Hostname: page-component-78c5997874-m6dg7 Total loading time: 0 Render date: 2024-11-17T17:23:08.074Z Has data issue: false hasContentIssue false
  • English
  • Français

Working Therapeutically with Parents after the Diagnosis of a Child's Cerebral Palsy: Issues and Practice Guidelines

Published online by Cambridge University Press:  10 June 2014

Jodi Higginson  and
Mandy Matthewson
Jodi Higginson
Affiliation:
School of Psychology, University of Tasmania, Hobart, Australia
Mandy Matthewson*
Affiliation:
School of Psychology, University of Tasmania, Hobart, Australia
*
Address correspondence to: Dr Mandy Matthewson, Lecturer, School of Psychology, University of Tasmania, Private Bag 30, Hobart, Tasmania, Australia, 7001. Email: [email protected]
Get access

Abstract

Little is known about the effectiveness of psychoeducational support groups on positive adaptation in parents and families after a child has been diagnosed with cerebral palsy. A systematic literature review adopting the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines was conducted to gain an understanding of the process of adaptation in parents with a child with cerebral palsy and the effects psychoeducational support programs have on this process. The databases searched were psychINFO, Taylor and Francis Online, PsychARTICLES, Medline and ProQuest. A total of 1083 papers were found and 19 of those papers were analysed. A narrative approach was used to synthesise the data extracted. A number of factors that influence adaption within a family after the diagnosis of cerebral palsy in a family member were identified in the review. These factors include, but are not limited to, providing appropriate and relevant information to parents and families, identifying community services and resources available to the family, assisting in the reduction of psychosocial distress, and encouraging the facilitation and collaboration of a strong parent-professional partnership throughout the process. Based on this information guidelines for psychoeducation programs for this client group were proposed.

