Parents’ Perceptions of the Impact of their Chronic Illness or Disability on their Functioning as Parents and on their Relationships with their Children

Abstract

This article reports on an exploratory study. Seventeen parents, self-reporting a chronic illness or disability, responded on the Internet to a questionnaire developed from grounded theory techniques. Their perceptions were collected both on their ability to parent and on their relationships with their children. Follow-up interviews were conducted with 6 participants by telephone. Overarching themes that emerged were that with the chronic illness or disability, (a) there occurred more negative than positive changes; (b) reduced personal power occurred in several contexts, including in family role changes; (c) parents worry about family coping; and (d) there is more interest in family counseling than in support groups. Implications for Internet support groups, psychoeducation on the Internet, and future research are discussed.

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References

Alliance for Technology Access . (n.d.). Alliance for Technology Access impact. Retrieved January 2, 1998, from http://www.ataccess.org/AboutUs/Impact%20Report/Impact96.html

Almagor, M. (1991). The relationship among fathers’ physical disability, agreement regarding marital satisfaction, and perception of children’s emotional state. Rehabilitation Psychology, 36, 241-254.

Armistead, L. , & Forehand, R. (1995). For whom the bell tolls: Parenting decisions and challenges face by mothers who are HIV seropositive. Clinical Psychology: Science and Practice, 2, 239-250.

Benson, V. , & Marano, M. A. (1998). Current estimates from the National Health Interview Survey, 1995. Hyattsville, MD: National Center for Health Statistics. Retrieved August 15, 1999, from http://www.cdc.gov/nchswww/products/pubs/pubd/hus/98husdes.htm

Borg, W. R. , & Gall, M. D. (1989). Educational research: An introduction (5th ed.). New York: Longman.

Boyer, C. , Baujard, V. , Scherrer, J. R. , & Appel, R. D. (1998, November 18). HON’s third survey on the usage of the Internet for medical & health Internet purposes. Poster presented at the Third Annual World Congress on the Internet in Medicine. Retrieved September 10, 1999, from the Health on the Net Web site: http://www.hon.ch/Library/PapersHON?mednet_survey_mai98.html

Giblin, P. (1995). Identity, change and family rituals. The Family Journal, 3, 37-41.

Mechanic, D. (1995). Sociological dimensions of illness behavior. Social Science Medicine, 41, 1208.

Miles, M. B. , & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook. Thousand Oaks, CA: Sage.

10.

Rolland, J. S. (1994). Families, illness and disability: An integrative treatment model. New York: Basic Books.

11.

Rolland, J. S. (1999). Parental illness and disability: A family systems frame-work. Journal of Family Therapy, 21, 242-266.

12.

Toms-Barker, L. , & Maralani, V. (1997, July). Challenges and strategies of disabled parents: Findings from a national survey of parents with disabilities (Final report). Berkeley, CA: National Resource Center for Parents With Disabilities, Through the Looking Glass.

13.

U. S. Bureau of the Census . (1999, July). Resident population estimates of the United States by sex, race, and Hispanic origin: April 1, 1990 to June 1, 1999. Retrieved October 7, 1999, from http://www.census.gov/population/estimates/nation/intfile3-1.txt

14.

U. S. Department of Commerce . (1998). International classification of diseases, ninth revision, clinical modification (6th ed.). (Available from National Technical Information Service, U.S. Department of Commerce Springfield, VA 22161).