Lucyna M Lach

• PhD, University of Toronto
• McGill University

As part of a participatory project to advance navigational service delivery systems for children with neurodevelopmental disability (NDD) and their families, this paper addresses proceedings from a capacity-building conference in Vancouver, Canada. A total of 29 invited key stakeholders attended the meeting with the following aims: knowledge sharin...

There is a disconnect between theoretical depictions of educational upward mobility (EUM) and empirical evidence. Although the Origin‐Education‐Destination (OED) triangle, a functionalist model in its ideal meritocratic state, posits education as the key mediator between one's origin and destination, efforts to address inequality through higher edu...

Background Inclusionary ideals regarding the education of children with disabilities (CWD) are articulated in various international human rights treaties and instruments such as the United Nations Convention on the Rights (2006), the Salamanca Statement (1994), and the 2030 agenda of the UN’s Sustainable Development Goals (SDGs). In the latter, the...

Background At present, little is known about the factors that contribute to the relatively low uptake of government-funded disability programs in Canada. Aim Understand how parents/caregivers of Canadian youth with neurodevelopmental disability (NDD) experience the process of applying for and accessing disability programs. Methods and Procedures...

Introduction The COVID-19 pandemic brought unprecedented challenges for youth with neurodevelopmental disabilities (NDD) and their families. Although health measures were implemented to contain the COVID-19 virus, they disrupted public service, profoundly impacting youth and their families’ access to services. This study sought to better understand...

Background The global pandemic and subsequent denials, delays, and disruptions in essential daily activities created significant challenges for children with neurodevelopmental disorders (NDDs) and their parents. Public health restrictions during the COVID-19 pandemic limited access to supports and services required by children with NDDs to maintai...

Background: Qualitative studies have shown that peer support is of value to parents and other caregivers of children with neurodisability. However, this value likely cascades to other areas such as family well-being. There are various forms and functions of peer support, and how they operate is not well understood for this population. Models of fa...

*The first two authors contributed equally to this work.* Navigation encompasses a defined range of care concepts and practices, services and professions while also alluding to a broader set of care values, needs, and challenges associated with health inequities, social exclusion, and service fragmentation. In this article, we address some of these...

Individuals with neuro-developmental disabilities (NDD) have been profoundly affected by the COVID-19 pandemic. Based on focus groups with 24 service providers supporting this population, using an Interpretive Description approach, we examined perceived impacts of the pandemic on individuals with NDD and their families. The results highlight pandem...

Background: Peer support for parents as a form of service and system navigation for families of children with neurodisabilities facilitates family resilience through their shared lived experience. However, there is little research available describing the experience of the key stakeholders engaged in this type of peer support. Methods: Through them...

Background: The COVID-19 pandemic has imposed unprecedented service interruptions in many sectors including services for children and youth with neuro-developmental disabilities (NDD). Methods: We examined the experiences of service providers as they supported this population during the pandemic. Five focus groups were convened with 24 service prov...

This study served to conceptualize neurodisability (ND) navigation-building. Capacity-building toward wide-reaching ND navigation or help-seeking service lacks empirical evidence. Researchers widely agree that a system-wide framework is absent. While research emphasizes service-level findings, other jurisdiction- and policy-level insights are lacki...

Purpose Several systematic reviews have examined parent training programs for families of children with autism spectrum disorder (ASD). The present review expands on this literature by describing the components, delivery methods, and level of parent involvement in parent training programs that target families of children with any neurodisability an...

A cross-jurisdictional pan-Canadian environmental scan was conducted to identify provincial, territorial, and federal financial supports available to families with children living with neurodisabilities. In partnership with the organization Childhood Disability LINK, flowchart-styled pathway documents were developed for each financial support ident...

IMPLICATIONS Social Determinants of Health provides a conceptual framework for understanding the social causes and consequences of health and ill-health at the population level. In childhood neurodisability, however, it is important to consider pluralistic notions of “well-being” and living a daily “life of quality” that may relate, but are not l...

