Lost in space : service users' experience of mental illness.

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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

Achieving Behavioral Health Care Integration in Rural America

Integrating primary care services and treatment for mental health and substance use conditions not only enhances patients' access to needed care but also improves health outcomes in a cost-effective way. Yet the barriers to integrated care are substantial, and it is even more difficult to achieve in rural and frontier communities, which are home to 1 in 7 Americans.Our current work focuses on breaking down the barriers to integration in rural America, where the health care infrastructure and provider composition vary in distinct ways from urban and suburban areas. Americans in rural areas face significant shortages of psychiatrists, psychologists, clinical social workers, and other behavioral health specialists. More than 60% of nonmetropolitan counties lack a psychiatrist, and almost half of nonmetropolitan counties do not have a psychologist, compared with 27% and 19% of urban counties, respectively. These gaps in specialty care force rural residents to rely heavily on primary providers for much of their care

Using illness trajectories to inform person-centred, advance care planning

What you need to know- Most patients with progressive illness follow characteristic trajectories of decline, previously identified as rapid, intermittent, or a gradual decline from a low baseline- Multimorbidity is increasingly common and follows a distinct fourth trajectory- An understanding of the dynamic multidimensional trajectories of patients with progressive illnesses helps clinicians consider individual holistic needs and have meaningful conversations with patients and families about advance care planning- In patients with an acute deterioration in health (such as from an infection), considering the main underlying illness trajectory helps guide shared decision making about realistic current and future treatment and care option

Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study

Objectives To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD

Outcomes, experiences and palliative care in major stroke:a multicentre, mixed-method, longitudinal study

Background: Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care. Methods: From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year. Interviews were transcribed for thematic and narrative analysis. The Palliative Care Outcome Scale, EuroQol-5D-5L and Caregiver Strain Index questionnaires were completed after interviews. We also conducted a data linkage study of all patients with anterior circulation stroke admitted to the 3 services over 6 months, which included case fatality, place of death and readmissions. Results: Data linkage (n = 219) showed that 57% of patients with total anterior circulation stroke died within 6 months. The questionnaires recorded that the patients experienced immediate and persistent emotional distress and poor quality of life. We conducted 99 interviews with 34 patients and their informal and professional careers. We identified several major themes. Patients and caregivers faced death or a life not worth living. Those who survived felt grief for a former life. Professionals focused on physical rehabilitation rather than preparation for death or limited recovery. Future planning was challenging. “Palliative care” had connotations of treatment withdrawal and imminent death. Interpretation: Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal caregivers should be offered, raising the possibility of death or survival with disability. Practising the principles of palliative care is needed, but the term “palliative care” should be avoided or reframed

Effectiveness of Holistic Interventions for People with Severe Chronic Obstructive Pulmonary Disease: Systematic Review of Controlled Clinical Trials

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.To assess the effectiveness of interventions designed to deliver holistic care for people with severe COPD.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.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.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.PROSPERO (CRD42012002430)