Parents’ Challenges and Needs after Inpatient Intensive Functional Rehabilitation Treatment of their Child with a Physical Disability

Abstract

Recent research showed that the disengagement of a child and family from an inpatient rehabilitation program to the home environment, can lead to a deterioration of the achieved improvements over time. In order to fathom why this occurs this study focused on the challenges parents face once their child returns home from an inpatient Functional Intensive Therapy program. A qualitative study was conducted (semi-structured indepth interviews) with parent couples (n=16) who’s child participated in an intensive inpatient rehabilitation program. The data collected from the interviews were analyzed with directed content analysis. The parents articulated challenges and needs once their child returned home: 1) Restricted knowledge about the child’s disability, 2) Coping with stress, 3) Empowering behavior regarding independent capabilities and 4) Parent roles and interactions between parents. Out of these challenges and needs several possibilities emerged for this functional intensive inpatient program that could prevent relapses in the long term: provide psychoeducation on disability from physical, cognitive and social emotional perspective, and increase capacities of parents to deal with stress or unburden parents by outsourcing stressful tasks, guide parents with emotional challenges and feelings of loss regarding the possibilities of their disabled child, help parents identify their pedagogic values and finally adapt one unified approach for more clarity for the child.

ARTICLE INFO ABSTRACT Recent research showed that the disengagement of a child and family from an in-patient rehabilitation program to the home environment, can lead to a deterioration of the achieved improvements over time. In order to fathom why this occurs this study focused on the challenges parents face once their child returns home from an inpatient Functional Intensive Therapy program. A qualitative study was conducted (semi-structured in-depth interviews) with parent couples (n=16) who's child participated in an intensive inpatient rehabilitation program. The data collected from the interviews were analyzed with directed content analysis. The parents articulated challenges and needs once their child returned home: 1) Restricted knowledge about the child's disability, 2) Coping with stress, 3) Empowering behavior regarding independent capabilities and 4) Parent roles and interactions between parents. Out of these challenges and needs several possibilities emerged for this functional intensive inpatient program that could prevent relapses in the long term: provide psycho-education on disability from physical, cognitive and social emotional perspective, and increase capacities of parents to deal with stress or unburden parents by outsourcing stressful tasks, guide parents with emotional challenges and feelings of loss regarding the possibilities of their disabled child, help parents identify their pedagogic values and finally adapt one unified approach for more clarity for the child.