A Qualitative Examination of the Impact of the COVID-19 Pandemic on Individuals with Neuro-developmental Disabilities and their Families.

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 pandemic-related experiences which include: service reduction, the need for financial supports, relying on natural supports, and school-related challenges. Interruptions in services have resulted in intensified mental health issues for individuals with NDD and family caregivers, with particular concern for those with added social determinants of health-related barriers. Mitigating factors have also emerged, such as resilience and technology utilization to facilitate communication. Recommendations for resource flexibility and sufficiency as well as navigational support are offered.

Income trajectories of families raising a child with a neurodisability.

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 income increased over time for both groups, families of children with neurodisability had consistently lower household income compared to families of children without neurodisability even after controlling for child and family socio-demographic characteristics. The presence of an interaction effect between parent work status and child with neurodisability at baseline indicated that among children whose parent(s) were not working at baseline, household incomes did not differ between children with and without neurodisability. CONCLUSIONS: The association between child with neurodisability and lower household income may not hold for all types of parents', working status is an important consideration.Implications for RehabilitationFindings support the health selection hypothesis that health status shapes diverging economic conditions over time: children with a ND have lower household incomes than children without a ND child across all waves of the Canadian National Longitudinal Survey of Youth.Income gaps did not increase or decrease over time; rehabilitation services and policies must consider the lower average incomes associated with raising a child with a ND.Social assistance support likely plays a key role in closing the gap, especially for non-working families.

The Crisis Facing Older People Living with Neurodiversity and Their Aging Family Carers: A Social Work Perspective.

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 and their aging family carers are highlighted. The commentary calls for a collective social work response that highlights the critical role of support and advocacy necessary to redress social exclusion.

Developing a Canadian framework for social determinants of health and well-being among children with neurodisabilities and their families: an ecosocial perspective.

PURPOSE: Social Determinants of Health is a conceptual framework typically used to understand patterns of health and ill-health at the population level. Its applicability to children and youth who already have a health condition, in this case, a neurodisability, is not well understood, particularly when the "health" component of that framework is extended to include more pluralistic notions of well-being. The purpose of this study was to address this challenge and to develop an ecosocial framework that is conceptually integrative and meaningful to children and youth with neurodisabilities and their families. METHODS: Drawing on a critical literature review, a conceptual analysis approach, and a secondary analysis of a compendium of 36 social determinants of health models, we critically analysed how these models map onto the context of childhood neurodisability and identified key conceptual and empirical challenges. The emerging framework was further validated through iterative stakeholder consultation with parents, self-advocates, researchers, practitioners, community leaders, and decision-makers. RESULTS: The review and consultation process generated The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families. This new framework consists of two hemispheres encompassing explanatory (or observational) and action-oriented (or transformational) components relating to social determinants of health and well-being and living a daily life of quality in childhood neurodisability. CONCLUSION: The proposed framework provides a roadmap for practitioners, policy-makers, and researchers as well as activists, families, and communities, to reflect on both social determinants and social change processes that shape the health, well-being, and everyday lives of children and youth with neurodisabilities and their families.IMPLICATIONS FOR REHABILITATIONSocial 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 limited, to health.The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families comprises an explanatory hemisphere of social determinants, factors, and contingencies, and an action-oriented hemisphere that identifies different forms and levels of mobilization that can guide rehabilitation practice to achieve social change in the lives of children, youth, and their families.Using an ecosocial perspective, this framework provides a roadmap for future research and policy development that is relevant to children and families as well as to current perspectives in rehabilitation, social and health justice, and childhood, disability, and neurodiversity rights.

Parent Proxy Discrepancy Groups of Quality of Life in Childhood Epilepsy.

