Published on in Vol 8, No 1 (2022): Jan-Dec

Preprints (earlier versions) of this paper are available at, first published .
Identifying Parental Needs When Caring for a Child or Adolescent With Cancer: Participatory Design Study

Identifying Parental Needs When Caring for a Child or Adolescent With Cancer: Participatory Design Study

Identifying Parental Needs When Caring for a Child or Adolescent With Cancer: Participatory Design Study


1Hans Christian Andersen Children's Hospital, Odense University Hospital, Odense C, Denmark

2Department of Clinical Research, Health Sciences, University of Southern Denmark, Odense C, Denmark

3Centre for Innovative Medical Technology, Odense University Hospital, Odense C, Denmark

4Department of Paediatrics and Adolescent Medicine, Aarhus University Hospital, Aarhus N, Denmark

5Research Centre for Emergency Medicine, Emergency Department, Aarhus University Hospital, Aarhus N, Denmark

6Department of Clinical Medicine, Aarhus University, Aarhus C, Denmark

Corresponding Author:

Camilla Littau Nielsen, RN, MHS

Hans Christian Andersen Children's Hospital

Odense University Hospital

Kløvervænget 23C

Odense C, 5000


Phone: 45 27502561


Background: Survival possibilities among children and adolescents (referred to as “children”) with cancer have increased, resulting in more children and parents living with sequelae and psychological distress, respectively. Childhood cancer treatment is intensive and long term and affects the everyday life and functioning of the whole family, including daily and social life restrictions and hospitalizations, which force the parents to split up between the hospital and home to care for both the ill child and siblings and manage their jobs and homelife routines. Adequate parental coping strategies are essential for family adjustment and the child’s coping ability. Parenting a child with cancer, however, is challenging and stressful.

Objective: This study aimed to identify parental needs when caring for a child with cancer.

Methods: Using a participatory design approach, we generated data through field studies and semistructured interviews with parents of children receiving treatment at Odense or Aarhus University Hospital and focus group interviews with parents of children who have completed treatment within the past 2 years.

Results: The parents felt trapped in an endless, emotional roller-coaster ride of fear, hope, grief, and mental and emotional exhaustion and had very limited resources for self-care. The presence of support from peers, health care providers, and relatives was a facilitator of successfully coping with the illness. In contrast, full-time isolation in the hospital, due to COVID-19 restrictions, was a barrier and linked with feelings of loneliness. Loneliness was also experienced as navigating difficult emotions when responding differently from the spouse or not feeling understood by relatives.

Conclusions: Parents of children with cancer face many stressors that may become a psychological burden. New innovative approaches to provide psychosocial support, taking into account that the families are periodically isolated, are needed. For this goal, technological solutions may be useful and should be the focal point of this study’s experimental design phase.

iproc 2022;8(1):e41469



Conflicts of Interest

None declared.

Edited by B Dinesen; This is a non–peer-reviewed article. submitted 27.07.22; accepted 19.08.22; published 22.08.22


©Camilla Littau Nielsen, Jane Clemensen, Kristina Garne Holm, Claus Sixtus Jensen, Michael Thude Callesen. Originally published in Iproceedings (, 22.08.2022.

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