Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis

Background: As children and adolescents with a chronic health condition (CHC) age and transition to adulthood, many will increasingly assume responsibilities for the management of their healthcare. For individuals with CHCs, family members including siblings often provide significant and varied supports. There are a range of resources in Canada to support siblings of individuals with a CHC, but these resources are not synthesized and the extent to which they relate to healthcare management remains unclear.Purpose: The purpose of this document review was to identify, describe, and synthesize the types of resources currently available to provide general information and healthcare management information about how siblings can provide support to individuals with CHCs in Canada.Methods: Print and electronic resources were systematically identified and retrieved from the websites of organizations, treatment centers, and children's hospitals that are part of Children's Healthcare Canada. Each unique resource was treated as a text document. Documents that met the following inclusion criteria were included: addressed the topic of siblings of individuals with a CHC and written in English. Data were extracted from included documents and qualitative conventional content analysis was conducted. Throughout the process of this review, we partnered with a Sibling Youth Advisory Council.Results: The systematic search yielded 1,628 non-duplicate documents, of which 163 documents met the inclusion criteria. Of the total of 163 documents, they were delivered in the following formats: 17 (10%) general informational products (e.g., booklets, videos) about a CHC and sibling relationships, 39 about support programs and workshops (24%), 34 news articles (21%) that described the roles of siblings, and 6 (3%) healthcare management informational products (e.g., toolkit, tipsheets), 31 blogs (19%) and 39 interviews (24%) with parents and siblings. In the blogs and interviews, siblings and parents described how siblings developed knowledge and skills for healthcare management, as well as their role and identity over time.Significance: This study identified that there are limited resources available about healthcare management for siblings of CHC in Canada. Resources are needed to facilitate conversations in the family about the role of siblings with healthcare management of their sibling with a CHC.

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The Role of Science and Advocacy Regarding a Chronic Health Condition

The Social Psychology of Politics - Social Psychological Applications to Social Issues ◽

10.1007/978-1-4615-0569-3_8 ◽

2002 ◽

pp. 157-172

Author(s):

Leonard A. Jason ◽

Renee R. Taylor ◽

Judith A. Richman

Keyword(s):

Chronic Health Condition ◽

Health Condition ◽

Chronic Health

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Action learning as a catalyst for change: the wicked problem of employment with a chronic health condition

Action Learning Research and Practice ◽

10.1080/14767333.2021.1986898 ◽

2021 ◽

pp. 1-8

Author(s):

Hannah Vaughan ◽

Tricia Jolliffe

Keyword(s):

Action Learning ◽

Chronic Health Condition ◽

Health Condition ◽

Wicked Problem ◽

Chronic Health

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Major depressive disorder, suicidal behaviour, bipolar disorder, and generalised anxiety disorder among emerging adults with and without chronic health conditions

Epidemiology and Psychiatric Sciences ◽

10.1017/s2045796015000700 ◽

2015 ◽

Vol 25 (5) ◽

pp. 462-474 ◽

Cited By ~ 19

Author(s):

M. A. Ferro

Keyword(s):

