Translation and Validation of the CSNAT Paediatric Tool to Identify Parents' Support Needs When Caring for Children with Life-Limiting Conditions

This project aims to translate the tool (CSNAT-P) into Swedish and to examine its content validity from the perspectives of both parents of children with life-limiting conditions and registered nurses.

In the Nordic countries, approximately 41,200 children live with a health condition that may shorten their lives. All children with a life-limiting, life-threatening or life-shortening diagnosis have the right to paediatric palliative care. According to the World Health Organization, this care should not only address the child's physical, psychological, social and existential needs — it should also provide support to the whole family. Caring for a child with a life-limiting illness places an enormous burden on the entire family. Parents frequently take on responsibility for advanced care tasks in the home that were previously managed in hospital, such as administering medication, operating medical equipment, managing sleepless nights and making difficult decisions regarding their child's care. Research indicates that parents in this situation commonly experience high levels of stress, anxiety and reduced quality of life, and that the need for both emotional and practical support is considerable.

The Carer Support Needs Assessment Tool Intervention (CSNAT-I) is a two-part intervention comprising an evidence-based assessment tool (CSNAT) integrated within a five-step person-centred process. The CSNAT tool has been validated and developed to identify and address the individual support needs of family caregivers of adults with life-threatening illness. The tool (v3.0) consists of 15 domains, framed as direct questions, covering practical, emotional, existential and social support needs. The CSNAT intervention is built around a structured conversation between family caregivers and healthcare professionals regarding support needs, from which an action plan is developed, followed up and revised over time. A paediatric version of the assessment tool (CSNAT-P), comprising 16 questions, has been adapted for use with parents caring for children with life-limiting illness. The CSNAT-P has been tested with promising results in Australia and the United Kingdom; however, a Swedish version adapted for parents within a Swedish paediatric palliative care context does not yet exist.