Fysioterapeuten (Feb 2021)
Physiotherapy to children with neurodegenerative diseases in palliative care
Abstract
Purpose: To explore local physiotherapist’s thoughts and experiences about follow-up of children with neurodegenerative diseases in palliative care. Design: A qualitative study Material: Four municipally employed physiotherapist were recruited through parents to children with neurodegenerative diseases, registered at Frambu Resource Centre for Rare Disorders. Method: Semi-structured interviews Findings: In the analysis of the four semi-structured interviews, it emerged that the term palliative care for children was rarely used and not well known in the physiotherapists professional environment at the time the interviews were conducted. The informants described to have an important function in the children’s health care, starting before the diagnosis was confirmed, and continuing in the further palliative phases. The physiotherapist emphasized topics such as giving the child physical experiences, relation and relief. In the interdisciplinary health care collaboration, key points were guidance, collaboration within and between health care services and development of competence. Conclusion: The study shows that the informants apply an understanding of principles from palliative care in their professional practice. The results indicate that physiotherapists employed in the municipalities contributes in several ways to the multidisciplinary health care of children with neurodegenerative diseases in need of pediatric palliative care.
