Parent-to-parent support for childhood neurodisability: A qualitative analysis and proposed model of peer support and family resilience.

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 family resilience theory can be helpful to situate the impact of parent-to-parent peer support processes within a family context to further explain how this type of assistance is beneficial. Our study aimed to describe the specific pathways by which peer support may contribute to resilience in families and how processes embedded in this type of support can enrich family resilience theory. METHODS: Using reflexive thematic analysis, we examined transcripts and notes from 19 interviews with parents of children with neurodisabilities regarding their involvement in a large (n = 300) and predominantly volunteer-based peer support network in western Canada. Using an inductive coding method, we identified patterns in the data. Following a process of reflection and discussion, we then used a deductive approach to situate themes within a family resilience theoretical framework. RESULTS: We identified three main themes from the data: Modifying belief systems through shared lived experience; navigating resources; and negotiating resources and engaging in social discourses. These themes confirm previous findings in the literature, and the subthemes demonstrate how they may contribute to broader family-level experiences beyond that of the parent. CONCLUSION: We present a model for understanding how processes in peer support can be understood within a family resilience theoretical framework. We also propose that the reciprocity embedded within peer support builds upon previous concepts within family resilience theory. Future studies can use this theoretical framework to guide research questions to further explore the effects of peer support at the family and community levels.

Examining the Impacts of the COVID-19 Pandemic on Service Providers Working with Children and Youth with Neuro-developmental Disabilities and their Families: Results of a Focus Group Study.

The COVID-19 pandemic has imposed unprecedented service interruptions in many sectors including services for children and youth with neuro-developmental disabilities (NDD). We examined the experiences of service providers as they supported this population during the pandemic. Five focus groups were convened with 24 service providers offering support to children/youth with NDD and their families. Results highlight substantial service changes and challenges, as observed by service providers. Service closures and program delivery modification resulted in the rapid adoption of virtual services and reduced program delivery. Service providers have faced heightened workloads, personal weariness and 'burn out', and new levels of conflict at work, yet with little opportunity and support for self-care. Beyond challenges, new learning and growth have emerged, with heightened collaboration amongst organizations. Strains in service delivery during the pandemic have exposed programming and systems gaps, for which proactive capacity building is warranted and recommended.

Patient-oriented research: A qualitative study of research involvement of parents of children with neurodevelopmental disabilities.

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 neurodevelopmental condition, to complete their research project. The purpose of this qualitative research was to examine the experiences of researchers and parents of children with a neurodevelopmental condition who participated on a research study advisory committee for the Strongest Families Neurodevelopment research project. From interviews with both parents/caregivers and researchers that played a role on the advisory committee, four major themes emerged on how to negotiate and navigate their time on the committee and what worked well and what did not. This led to recommendations for future researchers and patients who may create or be a part of an advisory committee.

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.

Topography of behavior problems among children with neurodevelopmental conditions: Profile differences and overlaps.

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 (n = 77), autism spectrum disorder (n = 58), and global developmental delay/intellectual disability (n = 44). Caregivers completed the Strengths and Difficulties Questionnaire, which provides a measure of conduct problems, emotional symptoms, hyperactivity-inattention, peer problems, as well as total difficulties. RESULTS: Behavior problem severity differed across diagnostic groups (p < .001). Visual examination of box plots indicated substantial overlap within Strengths and Difficulties Questionnaire subscales across children with autism spectrum disorder, cerebral palsy, and global developmental delay/intellectual disability. Children within each condition demonstrated matching profile topographies, such that hyperactivity-inattention difficulties were most severe. Repeated measures analysis of variances confirmed that children within each group received significantly higher ratings on the hyperactivity-inattention subscale (all p < .001). CONCLUSIONS: The approach adopted to examine the data and findings have the potential to inform how we conceptualize and study behavior problems among children with neurodevelopmental conditions. Importantly, children with particular conditions did not demonstrate unique constellations of difficulties. Clinicians must therefore be attuned to the possibility of commonality in behavior problems across children with disparate diagnoses, irrespective of syndrome-specific expectations.

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.

Education disparities in young people with and without neurodisabilities.

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 and Youth whom were followed for 14 years. We performed separate, discrete-time survival analysis to investigate the effects of having a neurodisability on high school completion, enrolment in post-secondary education (PSE), and PSE completion. RESULTS: The baseline prevalence of neurodisabilities was 12%. Fewer children with neurodisabilities completed high school or enrolled in PSE, compared to children without neurodisabilities, irrespective of parental education. The likelihood that students with neurodisabilities completed PSE differed according to their parents' education: students with neurodisabilities living in less-educated families were about half as likely to complete PSE themselves. INTERPRETATION: Children with neurodisabilities receive less education than children without neurodisabilities. Children from families with low educational attainment appear to be particularly vulnerable. WHAT THIS PAPER ADDS: Twelve per cent of children in Canada aged 10 years to 11 years have a neurodisability. High school completion rate was 70% for children with neurodisabilities versus 94% for children without neurodisabilities. Children with neurodisabilities from less-educated families are particularly vulnerable to lower educational achievement.

