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The article presents the research that investigates the expectations of patients and family members of new clinical methodologies in Great Britain. The topics discussed include the varied range of clinical innovative specialization showcased by the organization the Hospital NHS Foundation Trust and the importance of the perspectives of patients and their families in health care evaluation.

Purpose: To determine whether the forecasted assessment of how someone would feel in a future health state can be predictive of utilities (e.g. as elicited by the time‐trade‐off method) and also predictive of optimal decisions as determined by a decision‐analytic model. Methods: We elicited time‐trade‐off utilities for prostate cancer treatment outcomes from 168 men. We also elicited forecasted assessments, that is, an informal, non‐quantitative, descriptive evaluation, of impotence and incontinence from these men. We used multivariate regression analysis to explore the relationship between forecasted assessment and reluctance to trade length for improved quality of life, that is, the unwillingness to trade length of life for improved quality of life in the time‐trade‐off utility assessment and the relationship between the forecasted assessments and the optimal decision of whether to undergo screening for prostate cancer as determined from a previously published decision‐analytic model. Results: Importance of sexual function was strongly related to impotence utilities (P < 0.05). Based on the multivariate analysis, significant predictors for the utility of severe incontinence were family income, family history of prostate cancer, work status and attitude towards needing to wear an incontinence pad. However, no variables were statistically significant predictors for the utility of complete impotence. The importance of sexual functioning was a significant predictor of the optimal decision. Conclusion: Anticipated difficulty adjusting to adverse health effects were highly related to preferences and could be used as a proxy measure of utility. Similarly, the importance of sexual functioning, a future preference, was highly related to the optimal decision, which validates our previously published decision‐analytic model. [ABSTRACT FROM AUTHOR]

The article presents the randomized controlled study that explores on the effectiveness of development plan in improving the participation of patients in mental hospitals in Central Norway. The topics discussed include attributing factors of the failure of some development proposals, the advantages of user participation, and its implications on the experiences of patients.

Background: Patients’ experiences are an indicator of health‐care performance in the accident and emergency department (A&E). The Consumer Quality Index for the Accident and Emergency department (CQI A&E), a questionnaire to assess the quality of care as experienced by patients, was investigated. The internal consistency, construct validity and discriminative capacity of the questionnaire were examined. Methods: In the Netherlands, twenty‐one A&Es participated in a cross‐sectional survey, covering 4883 patients. The questionnaire consisted of 78 questions. Principal components analysis determined underlying domains. Internal consistency was determined by Cronbach's alpha coefficients, construct validity by Pearson's correlation coefficients and the discriminative capacity by intraclass correlation coefficients and reliability of A&E‐level mean scores (G‐coefficient). Results: Seven quality domains emerged from the principal components analysis: information before treatment, timeliness, attitude of health‐care professionals, professionalism of received care, information during treatment, environment and facilities, and discharge management. Domains were internally consistent (range: 0.67–0.84). Five domains and the ‘global quality rating’ had the capacity to discriminate among A&Es (significant intraclass correlation coefficient). Four domains and the ‘global quality rating’ were close to or above the threshold for reliably demonstrating differences among A&Es. The patients’ experiences score on the domain timeliness showed the largest range between the worst‐ and best‐performing A&E. Conclusions: The CQI A&E is a validated survey to measure health‐care performance in the A&E from patients’ perspective. Five domains regarding quality of care aspects and the ‘global quality rating’ had the capacity to discriminate among A&Es. [ABSTRACT FROM AUTHOR]

Background: Recent changes in the structure and policy context of Dutch health care have placed the issue of citizen participation high on the agenda of the Dutch Healthcare Inspectorate (IGZ), which conducts quality and safety reviews in medical practices and health‐care institutions. With a few exceptions, the potential role that citizens can play in the regulation of health‐care institutions is overlooked in research on patient/citizen participation in health care. Objective: This research addressed the following question: What are the (political) expectations for increasing citizen participation in health‐care regulation and how do these compare to regulators' expectations and experiences in practice? Design: Because of the largely explorative nature of this study, we used qualitative methods (document and web analysis, focus groups and interviews) to answer this question. Results: Our study shows that inspectors already have experience with participatory formats that lead to important information. There are three areas where the IGZ is currently increasing citizen participation: (i) providing individuals with information about inspectorate processes and activities, (ii) including patients as sources of information, and (iii) formally reviewing how citizen participation is ensured by health‐care institutions. In situations where the patient has the clearest overview of the whole care trajectory, intensive methods of participation deliver valuable information. Conclusions: It is important to target participation activities and to capitalize on existing opportunities and activities, rather than creating participation activities for the sake of participation. In this regard, further research on the effectiveness and efficacy of different participatory strategies is necessary. [ABSTRACT FROM AUTHOR]

