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      The influence of spirituality on decision-making in palliative care outpatients: a cross-sectional study

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          Abstract

          Background

          Decision-making in palliative care can be complex due to the uncertain prognosis and general fear surrounding decisions. Decision-making in palliative care may be influenced by spiritual and cultural beliefs or values. Determinants of the decision-making process are not completely understood, and spirituality is essential for coping with illness. Thus, this study aims to explore the influence of spirituality on the perception of healthcare decision-making in palliative care outpatients.

          Methods

          A cross-sectional study was developed. A battery of tests was administered to 95 palliative outpatients, namely: sociodemographic questionnaire (SQ), Decisional Conflict Scale (DCS), Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-Sp), and a semi-structured interview (SSI) to study one’s perception of spirituality and autonomy in decision-making. Statistical analyses involved descriptive statistics for SQ and SSI. The Mann-Whitney test was used to compare scale scores between groups and correlations were used for all scales and subscales. The analysis of patients’ definitions of spirituality was based on the interpretative phenomenological process.

          Results

          Spiritual wellbeing significantly correlated with greater levels of physical, emotional and functional wellbeing and a better quality of life. Greater spiritual wellbeing was associated with less decisional conflict, decreased uncertainty, a feeling of being more informed and supported and greater satisfaction with one’s decision. Most patients successfully implemented their decision and identified themselves as capable of early decision-making. Patients who were able to implement their decision presented lower decisional conflict and higher levels of spiritual wellbeing and quality of life. Within the 16 themes identified, spirituality was mostly described through family. Patients who had received spiritual care displayed better scores of spiritual wellbeing, quality of life and exhibited less decisional conflict. Patients considered spirituality during illness important and believed that the need to receive spiritual support and specialised care could enable decision-making when taking into consideration ones’ values and beliefs.

          Conclusion

          The impact of spiritual wellbeing on decision-making is evident. Spirituality is a key component of overall wellbeing and it assumes multidimensional and unique functions. Individualised care that promotes engagement in decision-making and considers patients’ spiritual needs is essential for promoting patient empowerment, autonomy and dignity.

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          Most cited references67

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          A biopsychosocial-spiritual model for the care of patients at the end of life.

          This article presents a model for research and practice that expands on the biopsychosocial model to include the spiritual concerns of patients. Literature review and philosophical inquiry were used. The healing professions should serve the needs of patients as whole persons. Persons can be considered beings-in-relationship, and illness can be considered a disruption in biological relationships that in turn affects all the other relational aspects of a person. Spirituality concerns a person's relationship with transcendence. Therefore, genuinely holistic health care must address the totality of the patient's relational existence-physical, psychological, social, and spiritual. The literature suggests that many patients would like health professionals to attend to their spiritual needs, but health professionals must be morally cautious and eschew proselytizing in any form. Four general domains for measuring various aspects of spirituality are distinguished: religiosity, religious coping and support, spiritual well-being, and spiritual need. A framework for understanding the interactions between these domains is presented. Available instruments are reviewed and critiqued. An agenda for research in the spiritual aspects of illness and care at the end of life is proposed. Spiritual concerns are important to many patients, particularly at the end of life. Much work remains to be done in understanding the spiritual aspects of patient care and how to address spirituality in research and practice.
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            The Interpretative Phenomenological Analysis (IPA): A Guide to a Good Qualitative Research Approach

