This PhD project develops and tests a digital solution to support parents in children’s palliative care, enabling more systematic, responsive and equitable response to caregiver needs.
Children living with life threatening or life limiting conditions and their families have complex and changing needs. Parents often provide substantial, long-term care for their child, with a risk of reduced quality of life and poorer health.
More systematic assessment of parents’ needs can enable faster and more targeted actions, and increased support for families in children’s palliative care.
The goal is to provide more responsive and equitable health services. CHIP-DARE aim to develop a procedure for assessing and supporting parents’ needs in children’s palliative care through a digitally adapted CSNAT-I (peadiatric).
Participants
More about the project
This project will co-develop and adapt a digital intervention—the Paediatric Carer Support Needs Assessment Tool Intervention (CSNAT-I)—to assess and follow up parents’ support needs when their child is in palliative care.
Collaborating with parents, nurses, and other pediatric palliative professionals, the study will evaluate the intervention’s feasibility and track parents’ support needs over time. The aim is to help clinicians address parental needs more systematically, ensuring more equitable access to necessary health services and potentially improving the quality of life for both parents and the child.
Pediatric palliative care serves children with life-threatening or life-limiting conditions and requires comprehensive, family-centered support. Parents often shoulder long-term caregiving responsibilities that increase their own health risks; strengthening parents is therefore critical to optimal child care.
The project will include interviews with 8–10 parents and 4–8 clinicians, followed by a workshop to adapt CSNAT-I within an existing digital platform and co-create a clinical procedure.
Feasibility will be tested with 25 families over 12 months, assessing parents’ needs and their experiences with the intervention. The project highlights nurses as key leaders in tailoring digital interventions in pediatric palliative care and has strong potential for broader application in nursing practice.
Partner institutions
- Oslo University Hospital
- Lovisenberg Diaconal University College
- VID Specialized University
- LeveNå
- Akershus University Hospital
