Complexities in the Provision of Respite Care to Family Carers of Persons with Intellectual Disabilities
Respite care is generally thought to benefit family carers of persons with intellectual disabilities and is regarded as an important component of family-centred services. However, the complexities associated with the provision of such services, from the carer’s perspective, have been rarely investigated.
This qualitative research study was carried out through a participatory action research process that involved collaboration among researchers and family members as co-researchers. Seven focus groups, involving seventy family carers (fifty mothers, fifteen fathers and five sisters), were held in seven locations across the Republic of Ireland.
Three main themes dominated the discussions. The first theme related to the ambivalence of carers towards using respite services, as expressed in their reluctance to relinquish care-giving for even a short period; the feelings of guilt they experienced; and the greater needs of other carers. The second theme related to the benefits of respite breaks, but these were solely with respect to the carer and other family members, rather than to the person with an intellectual disability. The third theme regarding the quality of provision was dominated by concerns for the care the person received in using the services.
Respite care has the potential to make a difference, and these findings call for building much- needed alliances between all members of the family and professionals. This is in order to support one another through the difficulties associated with the redesign of existing respite provision, and the extension of these services to the growing number of carers who require respite breaks.
Intellectual disability, respite, family members, Ireland
Anfara V. A., Brown K. M. & Mangione T. L. (2002) Qualitative analysis on stage: Making the research process more public. Educational Researcher, 37, 28-38. http://dx.doi.org/10.3102/0013189X031007028
Barron S., McConkey R. & Mulvany F. (2006) Family carers of adult persons with intellectual disabilities on the island of Ireland. Journal of Policy and Practice in Intellectual Disability, 3, 87-94. http://dx.doi.org/10.1111/j.1741-1130.2006.00059.x
Beckford V. & Robinson C. (1993) Consolidation or Change? A Second Survey of Family-Based Respite Care Services in the UK, Bristol.
Brotherson M. J. & Goldstein B. L. (1992) Quality design of focus groups in early childhood special education research. Journal of Early Intervention, 16, 334-342. http://dx.doi.org/10.1177/105381519201600404
Burns E. J. & Buchard J. D. (2000) Impact of respite care for families with children experiencing emotional and behavioural problems. Children's Services, 3, 39-61. http://dx.doi.org/10.1207/S15326918CS0301_3
Caldwell J. & Heller T. (2003) Management of respite and personal assistance services in a consumer-directed family support programme. Journal of Intellectual Disability Research, 47, 352-366. http://dx.doi.org/10.1046/j.1365-2788.2003.00496.x PMid:12787166
Canavan, J. and Merriman, B. (2007). Towards Best Practice in the provision of respite services for people with intellectual disabilities and autism. National Parents and Siblings Alliance / Daisychain Foundation.
Chadwick, D. D., Finaly, F., Garcia Irarte, E., Greene, S., Harrington, J., Lawlor, A., Mannan, H., McConkey, R., O'Brien, P., Spain, J. & Turner, A. (2010). Family Voices: Life in Ireland for families of people with intellectual disabilities-Interim Report. National Institute for Intellectual Disability, Trinity College Dublin.
Chadwick O., Beecham J., Piroth N., Bernard S. & Taylor E. (2002) Respite care for children with severe intellectual disability and their families: who needs it? Who receives it? Child and Adolescent Mental Health, 7, 66-72. http://dx.doi.org/10.1111/1475-3588.00013
Chan J. B. & Sigafoos J. (2000) A review of child and family characteristics related to the use of respite care in developmental disability services. Child and Youth Care Form, 29, 27-37. http://dx.doi.org/10.1023/A:1009420206722
Chan J. B., Sigafoos J., Watego N. & Potter G. (2001) Adults with intellectual disability in long-term respite care: a qualitative study. Journal of Intellectual & Developmental Disability, 26, 339-344. http://dx.doi.org/10.1080/13668250120087344
Chesson, R.A., & Westwood, C.E. (2004). Making a break: Developing methods for measuring the impact of respite services. Aberdeen: Shared Care Scotland.
