Document Type : Original Article

Authors

1 Dialysis Clinic, Ottawa General Hospital, Ottawa, ON, Canada

2 Department of Midwifery, Isfahan University of Medical Sciences

3 Department of Adult Health, School of Nursing and Midwifery, Nurse Office in Deputy of Treatment Isfahan University of Medical Science, Isfahan,

4 Medical Education Development Center, Arak University of Medical Sciences, Arak, Iran

Abstract

BACKGROUND: If we take the family as a circle, the disabled child is in the center of the circle and
weights on all communications in the family. Therefore, in this research, the experiences of all family
members are studied. The knowledge about families’ experiences helps the caregivers to have a
deep recognition of family status and individual and social relations.
MATERIALS AND METHODS: This was a phenomenological study. Participants were Iranian
families with disabled child and were selected by a goal‑oriented sampling. Data collection was
done through an unstructured interview. Interviews were transcript based. Data analysis was done
by Colaizzi’s method. Codes were extracted from the interviews and then the main concepts were
formed by organizing the formulated meanings into clusters of themes.
RESULTS: Data were being compiled from the 18‑h interview tapes and the verbatim transcription of
the interviews with the 12 study participants. Then, the researchers formulated the meanings of each
significant statement into 65 codes and organized the formulated meanings into following four clusters
of themes: 1 – protective structure, 2 – adjustment, 3 – social isolation, 4 – psychological tension.
CONCLUSION: The existence of a disabled child may lead to psychological and spiritual distress
and vast changes in every aspect of each member of the family.

Keywords

1. Lauver LS. The lived experience of foster parents of children
with special needs living in rural areas. J Pediatr Nurs 2010;
25:289‑98.
2. Eddy LL, Engel JM. The impact of child disability type on the
family. Rehabil Nurs 2008; 33:98‑103.
3. Hoseini M. Family Health Nursing. 7th ed. Tehran: Boshra; 2013.
p. 93.
4. Barbosa MA, Chaud MN, Gomes MM. Experiences of mothers of
disabled children: A phenomeno‑logical study. Acta Paul Enferm
2008; 21:46‑52.
5. Shariati N, Davarmanesh A. The Effects of the Child’s Mental
Retadation on his/her Family. 2nd ed. Tehran: Social Welfare and
Rehabilitation Sciences Publisher; 2013. p. 452.
6. Mortazavi H, Tabatabaei Chehr M. Textbook of Pediatric Nursing.
2nd ed. Tehran: Salemi; 2008. p. 19.
7. Malek Pour M. Family Health and Mental Retardation. 1st ed.
Tehran: Tebyan; 1996. p. 55.
8. Gabbard G. Family Experiences: Ways to Lead Change through
Telling your Story, in Early Childhood Bulletin. Boston,
Massachusetts: NECTAS at the Federation for Children with
Special Needs; 1998. p. 1‑7.
9. Polite DF, Beck CT. Nursing Research: Principles and Methods.
7th ed. Philadelphia: lippincott Williams and Wilkins; 2007.
10. Speziale HS, Streubert HJ, Carpenter DR. Qualitative Research
in Nursing: Advancing the Humanistic Imperative. Philadelphia:
Wolters Kluwer Health/Lippincott Williams and Wilkins; 2011.
p. 92‑3.
11. Thwala SK, Ntinda K, Hlanze B. Lived Experiences of parents’ of
children with disabilities in Swaziland. J Educ Train Stud 2013;
3:206‑15.
12. Sen E, Yurtsever S. Difficulties experienced by families with
disabled children. J Spec Pediatr Nurs 2007; 12:238‑52.
13. Arksey H, Bresford B, Greco V, Slopper P. Outcomes for Parents with Disabled Children. University of New York: Social Policy
Research Unit; 2007. p. 1‑23.
14. Jarvis A. Disabled children and housing needs. House Care
Support 2008; 11:9.
15. Kermanshahi SM, Vanaki Z, Ahmadi F, Azadfalah P. Perceived
support among Iranian mothers of children with learning
disability. Rehabil Nurs 2009; 34:135‑40.
16. Godress J, Ozgul S, Owen C, Foley‑Evans L. Grief experiences
of parents whose children suffer from mental illness. Aust N Z J
Psychiatry 2005; 39:88‑94.
17. Hartley S, Ojwang P, Baguwemu A, Ddamulira M, Chavuta A.
How do carers of disabled children cope? The Ugandan
perspective. Child Care Health Dev 2005; 31:167‑80.
18. Neely‑Barnes SL, Dia DA. Families of children with disabilities:
A review of literature and recommendations for interventions.
J Early and Intensive Behav Interv 2008; 5:93‑107.
19. Koshti Richman A. Caring for a disabled child at home: parents’
views. Paediatr Nurs 2009;21 (6): 19.