Seeking,accepting and declining help for emotional distress in cancer: A systematic review and thematic synthesis of qualitative evidence

Many individuals affected by cancer who experience emotional distress report not wanting help. This review aims to understand why individuals affected by cancer seek, accept or decline help for emotional distress and what influences these actions. A systematic review and thematic synthesis of the qualitative literature was conducted. Using pre‐defined search terms, four electronic databases were searched from January 2000 to May 2016. Pre‐determined inclusion and exclusion criteria were then applied. Identified papers were quality appraised. In total, 32 papers were included in the synthesis. Four themes emerged from data synthesis: attaining normality—the normality paradox; being emotionally literate; perceptions of help; needs‐support gap. Attaining normality is ideographic, context dependent and temporally situated; some individuals maintain normality by not seeking/declining help whereas others seek/accept help to achieve a new normality. Thus, attaining normality paradoxically functions to explain both why individuals sought/accepted help or did not seek/declined help. Data indicate that a context dependent, systems thinking approach is merited to enhance psychosocial care. In particular, clinicians must actively explore the personal context of an individual's distress to ensure that help desired and help offered are mutually understood. Further research must address the limitations of the current evidence base to advance theoretical understanding.     

Lifestyle interference and emotional distress in family caregivers of advanced cancer patients

BACKGROUND: Providing end-of-life care at home to a family member with advanced cancer can have a negative impact on the emotional well-being of the family caregiver. The current study examined the impact of providing care on lifestyle and emotional well-being in a sample of caregivers to patients with advanced cancer. The mediation of lifestyle interference between the amount of care provided and emotional distress was specifically examined. METHODS: Forty-four family caregivers participated in a structured quantitative interview. Lifestyle interference was assessed by the Caregiving Impact Scale, amount of care provided was assessed by the Caregiver Assistance Scale, and emotional distress was assessed by the Profile of Mood States-Short Form. Pearson and partial correlations tested whether lifestyle interference mediated the relationship between caregiving assistance and emotional distress. Regression analyses determined overall correlates of emotional distress. RESULTS: Three criteria, required to substantiate mediation, were met for total mood disturbance and the depression and tension subscales. An overall regression model identified education level and lifestyle interference to be significant and unique correlates of emotional distress. CONCLUSIONS: The current results suggest that caregivers experience increased emotional distress, regardless of the amount of care provided, when limited in their ability to participate in valued activities and interests. In addition, caregivers with less than a high school education experience more emotional distress. Therefore, helping caregivers maintain valued aspects of their lifestyle should be an important element of home care.     

The effect of horticultural therapy on the quality of life of palliative care patients

Palliative care patients experience a variety of needs and perceive their quality of life as being only fair. This study adopted a single-group repeated-measure design to investigate the effect of horticultural therapy on the quality of life of palliative care patients using the Quality of Life Concern in End of Life Questionnaire. Significant differences in the domains of “existential distress” and “health care concern” were observed immediately postintervention and at 4 weeks postintervention, respectively. No other significant differences were seen in the other domains or in the total mean score of the outcome measure.     

Global Health System Resilience during Encounters with Stressors – Lessons Learnt from Cancer Services during the COVID-19 Pandemic

