Contextual determinants of guideline-based family support during end-of-life cancer care and subsequent bereavement care: A cross-sectional survey of registered nurses.

PURPOSE: In end-of-life cancer care, 10-20% of bereaved family members experience adverse mental health effects, including prolonged grief disorder. Despite great efforts, evidence-based recommendations to support their grieving process and well-being are often not successfully adopted into routine clinical care. This study identified facilitators and barriers using implementation science methodology. METHODS: 81 registered nurses working in cancer care from four hospitals and three home care services in Switzerland assessed their current family support practices in end-of-life care and bereavement care. They then assessed organisational attributes of their institution and their own individual characteristics and skills regarding literature-based factors of potential relevance. Facilitators and barriers to guideline-based family support were determined using fractional logistic regression. RESULTS: Service specialisation in palliative care, a culture that supports change, the availability of family support guidelines, billing/reimbursement of bereavement support services, and individual knowledge of family support and skill were systematically associated with higher adoption of guideline-based family support practices. Lack of privacy with families and insufficient training acted as significant barriers. CONCLUSIONS: While several potentially relevant factors have emerged in the literature, certain organisational and individual determinants actually empirically predict guideline-based family support according to nurses in end-of-life cancer care, with some determinants having much stronger implications than others. This provides crucial guidance for focussing quality improvement and implementation efforts through tailored strategies, especially with scarce resources. Furthermore, adoption is lower in bereavement care than in end-of-life care, suggesting a particular need for supportive organisational cultures including specific training and billing/reimbursement options.

End-of-life and bereavement support to families in cancer care: a cross-sectional survey with bereaved family members.

BACKGROUND: Losing a close other to cancer is an incisive experience that occurs after a long course of illness and intense family caregiving. Despite an evident need for family engagement and support and guidance on this, patients and family members may not receive the attention and support they need when a family unit is experiencing a disruption by death. A clear understanding of the quality of care that is currently provided and its ability to address family needs is necessary to improve end-of-life and bereavement support to families affected by cancer. The purpose of this study is to investigate the quality of support of end-of-life and bereavement care to families, their (un)met needs, grief experiences, and self-perceived health outcomes. METHODS: A multi-center, cross-sectional observational survey study with family members (n = 35) whose close other died of cancer in a health institution or their own home in German-speaking Switzerland. RESULTS: Bereaved family members were mostly satisfied with end-of-life care. Information on the grief process and services, and acknowledgment of their grief was experienced as helpful. Most coped with their grief drawing on family resources and exhibited resilience, but they reported unmet needs in relation to family togetherness and caregiving. CONCLUSION: This study with a small number of family members indicates that support provided to families across settings and illness trajectories is perceived as helpful, with specific needs related to family support. The findings suggest that improvements should focus on ensuring care that addresses the family as a unit and enables togetherness, mutual reflection, meaningful relationships, preparedness for death, resilience, and benefit-finding. PROTOCOL REGISTRATION: https://osf.io/j4kfh .

Adoption of evidence-based end-of-life and bereavement support to families in cancer care: A contextual analysis study with health professionals.

AIMS: To investigate the level of adoption of evidence-based family engagement and support during end-of-life cancer care and subsequent bereavement and its contextual facilitators and barriers from health professionals' perspectives, and to explore differences between professional groups. DESIGN: Contextual analysis using an online cross-sectional survey. METHODS: This study was conducted in four Swiss hospitals and three home care oncology and palliative care services. Non-parametric testing was used to investigate the level of adoption and differences between nurses, physicians, occupational- and physiotherapists and psychosocial professionals (chaplains, onco-psychologists and social workers). The STROBE checklist for cross-sectional studies was followed. RESULTS: The majority of the 111 participating health professionals were nurses. Adoption was statistically significantly higher during end-of-life care than bereavement, with nurses and physicians reporting higher levels than the other professional groups. Guidance on end-of-life family care was available in about half of the cases, in contrast to a quarter for bereavement care. Self-perceived knowledge, skills and attitudes were moderate to high, with nurses and physicians reporting higher levels than others, except for general skills in working with families. Organisational structures were experienced as rather supportive, with the psychosocial group appraising the organisational context as significantly less conducive to fully implementing end-of-life and bereavement care than others, particularly during the end-of-life phase. CONCLUSION: Evidence-based family engagement and support were better adopted during end-of-life care than bereavement. Overall, nurses and physicians felt better enabled to care for families compared to other professional groups. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. PROTOCOL REGISTRATION: https://osf.io/j4kfh. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation and quality improvement efforts should focus particularly on the bereavement phase and be tailored to professional groups. IMPACT: The findings show that evidence-based family engagement and support practices during end-of-life were rather well adopted in contrast to subsequent bereavement care, with nurses and physicians better enabled than other professionals to provide care. A better understanding of health professionals' contributions and roles in family care is important to build interprofessional capacity for evidence-based end-of-life and bereavement support. REPORTING METHOD: The STROBE checklist for reports of cross-sectional studies was followed (von Elm et al., 2007).

