Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Perceived and reported access to the general practitioner: an international comparison of universal access and mixed private/public systems.

Timely and convenient access to primary healthcare is essential for the health of the population as delays can incur additional health and financial costs. Access to health care is under increasing scrutiny as part of the drive to contain escalating costs, while attempting to maintain equity in service provision. The objective was to compare primary care services in Republic of Ireland and Northern Ireland, and to report on perceived and reported access to GP services in universal access and mixed private/public systems. A questionnaire study was performed in Northern Ireland (NI) and the Republic of Ireland (ROI). Patients of 20 practices in the ROI and NI were contacted (n = 22,796). Main outcome measures were overall satisfaction and the access to GP services. Individual responses and scale scores were derived using the General Practice Assessment Questionnaire (G-PAQ). The response rate was 52% (n = 11,870). Overall satisfaction with GP practices was higher in ROI than in NI (84.2% and 80.9% respectively). Access scores were higher in ROI than in NI (69.2% and 57.0% respectively) Less than 1 in 10 patients in ROI waited two or more working days to see a doctor of choice (8.1%) compared to almost half (45.0%) in NI. In NI overall satisfaction decreased as practice size increased; 82.8%, 80.4%, and 75.8%. In both systems, in large practices, accessibility is reduced when compared to smaller practices. The faster access to GP services in ROI may be due to the deterrent effect of the consultation charge freeing up services although, as it is the poorest and sickest who are deterred by the charge this improved accessibility may come at a significant cost in terms of equity. The underlying concern for policy makers centres around provision of equitable services.

‘Together for Health’? How EU Governance of Health Undermines Active Biological Citizenship

This paper explores the potential for active biological citizenship in the discursive space opened by the Community law rights to receive cross-border health care services. By focusing on the European Patients’ Forum and the European Public Health Association as examples of actors facilitated by the European Union, the paper notes how this space might provide some opportunities for patients’ strategic engagement, but also how EU governance discourse is shaping and undermining the potential for activism.

Championing the interface between mental health and child protection: evaluation of a service initiative to improve joint working in Northern Ireland

The importance of establishing effective interagency working between adult mental health services and child care services in order to safeguard children has been repeatedly identified by research, policy, inquiries and inspection reports. This article reports on the evaluation of an initiative in one Health and Social Care Trust in Northern Ireland that aimed to facilitate joint working and so improve service provision and protection for children and families. The Champions Initiative involved identifying a champion in each multi-disciplinary community mental health team and in each family and child care team who would have responsibility for providing information, promoting joint working and identifying any obstacles to better co-operation. The evaluation of this initiative assessed levels of experience, training, confidence, understanding and awareness in the Champions and their team members at baseline. The Champions and their Team Leaders were then followed-up after six months to obtain their qualitative views of the impact of the initiative. The results include comparisons between mental health and child care staff, and crucially, views about whether the initiative has had any impact on working together. This study also generated recommendations for further service development in this complex and important area of practice.

Working across boundaries to improve health outcomes: a case study of a housing support and outreach service for homeless people living with HIV

This paper reports the findings of an evaluation of the ‘Housing Support, Outreach and Referral’ service developed to support people living with HIV who were homeless or at risk of homelessness. The service was set up as part of the Supporting People Health Pilot programme established to demonstrate the policy links between housing support services and health and social care services by encouraging the development of integrated services. The paper considers the role of housing support in improving people's health, and considers the challenges of working across housing, health and social care boundaries. The evaluation of the health pilot employed two main sources of data collection: quarterly project evaluation reports, which collected process data as well as reporting progress against aims and objectives, and semi-structured interviews with professionals from all key stakeholder groups and agencies, and with people who used services. Over the course of 15 months, 56 referrals were received of which 27 were accepted. Fifteen people received tenancy support of whom 12 were helped to access temporary accommodation. At the end of the 15 months, all of the tenancies had been maintained. In addition, 18 people registered with a general practitioner and 13 registered with an HIV clinic. Interviews with professionals emphasised the importance of the local joint working context, the involvement of the voluntary sector and the role of the support workers as factors that accounted for these outcomes. Those using services placed most emphasis on the flexibility of the support worker role. Importantly, interviews with professionals and those using services suggest that the role of support worker incorporates two dimensions – those of networker/navigator as well as advocate – and that both dimensions are important in determining the effectiveness of the service.

