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Background All NHS providers collect data on patient experience, although there is limited evidence about what to measure or how to collect and use data to improve services. We studied inpatient mental health services, as these are important, costly and often unpopular services within which serious incidents occur. Aims To identify which approaches to collecting and using patient experience data are most useful for supporting improvements in inpatient mental health care. Design The study comprised five work packages: a systematic review to identify evidence-based patient experience themes relevant to inpatient mental health care (work package 1); a survey of patient experience leads in NHS mental health trusts in England to describe current approaches to collecting and using patient experience data in inpatient mental health services, and to populate the sampling frame for work package 3 (work package 2); in-depth case studies at sites selected using the work package 2 findings, analysed using a realist approach (work package 3); a consensus conference to agree on recommendations about best practice (work package 4); and health economic modelling to estimate resource requirements and potential benefits arising from the adoption of best practice (work package 5). Using a realist methodology, we analysed and presented our findings using a framework based on four stages of the patient experience data pathway, for which we coined the term CRAICh (collecting and giving, receiving and listening, analysing, and quality improvement and change). The project was supported by a patient and public involvement team that contributed to work package 1 and the development of programme theories (work package 3). Two employed survivor researchers worked on work packages 2, 3 and 4. Setting The study was conducted in 57 NHS providers of inpatient mental health care in England. Participants In work package 2, 47 NHS patient experience leads took part and, in work package 3, 62 service users, 19 carers and 101 NHS staff participated, across six trusts. Forty-four individuals attended the work package 4 consensus conference. Results The patient experience feedback cycle was rarely completed and, even when improvements were implemented, these tended to be environmental rather than cultural. There were few examples of triangulation with patient safety or outcomes data. We identified 18 rules for best practice in collecting and using inpatient mental health experience data, and 154 realist context–mechanism–outcome configurations that underpin and explain these. Limitations The study was cross-sectional in design and we relied on examples of historical service improvement. Our health economic models (in work package 5) were therefore limited in the estimation and modelling of prospective benefits associated with the collection and use of patient experience data. Conclusions Patient experience work is insufficiently embedded in most mental health trusts. More attention to analysis and interpretation of patient experience data is needed, particularly to ways of triangulating these with outcomes and safety data. Future work Further evaluative research is needed to develop and evaluate a locally adapted intervention based on the 18 rules for best practice. Study registration The systematic review (work package 1) is registered as PROSPERO CRD42016033556. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 21. See the NIHR Journals Library website for further project information.

BackgroundIn-patients in crisis report poor experiences of mental healthcare not conducive to recovery. Concerns include coercion by staff, fear of assault from other patients, lack of therapeutic opportunities and limited support. There is little high-quality evidence on what is important to patients to inform recovery-focused care.AimsTo conduct a systematic review of published literature, identifying key themes for improving experiences of in-patient mental healthcare.MethodA systematic search of online databases (MEDLINE, PsycINFO and CINAHL) for primary research published between January 2000 and January 2016. All study designs from all countries were eligible. A qualitative analysis was undertaken and study quality was appraised. A patient and public reference group contributed to the review.ResultsStudies (72) from 16 countries found four dimensions were consistently related to significantly influencing in-patients' experiences of crisis and recovery-focused care: the importance of high-quality relationships; averting negative experiences of coercion; a healthy, safe and enabling physical and social environment; and authentic experiences of patient-centred care. Critical elements for patients were trust, respect, safe wards, information and explanation about clinical decisions, therapeutic activities, and family inclusion in care.ConclusionsA number of experiences hinder recovery-focused care and must be addressed with the involvement of staff to provide high-quality in-patient services. Future evaluations of service quality and development of practice guidance should embed these four dimensions.Declaration of interestK.B. is editor of British Journal of Psychiatry and leads a national programme (Synergi Collaborative Centre) on patient experiences driving change in services and inequalities.

Background: Emerging evidence focuses on the importance of the role of leadership in successfully transferring research evidence into practice. However, little is known about the interaction betwee ...

