The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research.
TL;DR: The aim of this study was to synthesize qualitative literature on spirituality and spiritual care at the end of life using a systematic (‘meta-study’) review, incorporating data from 178 patients and 116 healthcare providers, mainly from elderly White and Judaeo-Christian origin patients with cancer.
Abstract: Spirituality and spiritual care are gaining increasing attention but their potential contribution to palliative care remains unclear. The aim of this study was to synthesize qualitative literature on spirituality and spiritual care at the end of life using a systematic (‘meta-study’) review.
Eleven patient articles and eight with healthcare providers were included, incorporating data from 178 patients and 116 healthcare providers, mainly from elderly White and Judaeo-Christian origin patients with cancer. Spirituality principally focused on relationships, rather than just meaning making, and was given as a relationship. Spirituality was a broader term that may or may not encompass religion. A ‘spirit to spirit’ framework for spiritual care-giving respects individual personhood. This was achieved in the way physical care was given, by focusing on presence, journeying together, listening, connecting, creating openings, and engaging in reciprocal sharing. Affirmative relationships supported patients, enabling them to respond to their spiritual needs. The engagement of family caregivers in spiritual care appears underutilized. Relationships formed an integral part of spirituality as they were a spiritual need, caused spiritual distress when broken and were the way spiritual care was given. Barriers to spiritual care include lack of time, personal, cultural or institutional factors, and professional educational needs. By addressing these, we may make an important contribution to the improvement of patient care towards the end of life.
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TL;DR: Despite the difficulty in clearly defining and measuring spirituality, a growing literature describes its importance in oncology and survivorship, and practices such as mindfulness have been shown to enhance clinician self‐care and equanimity.
Abstract: Despite the difficulty in clearly defining and measuring spirituality, a growing literature describes its importance in oncology and survivorship. Religious/spiritual beliefs influence patients' decision-making with respect to both complementary therapies and aggressive care at the end of life. Measures of spirituality and spiritual well-being correlate with quality of life in cancer patients, cancer survivors, and caregivers. Spiritual needs, reflective of existential concerns in several domains, are a source of significant distress, and care for these needs has been correlated with better psychological and spiritual adjustment as well as with less aggressive care at the end of life. Studies show that while clinicians such as nurses and physicians regard some spiritual care as an appropriate aspect of their role, patients report that they provide it infrequently. Many clinicians report that their religious/spiritual beliefs influence their practice, and practices such as mindfulness have been shown to enhance clinician self-care and equanimity. Challenges remain in the areas of conceptualizing and measuring spirituality, developing and implementing training for spiritual care, and coordinating and partnering with chaplains and religious communities.
188 citations
TL;DR: Professional caregivers may initiate ACP early if strategies carefully consider timing and family and patient receptiveness or reluctance, and areFamily and patient-centered.
Abstract: Background: Planning ahead may be particularly relevant in dementia considering patients' cognitive decline and difficulty to predict the course of the dementia. Objective: To identify factors associated with initiation of advance care planning (ACP) regarding end-of-life issues in dementia. Methods: Systematic review of the PubMed, Embase, Cinahl, Psychinfo, and Cochrane databases until January 2013. We included articles reporting on empirical research, identifying factors related to initiation of ACP defined as starting a discussion, starting the decision making, or having a documented patient-written advance directive. Results: Of 4,647 unique articles, we assessed 178 as full-texts, and included 33. Most designs (64%) were qualitative; 42% limited to moderate to severe, and 6% to mild to moderate stages. Perspectives varied: family (33%), professional caregivers (24%), patient (15%), or multiple (27%). A variety of factors with complex interplay was involved in initiating ACP. Family factors dominated, with family's initiative or lack of it, and willingness or reluctance to engage in initiating ACP identified in a series of studies. Further, professional caregivers' initiative or lack of it and patient's health status were important factors that facilitated or hindered initiating ACP. Ethnic minority status of those involved and family distance may be barriers. Continuity of care and health care system factors also affected initiating of ACP. Conclusion: Professional caregivers may initiate ACP early if strategies carefully consider timing and family and patient receptiveness or reluctance, and are family and patient-centered. Interventions should address the complexity of interrelated system and personal factors affecting initiation of ACP. © 2014 IOS Press and the authors. All rights reserved.
