The presence of a child with disabilities elicits a variety of stress demands on the family. Religion is recognized as a powerful personal, family, and cultural variable. However, little is known about the influence of religion in dealing with disability among families within particular religious groups. This descriptive study explored themes of spiritual belief and religious support among families of the Church of Jesus Christ of Latter-Day Saints (LDS, or Mormon) with a child with developmental disabilities. Parents shared perspectives of meaning that emerged from experiences with religion and family beliefs perceived to be unique. The core theme, “This is a Spiritual Experience,” provides the foundation for a descriptive model that depicts aspects of finding meaning and perceived transcendence.
Get full access to this article
View all access options for this article.
References
1.
Abbott, D.A. , & Meredith, W.H. (1986). Strengths of parents with retarded children. Family Relations, 35, 371-375.
2.
Astedt-Kurki, P. (1995). Religiosity as a dimension of well-being. Clinical Nursing Research, 4, 387-396.
3.
Bahr, H.M. , & Bahr, K.S. (1996). A paradigm of family transcendence. Journal of Marriage and the Family, 58, 541-555.
4.
Barton, J.A. , Magilvy, J.K., & Quinn, A.A. (1994). Maintaining the fighting spirit: Veterans living with multiple sclerosis. Rehabilitation Nursing Research, 3, 86-96.
5.
Bellah, R.N. , Madsen, R., Sullivan, W.M., Swidler, A., & Tipton, S.M. (1991). The good society. New York: Vintage.
6.
Bennett, T. , Deluca, D.A., & Allen, R.W. (1995). Religion and children with disabilities. Journal of Religion and Health, 34, 301-312.
7.
Berscheid, E. (1996). The “paradigm of family transcendence”: Not a paradigm, questionably transcendent, but valuable, nonetheless. Journal of Marriage and the Family, 58, 556-564.
8.
Byrd, E.K. , & Byrd, P.D. (1993). A listing of biblical references to healing that may be useful as bibliotherapy to the empowerment of rehabilitation clients. Journal of Rehabilitation, 59, 464-500.
9.
Byrd, R.C. (1998). Positive therapeutic effects of intercessory prayer in a coronary care unity population. South Medical Journal, 81, 826-829.
10.
Carroll, J.S. , Robinson, W.D., Marshall, E.S., Callister, L.C., Olsen, S.F., Dyches, T.T., & Mandleco, B.L.(2000). The family crucibles of illness, disability, death, and other losses. In D. Dollahite (Ed.), Strengthening our families: An in-depth look at the proclamation on the family. Salt Lake City, UT: Deseret Book.
11.
Chaves, M. , & Higgins, L.M. (1992). Comparing the community involvement of black and white congregations. Journal for the Scientific Study of Religion, 31, 425-440.
12.
Coward, D.D. (1990). The lived experience of self-transcendence in women with advanced breast cancer. Nursing Science Quarterly, 3, 162-169.
13.
Cruz, D. (1979). Outreach problems in Puerto Rico. In G. Dixon & C. Bridges (Eds.), On being Hispanic and disabled: The special challenges of an under served population. (Conference report, pp. 33-34).Washington, DC: Partners of the Americas. (ERIC Document Reproduction Service No. ED 210893).
14.
do Rozario, L.D. (1997). Spirituality in the lives of people with disability and chronic illness: A creative paradigm of wholeness and reconstitution. Disability and Rehabilitation, 19, 427-434.
15.
Dollahite, D.C. (in press-a). Fathering for eternity: Generative spirituality in Latter-Day Saint fathers of children with special needs. Review of Religious Research.
16.
Dollahite, D.C. (in press-b). A narrative approach to exploring responsible involvement of religious fathers with their special needs children. In R.D. Day & M.E. Lamb (Eds.), Reconceptualizing father involvement. Mahwah, NJ: Lawrence Erlbaum.
17.
Dollahite, D.C. , Marks, L.D., & Olson, M.M. (1998). Faithful fathering in trying times: Religious beliefs and practices of Latter-Day Saint fathers of children with special needs. Journal of Men’s Studies, 7, 71-93.
18.
Dossey, L. (1998). Prayer, medicine, and science: The new dialogue. Journal of Health Care Chaplancy, 7, 7-37.
19.
Dossey, L. (1999). Do religion and spirituality matter in health?A response to the recent article in The Lancet Alternative Therapies, 5, 16-18.
20.
Dyson, L.L. (1991). Families of young children with handicaps: Parental stress and family functioning. American Journal on Mental Retardation, 95, 623-629.
21.
Ellison, C.G. (1993). Religious involvement and self-perception among Black Americans. Social Forces, 71, 1027-1055.