Background Many Western countries have cervical cancer screening programmes and have implemented nation-wide human papillomavirus ( HPV) vaccination programmes for preventing cervical cancer. Objective To explore immigrant women's experiences and views on the prevention of cervical cancer, screening, HPV vaccination and condom use. Design An exploratory qualitative study. The Health Belief Model ( HBM) was used as a theoretical framework. Setting and participants Eight focus group interviews, 5-8 women in each group (average number 6,5), were conducted with 50 women aged 18-54, who studied Swedish for immigrants. Data were analysed by latent content analysis. Results Four themes emerged: (i) deprioritization of women's health in home countries, (ii) positive attitude towards the availability of women's health care in Sweden, (iii) positive and negative attitudes towards HPV vaccination, and (iv) communication barriers limit health care access. Even though the women were positive to the prevention of cervical cancer, several barriers were identified: difficulties in contacting health care due to language problems, limited knowledge regarding the relation between sexual transmission of HPV and cervical cancer, culturally determined gender roles and the fact that many of the women were not used to regular health check-ups. Conclusion The women wanted to participate in cervical cancer prevention programmes and would accept HPV vaccination for their daughters, but expressed difficulties in understanding information from health-care providers. Therefore, information needs to be in different languages and provided through different sources. Health-care professionals should also consider immigrant women's difficulties concerning cultural norms and pay attention to their experiences. [ABSTRACT FROM AUTHOR]

Objectives The purpose of this study was to investigate quality of life ( QOL) and attitudes to ageing in Turkish older adults at two old people's homes (nursing homes) and to explain relationship between QOL and attitudes to ageing. Methods This study is a quantitative and descriptive exploratory study of QOL and attitudes to ageing of older adults in nursing homes in a developing country. Instruments Two international data measurement tools were used for data collection. Data measurement instruments in this study are The World Health Organization Quality of Life Instrument- Older Adults Module ( WHOQOL- OLD) and the WHO - Attitudes to Ageing Questionnaire ( AAQ). The WHOQOL- OLD module consists of 24 items assigned to six facets (sensory abilities, autonomy, past, present and future activities, social participation, death and dying and intimacy) AAQ consists of 24 items classified in three domains (psychosocial loss, physical change and psychological growth) with eight items each. Participants The Turkish version of the WHOQOL- OLD and AAQ was administered to 120 older (>65 years) adults living in two old people's homes in Samsun Province, Turkey. This study was conducted and planned between on 1 November 2011 and on 31 November, 2011. Results The results indicated that there was significant relationship between QOL and attitudes to ageing of older adults. In this study, the highest significant relationship is between psychological growth subscale of attitudes to ageing and sensory abilities subscale of QOL ( r = 0.579; P < 0.01). Overall QOL and overall attitudes to ageing had a significant and positive relationship ( r = 0.408; P < 0.01). The dimensions of attitudes to ageing (psychosocial loss, physical change and psychological growth) were significant predictors for QOL in older adults in Turkey. It was found that the gender does not affect overall QOL in older adults. However, happiness is significant variable for overall QOL in this study. Conclusion The results suggest that QOL is a complex, multidimensional concept that should be studied at different levels of analysis in Turkey and other developing countries. The results of this study emphasize the importance of QOL in older adults in older people's homes in Turkey and attitudes to ageing of nursing home residents in Turkey. [ABSTRACT FROM AUTHOR]

Background Online communities are known to break down barriers between supposed experts and non-experts and to promote collaborative learning and 'radical trust' among members. Young people who self-harm report difficulties in communicating with health professionals, and vice versa. Aim We sought to bring these two groups together online to see how well they could communicate with each other about self-harm and its management, and whether they could agree on what constituted safe and relevant advice. Methods We allocated 77 young people aged 16-25 with experience of self-harm and 18 recently/nearly qualified professionals in relevant health-care disciplines to three separate Internet discussion forums. The forums contained different proportions of professionals to young people (none; 25%; 50% respectively) to allow us to observe the effect of the professionals on online interaction. Results The young people were keen to share their lived experience of self-harm and its management with health professionals. They engaged in lively discussion and supported one another during emotional crises. Despite registering to take part, health professionals did not actively participate in the forums. Reported barriers included lack of confidence and concerns relating to workload, private-professional boundaries, role clarity, duty of care and accountability. In their absence, the young people built a vibrant lay community, supported by site moderators. Conclusions Health professionals may not yet be ready to engage with young people who self-harm and to exchange knowledge and experience in an anonymous online setting. Further work is needed to understand and overcome their insecurities. [ABSTRACT FROM AUTHOR]

