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

Finlay, Brittany; Wittevrongel, Krystle; Materula, Dercia; Hébert, Michèle L.; O'Grady, Kathleen; Lach, Lucyna; Nicholas, David; Zwicker, Jennifer

doi:10.1016/j.ridd.2022.104420

Cited by 4 publications

(2 citation statements)

References 26 publications

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“…Some of the priority areas identified in this study, including "systems-level programs and services", "caregiver capacity building", "general health promotion", "mental health promotion and mental healthcare", "care and care planning along the lifespan", and "social inclusion", have already started receiving some research attention. For instance, two recent studies [29,49] highlight the importance of research to explore longstanding issues with funding and accessing publicly-funded community-based programs and services for caregivers. There have also been calls for theoretically grounded caregiver capacity-building interventions that enhance knowledge and skills to manage caregiving responsibilities [50].…”

Section: Discussionmentioning

confidence: 99%

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study

Fakolade,

Stone,

Bobbette

2023

IJERPH

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Current programming and resources aimed at supporting the well-being of family caregivers often fail to address considerations unique to those caring for people with intellectual and/or developmental disabilities (IDDs). As a result, many caregivers of people with IDD feel isolated, stressed, and burnt out. A targeted research agenda informed by key stakeholders is needed and would allow research teams to coordinate resources, talents, and efforts to progress family caregiver well-being research in this area quickly and effectively. To address this aim, this pilot study used a Delphi design based on 2 rounds of questionnaires. In round 1, 19 stakeholders (18 females, 1 male), including 12 family caregivers, 3 rehabilitation providers, 2 researchers, and 2 organizational representatives, identified broad areas for caregiver well-being research. After collating the responses from round 1, stakeholders were asked to rank whether each area was considered a research priority in round 2. Data were analyzed using descriptive statistics and conventional content analysis. Eighteen stakeholders completed the round 2 survey (1 caregiver did not complete the round 2 survey), after which a consensus was reached. Stakeholders identified nine broad priorities, including system-level programs and services, models of care, health promotion, social inclusion, equity and diversity, capacity building, care planning along the lifespan, and balancing formal and natural community-based supports. Although preliminary in nature, the research priorities generated using an inclusive and systematic process may inform future efforts to promote the well-being of caregivers of Canadians with IDD.

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Section: Discussionmentioning

confidence: 99%

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study

Fakolade,

Stone,

Bobbette

2023

IJERPH

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“…The P10 case study has implications for immigration-related policy-making by illustrating challenges with unemployment and unfamiliarity with community-based NDD-MC supports. Previous research showed that unemployment restricts access to NDD-MC resources in Canada (62) where most disability-related benefits and credits are delivered through the tax system (63). In most cases, families are required to pay upfront for services and apply for reimbursement which may be a barrier for low-income households.…”

Section: The Intersection Of Race and Immigrant Status For Families O...mentioning

confidence: 99%

Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity

Materula,

Currie,

Jia

et al. 2023

Front. Public Health

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IntroductionCare Coordination (CC) is a significant intervention to enhance family’s capacity in caring for children with neurodevelopmental disability and medical complexity (NDD-MC). CC assists with integration of medical and behavioral care and services, partnerships with medical and community-based supports, and access to medical, behavioral, and educational supports and services. Although there is some consensus on the principles that characterize optimal CC for children with NDD-MC, challenges remain in measuring and quantifying the impacts of CC related to these principles. Two key challenges include: (1) identification of measures that capture CC impacts from the medical system, care provider, and family perspectives; and (2) recognition of the important community context outside of a hospital or clinical setting.MethodsThis study used a multilevel model variant of the triangulation mixed methods design to assess the impact of a CC project implemented in Alberta, Canada, on family quality of life, resource use, and care integration at the broader environmental and household levels. At the broader environmental level, we used linked administrative data. At the household level we used quantitative pre-post survey datasets, and aggregate findings from qualitative interviews to measure group-level impacts and an embedded multiple-case design to draw comparisons, capture the nuances of children with NDD-MC and their families, and expand on factors driving the high variability in outcome measures. Three theoretical propositions formed the basis of the analytical strategy for our case study evidence to explore factors affecting the high variability in outcome measures.DiscussionThis study expanded on the factors used to measure the outcomes of CC and adds to our understanding of how CC as an intervention impacts resource use, quality of life, and care integration of children with NDD-MC and their families. Given the heterogeneous nature of this population, evaluation studies that account for the variable and multi-level impacts of CC interventions are critical to inform practice, implementation, and policy of CC for children with NDD-MC.

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Children with neurodisabilities and public policy: Universal design for function rather than diagnosis

Chipeur

Zwicker

2023

Developments in Neuroethics and Bioethics

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

Cited by 4 publications

References 26 publications

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study

Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity

Children with neurodisabilities and public policy: Universal design for function rather than diagnosis

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