22.
Ellison, C.G. (1994). Religion, the lifestress paradigm, and the study of depression. In J.S. Levin (Ed.), Religion in aging and health (pp. 78-1221). Thousand Oaks, CA: Sage.
23.
Ellison, C.G. , & Sherkat, D.E. (1993). Conservative Protestantism and support for corporal punishment. American Sociological Review, 58, 131-144.
24.
Ellison, C.G. , & Sherkat, D.E. (1995). Is sociology the core discipline for the scientific study of religion?Social Forces, 73, 1255-1266.
25.
Erin, J.N. , Rudin, D., & Njoroge, M. (1991). Religious beliefs of parents of children with visual impairments. Journal of Visual Impairment and Blindness, 85, 157-162.
26.
Ferguson, P.M. , & Heifetz, L.J. (1983). An absence of offering: Parents of retarded children and their experiences with the clergy. Pastoral Psychology, 32, 49-57.
27.
Ferraro, K.F. , & Koch, J.R. (1994). Religion and health among black and white adults: Examining social support and consolation. Journal for the Scientific Study of Religion, 33, 361-375.
28.
Fewell, R.R. (1986). Supports from religious organizations and personal beliefs. In R.R. Fewell & P.F. Fadasy (Eds.), Families of handicapped children: Needs and supports across the lifespan (pp. 296-316).Austin, TX: Pro-Ed.
29.
Finfgeld, D.L. (1995). Becoming and being courageous in the chronically ill elderly. Issues in Mental Health Nursing, 16, 1-11.
30.
Friedrich, W.N. , & Friedrich, W.L. (1981). Psychosocial assets of parents of handicapped and nonhandicapped children. American Journal of Mental Deficiency, 85, 551-553.
31.
Garland, C. (1993). Beyond chronic sorrow and a new understanding of family adaptation. In A.P. Turnbull, J.M. Patterson, S.K. Behr, D.I. Murphy, J.G. Marquis, & M.J. Blue-Barning (Eds.), Cognitive coping, families, and disability (pp. 67-80). Baltimore: P.H. Brookes.
32.
Grant, D.H. (1986). The relationship between psychiatrists and clergy. American Journal of Psychiatry, 143, 1317-1318.
33.
Hackett, C.D. (1986). Psychoanalysis and theology: Two dialectics. Journal of Religion and Health, 25, 29-45.
34.
Hall, B.A. (1994).Ways of maintaining hope in HIV disease. Research in Nursing and Health, 17, 283-293.
35.
Hawkins, A.H. (1993). Reconstructing illness: Studies in pathography. West Lafayette, IN: Purdue University Press.
36.
Haworth, A.M. , Hill, A.E., & Glidden, L.M. (1996). Measuring religiousness of parents of children with developmental disabilities. Mental Retardation, 34, 271-279.
37.
Heaton, T.B. , & Pratt, E.L. (1990). The effects of religious homogamy on marital satisfaction and stability. Journal of Family Issues, 11, 191-207.
38.
Heller, T. , Markwardt, R., Rowitz, L., & Farber, B. (1994). Adaptation of Hispanic families to a member with mental retardation. American Journal on Mental Retardation, 99, 289-300.
39.
Hershenson, D.B. (1992). Conceptions of disability: Implications for rehabilitation. Rehabilitation Counseling Bulletin, 35, 154-160.
40.
Jarvis, G.K. , & Northcutt, H.C. (1987). Religious differences in morbidity and mortality. Social Science & Medicine, 25, 813-824.
41.
Johnson, J.L. , & Morse, J.M. (1990). Regaining control: The process of adjustment after myocardial infarction. Heart and Lung, 19, 126-135.
42.
Kazak, A.E. , & Marvin, R.S. (1984). Differences, difficulties, and adaptation: Stress and social networks in families with a handicapped child. Family Relations, 33, 67-77.
43.
King, D.E. , & Bushwick, B. (1994). Beliefs and attitudes of hospital patients about faith healing and prayer. Journal of Family Practice, 32, 349-352.
44.
Lambert, J.D. ,&Thomasson, G.C. (1997).Mormon American families. In M.K. DeGenova (Ed.), Families in cultural context: Strengths and challenges in diversity (pp. 85-108). Mountain View, CA: Mayfield.
45.
Levin, J.S. (1984). The role of the Black church in community medicine. Journal of the National Medical Association, 76, 477-483.
46.
Levin, J.S. (1994). Investigating the epidemiologic effects of religious experience: Findings, explanations, and barriers. In J.S. Levin (Ed.), Religion in aging and health: Theoretical foundations and methodological frontiers (pp. 3-17). Thousand Oaks, CA: Sage.
