Leveraging Technology for Family-Centered and Participation-Focused Care Planning: A Feasibility and Pilot Study of Participation and Environment Measure-Plus (PEM+)

PURPOSE: Children’s participation in valued home, school, and community occupations is a key client-reported outcome and research priority in occupational therapy (American Occupational Therapy Association, 2014). Technology holds promise for customizing family-centered and participation-focused care in occupational therapy. This study evaluated the feasibility, acceptability, and preliminary effects of the Participation and Environment Measure-Plus (PEM+), a web-based care planning application that was designed with and for caregivers to support family-centered and participation-focused care (Jarvis et al., 2019; Khetani, Lim, & Corden, 2017).

DESIGN: This is a phase 1 single-arm pilot study involving a convenience sample of 22 caregivers of children aged 0–5 years receiving rehabilitation services (early intervention program or early childhood educational setting), who reported dissatisfaction with their child’s participation, had internet access, and could read and write English.

METHOD: Participants were provided unlimited access to PEM+ for two weeks to create participation-focused care plans for their child. Feasibility was assessed via retention rates, median completion time, and percentage of caregivers completing PEM+ independently. To assess acceptability and preliminary effects, participants completed the Usefulness, Satisfaction, and Ease of Use (USE) Questionnaire (Gao, Kortum, & Oswald, 2018) and two items on the impact of PEM+ on caregiver confidence to address their child’s participation. Descriptive statistics were used to report outcomes by total sample and by age groups, 0-3 and 4-5 years. Open-ended responses from the USE questionnaire were content analyzed by four research team members to organize feedback on PEM+ acceptability into categories. Pearson and Spearman’s correlations were used to ascertain associations between PEM+ acceptability and caregiver confidence.

RESULTS: Eighteen caregivers (82%) completed at least one iteration of PEM+. Median completion time was 13 minutes for the first iteration and decreased across subsequent iterations. Seventeen caregivers (94%) completed PEM+ independently. Mean acceptability ranged from 3.80-4.97 (SD 1.25-1.97), out of 7. Mean preliminary effects of PEM+ on caregiver confidence was 4.72 (SD 2.24) for “what I think can improve participation” and 4.61 (SD 1.85) for “what I will do next”, out of 7. Strong positive associations were found between PEM+ acceptability and caregiver confidence (i.e., usefulness, r=.785, p<.001; ease of use, r=.577, p<.01; satisfaction, r=.793, p<.001). Caregiver feedback fit into four categories: clarity of instructions and steps, perceived effort, perceived effects, and PEM+ features.

CONCLUSION: Results suggest that PEM+ is feasible for caregivers and has potential to be an acceptable, innovative option for improving caregiver confidence when creating participation-focused care plans in occupational therapy. Results informed PEM+ optimizations prior to undertaking a definitive Phase 2 efficacy trial. For occupational therapy practice, PEM+ could contribute as a powerful and innovative option for launching authentic occupational therapy services that are responsive to family priorities.

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

Gao, M., Kortum, P., & Oswald, F. (2018). Psychometric Evaluation of the USE ( Usefulness, Satisfaction, and Ease of use ) Questionnaire for Reliability and Validity. Proceedings of the Human Factors and Ergonomics Society Annual Meeting, 62(1), 1414–1418. https://doi.org/10.1177/1541931218621322

Jarvis, J. M., Gurga, A., Greif, A., Lim, H., Anaby, D., Teplicky, R., & Khetani, M. A. (2019). Usability of the participation and environment measure plus (PEM+) for client-centered and participation-focused care planning. American Journal of Occupational Therapy, 73, 1–8. https://doi.org/10.5014/ajot.2019.032235

Khetani, M. A., Lim, H. K., & Corden, M. E. (2017). Caregiver Input to Optimize the Design of a Pediatric Care Planning Guide for Rehabilitation: Descriptive Study. JMIR Rehabilitation and Assistive Technologies, 4(2), e10. https://doi.org/10.2196/rehab.7566