[End-of-Life Dreams and Visions]. / Traum- und Wachvisionen am Lebensende.

End-of-Life Dreams and Visions Abstract: End-of life dreams and visions (ELDVs) or so-called death bed phenomena are transcendent experiences at the end of life that can be visual, auditory and/or kinesthetic, and often include visions of (deceased) loved ones, close friends or perceptions of places, travels, bright lights, or music. ELDVs typically occur weeks to hours prior to death and may comfort the dying and prepare spiritually for the end of life. Such experiences are frequently reported by dying individuals, the prevalence varying between 30 and 80%, but in the clinical context ELDVs are usually neglected, but interpreted and treated as pathological changes in the brain that result in, and from, delirium. This article tries to enlighten the occurrence, the contents and meanings of ELDVs in dying persons as opposed to delirium and night dreams using findings from the literature and from clinical observations. Implications of these conclusions for palliative care and the therapeutic relevance of ELDVs when taking care of dying individuals and their loved ones will also be discussed.

Do Chronic Pain Patients Wish Spiritual Aspects to Be Integrated in Their Medical Treatment? A Cross-Sectional Study of Multiple Facilities.

Background: Chronic pain is a complex, multidimensional experience. Spirituality is hypothesized to impact pain experience in various ways. Nevertheless, the role that spirituality plays in multimodal pain therapy remains controversial and, to date, quantitative data on whether and for which patients spiritual aspects should be considered in the treatment of chronic pain is lacking. The aim of this study was thus to investigate the proportion and characteristics of patients with chronic pain who wish spiritual aspects to be integrated in their treatment. Methods: Two hundred nine patients with chronic pain were recruited from five inpatient departments and outpatient clinics in the German-speaking part of Switzerland. Patients filled out validated questionnaires, such as the Hospital Anxiety and Depression Scale (HADS), the Resilience Scale (RS-11), the Spiritual and Religious Attitudes in Dealing with Illness (SpREUK), and the 12-item Spiritual Well-Being Scale (FACIT-Sp-12). Results: More than 60% (CI95%: 55.5-67.9%) of the patients wanted to address spiritual aspects in their treatment. These patients were significantly younger, had higher levels of education, and suffered from more frequent and more severe pain than patients who did not wish to address spiritual aspects. Furthermore, there were high correlations with existing spiritual resources and higher scores of spirituality. Conclusions: These results confirm that the majority of chronic pain patients wish spiritual aspects to be considered in their treatment. Additionally, the finding that these patients had more spiritual resources underlines the importance of integrating spiritual aspects in a resource-oriented, patient-centered care approach for this condition.

Comparing perspectives: patients' and health care professionals' views on spiritual concerns and needs in chronic pain care - a qualitative study.

BACKGROUND: The spiritual aspect of care is an often neglected resource in pain therapies. The aim of this study is to identify commonalities and differences in chronic pain patients' (CPP) and health care professionals' (HCP) perceptions on the integration of spiritual care into multimodal pain therapy. METHODS: We conducted a qualitative exploratory study with 42 CPPs and 34 HCPs who were interviewed in 12 separate groups in five study centres specialising in chronic pain within German-speaking Switzerland. The interviews were transcribed and subjected to a qualitative content analysis. Findings were generated by juxtaposing and analysing the statements of (a) HCP about HCP, (b) HCP about CPP, (c) CPP about HCP, and (d) CPP about CPP. RESULTS: Views on spiritual concerns and needs in chronic pain care can be described in three distinct dimensions: function (evaluating the need / request to discuss spiritual issues), structure (evaluating when / how to discuss spiritual issues) and context (evaluating why / under which circumstances to discuss spiritual issues). CPPs stress the importance of HCPs recognizing their overall human integrity, including the spiritual dimension, and would like to grant spiritual concerns greater significance in their therapy. HCPs express difficulties in addressing and discussing spiritual concerns and needs with chronic pain patients. Both parties want clarification of the context in which the spiritual dimension could be integrated into treatment. They see a need for greater awareness and training of HCPs in how the spiritual dimension in therapeutic interactions might be addressed. CONCLUSIONS: Although there are similarities in the perspectives of HCPs and CPPs regarding spiritual concerns and needs in chronic pain care, there are relevant differences between the two groups. This might contribute to the neglect of the spiritual dimension in the treatment of chronic pain. TRIAL REGISTRATION: This study was part of a larger research project, registered in a primary (clinicaltrial.gov: NCT03679871 ) and local (kofam.ch: SNCTP000003086 ) clinical trial registry.

