Sophie Ribbers1,2, Julia Wager1,2, Almut Hartenstein-Pinter1,2, Boris Zernikow1,2, Mandira Reuther1,2. 1. Paediatric Palliative Care Centre and German Paediatric Pain Centre, Children's and Adolescents' Hospital Datteln, Witten/Herdecke University, Datteln, Germany. 2. Department of Children's Pain Therapy and Paediatric Palliative Care, School of Medicine, Faculty of Health, Witten/Herdecke University, Witten, Germany.
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.
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.
Authors: Dania Schuetze; Cornelia Ploeger; Michaela Hach; Hannah Seipp; Katrin Kuss; Stefan Bösner; Ferdinand M Gerlach; Marjan van den Akker; Antje Erler; Jennifer Engler Journal: Palliat Med Date: 2021-12-20 Impact factor: 4.762
Authors: Anna Santini; Irene Avagnina; Anna Marinetto; Valentina De Tommasi; Pierina Lazzarin; Giorgio Perilongo; Franca Benini Journal: Front Psychol Date: 2022-03-22