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

Abstract

Background: 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. Aim: The aim of this paper was to explore parents' experiences regarding the implementation of a physical rehabilitation program in pediatric palliative care. Design: A qualitative methodology was chosen. Setting: The unit of pediatric palliative care at the Hospital Niño Jesús (Madrid, Spain). Population: 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. Methods: 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. Results: 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. Conclusions: The main needs of a home physical rehabilitation program are to decrease pain and suffering, together with improving family education and training. Clinical rehabilitation impact: 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.