The caregiving perspective in heart failure: a population based study

Patricia M Davidson 0 1 Amy P Abernethy Phillip J Newton 0 Katherine Clark David C Currow 0 Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney , PO Box 123, Level 7, Building 10 Jones Street, Broadway, Sydney, NSW 2007 , Australia 1 School of Nursing, Johns Hopkins University , 525 N. Wolfe Street, Baltimore, MD 21205 , USA Background: Heart failure (HF) is a frequent condition in the elderly and mortality is high. This study sought to describe the profile of those providing care in the community and their needs. Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross sectional survey conducted within the state. Having standardized data to the whole population, the study describes the subset of the population who identify that they actively cared for someone at the end of life with HF in the five years before survey administration. Results: Three hundred and seventy three respondents (2.0% of the whole population; 4.9% of caregivers) reported being a caregiver of someone with HF. There were 84 active caregivers (day-to-day or intermittent hands on caregivers) for people with HF. Mean age for caregivers for those with HF was much higher than other caregivers (55.7 vs 49.4; p < 0.001) with care lasting for an average of 48.9 months (SD 66.2). People caring for those with HF were far less likely to access specialist palliative care services (38.1% vs 60.9%; p < 0.0001) despite having much greater levels of unmet needs for physical care 28.3% vs 14.1%; p = 0.008). Conclusion: Study findings suggest that there is a significant burden placed on caregivers for people with HF over extended periods in the community. There are differences in access to services for these caregivers compared to those dying from other conditions, particularly cancer. - Background Heart failure (HF) is a chronic illness with a poor prognosis [1,2]. In the elderly, caregiving needs are often accentuated and support systems are not always as readily accessible [3]. Increasingly there is interest in developing models of care to support individuals and their families who face dying with HF [1,4,5]. The impact of HF on individuals and health care systems are well described, yet much less is known about the impact of caregiving on informal caregivers, who are commonly family members [6,7]. The physical, psychological and social demands of caregiving can impact adversely on the well-being of caregivers [8]. Hwang and colleagues have noted that care provided for individuals with HF is much more extensive than that provided with usual spousal assistance and support [9]. The increasing emphasis on community based HF management is placing additional pressure on family caregivers [10]. As a consequence, there is an increased stress on carers to provide physical care as well as social and emotional support. As in many other chronic conditions, caregiving has benefits and burdens: on the one hand it represents an opportunity for increased intimacy and connection, yet is also associated with significant burden, constancy of role, poor health outcomes for the caregiver and distress [6]. This is particularly the case if the carer is a spouse or in poor health themselves [11]. Consequently, there is a need to document and explore the role of caregiving in HF in the community [12]. Although there are some universally shared characteristics of caregiving, there are potentially some discrete differences among diagnostic groups of the care recipient. Although the merit of focussing on variable illness trajectories has been challenged [13], there is merit in understanding the extent of unmet needs and comparison of health service utilisation between different caregivers for different diagnoses. Although there has been extensive research on caregivers in many other clinical setting, research is limited in CHF and there are sparse recommendations to address unmet needs for support [14]. Available data suggests that caregiver burden increases if the caregiver experiences poor mental and/or physical health and has limited social and professional support [15]. Patients who are enrolled in specialty disease management programs are likely to have a level of caregiver support whereas those in primary care settings are less likely to have this support underscoring the need to undertake a population based approach to assessing needs. Current guidelines recommendations suggest that interventions to reduce caregiver burden should focus on improving social support as well as control over their situation [16-18]. A comparison of caregivers with cancer, chronic obstructive pulmonary disease and HF demonstrated that caregiver resources not patient diagnosis or illness severity were associated with caregiver burden [19]. The majority of the data involving caregiver is focussed in the hospital and the immediate post discharge period [20], little is known about informal community caregiving in HF, particularly in the period leading to death. In Australia, the average time from referral to a palliative care service to death is 102 days, with 28.5% of people accessing specialist palliative care for longer than six months nationally [21]. In parallel with international trends, the proportion of those people with non-malignant conditions accessing specialist palliative care services is increasing. This study describes the role of caregivers of people with HF from a population perspective, not simply those who access specialist or tertiary services [21]. This is more likely to generate a real world perspective of the increasing numbers of people providing care in the community. Using a population-based approach, the aim of this study was to describe the characteristics of caregivers for people with HF at the end of life and compares these with other caregivers [21]. We have previously reported the findings of the survey related to met and unmet needs, [22] short- and long-term needs [23] and the relationship between perceived comfort and accessing palliative care services [22]. Methods A random annual population-based health survey, the South Australian Health Omnibus Survey, has been conducted annually since 1991 [24]. An omnibus survey is a method of quantitative research using a stratified sample where data on a wide variety of subjects is collected during the same interview. Multiple researchers contribute individual questions while sharing the common demographic data collected from each respondent [21]. The Omnibus Survey is a face-to-face, cross-sectional survey. The survey is administered by a commercial research organisation with government support. There is a cost to researchers for each question included in the survey. Since 2000, information has been collected about the experiences of respondents who had someone close to them die from a life-limiting illness in the five years before responding [21]. A detailed response of the question route is descr (...truncated)