The Experiences and Needs of Parents Whose Children Died Due to Degenerative Disabilities: A Qualitative Analysis

Abstract

Remarkable advancements in life-saving technology have led to prolonged survival rates for premature infants and young children who have experienced trauma, illnesses, or medical disabilities. However, this progress has also led to a concurrent increase in long-term morbidity, including chronic and degenerative health conditions that result in early death. Early interventionists, special educators, and other multidisciplinary professionals are subsequently working with a growing number of families who are facing the potential deaths of their children due to life-threatening disabilities. To support parents facing such loss, an understanding of their life experiences and support needs is essential. However, most research related to supporting grieving parents is based on samples drawn from self-help bereavement support groups which typically consist of parents whose children died as a result of catastrophic illnesses or trauma. Little is known about supporting parents whose children are diagnosed with life-threatening or degenerative disabilities. This qualitative inquiry explored the experiences and needs of 7 bereaved parents whose children died between the ages of 3 and 21 due to a degenerative neuromuscular disease. Four professionals also participated for triangulation in this national study. Narrative analysis was used to search for themes in the stories shared by participants. The themes that emerged for parent experiences include: abundant stress from dissonance, exhaustion, chronic changes, unanticipated shock, and profound grief; ongoing struggles for validation; and, the positive impact of formal and informal supports. The themes that emerged for parent needs include: hope, information, useful resources, helpful networks, healthy partnerships, choices, and validation. Finally, the themes that emerged for preferred supports during loss and bereavement include: professionals' awareness of and attention to parent experiences and needs throughout the child's lifespan; ongoing connections with providers and activities that were a part of the child's life; and, support options beyond traditional bereavement groups. The results are discussed with reference to previous and emerging theory and research in parental bereavement. Practical implications and future research are also discussed.