Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys

Abstract

BACKGROUND Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer‐related death. METHODS Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques. RESULTS Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high‐quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents. CONCLUSIONS Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2757–2765. © 2016 American Cancer Society.

The Importance of Parental Connectedness and Relationships With Healthcare Professionals in End-of-Life Care in the PICU*

“…Compassionate care from healthcare professionals for both the dying child and the family influences the perception of parents of their stay in an ICU and mitigates the stress they experience (1). It also affects the bereavement process, as memories of what happened in the PICU still comfort or distress them in the subsequent years (2)(3)(4).…”

“…Different studies from (mostly) the United States have investigated the needs of parents who lost their child in the PICU and their priorities and recommendations for end-of-life care (3,5). These studies made use of questionnaires with open-ended questions (5,6), focus groups (3,4,7), telephone interviews (8,9), and face-to-face interviews in the hospital (3). The time elapsed after the child's death varied between studies, and the majority of participating parents were mothers.…”

Bereaved Parents, Hope, and Realism

“…18 Parents previously have described their participation in collaborative activities to improve understanding of the patient and parent illness experience as a profoundly meaningful component to their child's legacy. 19,20 Bereaved parents on the steering council have personal, first-hand experience with tensions that arise when families and clinicians misinterpret one another's hopes in the setting of a child's approaching end of life. These parents wished to create a novel conceptual model to help patients with serious illness, families, and health care professionals better understand the phenomenon of simultaneously hoping for a cure and understanding prognostic gravity.…”

How I approach expressing condolences and longitudinal remembering to a family after the death of a child

“…Bereaved families depict a sense of displacement from their “medical home” and even a sense of losing the human connection of a caring medical team (some bereaved families remember their child's health care team as a medical family). Condolence messages serve the important reminder that a loved child and a grieving family are remembered …”

“…5 Bereaved parents identify the profound impact of receiving correspondence from a familiar care team member who personally knew their child. 5 In 2015, 15 evidence-based standards for the psychosocial care of children with cancer were published. 6 One of the standards is specific to the health care team contacting a family after a child's death.…”