Background: Facilitation is a promising implementation intervention, which requires theory-informed evaluation. This paper presents an exemplar of a multi-country realist process evaluation that was embedded in the first international randomised controlled trial evaluating two types of facilitation for implementing urinary continence care recommendations. We aimed to uncover what worked (and did not work), for whom, how, why and in what circumstances during the process of implementing the facilitation interventions in practice.Methods: This realist process evaluation included theory formulation, theory testing and refining. Data were collected in 24 care home sites across four European countries. Data were collected over four time points using multiple qualitative methods: observation (372 h), interviews with staff (n = 357), residents (n = 152), next of kin (n = 109) and other stakeholders (n = 128), supplemented by facilitator activity logs. A combined inductive and deductive data analysis process focused on realist theory refinement and testing.Results: The content and approach of the two facilitation programmes prompted variable opportunities to align and realign support with the needs and expectations of facilitators and homes. This influenced their level of confidence in fulfilling the facilitator role and ability to deliver the intervention as planned. The success of intervention implementation was largely dependent on whether sites prioritised their involvement in both the study and the facilitation programme. In contexts where the study was prioritised (including release of resources) and where managers and staff support was sustained, this prompted collective engagement (as an attitude and action). Internal facilitators' (IF) personal characteristics and abilities, including personal and formal authority, in combination with a supportive environment prompted by managers triggered the potential for learning over time. Learning over time resulted in a sense of confidence and personal growth, and enactment of the facilitation role, which resulted in practice changes.Conclusion: The scale and multi-country nature of this study provided a novel context to conduct one of the few trial embedded realist-informed process evaluations. In addition to providing an explanatory account of implementation processes, a conceptual platform for future facilitation research is presented. Finally, a realist-informed process evaluation framework is outlined, which could inform future research of this nature.Trial registration: Current controlled trials ISRCTN11598502.

Background: Health care practice needs to be underpinned by high quality research evidence, so that the best possible care can be delivered. However, evidence from research is not always utilised in practice. This study used the Promoting Action on Research Implementation in Health Services (PARIHS) framework as its theoretical underpinning to test whether two different approaches to facilitating implementation could affect the use of research evidence in practice.Methods: A pragmatic clustered randomised controlled trial with embedded process and economic evaluation was used. The study took place in four European countries across 24 long-term nursing care sites, for people aged 60 years or more with documented urinary incontinence. In each country, sites were randomly allocated to standard dissemination, or one of two different types of facilitation. The primary outcome was the documented percentage compliance with the continence recommendations, assessed at baseline, then at 6, 12, 18, and 24 months after the intervention.Data were analysed using STATA15, multi-level mixed-effects linear regression models were fitted to scores for compliance with the continence recommendations, adjusting for clustering.Results: Quantitative data were obtained from reviews of 2313 records. There were no significant differences in the primary outcome (documented compliance with continence recommendations) between study arms and all study arms improved over time.Conclusions: This was the first cross European randomised controlled trial with embedded process evaluation that sought to test different methods of facilitation. There were no statistically significant differences in compliance with continence recommendations between the groups. It was not possible to identify whether different types and "doses" of facilitation were influential within very diverse contextual conditions. The process evaluation (Rycroft-Malone et al., Implementation Science. doi: 10.1186/s13012-018-0811-0) revealed the models of facilitation used were limited in their ability to overcome the influence of contextual factors.Trial registration: Current Controlled Trials ISRCTN11598502. Date 4/2/10.The research leading to these results has received funding from the European Union's Seventh Framework Programme (FP7/2007–2013) under grant agreement no. 223646.

Most people who die in hospital do so with a DNACPR order in place, these orders are the focus of considerable debate. Aim To identify factors, facilitators and barriers involved in DNACPR decision-making and implementation. Methods All study designs and interventions were eligible for inclusion. Studies were appraised guided by CASP tools. A qualitative analysis was undertaken. Data sources Included electronic databases: Medline, Embase, ASSIA, Cochrane library, CINAHL, PsycINFO, Web of Science, the King's Fund Library and scanning reference lists of included studies. Results Four key themes were identified: Considering the decision – by senior physicians, nursing staff, patients and relatives. Key triggers included older age, co-morbidities, adverse prognostic factors, quality of life and the likelihood of success of CPR. Discussing the decision – levels, and combinations, of physician and nursing skills, patient understanding and family involvement produced various outcomes. Implementing the decision – the lack of clear documentation resulted in a breakdown in communications within health teams. Staff knowledge and support of guidelines and local policies varied. Consequences of a DNACPR decision – inadequate understanding by staff resulted in suboptimal care, and incorrect withdrawal of treatment. Conclusion Significant variability was identified in DNACPR decision-making and implementation. The evidence base is weak but the absence of evidence does not indicate an absence of good practice. Issues are complex, and dependent on a number of factors. Misunderstandings and poor discussions can be overcome such as with an overall care plan to facilitate discussions and reduce negative impact of DNACPR orders on aspects of patient care.