Background Despite pharmacists' extensive knowledge in the optimization of patients' medical treatments, community pharmacies are still fighting to earn patients' trust with respect to medicinal counselling at the counter. Objective The aim was to investigate how patients perceive pharmacy counselling at the present time, in order to develop the patient-pharmacy relationship for the benefit of both patients and pharmacies. Design Short semi-structured interviews were carried out with pharmacy customers by pharmacy internship students. Setting and participants One hundred and eight customers in 35 independent pharmacies across Denmark were interviewed during the spring of 2011. Main variables studied Customers were interviewed about their expectations of pharmacies in general and their experiences with medical counselling in particular. Results Customers perceive community pharmacies very differently in terms of both expectations of and positive experiences with counselling. They appear to be in favour of pharmacy counselling with respect to over-the-counter medicine and first-time prescription medicine in contrast to refills. Customers find it difficult to express the health-care role of pharmacies even when experiencing and appreciating it. Discussion Lack of appreciation of pharmacy counselling for refill prescription medicine and the difficulty in defining the role of pharmacies might stem from the difficulties that customers have in understanding medicine and thus the role of counselling services with respect to medicine. The pharmacy staff does not seem to realize these barriers. Conclusions For pharmacies to encourage customer interest in pharmacy counselling, the staff should start taking the identified barriers into account when planning communication strategies. [ABSTRACT FROM AUTHOR]

Background Inspired by American examples, several European countries are now developing disease management programmes (DMPs) to improve the quality of care for patients with chronic diseases. Recently, questions have been raised whether the disease management approach is appropriate to respond to patient-defined needs. Objective In this article we consider the responsiveness of current European DMPs to patients' needs defined in terms of multimorbidity, functional and participation problems, and self-management. Method Information about existing DMPs was derived from a survey among country-experts. In addition, we made use of international scientific literature. Results Most European DMPs do not have a solid answer yet to the problem of multimorbidity. Methods of linking DMPs, building extra modules to deal with the most prevalent comorbidities and integration of case management principles are introduced. Rehabilitation, psychosocial and reintegration support are not included in all DMPs, and the involvement of the social environment of the patient is uncommon. Interventions tailored to the needs of specific social or cultural patient groups are mostly not available. Few DMPs provide access to individualized patient information to strengthen self-management, including active engagement in decision making. Conclusion To further improve the responsiveness of DMPs to patients' needs, we suggest to monitor 'patient relevant outcomes' that might be based on the ICF-model. To address the needs of patients with multimorbidity, we propose a generic comprehensive model, embedded in primary care. A goal-oriented approach provides the opportunity to prioritize goals that really matter to patients. [ABSTRACT FROM AUTHOR]

Background Patients with chronic kidney disease ( CKD) are encouraged to make an informed decision about dialysis. Survival rates for dialysis are equivalent yet there is wide variation in peritoneal dialysis uptake in the adult UK population. It is unclear how much is attributable to variations in patients' preferences. Kidney function usually declines over months and years; few studies have addressed how a chronic illness context affects choice. This study describes patients' decision making about dialysis and understands how the experience of CKD is associated with treatment choice. Method Survey employing interview methods explored 20 patients' views and experiences of making their dialysis choice. Data were analysed using thematic framework analysis to provide descriptive accounts of how patients experienced their illness and made treatment decisions. Results Patients talked about challenges of living with CKD. Patients were provided with lots of information about treatment options in different formats. Patients did not distinguish between different types of dialysis and/or have an in-depth knowledge about options. Patients did not talk about dialysis options as a choice but rather as a treatment they were going to have. Conclusion Most patients perceived their choice as between 'dialysis' and 'no dialysis'. They did not perceive themselves to be making an active choice. Possibly, patients feel they do not need to engage with the decision until symptomatic. Despite lots of patient information, there were more opportunities to encounter positive information about haemodialysis. A more proactive approach is required to enable patients to engage fully with the dialysis treatment options. [ABSTRACT FROM AUTHOR]