Bipolar Disorder ◽

Mental Disorder ◽

Emerging Adults ◽

Chronic Health Condition ◽

Health Condition ◽

Chronic Health Conditions ◽

Health Conditions ◽

Generalised Anxiety Disorder ◽

Major Depressive ◽

Chronic Health

Background.Despite the considerable physical, emotional and social change that occurs during emerging adulthood, there is little research that examines the association between having a chronic health condition and mental disorder during this developmental period. The aims of this study were to examine the sex-specific prevalence of lifetime mental disorder in an epidemiological sample of emerging adults aged 15–30 years with and without chronic health conditions; quantify the association between chronic health conditions and mental disorder, adjusting for sociodemographic and health factors; and, examine potential moderating and mediating effects of sex, level of disability and pain.Method.Data come from the Canadian Community Health Survey-Mental Health. Respondents were 15–30 years of age (n = 5947) and self-reported whether they had a chronic health condition. Chronic health conditions were classified as: respiratory, musculoskeletal/connective tissue, cardiovascular, neurological and endocrine/digestive. The World Health Organization Composite International Diagnostic Interview 3.0 was used to assess the presence of mental disorder (major depressive disorder, suicidal behaviour, bipolar disorder and generalised anxiety disorder).Results.Lifetime prevalence of mental disorder was significantly higher for individuals with chronic health conditions compared with healthy controls. Substantial heterogeneity in the prevalence of mental disorder was found in males, but not in females. Logistic regression models adjusting for several sociodemographic and health factors showed that the individuals with chronic health conditions were at elevated risk for mental disorder. There was no evidence that the level of disability or pain moderated the associations between chronic health conditions and mental disorder. Sex was found to moderate the association between musculoskeletal/connective tissue conditions and bipolar disorder (β = 1.71, p = 0.002). Exploratory analyses suggest that the levels of disability and pain mediate the association between chronic health conditions and mental disorder.Conclusions.Physical and mental comorbidity is prevalent among emerging adults and this relationship is not augmented, but may be mediated, by the level of disability or pain. Findings point to the integration and coordination of public sectors – health, education and social services – to facilitate the prevention and reduction of mental disorder among emerging adults with chronic health conditions.

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Shared Vision: Concordance Among Fathers, Mothers, and Pediatricians About Unmet Needs of Children With Chronic Health Conditions

PEDIATRICS ◽

10.1542/peds.105.s2.277 ◽

2000 ◽

Vol 105 (Supplement_2) ◽

pp. 277-285

Author(s):

Ellen C. Perrin ◽

Corinne Lewkowicz ◽

Martin H. Young

Keyword(s):

Primary Care Physicians ◽

Unmet Needs ◽

Chronic Health Condition ◽

Health Condition ◽

Shared Vision ◽

Chronic Health Conditions ◽

Health Conditions ◽

Pediatric Practice ◽

Chronic Health ◽

The Face

Objective. These analyses were undertaken to investigate the number and types of services and assistance believed to be useful to children with a chronic health condition and their families. The perspective of mothers, fathers, and primary care physicians were sought separately and compared. Methods. Families that include at least 1 child with a chronic health condition were selected from pediatric practices in Central Massachusetts. All 3 respondents completed a questionnaire describing their own perspective of current needs and of the severity of the child's condition. The 3 perspectives are compared statistically and areas of agreement/disagreement are described. Results. Mothers, fathers, and physicians described children's and families' needs with a surprising degree of concordance. On the other hand, pediatricians identified fewer needs, despite rating the severity of children's illnesses as greater than did parents. Mothers and fathers agreed substantially about the level of severity of their child's condition and about their unmet needs. Conclusions. It is important that pediatric practice systems include effective mechanisms to assess parents' opinions regarding the unmet needs of their child/family in the face of a child with a chronic health condition. Without input from families, pediatricians are aware of only some of the needs that parents identify. Pediatrics 2000;105:277–285;children, chronic health condition.

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Systemic Models of Self-Management

Promoting Self-Management of Chronic Health Conditions ◽

10.1093/med-psych/9780190606145.003.0022 ◽

2017 ◽

pp. 499-520

Keyword(s):

Chronic Care Model ◽

Chronic Health Condition ◽

Health Condition ◽

Self Management ◽

Management Support ◽

Integrated Healthcare ◽

Chronic Health ◽

Policy Analysts ◽

Definition Of

Researchers and healthcare policy analysts have called for systemic change in healthcare systems, because those systems typically do not incorporate long-term planning of chronic health condition care. There is an international movement to create comprehensive, integrated healthcare models that can better assist individuals who have chronic health conditions. This chapter includes a discussion of the definition of self-management support (SMS) and how it is different from self-management, a description of the typical components of SMS interventions, how SMS is different than disease management programs, and some examples of SMS programs. This chapter also covers several systemic models of self-management, including the Chronic Care Model and the Innovative Care for the Chronic Conditions Framework. It ends with brief sections on the economic reasons to promote SMS and integrated healthcare and on the future of self-management.

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