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      Experiences of family caregivers of patients with terminal disease and the quality of end-of-life care received: a mixed methods study

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          Abstract

          The aim of this study was to analyze the perceptions and experiences of relatives of patients dying from a terminal disease with regard to the care they received during the dying process, considering the oncological or non-oncological nature of the terminal disease, and the place where care was provided (at home, emergency department, hospital room, or palliative care unit). For this purpose, we conducted a mixed-methods observational study in which two studies were triangulated, one qualitative using semi-structured interviews ( n = 30) and the other quantitative, using questionnaires ( n = 129). The results showed that the perception of relatives on the quality of care was highly positive in the quantitative evaluation but more critical and negative in the qualitative interview. Experience of the support received and palliative measures was more positive for patients attended in hospital in the case of oncological patients but more positive for those attended at home in the case of non-oncological patients.

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          The qualitative content analysis process.

          Satu Elo, Helvi Kyngäs (2008)
          This paper is a description of inductive and deductive content analysis. Content analysis is a method that may be used with either qualitative or quantitative data and in an inductive or deductive way. Qualitative content analysis is commonly used in nursing studies but little has been published on the analysis process and many research books generally only provide a short description of this method. When using content analysis, the aim was to build a model to describe the phenomenon in a conceptual form. Both inductive and deductive analysis processes are represented as three main phases: preparation, organizing and reporting. The preparation phase is similar in both approaches. The concepts are derived from the data in inductive content analysis. Deductive content analysis is used when the structure of analysis is operationalized on the basis of previous knowledge. Inductive content analysis is used in cases where there are no previous studies dealing with the phenomenon or when it is fragmented. A deductive approach is useful if the general aim was to test a previous theory in a different situation or to compare categories at different time periods.
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            Designing and conduction mixed methods research

            J Creswell, VL Plano Clark, J. Creswell … (2007)
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              Family perspectives on end-of-life care at the last place of care.

              Joan M Teno, Brian R Clarridge, Virginia Casey … (2004)
              Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home. To evaluate the US dying experience at home and in institutional settings. Mortality follow-back survey of family members or other knowledgeable informants representing 1578 decedents, with a 2-stage probability sample used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked via telephone about the patient's experience at the last place of care at which the patient spent more than 48 hours. Patient- and family-centered end-of-life care outcomes, including whether health care workers (1) provided the desired physical comfort and emotional support to the dying person, (2) supported shared decision making, (3) treated the dying person with respect, (4) attended to the emotional needs of the family, and (5) provided coordinated care. For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services. About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively). Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P<.001). Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.
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                Author and article information

                Contributors
                Manuel Fernández-Alcántara
                Journal
                Journal ID (nlm-ta): PeerJ
                Journal ID (iso-abbrev): PeerJ
                Journal ID (publisher-id): peerj
                Journal ID (pmc): peerj
                Title: PeerJ
                Publisher: PeerJ Inc. (San Diego, USA )
                ISSN (Electronic): 2167-8359
                Publication date (Electronic): 14 December 2020
                Publication date Collection: 2020
                Volume: 8
                Electronic Location Identifier: e10516
                Affiliations
                [1 ]Department of Nursing, University of Málaga , Málaga, Spain
                [2 ]Mind, Brain and Behaviour Research Center (CIMCYC), University of Granada , Granada, Spain
                [3 ]Department of Health Psychology, University of Alicante , Alicante, Spain
                [4 ]Distrito sanitario Granada-Metropolitano de Atención Primaria , Granada, Spain
                [5 ]Hospital General Universitario Virgen de las Nieves , Granada, Spain
                [6 ]Department of Nursing, University of Granada , Granada, Spain
                Article
                Publisher ID: 10516
                DOI: 10.7717/peerj.10516
                PMC ID: 7745673
                PubMed ID: 33362972
                SO-VID: b26b5dc7-c516-4e42-85cc-58a2fcd7c635
                Copyright © ©2020 Martí-García et al.
                License:

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, reproduction and adaptation in any medium and for any purpose provided that it is properly attributed. For attribution, the original author(s), title, publication source (PeerJ) and either DOI or URL of the article must be cited.

                History
                Date received : 15 June 2020
                Date accepted : 17 November 2020
                Funding
                Funded by: Health Ministry of the Junta de Andalucía
                Funded by: Variability of clinical practice and conditioning factors in the implementation of end-of-life care processes
                Award ID: PI-0670 -2010
                This study is part of a research project financed in a public and competitive call by the Health Ministry of the Junta de Andalucía (Variability of clinical practice and conditioning factors in the implementation of end-of-life care processes, Ref no PI-0670 -2010). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Subject: Geriatrics
                Subject: Nursing
                Subject: Oncology
                Subject: Psychiatry and Psychology
                Subject: Palliative Care

                Keywords: palliative care,qualitative,mixed methods,bereavement,relatives,end-of-life care,caregiver
                Data availability:
                Keywords: palliative care, qualitative, mixed methods, bereavement, relatives, end-of-life care, caregiver

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