Background The Institute of Medicine recently recommended that comparative effectiveness research (CER) should involve input from consumers. While systematic reviews are a major component of CER, little is known about consumer involvement. Objective To explore current approaches to involving consumers in US-based and key international organizations and groups conducting or commissioning systematic reviews ('organizations'). Design In-depth, semi-structured interviews with key informants and review of organizations' websites. Setting and participants Seventeen highly regarded US-based and international (Cochrane Collaboration, Campbell Collaboration) organizations. Results Organizations that usually involve consumers (seven of 17 in our sample) involve them at a programmatic level in the organization or in individual reviews through one-time consultation or on-going collaboration. For example, consumers may suggest topics, provide input on the key questions of the review, provide comments on draft protocols and reports, serve as co-authors or on an advisory group. Organizations involve different types of consumers (individual patients, consumer advocates, families and caregivers), recruiting them mainly through patient organizations and consumer networks. Some offer training in research methods, and one developed training for researchers on how to involve consumers. Little formal evaluation of the effects of consumer involvement is being carried out. Conclusions Consumers are currently involved in systematic reviews in a variety of ways and for various reasons. Assessing which approaches are most effective in achieving different aims of consumer involvement is now required to inform future recommendations on consumer involvement in CER. [ABSTRACT FROM AUTHOR]

Background In recent years, patient-focused interventions have been introduced aimed at increasing patient involvement in safety-related behaviours. However, patients' attitudes towards these interventions and comfort in participating in the recommended behaviours remain largely unexplored. Objective To evaluate patients' attitudes towards a video and leaflet aimed at encouraging patient involvement in safety-related behaviours. Design Two exploratory studies employing a within-subjects mixed-methods design. Setting Six hospital wards on an inner-city London teaching hospital. Participants Medical and surgical inpatients: 80 patients in study 1 (mean age 55; 69% men) and 80 patients in study 2 (mean age 52; 60% men). Intervention Patients watched the PINK patient safety video (study 1) or read the National Patient Safety Agency's 'Please Ask' about staying in hospital leaflet (study 2). Main outcome measures Perceived comfort in participating in safety-related behaviours; attitudes towards the video or leaflet. Results Both video and leaflet increased patients' perceived comfort in engaging in some (but not all) safety-related behaviours ( P < 0.05). In both studies, the majority of patients questioned whether the intervention could help to reduce medical errors in health care. Suggestions on how the video/leaflet could be improved mainly related to content and layout. Conclusion Video and leaflet could be effective at encouraging patient involvement in some safety-related behaviours. Further in-depth research on patients' attitudes towards different educational materials is required to help inform future policies and interventions in this very important but under-researched area. [ABSTRACT FROM AUTHOR]

Background Communicating bad news serves different goals in health care, and the extent to which physicians and patients agree on the goals of these conversations may influence their process and outcomes. However, we know little about what goals physicians and patients perceive as important and how the perceptions of physicians and patients compare. Objective To compare physicians' and patients' perceptions of the importance of different communication goals in bad news conversations. Design Survey-based descriptive study. Participants Physicians in California recruited via a medical board mailing list ( n = 67) and patients ( n = 77) recruited via mailing lists and snowball recruitment methods. Measurements Physicians reported their experience communicating bad news, the extent to which they strive for various goals in this task and their perceptions of the goals important to patients. Patients reported their experience receiving bad news, the goals important to them and their perceptions of the goals important to physicians. Main results Physicians and patients were quite similar in how important they personally rated each goal. However, the two groups perceived differences between their values and the values of the other group. Conclusions Physicians and patients have similar perceptions of the importance of various goals of communicating bad news, but inaccurate perceptions of the importance of particular goals to the other party. These findings raise important questions for future research and clinical practice. [ABSTRACT FROM AUTHOR]

Background An increasing array of rare inherited conditions can be detected as part of the universal newborn screening programme. The introduction and evaluation of these service developments require consideration of the ethical issues involved and appropriate mechanisms for informing parents and gaining consent if required. Exploration of parental views is needed to inform the debate and specifically consider whether more flexible protocols are needed to fit with the public perception of new developments in this context. Objective This study has been undertaken to explore perceptions and attitudes of parents and future parents to an expanded newborn screening programme in the United Kingdom and the necessary information provision and consent processes. Design and participants A mixed methods study involving focus groups ( n = 29) and a web-survey ( n = 142) undertaken with parents and future parents. Results and conclusions Parents want guaranteed information provision with clear decision-making powers and an awareness of the choices available to them. The difference between existing screening provision and expanded screening was not considered to be significant enough by participants to warrant formal written, informed consent for expanded screening. It is argued that the ethical review processes need to be more flexible towards the provision of information and consent processes for service developments in newborn screening. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses articles in the issue on topics including Raynor and colleagues describe an experience-based co-design (EBCD) process, and Berzins and colleagues report a qualitative study.

