Abstract
BackgroundInformal caregivers provide a significant part of the total care needed by ill or disabled persons. Although informal care is often the preferred option of those who provide and those who receive informal care, caring can nevertheless be very straining. This study investigates construct validation of an instrument of the impact of caregiving, the CarerQol.MethodsData was collected among adult caregivers (n = 1,244) selected from the general population using an online questionnaire in October 2010, in the Netherlands. The CarerQol measures and values the impact of informal care. The CarerQol measures subjective burden (CarerQol-7D) and well-being (CarerQol-VAS). Construct validation comprised clinical, convergent and discriminative validity tests.ResultsClinical validity was supported by statistically significant associations of CarerQol-VAS and caregivers’ health, income and employment status, care recipients’ health, and the relationship between caregiver and care recipient. Convergent validity was supported by positive associations of CarerQol-VAS with the two positive CarerQol-7D dimensions (fulfillment and support) and negative associations with the five negative CarerQol-7D dimensions (relational problems, mental health problems, problems combining daily activities, financial problems and physical health problems). Moreover, CarerQol-VAS was negatively associated with other instruments measuring caregiving burden.ConclusionsConstruct validity tests in a large, heterogeneous sample of caregivers show that the CarerQol validly measures the impact of caregiving. The CarerQol can be used in informal care research and economic evaluations of health care interventions. Hence, its use can facilitate informed decision making in health care.
Highlights
Informal caregivers provide a significant part of the total care needed by ill or disabled persons
Informal care is an important part of total care, especially in the context of chronic illness and frailty due to ageing, and is often provided voluntarily by family, friends or acquaintances
Policymakers remain ignorant of the impact of interventions in health care on informal caregivers and risk making non-optimal decisions
Summary
Informal caregivers provide a significant part of the total care needed by ill or disabled persons. Informal care is often the preferred option of those who provide and those who receive informal care, caring can be very straining. Informal care may reduce the pressure on the capacity and budget of formal health care [2,3,4]. It may be preferred by both patient and informal caregiver over formal care [5]. Policymakers remain ignorant of the impact of interventions in health care on informal caregivers and risk making non-optimal decisions
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