana. Disability and Society, 27, 689–701.
   Web of Science ®Google Scholar
• Kassah, B. L. L., Kassah, A. K. and Agbota, T. K. 2014. Abuse of physically disabled women in Ghana: Its emotional consequences and coping strategies. Disability and Rehabilitation, 36, 665–671.
   PubMed Web of Science ®Google Scholar
• Khayatzadeh, M. M., Rostami, H. R., Amirsalari, S. and Karimloo, M. 2013. Investigation of quality of life in mothers of children with cerebral palsy in Iran: Association with socio-economic status, marital satisfaction and fatigue. Disability and Rehabilitation, 35, 803–808.
   PubMed Web of Science ®Google Scholar
• Kimura, M., and Yamazaki, Y. 2016. Mental health and positive change among Japanese mothers of children with intellectual disabilities: Roles of sense of coherence and social capital. Research in Developmental Disabilities, 59, 43–54.
   PubMed Web of Science ®Google Scholar
• Koman, A., Smith, B. and Shilt, J. 2004. Cerebral palsy. The Lancet, 63, 1619–1931.
   Google Scholar
• Kpoor, A. 2015. The nuclearization of Ghanaian families. Current Politics and Economics of Africa, 8, 435.
   Google Scholar
• Kutsoati, E. and Morck, R. 2014. Family ties, inheritance rights, and successful poverty alleviation: Evidence from Ghana. Cambridge, MA: University of Chicago Press.
   Google Scholar
• Kuo, Y. C. and Geraci, L. M. 2012. Sister’s caregiving experience to a sibling with cerebral palsy – The impact to daughter-mother relationships. Sex Roles, 66, 544–557.
   Web of Science ®Google Scholar
• Kuo, Y. C. 2014. Brothers’ experiences caring for a sibling with Down syndrome. Qualitative Health Research, 24, 1102–1113.
   PubMed Web of Science ®Google Scholar
• Ludlow, A., Skelly, C., and Rohleder, P. 2012. Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, 17, 702–711.
   PubMed Web of Science ®Google Scholar
• Louis, P. T. and Kumar, N. 2016. Perceived parental differential treatment, cognition, behaviour and family cohesiveness among siblings of children with cerebral palsy? A family-mediated intervention to understand ‘displaced’ children. International Journal on Disability and Human Development, 15, 243–250.
   Google Scholar
• McAdams, R. M., and Juul, S. E. 2011. Cerebral palsy: Prevalence, predictability, and parental counselling. NeoReviews, 12, 564–679.
   Google Scholar
• Mophosho, M., Widdows, J. and Gomez, M. T. 2009. Relationships between adolescent children and their siblings with cerebral palsy: A pilot study. Journal on Developmental Disabilities, 15, 81–87.
   Google Scholar
• Myers, B. J., Mackintosh, V. H., and Goin-Kochel, R. P. 2009. “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684.
   Web of Science ®Google Scholar
• Naami, A., Hayashi, R. and Liese, H. 2012. The unemployment of women with physical disabilities in Ghana: Issues and recommendations. Disability and Society, 27, 191–204.
   Web of Science ®Google Scholar
• Naami, A. 2014. Breaking the barriers: Ghanaians’ perspectives about the social model. Disability, CBR and Inclusive Development, 25, 21–39.
   Google Scholar
• Navarausckas, H. D. B., Sampaio, I. B., Urbini, M. P., and Costa, R. C. V. 2010. " Hey, I´ m here too"!: The psychological aspects from the point of view of the siblings of a child with cerebral palsy in the family nucleus. Estudos de Psicologia (Campinas), 27, 505–513.
   Google Scholar
• Ofori-Dua, K. 2014. Extended family support and elderly care in Bamang, Ashanti region of Ghana. PhD. Department of Social Work University of Ghana.
   Google Scholar
• Omiya, T. and Yamazaki, Y. 2017. Positive change and sense of coherence in Japanese mothers of children with congenital appearance malformation. Health Psychology Open, 4, 2055102917729540.
