Indian Journal of Health and Wellbeing

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Promoting Resiliency in Families of Individuals with Disabilities:Role of Coping Resources, Family Support, Social Participation and Perceived Burden


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1 Department of Psychology, Gargi College, University of Delhi, Delhi, India
     

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A severe disease or the birth of a disabled child may lead the family into the unexpected 'career' of 'caregiving that causes the whole family to re-evaluate its ways of fhnetioning. The situation may affect the parents' marital relationship, their work and leisure-time activities, siblings and economy. A child's disability brings the parents face to face with tasks such as helping the child to live with his or her illness or disability and to deal with problems brought along with the disability. At the same time, they have to encourage him/her in developing as normally as possible, and they have to achieve all this in such a manner that the family can function normally as an entity. One factor that will most likely contribute to whether or not this can be done is how the parents can cope with the stress caused by the situation. Research shows that some families manage well but others do not; therefore, it is important to understand what factors contribute to differences between families who seem to manage well from those who seem to encounter large number of problems. The present study focuses on understanding how parents experience their child's disability and how, in their opinion, it has affected both themselves and the functioning of the family. One of the major reasons for undertaking this research is the desire to examine the factors that help families cope well with disabled children, as well as to identify those factors which differentiate between parents who seem to manage well from those who seem to encounter large number of problems. Previous studies have also emphasized that this research area is highly significant one because it is important to find risk factors so as to be able to help families in time. Parents need information, advice and support in order to face up to their child's disability, and to address the problems of their children's upbringing. Families in the present study have expressed strongly the emotional, social and economic cost in caring for a child with a disability. The distress could be alleviated by more aware and responsive support from informal and culturally sensitive formal sources. The goals of a responsive community should be to enhance coping resources that maximize the daily achievement of personal and family goals. Therefore, there should be a focus on community-based strategies that facilitate the inclusion of children with disabilities, as well as direct family support strategies to facilitate positive attitudes to inclusion of children with disabilities to contribute to family coping.

Keywords

Resilience, Coping Resources, Family Support, Disabilities.
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  • Austin, J. K. (1990). Assessment of coping mechanisms used by parents and children with chronic illness. American .Journal of Maternal and Child Nursing, 15(2), 98102.

  • Baldwin, S., & Carlisle, J. (1994). Social support for disabled children and their families: A review ofliterature. SocialWork Services Inspectorate: Edinburgh.

  • Baxter, C. (1980). Primary disability and secondary handicap: A rationale for the development of family oriented social intervention services. Rehabilitation Australia, pp. 29-34.

  • Behr, S. K., & Murphy, D.L. (1993). Research progress and promise: The role of perceptions in cognitive adaptation to disability. In A. P. Turnbull, J. M. Patterson, S. K. Behr, D. L. Murphy, J. G. Marquis, and M. J. Banning (Eds.), Cognitive coping, families and disability ('p'p. 151-163). Baltimore: P.H. Brooks Publishings.

  • Benson, H. A., & Turnbull, A. P. (1986). Approaching families from an individualized perspective. In R.H. Homer, L.H. Meyer, andH.D.B. Fredericks (Ed.), Education of learners with severe handicaps: Exemplary service strategies (pp. 289-314). London: Paul H. Brooks Publishing Co.

  • Boss, P., & Mulligan, C. (2003). ^amil-y stress. ND: Sage Publications.

  • Bouma, R., & Suhweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46, 722-730.

  • Bristol, M. M., & Schopler, E. (1988). Mothers and fathers of young developmentally disabled and non-disabled boys: Adaptation and spousal support. Developmental Psychology, 24,441-451.

  • Bronfenbrenner, U. (1994). The ecology of human development. Cambridge: Harvard University Press.

  • Brown, C. (1994). Parents and professionals. InK. Ballard (Ed.), Op. Cz7(pp. 231-245).

  • Burr, W. R., & Klien, S. R. (1994). Reexamining_family stress. London sage Publishers.

  • Byme,E. A., & Cunningham, C. C. (1985). The effects ofmentally handicapped children on families: A conceptual review. .Journal of Child Psychology and Psychiatry, 26(6), 847-864.

  • Caplan, G. (1974). Principles of preventive psychiatry. NY: Basic Books.

  • Cummins, R. A. (2001). The subjective well-being of people caring for a family member with severe disability at home: A review. .Journal of Intellectual and Developmental Disability, 26(3), 2-8.

  • Cummins, R. A., & Baxter, C. (1997). The influence of disability and service delivery on quality of life within families. International Journal of Practical Approaches to Disability, 21(3), 2-8.

  • Cuskelly, M. (1998). Cautionsfor practioners: Research on the adjustment of siblings of a child'with a disability. University of Queensland Family Centre Newsletter (1): Online.

  • Dale, N. (1996). Working with families of children with special needs. London: Routledge.

  • Darling, R. B., & Baxter, C. (1996). families in focus: Sociological methods in early intervention. Austin, Texas : Pro-Ed.

