Caregiver Input to Optimize the Design of a Pediatric Care Planning Guide for Rehabilitation: Descriptive Study

Abstract

BackgroundCaregiver input has informed the design of a valid electronic patient-reported outcome (PRO) measure for use in pediatric rehabilitation. This proxy assessment may be further developed to expedite and enhance patient-centered care planning processes, but user input is first needed to finalize the core requirements that will guide its design.ObjectiveThe 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.MethodsA 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.ResultsHalf 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.ConclusionsResults informed revisions to the care planning guide before usability and feasibility testing of an initial Web-based prototype that is now underway.

Caregiver creation of participation‐focused care plans using Participation and Environment Measure Plus (PEM+), an electronic health tool for family‐centred care

“…Because PEM+ pulls information from a comprehensive and detailed caregiver assessment of environmental impact on participation in specific settings, it is possible that caregivers who completed PEM+ benefited from the structure and language of this environmental assessment to communicate their expertise about their child's context and aspects that are relevant to planning participation‐focused care for their child. Although the finding from this study about caregiver creation of environmentally focused care plans exceeds estimates from earlier phases of PEM+ testing whether by phone (Khetani et al, ) or online (Jarvis, Gurga, Grief, et al, ), it may be that time allowed (2 weeks and allowing for multiple iterations versus 30–45 min and allowing for one iteration) accounted for these differences. Regardless, results lend support for further PEM+ testing within the suite of evidence‐based and participation‐focused interventions as it may address what has been cited as the most resource intensive part of a participation‐focused intervention (Anaby et al, ).…”

“…These criteria were developed for this project and align with the current PEM+ stepwise process that is informed by provider and caregiver input (Khetani, ; Khetani et al, ). These criteria were finalized with feedback from key informants who are occupational therapists with clinical and research expertise on children's participation.…”

“…In its current form, caregivers of young children 0–5 years old first complete an assessment of their child's participation using the Young Children's Participation and Environment Measure (YC‐PEM) (Khetani, ; Khetani et al, ; Khetani, Graham, Davies, Law, & Simeonsson, ; Lim, Law, Khetani, Pollock, & Rosenbaum, ). Next, they proceed to PEM+, an electronic health tool that mimics the clinical reasoning that is commonly used to plan participation‐focused rehabilitation and results in a participation‐focused care plan (Khetani, Cliff, Schelly, Daunhauer, & Anaby, ; Khetani, Lim, & Corden, ). There is preliminary evidence of PEM+ feasibility, acceptability, and preliminary effects for improving caregiver confidence for care plan implementation (Jarvis et al, ; Khetani, Jarvis, Kaelin, Anaby, & Teplicky, ).…”

Caregiver dissatisfaction with their child’s participation in home activities after pediatric critical illness

“…These findings highlight the importance of engaging with families during their PICU stay to ascertain their individualized priorities regarding recovery of their child and family life. Electronic-health tools have shown promise in reinforcing family-centered care in pediatric rehabilitation [26][27][28] and warrant testing within this population.…”

Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned

“…For example, electronic portals for families is a HIT strategy that may help EI teams to efficiently capture data from families to design and monitor EI care plans that reflect family priorities [ 12 ]. Families currently contribute data on their priorities for improving their child’s functioning through an assessment process that is typically interview based [ 13 ], optional [ 14 ], and often burdensome to providers and families [ 15 ].…”