The challenges of joint working: lessons from the Supporting People Health Pilot evaluation

Purpose: This paper reports the findings of the evaluation of the Supporting People Health Pilots programme, which was established to demonstrate the policy links between housing support services and health and social care services by encouraging the development of integrated services. The paper highlights the challenges Method: The evaluation of the six health pilots rested on two main sources of data collection: Quarterly Project Evaluation Reports collected process data as well as reporting progress against aims and objectives. Semi-structured interviews—conducted across all key professional stakeholder groups and agencies and with people who used services—explored their experiences of these new services. Results: The ability of pilots to work across organisational boundaries to achieve their aims and objectives was associated not only with agencies sharing an understanding of the purpose of the joint venture, a history of joint working and clear and efficient governance arrangements but on two other characteristics: the extent and nature of statutory sector participation and, whether or not the service is defined by a history of voluntary sector involvement. In particular the pilots demonstrated how voluntary sector agencies appeared to be less constrained by organisational priorities and professional agenda and more able to respond flexibly to meet the complex needs of individuals. Conclusion and discussion: The pilots demonstrate that integrating services to support people with complex needs works best

Secondary prevention in the clinical management of patients with cardiovascular diseases. Core components, standards and outcome measures for referral and delivery.

Despite major improvements in diagnostics and interventional therapies, cardiovascular diseases remain a major health care and socio-economic burden both in western and developing countries, in which this burden is increasing in close correlation to economic growth. Health authorities and the general population have started to recognize that the fight against these diseases can only be won if their burden is faced by increasing our investment on interventions in lifestyle changes and prevention. There is an overwhelming evidence of the efficacy of secondary prevention initiatives including cardiac rehabilitation in terms of reduction in morbidity and mortality. However, secondary prevention is still too poorly implemented in clinical practice, often only on selected populations and over a limited period of time. The development of systematic and full comprehensive preventive programmes is warranted, integrated in the organization of national health systems. Furthermore, systematic monitoring of the process of delivery and outcomes is a necessity. Cardiology and secondary prevention, including cardiac rehabilitation, have evolved almost independently of each other and although each makes a unique contribution it is now time to join forces under the banner of preventive cardiology and create a comprehensive model that optimizes long term outcomes for patients and reduces the future burden on health care services. These are the aims that the Cardiac Rehabilitation Section of the European Association for Cardiovascular Prevention & Rehabilitation has foreseen to promote secondary preventive cardiology in clinical practice.

An exploration into the palliative and end-of-life experiences of carers of people with Parkinson's disease

Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

I can't get a breath: experiences of living with advanced chronic obstructive pulmonary disease

This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. For most people, palliative care was associated with end of life; therefore, they were unwilling to discuss the issue. There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.

Responding to desire to die statements from patients with advanced disease:recommendations for health professionals

It is not uncommon for patients with advanced incurable disease to express a desire to hasten their death. Health professionals often have difficulty responding to such statements, and find it challenging to ascertain why these statements are made. Health professionals may struggle to determine whether a 'desire to die' statement (DTDS) is about a request for hastened death, a sign of psychosocial distress, or merely a passing comment that is not intended to be heard literally as a death wish. Given the lack of guidelines to assist health professionals with this issue, we have prepared multidisciplinary recommendations for responding to a DTDS, underpinned by key principles of therapeutic communication and a systematic review of empirical literature. Where the relevant literature was lacking, the recommendations were drafted by the authors (clinicians and/ or academics from the following disciplines: nursing, medicine, psychiatry, psychology, sociology, aged care and theology), based on their expert opinion. Multiple drafts of the recommendations were circulated to the authors for refinement until consensus was reached. Strategies for advancing the evidence base for the maturation of guidelines in this area are offered.

The clinical effectiveness and cost-effectiveness of screening for open angle glaucoma:A systematic review and economic evaluation

