Pilot Implementation of an Electronic Participation and Environment Measure for Family-Centered and Participation-Focused Early Intervention

PURPOSE: In early intervention (EI) settings, children’s participation in valued occupations and family engagement are considered essential in occupational therapy practice (American Occupational Therapy Association, 2014), yet there is need for evidence about ways to best support information exchange for shared decision-making about a child’s participation to effectively launch the occupational therapy process when designing an individualized family service plan as part of an interprofessional team (Boland et al., 2019; Hanna & Rodger, 2002). The Young Children’s Participation and Environment Measure (YC-PEM) is a valid electronic client-reported outcome measure that caregivers can use to evaluate their young child’s participation in valued occupations within the home (e.g., mealtime with family), pre-school/daycare (e.g., socializing with classmates during snack), and community (e.g., dining out at a restaurant; Khetani, Graham, Davies, Law, & Simeonsson, 2015). It is designed to support family engagement when planning and monitoring participation-focused outcomes in EI. The purpose of this study is to estimate the feasibility, acceptability, and value of implementing the electronic version of the YC-PEM in EI, from the perspective of caregivers.

DESIGN: This is a single-arm, non-randomized pilot implementation trial. Participants were primary caregivers (n=139), the target end users when implementing YC-PEM in an EI program. Participants were recruited from a large, urban EI program. They were approached the month prior to the child’s annual evaluation of progress. Caregivers were included if they were at least 18 years old; could read, write, and speak English; had internet access; and had a child between 0-3 years old who had been in EI for at least 3 months.

METHOD: The feasibility of implementing the electronic version of YC-PEM within EI was assessed via web analytic data on enrollment, study retention, mean completion, and mean completion time. Chi-square tests were used to examine caregiver perceptions of YC-PEM acceptability by caregiver education and family income. To inform intervention and protocol optimizations, caregiver feedback via open-ended responses were content coded. The value of implementing YC-PEM was estimated via composite and item-level scores of the YC-PEM results to capture the extent of participation difficulty in home and community occupations, and common areas of need regarding caregivers desired change in their child’s participation.

RESULTS: Successful feasibility of implementing the electronic version of YC-PEM in routine EI care was demonstrated by an 80% completion rate. More than half of the participants reported that the completion of the YC-PEM was at least somewhat helpful, regardless of family income or caregiver education, providing support for its acceptability. Caregivers feedback was on the relevance, wording and structure of the YC-PEM. As for its value, the YC-PEM results were viewed via an online report by 64% of caregivers, whose desire for change most often pertained to the child’s participation in non-discretionary occupations at home and structured occupations in the community.

CONCLUSION: Results provide preliminary support for the implementation of YC-PEM for engaging families in planning participation-focused services in EI. Results also inform select intervention and protocol optimizations prior to undertaking a multi-site pragmatic trial of its effectiveness on family engagement and shared decision-making within an interprofessional EI clinical workflow. For occupational therapy practice, implementing the electronic version of YC-PEM in EI could be a powerful way to reinforce the profession’s values of delivering participation-focused and family-centered practice.

References

American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68 (Suppl. 1), S1–S48. http://dx.doi.org/10.5014/ajot.2014.682006

Boland, L., Graham, I. D., Légaré, F., Lewis, K., Jull, J., Shephard, A., … Stacey, D. (2019). Barriers and facilitators of pediatric shared decision-making: A systematic review. Implementation Science, 14(1). https://doi.org/10.1186/s13012-018-0851-5

Hanna, K., & Rodger, S. (2002). Towards family-centred practice in paediatric occupational therapy: A review of the literature on parent-therapist collaboration. Australian Occupational Therapy Journal, 49(1), 14–24. https://doi.org/10.1046/j.0045-0766.2001.00273.x

Khetani, M. A., Graham, J. E., Davies, P. L., Law, M. C., & Simeonsson, R. J. (2015). Psychometric Properties of the Young Children’s Participation and Environment Measure. Archives of Physical Medicine and Rehabilitation, 96(2), 307–316. https://doi.org/10.1016/j.apmr.2014.09.031