Date Presented 4/16/2015
This descriptive study was undertaken to obtain parent input about a provider-informed process for leveraging Participation and Environment Measure for Children and Youth (PEM–CY) results to facilitate collaborative care planning between parents of children and youths with disabilities and their occupational therapy providers.
SIGNIFICANCE: Children’s participation in home, school, and community occupations is a key goal of pediatric occupational therapy. The Participation and Environment Measure for Children and Youth (PEM–CY) elicits parental expertise about (1) their child’s participation in activities within home, school, and community settings and (2) perceived environmental supports and barriers to participation in each setting. The PEM–CY is valid for use in large sample research and may hold utility for effective and efficient intervention planning.
INNOVATION: The PEM–CY combines assessment of children’s participation and environment in the same measure. This unique feature provides an opportunity to develop a child-focused or environmentally focused intervention plan for improving participation level outcomes. Our prior work with providers suggested a programmable four-step decisional process for leveraging PEM–CY results to develop care plans. In this study, we seek parent input to evaluate the credibility of this process prior to validation.
METHOD: The research question for this study was as follows: What are parents’ perspectives of a provider-informed process for intervention planning when using the PEM–CY? We used a descriptive study with qualitative methods, and participants completed the PEM–CY via electronic download. We then conducted a follow-up, semistructured phone interview.
We used a purposive maximum variation sampling strategy to recruit diverse participants from five local and national organizations who met the following four criteria: (1) primary caregiver of a child with a disability between 12 and 17 yr, (2) aged 18 yr or older, (3) Internet access, and (4) English fluency.
Parents completed the PEM–CY via electronic download and shared their automated summary reports with research staff during a 30- to 90-min follow-up phone interview using a semistructured interview guide that was informed by prior research with providers and that underwent investigator review and a pilot test prior to data collection.
Each interview was audio recorded, transcribed verbatim, cross-checked for accuracy, and content coded to the interview guide using NVivo Version 10.0. A Phase 1 coding report consisting of emergent themes and exemplars was reviewed by the interviewer and coder for accuracy. The interview guide was then revised in preparation for Phase 2. One Phase 1 transcript was chosen at random for external audit to ensure adherence to the interview guide.
RESULTS: Eight Phase 1 participants (mean age = 46.5 yr) of children with disabilities (mean age = 14 yr; n = 4 with autism spectrum disorder [ASD]) enrolled between July 2013 and March 2014. Each participant set a participation goal and action plan using his or her PEM–CY report and described the decisional process as follows: (1) clear, concrete, specific, and efficient; (2) supportive of parent-provider collaboration; and (3) helpful for initiating challenging conversations about their child. Participants struggled to (1) prioritize areas for intervention by rank ordering, depending on the setting and/or the number of activities listed; (2) seek their child’s input as a necessary and/or feasible step; and (3) articulate how to address environmental factors in their care plans.
CONCLUSION: Phase 2 data collection is underway (to date, n = 4) to explore options for prioritizing intervention targets, obtaining child input, and generating prompts to better guide parents in devising environmentally focused intervention strategies. Results will inform Phase 3 member checking using a web-based prototype.
