Imparting carrier status results detected by universal newborn screening for sickle cell and cystic fibrosis in England: a qualitative study of current practice and policy challenges.

BACKGROUND: Universal newborn screening for early detection of children affected by sickle cell disorders and cystic fibrosis is currently being implemented across England. Parents of infants identified as carriers of these disorders must also be informed of their baby's result. However there is a lack of evidence for most effective practice internationally when doing so. This study describes current or proposed models for imparting this information in practice and explores associated challenges for policy. METHODS: Thematic analysis of semi-structured interviews with Child Health Coordinators from all English Health Regions. RESULTS: Diverse methods for imparting carrier results, both within and between regions, and within and between conditions, were being implemented or planned. Models ranged from result by letter to in-person communication during a home visit. Non-specialists were considered the best placed professionals to give results and a similar approach for both conditions was emphasised. While national guidance has influenced choice of models, other factors contributed such as existing service structures and lack of funding. Challenges included uncertainty about guidance specifying face to face notification; how best to balance allaying parental anxiety by using familiar non-specialist health professionals with concerns about practitioner competence; and extent of information parents should be given. Inadequate consideration of resource and service workload was seen as the main policy obstacle. Clarification of existing guidance; more specific protocols to ensure consistent countrywide practice; integration of the two programmes; and 'normalising' carrier status were suggested as improvements. CONCLUSION: Differing models for communicating carrier results raise concerns about equity and clinical governance. However, this variation provides opportunity for evaluation. Timely and more detailed guidance on protocols with clarification of existing recommendations is needed.

The organisation, form and function of intermediate care services and systems in England: results from a national survey.

This paper reports the results of a postal survey of intermediate care coordinators (ICCs) on the organisation and delivery of intermediate care services for older people in England, conducted between November 2003 and May 2004. Questionnaires, which covered a range of issues with a variety of quantitative, tick-box and open-ended questions, were returned by 106 respondents, representing just over 35% of primary care trusts (PCTs). The authors discuss the role of ICCs, the integration of local systems of intermediate care provision, and the form, function and model of delivery of services described by respondents. Using descriptive and statistical analysis of the responses, they highlight in particular the relationship between provision of admission avoidance and supported discharge, the availability of 24-hour care, and the locations in which care is provided, and relate their findings to the emerging evidence base for intermediate care, guidance on implementation from central government, and debate in the literature. Whilst the expansion and integration of intermediate care appear to be continuing apace, much provision seems concentrated in supported discharge services rather than acute admission avoidance, and particularly in residential forms of post-acute intermediate care. Supported discharge services tend to be found in residential settings, while admission avoidance provision tends to be non-residential in nature. Twenty-four-hour care in non-residential settings is not available in several responding PCTs. These findings raise questions about the relationship between the implementation of intermediate care, and the evidence for and aims of the policy as part of National Health Service modernisation, and the extent to which intermediate care represents a genuinely novel approach to the care and rehabilitation of older people.

Place, policy and practitioners: on rehabilitation, independence and the therapeutic landscape in the changing geography of care provision to older people in the UK.

A growing body of literature in geography and other social sciences considers the role of place in the provision of healthcare with particular interests emerging around the role of the psychological, social and cultural aspects of place in care provision. As healthcare stretches increasingly beyond the traditional four walls of the hospital, so questions of the role of place in practices of care become ever more pertinent. In this paper, we examine the relationship between place and practice in the care and rehabilitation of older people across a range of settings, using qualitative material obtained from interviews and focus groups with nursing, care and rehabilitation staff working in hospitals, clients' homes and other sites in England. By analysing their testimony on the characteristics of different settings, the aspects of place which facilitate or inhibit rehabilitation and the ways in which place mediates and is mediated by social interaction, we consider how various dimensions of place relate to the power-inscribed relationships between service users, informal carers and professionals as they negotiate the goals of the rehabilitation process. We seek to demonstrate how the physical, psychological and social meanings of place and the social processes engendered by the rehabilitation encounter interact to produce landscapes that are more or less therapeutic, considering in particular the structuring role of state policy and formal healthcare provision in this dynamic.

Patient and carer satisfaction with 'hospital at home': quantitative and qualitative results from a randomised controlled trial.