135 citations
Cites background from "The understanding of spirituality a..."
...The sensitivity and individuality of the subject may be reflected in the type of facilitators we identified; some, such as taking ample time to listen and professional and personal life experience with serious illness or death overlapped with facilitators of spiritual care giving [57, 58]....
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TL;DR: In this article, the authors present evidence to inform spiritual care practices in palliative care in advanced disease, but often neglected, resulting in unnecessary suffering, and conclude that spiritual distress is prevalent in advanced diseases.
Abstract: Background:Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.Ai...
131 citations
TL;DR: It was observed that when patients are close to death, faith is a more important component of spirituality than meaning/peace, and this reiterates the importance of faith in end-of-life care.
Abstract: The purpose of this study was to show the different components of spirituality in the last few weeks of life for advanced cancer patients admitted to hospice and to evaluate quality of life (QoL), pain, anxiety, depression and psychological adjustment to cancer. One hundred and fifteen patients were interviewed with a series of rating scales: the Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being Scale, the Hospital Anxiety and Depression Scale, the Visual Analogue Scale for pain, the Brief Coping Orientation to Problem Experienced and the Functional Assessment of Cancer Therapy Scale - General Measure. Workers and single patients with higher education level showed a worse QoL. Moreover, anxiety and pain were negatively associated with QoL, while spirituality and 'Instrumental Support' coping style were positively associated with QoL. In the Italian sample, it was observed that when patients are close to death, faith is a more important component of spirituality than meaning/peace. This study confirms that QoL could be related to physical and psychological symptoms, and this reiterates the importance of faith in end-of-life care.
130 citations
TL;DR: Palliative care nurses' spiritual perspectives influenced their spiritual caring, and these nurses were older and more career-advanced than the acute care RNs, which may explain the differences observed.
Abstract: Aims and objectives. Identify and compare spiritual caring practice by palliative care and acute care registered nurses (RNs), determine any correlation between nurses’ spiritual perspective and their spiritual caring, and to investigate perceived barriers to spiritual caring.
Background. Over the past decade there has been growing interest in spiritual caring in nursing. Professional nursing bodies have proposed spirituality and spiritual caring as an integral component of holistic nursing.
Design. Cross sectional study.
Methods. Palliative care RNs (n = 42) from one community palliative care service and three hospices, and acute care RNs (n = 50) from three major acute care hospitals all in metropolitan Sydney, Australia completed a research questionnaire. Two validated tools and a demographic survey were used to collect data. These tools measured spiritual perspectives including saliency of personal spirituality, spiritual views and engagement in spiritually-related activities; and spiritual practice including assessment, interventions and barriers to spiritual caring. Data were collected over a six-month period and interpreted with both descriptive and analytical statistics.
Results. Significant differences were seen between the two RN groups. Palliative care RNs’ spiritual caring practice was more advanced and their spiritual perspective stronger; this relationship was positive. Both RN groups identified ‘insufficient time’ as the most common barrier to spiritual caring practice; ‘patient privacy’ was also common for acute care RNs.
Conclusions. Palliative care RNs’ spiritual perspectives influenced their spiritual caring. These nurses were older and more career-advanced than the acute care RNs, which may explain the differences observed. Acute care RNs may benefit from additional support for their spiritual caring and to address perceived barriers.
Relevance to clinical practice. The development of nurses’ spiritual perspective early in their preparation for practice, and the articulation and documentation of spiritual caring may enhance their spiritual caring practice. Further research on barriers to spiritual caring in acute care nursing environments is recommended.
103 citations
Cites background from "The understanding of spirituality a..."
...2005), and the clinical environments will have helped shape nurses’ specialist practice (Edwards et al. 2010)....
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References
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Book•
01 Jan 2002
TL;DR: In this paper, conceptual issues and themes on qualitative research and evaluaton methods including: qualitative data, triangulated inquiry, qualitative inquiry, constructivism, constructionism, complexity (chaos) theory, qualitative designs and data collection, fieldwork strategies, interviewing, tape-recording, ethical issues, analysis, interpretation and reporting, observations vs. perceived impacts and utilisation-focused evaluation reporting.
