Associations between sex, age and spiritual well-being scores on the EORTC QLQ-SWB32 for patients receiving palliative care for cancer: A further analysis of data from an international validation study.

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.

Images of God and attitudes towards death in relation to spiritual wellbeing: an exploratory side study of the EORTC QLQ-SWB32 validation study in palliative cancer patients.

BACKGROUND: When 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. METHODS: Patients 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. RESULTS: Fifty 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. CONCLUSIONS: For 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.

Modes of relating to contingency: An exploration of experiences in advanced cancer patients.

OBJECTIVE: Throughout their lives, people are confronted with unexpected life events, which can be difficult to incorporate into their life narratives. Such a confrontation can result in an experience of contingency. Different ways of relating to contingency have been described by Wuchterl: denying, acknowledging, and "encounter with the Other." In the present article, we aim to trace these theoretical distinctions in real-life experiences of patients. METHOD: We analyzed 45 interviews using the constant comparative method with a directed content analysis approach in the Atlas.ti coding program. The interviews originated from a randomized controlled trial evaluating an assisted reflection on life events and ultimate life goals. Seven spiritual counselors from six hospitals in the Netherlands conducted the interviews from July of 2014 to March of 2016. All 45 patients had advanced cancer. RESULTS: We found four different modes into which relating to contingency can be classified: denying, acknowledging, accepting, and receiving. With denying, patients did not mention any impact of the life event on their lives. In acknowledging, the impact was recognized and a start was made to incorporate the event into their life. In accepting, patients went through a process of reinterpretation of the event. In receiving, patients talked about receiving insights from their illness and living a more conscious life. SIGNIFICANCE OF RESULTS: 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.

The effect of spiritual interventions addressing existential themes using a narrative approach on quality of life of cancer patients: a systematic review and meta-analysis.

OBJECTIVE: The aim of this study was to examine the effect of spiritual interventions on quality of life of cancer patients. METHODS: We conducted our search on June 6, 2014 in Medline, PsycINFO, Embase, and PubMed. All clinical trials were included that compared standard care with a spiritual intervention that addressed existential themes using a narrative approach. Study quality was evaluated by the Cochrane Risk of Bias Tool. RESULTS: A total of 4972 studies were identified, of which 14 clinical trials (2050 patients) met the inclusion criteria, and 12 trials (1878 patients) were included in the meta-analysis. The overall risk of bias was high. When combined, all studies showed a moderate effect (d) 0.50 (95% CI = 0.20-0.79) 0-2 weeks after the intervention on overall quality of life in favor of the spiritual interventions. Meta-analysis at 3-6 months after the intervention showed a small insignificant effect (0.14, 95% CI = -0.08 to 0.35). Subgroup analysis including only the western studies showed a small effect of 0.17 (95% CI = 0.05-0.29). Including only studies that met the allocation concealment criteria showed an insignificant effect of 0.14 (95% CI = -0.05 to 0.33). CONCLUSIONS: 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.

The life in sight application study (LISA): design of a randomized controlled trial to assess the role of an assisted structured reflection on life events and ultimate life goals to improve quality of life of cancer patients.

BACKGROUND: It 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/DESIGN: Based 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. DISCUSSION: Having 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 REGISTRATION: The study is registered at ClinicalTrials.gov: NCT01830075.

The future of chaplaincy in a secularized society: a mixed-methods survey from the Netherlands.

The spiritual care profession in the Netherlands is going through significant changes, including an increasing demand for secular and multi-faith spiritual care, a move towards professionalization and formulating 'best practices', as well as a broadening of the scope of chaplains' activities.In October 2019, 405 Dutch healthcare chaplains completed an online mixed methods survey with open and closed-ended questions about their work situation and professional identity. Quantitative analyses showed that most respondents evaluated current developments in chaplaincy in a positive way. Qualitative findings showed trends towards interconfessional and secular spiritual care, outpatient spiritual care and the emergence of evidence-based chaplaincy. Participants who responded most negatively to those developments criticized evidence-based approaches for measuring the effects of chaplaincy, unstable financing structures, and the encroachment of other professions upon the domain of spiritual care.

The professionalization of chaplaincy A Comparison of 1997 and 2017 Surveys in The Netherlands.

Chaplaincy has become increasingly professionalized in response to both the standardization in healthcare and the changing religious landscape. Whereas several studies have paid attention to the professionalization of chaplaincy as a whole, no research has been found that describes the implications for individual chaplains. The present article describes the professionalization of Dutch chaplains in the last two decades. We compared the results of two surveys conducted with chaplains in the Netherlands in 1997 and 2017. We describe professionalization by distinguishing between the changed values, expertise, and positioning of chaplains. We found that chaplains' expertise has been developed by a growing but highly diverse body of knowledge. Furthermore, a pluralization of chaplains' worldviews was observed, including non-religious and non-affiliated positions. Lastly, no major changes were observed in the embedding of chaplains.

Enhancing the integration of chaplains within the healthcare team A qualitative analysis of a survey study among healthcare chaplains.