IntroductionPatient and public involvement (PPI) is inconsistently reported in health and social care research. Improving the quality of how PPI is reported is critical in developing a higher quality evidence base to gain a better insight into the methods and impact of PPI. This paper describes the methods used to develop and gain consensus on guidelines for reporting PPI in research studies (updated version of the Guidance for Reporting Patient and Public Involvement (GRIPP2)).MethodsThere were three key stages in the development of GRIPP2: identification of key items for the guideline from systematic review evidence of the impact of PPI on health research and health services, a three-phase online Delphi survey with a diverse sample of experts in PPI to gain consensus on included items and a face-to-face consensus meeting to finalise and reach definitive agreement on GRIPP2. Challenges and lessons learnt during the development of the reporting guidelines are reported.DiscussionThe process of reaching consensus is vital within the development of guidelines and policy directions, although debate around how best to reach consensus is still needed. This paper discusses the critical stages of consensus development as applied to the development of consensus for GRIPP2 and discusses the benefits and challenges of consensus development.

Background:\ud Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services.\ud \ud Objective:\ud To develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community.\ud \ud Design:\ud Lead and co-researchers conducted semi-structured interviews with 15 pairs of carers and patients with memory loss at discharge, 6 and 12 weeks post-discharge and one semi-structured interview with health and social care professionals and Admiral Nurses. Framework analysis was guided by co-researchers. Two focus groups of study participants, facilitated by co-researchers, met to shape and finalize recommendations.\ud \ud Setting and participants:\ud Recruitment took place in acute hospitals in two National Health Service (NHS) Trusts in England. Patients were aged 65 and over, with memory loss, an in-patient for at least 1 week returning to the community, who had a carer consenting to be in the study.\ud \ud Results:\ud Poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services.\ud \ud Discussion and conclusions:\ud Vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities.

Informal carers are increasingly providing specialist care at home for people living with motor neurone disease. The carers may experience significant deterioration in their quality of life as a result of the physical and psychological burden they undertake. This systematic review seeks to provide evidence-based recommendations to enable healthcare professionals to support carers appropriately to maintain their wellbeing and to continue providing care at home. Inclusion criteria included articles focusing on the experience of informal carers of people with motor neurone disease, particularly when reporting on their perspective of professional services. Twenty-three studies were included and a thematic analysis was undertaken. Four key recommendations were identified: providing support, early access to palliative care, information regarding availability of services, and offering carers training for using specialist equipment. These recommendations offer healthcare professionals practical, cost-effective suggestions to improve existing services.

Our objective was to develop a validated questionnaire that can measure the extent to which dimensions of caring affect the health of carers of patients with motor neuron disease. An initial 190-item questionnaire was developed from in-depth interviews, focus groups and two pilot studies with carers. Factor analysis was applied to the data obtained from a large survey in the UK that identified the underlying dimensions of caring. The newly formed scales were tested for reliability using Cronbach's alpha, and for construct validity. The SF36-v2 was the benchmark instrument on which correlations were made to ascertain the relationship with carers' health. A 34-item instrument was developed which has demonstrated promising evidence of internal reliability and validity for six scales: emotional well-being, physical well-being, self care, disturbed sleep, carers' support needs and statutory services. High correlations were found with the Mental Component Score summary scale of the SF-36v2 (0.40-0.66). The development and testing of the MNDCQ indicates that as the carers' score on the MNDCQ increases, suggesting a higher level of burden, they are more likely to report poor health. Further longitudinal studies are needed to further test the instruments' ability to detect change over time.