Chou Y. C., Tzou P. Y., Pu C. Y., Kroger T. & W.P. L. (2008) Respite Care as a Community Care Service: Factors Associated with the Effects on Family Carers of Adults with Intellectual & Developmental Disability in Taiwan. Journal of Intellectual & Developmental Disability, 33, 12-21. http://dx.doi.org/10.1080/13668250701832500 PMid:18300163
Cuskelly, M. (2006). Parents of adults with an intellectual disability. Family Matters No. 74, 0-25.
Department of Health and Children (2005) Health Statistics: Section L Expenditure Statistics. Dublin: The Stationery Office.
Disability Federation of Ireland (2008). Submission to National Carers' Strategy Consultation. Dublin, Disability Federation of Ireland.
Edmond A. & Eaton N. (2004) Supporting children with complex health care needs and their families: An overview of the research agenda. Child: care, health and development, 30, 195-199. http://dx.doi.org/10.1111/j.1365-2214.2004.00424.x PMid:15104573
Grant G. & Ramcharan P. (2001) Views and experiences of people with intellectual disabilities and their families (2). The family perspective. Journal of Applied Research in Intellectual Disabilities, 14, 364-380. http://dx.doi.org/10.1046/j.13602322.2001.00077.x
Hartey L. & Wells J. S. G. (2003) The meaning of respite care for mothers of children with learning disabilities: two Irish case studies. Journal of Psychiatric and Mental Health Nursing, 10, 335-342.
Health Services Executive (2011) Time to move on from congregated settings: A strategy for community inclusion. Dublin, HSE.
Heller T. & Caldwell J. (2005) Impact of a consumer-directed family support program on reduced out-of-home institutional placement. Journal of Policy and Practice in Intellectual Disability, 2, 63-65. http://dx.doi.org/10.1111/j.1741-1130.2005.00010.x
Hoare P., Harris M., Jackson P. & Kerley S. (1998). A community survey of children with severe intellectual disability and their families: psychological adjustment, carer distress and the effect of respite care. Journal of Intellectual Disability Research, 42, 218-227. http://dx.doi.org/10.1046/j.1365-2788.1998.00134.x
Horsburgh M., Trenholme A. & Huckle T. (2002) Paediatric respite care: A literature review from New Zealand. Palliative Medicine, 16, 99-105. http://dx.doi.org/10.1191/0269216302pm515oa PMid:11969153
Kelly F., Kelly C., Maguire G., & Craig S. (2009a). Annual Report of the National Intellectual Disability Database Committee 2008. HRB Statistics Series 6. Dublin, Health Research Board.
Kelly F, Craig S, McConkey R, & Mannan M (2009b). Lone parent carers of people with intellectual disabilities in the Republic of Ireland, British Journal of Learning Disabilities., 37, (4), 265- 270. http://dx.doi.org/10.1111/j.1468-3156.2009.00581.x
Krueger R. A. & Casey M. A. (2000) Focus groups: A practical guide for applied research (3rd ed.), Sage Publications, Inc., Thousand Oaks, California.
Lincoln Y. S. & Guba E. G. (1985) Naturalistic enquiry, Sage Publications, Inc., Newbury Park, California.
