Spiritual Distress Research Articles

Positive Psychological Factors Are Associated With Better Spiritual Well-Being and Lower Distress in Individuals With Skin Diseases.

In this study we examined whether aspects of positive functioning [reappraisal, sense of coherence (SOC), and positivity] were associated with spiritual well-being and psychological distress after controlling for negative functioning (skin-related symptoms, type of disease, and expressive suppression) in individuals with skin diseases. We also examined whether negative functioning aspects were linked to spiritual well-being and distress when controlling for aspects of positive functioning. The study used a cross-sectional design with a sample of 192 individuals with psoriasis and systemic sclerosis (SSc) (Mage = 51.6 years, SD = 16.5). Two hierarchical multiple regressions were conducted to determine whether spiritual well-being and psychological distress were accounted for by skin-related symptoms, type of disease, emotion regulation strategies, SOC, and positivity. Positivity was the most important contributor to better spiritual well-being, followed by both the comprehensibility/manageability and meaningfulness SOC subscales, after controlling for the other variables. High skin-related symptoms and expressive suppression were associated with lower psychological distress, whereas high SOC and reappraisal correlated with higher psychological distress. The findings of this study pave the way for further research on how SOC and positivity may reduce the effects of both skin-related symptoms and emotion dysregulation and facilitate spiritual well-being of individuals with skin diseases. Interventions aimed to enhance inner resources of these individuals and help them to find a meaning in their experience of skin disease might reduce psychological distress and improve spiritual well-being. Our findings suggest that healthcare professionals should consider positive functioning aspects in future interventions for individuals with skin diseases.

Methodological and ethical challenges while conducting qualitative research on spirituality and end of life in a Muslim context: a guide to novice researchers.

Abstract Spirituality could be understood as a personal belief, a relation with sacred, divine experience, a sense of purpose and meaning towards life, authenticity and connectedness. It is a continually evolving, highly complex, contextual, subjective, and sensitive construct. A continuous development is seen around understanding about spirituality and spiritual concepts, such as spiritual experiences, spiritual pain and spiritual distress, especially among patients and families at the end of life. The concepts, values, attitudes, and beliefs around spirituality, spiritual needs and expressions vary among different individuals, cultures, and religions. There is a dearth of literature around spirituality, especially among Muslim patients and families at the end of life. The complexities around the concept of spirituality in the literature raise several ethical and methodological concerns for a novice researcher while planning and conducting a study on spirituality during end-of-life care in a hospice setting, especially among a Muslim population. This paper aims to share some of the methodological and ethical challenges that can be faced by qualitative researchers while conducting research around spirituality and end-of-life care in an Islamic/Muslim context. Major challenges include defining the term spirituality, spirituality and culture, communication, power relations, language and translation, recruitment and selection of the participants, emotional distress, and reflexivity and reciprocity. Having an in-depth understanding of these challenges can guide researchers to address these issues adequately in their spirituality research in a Muslim context.

Abstract PO-011: CiRCL: A psychosocial program facilitating communication and care to patients, families, and frontline health care teams during COVID-19

Abstract The need for strict social distancing measures preventing visitors on inpatient oncology, ICU, and COVID units during the COVID-19 pandemic has had the unintended consequence of leading to significant psychological and spiritual distress for patients and families and “moral distress” for frontline health care teams tasked with supporting patients who are suffering or dying alone without the support of their loved ones. The trauma of these deaths is sometimes further compounded for families by their inability to provide the final rituals of patients’ faith communities in their last moments, leading to complicated and ongoing grief after the loss. To address these complex psychosocial needs among COVID-19 and advanced cancer oncology patients, and the health care teams caring for them, the Simms/Mann UCLA Center for Integrative Oncology, in collaboration with colleagues at the UCLA Anderson School of Business and a team of diverse faith leaders, developed an innovative digitally mediated program for connection, communication, and care. This program, CiRCL (Caring in Remote Communities of Love), leveraged ZOOM and smartphone recording technology to accomplish the following goals: 1) provide psychological support to family members and friends to facilitate the recording of meaningful personal messages to the patient, including curated playlists of evocative songs from the patient’s life to be played at the bedside; 2) facilitate more meaningful communication between loved ones and frontline workers, including messages of gratitude and support to reduce feelings of isolation and moral distress for frontline workers; and 3) create a liturgical library of recorded ecumenical and faith-based blessings from various traditions, available during illness and at time of dying. Blessings include and encompass the health care teams as well as patients. This program, recently developed and being piloted at UCLA, is intended to extend compassion to all within the health care system during the unique challenges of COVID-19 and, by facilitating connection and support among patients, families, and frontline teams, extend the definition of healing and mitigate the impact of loss and grief for all during the many phases of this pandemic. Citation Format: Kauser Ahmed, Peter Phung, Noah Goldstein, John Glaspy. CiRCL: A psychosocial program facilitating communication and care to patients, families, and frontline health care teams during COVID-19 [abstract]. In: Proceedings of the AACR Virtual Meeting: COVID-19 and Cancer; 2020 Jul 20-22. Philadelphia (PA): AACR; Clin Cancer Res 2020;26(18_Suppl):Abstract nr PO-011.