BackgroundCardiac arrest is the final common step in the dying process. In the right context, resuscitation can reverse the dying process, yet success rates are low. However, cardiopulmonary resuscitation (CPR) is a highly invasive medical treatment, which, if applied in the wrong setting, can deprive the patient of dignified death. Do-not-attempt-cardiopulmonary-resuscitation (DNACPR) decisions provide a mechanism to withhold CPR. Recent scientific and lay press reports suggest that the implementation of DNACPR decisions in NHS practice is problematic.Aims and objectivesThis project sought to identify reasons why conflict and complaints arise, identify inconsistencies in NHS trusts’ implementation of national guidelines, understand health professionals’ experience in relation to DNACPR, its process and ethical challenges, and explore the literature for evidence to improve DNACPR policy and practice.MethodsA systematic review synthesised evidence of processes, barriers and facilitators related to DNACPR decision-making and implementation. Reports from NHS trusts, the National Reporting and Learning System, the Parliamentary and Health Service Ombudsman, the Office of the Chief Coroner, trust resuscitation policies and telephone calls to a patient information line were reviewed. Multiple focus groups explored service-provider perspectives on DNACPR decisions. A stakeholder group discussed the research findings and identified priorities for future research.ResultsThe literature review found evidence that structured discussions at admission to hospital or following deterioration improved patient involvement and decision-making. Linking DNACPR to overall treatment plans improved clarity about goals of care, aided communication and reduced harms. Standardised documentation improved the frequency and quality of recording decisions. Approximately 1500 DNACPR incidents are reported annually. One-third of these report harms, including some instances of death. Problems with communication and variation in trusts’ implementation of national guidelines were common. Members of the public were concerned that their wishes with regard to resuscitation would not be respected. Clinicians felt that DNACPR decisions should be considered within the overall care of individual patients. Some clinicians avoid raising discussions about CPR for fear of conflict or complaint. A key theme across all focus groups, and reinforced by the literature review, was the negative impact on overall patient care of having a DNACPR decision and the conflation of ‘do not resuscitate’ with ‘do not provide active treatment’.LimitationsThe variable quality of some data sources allows potential overstatement or understatement of findings. However, data source triangulation identified common issues.ConclusionThere is evidence of variation and suboptimal practice in relation to DNACPR decisions across health-care settings. There were deficiencies in considering, discussing and implementing the decision, as well as unintended consequences of DNACPR decisions being made on other aspects of patient care.Future workRecommendations supported by the stakeholder group are standardising NHS policies and forms, ensuring cross-boundary recognition of DNACPR decisions, integrating decisions with overall treatment plans and developing tools and training strategies to support clinician and patient decision-making, including improving communication.Study registrationThis study is registered as PROSPERO CRD42012002669.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Background There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. Objective To identify the impact of patient and public involvement on health and social care research. Design A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. Inclusion criteria All study types that reported the impact PPI had on the health and/or social care research study. Main results A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. Conclusion This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.

While patient and public involvement (PPI) in health and social care research has progressed successfully in the last decade, a range of difficulties with the evidence base exist, including poor understanding of the concept of impact, limited theorization and an absence of quantitative impact measurement. In this paper, we argue that a paradigm change towards robust measurement of the impact of involvement in research is needed to complement qualitative explorations. We argue that service users should be collaboratively involved in the conceptualization, theorization and development of instruments to measure PPI impact. We consider the key advantages measurement would bring in strengthening the PPI evidence base through a greater understanding of what works, for whom, in what circumstances and why.

Objectives: The aim of this study was to develop the GRIPP (Guidance for Reporting Involvement of Patients and Public) checklist to enhance the quality of PPI reporting.Methods: Thematic analysis was used to synthesize key issues relating to patient and public involvement (PPI) identified in the PIRICOM and PAPIRIS systematic reviews. These issues informed the development of the GRIPP checklist.Results: The key issues identified included limited conceptualization of PPI, poor quality of methods reporting, unclear content validity of studies, poor reporting of context and process, enormous variability in the way impact is reported, little formal evaluation of the quality of involvement, limited focus on negative impacts, and little robust measurement of impact. The GRIPP checklist addresses these key issues.Conclusion: The reporting of patient and public involvement in health research needs significant enhancement. The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting. Better reporting will strengthen the PPI evidence-base and so enable more effective evaluation of what PPI works, for whom, in what circumstances and why.

