A group for parents of children with fatal genetic illnesses.

Abstract

Parents whose children have progressive genetic disorders, such as Tay-Sachs, are confronted with a myriad of painful and compelling issues. This paper describes a long-term, open-ended group set up to allow parents of such children to work together on mutual concerns. The process of collaboration, the evolving structure of the group, and the challenges of working with this special population are explored.ith a growing awareness of the emo-

Tay-Sachs disease.

“…Chapters of the National Thy-Sachs and Allied Disease Association (NTSAD) have founded groups for families of children with Tay-Sachs disease and other fatal illnesses (Mack & Berman, 1988). The organization is unique in its collaboration with genetic professionals and professionals fkom other groups as well as in its ability to work with families of children both during their child's illness and after their death.…”

End-of-life issues in genetic disorders: Literature and research directions

“…The families, who feel abandoned after their child dies, receive an "ongoing sense of security and support" from the group. 1 A child's progressive disease can have an impact on the school community, as described in the case report of a 7-yearold boy with adrenal leukodystrophy. 3 The boy's terminal status was acknowledged with a DNR request, but despite his tenuous condition, the boy and his parents wanted him to continue in school as long as possible.…”

“…1 The parents of children with Tay-Sachs in this descriptive article could not rely on a family network because they often found themselves ostracized from their closest relatives, who were unable to accept the family affliction and its genetic origins.…”

“…The articles reviewed for the present report include primarily case reports and descriptive studies. Some of the issues addressed in the papers include but are not limited to the following: psychological and bereavement issues [1][2][3][4] ; cost of care at the end of life 5,6 ; decision-making regarding use of technological interventions [5][6][7][8] ; psychosocial reactions of parents and siblings 1,7,9 ; availability of supportive services 2 ; coordination-of-care concerns 2 ; advance directives 2,5,6 ; effect of death on siblings 1,2,4,7 ; quality of life 2,5,10,11 ; ethics 8,12 ; and palliative care. 2,11,13,14 Each of the papers included in this review approaches the issue from a unique, but often limited perspective such as a medical and cultural perspective of starting mechanical ventilation for Werdnig-Hoffmann disease patients in Japan 8 or costs and availability of palliative care in Australia.…”

Nurturing a Self-Help Group

“…Yoak and Chesler (1985) similarly found that 52% of the groups they studied were led either by a professional or co-led by a professional and a nonprofessional self-helper. In addition to articles such as these, much of the available literature on selfhelp is devoted to research that involved professionals and self-help groups (e.g., Mack & Berman, 1988;Silverman, 1976;Storer, Frate, Johnson, & Greenberg, 1987) and to publications that described ways in which professionals may assist self-help groups (e.g., Gartner & Riessman, 1982;Gitterman, 1989;Powell, 1987Powell, , 1990van der Avort & van Harderden, 1985).…”