POLST Signature Requirements: Responding With Compassion While Ensuring Informed Consent.

The majority of states require the signature of a surrogate decision maker on a POLST form for a patient who lacks decisional capacity. While commendable in its intention to ensure informed consent, in some cases this may lead the surrogate to feel that they are signing their loved one’s “death warrant,” adding to their emotional and spiritual distress. In this paper we argue that such a signature should be recommended rather than required, as it is neither a sufficient nor necessary condition of informed consent. Additional steps—such as requiring the attestation and documentation of the signing health care professional that verbal consent was fully informed and voluntary—can achieve the ultimate goal of respecting patient autonomy without adding to the surrogate’s burden.

Spiritual care experiences by cancer patients, their family caregivers and healthcare team members in oncology practice settings: A qualitative study

PurposeIntegrating spirituality into the patient care within a healthcare team, increases the ability to provide “holistic care” for cancer patients. The spiritual care experiences of different involved persons can be a guide for future planning. Therefore, this study aimed to explore the spiritual care experiences of hospitalized cancer patients, their family caregivers and healthcare team members in oncology settings. MethodsThis is a descriptive qualitative study which was conducted with 21 participants, who were selected by purposive sampling. Semi-structured interviews were used to collect the data. The data were analyzed with conventional content analysis method. ResultsTwo themes of "systematic care" and "caring with paradoxical results" were extracted from the spiritual care experiences of our participants. ConclusionsSpiritual care as professional, comprehensive, collaborative and artistic care should be provided in a multidisciplinary healthcare team for cancer patients. Otherwise, patients may experience deprivation of spiritual services and consequently, spiritual distress.

WITHDRAWN: Vicarious spiritual distress in intensive care unit healthcare providers: A qualitative study

This article has been withdrawn at the request of the author(s) and/or editor. The Publisher apologizes for any inconvenience this may cause. The full Elsevier Policy on Article Withdrawal can be found at https://www.elsevier.com/about/our-business/policies/article-withdrawal.

The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms

IntroductionApproximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. MethodsSecondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. ResultsOf 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. ConclusionFindings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.

Moral agency and spirituality in palliative care.

Moral agency is a prerequisite for a full autonomous decision, meaning that the agents have the intrinsic capacity to understand their actions and to be accountable for the consequences of these actions. Palliative care patients have the moral right to build their capacity to decide, so that they are truly empowered to make choices. However, moral and spiritual distress are common at the end-of-life, which may arise if there is a threat to the individual's integrity and disruption of one's belief system, consequently leading to the deterioration of the patient's moral agency. The aim of this paper is to determine if spirituality may be an important tool for the empowerment of palliative care patients and if moral agency can be enhanced by a diligent spiritual advocate. Spiritual awareness, self-knowledge, and specific training are key elements for the spiritual advocate to address patients' spiritual needs and distress in a neutral and non-directive way, to promote autonomy, well-being, and quality of life. Thus, patients' dignity and right for self-determination are respected, thereby supporting empowerment, reducing suffering, respecting patients' individuality, and engaging moral agency. Palliative care patients should be able to fully exercise their autonomy. This strategy might be very appealing for adequate advance care planning, whatever the choices of the patient, as well as to prevent distress, hopelessness, and the lack of meaning that many terminal patients experience.

