24 research outputs found

    The Allegory of "Navigation" as a Concept of Care: The Case of Child Neurodevelopmental Disabilities

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    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 challenges by exploring navigation as an allegory that conveys the process of making one’s way through a complex web of care. We briefly trace the history of this concept and revisit its emergence and development in the context of health and social care. Drawing on a targeted review of the literature on this topic, we anchor our discussion in the case study of navigation programs for children with neurodisabilities and their families in Canada. In conclusion, we call for a social ecological approach to navigation as a matter of care and concern that has salient relational and political dimensions warranting additional research attention and policy development

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

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    <p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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.</p> <p>Results</p> <p>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.</p> <p>Conclusion</p> <p>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.</p

    Using Canadian administrative health data to measure the health of caregivers of children with and without health problems: A demonstration of feasibility.

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    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 health in administrative data can enable population-level study of caregiver health. Methods Dyads from Population Data British Columbia (BC) databases, encompassing nearly all mothers in BC with children aged 6-10 years in 2006, were grouped using a non-categorical definition based on diagnoses and service use. Regression models examined whether four maternal health outcomes varied according to indicators of child health. Results 162,847 mother-child dyads were grouped according to the following indicators: Child High Service Use (18%) vs. Not (82%), Diagnosis of Major and/or Chronic Condition (12%) vs. Not (88%), and Both High Service Use and Diagnosis (5%) vs. Neither (75%). For all maternal health and service use outcomes (number of physician visits, chronic condition, mood or anxiety disorder, hospitalization), differences were demonstrated by child health indicators. Conclusions Mothers of children with health problems had poorer health themselves, as indicated by administrative data groupings. This work not only demonstrates the research potential of using routinely collected health administrative data to study caregiver and child health, but also the importance of addressing maternal health when treating children with health problems. Keywords Population data, linked data, case-mix, children with special health care need

    Trajectories of Poverty and Economic Hardship among American Families Supporting a Child with a Neurodisability

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    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 for risk of two indicators: poverty and economic hardship. In bivariate terms, families raising a child with ND had higher risks of poverty and economic hardship across time. Five latent growth trajectories were identified for each indicator. After controlling for family and caregiver characteristics that preceded the birth of the child with an ND, families raising a child with a ND were more likely to experience persistent economic hardship. However, raising a child with a ND was not associated with a unique poverty risk, suggesting that families already in poverty are more likely to remain poor if they have a child with a ND. The study establishes descriptive evidence for how having a child with a ND relates to changes in family economic conditions. The importance of social and economic conditions that precede the child’s birth lend support for a social causation framework of health inequalities

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

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    PurposeSocial 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.MethodsDrawing 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.ResultsThe 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.ConclusionThe 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

    Processes of Metastudy: A Study of Psychosocial Adaptation to Childhood Chronic Health Conditions

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    Metastudy introduces a systematically aggregated interpretive portrayal of a body of literature, based on saturation and the synthesis of findings. In this metastudy, the authors examined qualitative studies addressing psychosocial adaptation to childhood chronic health conditions, published over a 30-year period (1970–2000). They describe metastudy processes, including study identification, strategies for study search and retrieval, adjudication of difference in study design and rigor, and analysis of findings. They also illustrate metastudy components through examples drawn from this project and discuss implications for practice and recommendations