Family Caregivers Discuss Roles and Needs in Supporting Adults with Cerebral Palsy and Complex Communication Needs in the Hospital Setting
- 296 Downloads
The aim of this study was to explore the views of family caregivers of adults with cerebral palsy and complex communication needs (CCN) on their roles in the hospital setting and what would help them in these roles. As part of a larger study we conducted one focus group with six family caregivers who together explored issues surrounding involvement of family caregivers on the hospital ward. Participants described being involved in supporting communication and providing valuable information and guidance to hospital staff in caring for adults with cerebral palsy and CCN. The participants also suggested strategies to support family caregivers in their roles, to improve collaboration, and to benefit the patient with cerebral palsy and CCN. In this paper the authors present results of the focus group and discuss implications for policy and practice.
KeywordsFamily caregivers Cerebral palsy Complex communication needs Hospital Focus group
This study was supported in part through provision of a Public Health scholarship to the first author from the National Health and Medical Research Council of Australia. The authors would like to thank Ms. Monique Hines for her work as moderator’s assistant in the focus group.
- American Psychological Association (2001). Publication manual of the American Psychological Association (5th ed.). Washington: American Psychological Association.Google Scholar
- Australian Bureau of Statistics (2003). Disability, ageing and carers: Summary of findings. Catalogue 4430.0. Australian Bureau of Statistics.Google Scholar
- Australian Institute of Health and Welfare (2004). Carers in Australia: Assisting frail older people and people with a disability. Canberra: Australian Institute of Health and Welfare.Google Scholar
- Bowling, A. (1997). Research methods in health: Investigating health and health services. Buckinghamshire: Open University Press.Google Scholar
- Chambers-Evans, J. (2002). The family as window onto the world of the patient: Involving patients and families in the decision-making process. Clinical Journal of Nursing Research, 34(3), 15–31.Google Scholar
- Grbich, C. (1999). Qualitative research in health: An introduction. London: Sage.Google Scholar
- Hemsley, B., Balandin, S., & Togher, L. (2007a). Narrative analysis of the hospital experience for older parents of people who cannot speak. Journal of Aging Studies, 21, 239–254. p. 243.Google Scholar
- Hemsley, B., Balandin, S., & Togher, L. (2007c). “We need to be the centerpiece”: Adults with cerebral palsy and complex communication needs discuss the roles and needs of family carers in hospital. Disability & Rehabilitation (in press).Google Scholar
- Hemsley, B., Balandin, S., & Togher, L. (2007d). “I’ve got something to say”: Interaction in a focus group of adults with cerebral palsy and complex communication needs. Augmentative and Alternative Communication (in press).Google Scholar
- Hemsley, B., Balandin, S., & Togher, L. (2007e). Staff views on the roles and needs of family carers of adults with cerebral palsy and complex communication needs in hospital. Journal of Intellectual & Developmental Disabilities (in press).Google Scholar
- Krueger, R. A. (1998). Analyzing and reporting focus group results. In D. L. Morgan, & R. A. Krueger (Eds.) The focus group kit (vol. 6). Thousand Oaks, CA: Sage.Google Scholar
- Morgan, D. L., & Krueger, R. A. (1998). The focus group kit. Thousand Oaks, CA: Sage.Google Scholar
- Nolan, M. (2001). Working with family carers: Towards a partnership approach. Reviews in Clinical Gerontology, 11, 91–97. p. 5.Google Scholar
- NSW Department of Health. (2005). Policy Directive. Disability—People with disabilities: Responding to their needs during hospitalisation. NSW Department of Health Policy Division. http://www.health.nsw.gov.au/policies.
- Patton, M. Q. (2005). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage Publications, Inc.Google Scholar
- QSR (1999). QSR NVivo®. QSR International Pty. Ltd. http://www.qsrinternational.com.
- White, S. K., & Edwards, R. J. (2006). Visitation guidelines promote safe, satisfying environments. Nursing Management, 37(8), 21–24. pp. 23, 24.Google Scholar