  • Downer, R., Huff, B., Gnetry, M., McKinney, D., Duncan, J., Thompson, S., & Silver, P. (1995). Expectations of case management for children with emotional problems. In FriesnerandPoertner(Eds.), Op Cit(pp. 27-36).

  • Drummond, J., Kysela, G. M., McDonald, L., & Queny, B. (2002). The family adaptation model: Examination of dimensions and relations. Canadian .Journal of Nursing Research, 24(), 29-46.

  • Dunst, C. J., Trivette, C.M., & Deal, A. G. (1994). Supporting and strengthening families: Methods, strategies and practices. Cambridge, M. A. :BrooklineBooks.

  • Dunst, C., Trivette, C., & Cross, A. (1986). Mediating influences of social support: Personal, family and child outcomes. American .Journal of Mental Deficiency, 90(4), 403 -441.

  • Dycon, L. L. (1997). Fathers and mothers with school age children with developmental disabilities: Parental stress, family functioning and social support. American Journal of Mental Retardation, 102, 267-279.

  • Farber,B., &De Olios (1992). Increasing knowledge on family issues: Research agenda for 2000. In L. Rowitz (Ed.), Mental retardation in the-year 2000. NY: Springer- Verlog.

  • Foy, E. (1997). Parental grieving of childhood disability. Australian Social Work, 50(1), 39-44.

  • Freidrich, W. N. (1979). Predictors of the coping behaviour of mothers and their handicapped children. .Journal of Consulting and Clinical Psychology, 47, 1140 - 1141.

  • Freidrich, W. N., Wiltumer, L. T., & Cohen, D. S. (1985). Coping resources and parenting mentally retarded children. American .Journal of Mental Deficiency, 90, 130-139.

  • Frey, K. S., Greenberg, M. T., & Fewell, R. R. (1989). Stress and coping among parents of handicapped children: A multidimensional approach. American Journal of Mental Retardation, 94, 240-249.

  • Fyffe, C., Garidia-Payne, S.T., & McCbbery, J. (1995). Early intervention and families inrwssLl'VicXoxia.. Australian Jour-nalofEarl-y Childhood, 20(4), 34-39.

  • Hammer, L. A., & Marting, M. S. (1988). Coping resource inventory. Consulting Psychological Press.

  • Heaman, D. J. (1995). Preceived stressors and coping strategies of parents who have children with developmental disabilities: A comparison of mothers and fathers. Journal of Pediatric Nursing, 70(5),311 -320.

  • Hirch, B. J. (1980). Natural support systems and coping with major life changes. American Journal of Community Psychology, 8, 159-172.

  • Holroyd, J., & McArthur, D. (1976). Mental retardation and stress on the parents: A contrast between down's syndrome and childhood autism. American Journal of Mental Deficiency, 80,431-436.

  • Johnson, S.B. (1985). The family and the childwith chronic illness. InD. C. Turk (Eds.), Health, illness andfamilies: A lifespan perspective (pp. 108-145). NY: John Wiley and Sons.

  • Kasari, C., & Sigman, M. (1997). Linking parental perceptions to interactions in young children with autism. .Journal ofAutism and Developmental Disorders, 27(1), 3957.

  • Kazak, A. E. (1989). Families of chronically ill children: A systems and social- ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology, 57(l),25-s3Q.

  • Kazak, A. E. (1989). Families of chronically ill children: A systems and social-ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology, 57(l),25-30.

  • Lavee, Y., McCubbin, H.I., & Patterson, J. M. (1985). The double ABCX model of family stress and adaptation. Journal of Marriage and the Family, 47(4), 811 -825.

  • Lawton, M., Brody, E., & Pmchno, R. (1987). Caregiving and mental health: A multifaceted approach. Unpublished manuscript, Philadelphia Geriatric Center.

  • Lazarus, R. S., &Folkman, S. (1984). Stress, appraisala-ndcoping. NY: Spriger.

  • Li, L.W., Seltzer, M.M., & Greenberg, J.S. (1997). Social support and depressive symptoms differential patterns in wife and daughter caregivers. Journal of Gerontology: Social Sciences, 525(S2B), S200-S211.

  • Lavee, Y., McCubbin, H.I., & Patterson, J. M. (1985). The double ABCX model of family stress and adaptation. Journal of Marriage and the Family, 47(4), 811 -825.

  • Lawton, M., Brody, E., & Pmchno, R. (1987). Caregiving and mental health: A multifaceted approach. Unpublished manuscript, Philadelphia Geriatric Center.

  • Lazarus, R. S., &Folkman, S. (1984). Stress, appraisal a-nd coping.lNY-. Spriger.

  • Li, L.W., Seltzer, M.M., & Greenberg, J.S. (1997). Social support and depressive symptoms differential patterns in wife and daughter caregivers. Journal of Gerontology: Social Sciences, 575{S2B), S200-S211.

  • McCubbin, H. I., & Patterson, J. M. (1981). Systematic assessment offamily stress, resources and coping: Toolsfor research, education, and clinical intervention. St. paul, MN: Deppt. ofFamily Social Science.