   Web of Science ®Google Scholar
• Opoku, M. P., Badu, E., Amponteng, M. and Agyei-Okyere, E. 2015. Inclusive education at the crossroads in Ashanti and Brong Ahafo regions in Ghana: Target not achievable by 2015. Disability, CBR and Inclusive Development, 26, 63–78.
   Google Scholar
• Opoku, M. P., Alupo, B. A., Gyamfi, N., Odame, L., Mprah, W. K., Torgbenu, E. L. and Badu, E. 2017a. The family and disability in Ghana: Highlighting gaps in achieving social inclusion. Disability, CBR and Inclusive Development, 28, 41–59.
   Google Scholar
• Opoku, M. P., Gyamfi, N., Badu, E. and Mprah, W. K. 2017b. ‘They think we are all beggars’: The resilience of a person with disability in Ghana. Journal of Exceptional People, 2, 6–17.
   Google Scholar
• Opoku, M. P., J-F Swabey, K., Pullen, D. and Dowden, T. 2018. Assisting individuals with disabilities via the United Nations’ sustainable development goals: A case study in Ghana. Sustaining Development, 1–8.
   Google Scholar
• Oppong, C. 1977. A note from Ghana on chains of change in family systems and family size. Journal of Marriage and the Family, 615–621.
   Web of Science ®Google Scholar
• Pimm, P. L. 1996. Some of the implications of caring for a child or adult with cerebral palsy. British Journal of Occupational Therapy, 59, 335–341.
   Google Scholar
• Polack, S., Adams, M., O'banion, D., Baltussen, M., Asante, S., Kerac, M. and Zuurmond, M. (2018). Children with cerebral palsy in Ghana: Malnutrition, feeding challenges, and caregiver quality of life. Developmental Medicine and Child Neurology, 60, 914–921.
   PubMed Web of Science ®Google Scholar
• Rajan, A. M. and John, R. 2017. Resilience and impact of children’s intellectual disability on Indian parents. Journal of Intellectual Disabilities, 21, 315–324.
   PubMed Web of Science ®Google Scholar
• Rentinck, I. C. M., Ketelaar, M., Jongmans, M. J. and Gorter, J. W. 2006. Parents of children with cerebral palsy: A review of factors related to the process of adaptation. Child: Care, Health and Development, 33, 161–169.
   Web of Science ®Google Scholar
• Ross, P. and Cuskelly, M. 2006. Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Journal of Intellectual and Developmental Disability, 31, 77–86.
   PubMed Web of Science ®Google Scholar
• Senayah, A. E., Mprah, W. K., Opoku, M. P., Edusei, A. K. and Torgbenu, E. L. 2018. The accessibility of health services to young deaf adolescents in Ghana. International Journal of Health Planning Management, 1–12.
   Google Scholar
• Tseng, M. H., Chen, K. L., Shieh, J. Y., Lu, L., Huang, C. Y. and Simeonsson, R. J. 2016. Child characteristics, caregiver characteristics, and environmental factors affecting the quality of life of caregivers of children with cerebral palsy. Disability and Rehabilitation, 38, 2374–2382.
   PubMed Web of Science ®Google Scholar
• United Nations. 2006. Convention on the rights of persons with disabilities and optional protocol. New York: Author.
   Google Scholar
• White F., Hayes, B. and Livesey, D. 2016. Developmental psychology: From infancy to adulthood. 4th ed. Melbourne: Pearson Australia.
   Google Scholar
• Whittingham, K., Wee, D., Sanders, M., and Boyd, R. 2011. Responding to the challenges of parenting a child with cerebral palsy: A focus group. Disability and Rehabilitation, 33, 1557–1567.
   PubMed Web of Science ®Google Scholar
• Zuurmond, M., O’Banion, D., Gladstone, M., Carsamar, S., Kerac, M., Baltussen, M. and Polack, S. 2018. Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana. PloS one, 13, 1–17.
   Web of Science ®Google Scholar
• Zuurmond, M., Nyante, G., Baltussen, M., Seeley, J., Abanga, J., Shakespeare, T., Collumbien, M. and Bernays, S. (2019). A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers. Child: Care, Health and Development, 45, 45–53.
   PubMed Web of Science ®Google Scholar