Experts estimate that the prevalence of antibiotics use exceeds the prevalence of bacterial acute respiratory infections (ARIs). To develop, adapt and validate DECISION+ and estimate its impact on the decision of family physicians (FPs) and their patients on whether to use antibiotics for ARIs. Two-arm parallel clustered pilot randomized controlled trial. Four family medicine groups were randomized to immediate DECISION+ participation (the experimental group) or delayed DECISION+ participation (the control group). Thirty-three FPs and 459 patients participated. DECISION+ is a multiple-component, continuing professional development program in shared decision making that addresses the use of antibiotics for ARIs. Throughout the pilot trial, DECISION+ was adapted in response to participant feedback. After the consultation, patients and FPs independently self-reported the decision (immediate use, delayed use, or no use of antibiotics) and its quality. Agreement between their decisional conflict was assessed. Two weeks later, patients assessed their decisional regret and health status. Compared to the control group, the experimental group reduced its immediate use of antibiotics (49 vs. 33% absolute difference = 16%; P = 0.08). Decisional conflict agreement was stronger in the experimental group (absolute difference of Pearson's r = 0.26; P = 0.06). Decisional regret and perceptions of the quality of the decision and of health status in the two groups were similar. DECISION+ was developed successfully and appears to reduce the use of antibiotics for ARIs without affecting patients' outcomes. A larger trial is needed to confirm this observation. [ABSTRACT FROM AUTHOR]

The objective was to determine if participants' strength-of-preference scores for elective health care interventions at the end-of-life (EOL) elicited using a non-engaging technique are affected by their prior use of an engaging elicitation technique. Medicare beneficiaries were randomly selected from a larger survey sample. During a standardized interview, participants considered four scenarios involving a choice between a relatively less- or more-intense EOL intervention. For each scenario, participants indicated their favoured intervention, then used a 7-point Leaning Scale (LS1) to indicate how strongly they preferred their favoured intervention relative to the alternative. Next, participants engaged in a Threshold Technique (TT), which, depending on the participant's initially favoured intervention, systematically altered a particular attribute of the scenario until the participant switched preferences. Finally, they repeated the LS (LS2) to indicate how strongly they preferred their initially-favoured intervention. Two hundred and two participants were interviewed (189-198 were included in this study). The concordance of individual participants' LS1 and LS2 scores was assessed using Kendall tau-b correlation coefficients; scores of 0.74, 0.84, 0.85 and 0.89 for scenarios 1-4, respectively, were observed. Kendall tau-b statistics indicate a high concordance between LS scores, implying that the interposing engaging TT exercise had no significant effects on the LS2 strength-of-preference scores. Future investigators attempting to characterize the distributions of strength-of-preference scores for EOL care from a large, diverse community could use non-engaging elicitation methods. The potential limitations of this study require that further investigation be conducted into this methodological issue. [ABSTRACT FROM AUTHOR]

Objective To use semi-structured interviews to ascertain patterns in patients’ expectations of health care and the extent to which these expectations were met or not. Background In health policy it is important to evaluate health services from varying perspectives including consumers’. One concept of emerging importance in this regard is that of patient expectations. Whether expectations are met or not have been found to be related to general patient satisfaction with treatment and treatment compliance. However, there is conceptual and methodological uncertainty and little informing empirical work regarding what is an ‘expectation’ and how it should be measured. Design A qualitative study using semi-structured interviews to elicit 20 GP patients’ expectations prior to their consultation. A post consultation interview gauged the extent to which these expectations had been met. Setting and participant Twenty patients of a GP practice in Norfolk (UK). Results Results suggest several different expectations, concerned with the doctor-patient interaction, the specific processes of the consultation, outcomes, and issues to do with time and space. Conclusions This research has used an innovative exploratory approach to address the expectations of GP patients and has implications for how doctors ought to manage their consultations. These results will be used to inform the development of a quantitative expectations questionnaire so as to develop a validated measure of expectations. Such an instrument has great potential to aid in health care research and practice. [ABSTRACT FROM AUTHOR]

