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Published on: September 19, 2019
"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
Maile T Jones1, Elena Albanese2, Jessika C Boles1,2
1Monroe Carell Jr. Children's Hospital at Vanderbilt, Patient- and Family-Centered Care Department, Nashville, TN, USA.
Background:
Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known about how bereaved families perceive the concept of legacy that these practices are meant to address. Emerging research challenges the view of legacy as a standardized, handheld keepsake item but rather as a summation of qualities and experiences that affect those left behind. Therefore, more research is needed.
Aim:
To explore the legacy perceptions and experiences of bereaved parents/caregivers in an effort to inform legacy-oriented interventions in pediatric palliative care.
Design:
In this qualitative, phenomenological study grounded in social constructionist epistemology, bereaved parent/caregivers completed a semi-structured interview about their legacy perceptions and experiences. The interviews were audio-recorded, transcribed, and analyzed using an inductive, open coding approach grounded in psychological phenomenology.
Setting/Participants:
Participants were parents/caregivers and one adult sibling of children (ages 6 months-18 years) that died between 2000 and 2018 at a children's hospital in the Southeastern United States and spoke English as their primary language.
Results:
Sixteen parents/caregivers and one adult sibling were interviewed. Participants' responses converged across three themes: (1) definitions of legacy, including traits and characteristics, impacts on others, and the child's enduring presence; (2) manifestations of legacy, such as tangible items, experiences, traditions, and rituals, and altruism; and (3) factors perceived to affect legacy experiences, including characteristics of the child's death and one's personal grief process.
Conclusion:
Bereaved parents/caregivers define and experience their child's legacy in ways and manifestations that conflict with current legacy building interventions used in pediatric healthcare settings. Thus, an immediate shift from standardized legacy-oriented care to individualized assessment and intervention is needed to provide high-quality patient- and family-centered pediatric palliative care.
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