Bereavement Experiences Among Parents of Children With Spinal Muscular Atrophy Type 1

Area of Science:

• Pediatric rare disease research
• Grief and bereavement studies
• Parental mental health and well-being

Background:

• Parental grief impacts health and work, but specific outcomes for SMA Type 1 are understudied.
• Spinal Muscular Atrophy (SMA) Type 1 is a severe, progressive neuromuscular disorder leading to early childhood death.
• Understanding the unique challenges faced by parents bereaved of a child with SMA Type 1 is crucial.

Purpose of the Study:

• To qualitatively explore health-related quality of life (HRQOL), productivity, and social connection in parents bereaved of a child with SMA Type 1.
• To gain in-depth insights into the lived experiences of these parents.
• To identify factors that influence parental adjustment post-bereavement.

Main Methods:

• Conducted semistructured qualitative interviews with 16 parents whose children died from SMA Type 1.
• Audio-recorded, transcribed, and independently coded interviews using thematic analysis.
• Analyzed participant characteristics using descriptive statistics.

Main Results:

• The death of a child with SMA Type 1 profoundly impacts parents' outlook, health, relationships, and employment.
• Grief was experienced from diagnosis through childhood and after the child's death.
• Social support, finding meaning, and establishing routines mitigated grief; isolation, maladaptive coping, and regret intensified it.

Conclusions:

• This study details the psychosocial and functional sequelae experienced by parents bereaved of a child with SMA Type 1.
• Findings can inform the development of targeted interventions and support programs for bereaved parents.
• This research provides a foundation for longitudinal studies on grief outcomes in this population.