47.
Levin, J.S. (1996). How religion influences morbidity and health: Reflections on natural history, salutogenesis and host resistance. Social Science & Medicine, 43, 849-864.
48.
Levin, J.S. , Larson, D.B., & Puchalski, C.M. (1997). Religion and spirituality in medicine: Research and education. Journal of the American Medical Association, 278, 792-793.
49.
Levin, J.S. , & Schiller, P.L. (1987). Is there a religious factor in health?Journal of Religion and Health, 26, 9-36.
50.
Levin, J.S. ,&Vanderpool, H.Y. (1989). Is religion therapeutically significant for hypertension?Social Science & Medicine, 29, 69-78.
51.
Leyser, Y. (1994). Stress and adaptation in orthodox Jewish families with a disabled child. American Journal of Orthopsychiatry, 64, 376-385.
52.
Leyser, Y. , & Dekel, G. (1991). Perceived stress and adjustment in religious Jewish families with a child who is disabled. Journal of Psychology, 125, 427-438.
53.
Lincoln, Y.S. , & Guba, E.G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage.
54.
Marks, L.D. , & Dollahite, D.C. (2001). Religion, relationships, and responsible fathering in Latter-Day Saint families of children with special needs. Journal of Social and Personal Relationships, 18, 625-650.
55.
Maton, K.I. , &Wells, E.A. (1995). Religion as a community resource for well-being: Prevention, healing, and empowerment pathways. Journal of Social Issues, 51, 177-193.
56.
Maugans, T.A. , & Wadland, W.C. (1991). Religion and family medicine: A survey of physicians and patients. Journal of Family Practice, 32, 210-213.
57.
McConkie, B.R. (1975). Mormon doctrine. Salt Lake City, UT: Bookcraft.
58.
McCubbin, M.A. , &Huang, T.T. (1989). Family strengths in the care of handicapped children: Targets for intervention. Family Relations, 38, 436-443.
59.
Moch, S.D. (1990). Health within the experience of breast cancer. Journal of Advanced Nursing, 15, 1426-1435.
60.
Moore, C.A. (2002, February 16). LDS church now 5th largest in U.S. Deseret News, pp. A1, A6.
61.
Morse, J.M. , & Johnson, J.L. (Eds.). (1991). The illness experience. Newbury Park, CA: Sage.
62.
Newman, M.A. , &Moch, S.D. (1991). The meaning of living with AIDS: A study using Parse’s theory of man-living-health. Nursing Science Quarterly, 4, 161-167.
63.
Noa, S. , Dumas, J.E., Wolf, L.C., &Fishman, S.N. (1989). Delineating sources of stress in parents of exceptional children. Family Relations, 38, 456-461.
64.
O’Dea, R.F. (1966). The sociology of religion. Englewood Cliffs, NJ: Prentice Hall.
65.
Pargament, K.I. (1997). The psychology of religion and coping: Theory, research, practice. NewYork: Guilford.
66.
Paterson, B. , Thorne, S., Crawford, J., &Tarko, M. (1999). Living with diabetes as a transformational experience.Qualitative Health Research, 9, 786-802.
67.
Patterson, J. (1993). The role of family meanings in adaptation to chronic illness and disability. In A.P. Turnbull, J.M. Patterson, S.K. Behr, D.I. Murphy, J.G. Marquist, &M.J. Blue-Barning (Eds.), Cognitive coping, families, and disability (pp. 221-238). Baltimore: P.H. Brookes.
68.
Pruyser, P.W. (1984). Religion in the psychiatric hospital: Areassessment. Journal of Pastoral Care, 38, 5-16.
69.
Quinn, A.A. , Barton, J.A., &Magilvy, J.K. (1995).Weathering the storm: Metaphors and stories of living with multiple sclerosis. Rehabilitation Nursing Research, 4, 19-27.
70.
Rehm, R.S. (1999). Religious faith in Mexican-American families dealing with chronic childhood illness.Image: Journal of Nursing Scholarship, 31, 33-38.
71.
Richards, P.S. , &Potts, R.W. (1995). Using spiritual interventions in psychotherapy: Practices, successes, failures, and ethical concerns of Mormon psychotherapists. Professional Psychology: Research and Practice, 26, 163-170.
72.
Riordan, J. , & Vasa, S.F. (1991, June). Accommodations for and participation of persons with disabilities in religious practice. Education and Training in Mental Retardation, 26(2), 151-155.
73.
Rogers-Dulan, J. , &Blacher, J. (1995). African American families, religion, and disability: A conceptual framework. Mental Retardation, 33, 226-238.
74.