            As a research methodology, qualitative research method infuses an added advantage to the exploratory capability that researchers need to explore and investigate their research studies. Qualitative methodology allows researchers to advance and apply their interpersonal and subjectivity skills to their research exploratory processes. However, in a study with an interpretative phenomenological analysis (IPA) approach, the advantageous elements of the study quadruple because of the bonding relationship that the approach allows for the researchers to develop with their research participants. Furthermore, as a qualitative research approach, IPA gives researchers the best opportunity to understand the innermost deliberation of the ‘lived experiences’ of research participants. As an approach that is ‘participant-oriented’, interpretative phenomenological analysis approach allows the interviewees (research participants) to express themselves and their ‘lived experience’ stories the way they see fit without any distortion and/or prosecution. Therefore, utilizing the IPA approach in a qualitative research study reiterates the fact that its main objective and essence are to explore the ‘lived experiences’ of the research participants and allow them to narrate the research findings through their ‘lived experiences’. As such, this paper discusses the historical background of phenomenology as both a theory and a qualitative research approach, an approach that has transitioned into an interpretative analytical tradition. Furthermore, as a resource tool to novice qualitative researchers, this paper provides a step-by-step comprehensive guide to help prepare and equip researchers with ways to utilize and apply the IPA approach in their qualitative research studies.  More importantly, this paper also provides an advanced in-depth analysis and usability application for the IPA approach in a qualitatively conducted research study. As such, this paper completely contrasted itself from many books and articles that are written with the premise of providing useful and in-depth information on the subject-matter (phenomenology, as a qualitative approach).
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              Dignity in the terminally ill: a cross-sectional, cohort study.

              Considerations of dignity are often raised in reference to the care of dying patients. However, little research that addresses this issue has been done. Our aim was to identify the extent to which dying patients perceive they are able to maintain a sense of dignity, and to ascertain how demographic and disease-specific variables relate to the issue of dignity in these individuals. We did a cross-sectional study of a cohort of terminally ill patients with cancer, who had a life expectancy of less than 6 months. We enrolled 213 patients from two palliative care units in Winnipeg, Canada, and asked them to rate their sense of dignity. Our main outcome measures included: a 7-point sense of dignity item; the symptom distress scale; the McGill pain questionnaire; the index of independence in activities of daily living (IADL); a quality of life scale; a brief battery of self-report measures, including screening for desire for death, anxiety, hopelessness, and will to live; burden to others; and requirement for social support. 16 of 213 patients (7.5%; 95% CI 4-11) indicated that loss of dignity was a great concern. These patients were far more than likely than the rest of the cohort to report psychological distress and symptom distress, heightened dependency needs, and loss of will to live. Loss of dignity is closely associated with certain types of distress often seen among the terminally ill. Preservation of dignity should be an overall aim of treatment and care in patients who are nearing death.
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                Author and article information

                Contributors
                mfrego@med.up.pt
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central (London )
                1472-684X
                21 February 2020
                21 February 2020
                2020
                : 19
                : 22
                Affiliations
                [1 ]ISNI 0000 0001 1503 7226, GRID grid.5808.5, Faculty of Medicine, , University of Porto, ; Alameda Prof. Hernâni Monteiro, 4200-319 Porto, Portugal
                [2 ]ISNI 0000 0004 0631 0608, GRID grid.418711.a, Portuguese Institute of Oncology-Coimbra, , Instituto Português de Oncologia de Coimbra Francisco Gentil, E.P.E., ; Av. Bissaya Barreto 98, 3000-075 Coimbra, Portugal
                [3 ]GRID grid.435544.7, Portuguese Institute of Oncology-Porto, , Instituto Português de Oncologia do Porto Francisco Gill E.P.E., ; Rua Dr. António Bernardino de Almeida, 4200-072 Porto, Portugal
                [4 ]ISNI 0000 0004 0500 6380, GRID grid.20384.3d, Institute for Systems and Computer Engineering, Technology and Science, INESCTEC, ; Rua Dr. Roberto Frias, 4200-465 Porto, Portugal
                [5 ]ISNI 0000 0001 1503 7226, GRID grid.5808.5, Center for Health Technology and Services Research – CINTESIS, , University of Porto, ; Rua Dr. Plácido da Costa, 4200-450 Porto, Portugal
                Author information
                http://orcid.org/0000-0001-8083-7895
                Article
                525
                10.1186/s12904-020-0525-3
                7035674
                32085765
                e983ec20-3d51-4ed7-855d-60e4a2bcf461
                © The Author(s). 2020

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 24 September 2019
                : 12 February 2020
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

                Anesthesiology & Pain management
                autonomy,decision-making,decisional conflict,palliative care,spirituality,spiritual wellbeing

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