Background: Spiritual well-being is considered an important component of health and is increasingly integrated at all levels of healthcare. Delivering good integrated spiritual care requires coordination between different colleagues in which interprofessional collaboration is crucial. However, this interprofessional collaboration is not always self-evident. What spiritual care entails, is often poorly understood by their healthcare colleagues. Developing a shared professional identity is a crucial component of the shift towards professionalisation in chaplaincy. Objectives: We aim to answer the following research question: how do healthcare chaplains in the Netherlands describe their work and their professional identity in relation to other healthcare professionals? Design and subjects: Analysis of open-ended questions of a survey among healthcare chaplains regarding professional self-understanding in the Netherlands. Results: 107 Dutch chaplains working in a healthcare setting completed the five open-ended questions in the survey. The field of healthcare chaplaincy is changing from an exclusive focus at patients, towards more activities at staff and organisational level such as educating other healthcare professionals and, being involved in ethics and policy making. Conclusions: Our research shows that the professional self-understanding of chaplains entails many leads to foster interprofessional collaboration. At the same time, there are concerns about the professional identity of the chaplain which is not always clear to every healthcare professional. Healthcare teams can benefit from an extensive integration of chaplains in the healthcare team, by including the non-patient-related activities of chaplains, such as staff training, moral deliberation and policy advice.

A spiritual care intervention for chaplains in home-based palliative care: design of a mixed-methods study investigating effects on patients' spiritual wellbeing.

Recently, the call for chaplains to become 'research literate' has been recognized by various scholars as well as by practitioners in the field. However, papers that present and discuss the study design and provide guidance on the methodology of chaplaincy research are scarce. The aim of this study is to present the design of a mixed-methods study that investigates the impact of a spiritual care intervention on patients' spiritual wellbeing in palliative, home-based care. It reports on the steps needed to conduct such a study in chaplaincy care, and describes and discusses the study's research design, intervention, participants, sampling strategy, patient and public involvement, procedure, ethical considerations, data collection, and analysis. Presenting and discussing such a design is not only useful for researchers before conducting their study, in order to create transparency, but also for chaplains to improve their knowledge on research methodology and research literacy.

Narrative meaning making and integration: Toward a better understanding of the way falling ill influences quality of life.

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.

Relating to the Experience of Contingency in Patients With Advanced Cancer: An Interview Study in U.S. Patients.

CONTEXT: Being diagnosed with incurable cancer can be a life-changing experience, evoking different spiritual questions and needs. Confronting a serious life-threatening event occurs not only often unexpected but also can disrupt a person's self-image and ideals of their personhood. This confrontation makes it difficult for people to integrate it into their personal life story-otherwise referred to as an experience of contingency. OBJECTIVES: Different modes of relating to the contingent life event of having cancer have been studied in a Dutch patient population. Here we present an interview study in an U.S. population with advanced cancer patients. METHODS: We included eight American patients with advanced cancer from the George Washington University Cancer Center. All patients were interviewed twice discussing their life events and life goals using a semistructured interview model. All interviews were transcribed and analyzed focusing on how patients described the way they related to the experience of having advanced cancer. The constant comparative method with a directed content analysis approach was used to code the themes in the interviews. RESULTS: The analyses show that the four modes of relating to contingency that we found in the Dutch study population can also be found in an American advanced cancer patient population. Differences were found in the extended way American patients described the fourth mode of "receiving." CONCLUSION: This study ensures a broader and deeper understanding of relating to the experience of contingency in having incurable cancer, which is crucial in developing accurate spiritual care in the palliative phase of patients.

Toward a Fully Fledged Integration of Spiritual Care and Medical Care.

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.

Improving communication on hope in palliative care. A qualitative study of palliative care professionals' metaphors of hope: grip, source, tune, and vision.

CONTEXT: Hope is important in palliative care. However, palliative care professionals' perspectives on hope are not well understood. Metaphors of hope are a way of better understanding these perspectives. OBJECTIVES: To describe palliative care professionals' perspectives on hope by examining the hope metaphors they spontaneously used to describe their own hope and their perspectives on the hope of patients and their families. METHODS: Semistructured interviews with palliative care professionals were recorded, transcribed, and analyzed using a narrative approach. Results were discussed until the researchers reached consensus and reinforced by other health-care professionals and by observing several palliative care settings. RESULTS: The 64 participants (mean (SD) age, 48.42 (9.27) years and 72% female) were physicians (41%), nurses (34%), chaplains (20%), or other professionals (5%), working in Canada (19%) or The Netherlands (81%). Participants described the hope of patients, their families, or themselves as a 1) grip, which implied safety; 2) source, which implied strength; 3) tune, which implied harmony; and 4) vision, which implied a positive perspective. Compared with Dutch participants, Canadian participants generally put more emphasis on spirituality and letting go of their own hope as a grip (safety). Compared with other included professionals, physicians used hope as a grip (safety) most often, whereas chaplains used hope as a tune (harmony) most often. CONCLUSION: Our findings help to increase the understanding of hope and contribute to improving communication skills in palliative care professionals.