This commentary addresses barriers to care among older adults living with neurodiversity (ND), and their aging family carers in the context of the COVID-19 pandemic in Canada. Factors contributing to inequities are described and the significant negative consequences of current policy decisions on the social and mental health of older adults with ND...

Background: Given the significant behavioral heterogeneity characterizing children with neurodevelopmental disorders and disabilities (NDD/D), the current study examined whether cluster analysis could classify a diverse sample into more homogeneous subgroups. Aims: We first utilized cluster analysis to identify subgroups of children demonstrating s...

Purpose: To examine household income trajectories of children with and without neurodisability over a period of 6 years. Method: We used four cycles of the Canadian National Longitudinal Survey of Children and Youth, a longitudinal study of the development and well-being of Canadian children from birth into adulthood. Results: While household...

Background Raising a child with a neurodevelopmental disorder or disability (NDD/D) presents unique challenges to the family, and presence of behavior problems has been identified as a critical risk factor for a broad range of family outcomes. Aims The current study examines whether caregivers’ perceptions of child and family service adequacy medi...

Patient-oriented research engages patients and caregivers as partners contributing to all phases of the research process. This was the goal of the Strongest Families Institute Neurodevelopmental research, in Halifax, Nova Scotia, when they included a parent advisory committee, made up of parents and caregivers of children and adolescents with a neu...

Background: This exploratory proof of principle study examined the extent to which behavior problems represent a functional characteristic that crosses diagnostic boundaries. Methods: This cross-sectional study pertains to 179 caregivers of children, aged 4-13 years (M = 8.27) with cerebral palsy (CP; n = 77), autism spectrum disorder (ASD; n =...

Background: In preschool-aged children with, or at elevated risk for, developmental disabilities, challenges and needs arise from vulnerabilities linked to critical and newly emerging cognitive, speech, motor, behavioral, and social skills. For families, this can be a stressful period as they witness the gradual unfolding of their child's differenc...

Background: Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships and well-being of family members, but evidence on the economic trajectories of families throughout the life course is missing. Methods: Using data from the Panel Study of Income Dynamics, we tracked the families of 3317 children starting 5 y...

Objectives: To study the extent to which parents are able to serve as true proxies for their children with epilepsy using a more granular approach than has been found in any study to date. Methods: Proxy resemblance to the child was based on discrepancy in z-centered child minus parent scores of matching quality-of-life (QOL) domains for 477 dya...

Introduction Caregivers of children with health problems experience poorer health than the caregivers of healthy children. To date, population-based studies on this issue have primarily used survey data. Objectives We demonstrate that administrative health data may be used to study these issues, and explore how non-categorical indicators of child...

Background Using linked administrative health data, this study compared the health and healthcare service utilization between mothers of children with and without neurodevelopmental disabilities (NDD), before, during, and after the birth of a child. Methods The population (N = 25,388) was based on a cohort of children born in 2000 and who were,...

Background: Caregivers of children with health problems (CHPs; usually mothers) experience more physical and psychological health problems than those of children without health problems (non-CHPs). Primarily cross-sectional and survey-driven, this literature has not yet explored whether these health differences existed before the birth of the CHPs...

Background The aim of the current study was to identify functional predictors of perceived impact of childhood disability among families of children with neurodevelopmental disorders and disabilities. We first examined the relationship between sub‐domains of adaptive and problematic behaviour and perceived family impact. Second, we examined whether...

Aim To examine key outcomes in the education of young people with and without neurodisabilities, and to investigate additional disparities in educational achievement in relation to socio‐economic background. Method Data were collected on 2488 Canadian children (age range 10–11y) in 1994 and 1995 from the National Longitudinal Survey of Children an...

Background: Both child function and supports and services have been found to impact the well-being of parents of children with neurodevelopmental disorders (NDD). The relationship between function and services and the well-being of children with NDD is less well-understood and is important to clarify in order to effect program and service change....

Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships, and well-being of family members. Using the Panel Study of Income Dynamics (PSID), we tracked families from 5 years before child with ND birth until the child reached 20 years of age and used latent growth curve modeling to estimate different trajectories...

Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships, and well-being of family members. Using the Panel Study of Income Dynamics (PSID), we tracked families from 5 years before child with ND birth until the child reached 20 years of age and used latent growth curve modeling to estimate different trajectories...

Aim: The aim of this study was to identify children with neurodevelopmental disorders and disabilities (NDD/D) and compare their healthcare service utilization to children without NDD/D using provincial linked administrative data. Method: The sample included children aged 6 to 10 years (n=183 041), who were registered with the British Columbia M...

Background: In the past thirty years, theoretical and empirical scholarship on father involvement has emerged and firmly established itself. Efforts to define, measure, and explore outcomes related to father involvement in the context of childhood neurodisability are evident but less well established. The purpose of this study was to systematically...

Objective: To describe the developmental trajectories of quality of life (QoL) in a large cohort of children with epilepsy, and to assess the relative contribution of clinical, psychosocial, and sociodemographic variables on QoL trajectories. Methods: Five assessments during a 28-month prospective cohort study were used to model trajectories of...

This study explored the utility of the Johns Hopkins Aggregated Diagnostic Groups (ADGs) as a non-categorical measure of child health in administrative health data. Canadian administrative health records for the province of British Columbia (N = 232,870; children aged 6-10 years) were used to examine the prevalence of specific ADG groupings, includ...

The importance of the family environment for the development of children with neurodisabilities is undisputed. The objective of this study is to describe how family environment has been measured in research on families of children with neurodisabilities, in order to support researchers and clinicians to select appropriate methods for use. A three-s...

A scoping review of the literature on parenting programmes that target the promotion of adolescent mental health was conducted to examine the quality of the studies and unique content of programmes for parents from ethnoculturally diverse communities. PsycINFO and Web of Science were searched in April, 2011 (for all publications prior to that date)...

Background: About my Child, 26-item version (AMC-26) was developed as a measure of child health 'complexity' and has been proposed as a tool for understanding the functional needs of children and the priorities of families. Methods: The current study investigated the reliability and validity of AMC-26 with a sample of caregivers of children with...

With increasing age, youth with disabilities are at risk for decreased participation in leisure activities, a key component for physical and mental health. This prospective study describes changes in leisure participation and leisure preferences from school-age to adolescence in children with cerebral palsy (CP). Participants were recruited at scho...

The first social work doctoral program in Canada began in 1952. Relatively recently the number of programs has grown rapidly, doubling in the past ten years to 14 programs. Despite the expansion there is no systematic understanding of the patterns and trends in doctoral research. In this study we review 248 publicly available dissertations from 200...

To study child mental health, parental support, and social support of children with epilepsy as these relate to quality of life (QOL) using child self-report, seizure-related variables, and estimated verbal intelligence based on receptive vocabulary. A cross-sectional structural equation model of baseline data from the QUALITÉ cohort study, which i...

Few studies have examined the potential of linked administrative data for research on child health. This analysis describes the application of a non-categorical survey-based tool, the Children with Special Health Care Needs (CSHCN) Screener, to administrative data. Five Screener items were applied to linked administrative health data from Populatio...

Purpose: This study examines psychosocial functioning in children with neurodevelopmental disorders (NDDs) and/or externalizing behavior problems (EBPs) as compared to children with neither condition. Methods: The longitudinal sample, drawn from the Canadian National Longitudinal Survey of Children and Youth, included children who were 6 to 9 years...

This study examined cognitive function in young adults who had epilepsy surgery in childhood. Thirty-seven individuals with medically intractable epilepsy with onset at 16 years or younger who had resective epilepsy surgery at least two years in the past (mean follow-up duration of 8.5 years) were assessed; of these, 13 had seizures within the year...

Purpose: The nature and types of social work research generated in doctoral programs has been well-studied in the US. Doctoral programs in Canada, in comparison, are much younger; the first doctoral program was created in the mid-1970s. To date, there is no systematic understanding of the nature and types of knowledge produced within Schools and Fa...

