Background: Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person’s experiences and care even though they can feel unprepared for the care they are expected to provide. Therefore, the aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care.
Method: Forty-two next-of-kin to persons with cancer in palliative phase or persons who had died from cancer were interviewed. Theoretical sampling was used during data collection. The data was analysed using classic Grounded Theory methodology to conceptualize patterns of human behaviour.
Results: Constructing stability emerged as the pattern of behaviour through which next-of-kin deal with their main concern; struggling with helplessness. This helplessness includes an involuntary waiting for the inevitable. The waiting causes sadness and frustration, which in turn increases the helplessness. The theory involves; Shielding, Acknowledging the reality, Going all in, Putting up boundaries, Asking for help, and Planning for the inescapable. These strategies can be used separately or simultaneously and they can also overlap each other. There are several conditions that may impact the theory Constructing stability, which strategies are used, and what the outcomes might be. Some conditions that emerged in this theory are time, personal finances, attitudes from extended family and friends and availability of healthcare resources.
Conclusions: The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability. This theory can increase healthcare professionals’ awareness of how next-of-kin struggle with helplessness and thus generates insight into how to support them in this struggle.
Aim: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents’ coping strategies, and map these onto an existing theoretical framework.
Methods: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children’s hospice. Analysis focused on coping strategies, and mapping these onto the framework.
Results: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others.
Conclusion: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
Background: The COVID-19 pandemic has created an environment in which existence is more fragile and existential fears or terror rises in people.
Objective: Managing existential terror calls for being mature about mortality, something with which palliative care providers are familiar and in need of greater understanding.
Methods: Using a case to illustrate, we describe existential terror, terror management, and existential maturity and go on to outline how existential maturity is important for not only the dying and the grieving but for also those facing risk of acquiring COVID-19.
Results: Next, we describe how essential components in attaining existential maturity come together. (1) Because people experience absent attachment to important people as very similar to dying, attending to those experiences of relationship is essential. (2) That entails an internal working through of important relationships, knowing their incompleteness, until able to “hold them inside,” and invest in these and other connections. (3) And what allows that is making a meaningful connection with someone around the experience of absence or death. (4) We also describe the crucial nature of a holding environment in which all of these can wobble into place.
Discussion: Finally, we consider how fostering existential maturity would help populations face up to the diverse challenges that the pandemic brings up for people everywhere.
Background: There is insufficient information on how the burden of caregiving is affected when the family caregiver is a health professional. Studies are needed to investigate this issue.
Aims: The purpose of this study was to reveal difficulties experienced by a nurse family caregiver offering care to a family member diagnosed with end-stage cancer and how she coped with these difficulties.
Methods: This was an autoethnographic study.
Findings: Findings were grouped under three headings: being both a researcher and a subject; effects of caregiving; and coping.
Conclusions: Offering care to a cancer patient has many physiological and psychological effects. If a family caregiver is a health professional, his/her caregiving burden can be even higher. Cultural values affect both life and coping ways of caregivers. It should be kept in mind that family caregivers need support from health professionals whatever their occupations are. Support to caregivers plays an important role in their coping.
Context: Patients with advanced cancer face a life-limiting condition that brings a high symptom burden that often includes pain, fatigue, and psychological distress. Psychosocial interventions have promise for managing symptoms but need additional tailoring for these patients' specific needs. Patients with advanced cancer in the community also face persistent barriers—availability of interventions in community clinics as well as financial and illness-related factors—to accessing psychosocial interventions.
Objectives: The aim of the present study was to assess the feasibility and acceptability of telephone implementation of Engage, a novel brief combined Coping Skills Training and Acceptance and Commitment Therapy protocol, for reducing symptoms and increasing quality of life in community patients with advanced cancer.
Methods: Adult patients with advanced cancer receiving care in the community received Engage, four 60-minute manualized telephone sessions delivered by a trained psychotherapist and completed pretreatment and post-treatment assessments.
