Department of Psychology, Auburn University, Auburn, Alabama, USA.
Department of Psychology, Auburn University, Auburn, Alabama, USA.
J Pain Symptom Manage. 2020 Oct;60(4):790-800. doi: 10.1016/j.jpainsymman.2020.04.018. Epub 2020 Apr 30.
Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention.
This study qualitatively explores the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child before his or her death from cancer.
Twelve bereaved parents and 12 healthcare providers participated in individual semistructured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Qualitative data were analyzed via conventional content analysis.
Five themes emerged. Legacy artwork allows for family bonding and opens communication regarding the child's impending death; provides opportunities for parents to engage in life review and meaning-making; is often displayed in the parents' home after the child's death, and parents take comfort in using these projects to continue their bond with their deceased child; can ameliorate parents' grief after their child's death; and may reduce healthcare providers' compassion fatigue and provide them an outlet for coping with their patients' deaths.
Participating in legacy artwork may result in self-reported positive outcomes for bereaved parents before and after their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.
约有 12%的癌症患儿无法幸存,这对患儿父母来说是毁灭性的损失。人们对改善患儿父母的应对方式和减轻悲伤的策略研究较少。虽然为绝症患儿及其家庭提供遗产制作服务已成为标准护理,但这些干预措施几乎没有得到实证关注。
本研究通过对在子女因癌症去世前与子女一起创作遗产艺术品的丧亲父母进行定性研究,探索其遗产制作和悲伤体验。
12 名丧亲父母和 12 名医疗保健提供者参与了个人半结构化访谈,访谈内容以悲伤的双重过程模型和延续纽带理论为指导。通过常规内容分析对定性数据进行分析。
出现了五个主题。遗产艺术品可以促进家庭联系,并为即将到来的孩子死亡打开沟通渠道;为父母提供参与生活回顾和寻找意义的机会;孩子去世后,这些作品通常会被父母展示在自己的家中,父母会通过这些项目获得安慰,继续与已故孩子保持联系;可以减轻父母在孩子去世后的悲伤;并可能减轻医疗保健提供者的同情疲劳,为他们提供应对患者死亡的出口。
在孩子去世前后,丧亲父母参与遗产制作可能会带来自我报告的积极结果,包括家庭联系、增强沟通、寻找意义和减轻悲伤。由于这些好处,儿童医院可能会考虑为癌症患儿及其家庭提供遗产制作服务。