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

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.

Opioid-Induced Respiratory Depression in Pediatric Palliative Care Patients with Severe Neurological Impairment—A Scoping Literature Review and Case Reports

“…Non-invasive capnography potentially detects respiratory depression in children and adults earlier than pulse oximetry [ 46 , 47 , 48 ]. However, an additional nasal cannula/face mask may not be suitable for the palliative care setting, where normalcy is a recurrent wish voiced by families [ 49 ]. Thus, monitoring respiratory rate changes probably provides the greatest predictability of imminent respiratory depression and failure [ 20 ].…”

Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis—A multicenter prospective study

“…and M.R. The wording of the items was inspired by the language used by parents and professional caregivers in the interviews conducted by Ribbers et al 17 A total of 67 items were generated.…”

“…Thus, both the original and the translated version of the African C-POS may not be applicable to children with congenital and neurological disorders, who constitute the largest patient group in developed countries for children younger than 16 years. 8 Based on a previous study that identified relevant aspects of pediatric palliative care for children with severe neurological impairment and their families, 17 this study aims to develop and validate a multidimensional familycentered outcome measure for this population. A parent and professional caregiver version will be created.…”

“…Based on a previous study that identified relevant aspects of pediatric palliative care for children with severe neurological impairment and their families, 17 this study aims to develop and validate a multidimensional family-centered outcome measure for this population. A parent and professional caregiver version will be created.…”

Paediatric palliative care research has come of age

“…Children with severe neurological impairment and their families have substantial palliative care needs and yet are the subject of very little research. In this issue, Reuther and colleagues 8 make a notable contribution by identifying six core domains of paediatric palliative care for these families, including symptom control, as commonly seen in other populations.…”