Michelle Phoenix

• PhD
• Professor (Assistant) at McMaster University

Purpose: A family-centered approach to developmental rehabilitation services emphasizes that children grow and develop in their family environment, and that parents are an integral part of therapy. The purpose of this study was to develop a theory of how parents attend, participate and engage in their child’s developmental rehabilitation services....

Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation s...

Plain English summary In Canada, and internationally, there is an increased demand for patient engagement in health care research. Patients are being involved throughout the research process in a variety of roles that extend beyond the traditional passive participant role. These practices, referred to collectively as ‘patient engagement’, have rais...

Introduction: Several concepts – risk, resilience, disability and hard-to-reach families in early intervention services – are talked and written about in many ways. Family Stress Theory can be usefully applied to explore these issues systematically. Problem: The relationship between risk and disability is complex, and the role of resilience is not...

Background: Client-centredness is a central theme within occupational therapy; however, its application within clinical practice has not been thoroughly examined within the literature. Aim: The aim of this practice reflection is to provide a critical perspective on client-centredness in occupational therapy practice with children. Methods: Two acti...

Background Article 23 of the United Nations Convention on the Rights of the Child states that children with disabilities must have access to education. This includes ensuring access to high‐quality, affordable and inclusive childcare services that are specifically tailored to meet the unique needs of young children with disabilities. However, littl...

Purpose: To systematically review the literature on the use of computer-mediated communication (CMC) for social participation by adolescents with acquired brain injury (ABI), characterize patterns of use, perceived benefits and challenges, and existing supports for this population. Methods: Following PRISMA guidelines, we searched seven database...

The high prevalence of trauma world-wide is such that speech-language pathologists are likely to support clients across the lifespan with experiences of trauma, such as abuse, neglect, intergenerational and racial trauma, and exposure to structural and systemic violence. Trauma can affect peoples’ neurobiology and can also impact cognitive, social,...

Scope This study describes the high and low points of caregiver and clinician experiences with pediatric telerehabilitation with consideration for the sustainable adoption of pediatric telerehabilitation beyond the COVID-19 pandemic context. Methods As part of a larger study, this project analyzed data from qualitative interviews to describe careg...

Introduction Evidence-informed practice (EIP) is a widely accepted approach to providing rehabilitation services, however there are barriers to implementation. Bright Ideas is an innovative program developed by KidsAbility’s Rocket Discovery Centre, aiming enhance uptake of EIP through incubating ideas identified by KidsAbility staff linked to orga...

Purpose: To describe the use of telehealth by school-based health service providers.Methods: We searched five academic databases, followed by a manual search of the reference lists of included articles. Our inclusion criteria required that articles be peer-reviewed, in English, involve use of telehealth by a health professional, and integrate servi...

This multi-methods study describes the development of a pediatric rehabilitation telehealth intervention fidelity checklist, estimates its inter-rater reliability, and documents raters' implementation experience. A literature scan and expert consultation identified eighteen key behaviors and categorized them into three subdomains, measured using a...

Background Cocreation has the potential to engage people with lived and living experiences in the design and evaluation of health and social services. However, guidance is needed to better include people from equity‐deserving groups (EDGs), who are more likely to face barriers to participation, experience ongoing or historical harm, and benefit fro...

Background Co-creation approaches, such as co-design and co-production, aspire to power-sharing and collaboration between service providers and service users, recognising the specific insights each group can provide to improve health and other public services. However, an intentional focus on equity-based approaches grounded in lived experience and...

Introduction Prior to the COVID-19 pandemic, children's therapy appointments provided by Ontario's publicly-funded Children's Treatment Centre (CTCs) primarily occurred in-person. With COVID-19 restrictions, CTCs offered services via telerehabilitation (e.g., video, phone), which remains a part of service delivery. CTC data shows that families expe...

Purpose: To describe parent, child, and service providers' use of metaphors to communicate the meaning of participation in life and therapy engagement in the field of childhood disability.Methods: Metaphors concerning participation and engagement were extracted from 59 qualitative articles recommended by a group of experts in pediatric rehabilitati...

Background: Practitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children's Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-reported outcome measure that was designed with and for caregivers for research and practice. This study examined historically min...