Results: Engage was feasible, achieving 100% accrual (N = 24) of a heterogeneous sample of patients with advanced cancer, with good retention (88% completed). Acceptability was demonstrated via satisfaction (mean 29 of 32; SD 2), engagement (95% attendance), and use of skills. Secondary analyses pointed to reductions in pain interference, fatigue, psychological distress, and improvements in psychological acceptance and engagement in value-guided activity after treatment.
Conclusion: Engage, our brief novel combined Coping Skills and Acceptance and Commitment Therapy intervention, demonstrated initial feasibility and acceptability when delivered over the telephone and increased access for community clinic patients with advanced cancer. Future research will assess the comparative efficacy of Engage in larger randomized trials.
Elisabeth Kübler-Ross' seminal 1969 work, On Death and Dying, opened the door to understanding individuals' emotional experiences with serious illness and dying. Patient's emotions, however, are only half the story in the patient-physician relationship. In recent years physicians' emotional reactions have gotten more attention. These sometimes-unacknowledged emotions influence how we approach our work, including life and death decisions. This article reviews some of the main emotions physicians experience when caring for seriously ill and dying patients and the challenges physicians face in regulating their emotions in a professional setting. We also discuss some of the ways that physician emotion may influence medical decision-making and contribute to conflict. Attention to the emotional level of physician experience may promote better care.
Prolonged grief disorder, characterized by severe, persistent, and disabling grief, has recently been included in the International Classification of Diseases-11 (ICD-11). Emotional disturbances are central to such complicated grief responses. Accordingly, emotion regulation is assumed critical in the development, persistence and treatment of complicated grief. Yet, a comprehensive review on this topic is lacking. We conducted a systematic review (PROSPERO: CRD42017076061) searching PsychInfo, Web of Science and PubMed to identify quantitative research examining relationships between emotion regulation and complicated grief. Sixty-four studies on 7715 bereaved people were identified, focusing on a variety of emotion regulation strategies (i.e., experiential avoidance, behavioral avoidance, expressive suppression, rumination, worry, problem solving, cognitive reappraisal, positive thought, and mindfulness). Our synthesis showed strong evidence that experiential avoidance and rumination play a role in the persistence of complicated grief. More generally, surveys support positive associations between putative maladaptive emotion regulation strategies and complicated grief, and negative associations between putative adaptive emotion regulation strategies and complicated grief. Laboratory research yielded mixed results. Emotion regulation is critical in complicated grief, and in particular experiential avoidance and rumination form important targets in complicated grief treatments. We advise expanding current knowledge, by employing more advanced, intensive data collection methods and experiments across diverse samples. Increasing knowledge in this domain will improve clinical practice.
Context: Doctors caring for patients with life-limiting illness are often exposed to emotional distress.
Objectives: We aimed to explore the experiences and perceptions of junior doctors working full time in a palliative care rotation. We examined the lessons junior doctors learnt in managing their emotions as they face patients' death on a daily basis.
Methods: We conducted a qualitative study with seven focus group discussions involving 21 junior doctors (medical officers and residents). Data were analyzed using qualitative thematic analysis to identify the themes related to the perceived challenges of these junior doctors and how they managed the struggles. Interviews were conducted with junior doctors who spent at least two months in a palliative care unit in a tertiary hospital or an inpatient hospice.
Results: junior doctors caring for dying patients in a palliative care rotation faced internal conflicts. Conflicting feelings arose because of differing expectations from their preconceived notions of their roles as doctors. Two main themes of internal struggles were professional distancing and emotional detachment as well as prognostic uncertainty and when to withhold and withdraw medical treatments. Coping strategies that helped included mentoring and role modeling provided by palliative care physicians, reframing their care experiences and reflection to find meaning in their work.
Conclusion: A palliative care rotation exposes junior doctors to emotionally overwhelming experiences. With proper guidance, this exposure is useful in teaching junior doctors important coping strategies, allowing learning to occur at a deeper level.
