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

Abstract

Background Family‐centred care (FCC) is a model for rehabilitation practice that focuses on collaborative partnerships between providers and clients (i.e., children and their caregivers). FCC is a best‐practice standard and is expected to yield better outcomes for children and greater caregiver satisfaction with rehabilitation services. A commonly cited barrier to implementing FCC is perceptions about caregiver capability to contribute to designing an initial plan of care, due to lack of skill and/or interest. Objectives The aim of this study is to address FCC barriers through three objectives: (a) report the proportion of caregivers that created multiple care plans using PEM+, an electronic health tool, (b) assess the proportion of caregivers that created complete and participation‐focused care plan(s) and that exceeded criteria of a complete plan, and (c) describe characteristics of caregivers that did not create a complete care plan. Methods Study objectives were addressed via secondary analyses of a subset of data from the PEM + pilot trial. Participants were caregivers (N = 18) of children with developmental disabilities (aged 0–5 years) receiving rehabilitation services in an early childhood programme. A deductive analytic approach was used to code care plan content to criteria and to determine proportion of caregivers with a complete and participation‐focused care plan and those that exceeded the criteria. Results Multiple care plans were created by 72% of the caregivers, 83% caregivers created at least one care plan that was complete and participation‐focused per criteria, and 83% exceeded the criteria. Conclusion The high occurrence of caregivers who developed multiple care plans and who developed high‐quality care plans, in their completeness and participation‐focused features, suggests that caregivers are interested and capable of participating in a collaborative goal setting process when using PEM+. This indicates that FCC is feasible to implement in clinical workflow with the use of an electronic health tool, which may better facilitate such care. PEM+ warrants further efficacy testing prior to implementation.

Artificial Intelligence in Rehabilitation Targeting the Participation of Children and Youth With Disabilities: Scoping Review

“…In rehabilitation, goal-setting has become an integral part of the therapy process across professions, including pediatric participation–focused interventions [ 133 , 134 ]. Previous research has shown that caregivers can be guided to create participation-focused goals on the web [ 149 ]. Including goal-setting in AI-supported pediatric rehabilitation interventions might be an important first step to enable tailoring interventions to the participation needs of children and youth with disabilities or other diagnosed health conditions.…”

Effectiveness and scalability of an electronic patient-reported outcome measure and decision support tool for family-centred and participation-focused early intervention: PROSPECT hybrid type 1 trial protocol

“…We will rate EI service plans using quality rating criteria, 16 54 to derive estimates of the proportion of participation-focused goals before and after intervention. We will control for history of family interview completion (yes, no) to examine the effect of the upgraded YC-PEM e-PRO and decision support tool on the proportion of participation-focused goals in the EI service plan.…”

“…The information in this report can integrate with standardised processes used to facilitate IFSP meetings, thereby helping to further structure provider-parent communication around intervention priorities and goal attainment strategies. [16][17][18][19] The YC-PEM e-PRO holds promise in improving EI service quality in two ways: (1) expediting and expanding EI provider reach for family-centred and participationfocused service design in partnership with individual families; and (2) aggregating the YC-PEM e-PRO data to examine trends in participation over time as a function of EI service use for groups of families. 13 20 21 It is therefore a promising electronic health systems intervention to strengthen the parent-practitioner relationship and equip programmes with a common data element for conducting robust patient-centred outcomes research to drive quality improvement efforts.…”

“…The information in this report can integrate with standardised processes used to facilitate IFSP meetings, thereby helping to further structure provider–parent communication around intervention priorities and goal attainment strategies. 16–19 …”

Family‐centred care in early intervention: A systematic review of the processes and outcomes of family‐centred care and impacting factors

“…The subtheme service coordination, organization and structure emphasized the importance of activities such as responding to initial concerns (Robinshaw & Evans, 2001), accessible supports and resources (Chong et al, 2012) and coordinated care (Nickbakht et al, 2019). Care planning and goal setting revealed the importance of formal administrative processes such as Individualized Family Service Plans (IFSPs) (Bosak et al, 2019) and clear guidelines/ protocols (Carter & Thomas, 2011) in the provision of FCC, especially in newer publications. Similarly, Routines-Based Interviewing was employed as a means of setting functional and meaningful child and family goals (Ridgley et al, 2020).…”