Perceptions and practices of spiritual care among hospice physicians and nurses in a Taiwanese tertiary hospital: a qualitative study

BackgroundSpiritual care is frequently cited as a key component of hospice care in Taiwanese healthcare and beyond. The aim of this research is to gauge physicians and nurses’ self-reported perspectives and clinical practices on the roles of their professions in addressing spiritual care in an inpatient palliative care unit in a tertiary hospital with Buddhist origins.MethodsWe performed semi-structured interviews with physicians and nurses working in hospice care over a year on their self-reported experiences in inpatient spiritual care. We utilized a directed approach to qualitative content analysis to identify themes emerging from interviews.ResultsMost participants identified as neither spiritual nor religious. Themes in defining spiritual care, spiritual distress, and spiritual care challenges included understanding patient values and beliefs, fear of the afterlife and repercussions of poor family relationships, difficulties in communication, the patient’s medical state, and a perceived lack of preparedness and time to deliver spiritual care.ConclusionsOur study suggests that Taiwanese physicians and nurses overall find spiritual care difficult to define in practice and base perceptions and practices of spiritual care largely on patient’s emotional and physical needs. Spiritual care is also burdened logistically by difficulties in navigating family and cultural dynamics, such as speaking openly about death. More research on spiritual care in Taiwan is needed to define the appropriate training, practice, and associated challenges in provision of spiritual care.

Palliative care: A “missing chapter” in medical science


 
 
 Palliative care is a method which provides special care to patients and families facing progressive and fatal diseases. This care emphasizes on giving relief from psychological problems, spiritual distress and physical symptoms. Understanding and learning of applying principles of palliative medicine are important in the field of palliative care. This review provides an idea about the status of palliative care, hospice care and integration of palliative care in the Indian curriculum of medical science. Many studies suggest that palliative care is appropriate in the care of chronic illness. But research and educational progress of palliative care are still scarce in present day technology based knowledge of medical biology. Our aim in this review is to focus the light on the dearth of knowledge for integrative palliative care needed for the medical professional of chronic diseases, researchers and others related to palliative care.
 
 

Cultural thanatology: an exploration of the religious, spiritual, and existential concerns of elderly terminally-ill diasporic Hindus

ABSTRACT Thanatology is defined as the interdisciplinary study of death and dying. Religious beliefs, cultural patterns and insights into the spirit or the non-material aspects of our being form a component of thanatological studies and may be designated as ‘cultural thanatology’. This ethnographic study explores the religious, spiritual and existential concerns of a group of elderly, terminally-ill South African Hindus. Using grounded theory, the in-depth interviews, which provided a rich tapestry of participants’ religious and spiritual values and beliefs in the quest to find meaning in the midst of ‘end-of-life’ despair, were thematically analysed. Participants expressed both spiritual relief and spiritual pain based on their individual cultural constructs of religious beliefs and customs. We found that poorly interpreted or dysfunctional aspects of religious belief contributed to psychological disturbances, and that a frustrated existential quest for meaning manifested itself as spiritual distress. However, although they reflected varying levels of pain and suffering, mentally and physically, coping and acceptance were also prevalent among all the participants of this study.

On These Holy Mountains

Chaplains are charged with the essential task of reflecting on their experiences and developing their insights into formats that can be shared with others. This brief report summarizes the spiritual distress and coping of four participants in the Hear My Voice pilot study for patients with advanced diseases, and includes questions for reflection on spiritual care and further research. It emphasizes the importance of taking time to listen deeply to one’s experiences and the work of others to gain insight and perspective, contribute to the knowledge of others in writing, teaching and research, and advance best practices in spiritual care.

The need for a Serious Illness Digital Ecosystem (SIDE) to improve outcomes for patients receiving palliative and hospice care.

