Healing the hearts of bereaved parents: Impact of legacy artwork on grief in parents whose children died of cancer

Abstract

Approximately 12% of youth with cancer do not survive, representing a devastating loss for parents. Strategies to improve parent coping have been understudied, and no studies have examined the impact of legacy-making interventions on bereaved parents’ grief. Though legacy-making activities are frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention in the literature. Furthermore, only one study exists on the impact of legacy-making interventions in pediatric populations. Thus, this study qualitatively explores the grief experiences of bereaved parents who have participated in legacy artwork with their child prior to his or her death from cancer. Twelve bereaved parents and 12 healthcare providers participated in individual semi-structured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Parents also completed the Prolonged Grief Disorder-13 (PG-13), Beck Depression Inventory-II (BDI-II), and the Life Attitude Profile-Revised (LAP-R). Quantitative data were analyzed via descriptive and test statistics, and qualitative data was analyzed via conventional content analysis. Five themes emerged from the interviews. Legacy artwork 1) allows for family bonding and opens lines of communication between family members regarding the child’s impending death, 2) provides opportunities for parents to engage in life-review and meaning-making of the child’s death, 3) is often displayed in parents’ homes and helps them continue their bond with their deceased child, 4) can ameliorate parents’ grief and psychosocial functioning following the death of their child, and 5) may reduce compassion fatigue and burnout among healthcare providers as well as provide an outlet for coping with the death of their patients. There were no significant differences in grief, depression, and attitude towards life between parents who participated in legacy artwork versus the comparison samples. These findings suggest that participating in legacy artwork interventions may result in self-reported positive outcomes for bereaved parents prior to and following their child’s death including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, pediatric palliative care programs may consider offering legacy artwork as an intervention for children with terminal illness and their families.