Date Presented 04/04/19
This research study sought to understand parent perspectives on their child’s long-term therapy needs. This study utilized participatory action research (PAR). A shared decision-making tool was developed and tested as a method for enhancing collaborative conversations between the parent and therapist about a long-term therapy plan. Use of PAR was effective in allowing parents and therapists to cocreate a change regarding long-term therapy planning for children with chronic conditions.
Primary Author and Speaker: Victoria McQuiddy
Contributing Authors: Kristin Winston, Sonia Kay, Terrianne Jones
PURPOSE: There are no guidelines established regarding the frequency and duration of pediatric occupational therapy services. There is wide variation in the frequency and duration of occupational therapy services for children (Gee et al., 2016). Due to the limited information on the appropriate dose of occupational therapy as well as the nature of chronic conditions impacting the child throughout his/her lifetime, determining the appropriate time to discharge or discontinue occupational therapy intervention is difficult.
DESIGN: This study utilized participatory action research (PAR) methods, and therefore involved both parents and occupational and physical therapists throughout the study. When used in a healthcare setting, PAR involves key stakeholders to generate solutions to practical issues, for the ultimate goal of co-creating a change to improve patient care (Williamson, Bellman, & Webster, 2011).
METHOD: Parents and therapists were involved in various activities throughout this study given the use of PAR methodology. Parent interviews were conducted to understand parent perception of self-management, particularly as it related to follow through with therapy home program activities and having their child take a break from ongoing therapy. A change was implemented based on the results of the initial parent interviews. To evaluate the impact of the change, another round of parent interviews were conducted and therapists participated in a focus group. The book Qualitative Data Analysis: A Methods Sourcebook (Miles, Huberman, & Saldana, 2014) was utilized to develop the data analysis plan including coding and developing patterns, clusters, and themes, and planning from the data.
RESULTS: During the initial parent interviews, six themes were identified including complex role of the parent of a child with special needs, uncertainty about the future, parent and child relationship with the therapist, value of therapy sessions, follow through with therapy home program activities, and factors influencing parent desire to take a break from therapy. Given the variety of concerns reported by parents during interviews, a shared decision making tool was created. The shared decision making tool was subsequently 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, three themes were identified including long term planning, relationship with therapist, and considerations for taking a break from therapy. During follow-up interviews, all parents reported knowing what their long term goals and plan for therapy were for their child and reported a different experience in feeling like their therapist discussed a long term therapy plan for their child with them. Parents also did not have the negative reaction when discussing a break from therapy that was common during the first round of parent interviews. Therapists reported positive reactions to using the tool to discuss a long term plan for a child’s therapy during routine therapy appointments.
CONCLUSION: Use of PAR methodology in this study was effective in allowing parents and therapists to co-create a change (the shared decision making tool) that both parents and therapists identified as an improvement (during follow-up interviews with parents and a focus group with therapists).
IMPACT STATEMENT: Developing a long term plan for therapy including breaks from ongoing therapy for children with chronic conditions is complex. The shared decision making tool and supporting documents were found to be helpful for having collaborative conversations about a long term therapy plan for children with chronic conditions during this study.
References
Gee, B.M., Lloyd, K., Devine, N., Tyrrell, E., Evans, T., Hill, R., . . . Magalogo, K. (2016). Dosage Parameters in Pediatric Outcome Studies Reported in 9 Peer-Reviewed Occupational Therapy Journals from 2008 to 2014: A Content Analysis. Rehabilitation Research and Practice (2016), 1-14. http://dx.doi.org/10.1155/2016/3580789
Williamson, G. R., Bellman, L., & Webster, J. (2011). Action research in nursing and healthcare. Thousand Oaks, CA: Sage Publishing.
Miles, M. B., Huberman, A. M., & Saldana, J. (2014). Qualitative Data Analysis: A Methods Sourcebook (3rd Edition). Thousand Oaks, CA: Sage Publications.
