Experiential Avoidance in Advanced Cancer: a Mixed-Methods Systematic Review.

BACKGROUND: People with advanced cancer experience psychological distress due to physical symptoms, functional decline, and a limited prognosis. Difficult thoughts, feelings, and emotions may exacerbate distress and lead to avoidance of these experiences which is sometimes referred to as experiential avoidance (EA). Advanced cancer patients may be more likely to engage in EA especially when no obvious solutions to their problems exist. This study aims to examine the terms used to describe EA, the processes that might indicate EA, associations between EA and psychological distress, and to understand why individuals might engage in EA. METHODS: A mixed-methods review. Literature search of Medline, Embase, Psych INFO, and CINAHL 1980-October 2019. INCLUSION: adults ≥ 18 years; advanced cancer not amenable to cure. EXCLUSION: no measures of EA or psychological distress. Risk of bias and study quality assessed. Evidence of statistical techniques collected. Themes coded, grouped, and developed based on meaning. RESULTS: Nineteen studies identified, 13 quantitative studies and 6 qualitative. The quantitative of which 6 compared early-stage cancers with advanced cancers and examined subscales of EA alongside mood, quality of life, and psychological distress. EA covers a range or terms of which 'avoidant coping' is the commonest. EA is manifest as cognitive, behavioural, and emotional avoidance. A thematic synthesis suggests the function of EA is to protect people from distress, and from confronting or expressing difficult emotions by avoiding communication about cancer, controlling negative information, and maintaining normality and hope and optimism. CONCLUSIONS: EA may be beneficial in the short term to alleviate distress, but in the longer term, it can impair function and limit engagement in life. Greater clinical awareness of the complexity of EA behaviours is needed. Clinicians and researchers should define EA precisely and be aware of the function it may serve in the short and longer term. Future research studies may consider using specific measures of EA as a primary outcome, to assess the impact of psychological interventions such as ACT.

Talking control sessions in people with advanced cancer: a qualitative analysis of sessions.

BACKGROUND: Talking control (TC) was developed to control for the common factors in therapy so that the specific effects of therapy can be tested. A TC was recently used in a pilot study of Acceptance and Commitment therapy for dysfunction in people with advanced cancer. This work explores the audio recording of the sessions in a TC to explore how they were utilised by people with advanced cancer. METHODS: This is a qualitative study nested in larger feasibility randomised control trial. The trial participants were recruited from three London hospices. The study examined data for 5 participants who received weekly sessions of a TC. Fifteen sessions, three per participant, were transcribed and analysed using a thematic approach. RESULTS: Individuals with advanced cancer used TC sessions as a safe place in which they could express their feelings-from smaller daily concerns to deeper-rooted difficulties. Many participants also engaged in emotional and cognitive avoidance regarding some topics, particularly those pertaining to their cancer. The TC sessions were also used as an opportunity to focus on the more positive aspects of their lives. Lastly, they served to reflect on ways to overcome difficulties. CONCLUSIONS: This study suggests the TC can have beneficial, albeit varying uses for people with advanced cancer, that may even be considered therapeutic.

Living With an Older Person Dying From Cancer, Lung Disease, or Dementia: Health Outcomes From a General Practice Cohort Study.

CONTEXT: Increasing numbers of people will die from chronic disease. Families contribute significantly to end-of-life care, but their role may not be recognized. OBJECTIVES: To 1) establish the proportion of older cohabitees identified in primary care as "carers"; 2) describe demographic and lifestyle characteristics of cohabitees of people terminally ill with cancer, dementia, and chronic obstructive pulmonary disease (COPD); 3) describe their health a year before and after bereavement; and 4) compare health outcomes between cohabitees of people dying with cancer, COPD, or dementia. METHODS: Retrospective cohort study using a U.K. primary care database (The Health Improvement Network) of 13,693 bereaved cohabitees (a proxy marker for being a carer), aged 60 years or older of people dying from cancer, COPD, or dementia. Characteristics were described one year before and after bereavement. We compared cancer, COPD, and dementia cohabitee outcomes using incidence rate ratios one year before and after bereavement and calculated mortality risk after bereavement. RESULTS: A total of 6.9% of cohabitees were recorded as carers. Health outcomes differed little between the three groups of cohabitees in the year before or after bereavement. The proportion of cohabitees with six or more consultations increased the year after bereavement (cancer cohabitees 16.0% to 18.8%, COPD cohabitees 17.8% to 20.4%, and dementia cohabitees 15.5% to 17.5%). At postbereavement (follow-up median 3 years, interquartile range 1.3-5.4), we found no mortality differences between the three groups. CONCLUSION: Recording of carers of terminally ill people was suboptimal. Cause of bereavement produced few differential effects on health outcomes or mortality.

