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Invisible Contributions in Families with Children and Adults with Intellectual Disabilities*

Published online by Cambridge University Press:  31 March 2010

Gordon Grant
Gordon Grant*
Affiliation:
Sheffield Hallam University
*
Requests For Offprints Should Be Sent To:/Les Demandes De TirÉS-À-Part Doivent ÊTre AdressÉEs À: Gordon Grant, Centre for Health and Social Care Research, Sheffield Hallam University, 32 Collegiate Crescent, Collegiate Campus, Sheffield, UK, S10 2BP. (g.grant@shu.ac.uk)
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Abstract

For many years there has been an underlying pathology within the literature about families with children and adults with intellectual disabilities (Helff & Glidden, 1998). This literature has emphasized stress and burden, incapacity and dependency, leading to negative stereotyping of families in this context. Over the last 2 decades research has led to some important reconceptualizations of how families approach their caring, affording an improved understanding of how they deploy strengths and resources, and who benefits. This paper reviews this thinking, arguing that it provides a suitable context for understanding the scope and form of family caregiving contributions that are less visible, and therefore less recognized. An attempt is therefore made to chart invisible contributions. It is suggested that invisible contributions have implications for thinking about human and social capital (Putnam, 2000) as well as for practice in supporting families.

Résumé

Longtemps, la documentation sur les familles prenant soin d'un enfant ou d'un adulte atteint d'une déficience intellectuelle s'est enfoncée dans une ornière malsaine (Helff et Glidden, 1998). Elle a fait ressortir le stress et le fardeau, l'incapacité et la dépendance, pour donner lieu à un stéréotype négatif de la famille dans ce contexte. Dans les 20 dernières années, la recherche a revisité de fond en comble le concept de la famille qui prend soin d'un proche, afin de mieux faire connaître ses atouts et ses ressources, et ceux qui en bénéficient. l'article examine cette refonte, soutenant qu'elle offre un contexte plus approprié pour saisir l'ampleur et la forme de l'apport moins visible, donc moins reconnu, de la prestation des soins familiaux. Il s'efforce également de délimiter cet apport invisible. l'article affirme que l'apport invisible a un retentissement sur la façon de voir le capital humain et social (Putnam, 2000), et le soutien des familles.

Keywords

agingcaregiving rewardstransformationsinvisible contributionsvieillissementgratification de la prestation des soinstransformationapport invisible
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 26 , Issue S1: Hidden Costs/Invisible Contributions of Caregiving / Coûts cachés et contributions invisibles des soins , Winter/Hiver 2007 , pp. 15 - 26
Copyright
Copyright © Canadian Association on Gerontology 2007

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Footnotes

*

The author would like to thank members of the Hidden Costs and Invisible Contributions research program based at the University of Alberta for their helpful comments on a symposium paper from which the present paper was developed, and also two of the journal's anonymous reviewers.