Background Health researchers are encouraged to involve service users as partners in their research. There is a need to increase the evidence base of involvement, including an accumulation of empirical accounts of involvement practices, demonstrating how involvement influences research and refinement of the concept itself. Aims To report the development of a pilot study by academic researchers and stroke service users belonging to a user research group to investigate costs of stroke to individuals and families; to reflect on what this example of user involvement achieved and implications for what involvement means. Methods We conducted a 2-year ethnographic study that included participant observation, formal and informal interviews with professionals and user group members and documentary analysis. Data were systematically recorded to permit description of processes and reflexive analysis. Results and conclusions We report on five stages of the research process from service user identification of a research question to interpretation of pilot study findings. Professional researchers led the research process and developed a novel method to involve stroke service users in the development of a questionnaire. Some academic colleagues questioned the value of the proposed investigation as it did not appear to conform to implicit criteria of quality research. We argue that the moral status that user involvement has acquired means that academics’ concerns about quality did not prevent the pilot study from being conducted. We suggest that much of what was undertaken might be considered standard good practice in developing new research studies but also identify additional benefits of user involvement. Implications for conceptual development and evaluation are discussed. [ABSTRACT FROM AUTHOR]

Background Adolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation of services or in research. Little is known about the usefulness of the participatory approach in adolescent health research. Objective To evaluate the feasibility, benefits and limitations of a participatory research (PR) project involving chronically ill adolescents as co-researchers. Design, setting and participants Nine adolescents, aged 15–17 years, acted as co-researchers in a hospital-based PR project. They co-developed an interview protocol and during a disco party held for this purpose interviewed each other and 25 fellow patients (12–19 years). They provided advice on the draft report and participated in the dissemination of the results, but were not involved in the design of the project or analysis of results. Results Involving adolescents in participatory health research was feasible and appreciated by researchers and youth alike, but had its drawbacks too. The peer-research attracted few participants, the interviews lacked depth and did not yield substantial new insights. Maintaining a high level of participation of the chronically ill co-researchers also proved difficult. Conclusions Adolescents with chronic conditions like to have a say in the design and evaluation of hospital services. But their participation as co-researchers demands ample resources from all parties involved without automatically improving research quality. PR does not seem the most effective and efficient way to make services more responsive. We therefore recommend further exploration of other creative and sustainable ways for involving youth in health-care service development and innovation. [ABSTRACT FROM AUTHOR]

Aim This article explores the involvement of older people in research and inspection, reflecting on the learning from the recent ‘joint review’ of the National Service Framework for Older People in England. Methodological context Working in 10 different localities, the ‘joint review’ comprised a formal inspection of health and local council services (carried out by the Healthcare Commission, Commission for Social Care Inspection and the Audit Commission) and an externally commissioned university-led research project designed to ascertain the views and experiences of older people living in the 10 inspection sites. In total, 1839 older people were interviewed individually and through focus groups and an additional 4200 older people completed questionnaires. A distinctive feature of the research was the inclusion of a team of older researchers who had undertaken training in research methods in later life. Reflections of the older researchers and other members of the research team on undertaking this large-scale user involvement project were ascertained via a day-long seminar which was tape recorded and transcribed. Learning While many espouse the principle of ‘service user involvement’ in research, there is a need to move beyond the rhetoric of participation and any blanket assumptions about what it means to be an ‘older researcher’, a ‘service user researcher’ or indeed, a ‘professional researcher’. This means ensuring that within any given team (user-controlled or collaborative) there are clear lines of accountability and equal opportunities for individual appraisal, support, and personal or professional development. Such considerations are key to working with ‘older researchers’ and encouraging diversity in the research workforce more generally. [ABSTRACT FROM AUTHOR]

Introduction Patient and public involvement is the cornerstone of the ‘patient-led’ National Health Service (NHS). Though the UK has had state sponsored arrangements for patient and public involvement since 1974, they have become fragmented and unstable. Patients’ forums and the Commission for Patient and Public Involvement in Health replaced community health councils (CHCs) and their national association in England in 2003, but now will be replaced by local involvement networks (LINks) and the Commission will be abolished in 2007. Learning from history This study provides an overview of research on the effectiveness of arrangements for patient and public involvement and reviews the debates about accountability, independence, ensuring consistency of performance, representation and how arrangements for the NHS fit within the wider agenda of citizenship and renewal of democracy. It explores key themes and areas for learning to inform the debate about how LINks might work effectively to improve the health of local people, in particular addressing issues of equity, representation and citizen engagement. Conclusions The proposed LINks provide the opportunity to integrate patient and public involvement into wider initiatives for local democracy and citizen engagement. But debates and key issues about user and public involvement in the 1970s remain current and unresolved. If the new LINks are to succeed where forums and CHCs are considered to have failed, the strengths and weakness of both need to be understood and addressed. [ABSTRACT FROM AUTHOR]

