Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study

Title

Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study

Creator

Ribbers S; Wager J; Hartenstein-Pinter A; Zernikow B; Reuther M

Publisher

Palliative Medicine

Date

2019

Subject

caregiver; family; Palliative care; parents; patient-centered outcomes research; pediatric; qualitative research

Description

BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. AIM: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families. DESIGN: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis. SETTING: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted. RESULTS: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects. CONCLUSION: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

January 2020 List

Collection

Citation

Ribbers S; Wager J; Hartenstein-Pinter A; Zernikow B; Reuther M, “Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study,” Pediatric Palliative Care Library, accessed May 22, 2022, https://pedpalascnetlibrary.omeka.net/items/show/16874.

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