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Are family carers part of the care team providing end-of-life care? A qualitative interview study on the collaboration between family and professional carers. 2021

Maarten Vermorgen, and Isabel Vandenbogaerde, and Chantal Van Audenhove, and Peter Hudson, and Luc Deliens, and Joachim Cohen, and Aline De Vleminck
End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.

The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context. This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life. Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data. A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness. Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes. This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.

UI MeSH Term Description Entries
D010166 Palliative Care Care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed) Palliative Treatment,Palliative Supportive Care,Palliative Surgery,Palliative Therapy,Surgery, Palliative,Therapy, Palliative,Care, Palliative,Palliative Treatments,Supportive Care, Palliative,Treatment, Palliative,Treatments, Palliative
D010348 Patient Care Team Care of patients by a multidisciplinary team usually organized under the leadership of a physician; each member of the team has specific responsibilities and the whole team contributes to the care of the patient. Health Care Team,Interdisciplinary Health Team,Medical Care Team,Multidisciplinary Care Team,Multidisciplinary Health Team,Healthcare Team,Care Team, Health,Care Team, Medical,Care Team, Multidisciplinary,Care Team, Patient,Care Teams, Health,Care Teams, Patient,Health Care Teams,Health Team, Interdisciplinary,Health Team, Multidisciplinary,Healthcare Teams,Interdisciplinary Health Teams,Medical Care Teams,Multidisciplinary Care Teams,Multidisciplinary Health Teams,Patient Care Teams,Team, Health Care,Team, Healthcare,Team, Interdisciplinary Health,Team, Medical Care,Team, Multidisciplinary Care,Team, Multidisciplinary Health,Team, Patient Care,Teams, Interdisciplinary Health
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D013727 Terminal Care Medical and nursing care of patients in the terminal stage of an illness. End-Of-Life Care,End of Life Care,Care, End-Of-Life,Care, Terminal,End-Of-Life Cares
D017028 Caregivers Persons who provide care to those who need supervision or assistance in illness or disability. They may provide the care in the home, in a hospital, or in an institution. Although caregivers include trained medical, nursing, and other health personnel, the concept also refers to parents, spouses, or other family members, friends, members of the clergy, teachers, social workers, fellow patients. Family Caregivers,Informal Caregivers,Spouse Caregivers,Care Givers,Carers,Care Giver,Caregiver,Caregiver, Family,Caregiver, Informal,Caregiver, Spouse,Caregivers, Family,Caregivers, Informal,Caregivers, Spouse,Carer,Family Caregiver,Informal Caregiver,Spouse Caregiver
D017051 Hospice Care Specialized health care, supportive in nature, provided to a dying person. A holistic approach is often taken, providing patients and their families with legal, financial, emotional, or spiritual counseling in addition to meeting patients' immediate physical needs. Care may be provided in the home, in the hospital, in specialized facilities (HOSPICES), or in specially designated areas of long-term care facilities. The concept also includes bereavement care for the family. (From Dictionary of Health Services Management, 2d ed) Bereavement Care,Hospice Programs,Care, Bereavement,Care, Hospice,Hospice Program,Program, Hospice,Programs, Hospice
D036301 Qualitative Research Any type of research that employs nonnumeric information to explore individual or group characteristics, producing findings not arrived at by statistical procedures or other quantitative means. (Qualitative Inquiry: A Dictionary of Terms Thousand Oaks, CA: Sage Publications, 1997) Research, Qualitative

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