Objective: to explore self-perception competence among Spanish nurses dealing with patient death and its relationship with work environment, evidence-based practice, and occupational stress.
Method: a cross-sectional web-based survey collected information from a convenience sample of 534 nurses from professional Spanish Colleges who answered four validated questionnaires: Coping with Death Scale, Practice Environment Scale of the Nursing Work Index, Perception of Evidence-Based Practice (EBP) and Nursing Stress Scale.
Results: a total of 79% of the participants were women, the average age was 40 years old, 38% had a postgraduate degree and 77% worked in public health settings. Many nurses evaluated their work environment as unfavorable (66%), reported high occupational stress (83.5±14.9), and had high scores on knowledge/skills in EBP (47.9±11.3). However, 61.2% of them perceived an optimal coping (>157 score). The multivariate logistic model indicated positive associations with work environment and EBP characteristics (OR: 1.30, p=0.054; OR: 1.04, p=0.007; OR: 1.13, p<0.001, respectively) but negative associations with occupational stress and short work experience (OR: 0.98, p=0.0043; OR: 0.74, p<0.002, respectively). These factors explained 23.1% of the coping variance (p<0.001).
Conclusion: although most nurses perceived optimal coping, the situation could be enhanced by modifying several contextual factors. The identification of these factors would improve the quality of end-of-life care by facilitating nursing management.
BACKGROUND: Palliative nursing care provides the best possible quality of life (QoL) for patients who face life-threatening conditions, such as breast cancer, and their families. It seems that coping with breast cancer can affect couples' QoL. Hence, this study aimed to assess the potential role of ways of coping (WOC) in QoL among husbands of women with breast cancer.
METHOD: In this cross-sectional study, 150 men whose wives were affected by non-metastatic breast cancer and were at least 4 months post-diagnosis, were recruited. The Persian version of the WOC questionnaire (WOCQ) and the World Health Organization's QoL brief questionnaire (WHOQoL-BREF) were used to measure WOC and QoL. ThePearson correlation test was applied to assess bivariate correlation of the variables.
FINDINGS: A significant direct correlation was found between the total WHOQoL-BREF score and all subscales of WHOQ, except escape-avoidance coping (r=-0.017, P=0.830). Most dimensions of the WHOQoL-BREF and WOCQ subscales were correlated significantly and directly. Nevertheless, escape-avoidance coping had a significant indirect correlation with the physical dimension of WHOQoL-BREF (r=-0.220, P=0.007).
CONCLUSION: Findings indicated a need for coping-based interventions in palliative nursing to improve QoL in husbands of women with breast cancer.
PURPOSE: To explore the attitude of nursing professionals towards death.
DESIGN: Systematic qualitative review methods were used.
METHODS: A search was conducted in the PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and CUIDEN databases. This study included 17 articles.
FINDINGS: Thirteen categories emerged, which were grouped into three themes: meanings and feelings during the dying process; coping strategies in the face of death; and the importance of training, experience, and providing a dignified death. In the different accounts of the participants, it was found that death had a large negative emotional impact on them, that the participants complained about the lack of previous training in the care of dying patients, and that avoiding these complex situations was one of the strategies most commonly used by professionals to face the death of a patient.
CONCLUSIONS: The lack of training in the basic care of terminally ill patients, as well as today's preconceived negative idea about death, both cause health professionals to experience situations of great stress and frustration resulting, on many occasions, in resorting to avoidance of these situations, thus preventing dying with dignity.
CLINICAL RELEVANCE: In this article, we explore the consequences of this process for nursing professionals, common coping strategies, and possible areas for improvement, such as the need for the training of nursing professionals in the care of terminally ill patients and their families.