BACKGROUND: 'Hospital At Home' schemes are set to increase in the United Kingdom (UK) in response to the NHS Plan. To date, little detailed work has been done on the acceptability of these schemes to patients and their carers. AIM: To compare Hospital at Home patient and carer satisfaction with hospital care. DESIGN OF STUDY: Pragmatic randomised controlled trial. SETTING: Consecutive patients assessed as suitablefor the Leicester Hospital at Home scheme were randomised to Hospital at Home or one of three acute hospitals in the city. METHOD: Patient satisfaction was assessed two weeks after randomisation, or at discharge if later using a six-item questionnaire. Patients' and carers' views of the services were assessed by semistructured interviews. RESULTS: One hundred and two patients were randomised to Hospital at Home and 97 to hospital. Forty-eight (47%) patients in the Hospital at Home arm and 35 (36%) in the hospital arm completed the satisfaction questionnaire, representing 96% and 85% of those eligible, respectively. Total scores were significantly higher in the Hospital at Home (median = 15) than in the hospital group (median = 12). (P<0.001, Mann-Whitney U-test.) Responses to all six questions favoured Hospital at Home, with all but one of these differences being statistically significant. In the Hospital at Homegroup, 24 patients and 18 of their carers were interviewed; in the hospital group 18 patients and seven of their carers were interviewed. Themes emerging from these interviews were that patients appreciated the more personal care and better communication offered by Hospital at Home and placed great value on staying at home, which was seen to be therapeutic. Patients largely felt safe in Hospital at Home, although some would have felt safer in hospital. Some patients and carers felt that better medical care would have been provided in hospital. Carers felt that the workload imposed by Hospital at Home was no greater than by hospital admission and that the relief from care duties at home would be counterbalanced by the added strain of hospital visiting. CONCLUSIONS: Patient satisfaction was greater with Hospital at Home than with hospital. Reasons included a more personal style of care and a feeling that staying at home was therapeutic. Carers did not feel that Hospital at Home imposed an extra workload.

Performance of hospital-at-home after a randomised controlled trial.

OBJECTIVE: To compare the performance of an admission-avoidance hospital-at-home scheme one year after the end of a randomised trial with its performance during the trial. METHODS: Observational study of patients admitted to the scheme during a period of 12-19 months after the trial ended. In addition to routine data from service records, patients were interviewed at three days, two weeks and three months after admission, using the same instruments as used in the trial. RESULTS: All 78 patients admitted to hospital-at-home during the follow-up period were included, and compared with the 95 patients admitted during the trial. The referral rate to hospital-at-home was the same (11 per month) as during the trial. During the trial, patients were randomised to hospital-at-home or hospital, meaning that hospital-at-home worked at about double the trial volume in the post-trial period. Baseline characteristics showed no statistically significant differences except that post-trial patients were less cognitively impaired. There were no statistically significant differences between the groups in survival at two weeks and three months, or in Barthel index, Sickness Impact Profile 68 and Philadelphia Geriatric Morale Scale. Length of stay in hospital-at-home was significantly shorter in the post-trial period (median of five days versus seven, P < 0.001), and more patients received a visit from their general practitioner during the period of admission (54% versus 38%, P = 0.04); otherwise there were no significant differences in process measures. CONCLUSION: Apart from working at higher volume and achieving a shorter length of stay, performance of the hospital-at-home scheme a year after the trial ended was little different from that reported during the trial. This is an example of an observational study providing evidence to support the generalisability of trial findings.

Diversity in intermediate care.

This paper discusses the evolution of intermediate care (IC) and presents interim observations from a survey of providers in England being conducted as part of a national evaluation. Telephone interviews covering various issues concerning the level of provision and style of delivery have been conducted with 70 services to date. Data from these are used to discuss the progress, range and nature of IC in relation to clinician viewpoints and academic and official literature on the subject. IC 'on the ground' is a multiplicitous entity, with provision apparently evolving in accordance with the particularities of local need. While protocols for medical involvement in IC generally appear to be well established, there are some tensions concerning integration of services in a locality, care management processes and questions of flexibility and inclusiveness in relation to eligibility criteria.

Father-daughter sexual abuse: an emerging perspective.