Child- and parent-reported quality of life trajectories in children with epilepsy: A prospective cohort study.

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 QoL. Participants were recruited with their parents from six Canadian tertiary centers. A convenience sample of 506 children aged 8-14 years with epilepsy and without intellectual disability or autism spectrum disorder were enrolled. A total of 894 children were eligible and 330 refused participation. Participating children were, on average, 11.4 years of age, and 49% were female. Nearly one third (32%) had partial seizures. At baseline, 479 and 503 child- and parent-reported questionnaires were completed. In total, 354 children (74%) and 366 parents (73%) completed the 28-month follow-up. QoL was measured using the child- and parent-reported version of the Childhood Epilepsy QoL scale (CHEQOL-25). RESULTS: Child-reported QoL was fitted best by a six-class model and parent-reported QoL by a five-class model. In both models, trajectories remained either stable or improved over 28 months. Of these children, 62% rated their QoL as high or moderately high, defined as at least one standard deviation above the average CHEQOL-25 score. Greater family, classmate, and peer social support, fewer symptoms of child and parent depression, and higher receptive vocabulary were identified as the most robust predictors of better QoL (all p < 0.001). SIGNIFICANCE: Most children with epilepsy and their parents reported relatively good QoL in this first joint self- and proxy-reported trajectory study. Findings confirm the heterogeneous QoL outcomes for children with epilepsy and the primary importance of psychosocial factors rather than seizure and AED-specific factors in influencing QoL. These predictors that are potentially amenable to change should now be the focus of specific intervention studies.

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.

Children with neurodevelopmental disorders and disabilities: a population-based study of healthcare service utilization using administrative data.

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 Medical Services Plan. Diagnostic information was used for the identification and classification of NDD/D in six functional domains. Healthcare service utilization included outcomes based on physician claims, prescription medication use, and hospitalization. RESULTS: Overall, 8.3% of children were identified with NDD/D. Children with NDD/D had higher healthcare service utilization rates than those without NDD/D. Effect sizes were: very large for the number of days a prescription medication was dispensed; large for the number of prescriptions; medium for the number of physician visits, different specialists visited, number of different prescription medications, and ever hospitalized; and small for the number of laboratory visits, X-ray visits, and number of days hospitalized. INTERPRETATION: The findings have policy implications for service and resource planning. Given the high use of psychostimulants, specialized services for both NDD/D and psychiatric conditions may be the most needed services for children with NDD/D. Future studies may examine patterns of physician behaviours and costs attributable to healthcare service utilization for children with NDD/D. WHAT THIS PAPER ADDS: Children with neurodevelopmental disorders and disabilities (NDD/D) have higher healthcare service utilization than those without. Based on provincial population-based linked administrative health data, a sizeable number of children are living with NDD/D. Given the high use of psychostimulants, specialized services for children with both NDD/D and psychiatric conditions may be the most needed services for children with NDD/D.

A follow-up study of cognitive function in young adults who had resective epilepsy surgery in childhood.

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 prior to the study, and the remainder had none. A comparison group of 16 individuals with childhood-onset intractable epilepsy who had not had surgery, all of whom had experienced at least one seizure in the past 12 months, was also included. The cognitive tests included measures of vocabulary, visuoconstructive ability, memory, and concept formation. Group differences were found only for the vocabulary and verbal memory tests, with the surgical group with seizures having the lowest performance. A subset of the surgical patients had preoperative data available on comparable tests, allowing for an examination of performance over time. Vocabulary scores were higher at follow-up, a finding which was present irrespective of seizure status. The results suggest that after epilepsy surgery in childhood or adolescence, few improvements in cognitive skills related to surgery or seizure outcome are to be expected.

Age-related variables in childhood epilepsy: how do they relate to each other and to quality of life?

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 and adjustment. Three hundred ninety-one Canadian and 266 Hong Kong youth with epilepsy completed the childhood epilepsy-specific quality of life (QOL) measure (CHEQOL-25). Each cohort was separately stratified by tertiles for age of onset, life proportion with epilepsy, and duration of epilepsy. Pearson's r was used for correlation analysis. The epilepsy age-related variables correlated strongly with each other among children with epilepsy onset ≤4 years (r = 0.53-0.66). The correlation between these variables was weaker with an onset ≥9 years (r =0.22-0.35). Correlation with QOL was clinically non-significant. These variables appear to measure the same phenomenon only in children with early epilepsy onset (<4 years) and explain little variance in QOL.

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.

The relationship between manual ability and ambulation in adolescents with cerebral palsy.