Religion and the World Health Organization: an evolving relationship.

Much has been written about WHO. Relatively little is known, however, about the organisation's evolving relationship with health-related personal beliefs, 'faith-based organisations' (FBOs), religious leaders and religious communities ('religious actors'). This article presents findings from a 4-year research project on the 'spiritual dimension' of health and WHO conducted at the University of Zürich. Drawing on archival research in Geneva and interviews with current and former WHO staff, consultants and programme partners, we identify three stages in this relationship. Although since its founding individuals within WHO occasionally engaged with religious actors, it was not until the 1970s, when the primary healthcare strategy was developed in consultation with the Christian Medical Commission, that their concerns began to influence WHO policies. By the early 1990s, the failure to roll out primary healthcare globally was accompanied by a loss of interest in religion within WHO. With the spread of HIV/AIDS however, health-related religious beliefs were increasingly recognised in the development of a major quality of life instrument by the Division of Mental Health, and the work of a WHO expert committee on cancer pain relief and the subsequent establishment of palliative care. While the 1990s saw a cooling off of activities, in the years since, the HIV/AIDS, Ebola and COVID-19 crises have periodically brought religious actors to the attention of the organisation. This study focusses on what we suggest may be understood as a trend towards a closer association between the activities of WHO and religious actors, which has occurred in fits and starts and is marked by attempts at institutional translation and periods of forgetting and remembering.

Including the Spiritual Dimension in Multimodal Pain Therapy. Development and Validation of the Spiritual Distress and Resources Questionnaire (SDRQ).

CONTEXT: Valid instruments for assessing spiritual resources and distress in pain therapy are scarce. The Spiritual Distress and Resources Questionnaire (SDRQ) was developed to fill this gap. GOALS: The objective of this study was to investigate the SDRQ's psychometric properties. METHODS: We presented the SDRQ to 219 patients with chronic pain conditions and examined its measurement properties, namely reliability and structural, convergent and discriminant validity. To investigate test-retest reliability, the SDRQ was presented a second time to a subsample of 58 randomly selected participants. RESULTS: Factor analysis required a grouping of the 22 SDRQ items into four subscales: spiritual distress, spiritual coping, immanence and transcendence, the latter two representing spiritual resources. Cronbach's alpha was high for spiritual distress (0.93), transcendence (0.85), and immanence (0.81) while it was somewhat lower but still satisfactory for spiritual coping (0.70). The construct validity of the SDRQ was shown by correlations with established measures in the field. Higher levels of spiritual distress were associated with signs of more severe illness, such as emotional distress and pain intensity. CONCLUSION: The results from this study suggest that the SDRQ is an easy-to-use, reliable and valid screening instrument for assessing spiritual distress, spiritual resources and spiritual coping in patients with chronic pain. The SDRQ has the potential to be used with patients suffering from other chronic diseases and to disseminate the palliative approach to pain treatment to other areas of medicine.

[Spirituality and health care. The perspective of patients with chronic pain]. / Spiritualität und Behandlung. Die Perspektive von Patienten mit chronischen Schmerzen.

BACKGROUND: Chronic pain affects all aspects of human life, which raises spiritual questions that should be included within the framework of multimodal care. OBJECTIVES: We investigated the perspective of patients with chronic pain around spiritual concerns and their potential integration into care. MATERIALS AND METHODS: We conducted five focus group interviews and two small group interviews. In total, 42 patients with chronic pain in outpatient or inpatient pain care at the time of the study participated. The interviews were transcribed and thematically analyzed. RESULTS: Three themes emerged: (1) Chronic pain permeates the entity of a person's existence. (2) Spiritual resources are potentially supportive in living with chronic pain. (3) Patients appreciate the opportunity to engage with health care professionals in a dialog that encompasses spiritual concerns. For participants, these concerns have considerable relevance. In many cases participants associated them with religious convictions, but not exclusively. They often related feeling that their pain experience was dismissed. CONCLUSION: Finding strategies for effectively dealing with chronic pain represents a turning point in life. Open discussion with health care professionals that allow for spiritual issues facilitates this process.

