Establishing the Cultural Equivalence of the Young Children's Participation and Environment Measure (YC-PEM) for Use in Singapore

Lim, Chun Yi; Law, Mary; Khetani, Mary; Pollock, Nancy; Rosenbaum, Peter

doi:10.3109/01942638.2015.1101044

Cited by 22 publications

(21 citation statements)

References 45 publications

(52 reference statements)

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“…The YC-PEM is now a recognized common data element for studies involving children with cerebral palsy and other neurological disorders [ 16 ]. Culturally adapted versions will increase instrument uptake in clinical research contexts [ 17 ] and afford for additional psychometric validation.…”

Section: Introductionmentioning

confidence: 99%

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

Khetani¹,

Lim²,

Corden³

2017

JMIR Rehabil Assist Technol

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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.

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Section: Introductionmentioning

confidence: 99%

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

Khetani¹,

Lim²,

Corden³

2017

JMIR Rehabil Assist Technol

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“…Furthermore, the YC-PEM was developed and initially validated for use within a North American context. Establishing the cultural equivalence of the YC-PEM (Lim et al, in press) may provide future opportunities for cross-cultural studies on disparities in young children’s participation, similar prior studies involving children and youth with disabilities (Ullenhag et al, 2012). Data for this study were obtained from parents who are typically not present in the daycare or preschool setting.…”

Section: Discussionmentioning

confidence: 99%

Participation in Early Childhood Educational Environments for Young Children with and Without Developmental Disabilities and Delays: A Mixed Methods Study

Benjamin

Lucas‐Thompson

Little

et al. 2016

Physical & Occupational Therapy In Pediatrics

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“…The Participation and Environment Measure Plus (PEM+) is a new electronic health tool that supports FCC by giving caregivers a way to help plan their child's care online. 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, 2015;Khetani et al, 2018;Khetani, Graham, Davies, Law, & Simeonsson, 2015;Lim, Law, Khetani, Pollock, & Rosenbaum, 2015). 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, 2015;Khetani, Lim, & Corden, 2017).…”

Section: Introductionmentioning

confidence: 99%

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

Bosak

Jarvis

Khetani

2019

Child

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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.

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Establishing the Cultural Equivalence of the Young Children's Participation and Environment Measure (YC-PEM) for Use in Singapore

Cited by 22 publications

References 45 publications

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

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

Participation in Early Childhood Educational Environments for Young Children with and Without Developmental Disabilities and Delays: A Mixed Methods Study

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

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