Objective: This study aimed at describing leisure activity preferences of adolescents with cerebral palsy (CP) and their relationship to participation and to identify factors associated with greater interest in particular leisure activities. Methods: A cross-sectional design was used. Participants were adolescents (n = 127; 59.5% male; ages 12-1...

This study determined the extent to which parents of adolescents with cerebral palsy seek out complementary and alternative medicine services. A regional sample of 166 adolescents (15.5 ± 2.4 years) with cerebral palsy were recruited. Parents completed a questionnaire identifying the complementary and alternative medicine services received over the...

Introduction: Quality of life (QoL) is an important outcome of health interventions for children and youth with cerebral palsy (CP). When planning interventions it is fundamental to understand what constitutes a good QoL, a subjective construct, and what factors are important to consider from both parents' and children's perspectives. Methods: W...

How do age of onset and duration of epilepsy correlate with each other and with patient-reported outcomes? To address this question, we explored whether age of onset, duration, and proportion of life with epilepsy are either similar or relatively independent variables that can be used as markers on how children experience the complexity of epilepsy...

Aim: To describe the pattern of use of rehabilitation services in children and adolescents with cerebral palsy (CP), and to identify factors associated with use. Methods: In this study, parents of 91 school-age children and 167 adolescents with CP completed a questionnaire regarding educational and rehabilitation resources received within the la...

ABSTRACT This study examined the relationship between gross motor function and manual ability in 120 adolescents with cerebral palsy (CP) (15.2, SD 2.1 years, 59.8% male). Adolescents were evaluated using the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS). A neurologist classified CP subtype....

In recent years attention has been paid to the participation levels of children and youth with Cerebral Palsy (CP), particularly the extent to which they have the opportunity to be involved in and enjoy leisure activities. The objective of this study is to describe the level of participation and enjoyment in leisure activities among adolescents wit...

Behavioral problems are common in children with cerebral palsy; however, little is known about the persistence of these difficulties during adolescence. This study aimed to describe the nature and frequency of behavioral difficulties in adolescents with cerebral palsy and to explore associated factors. Parents of the participants completed the Stre...

Objective: In the aftermath of child maltreatment or neglect, the health-related quality of life (HRQoL) in children is likely to be affected. However, research on quality of life in maltreated children is lacking. The aim of this study is to compare the HRQoL in a follow-up sample of children referred to an interdisciplinary hospital child protec...

Purpose: This study investigated quality of life (QOL) in young adults who had undergone epilepsy surgery before the age of 16 years. The contribution to QOL of seizure status in the prior year, sex, number of antiepileptic drugs, and mood were evaluated. Methods: Sixty-nine young adults who had undergone surgery were subdivided into those who were...

We used a phenomenological method to examine how the caregiving experiences of Taiwanese women who care for a sibling with cerebral palsy (CP) influence their life decisions. In-depth qualitative interviews were conducted with six adult women, each of whom self-identified as being the sister most involved in caring for a sibling with CP. Themes eme...

Purpose: This population-based study examined correlates of three parenting behaviors (positive interactions, consistency, and ineffective parenting) that have been shown to differ in children with neurodevelopmental disorders (NDDs), with and without externalizing behavior problems (EBPs), as compared to children with neither condition. Method:...

Neurodevelopmental disorders (NDDs) is an umbrella term used to refer to conditions affecting children’s neurologic development. Children with NDDs may experience impairments in virtually any aspect of function and development, such as mobility, self-regulation and communication, social reciprocity, interests, and behaviors. These children have sig...

We used Canadian population-based data to examine changes in the health of caregivers of children with complex health problems compared with caregivers of healthy children over a 10-year time period. The National Longitudinal Survey of Children and Youth collected data biennially from 9401 children and their caregivers in 6 waves from 1994-1995 to...

Background: Parenting behaviours influence child well-being and development. However, much of the research on parenting behaviours and their correlates has focused on caregivers of healthy, typically developing children. Relatively less is known about the parenting behaviours of caregivers of children with chronic health conditions. Objective: T...

