The impact of home-based physical rehabilitation program on parents' experience with children in palliative care: a qualitative study.

Abstract

Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms, it has been poorly researched to date. Since the family represents such a fundamental support in these cases, it is important to deepen our understanding regarding the value of implementing rehabilitation programs from the parents' perspective. The aim of this paper was to explore parents' experiences regarding the implementation of a physical rehabilitation program in pediatric palliative care. A qualitative methodology was chosen. The unit of pediatric palliative care at the Hospital Niño Jesús (Madrid, Spain). The inclusion criteria were: 1) parents of children, irrespective of their diagnosis; 2) integrated within the program of palliative care at the time of study; 3) aged between 0-18 years; 4) must be receiving Home-Based Rehabilitation Program by the Pediatric Palliative Care team. Fourteen parents were included. Purposeful sampling method was implemented. Data collection consisted of unstructured and semi-structured interviews. A thematic analysis was performed to interpret transcripts. Guidelines for conducting qualitative studies established by the Consolidated Criteria for Reporting Qualitative Research were followed. Three main themes were identified: 1) the meaning of physical rehabilitation to parents; 2) physical rehabilitation as an opportunity for patients to stay in their home environment; and 3) home-based physical rehabilitation as part of the families' social environment. The main needs of a home physical rehabilitation program are to decrease pain and suffering, together with improving family education and training. The experience of rehabilitation programs at home is essential in order to improve both the quality of life and the quality of care of affected children and parents.