AimsThe protracted COVID-19 pandemic has overwhelmed health systems globally, including many aspects of cancer control. This has underscored the multidimensional nature of cancer control, which requires a more comprehensive approach involving taking a wider perspective of health systems. Here, we investigated aspects of health system resilience in maintaining cancer services globally during the COVID-19 pandemic. This will allow for health systems to be resilient to different types of system stressors/shocks in the future, to allow cancer care to be maintained optimally.Materials and methodsUsing the World Health Organization health system framework (capturing aspects of service delivery, health workforce, information, medical products, vaccines and technologies, financing and governance and leadership), we carried out a comparative analysis of the impact of COVID-19 and the synthesis of the findings in responses in cancer care in 10 countries/jurisdictions across four continents comprising a wide diversity of health systems, geographical regions and socioeconomic status (China, Colombia, Egypt, Hong Kong SAR, Indonesia, India, Singapore, Sri Lanka, UK and Zambia). A combination of literature and document reviews and interviews with experts was used.ResultsOur study revealed that: (i) underlying weaknesses of health systems before the pandemic were exacerbated by the pandemic (e.g. economic issues in low- and middle-income countries led to greater shortage of medication and resource constraints compounded by inadequacies of public financing and issues of engagement with stakeholders and leadership/governance); (ii) no universal adaptive strategies were applicable to all the systems, highlighting the need for health systems to design emergency plans based on local context; (iii) despite the many differences between health systems, common issues were identified, such as the lack of contingency plan for pandemics, inadequate financial policies for cancer patients and lack of evidence-based approaches for competing priorities of cancer care/pandemic control.ConclusionWe identified four key points/recommendations to enhance the resilient capacity of cancer care during the COVID-19 pandemic and other system stressors: (i) effective pandemic control approaches in general are essential to maintain the continuity of cancer care during the emergency health crises; (ii) strong health systems (with sufficient cancer care resources, e.g. health workforce, and universal health coverage) are fundamental to maintain quality care; (iii) the ability to develop response strategies and adapt to evolving evidence/circumstances is critical for health system resilience (including introducing systematic, consistent and evidence-based changes, national support and guidance in policy development and implementation); (iv) preparedness and contingency plans for future public health emergencies, engaging the whole of society, to achieve health system resilience for future crises and to transform healthcare delivery beyond the pandemic.     

IPOS Sutherland Memorial Lecture: psycho-oncology and health care research

Remarkable changes of health-care systems, increasing costs of health care and of social inequality in modern societies, an aging population and the increase of chronic illnesses such as cancer implicate various future challenges for the provision of health care. Health-care research aims to improve the effectiveness and efficiency of patient-oriented services involving the evaluation of innovative treatment approaches and settings. It deals with the patients' path through different areas of health-care systems in order to identify significant factors for the provision of quality assurance of structures and resources concerning treatments, processes and health outcomes. Health-care research focusses on three main topics that play an important role for quality management: (1) the admission to health-care services and assessment strategies including indication, utilization and specificity of settings and target groups; (2) the treatment process including the implementation, standardization and flexibility of services and dose-effect relationship of interventions; (3) health-care outcome including effectiveness and efficiency of interventions and services, the cost-benefit relationship and the transfer from research to health-care practice. Given the objectives of health-care research, the topics of health-care research in psychosocial care for cancer patients include the study of structural conditions of psycho-oncological services, the epidemiology of distress and mental disorders and the subjective need of psycho-oncological support in cancer patients, the improvement of psycho-oncological measures and assessment strategies in daily treatment, the study of psycho-oncological interventions under routine conditions, and quality assurance. Requirements of future health-care research and developments of psycho-oncology including aspects of orientation, strategies, health-care equity, and resources are discussed.     

Health care use during cancer survivorship: Review of 5 years of evidence

Improvements in treatment strategies have resulted in increasing survival rates among patients diagnosed with cancer but also result in a growing population of individuals who have greater health care needs. These needs will persist from diagnosis throughout the continuing phase of care, or the survivorship phase. To better define models of survivorship care, there must be a strong evidence base in survivor health care use patterns. The objective of this review, which covers studies from 2012 to January 2018, was to evaluate the available evidence on patterns of health care visits among survivors of adult cancers and to understand what is known about the rate of health care visits, the physician specialties associated with these visits, and/or the types health care settings (eg, outpatient, emergency room). The findings underscore the importance of primary care, with the majority of studies reporting that >90% of survivors visited a primary care provider in the prior year. Visits to oncologists and/or other physician specialties were positively associated with receiving cancer screenings and obtaining quality care for noncancer-related conditions. High care density/low care fragmentation between physician specialties had lower costs and a lower likelihood of redundant health care utilization. The follow-up in almost all studies was 3 years, providing short-term evidence; however, as the survivorship period lengthens with improved treatments, longer follow-up will be required. The long-term patterns with which survivors of cancer engage the health care system are critical to designing long-term follow-up care plans that are effective in addressing the complex morbidity that survivors experience.     