Objectives: To evaluate the effectiveness and cost-effectiveness of an intensive home visiting programme in improving outcomes for vulnerable families. Design: Multicentre randomised controlled trial in which eligible women were allocated to receive home visiting (n=67) or standard services (n=64). Incremental cost analysis. Setting: 40 GP practices across two counties in the UK Participants: 131 vulnerable pregnant women. Intervention: Selected health visitors were trained in the Family Partnership Model to provide a weekly home visiting service from 6-months antenatally to 12 months postnatally. Main outcome measures: Mother-child interaction, maternal psychological health attitudes and behaviour, infant functioning and development, and risk of neglect or abuse. Results: At 12-months differences favouring the home visited group were observed on an independent assessment of maternal sensitivity (p

In the United Kingdom (UK), official bodies such as the Department of Health and research funders such as the National Institute for Health Research support and encourage lay involvement in all stages of research studies. The SHARED study has had substantial patient and public involvement (PPI) from developing the idea to dissemination. The aim of the study has been to develop recommendations led by service users for health and social care professionals to use at hospital discharge and in care planning for people living with memory loss and their carers. This article is about how the study started and the benefits, costs and challenges we encountered as the lead and lay co-researchers. Once we were successful with the grant application, we had to recruit and train the lay co-researchers and obtain various approvals before we could start the project. We had various support from funders, the Research Ethics Committee, lay members of Alzheimer’s Society and from the lay co-researchers. However, we encountered some challenges with paying the lay co-researchers and with getting the approval for the co-researchers to interview staff on NHS premises. The challenges were overcome eventually but some aspects of the study changed because of this. We suggest that some changes could be made to the research system which would lead to greater inclusion of the lay co-researchers in research studies and would make the process more straightforward for the research team. Background Involving patients and the public in all stages of research has been the focus of the SHARED study. Patient and public involvement (PPI) is an important strategic priority for the Department of Health and funders such as the National Institute for Health Research. The aim of this paper is to describe the benefits, challenges and costs involved in setting up the research study with lay members as part of the research team. The study focused on developing service user-led recommendations for people with memory loss and their carers, on discharge from acute hospital to the community. Methods This began with a discussion of an initial research idea with a lay group of carers and people living with dementia. Once funded, approval was sought from the Research Ethics Committee and NHS Trusts to conduct the research including the active involvement of lay co-researchers. Finally, to recruit, train and pay lay co-researchers in their role. Results The benefits of PPI have included developing ideas which are important to people living with memory loss; support for PPI received from the funders and research ethics committee, high levels of interest from volunteer groups, and lasting enthusiasm from many of the co-researchers. Organisational challenges were met in the requirement for research passports and with payment methods for the co-researchers. Training was beneficial but incurred extra costs for repeated training days. Discussion Overall the benefits outweighed the challenges which were overcome to varying degrees. The lay co-researchers gained membership of a study group and a beneficial partnership developed with the third sector. The biggest challenge was in overcoming the differences in approach to lay co-researchers between NHS Trusts. Organisational culture has been slow to incorporate PPI and this has not yet been fully addressed. It has the potential to delay the start of projects, affect recruitment time, incur extra research costs and disadvantage PPI. Conclusion Buy-in to service user involvement in research studies could be improved by clarifying the requirements for NHS Trust approval and by simplifying the system for financial reimbursement to lay co-researchers. This would improve inclusivity and provide a smoother process for the research team and the co-researchers.

Background: Parenting styles and parent-child relationships are a determinant of emotional and behavioural problems in children. Controlled trials of parenting programmes have been shown to be effective in helping parents of children with clinical levels of behaviour problems, but there is little research on the impact of such programmes in families where children's development falls in the 'normal' range. Also, such trials do not shed light on why or how programmes do, or do not, work, or how they might be improved. Methods: A qualitative study of the impact of the Webster-Stratton 'Parents and Children Series' programme on participants in a controlled trial of this programme, whose children's behaviour was below average, but, for the majority, in the normal range. Data were gathered in interviews, open-ended questions on a questionnaire and tape recordings of group leader supervision sessions. Results: Parents reported increased confidence, better relationships with their children, successful use of new behaviour management techniques and improvements in their children's behaviour as a result of the programme. One parent found the programme unsuitable because she was already using the techniques that were taught, and another parent felt the programme was designed for parents of younger children. Many parents reported that additional sessions would have been useful to consolidate what they had learnt, and some parents felt the course would have been more effective if their partners had attended. Conclusions: The Webster-Stratton Parenting Programme is useful for parents of 'normal' children as well as for parents of children whose behaviour is in the clinical range. Follow-up sessions and attendance by both parents might increase effectiveness. The findings of this study suggest greater benefits to parents and children than were apparent in the controlled trial.