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 dyads. Latent class mixed models (LCMMs) were built, with child's age as the independent variable for epilepsy-specific and generic QOL. Data were obtained from the QUALITÉ Canadian cohort, which recruited children with epilepsy aged 8 to 14 years at baseline and their parents. RESULTS: Both epilepsy-specific and generic LCMMs produced latent classes representing proxies that were overly positive, overly negative, or in agreement relative to their children with posterior probabilities of 79% to 84%. The "agreement" classes had N = 411 and N = 349 in the epilepsy-specific and generic LCMMs, respectively. The epilepsy-specific LCMM had a small unique class of N = 5 with a posterior probability of 88% called "growing discrepancy." CONCLUSIONS: Most parents of children with epilepsy can serve as valid proxies for their children on QOL scales. Poorer parental adaptation is more related to overly negative proxies, whereas low peer support from the child's perspective is more related to overly positive proxies.

Assessment of the family environment in pediatric neurodisability: a state-of-the-art review.

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-step approach was used and 13 measures of family environment were identified within 77 studies. Five measures were used most commonly across a majority of studies (n=50). The measures varied considerably in terms of theoretical background, content, subscales, and populations for which they were developed and validated. These measures were used with considerable variability between studies and with a limited range of research respondents, most typically the child's mother. Challenges, opportunities, and suggestions on how to improve the application of family environment measures in research are discussed.

Determinants of participation in leisure activities among adolescents with cerebral palsy.

Studies have identified restrictions in engagement in leisure activities for adolescents with disabilities. Participation is a complex construct and likely influenced by a variety of factors. These potential determinants have not yet been sufficiently explored in the population of adolescents with cerebral palsy (CP). The objective of this study is to estimate the potential influence of adolescent characteristics and environmental factors as determinants of participation in leisure activities for adolescents with CP. A cross-sectional design was used. Participants were adolescents (12-19 years old) with cerebral palsy. Participants were assessed with the Vineland Adaptive Behavior Scale - II, Gross Motor Function Measure, Gross Motor Function Classification System, Manual Ability Classification System and completed the Self-Perception Profile for Adolescents, Dimensions of Mastery Questionnaire, Strengths and Difficulties Questionnaire, Family Environment Scale, the European Child Environment Questionnaire and the Preferences for Activities of Children. The main outcome measure was the Children's Assessment of Participation and Enjoyment. 187 adolescents (age M=15.4; SD=2.2) completed the study. Multivariate models of participation in leisure revealed associations with factors related to the adolescents' functional characteristics and attitudes, the family environment, socioeconomic status, and contextual factors such as school type, and collectively explained from 28% (diversity of skill-based activities) up to 48% (intensity and diversity of self-improvement activities) of the variance in intensity and diversity in five leisure participation domains (diversity: r(2)=.33 recreational; r(2)=.39 active-physical; r(2)=.33 social activities). Adolescent's mastery motivation, self-perception and behavior were individually associated with participation in different activity domains, but did not strongly predict participation within multivariate models, while preferences for activities were strong predictors of participation in all domains, except for skill-based activities. Engagement in different types of leisure activities is important for adolescents' development and well-being. Health care professionals should consider adolescents' and families' characteristics to promote participation in leisure activities.

Picture me playing-a portrait of participation and enjoyment of leisure activities in adolescents with cerebral palsy.

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 with CP and to identify potential differences in participation patterns related to sociodemographic attributes. A cross-sectional design was used. Participants were 175 adolescents 12-20 years old (M=15.3; ±2.2), GMFCS I=55/II=43/III=13/IV=18/V=39 who completed the Children's Assessment of Participation and Enjoyment (CAPE). The types of activities participants engaged in most frequently were social and recreational activities, whereas self-improvement and skill-based activities were least frequent. Social activities were the activities they enjoyed most. In general, participation decreases, as youth grow older. Girls engaged in more self-improvement activities than boys. Adolescents who study in special segregated schools experienced a lower diversity and intensity of engagement in all leisure activity domains. Adolescents who were not ambulatory and those presenting with more severe manual ability limitations participated less in all activity types except skill-based activities. Adolescents with CP place a high value on the ability to engage in activities of their own choosing and on interacting with friends. Engagement in a variety of leisure activities is important for a healthy development. Understanding the leisure patterns and preferences of this population, in addition to the contextual factors, may help in the elaboration of interventions and programs to promote a healthy development for this population.

