Journal of pain and symptom management · 2025
Bereavement Experiences Among Parents of Children With Spinal Muscular Atrophy Type 1.
СтатьяНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
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Mulé Christina M, Riley Abigail, Lerner Debra, Vesel Tamara, Galea Claudio, Song Michael, Truong Samantha, Belter Lisa, Kowal Stacey, Fox David, Shapouri Sheila, O'Toole Colleen McCarthy, Lavelle Tara A
Аннотация
CONTEXT: 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.
OBJECTIVE: The goal of this study was to qualitatively explore these outcomes in this population.
METHODS: We conducted semistructured 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.
OBJECTIVE: The goal of this study was to qualitatively explore these outcomes in this population.
METHODS: We conducted semistructured 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.