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

Palliative Medicine 2020, Vol 34(3) (Editor's Choice)

Each month, one article from Palliative Medicine, the EAPC's official research journal, is selected as 'Editor's choice' and the author invited to contribute a short post to the EAPC blog explaining the background to the full article in the journal. This month's 'Editor's choice' is described below with access to the free PDF version.  (You can also read the blog post version here)

Abstract

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.

KEYWORDS:

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

View the full article here

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