JMIR Publications

Background:

Participation and Environment Measure Plus (PEM+) is a guide that is compatible with the YC-PEM and may expedite care plan development and strengthen a patient’s engagement in discussions and decisions about their values, needs, and desires that shape meaningful care (ie, patient-centered care).

Objective:

The objective of this study was to examine the feasibility of a stepwise process for building on a baseline assessment of young children's participation in activities to develop a care plan relevant to pediatric rehabilitation.

Methods:

A cross-sectional descriptive study design was employed using qualitative methods. Data were collected via Web-based technology and by telephone. Twenty-five caregivers of young children (9 with developmental delays, 16 without delays) and between 1 and 7 years were recruited from a subsample of parents who had previously enrolled in a Web-based validation of a PRO on children’s participation and provided consent for future contact. Each caregiver completed a demographic questionnaire and Young Children’s Participation and Environment Measure (YC-PEM) online, followed by a 20- to 60-min semistructured and audiotaped phone interview to review and build upon PRO results as summarized in an electronic report. Interview data were content coded to the interview guide and reviewed by multiple research staff to estimate feasibility according to stepwise completion rates, perceptions of difficulty in step completion, and perceptions of overall utility.

Results:

Half of the participants in the final study sample (N=25) fully completed a stepwise process of building on their baseline PRO assessment to develop an initial care plan for their child. In most cases, similar stepwise completion rates and trends in the approaches taken for step completion were found regardless of the child’s disability status. However, more parents of children with disabilities reported difficulties in rank ordering their priorities for change and identified child-focused strategies for goal attainment. Nearly 77% (19/25) of users were willing to use the process to develop and communicate intervention priorities and strategies with professionals, family, and friends.

Conclusions:

Results informed revisions to the care planning guide before usability and feasibility testing of an initial Web-based prototype that is now underway.