Keywords

cerebral palsydiagnosisdisabilitypsychoeducationadaptationparentfamily functioninginterventionpsychosocial distressfamily
Type
Review Article
Information
The Australian Journal of Rehabilitation Counselling , Volume 20 , Issue 1 , July 2014 , pp. 50 - 66
Copyright
Copyright © The Author(s), published by Cambridge University Press on behalf of Australian Academic Press Pty Ltd 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Almassri, N., Palisano, R.J., Dunst, C., Chiarello, L.A., O’Neil, M.E., & Polansky, M. (2011). Profiles of family needs of children and youth with cerebral palsy. Child: Care, Health and Development. 38 (6), 798–806. doi: 10.1111/j.1365-2214.2011.01331.xCrossRefGoogle Scholar
Baine, S., Rosenbaum, P., & King, S. (1995). Chronic childhood illnesses: What aspects of caregiving do parents value? Child: Care, Health and Development. 21 (5), 291–304. doi: 10.1111/j.1365-2214.1995.tb00759.xCrossRefGoogle ScholarPubMed
Bourke-Taylor, H., Cotter, C., & Stephan, R. (2013). Young children with cerebral palsy: Families self-reported equipment needs and out-of-pocket expenditure. Child: Care, Health and Development. 39 (6), 1–9. doi: 10.1111/cch.12098Google Scholar
Buran, C.F., Sawin, K., Grayson, P., & Criss, S. (2009). Family needs assessment in cerebral palsy clinic. Journal for Specialists in Pediatric Nursing. 14 (2), 86–93. doi: 10.1111/j.1744-6155.2008.00176.xGoogle Scholar
Chen, W-Y., & Lukens, E. (2011). Well being, depressive symptoms, and burden among parent and sibling caregivers of persons with severe and persistent mental illness. Social Work in Mental Health, 9 (6), 397–416. doi:10.1080/15332985.2011.575712.Google Scholar
Davis, E., Shelly, A., Waters, E., Boyd, R., Cook, K., & Davern, M. (2009). The impact of caring for a child with cerebral palsy: Quality of life for mothers and fathers. Child: Care, Health and Development. 36 (1), 63–73. doi: 10.1111/j.1365-2214.2009.00989.xCrossRefGoogle ScholarPubMed
Davis, E., Mackinnon, A., & Waters, E. (2011). Parent proxy-reported quality of life for children with cerebral palsy: is it related to parental psychosocial distress? Child: Care, Health and Development. 38 (4), 553–560. doi: 10.1111/j.1365-2214.2011.01267.xCrossRefGoogle ScholarPubMed
Dixon, L., Adams, C., & Lucksted, A. (2000). Update on family psychoeducation for schizophrenia. Schizophrenia Bulletin. 26 (1), 5–20. doi: 2000-08139-001Google Scholar
Fiss, A.L., Chiarello, L.A., Bartlett, D., Palisano, R.J., Jeffries, L., Almassri, N., & Chang, H-J. (2013). Family ecology of young children with cerebral palsy. Child: Care, Health and Development. 39 (6), 1–10. doi: 10.1111/cch.12062Google Scholar
Fleiss, B., & Gressens, P. (2012). Tertiary mechanisms of brain damage: A new hope for treatment of cerebral palsy? The Lancet Neurology. 11 (6), 556–566. doi: 10.1016/S1474-4422(12)70058-3CrossRefGoogle ScholarPubMed
Hirose, T., & Ueda, R. (1990). Long-term follow-up study of cerebral palsy children and coping behaviour of parents. Journal of Advanced Nursing. 15, 762–770. doi: 10.1111/j.1365-2648.1990.tb.01904.xGoogle Scholar
Jackson, R., Baird, W., Davis-Reynolds, L., Smith, C., Blackburn, S., & Allsebrook, J. (2007). Qualitative analysis of parents’ information needs and psychosocial experiences when supporting children with health care needs. Health Information and Libraries Journal. 25, 31–37. doi: 10.1111/j.1471-1842.2007.00736.xGoogle Scholar
Kruijsen-Terpstra, A.J.A., Ketelaar, M., Boeije, H., Jongmans, M.J., Gorter, J.W., Verheijden, J., Lindeman, E., & Verschuren, O. (2013). Parents’ experiences with physical and occupational therapy for their young child with cerebral palsy: A mixed studies review. Child: Care, Health and Development. 39 (6), 1–10. doi: 10.1111/cch.12097Google Scholar
Law, M., Hanna, S., King, G., Hurley, P., King, S., Kertoy, M., & Rosenbaum, P. (2003). Factors affecting family-centred service delivery for children with disabilities. Child: Care, Health and Development, 29 (5), 357–366. doi:10.1046/j.1365-2214.2003.00351.xGoogle Scholar
Lundwall, R.A. (1996). How psychoeducational support groups can provide multidiscipline services to families of people with mental health. Psychiatric Rehabilitation Journal. 20 (2)64–71. doi: 10.1037/h0095382Google Scholar
Majnemer, A., Shevell, M., Law, M., Poulin, C., Rosenbaum, P. (2008). Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Quality of Life Research, 17 (9), 163–171. doi: 10.1007/s11136-008-9394-6CrossRefGoogle ScholarPubMed
McCulloch, K., & Simon, S.R. (2011). Feeling heard: A support group for siblings of children with developmental disabilities. Social Work With Groups, 34 (3–4), 320–329. doi:10.1080/01609513.2011.558819.Google Scholar
Miller, J., Colligan, J., & Colver, A. (2003). A qualitative study, using focused interviews, of the information needs of families whose children's names are on a cerebral palsy register. Child: Care, Health and Development, 29 (6), 465–471. doi: 10.1046/j.1365-2214.2003.00366.xGoogle Scholar
Mitchell, W., & Sloper, P. (2002). Information that informs rather than alienates families with disabled children: Developing a model of good practice. Health and Social Care in the Community. 10 (2), 74–81. doi: 10.1046/j.1365-2524.2002.00344.xCrossRefGoogle ScholarPubMed
Moher, D., Liberati, A., Tetzlaff, J., & Altman, D.G. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA Statement. PLoS Med 6 (6), e1000097. doi:10.1371/journal.pmed1000097Google Scholar
Mophosho, M., Widdows, J., & Taylor-Gomez, M. (2010). Relationships between adolescent children and their siblings with cerebral palsy: A pilot study. Journal on Developmental Disabilities. 15 (3), 81–87.Google Scholar
Navalkar, P. (2004). Fathers’ perception of their role in parenting a child with cerebral palsy: Implications for counselling. International Journal for the Advancement of Counselling. 26 (4), 375–382. doi: 10.1007/s10447-004-0173-yGoogle Scholar
Ogwumike, O.O., Adeniyi, F.A., & Obidiegwu, C.J. (2012). Psychosocial impact of caring for children with cerebral palsy on the family in a developing country. Journal of Pediatric Neurology. 10 (2), 117–124. doi: 10.3233/JPN-2012-0556Google Scholar
Palisano, R.J., Almarsi, N., Chiarello, L.A., Orlin, M.N., Bagley, A., & Magg, J. (2009). Family needs of parents of children and youth with cerebral palsy. Child: Care, Health and Development. 36 (1), 85–92. doi: 10.1111/j.1365-2214.2009.01030.xGoogle Scholar
Pfeifer, L.I., Silva, D.B.R., Lopes, P.B., Matsukura, T.S., Santos, J.L.F., & Pinto, M.P.P. (2013). Social support provided to caregivers of children with cerebral palsy. Child: Care, Health and Development. 39 (6), 1–6. doi: 10.1111/cch.12077Google Scholar
Popay, J., Roberts, H., Sowden, A., Petticrew, M., Arai, L., Rodgers, M., Britten, N., Roen, K. & Duffy, S. (2006). Guidance on the conduct of narrative synthesis in systematic reviews. Final report, Institute of Health Research, Lancaster: ESRC Methods Programme.Google Scholar
Rahi, J.S., Manaras, I., Tuomainen, H., & Hundt, G.L. (2004). Meeting the needs of parents around the time of diagnosis of disability among their children: Evaluation of a novel program for information, support, and liaison by key workers. Pediatrics. 114 (4), 447–482, doi: 10.1542/peds.2004-0240Google Scholar
Rentinck, I.C.M., Ketelaar, M., Jongmans, M.J., & 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 (2), 161–169. doi: 10.1111/j.1365-2214.2006.00643.xGoogle Scholar
Schuengel, C., Rentinck, I. C.M., Stolk, J., Voorman, J.M., Loots, G.M.P., Ketelaar, M., Gorter, J.W., & Becher, J.G. (2009). Parents’ reactions to the diagnosis of cerebral palsy: Associations between resolution, age and severity of disability. Child: Care, Health and Development. 35 (5), 673–680. doi: 10.1111/j.1365-2214.2009.00951.xGoogle Scholar
Sipal, R.F., Schuengel, C., Voorman, J.M., Van Eck, M., & Becher, J.G. (2009). Course of behaviour problems of children with cerebral palsy: The role of parental stress and support. Child: Care, Health and Development. 36 (1), 74–84. doi: 10.1111/j.1365-2214.2009.01004.xGoogle Scholar
Tomasello, N.M., Manning, A.R., & Dulmus, C.N. (2010). Family-centered early intervention for infants and toddlers with disabilities. Journal of Family Social work, 13 (2), 163–172. doi:10.1080/1052215090350 3010.Google Scholar
Vargus-Adams, J. (2011). Parent stress and children with cerebral palsy. Developmental Medicine and Child Neurology. 53 (9), 777. doi: 10.1111/j.1469-8749.2011.04037.xGoogle Scholar