Bereavement Experiences Among Parents of Children with Spinal Muscular Atrophy Type 1.

Background: Previous research has demonstrated that parental grief due to the death of a child from a chronic illness can impact a parent's health and work productivity. However, researchers have not adequately studied health-related quality of life (HRQOL) productivity, and social connection among bereaved parents of children who have died from spinal muscular atrophy (SMA) type 1. The goal of this study was to qualitatively explore these outcomes in this population.

Methods: We conducted semi-structured qualitative interviews with parents whose children died from SMA type 1 (n = 16) to explore bereavement outcomes. We analyzed participant characteristics using descriptive statistics. We audio-recorded, transcribed, and independently coded interviews with two researchers until we reached consensus. We conducted qualitative thematic analyses to identify interview themes.

Results: The death of a child from SMA type 1 is a life-changing experience for parents and impacts their outlook on life, health, relationships, and employment. Most parents first experienced grief when their child was diagnosed, and grief continued throughout their child's life and after death. Parents reported that social support, finding meaning and purpose in their life, and building routines helped to mitigate their grief, while social isolation, maladaptive coping mechanisms, and regret intensified grief.

Conclusions: This study characterizes the array of psychosocial and functional sequelae that bereaved parents undergo. This research can be used to develop appropriate interventions to support bereaved parents and develop surveys that can be used to study the longitudinal outcomes associated with grief.