Policy on care in the community was founded on the premise that the care of frail elderly people with disabilities would be a joint responsibility for health and social care professionals, and family carers, supported by people within their social networks. The policy assumes that such social networks are common features of all communities in contemporary Britain, containing a reserve of people who can be called upon to provide support to carers. The present paper draws on material gathered for a qualitative study of the experiences carers in South Asian communities to examine the quality and quantity of informal support that was available in different types of households. Male and female carers were selected from the Punjabi Sikh, Gujarati Hindu, and Bangladeshi and Pakistani communities. A total of 105 carers participated in the project. Participants were caring for people in all age groups with physical and/or mental distress, and in some cases, with multiple and complex impairments. The analysis of carers' accounts suggested that, for a variety of reasons, the main carer, irrespective of gender, had limited support both in nuclear and extended households. In addition, societal attitudes towards disability and the fear of obligation prevented the seeking and accepting of help from wider social networks. The paper concludes that the evidence does not support the assumption about extended families, and their willingness and ability to support carers. Many issues highlighted in this paper have far-reaching implications for policy makers in many countries in the West where South Asian people have made their homes.

Despite considerable recent development of different forms of care for older patients, evidence about effectiveness and costs is weak. However, evidence is also weak for longer-standing care models. A substantial service evaluation agenda emerges from this review. This study also raises questions about the usefulness of systematic review techniques in the area of service delivery and organisation.

et al. A systematic review of the costs and effectiveness of different models of paediatric home care. Health Technol Assess 2002;6(35). Health Technology Assessment is indexed in Index Medicus/MEDLINE and Excerpta Medica/ EMBASE. Copies of the Executive Summaries are available from the NCCHTA website (see opposite). NHS R&D HTA Programme T he NHS R&D Health Technology Assessment (HTA) Programme was set up in 1993 to ensure that high-quality research information on the costs, effectiveness and broader impact of health technologies is produced in the most efficient way for those who use, manage and provide care in the NHS. Initially, six HTA panels (pharmaceuticals, acute sector, primary and community care, diagnostics and imaging, population screening, methodology) helped to set the research priorities for the HTA Programme. However, during the past few years there have been a number of changes in and around NHS R&D, such as the establishment of the National Institute for Clinical Excellence (NICE) and the creation of three new research programmes: Service Delivery and Organisation (SDO); New and Emerging Applications of Technology (NEAT); and the Methodology Programme. This has meant that the HTA panels can now focus more explicitly on health technologies ('health technologies' are broadly defined to include all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care) rather than settings of care. Therefore the panel structure has been redefined and replaced by three new panels: Pharmaceuticals; Therapeutic Procedures (including devices and operations); and Diagnostic Technologies and Screening. The HTA Programme continues to commission both primary and secondary research. The HTA Commissioning Board, supported by the National Coordinating Centre for Health Technology Assessment (NCCHTA), will consider and advise the Programme Director on the best research projects to pursue in order to address the research priorities identified by the three HTA panels. The research reported in this monograph was funded as project number 98/05/03. The views expressed in this publication are those of the authors and not necessarily those of the HTA Programme or the Department of Health. The editors wish to emphasise that funding and publication of this research by the NHS should not be taken as implicit support for any recommendations made by the authors. Criteria for inclusion in the HTA monograph series Reports are published in the HTA monograph series if (1) they have resulted from work commissioned for the HTA Programme, and (2) they are of a sufficiently high scientific quality as assessed by the referees and editors. Reviews in Health Technology Assessment are termed 'systematic' when the account of the search, appraisal and synthesis methods (to minimise biases and random errors) would, in theory, permit the replication of the review by others.

No abstract

Despite recent expansion, research evidence from randomized trials for paediatric home care is slight, and methods used are weak in places. Paediatric home care poses practical and ethical questions that cannot be addressed by RCTs.