Objectives: To assess whether open angle glaucoma (OAG) screening meets the UK National Screening Committee criteria, to compare screening strategies with case finding, to estimate test parameters, to model estimates of cost and cost-effectiveness, and to identify areas for future research. Data sources: Major electronic databases were searched up to December 2005. Review methods: Screening strategies were developed by wide consultation. Markov submodels were developed to represent screening strategies. Parameter estimates were determined by systematic reviews of epidemiology, economic evaluations of screening, and effectiveness (test accuracy, screening and treatment). Tailored highly sensitive electronic searches were undertaken. Results: Most potential screening tests reviewed had an estimated specificity of 85% or higher. No test was clearly most accurate, with only a few, heterogeneous studies for each test. No randomised controlled trials (RCTs) of screening were identified. Based on two treatment RCTs, early treatment reduces the risk of progression. Extrapolating from this, and assuming accelerated progression with advancing disease severity, without treatment the mean time to blindness in at least one eye was approximately 23 years, compared to 35 years with treatment. Prevalence would have to be about 3-4% in 40 year olds with a screening interval of 10 years to approach cost-effectiveness. It is predicted that screening might be cost-effective in a 50-year-old cohort at a prevalence of 4% with a 10-year screening interval. General population screening at any age, thus, appears not to be cost-effective. Selective screening of groups with higher prevalence (family history, black ethnicity) might be worthwhile, although this would only cover 6% of the population. Extension to include other at-risk cohorts (e.g. myopia and diabetes) would include 37% of the general population, but the prevalence is then too low for screening to be considered cost-effective. Screening using a test with initial automated classification followed by assessment by a specialised optometrist, for test positives, was more cost-effective than initial specialised optometric assessment. The cost-effectiveness of the screening programme was highly sensitive to the perspective on costs (NHS or societal). In the base-case model, the NHS costs of visual impairment were estimated as £669. If annual societal costs were £8800, then screening might be considered cost-effective for a 40-year-old cohort with 1% OAG prevalence assuming a willingness to pay of £30,000 per quality-adjusted life-year. Of lesser importance were changes to estimates of attendance for sight tests, incidence of OAG, rate of progression and utility values for each stage of OAG severity. Cost-effectiveness was not particularly sensitive to the accuracy of screening tests within the ranges observed. However, a highly specific test is required to reduce large numbers of false-positive referrals. The findings that population screening is unlikely to be cost-effective are based on an economic model whose parameter estimates have considerable uncertainty, in particular, if rate of progression and/or costs of visual impairment are higher than estimated then screening could be cost-effective. Conclusions: While population screening is not cost-effective, the targeted screening of high-risk groups may be. Procedures for identifying those at risk, for quality assuring the programme, as well as adequate service provision for those screened positive would all be needed. Glaucoma detection can be improved by increasing attendance for eye examination, and improving the performance of current testing by either refining practice or adding in a technology-based first assessment, the latter being the more cost-effective option. This has implications for any future organisational changes in community eye-care services. Further research should aim to develop and provide quality data to populate the economic model, by conducting a feasibility study of interventions to improve detection, by obtaining further data on costs of blindness, risk of progression and health outcomes, and by conducting an RCT of interventions to improve the uptake of glaucoma testing. © Queen's Printer and Controller of HMSO 2007. All rights reserved.

Home-based child development interventions for preschool children from socially disadvantaged families

BACKGROUND
Social disadvantage can have a significant impact on early child development, health and wellbeing. What happens during this critical period is important for all aspects of development. Caregiving competence and the quality of the environment play an important role in supporting development in young children and parents have an important role to play in optimising child development and mitigating the negative effects of social disadvantage. Home-based child development programmes aim to optimise children's developmental outcomes through educating, training and supporting parents in their own home to provide a more nurturing and stimulating environment for their child.

OBJECTIVES
To determine the effects of home-based programmes aimed specifically at improving developmental outcomes for preschool children from socially disadvantaged families.

SEARCH STRATEGY
We searched the following databases between 7 October and 12 October 2010: Cochrane Central Register of Controlled Trials (CENTRAL) (2010, Issue 4), MEDLINE (1950 to week 4, September 2010), EMBASE (1980 to Week 39, 2010), CINAHL (1937 to current), PsycINFO (1887 to current), ERIC (1966 to current), ASSIA (1987 to current), Sociological Abstracts (1952 to current), Social Science Citation Index (1970 to current). We also searched reference lists of articles.

SELECTION CRITERIA
Randomised controlled trials comparing home-based preschool child development interventions with a 'standard care' control. Participants were parents with children up to the age of school entry who were socially disadvantaged in respect of poverty, lone parenthood or ethnic minority status.

DATA COLLECTION AND ANALYSIS
Two authors independently selected studies, assessed the trials' risk of bias and extracted data.

