The lived experiences of Iranian family members with Disable children: A phenomenological study

Abstract

Background: The birth of a child with disability is an event that has a dramatic impact on the whole family and its interactions. Therefore, it is necessary to investigate about family functions in such situations. There is compelling evidence that some families can never cope with this event. Since knowing about families' experiences of having a child with disability helps caregivers to have a deep understanding of family status, individual and social relations of the affected members, the results of this study will be beneficial to caregivers dealing with this population. Materials and Methods: This study was a qualitative one and because it dealt with human experiences, the research method was descriptive phenomenological. 12 subjects who were members of families with a disabled child taken care of in Rehabilitation Centers, selected through the goal-oriented sampling. The research data was obtained via audio-taped interviews. Researchers used in-depth and unstructured Interview which involved open and exhaustive questions. Data was statistically analyzed by Collaizi method. Results: Data was compiled and subsequently transcribed from 18-hour audio-taped interviews with the 12 subjects participated in this study. Then researcher formulated the meanings of each significant statement into 74 codes and organized the formulated meanings into following 5 clusters of themes: 1- protective structure 2- adjustment 3-interactions 4- child characteristics and 5- Psychological stress. Conclusion: The results indicated that having a disabled child in family leads to psychological problems and large changes in all aspects of all family members' lives, so affects their interaction. Family members use many ways to make adaptation or to return to normal life. Despite all psychological problems and conflicts, family wants to support the child with special disability as a member. The social, psychological and economical problems that family with children with disabilities experienced could lead to conflicts in the family and might lead to changes in the performance of individuals and their roles in the family.