The increasing number of cancer patients and prolonged periods of illness have led to an increase in nurses' stress and various other problems. This research aimed to identify the stress resulting from caring for cancer patients and the methods for coping with stress among cancer care nurses. The research subjects were 180 clinical nurses caring for cancer patients in a hospital in Korea. Stress caused by excessive workloads, inappropriate compensation, and interpersonal conflicts with physicians was high. There was a difference in stress according to age. Coping strategies differed according to religion, education, occupation, hospice education, job satisfaction, and leisure activities. The higher the stress, the greater the number of coping strategies used. Problem-related coping was associated with more diverse stressors. Stress characteristics differed according to various factors, whereas stress coping strategies depended on the stress characteristics of clinical nurses caring for cancer patients. Future research following a critical approach will be needed to elucidate the compassion fatigue related to the stress strategies of clinical nurses. These findings could contribute to the development of interventions to reduce stress in clinical nurses by providing evidence on the stress and coping methods of nurses who provide palliative care for cancer patients.
Background: Bereavement support is a core part of palliative care. However, the evidence base is limited by a lack of consistency in the outcomes used to evaluate services and models of support, which makes it difficult to compare approaches. Core Outcome Sets (COS) represent the minimum that should be measured in research into specific conditions or services. The aim of this study was to use a stakeholders’ perspective to develop a COS for evaluating bereavement support for adults in adult palliative care settings.
Methods: A list of outcomes relevant to bereavement support was created following a systematic review of the quantitative and qualitative literature. At an expert workshop 21 stakeholders discussed their views on the most important outcomes and compared these to and critiqued the lists constructed from the review. These lists and discussions informed a two round international DELPHI survey (n = 240) designed to reach consensus on which outcomes/outcome dimensions should be included in the COS. To prioritise and validate the items emerging from the survey, participants at a subsequent consensus day ranked the relative importance of these items (n = 23). A final feedback exercise with these consensus day participants was conducted to confirm the selection of outcomes and dimensions.
Results: ‘Ability to cope with grief’ and ‘Quality of life and mental wellbeing’ were selected as two core outcomes. Twenty-one different dimensions to explore when assessing these outcomes were also identified. The coping related dimensions have been categorised as: Negative and overwhelming grief; Communication and connectedness; Understanding, accepting and finding meaning in grief; Finding balance between grief and life going forwards; Accessing appropriate support. Those relating to quality of life and wellbeing have been categorised as; Participation in work and/or regular activities; Relationships and social functioning; Positive mental wellbeing and Negative mental and emotional state.
Conclusion: This COS outlines a more consistent way forward for bereavement researchers and practitioners, whilst also orientating towards public health and resilience-based approaches to bereavement care. Further work is planned to identify and develop measures which are specific to this core outcome set, and which will facilitate the future comparability of bereavement services and interventions.
Objective: Even when medical treatments are limited, supporting patients’ coping strategies could improve their quality of life. Greater understanding of patients’ coping strategies, and influencing factors, can aid developing such support. We examined the prevalence of coping strategies and associated variables.
Methods: We used sociodemographic and baseline data from the ACTION trial, including measures of Denial, Acceptance, and Problem-focused coping (COPE; Brief COPE inventory), of patients with advanced cancer from six European countries. Clinicians provided clinical information. Linear mixed models with clustering at hospital level were used.
Results: Data from 675 patients with stage III/IV lung (342, 51%) or stage IV colorectal (333, 49%) cancer were used; mean age 66 (10 SD) years. Overall, patients scored low on Denial and high on Acceptance and Problem-focused coping. Older age was associated with higher scores on Denial than younger age (ß = 0.05; CI[0.023; 0.074]), and patients from Italy (ß = 1.57 CI[0.760; 2.388]) and Denmark (ß = 1.82 CI[0.881; 2.750]) scored higher on Denial than patients in other countries.
Conclusions: Patients with advanced cancer predominantly used Acceptance and Problem-focused coping, and Denial to a lesser extent. Since the studied coping strategies of patients with advanced cancer vary between subpopulations, we recommend taking these factors into account when developing tailored interventions to support patients’ coping strategies.
Purpose: The aim of the study was to examine the psychosocial problems and spiritual coping styles of the family caregivers related to patients receiving palliative care.