Abstract: This book explains clearly conceptual issues and themes on qualitative research and evaluaton methods including: qualitative data, triangulated inquiry, qualitative inquiry, constructivism, constructionism, Complexity (chaos) theory, qualitative designs and data collection, fieldwork strategies, interviewing, tape-recording, ethical issues, analysis, interpretation and reporting, observations vs. perceived impacts and utilisation-focused evaluation reporting.
13,768 citations
"The understanding of spirituality a..." refers background in this paper
...Conversely, qualitative research is considered the optimal means of understanding sensitive multifaceted areas such as spiritual care.(29) To understand what spirituality means to different individuals, researchers have used qualitative designs in a wide range of studies from the spiritual needs of HIV sufferers,(30,31) for instance, to AfricanAmerican spirituality....
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Book•
01 Jan 1988
TL;DR: In this paper, the idea of a meta-ethnography was introduced and a Meta-Ethnographic Approach was proposed to construct META-ETHNOGRAPHIES Reciprocal Translations as Synthesis this paper.
Abstract: PART ONE: INTRODUCTION The Idea of a Meta-Ethnography A Meta-Ethnographic Approach PART TWO: CONSTRUCTING META-ETHNOGRAPHIES Reciprocal Translations as Synthesis Refutational Synthesis Lines-of-Argument Synthesis Inscribing Meta-Ethnographies
2,454 citations
"The understanding of spirituality a..." refers methods in this paper
...We chose meta-ethnography, as opposed to, for example, thematic analysis or grounded theory, to compare and analyse primary research articles, as this method has a systematic approach that considers the creative flexibility of qualitative research, without undermining the potential for preserving the interpretive properties of the primary data.(45) The data for this analysis were the findings, including quotation excerpts from participants where appropriate, and authors’ discussion and conclusion of each primary research paper....
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TL;DR: An overview and critique of a selection of strategies for synthesising qualitative and quantitative evidence, ranging from techniques that are largely qualitative and interpretive through to techniques that is largely quantitative and integrative.
Abstract: BackgroundThe limitations of traditional forms of systematic review in making optimal use of all forms of evidence are increasingly evident, especially for policy-makers and practitioners. There is...
1,655 citations
"The understanding of spirituality a..." refers background in this paper
...‘Meta-synthesis’ is a generic term describing a family of methodological approaches which are systematic reviews producing interpretive integrations of findings that are themselves interpretive syntheses of data.(37,38) We chose ‘meta-study’ as a form of meta-synthesis with explicit systematic methodology, including guidance on sampling, appraisal and synthesis....
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TL;DR: The major problem yet to be resolved is developing usable and communicable systematic approaches to conducting metasynthesis projects that maintain the integrity of individual studies.
Abstract: There has been an accumulation of qualitative studies in recent years, but little cumulation of the understandings gained from them. Qualitative research appears endangered both by efforts to synthesize studies and by the failure to do so. Techniques used have included reciprocal translations of key metaphors and concepts and qualitative and quantitative comparative analyses to produce narrative and theoretical integrations. The major problem yet to be resolved is developing usable and communicable systematic approaches to conducting metasynthesis projects that maintain the integrity of individual studies.
1,010 citations
TL;DR: Many advanced cancer patients' spiritual needs are not supported by religious communities or the medical system, and spiritual support is associated with better QOL.
Abstract: Purpose Religion and spirituality play a role in coping with illness for many cancer patients. This study examined religiousness and spiritual support in advanced cancer patients of diverse racial/ethnic backgrounds and associations with quality of life (QOL), treatment preferences, and advance care planning. Methods The Coping With Cancer study is a federally funded, multi-institutional investigation examining factors associated with advanced cancer patient and caregiver well-being. Patients with an advanced cancer diagnosis and failure of first-line chemotherapy were interviewed at baseline regarding religiousness, spiritual support, QOL, treatment preferences, and advance care planning. Results Most (88%) of the study population (N = 230) considered religion to be at least somewhat important. Nearly half (47%) reported that their spiritual needs were minimally or not at all supported by a religious community, and 72% reported that their spiritual needs were supported minimally or not at all by the medi...
851 citations
"The understanding of spirituality a..." refers background in this paper
...While spiritual support is associated with better quality of life, patients have unmet spiritual needs.(25,27) Many patients consider it important to enquire or attend to their spiritual or religious beliefs and concerns....
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