Palliative and hospice care services produce immense benefits for patients living with serious illness and for their families. Due to the national shift toward value-based payment models, health systems and payers share a heightened awareness of the need to incorporate palliative and hospice services into their service mix for seriously ill patient populations. During the last decade, a tremendous amount of capital has been invested to better integrate information technology into healthcare. This includes development of technologies to promote utilization of palliative and hospice services. However, no coordinated strategy exists to link such efforts together to create a cohesive strategy that transitions from identification of patients through receipt of services. A Serious Illness Digital Ecosystem (SIDE) is the intentional aggregation of disparate digital and mobile health technologies into a single system that connects all of the actors involved in serious illness patient care. A SIDE leverages deployed health technologies across disease continuums and geographic locations of care to facilitate the flow of information among patients, providers, health systems, and payers. Five pillars constitute a SIDE, and each one is critical to the success of the system. The 5 pillars of a SIDE are: Identification, Education, Engagement, Service Delivery, and Remote Monitoring. As information technology continues to evolve and becomes a part of the care delivery landscape, it is necessary to develop cohesive ecosystems that inform all parts of the serious illness patient experience and identifies patients for the right services, at the right time.

605 Integrative Nursing for Burn Patients: Necessity for Bridging Gaps in Spiritual Care

Abstract Introduction Spirituality is universal and is a major factor in the search for meaning in life. Spiritual care helps to overcome the fear of the unknown and anxiety related to distress or dying. The majority of healthcare providers do not feel competent or confident to deliver spiritual care. Currently there are gaps in spiritual care delivery, despite the availability of spiritual care services during patient’s and families’ imminent spiritual privations. Methods A written survey was conducted among the clinical nurses in the burn unit to identify the nurse’s perception regarding spiritual care. The survey was voluntary and anonymous. The survey contained six multiple choice questions and a comment section. (See Table 1) Results There was an 88% response rate (n=30) from all nurses (n=34) in the unit. While majority (90.3%) of staff felt spiritual care was an important component in the overall care, only 13.3% felt confident to provide the care. Among the survey participants, 77.4% agreed they had come across a time when they were not able to obtain spiritual care for their patient. Among the survey responders, 77.4% believed a nurse could be trained to deliver spiritual care in urgent situations to fill the gap in the absence of hospital chaplain. Finally, the nursing staff was asked if they would be interested in receiving education and 38.7% agreed they were interested in spiritual care education (Table 1). Conclusions Burn unit nurses reported spiritual care as an essential component for the holistic care of patients. However, nurses admit they lack confidence in providing spiritual care and agreed to the need for spiritual care education, with about a third of them being willing to obtain the education. As a result of this assessment, education will be provided to nurses in the burn unit as a pilot project. The overall goal is to educate the nurses throughout the facility who are interested in improving their spiritual care delivery. Applicability of Research to Practice Proper nursing education is needed to develop competency and confidence to provide spiritual care and minimize the gaps in spiritual care services during a patient’s imminent death or spiritual distress.

Challenges and Enablers of Spiritual Care for Family Members of Patients in the Intensive Care Unit.

Spiritual care has been recognized as important to family members of critically ill patients, although it is often not integrated within clinical practice. We conducted focus groups and interviews with family members, spiritual health practitioners, and clinicians who work in the intensive care unit (ICU) to explore their experiences of working with family members experiencing spiritual distress in this setting. Challenges and factors that enable identification and support for spiritual distress were identified, as well as suggestions for improvement.

Editorial introductions

Editorial introductions

Spirituality in heart failure: a review of the literature from 2014 to 2019 to identify spiritual care needs and spiritual interventions.

The burden of heart failure is significant and its management is complex. Current evidence confirms a high level of spiritual distress and a strong desire for spiritual support, which is endorsed by healthcare policy, yet spiritual support is rarely provided for this patient group. There is a need to identify how spiritual support might be meaningfully included within holistic heart failure multidisciplinary care and how its effectiveness might be demonstrated. A literature review was undertaken to identify recent evidence (2014-2019) of the spiritual care needs of heart failure patients/carers and the nature and effectiveness of spiritual interventions in heart failure care. Taken as a whole, studies exploring heart failure patients'/carers' needs reflected the broad spectrum of spirituality as defined by international consensus, however, some studies focused on only some aspects of spirituality and on advanced disease. All studies were limited. No single spiritual intervention was identified as effective in enhancing quality of life in patients with heart failure. Life review and relaxation/meditation appeared ineffective. Interventions, which included elements of 'talking' about spiritual matters, 'spiritual coping' and those involving a holistic person-centred team approach to care of which spiritual care was an aspect, are worth investigating further in well designed randomized controlled trials.

Initial Spiritual Screening and Assessment: Five Things to Remember.

