ORIGINAL ARTICLE   Free

European Journal of Physical and Rehabilitation Medicine 2019 August;55(4):494-504

DOI: 10.23736/S1973-9087.19.05474-1

Copyright © 2019 EDIZIONI MINERVA MEDICA

lingua: Inglese

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

Patricia RICO-MENA ¹, Domingo PALACIOS-CEÑA ^{2, 3} ✉, Ricardo MARTINO-ALBA ⁴, Lourdes CHOCARRO-GONZALEZ ⁴, Javier GÜEITA-RODRÍGUEZ ^{2, 3}

¹ Department of Physiotherapy, Podology and Dance, European University of Madrid, Madrid, Spain; ² Department of Physiotherapy, Occupational Therapy, Rehabilitation, and Physical Medicine, Rey Juan Carlos University, Madrid, Spain; ³ Group of Humanities and Qualitative Research in Health Science of Univesidad Rey Juan Carlos (Hum&QRinHS), Madrid, Spain; ⁴ Unit of Pediatric Palliative Care, Niño Jesús Pediatric University Hospital, Madrid, Spain

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.

KEY WORDS: Rehabilitation; Palliative Care; Child; Qualitative research; Home Care Services