Volunteer activity in specialist paediatric palliative care: a national survey.

OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric palliative care services. PARTICIPANTS: Volunteer managers/coordinators from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total). MAIN OUTCOMES: Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers' professional skills and volunteer activities by setting. RESULTS: A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16-19 years in 23 services and 23-35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings. CONCLUSIONS: This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers' contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers' roles.

Does involving volunteers in the provision of palliative care make a difference to patient and family wellbeing? A systematic review of quantitative and qualitative evidence.

CONTEXT: Despite the extent of volunteers' contribution to palliative care, and their role in direct patient care, there has been no systematic evaluation of the evidence-base on volunteers in relation to patient and family wellbeing. OBJECTIVE: To critically review research, on the impact of volunteers involved in the direct care of palliative patients and their families. METHODS: We searched for studies, reporting patient and family data on the impact of volunteer services in palliative care in thirteen citation databases up to May 2013. We included quantitative comparative studies. We also noted any non-comparative studies, enabling us to give a comprehensive review of the existing research. We also included qualitative studies that explored the experiences of patients and families who received volunteer support, potentially illustrating which aspects of volunteer activities patients and families value. We applied quality appraisal criteria to all studies meeting inclusion criteria. Two researchers undertook key review processes. RESULTS: We found eight studies. Only two studies were undertaken outside of North America; one in the Netherlands and the other in Uganda. All studies were in adult palliative care services. All evaluated volunteers were in home care settings, three of the studies included other settings such as hospitals and nursing homes. All of the studies fulfilled our quality appraisal criteria. Six of them were quantitative studies and two were comparative: one found that those families who experienced greater (as opposed to lesser) volunteer involvement were significantly more satisfied with care; the other found that patients survived significantly longer if they had received home visits from a volunteer. Four cross-sectional studies focused on satisfaction ratings. No study considered possible disadvantages or adverse effects of volunteer involvement. Two qualitative studies were identified; both highlighted the uniqueness of the role volunteers may fulfil in care support, from the viewpoint of patients and their families. CONCLUSIONS: Further research is needed to ensure the resource of volunteers in palliative care is used appropriately and effectively. Evaluation in well-designed comparative studies is recommended including economic analyses, as are further qualitative studies to explore the roles, benefits and possible adverse effects of volunteers. Evaluation is particularly needed outside of North America and in dedicated hospice facilities.

Narratives of continuity among older people with late stage chronic kidney disease who decline dialysis.

Chronic and life-threatening conditions are widely thought to shatter the lives of those affected. In this article, we examine the accounts of 19 older people diagnosed with late stage chronic kidney disease who declined dialysis. Accounts were collected through in-depth interview in the United Kingdom (March-November, 2010). Drawing on a phenomenological approach, we focus particularly on the embodied and lived experience of the condition and on how participants constructed treatment modalities and approached treatment choice. We look toward contemporary elaborations of the conceptual framework of biographical disruption to illustrate how participants managed to contain the intrusion of illness and maintain continuity in their lives. We argue that three interactive phenomena mitigated the potential for disruption and allowed participants to maintain continuity: (a) the framing of illness as "old age"; (b) the prior experience of serious illness; and (c) the choice of the treatment with the least potential for disruption. We conclude that a diagnosis of chronic illness in late life does not inevitably shatter lives or engender biographical disruption. Instead, people are able to construct continuity owing to complex narrative interpretations of diagnosis, sensation and treatment choices.

The experiences of close persons caring for people with chronic kidney disease stage 5 on conservative kidney management: contested discourses of ageing.