Oncologists’ identification of mental health distress in cancer patients: Strategies and barriers

The purpose of this research was to examine oncologists’ perspectives on indicators of mental health distress in patients: what strategies they use to identify these indicators, and what barriers they face in this task. Twenty‐three oncologists were interviewed, and the grounded theory method of data collection and analysis was used. Oncologists perceived distress to be a normative part of having cancer and looked for affective, physical, verbal and behavioural indicators using a number of strategies. Barriers to identification of mental health distress included difficulty in differentiating between mental health distress and symptoms of the disease, and lack of training. A systematic, time‐efficient assessment of symptoms of emotional distress is critical for identification of psychiatric disorders among patients and differentiating normative emotional responses from psychopathology. Clinical bias and misdiagnosis can be a consequence of an ad hoc, intuitive approach to assessment, which can have consequences for patients and their families. Once elevated risk is identified for mental health distress, the patient can be referred to specialised care that can offer evidence‐based treatments.     

Integrated care in cancer: What is it,how is it used and where are the gaps? A textual narrative literature synthesis

Integrated care is an underpinning concept of contemporary health care policy proffered as a strategy to overcome the fragmentations in care encountered by people with complex care needs (Shaw et al. [2011] What is Integrated Care? An Overview of Integrated Care in the NHS). Cancer patients have potential to benefit from such policy, often having needs that extend beyond cancer. This paper seeks to understand how the concept of integrated care is used in the cancer literature. A search of leading databases was conducted for original research relating to integrated care or an integration intervention aiming to improve outcomes of cancer patients, and analysed using textual narrative synthesis. 38 papers were included, each with a focus on improving cancer‐specific aspects of care enhancing the capabilities of the cancer multidisciplinary team. Of the eight studies involving integration between the cancer service and other care providers, all focused on utilising the external provider to deliver aspects of cancer care or placed them in a passive role, as survey participant, a recipient of cancer‐related clinical information or as the comparator “usual care” arm. Within the cancer literature, integration is predominantly used to describe initiatives to improve cancer‐related aspects of care. Less attention is given to integration initiatives that enhance coordination across levels of the healthcare system or service providers.     

Communication about the ending of anticancer treatment and transition to palliative care.

BACKGROUND: Communication about the ending of anticancer treatment and transition to palliative care is a difficult task for oncologists. The primary aims of this study were to clarify family-reported degree of emotional distress and the necessity for improvement in communication methods when communicating about the ending of anticancer treatment, and to identify factors contributing to the levels of emotional distress and the necessity for improvement. METHODS: A multi-center questionnaire survey was conducted on 630 bereaved family members of cancer patents who received specialized palliative care in Japan. A total of 318 responses were analyzed (effective response rate, 62%). RESULTS: Thirty-nine percent of the bereaved family members reported that they were 'very distressed' in receiving information about the ending of anticancer treatment, and 19% reported 'considerable' or 'much' improvement was necessary in the communication methods. High-level emotional distress was significantly associated with younger patient age, female family gender, the experience of the physician stating she/he could do nothing for the patient, the physician's unwillingness to explore their feelings, and prognostic disclosure of definite survival periods without probabilities or ranges. High levels of perceived necessity for improvement in the communication methods were significantly associated with the experience of the physician stating she/he could do nothing for the patient, physicians not explaining treatment goals in specific terms, physicians not pacing the explanation with the state of family preparation, physicians not being knowledgeable about the most advanced treatments, and the atmosphere not being relaxing enough to ask questions. CONCLUSIONS: In receiving the information about ending anticancer treatment, a considerable number of families experienced high levels of emotional distress and felt a need for improvement of the communication methods. The strategies to alleviate family distress could include: (i) assuring that physicians will do their best to achieve specific goals, without saying that they can do nothing for the patient; (ii) providing information, including estimated prognosis, in careful consideration of families' preparation and the uncertainty for each patient; (iii) exploring families' emotions and providing emotional support; (iv) acquiring knowledge about advanced treatments; and (v) making the atmosphere relaxing enough to allow families to ask questions.     