References

Aldwin, C.M. (1994). Stress, coping and development: An integrative perspective. New York: Guilford.Google Scholar
Arber, S., & Ginn, J. (1995). Gender differences in informal caring. Health and Social Care in the Community, 3, 19–31.CrossRefGoogle Scholar
Bates, P., & Davis, F.A. (2004). Social capital, social inclusion and services for people with learning disabilities. Disability and Society, 19(3), 195–207.CrossRefGoogle Scholar
Beresford, B. (1994). Positively parents: Caring for a severely disabled child. London: HMSO.Google Scholar
Bigby, C. (2004). Ageing with a lifelong disability: A guide to practice, program and policy issues for human services professionals. London: Kingsley.Google Scholar
Booth, T., & Booth, W. (1994). Parental adequacy, parenting failure and parents with learning difficulties. Health and Social Care in the Community, 2, 161–172.CrossRefGoogle Scholar
Bourdieu, P. (1986). The forms of capital. In Richardson, J. (Eds.), Handbook of theory and research for the sociology of education. Westpoint: Greenwood.Google Scholar
Bowers, B.J. (1987). Inter-generational caregiving: Adult caregivers and their ageing parents. Advances in Nursing Science, 9(2), 20–31.CrossRefGoogle Scholar
Brown, H., Stein, J., & Turk, V. (1995). The sexual abuse of adults with learning disabilities: Report of a second two-year incidence survey. Mental Handicap Research, 8, 3–24.CrossRefGoogle Scholar
Bulmer, M. (1987). The social basis of community care. London: Allen and Unwin.Google Scholar
Cambridge, P., & Carnaby, S. (Eds.). (2005). Person-centred planning and care management with people with learning disabilities. London: Kingsley.Google Scholar
Clarke, A., & Clarke, A. (2003). Human resilience: A fifty-year quest. London: Kingsley.Google Scholar
Dalley, G. (1988). Ideologies and caring: Rethinking community and collectivism. London: Macmillan.Google Scholar
Department of Health. (2001). Valuing people: A new strategy for learning disability for the 21st century. Cm. 5086. London: HMSO.Google Scholar
Dowling, M., & Dolan, L. (2001). Families with children with disabilities: Inequalities and the social model. Disability and Society, 16(1), 21–35.CrossRefGoogle Scholar
Dunst, C.J., Trivette, C.M., & Deal, A.G. (1994). Supporting and strengthening families: Vol. 1. Methods, strategies and practices. Cambridge, MA: Brookline Books.Google Scholar
Edelson, M. (2000). My journey with Jake: A memoir of parenting and disability. Toronto: Between the Lines.Google Scholar
Finch, J., & Mason, J. (1993). Negotiating family responsibilities. London: Routledge.Google Scholar
Grant, G., & Nolan, M. (1993). Informal carers: Sources and concomitants of satisfaction. Health and Social Care in the Community, 1, 147–159.CrossRefGoogle Scholar
Grant, G., Nolan, M., & Keady, J. (2003). Supporting families over the life course: Mapping temporality. Journal of Intellectual Disability Research, 47(4 & 5), 342–351.CrossRefGoogle ScholarPubMed
Grant, G., Ramcharan, P., McGrath, M., Nolan, M., & Keady, J. (1998). Rewards and gratifications among family caregivers: Towards a refined model of caring and coping. Journal of Intellectual Disability Research, 42(1), 58–71.CrossRefGoogle ScholarPubMed
Grant, G., & Wenger, G.C. (1993). Dynamics of support networks: Differences and similarities between vulnerable groups. Irish Journal of Psychology, 14(1), 79–98.Google Scholar
Grant, G., & Whittell, B. (2000). Differentiated coping strategies in families with children and adults with intellectual disabilities: The influence of gender, family composition and the lifespan. Journal of Applied Research in Intellectual Disabilities, 13(4), 256–275.CrossRefGoogle Scholar
Greenberg, J.S., Seltzer, M.M., & Greenley, J.R. (1993). Aging parents of adults with disabilities: The gratifications and frustrations of later-life caregiving. Gerontologist, 33(4), 542–549.CrossRefGoogle ScholarPubMed
Hanson, M.J., & Lynch, E.W. (2004). Understanding families: Approaches to diversity, disability and risk. Baltimore: Brookes.Google Scholar
Hastings, R.P., & Taunt, H.M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107(2), 116–127.2.0.CO;2>CrossRefGoogle ScholarPubMed
Helff, C.M., & Glidden, L.M. (1998). More positive or less negative? Trends in research on adjustment of families having children with developmental disabilities. Mental Retardation, 36(6), 457–464.2.0.CO;2>CrossRefGoogle ScholarPubMed
Heller, T., Miller, A.B., & Factor, A. (1997). Adults with mental retardation as supports to their parents: Effects on parental caregiving appraisal. Mental Retardation, 35(5), 338–346.2.0.CO;2>CrossRefGoogle ScholarPubMed
McCormack, B., Kavanagh, D., Caffrey, S., & Power, A. (2005). Investigating sexual abuse: Findings of a 15-year longitudinal study. Journal of Applied Research in Intellectual Disabilities, 18, 217–227.CrossRefGoogle Scholar