Objective To involve users in the development of a research bid to examine parents’ experiences of having a pre-term baby, and to examine the barriers, enablers and impacts of user involvement. Design A mainly collaborative approach to user involvement was adopted, although different types of involvement were evident at different stages of the project. Users’ experiences and perspectives provided the focus for the regular meetings which underpinned the writing of the research bid. The researcher acted as a facilitator in the development of the bid, with input from users and the wider advisory group. Main outcomes User involvement had an important impact on the development of the research aims, methods and on ethical aspects. Through careful collaboration a research bid was produced which was rooted in users’ experiences, whilst also addressing key research questions. Key enablers for involvement included good working relationships, funding for the lead researchers time. Barriers included lack of financial support for users, the time-consuming nature of involvement and the language of research. Conclusions If user involvement remains an international policy imperative with little if any support at the vital stage of bid development, policy-makers, service user organizations, researchers, health service providers and commissioners will need to recognize the limited nature of involvement that may result and the impact this would have on the evidence base. Researchers will need to recognize the resource implications of involvement at this point, and user groups will need to decide whether to participate when there is the greatest chance of influencing research but little or no funding. [ABSTRACT FROM AUTHOR]

Objective To develop and pilot two computer-based decision aids to assist women with decision-making about mode of delivery after a previous caesarean section (CS), which could then be evaluated in a randomized-controlled trial. Background Women with a previous CS are faced with a decision between repeat elective CS and vaginal birth after caesarean. Research has shown that women may benefit from access to comprehensive information about the risks and benefits of the delivery options. Design A qualitative pilot study of two novel decision aids, an information program and a decision analysis program, which were developed by a multidisciplinary research team. Participants and setting 15 women who had recently given birth and had previously had a CS and 11 pregnant women with a previous CS, recruited from two UK hospitals. Women were interviewed and observed using the decision aids. Results Participants found both decision aids useful and informative. Most liked the computer-based format. Participants found the utility assessment of the decision analysis program acceptable although some had difficulty completing the tasks required. Following the pilot study improvements were made to expand the program content, the decision analysis program was accompanied by a training session and a website version of the information program was developed to allow repeat access. Conclusions This pilot study was an essential step in the design of the decision aids and in establishing their acceptability and feasibility. In general, participating women viewed the decision aids as a welcome addition to routine antenatal care. A randomized trial has been conducted to establish the effectiveness and cost-effectiveness of the decision aids. [ABSTRACT FROM AUTHOR]

Objective There exists little research about the experience of breast cancer for young women in Canada. To address this gap, the Canadian Breast Cancer Network (CBCN) and the Ontario Breast Cancer Community Research Initiative undertook a research project to explore the information and support experiences, needs and recommendations of geographically diverse Canadian young women with breast cancer. Setting and participants We consulted with 65 young women in 10 focus groups held across Canada. All women had been diagnosed with breast cancer at, or before, 45 years of age. During the consultations the women were asked to discuss their information and support experiences and needs, as well as resource recommendations related to their diagnosis, treatment and survivorship. Main results The overarching theme, ‘Nothing Fit Me’, revealed that accessed information, support and programmes/services did not ‘fit’ or match the women's age or life stage. When we asked for their recommendations the young women suggested that information and support match their age and life stage and that health-care providers create and implement several topical workshops concerning, for example, sexuality, lymphedema and reconstruction. Conclusion The findings will be used by the CBCN as a general platform from which to conduct further research and/or action strategies. The CBCN will also implement the recommendations from this groundbreaking work as this network formulates a national strategy for young women with breast cancer. [ABSTRACT FROM AUTHOR]

Over the past four decades, there has been a widespread movement to increase the involvement of patients and the public in health care. Strategies to effectively foster consumer participation are occurring within all research activities from research priority setting to utilization. One of the ten principles of the Cochrane Collaboration is to ‘enable wide participation’, and this includes consumers. The Cochrane Musculoskeletal Group (CMSG) is a review group of 50 within the Collaboration that has been working to increase consumer participation since its inception in 1993. Based in Canada, the CMSG has embraced the concept of knowledge translation as advocated by the Canadian Institutes of Health Research. The emphasis in knowledge translation is on interactions or partnerships between researchers and users to facilitate the use of relevant research in decision making. While the CMSG recognizes the importance of reaching all users, much of its work has focused on developing relationships with people with musculoskeletal diseases to enhance consumer participation in research. The CMSG has built a network of consumer members who guide research priorities, peer review systematic reviews and also promote and facilitate consumer-appropriate knowledge dissemination. Consumers were recruited through links with other arthritis organizations and the recruitment continues. Specific roles were established for the consumer team and responsibilities of the CMSG staff developed. The continuing development of a diversified team of consumer participants enables the CMSG to produce and promote access to high quality relevant systematic reviews and summaries of those reviews to the consumer. [ABSTRACT FROM AUTHOR]