This paper describes a number of themes that emerged from a qualitative research study into the effects of a parenting programme on family life (Mockford, 2000). Existing research points to many valuable outcomes of parenting programmes including improved maternal psychosocial health (Barlow and Coren, 2000), improved relationships (Grimshaw and McGuire, 1998; Smith, 1997) and reduced child behaviour problems (Barlow, 1999; Patterson et al., 1993; 2002b). There has, however, been little qualitative work undertaken with parents who have attended a parenting programme. The findings from this study show that in addition to many positive consequences, there were a number of unintended consequences of attending a parenting programme. In particular, women spoke of the difficulties that they faced at home when trying to apply the techniques that they had learned on the parenting programme. These difficulties included gaining the support of partners in implementing the techniques learned, changing their established habits and those of their partners, finding the time to parent together, and incorporating the techniques into their already busy lives. These findings also suggest that a change in one parent’s approach to parenting may result in increased discrepancies in parenting techniques between the parent who attended the programme and the parent who did not, and that this may result in parental conflict.

Aims: To test the effectiveness at one year of the Webster Stratton Parents and Children Series group parenting programme in a population sample of parents. Methods: In a multicentre block randomised controlled trial, parents of children aged 2–8 years in 116 families who scored in the upper 50% on a validated behaviour inventory, took part in Webster-Stratton's 10 week parenting programme led by trained and supervised health visitors. The following outcome measures were used: Eyberg Child Behaviour Inventory, Goodman Strengths and Difficulties Questionnaire, General Health Questionnaire, Parenting Stress Index, Rosenberg Self Esteem Scale. Results: The intervention significantly reduced child behaviour problems and improved mental health at immediate and 6 month follow ups. One year differences between control and intervention groups were not significant. Qualitative results suggest that these findings might be attributable in part to either Hawthorne effects or contamination of control group. At interview parents described ways in which the programme had improved their mental health. They reported gains in confidence and feeling less stressed. Some also reported beneficial changes in their own and their children's behaviour and improved relationships with their children. Some spoke of a need for further sessions to support the behaviour changes they had managed to make, and some the desire for attendance by both parents. Conclusions: Parenting programmes have the potential to promote mental health and reduce social inequalities, but further work is needed to improve long term effectiveness.

Aims: To establish the prevalence of behaviour problems and the level of interest in parenting programmes in a population sample of parents of children aged 2–8 years, and to assess to what extent they are associated with socioeconomic factors. Methods: Postal survey of parents of children aged 2–8 years registered with three general practitioner surgeries; 70% response rate. Results: One fifth of parents from this population sample were experiencing difficulties with their children's behaviour. While behaviour problems were more prevalent in the manual social classes, "need" was high across all social groups. Just under a fifth of parents reported prior attendance at a parenting programme and 58% expressed interest in attending in the future. Interest in attending a parenting programme was not class related, but was predicted by the age of the eldest child and the existence of behaviour problems. Conclusion: Behaviour problems are an important public health issue. Findings support the use of a non-selective approach to the provision of parenting programmes in the UK.

Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research.Searches were undertaken from 1995 to April 2012 in the electronic databases MEDLINE, EMBASE, PsycINFO, Cochrane library, CINAHL, HMIC and HELMIS. Searches were undertaken for grey literature using the databases InvoNet and NHS Evidence.Studies were included if they included the impact of PPI on individual service users, researchers or communities under research. Studies were excluded if they were in a foreign language (unless they were deemed critical to the systematic review) or were in children and adolescent services.Data were extracted using a narrative synthesis, and quality was assessed using the Critical Appraisal Skills Programme.Service users reported feeling empowered and valued, gaining confidence and life skills. Researchers developed a greater understanding and insight into their research area, gaining respect and a good rapport with the community. The community involved in research became more aware and knowledgeable about their condition. However, lack of preparation and training led some service users to feel unable to contribute to the research, while other service users and communities reported feeling overburdened with the work involved. Researchers reported difficulties in incorporating PPI in meaningful ways due to lack of money and time.This is the first international systematic review to focus on the impact of PPI on the people involved in the process. The beneficial and challenging impacts reported highlight the importance of optimising the context and processes of involvement, so creating the potential for PPI to impact positively on the research itself.