Addressing distress management challenges: Recommendations from the consensus panel of the American Psychosocial Oncology Society and the Association of Oncology Social Work

Distress management (DM) (screening and response) is an essential component of cancer care across the treatment trajectory. Effective DM has many benefits, including improving patients' quality of life; reducing distress, anxiety, and depression; contributing to medical cost offsets; and reducing emergency department visits and hospitalizations. Unfortunately, many distressed patients do not receive needed services. There are several multilevel barriers that represent key challenges to DM and affect its implementation. The Consolidated Framework for Implementation Research was used as an organizational structure to outline the barriers and facilitators to implementation of DM, including: 1) individual characteristics (individual patient characteristics with a focus on groups who may face unique barriers to distress screening and linkage to services), 2) intervention (unique aspects of DM intervention, including specific challenges in screening and psychosocial intervention, with recommendations for resolving these challenges), 3) processes for implementation of DM (modality and timing of screening, the challenge of triage for urgent needs, and incorporation of patient-reported outcomes and quality measures), 4) organization—inner setting (the context of the clinic, hospital, or health care system); and 5) organization—outer setting (including reimbursement strategies and health-care policy). Specific recommendations for evidence-based strategies and interventions for each of the domains of the Consolidated Framework for Implementation Research are also included to address barriers and challenges.     

Evaluating partnership working: lessons for palliative care

Partnership working in palliative care is being increasingly promoted as the solution to poorly coordinated health and social care services. A key example is the UK National Institute for Clinical Excellence (NICE) guidance on supportive and palliative care. However, partnerships have costs in negotiating, developing and maintaining working relationships and translating these into successful outcomes, so may not always be the best or most effective method of service improvement. This article explores structural, procedural, financial, professional and legitimacy barriers to partnership working. We conclude that these five barriers could be sufficient to destroy emerging partnerships. Nowhere in the NICE guidance on supportive and palliative care are such barriers acknowledged. We suggest that current and projected palliative care partnerships should be critically evaluated against both process and outcome success criteria. Such evaluations must be integral to partnerships, to learn about what makes an effective palliative care partnership, and what affects partnerships have on patient care and outcomes. Partnerships may not be the panacea for issues of fragmentation, and should not be the only solution considered. Lessons should be learnt from the UK's promulgation of partnerships to ensure that these are used appropriately and only where patient benefit can be anticipated.     

Psychological distress among women with breast problems

Visiting a physician for evaluation of a breast problem which could be cancer is often assumed to be a highly stressful experience. This study evaluates the degree of emotional distress in women about to undergo examination for signs or symptoms of breast disease. Three hundred twenty-two women who attended the Breast Problem Clinic of the Wisconsin Clinical Cancer Center were studied. Each patient completed standard self-administered psychologic tests to evaluate mood disturbance (Profile of Mood States [POMS]) and responsibility taken for overall health care (Health Locus of Control [HLCS]). Results of these tests were compared to control populations of normal college women and female psychiatric outpatients. The women seen in the Breast Problem Clinic were significantly less distressed on POMS subscales which measure depression, anger, fatigue, and confusion than both psychiatric outpatients and normal college women (P less than 0.001). A second group of 17 women who were seen in the hospital 24 to 48 hours before definitive breast cancer surgery were also studied. Women evaluated as inpatients before breast cancer surgery were more distressed than the women attending the outpatient clinic on most POMS subscales, but were not clearly different from normal college women. No differences between the groups were seen for the HLCS. These data indicate that emotional distress among women attending a breast problem clinic is not extraordinary, but that emotional distress heightens when the diagnosis of breast cancer is known.     

