Framing the Public Health of Caregiving

Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Rd, E-88, Atlanta, GA 30333, USA.
American Journal of Public Health (Impact Factor: 4.55). 03/2007; 97(2):224-8. DOI: 10.2105/AJPH.2004.059337
Source: PubMed


Caregiving has only recently been acknowledged by the nation as an important topic for millions of Americans. A psychological or sociological approach to care-giving services has been most often applied, with little attention to the population-based public health outcomes of caregivers. We conceptualize caregiving as an emerging public health issue involving complex and fluctuating roles. We contend that caregiving must be considered in the context of life span needs that vary according to the ages, developmental levels, mental health needs, and physical health demands of both caregivers and care recipients.

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Available from: Ronda Carol Talley, Aug 13, 2014
    • "Clinically, most care systems are organized to meet the needs of the individual patients; the needs of family caregivers are rarely addressed (Karst and Van Hecke, 2012). Family caregiving is an emerging public health concern with multifaceted psychological, social, and economic implications (Talley and Crews, 2007). A better understanding of family wellbeing of individuals with ASD is essential for effective policy and practice. "
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    • "Framing theory uses conceptual constructs to link to people's core values and beliefs (Entman, 1993). To commence policymaking, public health issues are framed in terms of cause and perceived risk (Talley and Crews, 2007). Stone (Stone, 1989) proposes that political actors deliberately compose stories to determine cause, link risk with an identifiable agent and influence audience perception to gain support. "
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    • "Implications of dependency, in terms of supportive care arrangements, have different contexts in high-income countries and in LMICs. High income countries support formal caregiving to dependent older people through institutional or home aided health services and social services [4]. However, the dependent older people in many LMICs rely on their family members due to the absence of social security systems and of any formal care support. "
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    ABSTRACT: Background Lack of state supported care services begets the informal caregiving by family members as the mainstay of care provided to the dependent older people in many Low and Middle Income Countries (LMICs), including India. Little is known about the time spent on caregiving, its cost and the burden experienced by these informal caregivers. We aimed to estimate the costs of informal caregiving and to evaluate the nature as well as correlates of caregivers’ burden in a rural Indian community. Methods We assessed 1000 people aged above 65 years, among whom 85 were dependent. We assessed their socioeconomic profiles, disability, health status and health expenditures. Their caregivers’ socio-demographic profiles, mental health, and the time spent on caregiving were assessed using standard instruments. Caregiver’s burden was evaluated using Zarit Burden Scale. We valued the annual informal caregiving costs using proxy good method. We employed appropriate non-parametric multivariate statistics to evaluate the correlates of caregivers’ burden. Results Average time spent on informal caregiving was 38.6 (95% CI 35.3-41.9) hours/week. Estimated annual cost of informal caregiving using proxy good method was 119,210 US$ in this rural community. Mean total score of Zarit burden scale, measuring caregivers’ burden, was 17.9 (95% CI 15.6-20.2). Prevalence of depression among the caregivers was 10.6% (95% CI 4.1-17.1%). Cerebrovascular disease, Parkinson’s disease, higher disability, insomnia and incontinence of the dependent older people as well as the time spent on helping Activities of Daily Living and on supervision increased caregiver's burden significantly. Conclusions Cost and burden of informal caregiving are high in this rural Indian community. Many correlates of burden, experienced by caregivers, are modifiable. We discuss potential strategies to reduce this burden in LMICs. Need for support to informal caregivers and for management of dependent older people with chronic disabling diseases by multidisciplinary community teams are highlighted.
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