The EORTC Quality of Life Group has just completed the final phase (field-testing and validation) of an international project to develop a stand-alone measure of spiritual well-being (SWB) for palliative cancer patients. Participants (n = 451)-from 14 countries on four continents; 54% female; 188 Christian; 50 Muslim; 156 with no religion-completed a provisional 36-item measure of SWB plus the EORTC QLQ-C15-PAL (PAL), then took part in a structured debriefing interview. All items showed good score distribution across response categories. We assessed scale structure using principal component analysis and Rasch analysis, and explored construct validity, and convergent/divergent validity with the PAL. Twenty-two items in four scoring scales (Relationship with Self, Relationships with Others, Relationship with Someone or Something Greater, and Existential) explained 53% of the variance. The measure also includes a global SWB item and nine other items. Scores on the PAL global quality-of-life item and Emotional Functioning scale weakly-moderately correlated with scores on the global SWB item and two of the four SWB scales. This new validated 32-item SWB measure addresses a distinct aspect of quality-of-life, and is now available for use in research and clinical practice, with a role as both a measurement and an intervention tool.
Falling seriously ill is often experienced as a life event that causes conflict with people's personal goals and expectations in life and evokes existential questions. This article presents a new humanities approach to the way people make meaning of such events and how this influences their quality of life. Incorporating theories on contingency, narrative identity, and quality of life, we developed a theoretical model entailing the concepts life event, worldview, ultimate life goals, experience of contingency, narrative meaning making, narrative integration, and quality of life. We formulate testable hypotheses and describe the self-report questionnaire that was developed based on the model.
Directly after the intervention, spiritual interventions had a moderate beneficial effect in terms of improving quality of life of cancer patients compared with that of a control group. No evidence was found that the interventions maintained this effect up to 3-6 months after the intervention. Further research is needed to understand how spiritual interventions could contribute to a long-term effect of increasing or maintaining quality of life.
Our study is the first to investigate the different ways of relating to contingency in clinical practice. The defined modes will improve our understanding of the various ways in which cancer patients relate to their disease, allowing caregivers to better target and shape individual care.
Objective
The EORTC QOL Group has recently completed the cross‐cultural development and validation of a standalone measure of spiritual well‐being (SWB) for cancer patients receiving palliative care: the EORTC QLQ‐SWB32. The measure includes four scales: Relationships with Others, Relationship with Self, Relationship with Someone or Something Greater, and Existential, plus a Global‐SWB item. This paper reports on further research investigating relationships between sex, age and SWB for patients receiving palliative care for cancer—adjusting for other socio‐demographic, clinical and function variables, including WHO performance status and EORTC QLQ‐C15‐PAL emotional and physical function scores.
Methods
Cross‐sectional data from the validation study were used, and chi‐square, independent t tests, Mann–Whitney U tests and multiple regression analyses applied.
Results
The study included 451 participants with advanced and incurable cancer, from 14 countries. Adjusted analyses found better scores for female participants than males on three of the four EORTC QLQ‐SWB32 subscales; Relationship with others, Relationship with Someone or Something Greater and Existential plus Global‐SWB. Older age was positively associated with better Relationship with Self.
Conclusion
The findings from our participants suggest that it might be beneficial if healthcare providers seeking to address patients’ spiritual needs pay particular attention to male patients, younger patients and those with poor emotional functioning.
BackgroundIt is widely recognized that spiritual care plays an important role in physical and psychosocial well-being of cancer patients, but there is little evidence based research on the effects of spiritual care. We will conduct a randomized controlled trial on spiritual care using a brief structured interview scheme supported by an e-application. The aim is to examine whether an assisted reflection on life events and ultimate life goals can improve quality of life of cancer patients.Methods/DesignBased on the findings of our previous research, we have developed a brief interview model that allows spiritual counsellors to explore, explicate and discuss life events and ultimate life goals with cancer patients. To support the interview, we created an e-application for a PC or tablet. To examine whether this assisted reflection improves quality of life we will conduct a randomized trial. Patients with advanced cancer not amenable to curative treatment options will be randomized to either the intervention or the control group. The intervention group will have two consultations with a spiritual counsellor using the interview scheme supported by the e-application. The control group will receive care as usual. At baseline and one and three months after randomization all patients fill out questionnaires regarding quality of life, spiritual wellbeing, empowerment, satisfaction with life, anxiety and depression and health care consumption.DiscussionHaving insight into one’s ultimate life goals may help integrating a life event such as cancer into one’s life story. This is the first randomized controlled trial to evaluate the role of an assisted structured reflection on ultimate life goals to improve patients’ quality of life and spiritual well being. The intervention is brief and based on concepts and skills that spiritual counsellors are familiar with, it can be easily implemented in routine patient care and incorporated in guidelines on spiritual care.Trial registrationThe study is registered at ClinicalTrials.gov: NCT01830075
In this article, we aimed to set out current problems that hinder a fully fledged integration of spiritual and medical care, which address these obstacles. We discuss the following five statements: 1) spiritual care requires a clear and inclusive definition of spirituality; 2) empirical evidence for spiritual care interventions should be improved; 3) understanding patients' experiences of contingency is paramount to deliver effective spiritual care; 4) attention to spiritual needs of patients is a task for every health care practitioner; 5) courses on spirituality and spiritual care should be mandatory in the medical curriculum. Current problems might be overcome by speaking each other's language, which is crucial in interdisciplinary research and in good interdisciplinary collaboration. Using a clear and inclusive definition of spirituality and substantiating spiritual care using medical standards of evidence-based practice is a way to speak each other's language and to increase mutual understanding. Furthermore, including spirituality in the medical curriculum would raise awareness of medical practitioners for their task of attending to patients' spiritual needs and, subsequently, to better and more appropriate referral for spiritual care.
BackgroundWhen patients are facing the ends of their lives, spiritual concerns often become more important. It is argued that effective, integrated palliative care should include addressing patients’ spiritual wellbeing. In 2002 the EORTC Quality of Life Group began an international study to develop an spiritual wellbeing measure for palliative patients (SWB). Spiritual wellbeing is a complex construct, which comprises multiple contributory components. While conducting the EORTC SWB validation study with Dutch palliative cancer patients we also conducted an exploratory side study to examine the relationship between their spiritual wellbeing, images of God, and attitudes towards death.MethodsPatients with incurable cancer who were able to understand Dutch and were well enough to participate, completed the provisional SWB measure and two scales assessing “Images of God” and “attitudes towards death and afterlife”. Linear stepwise regression analysis was conducted to assess the relation between SWB and other factors.ResultsFifty two Dutch patients, 28 females and 24 males, participated. The whole SWB measure validation identified four scoring scales: Existential (EX), Relationship with Self (RS), Relationships with Others (RO), Relationship with Something Greater (RSG) and Relationship with God (RG, for believers only). Adherence to an image of an Unknowable God and a worse WHO performance status were negatively associated with the EX scale. The image of an Unknowable God was also found to be negatively associated with the RS scale. Higher education correlated positively with the RO scale. Adherence to a Personal or Non-Personal Image of God was not found to be positively influencing any of the domains of SWB.ConclusionsFor our participants, an Unknowable Image of God had a negative relationship with their SWB. Furthermore, specific images of God (Personal or Non Personal) are not associated with domains of SWB. Together, these findings suggest that spiritual wellbeing surpasses traditional religious views. The development of a new language which more naturally expresses different images of a higher being amongst patients in western late-modern societies may further aid our understanding and subsequently lead to an improvement in patients’ spiritual wellbeing.
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