There is an increased interest from both researchers and knowledge users to partner in research to generate meaningful research ideas, implement research projects, and disseminate research findings. There is accumulating research evidence to suggest the benefits of engaging children/youth with disabilities and their parents/families in research par...

Background In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully. Videos...

This study assessed implementation of the Computer-based Instrument for Low-motor Language Testing (C-BiLLT). The C-BiLLT is an accessible language comprehension assessment tool originally developed for children with cerebral palsy and complex communication needs. The purpose of the current study was to understand the clinical contexts in which the...

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams s...

Policy-makers in two Canadian provinces invited CanChild to consult on developmental services for children and their families. This consultation involved jurisdictional and scoping reviews, interviews with stakeholders, and solicitation of expert recommendations.

Purpose: This study aimed to 1) investigate the convergent and discriminant validity, internal consistency, and test-retest reliability of the Canadian English version of the Computer-Based instrument for Low motor Language Testing (C-BiLLT-CAN), and 2) explore feasibility of the C-BiLLT assessment for children with cerebral palsy (CP) and complex...

Background It is challenging to reliably assess the language comprehension of children with severe motor and speech impairments using traditional assessment tools. The Computer Based instrument for Low motor Language Testing (C-BiLLT) aims to reduce barriers to evidence-based assessment for this population by allowing children to access the test us...

Plain English summary Researchers, patients, and families who collaborate in childhood disability research can benefit from training on how to engage with each other authentically and meaningfully, i.e., where all parties feel supported and valued. We used a codesign approach to identify aspects of the research process where challenges might arise...

Having the choice to access rehabilitation services is a right of disabled children. In Ontario, Canada, paediatric rehabilitation services are provided by Children's Treatment Centres (CTCs), and many manage missed appointments using discharge policies. The impact of discharge policies on access to rehabilitation services is unknown. This study cr...

Purpose Parent-implemented early communication interventions are commonly delivered to culturally and linguistically diverse families. Although there is evidence from fields such as public health or psychology, there is little guidance regarding what elements to culturally adapt for parent-implemented speech-language pathology interventions. This s...

BACKGROUND Children with disability face long wait times for rehabilitation services. Prior to the pandemic, telehealth adoption was low across most rehabilitation settings, including pediatrics. As a result of the pandemic restrictions, pediatric therapists were asked to rapidly shift to using telehealth without previous experience and often minim...

Background: Children with disability face long wait times for rehabilitation services. Before the COVID-19 pandemic, telehealth adoption was low across pediatric rehabilitation. Owing to the COVID-19 pandemic restrictions, pediatric therapists were asked to rapidly shift to telehealth, often with minimal training. To facilitate the behavior change...

Purpose: This review aimed to synthesize knowledge about multi-criteria decision analysis methods for supporting rehabilitation service design and delivery decisions, including: (1) describing the use of these methods within rehabilitation, (2) identifying decision types that can be supported by these methods, (3) describing client and family invo...

Within the last decade, stakeholder engagement in research has become increasingly popular in childhood disability research however, literature on the engagement of youth with neurodisabilities and their families in evidence syntheses is underdeveloped. Involving patients as partners in research has the potential to improve applicability and releva...

Introduction The International Classification of Functioning, Disability and Health (ICF) was launched 20 years ago by the World Health Organization. Over the past two decades, the ICF has informed and revolutionized how jurisdictions deliver services: e.g., the Federal Participation Act in Germany, the National Disability Insurance Scheme in Austr...

This invited review introduces the principles of qualitative health research (QHR) to the fields of developmental medicine and child neurology to facilitate the conduct of applied qualitative research. It provides practical guidance on how to write a study purpose statement aligned with the foci of QHR and then articulate an overarching research qu...

Background Parents of children with disabilities often report stress, depression, and anxiety. This review identified screening tools and practices that pediatric rehabilitation service providers can use to screen the mental health of parents of children with disabilities Methods An interdisciplinary team and patient partner completed the systemat...

Plain English summary More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster Universit...

Hemiplegic cerebral palsy (CP), the most common subtype, is characterized by high levels of mobility. Despite this, children with hemiplegic CP can face challenges functioning in and adapting to situations of everyday life. The purpose of this cross-sectional study (Hemi-NET database) was to identify factors associated with adaptive behaviour in 59...

