Exploring the concept of need in people with very severe chronic obstructive pulmonary disease: a qualitative study.

BACKGROUND: Despite apparent unmet needs, people with chronic obstructive pulmonary disease (COPD) rarely ask for help. We explored the concept of need from the perspective of patients, their family carers and professionals. METHODS: We recruited inpatients at two National Health Service (NHS) Lothian hospitals to a structured, holistic review of care needs delivered at home by a respiratory nurse 4 weeks postdischarge. Using semistructured interviews and group discussions, review notes and field-notes we explored the views of patients, carers and professionals on perceptions of need and the actions requested. Data were analysed thematically using Bradshaw's classification of need. RESULTS: 14 patients, 3 carers, 28 professionals provided 36 interviews and 2 discussion groups. Few needs were identified by our intervention and few actions planned. Professionals identified 'normative' needs some of which had been addressed during routine discharge planning. Other needs (physical/psychological limitations, social/financial concerns, existential issues) were 'felt' by patients and carers but articulated in response to the researcher's questions rather than actively 'expressed'. Patients often did not wish any action to address the problems, preferring care from family members rather than formal agencies. Many spoke of the over-arching importance of retaining a sense of independence and autonomy, considering themselves as ageing rather than ill. CONCLUSIONS: In contrast to professionally-defined 'normative' needs, patients rarely perceived themselves as needy, accepting their 'felt' needs as the result of a disability to which they had now adapted. Sensitive approaches that foster independence may enable patients to 'express' needs that are amenable to help without disturbing the adaptive equilibrium they have achieved. TRIAL REGISTRATION NUMBER: NCT01650480.

HELPing older people with very severe chronic obstructive pulmonary disease (HELP-COPD): mixed-method feasibility pilot randomised controlled trial of a novel intervention.

BACKGROUND: Extending palliative care to those with advanced non-malignant disease is advocated, but the implications in specific conditions are poorly understood. AIMS: We piloted a novel nurse-led intervention, HELPing older people with very severe chronic obstructive pulmonary disease (HELP-COPD), undertaken 4 weeks after discharge from hospital, which sought to identify and address the holistic care needs of people with severe COPD. METHODS: This 6-month mixed-method feasibility pilot trial randomised (ratio 3:1) patients to HELP-COPD or usual care. We assessed the feasibility of using validated questionnaires as outcome measures and analysed the needs/actions recorded in the HELP-COPD records. Semi-structured interviews with a purposive sample of patients, carers and professionals explored the perceptions of HELP-COPD. Verbatim transcriptions and field notes were analysed using Normalisation Process Theory as a framework. RESULTS: We randomised 32 patients (24 to HELP-COPD); 19 completed the study (death=3, ill-health=4, declined=6). The HELP-COPD record noted a mean of 1.6 actions/assessment, mostly provision of information or self-help actions: only five referrals were made. Most patients were positive about HELP-COPD, discussing their concerns and coping strategies in all domains, but the questionnaires were burdensome for some patients. Adaptation to their slowly progressive disability and a strong preference to rely on family support was reflected in limited acceptance of formal services. Professionals perceived HELP-COPD as addressing an important aspect of care, although timing overlapped with discharge planning. CONCLUSIONS: The HELP-COPD intervention was well received by patients and the concept resonated with professionals, although delivery post discharge overlapped with existing services. Integration of brief holistic care assessments in the routine primary care management of COPD may be more appropriate.

The impact of advanced heart failure on social, psychological and existential aspects and personhood.

BACKGROUND: Heart failure is a common cause of death and causes significant morbidity in its advanced stage. As the illness progresses, lack of physical health may overshadow psychological, social and existential distress. AIMS: To explore the impact of advanced heart failure on other aspects of the patients' lives. METHODS: We undertook a secondary analysis of interview data generated for a qualitative longitudinal study looking at the experiences of patients with advanced heart failure, and their family and professional carers. A sub set of patient, family and professional carer interview transcripts was selected for thematic analysis. The sample was chosen to reflect a range of age, gender and social situations. RESULTS: Eighteen transcripts from five cases were examined. Three key themes were identified: 1) social isolation; 2) psychological issues and coping strategies; and 3) existential concerns. CONCLUSIONS: Psychosocial and existential issues are important aspects of the lives of patients suffering from heart failure. Holistic management should encompass an awareness of exploration and support for these dimensions.

Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study.

BACKGROUND: Coordination of care for individuals with advanced progressive conditions is frequently poor. AIM: To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life. DESIGN AND SETTING: A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service. METHOD: Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed. RESULTS: Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators. CONCLUSION: Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.

Proactive cancer care in primary care: a mixed-methods study.

BACKGROUND: Current models of post-treatment cancer care are based on traditional practices and clinician preference rather than evidence of benefit. OBJECTIVES: To assess the feasibility of using a structured template to provide holistic follow-up of patients in primary care from cancer diagnosis onwards. METHODS: A two-phase mixed methods action research project. An electronic cancer ongoing review document (CORD) was first developed with patients and general practitioners, and used with patients with a new diagnosis of cancer. This was evaluated through documentary analysis of the CORDs, qualitative interviews with patients, family carers and health professionals and record reviews. RESULTS: The records of 107 patients from 13 primary care teams were examined and 45 interviews conducted. The document was started in 54% of people with newly diagnosed cancer, and prompted clear documentation of multidimension needs and understanding. General practitioners found using the document helped to structure consultations and cover psychosocial areas, but they reported it needed to be better integrated in their medical records with computerized prompts in place. Few clinicians discussed the review openly with patients, and the template was often completed afterwards. CONCLUSIONS: Anticipatory cancer care from diagnosis to cure or death, 'in primary care', is feasible in the U.K. and acceptable to patients, although there are barriers. The process promoted continuity of care and holism. A reliable system for proactive cancer care in general practice supported by hospital specialists may allow more survivorship care to be delivered in primary care, as in other long-term conditions.

Effectiveness of holistic interventions for people with severe chronic obstructive pulmonary disease: systematic review of controlled clinical trials.

BACKGROUND: Despite a well-recognised burden of disabling physical symptoms compounded by co-morbidities, psychological distress and social isolation, the needs of people with severe chronic obstructive pulmonary disease (COPD) are typically poorly addressed. AIM: To assess the effectiveness of interventions designed to deliver holistic care for people with severe COPD. METHODS: We searched 11 biomedical databases, three trial repositories (January 1990-March 2012; no language restrictions) and contacted international experts to locate published, unpublished and in-progress randomised controlled trials (RCTs), quasi-RCTs and controlled clinical trials (CCTs) that investigated holistic interventions to support patients with severe COPD in any healthcare context. The primary outcome was health-related quality of life (HRQoL). Quality assessment and data extraction followed Cochrane Collaboration methodology. We used a piloted data extraction sheet and undertook narrative synthesis. RESULTS: From 2,866 potentially relevant papers, we identified three trials: two RCTs (from United States and Australia), and one CCT (from Thailand): total 216 patients. Risk of bias was assessed as moderate in two studies and high in the third. All the interventions were led by nurses acting in a co-ordinating role (e.g. facilitating community support in Thailand, providing case-management in the USA, or co-ordinating inpatient care in Australia). HRQoL improved significantly in the Thai CCT compared to the (very limited) usual care (p<0.001), in two sub-domains in the American trial, but showed no significant changes in the Australian trial. Exercise tolerance, dyspnoea, and satisfaction with care also improved in the Thai trial. CONCLUSIONS: Some 15 years after reports first highlighted the unmet needs of people with severe COPD, we have been unable to find robust trial evidence about interventions that can address those needs. There is an urgent need to develop and evaluate holistic care interventions designed improve HRQoL for people with severe COPD. SYSTEMATIC REVIEW REGISTRATION: PROSPERO (CRD42012002430).

Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews.