This study probes the antecedents of father-daughter sexual abuse, utilizing perspectives of parent-child bonding and an emerging theory of incest avoidance. Data were obtained from a sample of abusive fathers and a comparison group who were not known abusers. Fathers' involvement in the early socialization of their daughters constituted a major differentiating variable.

Palliative care services for ethnic groups in Leicester.

The objectives of this study were to examine current palliative care service provision and its use by the black and minority ethnic (BME) groups in Leicester.* The study comprised two stages, an initial pilot study using semistructured tape recorded interviews, followed by a structured interview schedule. It was set in the voluntary sector, a local hospice and one trust hospital in Leicester. The subjects were 33 palliative care patients and carers from BME groups. The findings identify some deficiencies in access to and provision of palliative care services to BME communities in the city of Leicester. There appears to be a low level of satisfaction among the sample. There are also differences within the group, with 50% indicating that things are unsatisfactory. The main area of need identified was information about illness and available services. The study concluded that providers of palliative care need to examine their policy and practices with regards to whether they are acceptable, accessible and culturally sensitive to the needs of BME groups. A low uptake of services is more likely to suggest inappropriate provision rather than lack of need. An extended version of this article appears in Richardson and Wilson Barnett (1995). *The term black and minority ethnic (BME) group has been used to refer to people from racial or other minorities who may be disadvantaged because of their racial bakground. There is no single accepted term, nor one that can be seen as politically correct or incorrect. It should, however, be recognised that there may be some people who do not identify themselves as black or a minority but who share a common experience of racism (Anthias, 1992; Cole, 1993).

Challenges, benefits and weaknesses of intermediate care: results from five UK case study sites.

The authors explore the views of practitioners and managers on the implementation of intermediate care for elderly people across England, including their perceptions of the challenges involved in its implementation, and their assessment of the main benefits and weaknesses of provision. Qualitative data were collected in five case study sites (English primary care trusts) via semistructured interviews (n = 61) and focus group discussions (n = 21) during 2003 to 2004. Interviewees included senior managers, intermediate care service managers, clinicians and health and social care staff involved in the delivery of intermediate care. The data were analysed thematically using an approach based on the 'framework' method. Workforce and funding shortages, poor joint working between health and social care agencies and lack of support/involvement on the part of the medical profession were identified as the main challenges to developing intermediate care. The perceived benefits of intermediate care for service-users included flexibility, patient centredness and the promotion of independence. The 'home-like' environment in which services were delivered was contrasted favourably with hospitals. Multidisciplinary teamworking and opportunities for role flexibility were identified as key benefits by staff. Insufficient capacity, problems of access and awareness at the interface between intermediate care and 'mainstream' services combined with poor co-ordination between intermediate care services emerged as the main weaknesses in current provision. Despite reported benefits for service-users and staff, the study indicates that intermediate care does not appear to be achieving its full potential for alleviating pressure within health and social care systems. The strengthening of capacity and workforce, improvements to whole systems working and the promotion of intermediate care among doctors and other referrers were identified as key future priorities.

Costs and health outcomes of intermediate care: results from five UK case study sites.

The objectives of this study were to explore the costs and outcomes associated with different types of intermediate care (IC) services, and also to examine the characteristics of patients receiving such services. Five UK case studies of 'whole systems' of IC were used, with data collected on a sample of consecutive IC episodes between January 2003 and January 2004. Statistical differences in costs and outcomes associated with different IC services and patient groups were explored. Factors associated with variation in IC episode outcomes (EuroQol EQ-5D and Barthel Index) were explored using an econometric framework. Data were available for 2253 episodes of IC. In terms of Department of Health criteria, a large proportion of patients (up to 47% of those for whom data were available) in this study were inappropriately admitted to IC services. As regards service function, compared to supported discharge, admission avoidance services were associated with both lower costs and greater health and functional gains. These gains appear to be driven, in part, by illness severity (more dependent patients tended to gain most benefit). In addition, these gains appear to be larger where the admission was appropriate. Our work suggests a need for the development and application of robust and reliable clinical criteria for admission to IC, and close co-operation between hospital and community service providers over selection of patients and targeting of IC and acute care services to meet defined clinical need.