We have studied stoma care nurses' experience with Asian patients having a stoma. The general public's attitudes to abdominal surgery in general were assessed in a survey of employees in Leicester. Many stoma care nurses are aware of the needs of Asian patients, especially with regards to ethnic dress, but only half of the ostomists who wanted to see a stoma care nurse or fellow ostomist were able to do so (chi 2 = 4.5, p less than 0.03). All ostomists considered counselling on education, employment and marriage inadequate. There is a high level of anxiety about stomas and these anxieties are surprisingly similar for all ethnic groups.

Three hundred and eighty-two patients with known inflammatory bowel disease (IBD) (190 European and 192 Asians) and 190 with coeliac disease were sent a previously validated questionnaire to investigate patients' use of alternative medicine and their views on its effectiveness. Details sought included whether they have ever consulted an alternative practitioner, whether they had followed a course of treatment and its clinical effects. Information about where patients had heard about such alternative practitioners and whether they were told to discontinue their current allopathic medication was sought. Results were analysed after three consecutive mailings, including one in Gujurati to Asian patients. A randomly selected group was re-interviewed four months later. To validate the study alternative medicine practitioners were also interviewed to investigate what percentage of their attendees have IBD and how many of those clients were Asians. One hundred and fifty-eight questionnaires were returned from European patients with IBD (response rate = 83%), 145 from patients with coeliac disease (response rate = 76%) but only 81 Asian patients with IBD (response rate = 42%). Forty-seven European and Asian patients with inflammatory bowel disease sought advice or treatment from an alternative practitioner, compared with only 11 with coeliac disease (chi(2) = 11.64, df = 12, P < 0.003). There was no significant difference in consultation rates between Asian and European patients with IBD (Yates corrected chi(2) = 0.78, ns). The most common practitioners consulted by all groups were homeopaths (n = 23) and herbalists (n = 27) but 20 patients consulted more than one practitioner at a time. Patients with coeliac disease and European patients with IBD had consulted osteopaths (n = 6) and reflexologists (n = 7). Ten patients with IBD had also attended a spiritualist and five Asian patients a hakim. Common sources of information about alternative remedies included friends and relatives (n = 13), the media (n = 11), word of mouth (n = 11) and family practitioners (n = 6). Most patients were advised to continue their current medications, although two had been told to stop and 10 advised to reduce the dose of their allopathic medications. Twenty alternative medicine practitioners stated that overall between 2-5% of their attendees have IBD with 10% of those clients being Asian. Asians preferred to consult Asian practitioners rather than European practitioners. There was no clear consensus as to whether complementary therapies were felt beneficial, although many patients with IBD believed them to be helpful.

An invitation to attend the inaugural meeting of a self-help group and a questionnaire were sent to 2084 patients with inflammatory bowel disease (IBD). Twelve months later 180 patients who had joined the group (n = 90) and a similar number who had not, were sent a second questionnaire seeking why they had or had not, and what functions the group had managed to fulfill. 254 (13%) responded and 138 (7%) joined. Patients with Crohn's disease chi 2 = 5.43, P = 0.02) and women (chi 2 = 3.80, P < 0.05) were more likely to join. These differences were not seen amongst the Asians who responded to the questionnaire (chi 2 = 0.01, ns) who were much less likely to respond (chi 2 = 15.1, P < 0.0001). Responders wanted the group to provide an information service (85%) to give an opportunity to discuss problems with other patients (77%) and to promote the needs of people with IBD to the local community. 88% (n = 159) responded to the second questionnaire, including 83 from joiners and 76 from non-joiners. Forty-seven (57% of joiners) had attended meetings. Answers indicated the group provided useful general information (99%), mutual support (66%), information on medical research (70%) and an opportunity to meet (60%). Amongst non-joiners, 81% (n = 62) thought such a group might be useful. Reasons for not joining included: too busy (40%), too far away (23%), managing without support (28%) and reluctance to broadcast their illness (20%).