OBJECTIVE: To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death. DESIGN: Secondary analysis of serial qualitative interviews carried out every three months for up to a year or to bereavement. SETTING: South east Scotland. PARTICIPANTS: 19 patients with lung cancer and their 19 family carers, totalling 88 interviews (42 with patients and 46 with carers). RESULTS: Carers followed clear patterns of social, psychological, and spiritual wellbeing and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted on their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the "Why us?" response, witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage. CONCLUSIONS: Family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case.

Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals.

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n =162); followed by four focus groups involving patients, carers and key professionals (n =32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals.

The psychosocial effects of exercise and relaxation classes for persons surviving a stroke.

BACKGROUND: This study was set up to explore unexpected findings emergent from a randomized controlled trial of exercise versus relaxation post-stroke. PURPOSE: Stroke survivors' experiences of taking part in exercise and relaxation classes were explored. METHODS: In-depth, semi-structured interviews carried out with 14 community-dwelling stroke survivors in Edinburgh. The informants previously participated in a randomized exploratory trial of exercise versus relaxation. FINDINGS: The classes motivated participants to take part in other purposeful activities, to continue to practice what they had learned, and/or to attend another class in the community. Class participation also led to an improvement of self-perceived quality of life, specifically, improved confidence, physical ability, psychosocial functioning, and a sense of empowerment. IMPLICATIONS: Taking part in either exercise or relaxation classes after stroke can contribute to improved self-perceived quality of life, improved psychosocial functioning, and improved motivation to take an active role in the recovery process.

Patterns of social, psychological, and spiritual decline toward the end of life in lung cancer and heart failure.

Typical trajectories of physical decline have been described for people with end-stage disease. It is possible that social, psychological, and spiritual levels of distress may also follow characteristic patterns. We sought to identify and compare changes in the psychological, social, and spiritual needs of people with end-stage disease during their last year of life by synthesizing data from two longitudinal, qualitative, in-depth interview studies investigating the experiences and needs of people with advanced illnesses. The subjects were 48 patients with advanced lung cancer (n=24) and heart failure (n=24) who gave a total of 112 in-depth interviews. Data were analyzed within individual case studies and then cross-sectionally according to the stage of physical illness. Characteristic social, psychological, and spiritual end-of-life trajectories were discernible. In lung cancer, the social trajectory mirrored physical decline, while psychological and spiritual well-being decreased together at four key transitions: diagnosis, discharge after treatment, disease progression, and the terminal stage. In advanced heart failure, social and psychological decline both tended to track the physical decline, while spiritual distress exhibited background fluctuations. Holistic end-of-life care needs to encompass all these dimensions. An appreciation of common patterns of social, psychological, and spiritual well-being may assist clinicians as they discuss the likely course of events with patients and carers and try to minimize distress as the disease progresses.

How do people with cancer wish to be cared for in primary care? Serial discussion groups of patients and carers.

BACKGROUND: In most economically developed countries, patients, their informal and professional carers and policy makers are calling for more care in the community. OBJECTIVES: To involve patients with cancer, and their carers, in designing a framework for providing effective cancer care in primary care. METHODS: Two discussion groups comprising 18 people with current cancer and carers met monthly over a year in the south of Scotland. RESULTS: Patients with cancer and their carers identified five key times in the cancer journey as being especially significant from their perspective: around diagnosis, during treatment, after discharge, at recurrence and the final weeks. At each key time, there were five major issues of concern: information, communication, equity, a holistic approach and patient-centred care. Using these, the group members developed a checklist of recommended interventions for each stage in the illness trajectory and suggested how they might be implemented in primary care. Proactive and ongoing contact, if wished by the patient, was considered the central plank of cancer care in the community. CONCLUSIONS: Patients with cancer and their carers believe that there is an important and unique role for primary care in offering continuity of care and information that is patient-centred and holistic, throughout the cancer trajectory, from first presentation. This study successfully brought patient, carer and professional perspectives to the development of a care framework for primary care.

Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers.