  • McCubbin, H. I., & Patterson, J. M. (1982). Family adaptation of crisis. In H. McCubbin, A. Cauble, and J. Patterson (Eds.), Family stress, coping and social support (pp. 2647). Springfield, IL: C.C. Thomas.

  • McCubbin, H.I., & Patterson, J. M. (1983). The family stress process: The double ABCX model of adjustment and adaptation. In H. I. McCubbin, M. B. Sussman, and J. M. Patterson (Eds.), Social stress and thefamily: Advances and development in family stress theory and research (pp. 7-37). NY: Haworth.

  • McKinney, B., & Peterson, R. A. (1987). Predictors of stress in parents of developmentally disabled children. Journal of Pediatric Psychology 12, 133-150.

  • Patterson, J. M., & Garwick, A. W. (1994). Levels of meaning in family stress theory. Famil-y Process, 33, 287 -304.

  • Roos, P. (1985). Parents of mentally retarded children. In Turnbull and Turnbull (Eds.), Opcit(pp. 245-257).

  • Scorgie, K., Wilgash, L., & McDonald, L. (1998). Stress and coping in children with disabilities: An examination of recent literature. Developmental Disabilities Bulletin, 2d(l), 22-42.

  • Sloper,P., & Turner, S. (1993). Risk and resistance factors in the adaptation of parents of children with severe physical disability. .Journal of Child Psychology and Psychiatry, 34(2), 167-188.

  • Snowdon, A. W., Cameron, S., & Dunham, K. (1984). Relationships between stress, coping resources and satisfaction with family functioning in families of children with disabilities. Canadian Journal of Nursing Research, 26(3), 63 -73.

  • Stainton, T., & Bessor, H. (1998). The positive impact of children with an intellectual disability in the family. .Journal of Intellectual and Developmental Disability, 23(1), 57-70.

  • Summers, J. A., Behr, S. K., & Turnbull, A.P. (1989). Positive adaptation and coping strengths of families who have children with disabilities. In Singer and Irwin (Eds.), Op citipp. 27-40).

  • Szwarc, B. (1998). A study of families perceptions of the supports available in the community for families with a child with a life-threatening illness. Children Australia, 23(2), 21-27.

  • Turnbull, A. P., &Ruef, M. (1997). Family perspectives on inclusive lifestyle issues for people with problem behaviour. Exceptional Children, 63(2), 211-227.

  • Turnbull, A. P., & Turnbull, H. R. (1990). families, professionals and exceptionality: A special partnership. NY: Macmillan.

  • Wikler, L. (1981). Chronic stresses of families with mentally retarded children. Family Relations, 30,281-288.

  • Willoughby, J. C., & Glidden, L. M. (1995). Fathers helping out: Shared childcare and marital satisfaction of parents of children with disabilities. American Journal on Mental Retardation, 99(4), 399-406.

  • Zarit, S.H., Reeves, K. E., &Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates offeelings ofburden. The Gerontologist, 20, 649-655.


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  • Promoting Resiliency in Families of Individuals with Disabilities:Role of Coping Resources, Family Support, Social Participation and Perceived Burden

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Authors

Sangeeta Bhatia
Department of Psychology, Gargi College, University of Delhi, Delhi, India

Abstract


A severe disease or the birth of a disabled child may lead the family into the unexpected 'career' of 'caregiving that causes the whole family to re-evaluate its ways of fhnetioning. The situation may affect the parents' marital relationship, their work and leisure-time activities, siblings and economy. A child's disability brings the parents face to face with tasks such as helping the child to live with his or her illness or disability and to deal with problems brought along with the disability. At the same time, they have to encourage him/her in developing as normally as possible, and they have to achieve all this in such a manner that the family can function normally as an entity. One factor that will most likely contribute to whether or not this can be done is how the parents can cope with the stress caused by the situation. Research shows that some families manage well but others do not; therefore, it is important to understand what factors contribute to differences between families who seem to manage well from those who seem to encounter large number of problems. The present study focuses on understanding how parents experience their child's disability and how, in their opinion, it has affected both themselves and the functioning of the family. One of the major reasons for undertaking this research is the desire to examine the factors that help families cope well with disabled children, as well as to identify those factors which differentiate between parents who seem to manage well from those who seem to encounter large number of problems. Previous studies have also emphasized that this research area is highly significant one because it is important to find risk factors so as to be able to help families in time. Parents need information, advice and support in order to face up to their child's disability, and to address the problems of their children's upbringing. Families in the present study have expressed strongly the emotional, social and economic cost in caring for a child with a disability. The distress could be alleviated by more aware and responsive support from informal and culturally sensitive formal sources. The goals of a responsive community should be to enhance coping resources that maximize the daily achievement of personal and family goals. Therefore, there should be a focus on community-based strategies that facilitate the inclusion of children with disabilities, as well as direct family support strategies to facilitate positive attitudes to inclusion of children with disabilities to contribute to family coping.

Keywords


Resilience, Coping Resources, Family Support, Disabilities.

References