Delimiting Family in Syntheses of Research on Childhood Chronic Conditions and Family Life

Chronic physical and mental illnesses are an important contributor to childhood morbidity. National survey data indicate that childhood chronic illnesses result in more than 35 million bed days and 40 million school absence days annually.1 There is also evidence to suggest that the burden of chronic illness is growing for children.2-4 Specifically, advances in diagnosis and treatment have dramatically changed mortality rates for children with chronic conditions, with the result that many children with life-threatening chronic conditions now survive into adulthood.5,6 In addition, a new class of childhood conditions, often referred to as the "new morbidities," has emerged in recent years.4,7 Despite concern about the welfare of this population, relatively little is known about the prevalence of childhood chronic conditions or their impact, especially for minority youth. Past studies have often categorized minority populations into the general and nonspecific category of "nonwhite." Alternatively some studies have reported results only for white and black children; hence published information is particularly sparse on chronic illness among Hispanic, Asian, and Native American children. Previous studies that have examined racial and ethnic variations in the prevalence of childhood chronic conditions can be divided into those that are based on household interviews, those based on medical records, and those based on birth-defects-monitoring systems. The results for some of the larger studies are summarized in Table 1. Excluded from this table are disease-specific studies. Only a few household interview studies have reported results concerning racial and ethnic differences in prevalence of chronic conditions. One of the earliest household interview studies to explore racial differences derived data from a survey of parents in Alamance County, North Carolina.8

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Research priorities for childhood chronic conditions: a workshop report

Archives of Disease in Childhood ◽

10.1136/archdischild-2018-315628 ◽

2018 ◽

Vol 104 (3) ◽

pp. 237-245 ◽

Cited By ~ 2

Author(s):

Pamela Lopez-Vargas ◽

Allison Tong ◽

Sally Crowe ◽

Stephen I Alexander ◽

Patrina Ha Yuen Caldwell ◽

...

Keyword(s):

Health Professionals ◽

Chronic Conditions ◽

Chronic Condition ◽

Research Priorities ◽

Well Being ◽

Financial Loss ◽

Paediatric Hospital ◽

Health And Social Care ◽

Consumer Organisations ◽

Childhood Chronic Conditions

BackgroundChronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy.ObjectiveTo identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices.SettingAn Australian paediatric hospital and health consumer organisations.MethodsRecruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed.ResultsSeventy-eight research questions were identified. Five themes underpinned participants’ priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services).ConclusionResearch priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.

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