Development of guidelines for distress management in Korean cancer patients

Objectives: Psychological distress is common in cancer patients, and the need to develop a system for assessing and managing distress is widely recognized. This project developed recommendations that are feasible for Korean cancer patients and the Korean healthcare system. Methods: Based on the findings from a series of studies in the context of this project, we developed guidelines following the steps and parameters recommended by the Scottish Intercollegiate Guidelines Network (SIGN). The Development Group consisted of individuals from several professions, including psychiatrists, psychologists, nurses, social workers, a health policy expert, and a methodologist. Opinions from various healthcare providers, patients, and related societies were also reflected in the guidelines. Results: The main recommendations for distress management in cancer patients were the following: (1) a concept of distress in Korean cancer patients, screening tools, management algorithms, and triage approaches was developed and (2) four symptom‐specific guidelines with management algorithms were proposed for depression, anxiety, insomnia, and delirium. Conclusion: This is the first effort to develop recommendations for distress management in psycho‐oncology in Korea. These guidelines offer standards for psychosocial care for cancer patients in Korea. We have made a significant step toward integrated cancer care that incorporates the psychosocial care of patients as an essential component of patient care in a Korean oncology context. This version will be updated constantly to keep up with emerging evidence from empirical research and clinical experience. Copyright © 2011 John Wiley & Sons, Ltd.     

The good and bad death perceptions of health professionals working in palliative care

The development of palliative care originated from shortcomings in mainstream health services. Palliative care aims to cater for both the psycho-social needs of dying patients and the allieviation of their physical symptoms. This is reflected by the good and bad death perceptions of palliative care workers, though increasing signs of institutionalization in palliative care have challenged the idealization of a good death. This study aimed to investigate the health professionals'perception of both a good and a bad death and their perception of patients'awareness context. Seventy questionnaires were distributed to nurses and social workers. The 50 returned questionnaires revealed that health professionals perceived a good death as controlling the patients'physical symptoms and psychologically preparing them, whilst a bad death was perceived as the inability to control pain and deal with any psychological distress. Factor analysis identified three main factors (lack of patient distress, patient control and staff's supporting role perceptions) in the perception of a good death whereas four main factors (the negative effect of death on the family, a patient's non-acceptance of death, not dealing with patients'fears and the age of a dying person) were identified with the perception of a bad death. Overall, health professionals perceived themselves to be open and sensitive in communicating with patients although over half felt poorly supported by other staff.     

The relationship between patients' experiences of continuity of cancer care and health outcomes: a mixed methods study

It is difficult to define continuity of care or study its impact on health outcomes. This study took place in three stages. In stage I we conducted qualitative research with patients, their close relatives and friends, and their key health professionals from which we derived a number of self completion statements about experienced continuity that were tested for reliability and internal consistency. A valid and reliable 18-item measure of experienced continuity was developed in stage II. In stage III we interviewed 199 patients with cancer up to five times over 12 months to ascertain whether their experiences of continuity were associated with their health needs, psychological status, quality of life, and satisfaction with care. The qualitative data revealed that experienced continuity involved receiving consistent time and attention, knowing what to expect in the future, coping between service contacts, managing family consequences, and believing nothing has been overlooked. Transitions between phases of treatment were not associated with changes in experienced continuity. However, higher experienced continuity predicted lower needs for care, after adjustment for other potential explanatory factors (standardised regression coefficients ranging from -0.12 (95% CI -0.20, -0.05) to -0.32 (95% CI -0.41, -0.23)). Higher experienced continuity may be linked to lower health care needs in the future.     

Palliative Care in Advanced Cancer Patients: How and When?

Cancer patients develop severe physical and psychological symptoms as a result of their disease and treatment. Their families commonly suffer great emotional distress as a result of caregiving. Early palliative care access can improve symptom control and quality of life and reduce the cost of care. Preliminary results show that early palliative care access can also extend survival. Unfortunately, only a minority of cancer centers in the U.S. have the two most important resources for palliative care delivery: outpatient palliative care centers and inpatient palliative care units. In this article, we use a case presentation to discuss the impact of early palliative care access in light of the currently available evidence, and we recommend ways to improve early access to palliative care through education and research.     

