Family Caregivers and Palliative Care: Current Status and Agenda for the Future

Centre for Palliative Care, St Vincent's Hospital & Collaborative Centre of The University of Melbourne, Australia.
Journal of palliative medicine (Impact Factor: 1.91). 07/2011; 14(7):864-9. DOI: 10.1089/jpm.2010.0413
Source: PubMed


The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned. The purpose of this review is to outline a succinct and empirically informed account of family caregiving within the context of palliative care and to propose an agenda for the future. The appraisal is underpinned by several systematic reviews, and other seminal publications from the last decade.

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Available from: Sheila Alison Payne, Sep 18, 2015
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    • "Caregiver burden is often experienced by family caregivers of palliative care patients, and has been shown to be an important predictor of anxiety and depression (Grunfeld et al. 2004, Rhee et al. 2008, Papastavrou et al. 2009, Francis et al. 2010), and to be associated with poor physical health (Williams & McCorkle 2011, Shieh et al. 2012, Lee et al. 2013) and reduced quality of life (Hughes et al. 1999, Hudson & Payne 2011, Song et al. 2011). Furthermore, many of these outcomes extend into bereavement, increasing morbidity and mortality (Schulz & Beach 1999, Schulz et al. 2008, Kapari et al. 2010). "
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    ABSTRACT: Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting. © 2015 John Wiley & Sons Ltd.
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    • "Consistent with the findings in other studies (Bernard & Guarnaccia, 2003; Northfield & Nebauer, 2010; Stajduhar et al., 2008), health care professionals perceived that FCs did not view themselves as a legitimate target for support, focusing instead on the patient. It has been claimed that it may be quite untenable for health and social care professionals to improve FC's quality of life, as promoted, for example, by the WHO (Hudson & Payne, 2011), and indeed realistic objectives are needed. However, health care professionals seem to have the potential to make significant changes in the way a FC handles the situation through relatively small efforts. "
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    ABSTRACT: Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals' perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients' in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals' perceptions of FCs during the patient's in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC's needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient.
    Journal of Family Nursing 11/2014; 20(4). DOI:10.1177/1074840714556179 · 1.34 Impact Factor
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    • "In doing so, these family members reported feeling trapped, confined (Bertrand et al. 2006) and duty bound (Bigony 2007, Gr€ aßel & Adabbo 2011). The expectation to take on the caregiver role largely arose at the point of discharge from hospital where a level of taken for granted exists although minimal preparation for assuming the required care is provided (Dow & McDonald 2007, VON Canada & The J. W. McConnell Foundation 2007, Docherty et al. 2008, Stevenson et al. 2008, Hudson & Payne 2011, Innes et al. 2011, Thinnes & Padilla 2011, Llanque & Enriquez 2012). "
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    ABSTRACT: Chronic Illness represents a growing concern in the western world and individuals living with chronic illness are primarily managed at home by family caregivers. A scoping review of the home-care literature (2004-2009; updated with review articles from 2010 to January 2013) on the topic of the caregiver revealed that this group experiences the following safety-related concerns: caregivers are conscripted to the role, experience economic hardship, risk being abused as well as abusing, and may well become patients themselves. Methodology and methods used in the scoping review are presented as well as a brief overview of the findings. The concepts of risk and safety are defined. Risk Society Theory is introduced and used as a lens to view the findings, and to contribute to an understanding of the construction of risk in contemporary health-care.
    Health & Social Care in the Community 05/2013; 22(2). DOI:10.1111/hsc.12056 · 1.15 Impact Factor
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