Health-related quality of life in the aftermath of child maltreatment: follow-up study of a hospital sample.

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 protection team (CPT) to match controls and to explore correlates of HRQoL. METHOD: Of the 319 in- and outpatient children referred to the CPT at the University Children's Hospital Zurich between 2005 and 2006, an eligible sample of 180 children was contacted for a follow-up. HRQoL was assessed for 42 former patients using the self- and proxy-rated KIDSCREEN-27 for children above the age of 6 years and the TAPQOL parent report for children younger than 6 years. HRQoL-scores in the maltreatment group were compared with HRQoL in 39 matched controls. RESULTS: Self-reported HRQoL in maltreated children above the age of 6 years was significantly impaired compared to matched controls. The caregiver-rated HRQoL of maltreated children, however, was not affected. Low socioeconomic status and number of life events were associated with impaired self-reported HRQoL. Analyzed together with these factors, maltreatment lost its predictive power on HRQoL. CONCLUSION: Maltreated children and adolescents suffer from impaired HRQoL even after the maltreatment has been disclosed and targeted by interventions. The impact of socioeconomic environment reinforces the importance of a multidisciplinary and systemic approach to maltreatment as applied by the CPT. Although the nature of discordance between child and caregiver report is not known, researchers and clinicians are strongly encouraged to assess the victim's self-reported HRQoL independently of their proxies' view.

Conceptualizing childhood health problems using survey data: a comparison of key indicators.

BACKGROUND: Many definitions are being used to conceptualize child health problems. With survey data, commonly used indicators for identifying children with health problems have included chronic condition checklists, measures of activity limitations, elevated service use, and health utility thresholds. This study compares these different indicators in terms of the prevalence rates elicited, and in terms of how the subgroups identified differ. METHODS: Secondary data analyses used data from the National Longitudinal Survey of Children and Youth, which surveyed a nationally representative sample of Canadian children (n = 13,790). Descriptive analyses compared healthy children to those with health problems, as classified by any of the key indicators. Additional analyses examined differences between subgroups of children captured by a single indicator and those described as having health problems by multiple indicators. RESULTS: This study demonstrates that children captured by any of the indicators had poorer health than healthy children, despite the fact that over half the sample (52.2%) was characterized as having a health problem by at least one indicator. Rates of child ill health differed by indicator; 5.6% had an activity limitation, 9.2% exhibited a severe health difficulty, 31.7% reported a chronic condition, and 36.6% had elevated service use. Further, the four key indicators captured different types of children. Indicator groupings differed on child and socio-demographic factors. Compared to children identified by more than one indicator, those identified only by the severe health difficulty indicator displayed more cognitive problems (p < 0.0001), those identified only by the chronic condition checklist had a greater likelihood of reporting allergies or asthma (p < 0.0001), and those identified as having elevated service use only were more affluent (p = 0.01) and showed better overall health (p < 0.0001). Children identified by only a single indicator were less likely to have serious health problems than those identified by two or more indicators. CONCLUSION: We provide information useful to researchers when selecting indicators from survey data to identify children with health problems. Researchers and policy makers need to be aware of the impact of such definitions on prevalence rates as well as on the composition of children classified as being in poor health.

Intersection of Canadian policy parameters affecting women with precarious immigration status: a baseline for understanding barriers to health.

Canadian federal policy provides a framework for the immigration and health experiences of immigrant women. The official immigration category under which a migrant is admitted determines to what degree her right to remain in the country (immigration status) is precarious. Women immigrants fall primarily into the more dependent categories and they experience barriers to access to health services arising from this precarious status. Federal immigration and health policies create direct barriers to health through regulation of immigrants' access to services as well as unintended secondary barriers. These direct and secondary policy barriers intersect with each other and with socio-cultural barriers arising from the migrant's socioeconomic and ethno-cultural background to undermine equitable access to health for immigrant women living in Canada.