An examination of the psychosocial impact of familial dysautonomia on the family
Familial dysautonomia (FD) is a rare, chronic, Jewish genetic illness that results in the dysfunction of the sensory and autonomic nervous systems (Axelrod, 1996). Although much research has been conducted with families of children with other, more prevalent chronic illnesses, such as cystic fibrosis and type 1 diabetes, regarding the psychosocial impact of having and being a family member with these illnesses, no research has been conducted with families of children with FD. The current study is a qualitative research study utilizing a modified grounded theory approach to examine the salient psychosocial experiences of families of individuals with FD. Using semi-structured interviews, the researcher interviewed six FD families, including the mother, father, the individual with FD, and one unaffected sibling. Fifteen core themes emerged from the interviews, most of which contained several subthemes that elaborated on each larger core theme. These core themes fell into four broader areas, including the sibling relationship, the marital relationship, the impact of FD on the family members, and community-related issues. The core themes that emerged were the limited sibling relationship, the unaffected sibling as a third parent, the negative impact of FD on the marital relationship, the marriage being enhanced by FD, long-term care issues for the child with FD, the limitations of FD on the individual with FD, the limitations imposed by FD on the family, the benefits of having a family member with FD, the parents' reactions to the diagnosis, the feeling that others cannot relate to the experience of having a family member with FD, the feeling of the unaffected siblings that their parents paid more attention to their siblings with FD than to them, the families' experiences with the healthcare system, the schools' ability to accommodate the special needs of the children with FD, respite care issues, and feeling a lack of support from the Jewish community. The themes that emerged from the interviews are used to highlight the salient experiences of FD families for mental health practitioners, physicians, and community members.
Individual & family studies;
0603: Counseling Psychology
0622: Clinical psychology
0628: Individual & family studies
0751: Judaic studies