McCubbin, H.I., McCubbin, M.A., & Thompson, A.I. (1993). Resiliency in families: The role of family schema and appraisal in family adaptation to crises. In Brubaker, T.H. (Ed.), Family relations: Challenges for the future (pp. 153–177). Newbury Park: Sage.CrossRefGoogle Scholar
McGrath, M., & Grant, G. (1993). The life-cycle and support networks of families with a mentally handicapped member. Disability, Handicap and Society, 8(1), 25–41.CrossRefGoogle Scholar
McKenzie, K., & Harpham, T. (2005). Social capital and mental health. London: Kingsley.Google Scholar
Most, D.E., Fidler, D.J., Laforce-Booth, C., & Kelly, J. (2006). Stress trajectories in mothers of young children with Down syndrome. Journal of Intellectual Disability Research, 50(7), 501–514.CrossRefGoogle ScholarPubMed
Murray, P., & Penman, J. (2000). Telling our own stories: Reflections on family life in a disabling world. Sheffield, UK: Parents with Attitude.Google Scholar
Nolan, M., Grant, G., & Keady, J. (1996). Understanding family care: A multidimensional model of caring and coping. Buckingham: Open University Press.Google Scholar
Nolan, M., Lundh, U., Grant, G., & Keady, J. (2003). Partnerships in family care: Understanding the caregiving career. Maidenhead: Open University Press.Google Scholar
Parker, G., & Lawton, D. (1994). Different types of care, different types of carer: Evidence from the general household survey. London: HMSO.Google Scholar
Patterson, J.M., Garwick, A.W. (1994). Theoretical linkages: Family meanings and sense of coherence. In McCubbin, H.I., Thompson, E.A., Thompson, A.I., & Fromer, J.E.. (Eds.), Sense of coherence and resiliency: Stress, coping and health (pp. 71–89). Madison, WI: University of Wisconsin Press.Google Scholar
Peters, S. (1996). The politics of disability identity. In Barton, L.. (Ed.), Disability and Society: Emerging Issues and Insights (pp. 215–234). Harlow, UK: Addison Wesley Longman.Google Scholar
Poehlmann, J., Clements, M., Abbeduto, L., & Farsad, V. (2005). Family experiences associated with a child's diagnosis of Fragile X or Down syndrome: Evidence for disruption and resilience. Mental Retardation, 43(4), 255–267.CrossRefGoogle ScholarPubMed
Prosser, H. (1997). The future care plans of older adults with intellectual disabilities living at home with family carers. Journal of Applied Research in Intellectual Disabilities, 10(1), 15–32.CrossRefGoogle Scholar
Putnam, R.D. (2000). Bowling alone: The collapse and revival of American community. New York: Simon Schuster.Google Scholar
Qureshi, H. (1986). Responses to dependency: Reciprocity, affect and power in family relationships. In Phillipson, C., Bernard, M., & Strang, R.. (Eds.), Dependency and interdependency in old age: Theoretical perspectives and policy alternatives. London: Croom Helm.Google Scholar
Ramcharan, P., & Grant, G. (2001). Views and experiences of people with intellectual disabilities and families (1): The user perspective. Journal of Applied Research in Intellectual Disabilities, 14(4), 348–363.CrossRefGoogle Scholar
Robbins, D. (2000). Bourdieu and Culture. London: Sage.CrossRefGoogle Scholar
Scorgie, K., & Sobsey, D. (2000). Transformational outcomes associated with parenting children who have disabilities. Mental Retardation, 38(3), 195–206.2.0.CO;2>CrossRefGoogle ScholarPubMed
Seltzer, M.M., Greenberg, J.S., & Krauss, M.W. (1995). A comparison of coping strategies of aging mothers of adults with mental illness or mental retardation. Psychology and Aging, 10, 64–75.CrossRefGoogle ScholarPubMed
Silva, E.B., & Smart, C.M. (Eds.). (1999). The new family?. London: Sage.Google Scholar
Stainton, T., & Besser, H. (1998). The positive impact of children with an intellectual disability on the family. Journal of Intellectual and Developmental Disability, 23, 111–129.CrossRefGoogle Scholar
Stalker, K. (2003). Reconceptualising work with “carers”: New directions for policy and practice. London: Kingsley.Google Scholar
Summers, J.A., Behr, S.K., Turnbull, A.P. (1989). Positive adaptation and coping strengths of families who have children with disabilities. In Singer, G.H.S., & Irvin, L.K.. (Eds.), Support for caregiving families (pp. 27–40). Baltimore: Brookes.Google Scholar
Todd, S., & Shearn, J. (1997). Family dilemmas and secrets: Parents' disclosure of information to their adult offspring with learning disabilities. Disability and Society, 12(3), 141–366.CrossRefGoogle Scholar
Williams, F. (2004). Rethinking families. London: Calouste Gulbenkian Foundation.Google Scholar
Wuest, J. (2000). Repatterning care: Women's proactive management of family caregiving demands. Health Care for Women International, 21, 393–411.Google ScholarPubMed