Ethnicity and participation in cancer self-help groups.

OBJECTIVES: Investigations of the benefits of membership of a cancer self-help group have suggested that it leads to improved sense of support, increased ability to deal with life-events, and decreased anxiety, confusion, depression and helplessness. However, some evidence suggests that people from black and ethnic groups are less likely to join a cancer self-help group. The main aims of the reported study were: to explore possible reasons why people from some ethnic groups have not participated in self-help to the same extent as the rest of the community; and to identify ways in which participation of people from ethnic groups can be increased. METHODS: A qualitative interview-based study of 68 people active in self-help was carried out as a partnership between an academic institution and a community organisation. RESULTS: A thematic analysis of the interview transcripts identified three main aspects of the value of being a member of a self-help group, regardless of interviewees' self-identified ethnicity: forming a sense of togetherness, learning from one other, and developing mutuality. We identify a number of reasons that discourage or encourage people from black and ethnic groups to join cancer self-help groups. CONCLUSION: We discuss some limits, identified by interviewees, that affect development of feelings of togetherness and mutuality and we conclude with some brief recommendations about widening participation in cancer self-help.

A UK literature review of progressive long-term neurological conditions.

Progressive long-term neurological conditions are relatively rare, and policy attention has only recently been directed at community services for people with these conditions. This literature review draws together findings from 16 UK studies relating to the provision of care in the community for people with progressive long-term neurological conditions. The purpose is to identify elements of best practice which could be promoted at a national level to improve services. The findings point to the uneven coverage of services and their lack of flexibility. Multidisciplinary care delivery was considered essential and patients and carers highly valued the use of key workers. The studies also highlighted the potential for self-managed care. This evidence can be used to inform service developments for the delivery of community care for people with progressive long-term neurological conditions.

Management of pain in older people within the nursing home: a preliminary study.

The provision of continuing care for older people has largely shifted from the hospital setting to the community, and nursing homes increasingly provide support for older people, many of whom exhibit multiple pathology and complex health and social care needs. However, the quality of pain management within this setting has been identified as an issue of concern. It has been estimated that approximately two-thirds of people aged 65 years and over experience chronic pain, and that the prevalence of chronic pain in nursing home residents is between 45% and 80%. However, there exist a number of barriers to the identification and management of chronic pain among older people resident in nursing homes, including sensory impairments in older people themselves and educational deficits among professionals. Such barriers need to be overcome if pain management is to be improved. The present study involved administering a pre-piloted postal questionnaire to the managers of 121 nursing homes within a geographically defined area. Sixty-eight (56%) were completed and returned. The questionnaire broadly covered the following: prevalence of chronic pain and use of interventions; assessment and management strategies; education and training; and communication barriers. Overall, 37% of nursing home residents were identified as experiencing chronic non-malignant pain (pain lasting longer than 3 months not caused by cancer) and 2% were reported as experiencing chronic malignant pain (pain lasting for more than 3 months caused by cancer). Paracetamol was identified as the most 'often' used analgesia for both pain modalities. Sixty-nine per cent of nursing homes did not have a written policy regarding pain management and 75% did not use a standardised pain assessment tool. Forty-four per cent of nursing homes provided education or training sessions for qualified staff and 34% provided this for care assistants. Forty per cent of qualified staff and 85% of care assistants had no specialist knowledge regarding the management of pain in older people. The present study confirms the need for the development of effective pain management strategies underpinned by appropriate training and education in order to meet the particular needs of older people.

The contribution of self-help/mutual aid groups to mental well-being.

This article explores the contribution of self-help/mutual aid groups to mental well-being. Self-help/mutual aid groups are self-organising groups where people come together to address a shared a health or social issue through mutual support. They are associated with a range of health and social benefits, but remain poorly understood. This article draws on data from stage one of ESTEEM, a project which runs from 2010 to 2013. Stage one ran from 2010 to 2011 and involved participatory, qualitative research carried out in two UK sites. Twenty-one groups were purposively selected to include a range of focal issues, longevity, structures and ethnic backgrounds. Researchers carried out 21 interviews with group coordinators and twenty group discussions with members to explore the groups' purpose, nature and development. Preliminary analysis of the data suggested that mental well-being was a common theme across the groups. Subsequently the data were re-analysed to explore the groups' contribution to mental well-being using a checklist of protective factors for mental well-being as a coding framework. The findings showed that groups made a strong contribution to members' mental well-being by enhancing a sense of control, increasing resilience and facilitating participation. Group members were uplifted by exchanging emotional and practical support; they gained self-esteem, knowledge and confidence, thereby increasing their control over their situation. For some groups, socio-economic factors limited their scope and threatened their future. The article provides an evidence-base which illustrates how self-help/mutual aid groups can enhance mental well-being. If supported within a strategy for social justice, these groups enable people with varied concerns to develop a tailored response to their specific needs. The authors suggest that policy-makers engage with local people, investing in support proportionate to the needs of different populations, enabling them to develop their own self-help/mutual aid groups to enhance their sense of mental well-being.

Feedback of trial results to participants: a survey of clinicians' and patients' attitudes and experiences.