BACKGROUND: We set out to explore whether patients with life-threatening illnesses and their informal carers consider they experience significant spiritual needs, in the context of their overall needs, how spiritual concerns might vary by illness group and over the course of the illness, and how patients and their carers think they might be supported in addressing spiritual issues. METHODS: Three-monthly qualitative interviews for up to one year with 20 patients with inoperable lung cancer and 20 patients with end-stage heart failure and their informal carers. RESULTS: We conducted 149 in-depth interviews. Spiritual concerns were important for many patients in both groups, both early and later in the illness progression. Whether or not patients and carers held religious beliefs, they expressed needs for love, meaning, purpose and sometimes transcendence. The different experiences of lung cancer and heart failure raised contrasting patterns of spiritual issues and needs. Carers voiced their own spiritual needs. Patients and carers were generally reluctant to raise spiritual issues, but many, in the context of a developing relationship with the researcher, were able to talk about such needs. CONCLUSIONS: Spiritual issues were significant for many patients in their last year of life and their carers. Many health professionals lack the necessary time and skills to uncover and address such issues. Creating the opportunity for patients and carers to discuss spiritual issues, if they wish, requires highly developed communication skills and adequate time.

Spiritual issues and needs: perspectives from patients with advanced cancer and nonmalignant disease. A qualitative study.

OBJECTIVE: Health care professionals and policy makers acknowledge that spiritual needs are important for many patients with life-limiting illnesses. We asked such patients to describe their spiritual needs and how these needs may impinge on their physical, psychological, and social well-being. Patients were also encouraged to explain in what ways their spiritual needs, if they had any, could be addressed. METHODS: We conducted two qualitative interviews, 3 months apart, with 20 patients in their last year of life: 13 patients with advanced cancer and 7 with advanced nonmalignant illness. We also interviewed each patient's general practitioner. Sixty-six interviews were tape-recorded, transcribed, and analyzed. RESULTS: Patients' spiritual needs centered around their loss of roles and self-identity and their fear of dying. Many sought to make sense of life in relation to a nonvisible or sacred world. They associated anxiety, sleeplessness, and despair with such issues, which at times resulted in them seeking support from health professionals. Patients were best able to engage their personal resources to meet these needs when affirmed and valued by health professionals. SIGNIFICANCE OF RESULTS: Enabling patients to deal with their spiritual needs through affirmative relationships with health professionals may improve quality of life and reduce use of health resources. Further research to explore the relationship between spiritual distress and health service utilization is indicated.

Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers.

OBJECTIVE: To describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country. DESIGN: Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews. SETTINGS: Lothian region, Scotland, and Meru District, Kenya. PARTICIPANTS: Scotland: 20 patients with inoperable lung cancer and their carers. Kenya: 24 patients with common advanced cancers and their main informal carers. MAIN OUTCOME MEASURES: Descriptions of experiences, needs, and available services. RESULTS: 67 interviews were conducted in Scotland and 46 in Kenya. The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. In Scotland, free health and social services (including financial assistance) were available, but sometimes underused. In Kenya, analgesia, essential equipment, suitable food, and assistance in care were often inaccessible and unaffordable, resulting in considerable unmet physical needs. Kenyan patients thought that their psychological, social, and spiritual needs were met by their families, local community, and religious groups. Some Scottish patients thought that such non-physical needs went unmet. CONCLUSIONS: In patients living in developed and developing countries there are differences not only in resources available for patients dying from cancer but also in their lived experience of illness. The expression of needs and how they are met in different cultural contexts can inform local assessment of needs and provide insights for initiatives in holistic cancer care.

General practitioners and their possible role in providing spiritual care: a qualitative study.

We interviewed the general practitioners (GPs) of 40 patients with life-threatening illnesses over the course of the last year of life. We asked them to identify their patients' holistic needs, and to discuss whether they considered that they had a role in providing 'spiritual care'. The GPs varied greatly in their understanding of their patients' experiences and needs. Most said that they had a role in providing spiritual care, but hesitated to raise spiritual issues with patients, mentioning lack of time, a feeling that they should wait for a cue, or being unprepared or unskilled.