To deliver holistic and person-centered palliative care (PC), the spiritual dimension must also be assessed. However, many nurses do not screen for or assess patient spirituality. This article presents five things that PC nurses can consider in order to improve their spiritual screening and assessment practices. These points are as follows: (1) Understand that spirituality is manifest in a myriad of ways and is not the same thing as religiosity. (2) Screen for spiritual distress, and then later conduct a spiritual history or assessment. (3) Remember that spirituality is not just something to assess upon admission. (4) Know that there are many ways to assess spirituality (it is not merely how a patient verbally responds to a question about spirituality or religiosity). (5) Remember that assessment can also be therapeutic.

Factors associated with spiritual care competencies in Taiwan's clinical nurses: A descriptive correlational study.

To determine factors associated with nurses' spiritual care competencies. Holistic nursing care includes biopsychosocial and spiritual care. However, nurses are limited by a lack of knowledge, time constraints and apprehension of assessing spiritual issues, which leaves them unable to assess and meet patients' spiritual needs. Thus, when patients experience spiritual distress, clinical nurses lose the opportunity to support spiritual growth and self-actualisation. In Taiwan, spiritual care, religion and culture are unique compared to those in other countries. Overall, factors associated with Taiwanese nurses' spiritual care competencies lack comprehensive exploration. This study adopted a descriptive correlational design using cross-sectional survey (see Appendix S1). Cluster sampling was used to select clinical nurses from fourteen units of a medical centre and a regional hospital. Data were collected from January-June 2018 with a 97.03% response rate. Clinical nurses completed a background questionnaire, spiritual care practice questionnaire, spirituality and spiritual care-related scales. Data were analysed using descriptive and linear regression. This report followed the STROBE checklist. Spiritual care competence ranged from 44-123 (mean 84.67±12.88; range 27-135). The majority of clinical nurses rated their spiritual care competence as moderate (64-98). The significant factors associated with nurses' spiritual care competence were education, religion, interest in spiritual care, having role models, past life events, barriers to providing spiritual care of the spiritual care practice score, and spiritual attitude and involvement score. The overall model was significant (p<.001) and accounted for 55.0% of variance (adjusted R2 =.488). Most clinical nurses have moderate spiritual care competence. Objective factors identified affect clinical nurses' spiritual care competencies. To improve nurses' spiritual care competencies, objective factors that affect clinical nurses' spiritual care competencies must be emphasised. Multiple strategies for enhancing nurses' own spiritual well-being can be provided via employee health promotion projects and activities, and promoting nurses' spirituality and spiritual care competencies can be explored in clinical settings through bedside teaching, situational simulation, objective structured clinical examinations and self-reflection.

A First Aid Kit for Supporting Children Around Death and Dying (SA525)

•Summarize adverse consequences of bereavement on child development.•Describe the epidemiology of child grief and how it constitutes a public health problem.•Identify at least three supportive techniques to implement when working with patients or families caring for grieving children. When considering the needs of hospice and palliative care patients, it is essential to care for the whole patient. In addition to medical needs, this includes addressing psychosocial and spiritual distress, as well as assessing and considering the needs of the patient's family. The loss of a parent or grandparent is often a child's first experience of death and grief. One in 20 children in the United States under the age of 15 will experience the death of a parent, and this figure does not include children who grieve individuals other than their biological parents. Based on United States census data published in 2016, this amounts to over 3.5 million parentally-bereaved children currently living in the United States. Bereavement in children has been observed with increased healthcare utilization, higher rates of mental disorder diagnosis and suicide compared to age-matched peers, and decreased school performance following a death. We consider these metrics to constitute child grief a public health matter of great concern. In the adult care setting, practitioners may not receive training on supporting the specific needs of grieving children. Given the high number of bereaved children and the risk for grief-related negative consequences on development and adjustment, we argue it is imperative that palliative care and hospice providers expand their skillset in supporting the children involved in the lives of ill and dying patients. This session will equip providers with information about the unique developmental needs of grieving children, strategies for talking to children about illness and death, and feasible interventions and resources to inform practice. Participants will gain a broader understanding of risk factors and community-based resources available for necessary referrals and ongoing support. By adequately addressing the needs of the children as well as adults, providers can provide more comprehensive patient-and family-centered care for their patients.