Design and Methods: The research sample consisted of 76 family caregivers related to palliative care patients. The data collection method used were questionnaire forms. The two forms used were Hospital Anxiety Depression Scale and Religious Coping Methods Scale.
Findings: The mean anxiety score of the participants was 10.86 ± 4.30, mean depression score was 9.38 ± 3.66, mean positive coping scale score was 25.31 ± 3.85, and mean negative coping scale score was 10.32 ± 3.38.
Practice Implications: Healthcare professionals involved in palliative care are encouraged to evaluate the spiritual experiences of family caregiver to support their wellbeing.
Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cope together and manage problems as a dyad. In this article, we describe the nature and correlates of coping in this population, highlight the role of palliative care to promote effective coping strategies in patients and caregivers, and review evidence supporting the beneficial effects of palliative care on patient coping as well as the mechanisms by which improved coping is associated with better outcomes. We conclude with a discussion of the limitations of the state of science, future directions, and best practices on the basis of available evidence.
Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health.
BACKGROUND: Resilience is a multidimensional construct that explains why people facing the consequences of adversity and stress can have a positive outcome, emphasizing adjustment to experiences that are perceived as threatening.
OBJECTIVE: The aim of this study is to review the construct of resilience and associated variables in caregivers of patients with chronic, advanced illness and at the end of life.
METHODS: The review included studies published between January 2009 and January 2019, using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guide reporting. The Medline, ScienceDirect, HINARI, PsychINFO, and SciELO databases were used for bibliographic exploration to identify research studies that examined the impact of resilience on adaptation and overall well-being in caregivers of patients with chronic and advanced illness.
RESULTS: A total of 23 quantitative and qualitative studies were identified whose aim was to describe the role of resilience in adaptation and coping in caregivers. In these studies, resilience was associated with a positive impact on the quality of life and emotional distress. Communication and social support increase resilient coping strategies. In most selected articles, the sampling strategy used was convenience sampling. Data collection used evaluation scales related to resilience and associated variables for quantitative studies, and semistructured interviews were used for qualitative studies.
CONCLUSION: Promoting a resilient coping style in caregivers reduces the distress that normally results from illness-related changes in the biopsychosocial and spiritual dimensions. A resilient coping style can diminish the risk of stress and burden, and promote adaptation in the caregiver.
PURPOSE: Exposure to end-of-life and chronic illness on a daily basis may put palliative healthcare professionals' well-being at risk. Resilience may represent a protective factor against stressful and demanding challenges. Therefore, the aim is to systematically review the quantitative studies on resilience in healthcare professionals providing palliative care to adult patients.
METHODS: A literature search on PubMed, Scopus, Web of Science and PsycINFO databases was performed. The review process has followed the international PRISMA statement guidelines.
RESULTS: At the initial search, a total of 381 records were identified. Twelve articles were assessed for eligibility and, finally, 6 studies met all the inclusion criteria. Of these, four researches were observational and two interventional pilot studies. From the systematic synthesis, palliative care providers' resilience revealed to be related to other psychological constructs, including secondary traumatic stress, vicarious posttraumatic growth, death anxiety, burnout, compassion satisfaction, hope and perspective taking.
CONCLUSIONS: The current systematic review reported informative data leading to consider resilience as a process modulator and facilitator among palliative care professionals. A model on palliative healthcare providers' experience and the role of resilience was proposed. Further studies may lead to its validation and implementation in assessment and intervention contributing to foster palliative healthcare professionals' well-being.
Grief and loss are universal experiences for all individuals and communities. The experience of a loss due to death and the bereavement process to follow are influenced by an individual's religious values and beliefs. In this article, we discuss the Sikh bereavement process in the United States. We provide brief personal narratives as exemplar case studies, highlight religious and cultural factors, and explain potential challenges of bereavement. Finally, we discuss implications for mental health clinicians and other providers of services that surround death and dying.