Background Research evidence underpins best practice, but is not always used in healthcare. The Promoting Action on Research Implementation in Health Services (PARIHS) framework suggests that the nature of evidence, the context in which it is used, and whether those trying to use evidence are helped (or facilitated) affect the use of evidence. Urinary incontinence has a major effect on quality of life of older people, has a high prevalence, and is a key priority within European health and social care policy. Improving continence care has the potential to improve the quality of life for older people and reduce the costs associated with providing incontinence aids. Objectives This study aims to advance understanding about the contribution facilitation can make to implementing research findings into practice via: extending current knowledge of facilitation as a process for translating research evidence into practice; evaluating the feasibility, effectiveness, and cost-effectiveness of two different models of facilitation in promoting the uptake of research evidence on continence management; assessing the impact of contextual factors on the processes and outcomes of implementation; and implementing a pro-active knowledge transfer and dissemination strategy to diffuse study findings to a wide policy and practice community. Setting and sample Four European countries, each with six long-term nursing care sites (total 24 sites) for people aged 60 years and over with documented urinary incontinence Methods and design Pragmatic randomised controlled trial with three arms (standard dissemination and two different programmes of facilitation), with embedded process and economic evaluation. The primary outcome is compliance with the continence recommendations. Secondary outcomes include proportion of residents with incontinence, incidence of incontinence-related dermatitis, urinary tract infections, and quality of life. Outcomes are assessed at baseline, then at 6, 12, 18, and 24 months after the start of the facilitation interventions. Detailed contextual and process data are collected throughout, using interviews with staff, residents and next of kin, observations, assessment of context using the Alberta Context Tool, and documentary evidence. A realistic evaluation framework is used to develop explanatory theory about what works for whom in what circumstances. Trial registration Current Controlled Trials ISRCTN11598502.

Purpose. Patient and public involvement (PPI) has become an integral part of health care with its emphasis on including and empowering individuals and communities in the shaping of health and social care services. The aims of this study were to identify the impact of PPI on UK National Health Service (NHS) healthcare services and to identify the economic cost. It also examined how PPI is being defined, theorized and conceptualized, and how the impact of PPI is captured or measured. Data sources. Seventeen key online databases and websites were searched, e.g. Medline and the King’s Fund. Study selection. UK studies from 1997 to 2009 which included service user involvement in NHS healthcare services. Date extraction. Key themes were identified and a narrative analysis was undertaken. Results of data synthesis. The review indicates that PPI has a range of impacts on healthcare services. There is little evidence of any economic analysis of the costs involved. A key limitation of the PPI evidence base is the poor quality of reporting impact. Few studies define PPI, there is little theoretical underpinning or conceptualization reported, there is an absence of robust measurement of impact and descriptive evidence lacked detail. Conclusion. There is a need for significant development of the PPI evidence base particularly around guidance for the reporting of user activity and impact. The evidence base needs to be significantly strengthened to ensure the full impact of involving service users in NHS healthcare services is fully understood.

In the UK, service user involvement is an important factor in health policy, and obtaining research funding. It may be helpful in expanding our knowledge in areas where research evidence is poor such as experiences of hospital discharge planning for the family carers of people with dementia. Methods: A rapid review. All study designs published in the English language were eligible for inclusion. Databases included: Medline, Embase, CINAHL, PsycInfo, Cochrane library and Web of Knowledge. A qualitative analysis was undertaken. Results: Four themes were identified: preparation for hospital discharge – dissatisfaction with being kept informed, discharge arrangements and management of conditions; little time to prepare. Communication between staff and families at discharge – insufficient communication regarding services, not being listened to and being undervalued as a resource could compromise post-discharge care. Support services post discharge – carers need help negotiating, and working with, services with regard to timing, and meeting requirements. Coping post hospital discharge – inadequate understanding about ability to cope, and patient's impairment, and family conflict over care may lead to unnecessary re-admission to hospital, or long term care. Evidence of specialist dementia models at discharge is described. Discussion: Carers are not always involved in hospital discharge planning as well as they might be. Issues are complex and depend on a number of factors. Poor communication can be overcome and carers can be better supported to cope post discharge as illustrated in the dementia models. The evidence base is weak but the absence of evidence does not indicate an absence of good practice. Conclusion: Carers who may feel their world is far removed from the academic world may not ordinarily participate in research studies. Service users, as co-researchers, may be able to improve trust and rapport between research and communities, collect fresh insights and gain deeper and more insightful data from participants.