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. Most adolescents were ambulatory with or without utilization of aids (GMFCS level I: 35.0%, II: 30.0%, III: 5.8%, IV: 10.8%, and V: 18.3%). MACS levels were I: 34.2%, II: 25.8%, III: 16.7%, IV: 7.5%, and V: 15.8%. Correlations between GMFCS and MACS were strong in youth with quadriplegia (r = .89, p < .001), moderate in individuals with diplegia (r = .58, p = .01), but weakly associated for adolescents with hemiplegia (r = .24, p = .23). The findings provide evidence for maintaining a clinical distinction between spastic quadriplegia and spastic diplegia. Manual ability may not be congruent with mobility in adolescents with CP and should be specifically evaluated given its importance to daily life functioning.

Content analysis of parent training programs for children with neurodisabilities and mental health or behavioral problems: a scoping review.

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 and comorbid disruptive behavior or other mental health problem. MATERIALS AND METHODS: Following a scoping review protocol, the search strategy included randomized controlled trials of parent training programs conducted with families of children with neurodisabilities and comorbid disruptive behavior or mental health problems. Study characteristics, program content, delivery methods, and theoretical frameworks were extracted from eligible studies. RESULTS: A total of 22 articles were included from the 453 full-text articles initially screened. Thirteen different programs fell into two general categories based on whether they targeted child disruptive behavior or anxiety. Analysis of the content yielded five themes: child skill enhancement, parenting as enacted, parenting as experienced, disability-related parenting, and parent-child relationships. The theoretical underpinnings were identified, when possible, from each study. CONCLUSIONS: Parent training programs for parents of children with neurodisabilities targeting child anxiety involved parents in a complementary role in treatment while those targeting disruptive behavior involved parents in a primary role in creating behavior change. We suggest that the extent of parent involvement in interventions be guided by theory rather than diagnosis of the child.Implications for rehabilitationParents of children living with neurodisabilities play a key role in delivering interventions to address comorbid mental health or behavioral problems.Parent training programs for families of children with neurodisabilities vary in relation to their aims, involvement of parents in delivering interventions, disability-specific content, and delivery methods.When referring families, rehabilitation professionals should be aware of aspects of child, parent, and family relational well-being targeted by parent training programs and, when feasible, give families a choice of the style of program to meet their needs.

Impacts of the COVID-19 Pandemic: Pan-Canadian Perspectives From Parents and Caregivers of Youth With Neurodevelopmental Disabilities.

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 the perspectives and experiences of parents and caregivers of youth with NDD across Canada in accessing services and their mental health needs during the pandemic. METHOD: The study used a qualitative research design in which we interviewed 40 parents and caregivers across Canada. RESULTS: The results enabled us to understand the impact of service disruptions in significant areas of life, including health, education, employment, and risk mitigation. DISCUSSION: Policymakers must consider a disability-inclusive lens during public health emergency planning and response to reduce the disproportionate impacts faced by youth with NDD and their families.

Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study.

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: This mixed methods sequential explanatory study utilized two phases: an online survey (quantitative), followed by semi-structured interviews (qualitative). The quantitative phase gathered sociodemographic information and preliminary information about participant experiences applying for and accessing programs. The qualitative phase provided greater depth by asking participants to describe barriers and facilitators to program access. OUTCOMES AND RESULTS: 499 participants completed the online survey and 81 participants completed an interview. Analysis of survey data revealed that many participants are not accessing disability programs and experience difficulty when applying. Regression analyses revealed that factors relating to the process of applying and applicant/family attributes are significantly associated with program access. Inductive thematic analysis of interview data revealed four barriers and three facilitators to access. Integration of findings provided an overview of the multi-faceted journey to program access. CONCLUSIONS AND IMPLICATIONS: The results of this study highlight policy changes that are needed to ensure disability programs adequately support Canadian families.

Quality of life in young adults who underwent resective surgery for epilepsy in childhood.

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 seizure-free in the past year (n = 38) and those who had seizures (n = 31) in that time. A nonsurgical comparison group of young adults (n = 29) with childhood-onset medically intractable epilepsy was also studied. All groups completed measures of QOL and mood. KEY FINDINGS: After accounting for mood, sex, and number of antiepileptic drugs, the seizure-free group reported better cognitive and physical function and overall QOL, experienced less seizure worry, and had better self-perception. Mood was the most consistently predictive covariate, and was independently predictive of many aspects of QOL. SIGNIFICANCE: Seizure freedom associated with surgery in childhood is associated with improved QOL in certain domains. Findings highlight the importance of mood in determining self-perception of QOL.

Life decisions of Taiwanese women who care for a sibling with cerebral palsy.

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 emerging from caregivers' experiences were caring through interpretation, caring through protection, and caring through sacrifice. These ways of caring created unique considerations and tensions that appeared to have a profound effect on the women's major life decisions.

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.