Rutledge, C.M. , Levin, J.S., Larson, D.B., &Lyons, J.S. (1995). The importance of religion for parents coping with a chronically ill child. Journal of Psychology and Christianity, 14, 50-57.
75.
Sandelowski, M. (1986). The problem of rigor in qualitative research. Advances in Nursing Science, 8, 27-37.
76.
Sandelowski, M. (2000). Whatever happened to qualitative description?Research in Nursing and Health, 23, 334-340.
77.
Schmitt, R. (1978). Religious views of parents of retarded children. Journal of Religion and Health, 17, 80-87.
78.
Schnorr, M.A. (1983). Point: Religion—cause or cure?Perspectives in Psychiatric Care, 21, 34-35.
79.
Sevensky, R.L. (1984). Religion, psychology, and mental health. American Journal of Psychotherapy, 38, 73-86.
80.
Singer, L. , & Farkas, K.J. (1989). The impact of infant disability on maternal perception of stress. Family Relations, 38, 444-449.
81.
Skinner, D. , Bailey, D. (1997, March). Constructing a model for understanding how Latino families understand and respond to a young child with disabilities. Paper presented at the meeting of the Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, Riverside, CA.
82.
Sloan, R.P. , Bagiella, E., & Powell, T. (1999). Religion, spirituality, and medicine. Lancet, 353, 664-667.
83.
Sonuga-Barker, E.J.S. , Thompson, M., & Balding, J. (1993). Everyday beliefs about sources of advice for the parents of difficult children. Child: Care, Health, and Development, 19, 251-260.
84.
Sorensen, E.S. (1989). Religion and family health: A need for study. Family Science Review, 2, 303-316.
85.
Stahl, A. (1991). Beliefs of Jewish-Oriental mothers regarding children who are mentally retarded. Education and Training in Mental Retardation, 91, 361-369.
86.
Strauss, A. , & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
87.
Taylor, R.J. , & Chatters, L.M. (1988). Church members as a source of informal social support. Review of Religious Research, 30, 193-203.
88.
Thalman, J. (2002, February 16). Utah still unlike its neighbors. Deseret News, pp. A1, A6.
89.
Trost, J.E. (1986). Statistically nonrepresentative stratified sampling: A sampling technique for qualitative studies. Qualitative Sociology, 9, 54-57.
90.
Troyer, H. (1988). Review of cancer among four religious sects: Evidence that life-styles are distinctive sets of risk factors. Social Science & Medicine, 26, 1007-1017.
Venters, M. (1981). Familial coping with chronic and severe childhood illness: The case of cystic fibrosis.Social Science in Medicine, 15A, 289-297.
93.
Webb-Mitchell, B. (1993). Hope in despair: The importance of religious stories for families with children with disabilities. In J.L. Paul&R.J. Simeonsson (Eds.), Children with special needs: Family, culture, and society (2nd ed.). Orlando, FL: Harcourt Brace Jovanovich.
94.
Weisner, T.S. , Beizer, L., &Stolze, L. (1991). Religion and families of children with developmental delays.American Journal on Mental Retardation, 95, 647-662.
95.
Wikler, L. , Wasow, M., & Hatfield, E. (1981). Chronic sorrow revisited: Attitudes of parents and professionals about adjustment to mental retardation. American Journal of Orthopsychiatry, 51, 63-70.
96.
Wilson, M.R. , & Filsinger, E.E. (1986). Religiosity and marital adjustment: Multidimensional interrelationships.Journal of Marriage and the Family, 48, 147-151.
97.
Witter, R.A. , Stock, R.A., Okun, M.A., &Haring (1985). Religion and subjective well-being in adulthood: A quantitative synthesis. Review of Religious Research, 26, 332-342.
98.
Wright, L.M. (2000, July). Spirituality, suffering, and beliefs: An emerging trinity in family systems nursing. Paper presented at the meetings of the 5th International Family Nursing Conference, Chicago.
99.
Wright, L.M. , Watson, W.L., &Bell, J.M. (1996). Beliefs: The heart of healing in families and illness. NewYork: Basic Books.
100.
Wrigley, M. , &LaGory, M. (1994). The role of religion and spirituality in rehabilitation: A sociological perspective.Journal of Religion in Disability and Rehabilitation, 1, 27-40.
101.
Yoshida, K.K. (1993). Reshaping of self: A pendular reconstruction of self and identity among adults with traumatic spinal cord injury. Sociology of Health and Illness, 15, 217-245.
102.
Zea, M.C. , Quezada, R., &Belgrave, F.Z. (1994). Latino cultural values: Their role in adjustment to disability.Journal of Social Behavior and Personality, 9, 185-200.