Carers of people with MND may experience changes to their health and lifestyle. Statutory and voluntary organizations are able to support the carer in various ways. This review investigates the personal impact on carers and their experiences of service provision. A systematic search of online and grey literature was made for the period 1994-2004. Thirty-two key texts were retrieved and a narrative synthesis conducted. The main themes were: 1) Impact on carer: general health, emotional state, life satisfaction, socio-economic concerns, relationships, and protective factors; 2) Experience of service provision: primary care, health professionals, social care, written information, and voluntary organizations. There is a paucity of written documentation on the experience of assisting someone with MND. Data collected are diverse and sometimes contradictory. Sample sizes are often small and generalization difficult. Main findings show that maintenance of social support, activities, and a positive outlook may lessen the chance of ill health arising from long hours spent caring, and having a named coordinator may assist with access to resources, and provide practical and emotional support during and after the caring role. Carers may become ill themselves unless adequate support is given to them throughout the course of the disease.

Aims: To assess the effectiveness of a parenting programme, delivered by health visitors in primary care, in improving the mental health of children and their parents among a representative general practice population. Methods: Parents of children aged 2–8 years who scored in the upper 50% on a behaviour inventory were randomised to the Webster-Stratton 10 week parenting programme delivered by trained health visitors, or no intervention. Main outcome measures were the Eyberg Child Behaviour Inventory and the Goodman Strengths and Difficulties Questionnaire to measure child behaviour, and the General Health Questionnaire, Abidin's Parenting Stress Index, and Rosenberg's Self Esteem Scale to measure parents' mental health. These outcomes were measured before and immediately after the intervention, and at six months follow up. Results: The intervention was more effective at improving some aspects of the children's mental health, notably conduct problems, than the no intervention control condition. The Goodman conduct problem score was reduced at immediate and six month follow up, and the Eyberg Child Behaviour Inventory was reduced at six months. The intervention also had a short term impact on social dysfunction among parents. These benefits were seen among families with children scoring in the clinical range for behaviour problems and also among children scoring in the non-clinical (normal) range. Conclusion: This intervention could make a useful contribution to the prevention of child behaviour problems and to mental health promotion in primary care.

s / Resuscitation 85S (2014) S15–S121 S85 ECLS, PCI and hypothermia. A literature review of currently active programs for uDCDD. A SWOT (Strengths,Weaknesses, Opportunities, and Threats) matrix analysis was then performed Results: 1. The standard of treatment received and the chances of survival of victims of refractory CA depend on whether they are classified as still patients or potential donors 2. Selected patients whoreceivedECLS, PCI and/orhypothermia increased their survival chance 3. Victims of refractory CA who cannot benefit from any of these therapies and techniqueswouldbeeffectivepotential donors. Conclusions: Currently active uDCDD programs and protocols including recent improvements on resuscitation for refractory CA are compatible. Operational criteria to distinguish patients from potential donors should seek a balance between the technical imperative (to do whatever is possible), considerations about expected survival with quality of life, and costs/benefits. Uncontrolled DCDD programs can be performed in a way that does not hamper the legitimate interests of patients, potential organ donors, their families, the organ recipients, and the health professionals involved in these processes. http://dx.doi.org/10.1016/j.resuscitation.2014.03.210

Over the last decade there has been increasing emphasis on patient and public involvement in different aspects of healthcare activity in the UK and internationally [1, 2]. The importance of involving patients and the public in the re-design of a patient-focused healthcare system has become emphasized and strengthened by recent international health policy [3] and the implementation of recent UK legislation (e.g. Local Involvement Networks [4]). Equally, the imperative of patient and public involvement as a central feature of health services research is being emphasized by its integral role in many research funding programmes and initiatives in the UK (e.g. the Health Technologies Assessment [5]). Although the UK has experienced extensive patient and public involvement activity in the National Health Service, the international research evidence base underpinning this activity remains partial and lacks coherence. A range of difficulties exist, including poor conceptualization, variable and partial attempts at measurement, and the limited attention that has been placed on evaluating the impact or outcome of involvement [6,7]. Research in this area has often been found to be of poor quality [ …