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      Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers

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          The determinants of home and nursing home death: a systematic review and meta-analysis

          Background Most Canadians die in hospital, and yet, many express a preference to die at home. Place of death is the result of the interaction among sociodemographic, illness- and healthcare-related factors. Although home death is sometimes considered a potential indicator of end-of-life/palliative care quality, some determinants of place of death are more modifiable than others. The objective of this systematic review was to evaluate the determinants of home and nursing home death in adult patients diagnosed with an advanced, life-limiting illness. Methods A systematic literature search was performed for studies in English published from January 1, 2004 to September 24, 2013 that evaluated the determinants of home or nursing home death compared to hospital death in adult patients with an advanced, life-limiting condition. The adjusted odds ratios, relative risks, and 95 % confidence intervals of each determinant were extracted from the studies. Meta-analyses were performed if appropriate. The quality of individual studies was assessed using the Newcastle-Ottawa scale and the body of evidence was assessed according to the GRADE Working Group criteria. Results Of the 5,900 citations identified, 26 retrospective cohort studies were eligible. The risk of bias in the studies identified was considered low. Factors associated with an increased likelihood of home versus hospital death included multidisciplinary home palliative care, preference for home death, cancer as opposed to other diagnoses, early referral to palliative care, not living alone, having a caregiver, and the caregiver’s coping skills. Conclusions Knowledge about the determinants of place of death can be used to inform care planning between healthcare providers, patients and family members regarding the feasibility of dying in the preferred location and may help explain the incongruence between preferred and actual place of death. Modifiable factors such as early referral to palliative care, presence of a multidisciplinary home palliative care team were identified, which may be amenable to interventions that improve the likelihood of a patient dying in the preferred location. Place of death may not be a very good indicator of the quality of end-of-life/palliative care since it is determined by multiple factors and is therefore dependent on individual circumstances. Electronic supplementary material The online version of this article (doi:10.1186/s12904-016-0077-8) contains supplementary material, which is available to authorized users.
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            Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients.

            Support for family caregivers, including bereavement follow-up, is a core function of palliative care. Many caregivers acknowledge positive aspects associated with the role; however a considerable proportion will experience poor psychological, social, financial, spiritual, and physical well-being and some will suffer from complicated grief. Many family caregivers have unmet needs and would like more information, preparation, and support to assist them in the caregiving role. There is a shortage of evidence-based strategies to guide health professionals in providing optimal support while the caregiver is providing care and after the patient's death. To develop clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. (1) Literature review; (2) focus groups and structured interviews with key stakeholders within Australia; (3) national and international expert opinion to further develop and refine the guidelines using a modified Delphi process; and (4) endorsement of the guidelines from key palliative care, caregiver, and bereavement organizations (national and international). The guidelines were developed for multidisciplinary health care professionals and clinical services commonly involved in caring for adult patients receiving palliative care in a variety of care sites throughout Australia. These consensus-based guidelines have been endorsed key Australian and international organizations. The guidelines may prove valuable for the international palliative care community and for generalist health care providers who occasionally care for palliative care patients. Research is recommended to explore the uptake, implementation, and effectiveness of the guidelines.
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              Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home.

              Dying at home is a goal promoted by many healthcare providers and governments as a way to enhance the dying experience for cancer patients and their family members. A key element to realizing this goal is the availability of a family member who is willing to provide care at home. Little research has been conducted on the factors that influence family caregivers' ability to cope with providing end-of-life cancer care at home. The purpose of this qualitative study was to describe factors influencing family caregivers' ability to cope with providing such care. An interpretive descriptive research design guided this study. Semistructured interviews with 29 active family caregivers were conducted and thematically analyzed. Our findings suggest 5 factors that influenced the caregivers' ability to cope: (1) the caregiver's approach to life, (2) the patient's illness experience, (3) the patient's recognition of the caregivers' contribution to his or her care, (4) the quality of the relationship between the caregiver and the dying person, and (5) the caregiver's sense of security. Findings provide important information to assist in informing health services and policies directed at enhancing family caregivers' coping abilities.

                Author and article information

                Palliative Medicine
                Palliat Med
                SAGE Publications
                July 02 2018
                September 2018
                June 2018
                September 2018
                : 32
                : 8
                : 1410-1418
                [1 ]European Palliative Care Research Centre (PRC), Department of Cancer Research and Molecular Medicine, Norwegian University of Science and Technology (NTNU), Trondheim, Norway
                [2 ]St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway
                [3 ]Center of Diakonia and Professional Practice, VID Specialized University, Oslo, Norway
                [4 ]Division of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, England
                [5 ]Cancer Clinic, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway
                [6 ]Department of Oncology, Oslo University Hospital, Oslo, Norway
                © 2018




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