Feasibility, Acceptability, and Preliminary Efficacy of Dignity Therapy in Patients With Early Stage Dementia and Their Family. A Pilot Randomized Controlled Trial.

Purpose: Dementia is the major cause for disability and dependence in older people and associated with considerable psychological burden. The aim of this study was to determine the feasibility, acceptability and preliminary efficacy of Dignity Therapy, a brief psychotherapeutic intervention to enhance dignity and reduce psychological burden, in patients with early stage dementia and in their families or close friends. Materials and methods: In this randomized, waitinglist-controlled clinical trial a total of 54 patients with new diagnosis of early stage dementia and 54 study partners (spouses: n = 37; relatives: n = 14; close friends: n = 3) were randomly assigned to immediate treatment (n = 28) or delayed treatment (n = 26) after 3 months waiting. The main outcomes were feasibility: proportion of screened and invited patients who consented participation; Acceptability: number of drop-outs, and satisfaction with treatment; Efficacy: psychological burden (Hospital Anxiety and Depression Scale-HADS), quality of life (WHOQOL-Bref), and sense of dignity (Patient Dignity Inventory-PDI). Results: In total 38.6% of all eligible patients (n = 140) consented and were enrolled. Along the study six participants (11.1%) dropped out. Patients' satisfaction with the treatment was high and with no significant difference between the groups. HADS scores were significantly lower in both groups at the 3-months follow-up (immediate group: mean difference = -2.69, SE = 0.85, P = 0.003; delayed group: mean difference = -1.97, SE = 0.89, P = 0.031). There was no significant group by time interaction effect (F = 0.71; df = 2, 70.3; P = 0.50). PDI scores only decreased significantly (i.e., improvement of dignity) in the immediate group (mean difference = -6.56, SE = 1.63, P < 0.001; delayed group: mean difference = -3.01, SE = 1.69, P = 0.081), but the group by time interaction effect was not statistically significant (F = 2.29; df = 1, 46.8; P = 0.14). Quality of life improved in some respects by the treatment, but the immediate and the delayed group did not differ significantly over time. After pooling patients' data of both groups, Dignity Therapy resulted in significant improvements in almost all outcome measures. Patients' family members/close friends reported high satisfaction with the intervention. Conclusions: Our findings suggest that Dignity Therapy is feasible and highly accepted in patients with early stage dementia. Patients reported significant improvements, however, there was no significant effect of the intervention in the immediate treatment group compared to the delayed group.

Hospital-based bereavement care provision: A cross-sectional survey with health professionals.

BACKGROUND: An in-hospital death is a profound experience for those left behind and has been associated with family members' psychological morbidity. Supporting bereaved family members is an essential part of end-of-life care and includes attentive presence, information-giving, and emotional and practical support. The actual adoption of hospital-based bereavement care, however, remains little understood. AIM: To investigate hospital-based bereavement care provision and associated barriers. DESIGN: Cross-sectional survey using an online questionnaire. SETTING/PARTICIPANTS: Health professionals (n = 196) from two University-affiliated acute and psychiatric hospitals in Switzerland. RESULTS: The most frequent bereavement services (⩾40%) were viewing the deceased, giving information on available support, and making referrals; the most often named barriers were lack of time and organizational support. Acute care health professionals faced statistically significant more structural barriers (55.1% vs 21.4% lack of time, 47.8% vs 25.9% lack of organizational support) and felt insufficiently trained (38.4% vs 20.7%) compared to mental health professionals (p ⩽ 0.05). Nurses provided more immediate services compared to physicians, such as viewing the deceased (71.3% vs 49.0%) and sending sympathy cards (37.4% vs 16.3%) (p ⩽ 0.01). In contrast, physicians screened more often for complex bereavement disorders (10.2% vs 2.6%) and appraised bereavement care as beyond their role (26.5% vs 7.8%) (p ⩽ 0.05). CONCLUSION: The study indicates that many barriers to bereavement care exist in hospitals. More research is required to better understand enabling and limiting factors to bereavement care provision. A guideline-driven approach to hospital-based bereavement care that defines best practice and required organizational support seems necessary to ensure needs-based bereavement care.