Self-reported physical and emotional health of women in a low- fat, high-carbohydrate dietary trial (Canada)

Objectives: While decreased intake of dietary fat may have significant positive effects on women's health by reducing the risk of cancer and other diseases, little research has been carried out to determine the potential adverse effects of dietary fat reduction. This study compares the self-reported physical and emotional health of 402 low fat intervention and control group participants in the Canadian Diet and Breast Cancer Prevention Trial.Methods: Subjects who had been participating in the dietary intervention trial for at least 2 years completed 3 mailed questionnaires: two designed to assess physical and emotional health (MOS 36-Item Short-Form Health Survey (SF-36) and the Women's Health Questionnaire (WHQ)) and a Health Practices Survey.Results: There were no significant differences between the study groups on total scores or any of the subscales/health domains for the SF-36 or the WHQ. In premenopausal women only, intervention group subjects scored significantly lower on the vasomotor symptoms scale, indicating less symptom experience. Frequency of visits to physicians and alternative health practitioners were not significantly different between the study groups.Conclusions: The results of this study suggest that participation in a low-fat, high-carbohydrate dietary intervention did not have any detrimental effects on participants'; self-reported physical health or emotional well-being.     

Problem-solving style and adaptation in breast cancer survivors: a prospective analysis

Introduction  Emotional care of the breast cancer patient is not well understood; this lack of understanding results in both a high cost to the patient, as well as the health care system. This study examined the role of problem-solving style as a predictor of emotional distress, adjustment to breast cancer, and physical function immediately post-surgery and 12 months later. Methods  The sample consisted of 121 women diagnosed with breast cancer and undergoing surgery as a primary treatment. The survivors completed a measure of problem-solving style and three outcome measures immediately post-surgery, as well as at 1 year later. There was a 95.6% retention rate at 1 year. Results  Multiple hierarchical regressions revealed, after controlling for patient demographics and stage of cancer, that problem-solving style (particularly personal control) was associated with emotional distress, adjustment to chronic illness, and physical function immediately following surgical intervention. In addition, a more positive problem-solving style was associated with less emotional distress, but not a better adaptation to a chronic illness or physical functioning 12 months later; the Personal Control again was the best single predictor of the emotional distress, adding 10% of the variance in predicting this outcome. Conclusions  The utility of post-surgery assessment may help identify those in need for problem-solving training to improve these outcomes at 1 year. Future studies need to determine the impact of interventions tailored to levels of problem-solving styles in cancer survivors over time. Implications for Cancer Survivors  Understanding the role of problem solving style in breast cancer survivors deserves attention as it is associated with emotional distress immediately and one year after medical intervention. Problem-solving style should be evaluated early, and interventions established for those most at risk for emotional distress.     

Are cancer survivors following the national comprehensive cancer network health behavior guidelines? An assessment of patients attending a cancer survivorship clinic

Purpose: Engaging in positive health behaviors post-treatment is important for cancer survivors' health. However, little is known about whether survivors are practicing health promoting behaviors. We aimed to explore whether survivors are meeting the recent health behavior guidelines set forth by the National Comprehensive Cancer Network (NCCN) and to examine associations between health behaviors and distress. Methods: Sixty-six survivors completed a cross-sectional questionnaire assessing health behaviors prior to an initial appointment at a survivorship care clinic. Information about sociodemographic, clinical, and psychosocial variables and six health behavior recommendations, including physical activity, sunscreen use, tobacco use, alcohol consumption, weight management, and annual primary care provider visits, was collected. Findings: Only 7.6% of survivors met all six NCCN health behavior guidelines. One in ten (10.6%) survivors had smoked a cigarette in the previous 30 days, and half did not use sunscreen regularly (50%), had an unhealthy body mass index (53%), and did not engage in >10 MET-h/week of physical activity (50%). Approximately 1 in 6 (15.1%) survivors reported drinking beyond the recommended limit, and a similar proportion had not seen a PCP in the previous year (27.3%). Clinically significant levels of distress (>5; range 0–10) on the NCCN distress scale were reported by 64.6% of survivors. Participants with clinical levels of distress were less likely to adhere to health behavior guidelines than those who were not distressed (p = .002). Conclusions: Overall, survivors engaged at a survivorship clinic did not meet the NCCN recommended health behavior guidelines. Implications for Psychosocial Providers or Policy: Survivors' health behaviors and distress should be assessed and intervened upon during survivorship care. Survivorship clinics may provide a unique forum in which to provide ongoing behavioral health counseling and psychosocial support for these patients.