RESULTS
We included seven studies, which involved 723 participants. We assessed four of the seven studies as being at high risk of bias and three had an unclear risk of bias; the quality of the evidence was difficult to assess as there was often insufficient detail reported to enable any conclusions to be drawn about the methodological rigour of the studies. Four trials involving 285 participants measured cognitive development and we synthesised these data in a meta-analysis. Compared to the control group, there was no statistically significant impact of the intervention on cognitive development (standardised mean difference (SMD) 0.30; 95% confidence interval -0.18 to 0.78). Only three studies reported socioemotional outcomes and there was insufficient data to combine into a meta-analysis. No study reported on adverse effects.

AUTHORS’ CONCLUSIONS
This review does not provide evidence of the effectiveness of home-based interventions that are specifically targeted at improving developmental outcomes for preschool children from socially disadvantaged families. Future studies should endeavour to better document and report their methodological processes.

Intergenerational Solidarity and Justice in Ireland: towards a new national dialogue

Gross domestic product plummets. Unemployment soars. Large-scale emigration reemerges after a decade of labor-market driven immigration. The International Monetary Fund and European Union are called to bail out the economy. Indebtedness haunts households in the aftermath of a spectacular housing market crash. The Celtic Tiger is firmly consigned to history books as Ireland’s economic fortunes have waned with unprecedented rapidity. The trials of the economy and policy are highly visible in the media and political debates. However, we know little about how these public travails are reflected in the private sphere where the recession is translated into mass emigration of young workers, defaults on mortgages, former twoearner households turning into no-earner families, and cutbacks in health and social care services that leave many younger and older citizens without the supports on which they could rely.

Views of pharmacy graduates and pharmacist tutors on evidence-based practice in relation to over-the-counter consultations: a qualitative study

RATIONALE, AIMS AND OBJECTIVES: Health care services offered to the public should be based on the best available evidence. We aimed to explore pharmacy tutors' and trainees' views on the importance of evidence when making decisions about over-the-counter (OTC) medicines and also to investigate whether the tutor influenced the trainee in practice.

METHODS: Following ethical approval and piloting, semi-structured interviews were conducted with pharmacy graduates (trainees) and pharmacist tutors. Transcribed interview data were entered into the NVivo software package (version 10), coded and analysed via thematic analysis.

RESULTS: Twelve trainees (five males, seven females) and 11 tutors (five males, six females) participated. Main themes that emerged were (in)consistency and contradiction, confidence, acculturation, and continuation and perpetuation. Despite having an awareness of the importance and potential benefits, an evidence-based approach did not seem to be routinely or consistently implemented in practice. Confidence in products was largely derived from personal use and patient feedback. A lack of discussion about evidence was justified on the basis of not wanting to lessen patient confidence in requested product(s) or possibly negating the placebo effect. Trainees became acculturated to 'real-life' practice; university teaching and evidence was deemed less relevant than meeting customer expectations. The tutor's actions were mirrored by their trainee resulting in continuation and perpetuation of the same professional attitudes and behaviours.

CONCLUSIONS: Evidence appeared to have limited influence on OTC decision making. The tutor played a key role in the trainee's professional development. More work could be performed to investigate how evidence can be regarded as relevant and something that is consistently implemented in practice.

Parents’ and young people’s involvement in designing a trial of ventilator weaning

Consulting with users is considered best practice and is highly recommended in designing new trials. As part of our feasibility work, we undertook a consultation exercise with parents, ex-patients and young people prior to designing a trial of protocol-based ventilator weaning. Our aims were to (1) ascertain views on the relevance and importance of the trial; (2) determine the important parent/patient outcome measures; and (3) ascertain views on informed consent in a cluster randomized controlled trial. We conducted audio-recorded face-to-face, telephone and focus group interviews with parents and young people. Data were content analysed to generate information to address our specific consultation objectives. The setting was the north-western region of England. A total of 16 participants were interviewed: 2 parents of paediatric intensive care unit (PICU) survivors; 1 PICU survivor; and 13 young people from the former Medicines for Children Research Network. The trial objectives were deemed important and relevant, and participants considered the most important outcome measure to be the length of time on ventilation. Parents and young people did not consider written informed consent to be a necessary requirement in the context of this trial, rather awareness of unit participation in the trial was important with the opportunity of opting out of data collection. This consultation provided useful, pragmatic insights to inform trial design. We encountered significant challenges in recruiting parents and young people for this consultation exercise, and novel recruitment methods need to be considered for future work in this field. Patient and public involvement is essential to ensure that future trials answer parent-relevant questions and have meaningful outcome measures, as well as involving parents and young people in the general development of health care services.