Enhancing Collaboration Regarding Long-Term Therapy Planning for Children with Chronic Conditions Using Participatory Action Research

Children with chronic conditions often participate in therapy, but there is little information about how often or for how long therapy services should be provided. Participatory action research (PAR) methods were utilized in this study and, therefore, involved both parents and occupational and physical therapists throughout the study. Parental interviews were conducted to understand parent perception of self-management and how parents felt their child’s therapist was doing or could do to facilitate self-management, particularly as it related to discharge planning or having their child take a break from ongoing therapy. Through analysis of parent interviews completed by the therapist team and additional parent feedback on priorities for change, there were several concerns parents identified as being important to them when thinking about long-term therapy planning. A shared decision making tool and supporting documents were subsequently developed and tested as a method for enhancing collaborative conversations between the parent and therapist regarding a long-term therapy plan for the child. During follow-up parent interviews, parents were able to clearly voice long-term goals or a long-term plan for their child’s therapy, and they had a more positive reaction to the idea of taking a break from ongoing therapy services. Use of PAR methodology in this study was effective in allowing parents and therapists to co-create a change that both parents and therapists identified as an improvement (during follow-up interviews with parents and a focus group with therapists)