PURPOSE: There is growing interest in the provision of trial results to trial participants. However, there are a number of gaps in the research base relating to the closure of clinical trials and feedback of results to participants. METHODS: The aim of this research was to explore the practice of feeding back trial results to trial participants and to identify best practice in this area. Postal questionnaires were sent to members of the UK National Cancer Research Institute Clinical Studies Groups (NCRI CSG) and to patients over the age of 18 years who completed trial treatment (located in one Cancer Network) during a 16-month period (April 07-July 08). RESULTS: 145 NCRI CSG member surveys and 81 patient questionnaires were returned. The vast majority of all respondents supported the idea of offering results to trial participants. However, NCRI members and trial participants differed in their opinions about the timing and method for the provision of results. CONCLUSION: The results provide an insight into the views of these groups in relation to desire for results and practical aspects of results feedback which should inform further investigations into trial management and the practice of feedback of trial results.

Patients referred to a pain management clinic: beliefs, expectations and priorities.

AIM: This paper is a report of a study to explore patients' pain-beliefs and emotions at the point of referral to a pain clinic, their expectations of the clinic and their priorities for improvement in aspects of their lives affected by pain. BACKGROUND: Chronic pain is a common experience and, although the percentage of people with pain referred to pain clinics is increasing, they often experience complex journeys through the healthcare system. Patients' beliefs about pain have been shown to influence their experience of pain and treatment outcomes, with a focus on the organic cause of pain reported. METHODS: Three focus groups were convened with 18 participants. Ten statements about pain were distributed to each participant and ranked according to their priorities. The data were collected in 2002-2003. FINDINGS: The participants' beliefs were dominated by the search for a firm diagnosis and cure. Participants held three main beliefs; that the cause of the pain must be established; that other people do not believe in the pain of a person without a firm diagnosis; and that painkillers are a way of 'fobbing you off'. Participants had little knowledge and few concrete expectations of the pain clinic. Their main priorities for improvement were 'less pain', 'some pain free times', and being able to do more 'everyday things'. CONCLUSION: Staff delivering pain management services must understand patients' beliefs and expectations and explain their own perspectives in order to provide a sound basis for working together.

Closure for patients at the end of a cancer clinical trial: literature review.

AIM: This paper is a report of a literature review to explore theories of psychological closure in order to understand the outcomes of a trial in which nurses attempted to facilitate psychological closure for their patients with cancer. BACKGROUND: Patients' accounts have highlighted a feeling of abandonment and a need for support after a period of treatment for cancer but this is rarely addressed in the nursing literature or in practice. METHODS: The British Nursing Index, the CINAHL, Ovid Medline, PsychInfo and EMBASE databases were searched without date limits using the keywords 'closure', 'ending', 'finishing', 'treatment', 'cancer care', 'therapeutic relationships' and 'transitions'. The search took place concurrently with the implementation of a randomized controlled trial from 2001 to 2005 in which nurses attempted to facilitate closure for patients at the end of a cancer chemotherapy trial. RESULTS: Literature on the concept of 'rites of passage' enabled us to view nurses as supporting patients' transition from one life-stage to another. Literature on debriefing deepened our understanding of patients' anxieties and needs. Our review also drew attention to power imbalances in the ending of nurse-patient or doctor-patient relationships, and highlighted the importance of good endings and the need to mark endings formally. CONCLUSION: Achieving closure is an important element in promoting patient well-being when undergoing treatment for cancer. Nurses and other healthcare staff can facilitate this with simple interventions such feedback and discussion at the end of a period of active treatment.

Какова эффективность оказания помощи и ухода за пожилыми людьми на дому?

Данный доклад является сводным докладом Сети фактических данных по вопросам здоровья (СФДЗ) по вопросам эффективности патронажных визитов и ухода за пожилыми людьми на дому. Подавляющее большинство пожилых людей предпочитают оставаться в привычных домашних условиях, а получение помощи в специализированных учреждениях требует больших затрат. Это приводит к необходимости создания социальных и экономических условий, способствующих предупреждению заболеваний и инвалидности среди пожилых людей, позволяя им оставаться в собственных домах так долго, насколько это возможно. Достижению этой цели могут способствовать такие меры, как патронажные визиты и уход за пожилыми людьми на дому. Фактические данные указывают на то, что патронажные визиты могут способствовать снижению показателей смертности и сокращению доли лиц, поступающих в дома престарелых, среди некоторых групп пожилых людей. Характерными особенностями эффективных программ патронажной помощи на дому являются такие меры, как проведение комплексного обследования, большое число патронажных визитов в целях последующего наблюдения и целенаправленная работа с группами лиц с более низким риском смерти. Сеть фактических данных по вопросам здоровья (СФДЗ), работа которой была инициирована и координируется Eвропейским региональным бюро ВОЗ, представляет собой информационную службу для лиц, принимающих решения в области общественного здравоохранения и медицинской помощи в Европейском регионе ВОЗ. СФДЗ может также быть полезна и другим заинтересованным сторонам.

What is the effectiveness of home visiting or home-based support for older people?

This is a Health Evidence Network (HEN) synthesis report on the evidence of the effectiveness of home visiting or home-based support for older people. The vast majority of older people wish to remain living in their own homes. Furthermore, institutional care is costly. Consequently there are social and economic imperatives to prevent ill health and disability in older people and enable them to remain in their own homes as long as possible. Home visiting and home-based support are interventions that may be used to these ends. Evidence shows that home visits can reduce mortality and nursing home admissions in some groups of older people. Characteristics of effective home-visiting programmes include multidimensional assessment, many follow-up visits and targeting people at lower risk of death. HEN, initiated and coordinated by the WHO Regional Office for Europe, is an information service for public health and health care decision-makers in the WHO European Region. Other interested parties might also benefit from HEN.