Family caregivers and palliative care: current status and agenda for the future.
ABSTRACT 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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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; DOI:10.1177/1074840714556179 · 1.57 Impact Factor
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ABSTRACT: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care. A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis. From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work. The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.BMC Palliative Care 04/2015; 14(1):16. DOI:10.1186/s12904-015-0015-1 · 1.79 Impact Factor
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ABSTRACT: caregivers, family, role. Caring for someone in a palliative stage is effortlessly understood as a moral duty and family members are the privileged group for this function 1,2 . Considering that family caregivers ensure the continuity of patient care at home, Palliative Care (PC) teams should understand the role and tasks of their performance and must be prepared to identify and help them to work out their needs, as well as educate them in activities of care and self-care 3,4 . Aim: to analyze the activities and roles undertaken by family caregivers of patients in PC literature. Study Design: A systematic search of the literature published between January 2009 to December 2013. Electronic databases were searched in PubMed, PsycINFO, Scopus and SciELO using the EndNote X7 and Excel software's. Combinations of terms (Palliative care [title]) OR Hospice [Title]) OR End-of-life [Title]) AND Caregivers [Title]) OR family [Title]) AND scroll [Title / Abstract]). Articles only written in English, Portuguese and Spanish were included. What tasks /activities and roles are played by family caregivers of patients in PC? Conclusions • Although universally recognized, the role of the family caregiver is still poorly supported by society, health teams and family systems. • Family members who are close to the patient may play the role of caregiver, well-being enhancer, diversity of tasksulfiller, minimizer and managing suffering (patient and himself), PC facilitator and responsible for the continuity of care, apprentice and participant of health teams. • They also play the role of controller because they often have to take decisions, concerning the sick person. Inclusion Criteria: -Articles published in English, Portuguese and Spanish in scientific journals -Population over 18 years old. Exclusion criteria: -Pediatrics studies, books, doctoral and/or master's degree theses, case studies and literature reviews were excluded. The quality of each article was evaluated by the method presented by Hawker et al. (2002). Tasks / Activities Role Natural role in relation to care, imposed by society (caregiving role) Caring as a moral obligation To be prepared to care the best way possible To be available 24 hours / day Caregiver To keep the hope of the patient To satisfy the patient´s wishes To help (providing a helping relationship) To maintain the marital relationship To support the remaining family To provide religious rituals To participate in patient comfort Well-being Enhancer Transporting the patient to appointments Troubleshoot nutrition and elimination of the patient Making hygiene care to the patient Being with the patient in the hospital To ensure household tasks To continue to work while providing care Massaging the patient To provide and manage medication Diversity of tasks´ fulfiller To cope with the patient´s suffering To play and share emotions To talk with the patient To pray To assist in the dying process To how empathy and understanding Minimizer / Manager of suffering Excluded by title/repeated 596 Excluded by abstract 38 Excluded by full reading 25 PubMed N= 69 PsycINFO N= 506 Potentially relevant articles 70 Potentially relevant articles 32 Included by other references 6 Final selected articles 13 Scielo N= 7 Scopus N= 84 Potentially relevant articles 666 Figure I -Selection process of the articles (identification, screening, eligibility and inclusion) All articles were selected, analyzed and classified by two independent reviewers according to their quality, and there was a third reviewer for situations of doubt or lack of consensus between the two main reviewers.8yh Research Congress of the European Association of Palliative Care; 06/2014