To describe and discuss key findings from a recent research project that challenge an increasingly prevalent theme, apparent in both family-centred care research and practice, of conceptualizing family-centred care as shifting care, care management, and advocacy responsibilities to families. The purpose of the research, from which these findings emerged, was to develop a conceptualization of family-centred care grounded in the experiences of families and direct health-care providers.Qualitative research methods, following the grounded theory tradition, were used to develop a conceptual framework that described the dimensions of the concept of family-centred care and their interrelationships, in the substantive area of children's developmental services. This article reports on and extends key findings from this grounded theory study, in light of current trends in the literature.The substantive area that served as the setting for the research was developmental services at a children's hospital in Alberta, Canada. Data was collected through focus groups and individual interviews with 37 parents of children diagnosed with a developmental problem and 16 frontline health-care providers.Key findings from this research project do not support the current emphasis in family-centred care research and practice on conceptualizing family-centred care as the shifting of care, care management, and advocacy responsibilities to families. Rather, what emerged was that parents want to work truly collaboratively with health-care providers in making treatment decisions and on implementing a dynamic care plan that will work best for child and family.A definition of collaboration is provided, and the nature of collaborative relationships described. Contributing factors to the difficulty in establishing true collaborative relationships between families and health-care professionals, where the respective roles to be played by health-care professionals and families are jointly determined, are discussed. In light of these findings we strongly advocate for the re-examination of current family-centred care policy and practice. [ABSTRACT FROM AUTHOR]

Relatively little research has been carried out on the health and supportive care needs of rural women living with breast cancer. In this study, results from a Canadian focus group study are used to highlight issues of importance to rural women. A total of 276 rural women with breast cancer divided into 17 focus groups participated in the study conducted across Canada . A standardized protocol for discussion was employed. Issues of access to information, support and services were discussed, with women describing their experiences in trying to find appropriate programmes and services. The major theme identified through analysis of qualitative data was ‘becoming aware of and/or gaining access to health care information, support and services.’ Other major themes included: (1) dealing with isolation; (2) having to travel; (3) feeling the financial burden and (4) coping with changing work. Rural women with breast cancer have supportive care challenges related to their circumstances. A series of recommendations were generated through the consultation process which are contributing to the development of a national strategy focusing on the development and extension of programmes for rural women with breast cancer. Although the research on the project was not to specified standards, and suffered from less attention than community capacity building and advocacy, it proved to be of worth and revealed potential benefits from collaborations between researchers and community organizations . [ABSTRACT FROM AUTHOR]

To show breast cancer patient involvement in the design of a national randomized trial of hormone replacement therapy (HRT) in symptomatic patients will increase accrual. Three stakeholder groups [(1) researchers from the Lynda Jackson Macmillan Centre, (2) the Consumers’ Advisory Group for Clinical Trials (CAG-CT), (3) clinicians responsible for a pilot randomized HRT study in breast cancer patients] developed this collaborative study. (1) Nine focus group discussions were conducted to identify issues relevant to breast cancer patients about HRT and a national trial: six involved women from breast cancer support groups nationwide and three patients who had previously participated in the pilot randomized HRT study. (2) Recommendations from the focus groups (analysed by Grounded Theory) were debated by the research stakeholders and focus group representatives at a 1-day meeting and consensus reached (using a voting system) on mutual priorities for incorporation into the design of a national HRT trial. (3) Representatives from the CAG-CT and focus groups participated in subsequent national HRT steering committee meetings to ensure that these priorities were accounted for and the resulting trial design summary was circulated to the CAG-CT and all focus group representatives for comment. Focus groups demonstrated that the complexity of factors relating to trial participation was not just restricted to the research topic in question. Patient–clinician interaction provided a platform for negotiating potential conflicts over trial design and outcomes. Patient feedback suggested that mutually agreed priorities were accounted for in the trial design. Clinical research planning should involve all research stakeholders at the outset. Quantifying the impact of patient involvement in terms of trial accrual may be too simple given the complexity of their motivations for participating in trials. [ABSTRACT FROM AUTHOR]