Lincoln Y. S. (1995) Emerging Criteria for quality in qualitative and interpretive research. Qualitative Inquiry, 1, 275-289. http://dx.doi.org/10.1177/107780049500100301
Llewellyn, G., Gething, L., Kenndig, H., & Cant, R. (2004). Older parent caregiversâ engagement with the service system. American Journal on Mental Retardation, 109, 379-396. http://dx.doi.org/10.1352/0895-8017(2004) 09<379:OPCEWT>2.0.CO;2
MacDonald E., Fitzsimons E. & Walsh P. N. (2006) Use of respite care and coping strategies among Irish families of children with intellectual disabilities. British Journal of Learning Disabilities, 35, 62-68. http://dx.doi.org/10.1111/j.1468-3156.2006.00399.x
McConkey R, Kelly F, Mannan H, & Craig S (2010). Inequalities in Respite Service provision: Insights from a National, Longitudinal Study of People with Intellectual Disabilities, Journal of Applied Research in Intellectual Disabilities, 23, (1), 85- 94. http://dx.doi.org/10.1111/j.1468-3148.2009.00547.x
McConkey, R. (2005) Fair shares? Supporting families caring for adult persons with intellectual disabilities. Journal of Intellectual Disability Research, 49, 600-612. http://dx.doi.org/10.1111/j.1365-2788.2005.00697.x PMid:16011553
McConkey, R., Truesdale, M. and Conliffe, C. (2004). The features of short-break residential services valued by families who have children with multiple disabilities. Journal of Social Work, 4, 61-75. http://dx.doi.org/10.1177/1468017304042421
McGrother C. W., Hauck A., Bhaumik S., Thorp C. & Taub N. (1996) Community care for adults with learning disability and their carers: needs and outcomes from the Leicestershire register. Journal of Intellectual Disability Research, 40, (2), 183-190. http://dx.doi.org/10.1111/j.1365-2788.1996.tb00621.x http://dx.doi.org/10.1046/j.1365-2788.1996.784784.x PMid:8731477
McNally S., Ben-Shlomo Y. & Newman S. (1999). The effects of respite care on informal carer's well being: a systematic review. Disability and Rehabilitation, 21, 1-14. http://dx.doi.org/10.1080/096382899298043
Nucleus Group (June 2002). Final report: Review current responses to meeting service needs of people with a disability and the effectiveness of strategies to support families. Australia, The Nucleus Consulting Group.
Miles, M.B., Huberman, A.M. (1994) Qualitative Data Analysis: An expanded sourcebook (2nd edn.), Sage: London & Thousand Oaks, California.
Mullins L. L., Aniol K., Boyd M. L., Page M. C. & Chaney J. M. (2002). The Influence of Respite Care on Psychological Distress in Parents of Children with Developmental Disabilities: A Longitudinal Study. Children's Services: Social Policy, Research and Practice, 5, 123-128. http://dx.doi.org/10.1207/S15326918CS0502_06
Patton, M. (2002). Qualitative research and evaluation methods. 3rd ed. Thousand Oaks, CA: Sage Publications.
Power. A. (2008). Its' the system working for the system: cares' experiences of learning disability in Ireland. Health and Social Care in Community, 1(1), 92-98.
Santelli B., Singer G., DiVenere N., Ginsberg C. & Powers L. E. (1998) Participatory action research: Reflections on critical incidents in a PAR project. Journal of the Association of Persons with Severe Handicaps, 23, 211-222. http://dx.doi.org/10.2511/rpsd.23.3.211
Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.
Treneman M., Corkery A., Dowdney L. & Hammond J. (1997) Respite care needs-met and unmet: assessment of needs for children with disability. Developmental Medicine Child Neurology, 39, 548-553. http://dx.doi.org/10.1111/j.1469-8749.1997.tb07484.x
Turnbull A. P., Friesen B. J. & Ramirez C. (1998) Participatory Action Research as a Model for Conducting Family Research. Journal of the Association of Persons with Severe Handicaps, 23, 178-188. http://dx.doi.org/10.2511/rpsd.23.3.178
United Nations. (2007). United Nations Convention on the Rights of Persons with Disabilities. United Nations: New York.
Venet M. & Dery M. (2004) Respite care services offered to families of children with mental disabilities or pervasive developmental disorder. European Journal of Mental Disability, 29, 33-49.
Walmsley J & Mannan H (2009). Parents as co-researchers: a participatory action research initiative involving parents of people with intellectual disabilities in Ireland, British Journal of Learning Disabilities, 37, (4), 271- 276. http://dx.doi.org/10.1111/j.1468-3156.2009.00582.x
Walsh, P N., Linehan C., Hillery J., Durkan J, Emerson E, Hatton C, and Robertson J M. Gregory N, Kessissoglou S. Hallam A, and Knapp M, and Jarbrink K., & Netten A.(2001) Family views of the quality of residential supports. Journal of Applied Research in Intellectual Disabilities, 14 (3). 292-309.
Williams V. & Robinson C. (2001) More than one wavelength: identifying, understanding, and resolving conflicts of interest between people with intellectual disabilities and their family carers. Journal of Applied Research in Intellectual Disabilities, 14, 30-46. http://dx.doi.org/10.1046/j.1468-3148.2001.00037.x
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