When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories

Abstract

Background: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base. Method: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds. Results: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base.

Health Care Professionals' Experiences With Preloss Care in Pediatrics: Goals, Strategies, Obstacles, and Facilitators

“…Similarly, most developed bereavement interventions are aimed at supporting parents after the death of their child. 4,5,17 However, the importance of aiding parents in their coping with grief prior to their child's death is becoming more evident in research and in theories on loss and grief. 7,18,19 Theories emphasize that bereaved parents have to adjust to a 'new reality' where the child is physically absent.…”

“…In order to make this transition parents have to cope with several conflicting emotions, to eventually adjust their plans and integrate the loss in their autobiographical memory. 4,[20][21][22][23] An important aspect of this adjustment, that characterizes the process of bereavement, are two components of anticipatory grief; 7,24 preparedness and awareness time on the impending death. 25,26 Studies have shown that HCPs are able to positively influence parental preparedness by conducting end-of-life conversations, in which topics such as prognoses, future scenario's, and grief and loss are discussed.…”

“…These interventions mostly focus on bereavement care after child loss. 4,5 However, studies show that feelings of grief are felt by parents from diagnosis, throughout illness progression, and persist beyond the child's death. 6,7 HCPs experience a growing responsibility to aid parents in coping with experienced losses and feelings of grief during the end-of-life period.…”

Postponed Withholding: Balanced Decision-Making at the Margins of Viability

“…If the infant dies, there will be no decisional burden for the parents to bear. While in the NICU, memory-making will take place (pictures, visits from extended family, rituals at parental discretion), acknowledging the infant's place in the family narrative, all of which may lessen the burden of bereavement if the baby dies (Kochen et al 2020).…”

Metaphors that shape parents’ perceptions of effective communication with healthcare practitioners following child death: a qualitative UK study

“…When parents experience the death of a child, no matter the age, they experience a range of complex, often intolerably painful emotions [1]. The experience and effects of the death of a child on parents has received considerable attention, including the psychosocial impacts experienced as a consequence of devastating and enduring grief [2]; the experience of parents around end of life of a child [3][4][5]; what they want and expect from healthcare practitioners (HCPs) [2,6]; and impacts of bereavement services and interventions [1,7]. Less work has focused on the communication remembered by parents as part of their experiences of care or services received, or how that communication subsequently scaffolds their experience of bereavement.…”