Abstract
Caring for and surviving the death of a child with a life-limiting illness has a profound and\r lasting effect on parents’ lives. Many studies have explored the emotional changes parents may experience shortly after their loss, but few have examined the long-term effects. It is important for genetic counselors that may work with these families to understand the range of experiences that can come with time. To explore the long-term experience, we designed an online anonymous survey that included questions about the deceased child’s illness and death, validated assessments of prolonged grief and posttraumatic growth, as well as questions about relationships with family, friends, work, and faith. We requested the participation of parents whose children died two or more years ago to a life-limiting, progressive, neurological condition through the National Tay-Sachs & Allied Diseases Association (NTSAD) and the National Mucopolysaccharidoses Society (MPS Society). Our study population, on average, experienced a moderate amount of posttraumatic growth, with a mean score of 27.62 on a 0-50 scale with highest scores in the subfactors of “appreciation of life” and “personal strength”. Some parents in our study reported difficulty motivating themselves for certain activities and trouble connecting with people who had not experienced a similar loss, but only a small minority of the study population met criteria for prolonged grief disorder (PGD). Since the death of their affected child, parents widely reported improvement in their relationships with their other children but little change in their relationships with parents, siblings, friends, colleagues and their work. Relationships with their partner or child’s other parent, as well as their personal faith and faith community experienced larger proportions of change, resulting in an almost even split between better, worse, and neither. Almost all of our 62 participants reflected on the care of their affected child without regret. The results of this study highlight the coexistence of difficulty and positive change in bereaved parents as well as the importance of support both during and after their child’s illness and death.