In this study the authors address the quality of abstracts reviewed during a systematic review. Their objective was to describe the proportion of abstracts that could not be coded and to explore factors associated with that outcome. Using an exploratory design, a database of titles uploaded for analysis was examined for clarity, type and year of pu...

Background: The impact of autism spectrum disorder (ASD) is substantial. The need for resources is often daily and across the lifespan, with implications for personal development, family life, school and vocational involvement, community engagement, funding; mental health, and diagnostic, developmental, rehabilitation and other services. The mix of...

Purpose: The literature on the health of parents of children with health problems is mixed as to how their health should change over time, with hypotheses suggesting that it should a) decline faster over time, or b) actually improve over time compared to caregivers of healthy children. Canadian population-based data were used to examine changes ove...

The purpose of this study was to examine the social relationships and participation in educational, vocational, and community life in young adults who had undergone epilepsy surgery during childhood or adolescence. This was a retrospective, cross-sectional, case-controlled, and multisite design study. Findings were compared between young adults who...

To explore, identify and understand the contribution that biomedical and psychosocial factors make to the assessment of health-related quality of life (HRQL) of children and youth with epilepsy using the CHEQOL-25. We identified and measured variables that may influence HRQL; grouped the variables into four conceptual categories; and used simple an...

In this study the authors examined Internet-mediated qualitative data collection methods among a sample of children with chronic health conditions. Specifically, focus groups via Internet technology were contrasted to traditional face-to-face focus groups. Internet focus groups consisted of asynchronous text-based chat rooms lasting a total of one...

The present qualitative study explored how participants perceive their quality of life within the social domain 2 years following epilepsy surgery. Semistructured, open-ended interviews were conducted with 27 participants (11-21 years old), 2 years following epilepsy surgery. Thirteen of the 27 participants were seizure free. Data were transcribed...

This study investigates current policies, key issues, and needs for pandemic planning in pediatrics in Canada. Online pandemic plans from national, provincial and territorial government websites were reviewed to identify: plans for children and families, and psychosocial and ethical issues. A survey was administered to gather participants' perspect...

Tecarfarin (ATI-5923) is a novel vitamin K epoxide reductase inhibitor that is metabolized by esterase (mainly human carboxylesterase 2) to a single major metabolite, ATI-5900, in rats, dogs and humans. Tecarfarin is not significantly metabolized by CYP450 enzymes. The objective of this study was to test and compare the efficacy of tecarfarin with...

We used population-based data to evaluate whether caring for a child with health problems had implications for caregiver health after we controlled for relevant covariates. We used data on 9401 children and their caregivers from a population-based Canadian study. We performed analyses to compare 3633 healthy children with 2485 children with health...

The aim of this qualitative study was to obtain the perspectives of adolescents with cerebral palsy (CP) on factors that positively or negatively influence their quality of life (QoL). Using constructivist grounded theory, adolescents (12-16 years) were interviewed to obtain their accounts of intrinsic and extrinsic attributes that made a differenc...

Children and parents evaluate the child's quality of life (QOL) from their own perspectives; therefore, responses may differ, especially in abstract domains. We examined differences between self- and proxy-reported QOL of children with epilepsy. Children with active epilepsy (N=375) and their parents (N=378) separately completed the CHEQOL-25, a co...

Children with neurodevelopmental disorders (Neuro) pose complex parenting challenges, particularly if the condition co-occurs with behaviour problems. Such challenges are likely to impact caregiver health and well-being. This study explores the extent to which caregivers of children with both 'Neuro' and behaviour problems differ in their physical...

Children and youth with cerebral palsy (CP) experience difficulties in their ability to move, problem solve, socialize, and communicate, associated with limitations in activities in all environments. They are at risk for lower participation in social and leisure activities critical in fostering friendships, developing interests, and promoting well-...

We prospectively explored psychosocial outcomes in children (7-18 years) 2 years after epilepsy surgery. This study built on our previous one that examined these children 1 year after surgery. Twenty children were studied using the Child Behavior Checklist (CBCL; a parent report instrument of potential behavioral and social problems) preoperatively...

Indicators of childhood health problems used in the literature. Appendix summary of relevant studies.