Participation of children in rehabilitation services is associated with positive functional and developmental outcomes for children with disabilities. Participation in therapy is at risk when the personal and environmental contexts of a child create barriers to accessing services. The International Classification of Functioning, Disability and Heal...

The World Health Organization's International Classification of Functioning, Disability and Health recognizes that environmental factors impact well-being and life participation for children with disabilities. A primary environment in which children grow and learn is the family. The importance of family has long been recognized in family-centered p...

Background: Knowledge translation (KT) can be challenging to do effectively. Capturing the progress of KT activities and their impact is critical, but few resources exist for research organizations to systematically evaluate these. A status update was completed to understand the progress of KT at a childhood disability research centre five years af...

Purpose To explore engagement principles and contextual conditions in high-engagement therapy sessions involving youth with disabilities and service providers. Method From a larger project on therapy engagement, a dyadic case analysis was conducted involving three youth ages 8–15 with disabilities and their service providers. Participants were int...

Introduction Mild motor difficulties in children are underdiagnosed despite being highly prevalent, leaving such children often underserved and at higher risk for secondary consequences such as cardiovascular disease and anxiety. Evidence suggests that early patient-oriented interventions, coaching parents and providing children with early stimulat...

Rehabilitation services in education settings are evolving from pull-out interventions focused on remediation for children and youth with special education needs to inclusive whole-school tiered approaches focused on participation. A limited number of discipline-specific practice models for tiered services currently exist. However, there is a pauci...

Background Educators and health professionals support the learning and participation of diverse children in school environments. Tiered approaches to service delivery may assist these efforts through consideration of universal supports that are useful to all children, targeted supports for some children, and individualized supports for the smallest...

Purpose To examine the psychometric properties of a parent-report measure of engagement in pediatric rehabilitation. Method 113 parents (of children 4 months to 18 years, varying in diagnoses) were recruited from standard outpatient/inpatient, early intervention, and life skills programs, sampled from different sites in Canada, the US, and Austral...

Background: Co-design is an approach to engaging stakeholders in health and social system change that is rapidly gaining traction, yet there are also questions about the extent to which there is meaningful engagement of structurally vulnerable communities and whether co-design leads to lasting system change. The McMaster University Co-Design Hub wi...

'Codesign' and associated terms such as 'coproduction' or 'patient engagement', are increasingly common in the health research literature, due to an increased emphasis on the importance of ensuring that research related to service/systems development is meaningful to end-users. However, there continues to be a lack of clarity regarding the key prin...

Purpose: We completed a scoping review to: (1) identify strategies that have been used to engage hard-to-reach populations in childhood disability research, and (2) synthesize information as to whether and how these strategies were evaluated. Methods: Systematic search of six electronic databases and grey literature to identify articles published i...

Purpose: To investigate client (youth/caregiver) and service provider engagement in outpatient pediatric rehabilitation therapy sessions. Methods: In an ethnographic study, five research assistants attended 28 outpatient sessions, mostly delivered by occupational, physical, and speech-language therapists, and rated signs of client, provider, and re...

Aims: The aim of this paper is to provide a holistic description of the nature, formation and impact of parents’ therapy related expectations. Methods: This qualitative descriptive study drew from initial and follow up interviews with 20 parents of children ≤ 6 years who had a developmental disability or delay and used therapy services at a childre...

Purpose: Parents of children with disabilities are at increased risk of mental health challenges, yet it is unclear whether parent mental health screening should be considered in the context of children’s rehabilitation. Methods: A nonsystematic narrative review was conducted guided by a framework for assessing the effectiveness of proposed health...

Aims: Pediatric rehabilitation centers constantly reorganize services to accommodate changes in funding, client needs, evidence-based practices, accountability requirements, theoretical models, and values. However, there are few service delivery models or descriptions of how organizations plan for change to guide organizations through this complex...

Service providers, policy makers and researchers are increasingly concerned with service provisions for hard-to-reach families. These are defined as families who are eligible for a service, but are difficult for service providers to identify or engage. In our setting, hard-to-reach families were those who missed appointments without prior notice, a...