Chronic kidney disease stage 5 is a global health challenge in the context of population ageing across the world. The range of treatment options available to patients at all ages has increased and includes transplantation and dialysis. However, these options are often seen as inappropriate for older frailer patients who are now offered the option of conservative kidney management, which is presented as a non-invasive alternative to dialysis, involving symptom management and addressing psychosocial needs. In this study, we conducted qualitative interviews with 26 close persons caring for someone with chronic kidney disease stage 5 in the United Kingdom to investigate how conservative kidney management interacted with implicit ideas of ageing, in both the experience of conservative kidney management and the understanding of the prognosis and future care of the kidney disease. Our findings highlighted participant confusion about the nature of conservative kidney management, which stems from an initial lack of clarity about how conservative kidney management differed from conventional treatments for chronic kidney disease stage 5. In particular, some respondents were not aware of the implicit palliative nature of the intervention or indeed the inevitable end-of-life issues. Although these findings can be situated within the context of communication failure, we would further argue that they also bring to the surface tensions in the discourses surrounding ageing and old age, drawing on the use of a 'natural' and a 'normal' paradigm of ageing. In the context of chronic kidney disease stage 5, more patients are being dialysed at older ages, but conservative kidney management is being advanced as a better option than dialysis in terms of quality of life and experience. However, in doing so, conservative kidney management implicitly draws on a notion of older age that echoes natural ageing rather than advocate a more interventionist approach. The role of discourses of ageing in the provision of treatments for conservative kidney management has not previously been acknowledged, and this article addresses this gap.

Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies.

BACKGROUND: Volunteers make a major contribution to palliative patient care, and qualitative studies have been undertaken to explore their involvement. With the aim of making connections between existing studies to derive enhanced meanings, we undertook a systematic review of these qualitative studies including synthesising the findings. We sought to uncover how the role of volunteers with direct contact with patients in specialist palliative care is understood by volunteers, patients, their families, and staff. METHODS: We searched for relevant literature that explored the role of the volunteer including electronic citation databases and reference lists of included studies, and also undertook handsearches of selected journals to find studies which met inclusion criteria. We quality appraised included studies, and synthesised study findings using a novel synthesis method, thematic synthesis. RESULTS: We found 12 relevant studies undertaken in both inpatient and home-care settings, with volunteers, volunteer coordinators, patients and families. Studies explored the role of general volunteers as opposed to those offering any professional skills. Three theme clusters were found: the distinctness of the volunteer role, the characteristics of the role, and the volunteer experience of the role. The first answers the question, is there a separate volunteer role? We found that to some extent the role was distinctive. The volunteer may act as a mediator between the patient and the staff. However, we also found some contradictions. Volunteers may take on temporary surrogate family-type relationship roles. They may also take on some of the characteristics of a paid professional. The second cluster helps to describe the essence of the role. Here, we found that the dominant feature was that the role is social in nature. The third helps to explain aspects of the role from the point of view of volunteers themselves. It highlighted that the role is seen by volunteers as flexible, informal and sometimes peripheral. These characteristics some volunteers find stressful. CONCLUSIONS: This paper demonstrates how qualitative research can be sythnesised systematically, extending methodological techniques to help answer difficult research questions. It provides information that may help managers and service planners to support volunteers appropriately.

Volunteers in specialist palliative care: a survey of adult services in the United Kingdom.

BACKGROUND: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. OBJECTIVE: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. DESIGN: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. RESULTS: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. CONCLUSIONS: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care.

Palliative care in advanced heart failure: an international review of the perspectives of recipients and health professionals on care provision.

BACKGROUND: People with advanced heart failure (HF) have demonstrable supportive and palliative care needs. Effective service configuration and delivery should be informed by the views of those with personal experience and knowledge and should be based on available evidence. This systematic literature review aimed to collate qualitative and quantitative evidence on: 1) patients' perceived needs and experiences of care provision; and 2) the perspectives and understanding of health professionals on care delivery. METHODS AND RESULTS: A systematic literature search using Medline, Embase, Cinahl, Psycinfo, and Amed identified 48 relevant studies. Data extraction and quality evaluation for included studies were conducted by 2 independent reviewers. Findings were grouped according to themes generated from the qualitative studies. Key findings were that advanced HF patients report little discussion with health professionals about their clinical status and sense a lack of timely support to accommodate their evolving needs. Health professionals report poor multidisciplinary communication and lack confidence both in diagnosing advanced HF and in communicating a poor prognosis to those affected, affecting the provision of good-quality coordinated care. CONCLUSIONS: This review demonstrates the need for improvement in coordination of care and communication between patients, their families, and health care professionals. However, although there is broad agreement between the disciplines of cardiology and palliative care regarding the provision of therapies to reduce symptoms, improve function, and enhance quality of life, differences in views may arise, particularly regarding the maintenance of life-prolonging treatment as goals of care change.

A UK-wide postal survey to evaluate palliative care education amongst General Practice Registrars.

OBJECTIVES: To evaluate the content of General Practice Registrars' (GPRs) palliative care education in the U.K. METHODS: Postal questionnaires were sent to 492 eligible GPRs across six purposively sampled U.K. postgraduate deaneries. RESULTS: GPRs were satisfied with their course coverage on control of pain, other symptoms and communication skills, and were also moderately confident in applying the knowledge gained in these areas. They showed a high level of knowledge in the management of cancer-related pain. There was less satisfaction with the coverage given to syringe driver use (38%) and bereavement care (36%), with fewer expressing confidence in applying their knowledge to these areas. CONCLUSIONS: GPRs have mixed perceptions about their palliative care education. Future educational packages should ensure that GPRs receive planned systematic training in bereavement care and some practical experience in the use of syringe drivers. Both Postgraduate General Practice Education departments and specialist palliative care providers should explore ways of working more closely together to provide GPRs with more expertize in palliative care.

Constipation management in palliative care: a survey of practices in the United kingdom.

Fifty percent of patients admitted to hospices cite constipation as a concern. This study evaluates how constipation was managed in 11 hospices. Patients and nurses completed questionnaires at two time points: baseline and 7-10 days later. Outcomes were evaluated using a Constipation Visual Analogue Scale and a satisfaction with management of constipation questionnaire. A total of 475 patients participated; 413 completed both assessments. Forty-six percent of patients reported no constipation and 15% of patients reported severe constipation. For 75% of patients, no change in the perception of constipation was observed over the study period. Patients expressed satisfaction with their constipation management. The severity of constipation was overestimated by nurses in many patients. The findings indicate that constipation was being prevented or reasonably well managed. However, severe constipation continues to be a problem. Assessment of patients' bowel function needs to be more rigorous and those identified as severely constipated need daily monitoring.

A qualitative evaluation of the impact of palliative care day services: the experiences of patients, informal carers, day unit managers and volunteer staff.

OBJECTIVES: To explore the experiences of people involved in UK palliative care day services (PCDS) and identify the important outcomes of this service. METHODS: Focus groups were carried out separately with patients, informal carers and volunteers from four purposively selected palliative care day units and with day unit managers from 11 units. RESULTS: Patients benefited from both the support of PCDS professionals and social support of fellow PCDS patients, which contributed to a perceived improvement in their quality of life. Carers appreciated both the respite and support from PCDS, but acknowledged that they still had a poor quality of life. The challenges facing PCDS include the difficulties of discharging patients and the future role of volunteers. DISCUSSION: PCDS improved patients' perceived quality of life and future evaluations on patient outcomes could use concepts such as self-esteem, self-worth and confidence. Future service provision could explore the possibility of a mixed service using both the traditional and appointment-based system.

How many patients with haematological malignancy need the facilities offered by a district general hospital?

BACKGROUND: The objective of the study was to study the utilization of specialist clinical services for haematological malignancy in a defined patient population. Patients with haematological malignancy are mostly aged over 65 years. Demographic projections for the United Kingdom suggest that the incidence of haematological malignancy will increase by 20 per cent in the next 20 years, mostly as a result of demographic change. METHODS: A prevalence survey was carried out of out-patients with haematological malignancy resident in the New Forest area and their utilization of haematology clinical services at two sites. RESULTS: One hundred and ten patients (60 male, 50 female) were identified over three months: 87 (79 per cent) were aged over 65 years. Follow-up and therapy were carried out at a community hospital at Lymington, 19 miles from Southampton, in 83 patients (79 per cent, 45 male, 38 female, median age 74.9 years), and at one of two large hospitals in Southampton in 27 patients (21 per cent, 15 male, 12 female, median age 73.8 years). Attendance for more complex treatment at Southampton was necessary for 10 patients (9 per cent) in the Lymington group. Most interventions in both groups (356/379; 94 per cent) were basic, and were available and undertaken at either study site. Only 23/379 (6 per cent) of interventions required by the patient sample were more complex. CONCLUSIONS: Most haematological malignancies are chronic disorders with a simple clinical management plan, requiring periodic clinical monitoring. A consultant-led haematology clinic supported by access to multipurpose day treatment facilities in the community hospital allowed 75 per cent of patients to receive their care at a more geographically convenient location, important for conditions in which 79 per cent of patients are aged over 65 years, and in which this proportion will increase. Only a minority of cases require care in specialist hospital haematology units; the majority can be managed using community-based haematological follow-up care. Future studies are needed to assess cost-effectiveness and the impact on primary care of increasing the use of community-based treatment facilities.