Health expectations: an international journal of public participation in health care and health policy

Publisher: Blackwell Publishing

Description

Do patients want to participate in treatment decisions? What is the best way to determine the views of health service users? What can governments do to engage citizens in setting priorities? What factors influence the demand for health care?Health Expectations aims to promote critical thinking and informed debate about all aspects of public participation in health care and health policy, including: involvement of patients and their advocates in decisions about individual health care; involvement of health service users and their representatives in aspects of service design, delivery and evaluation; involvement of the general public in debates about health care policy.

Impact factor 1.80

  • 5-year impact
    0.00
  • Cited half-life
    5.60
  • Immediacy index
    0.68
  • Eigenfactor
    0.00
  • Article influence
    0.77
  • Website
    Health Expectations website
  • Other titles
    Health expectations (Online)
  • ISSN
    1369-7625
  • OCLC
    45266670
  • Material type
    Document, Periodical, Internet resource
  • Document type
    Internet Resource, Computer File, Journal / Magazine / Newspaper

Publisher details

Blackwell Publishing

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    • 'Blackwell Publishing' is an imprint of 'Wiley'
  • Classification
    ​ yellow

Publications in this journal

  • Health expectations: an international journal of public participation in health care and health policy 02/2015; 18(1):1-2.
  • Anne-Claire Stona, Charles Berrang, Honorine Santerre, Nathalie Georges, Rosa Chimenti, René Kneip, Laurence Fond-Harmant
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    ABSTRACT: In 2013, between 150 and 200 people per night in the Grand Duchy of Luxembourg are estimated roofless. Abilities to respond to emergencies in the GDL are perceptibly decreased due to longer stays in emergency shelters. This study aimed to analyse the needs of long-term homeless (LTH) individuals and to put forward professional recommendations to improve support and care for homeless individuals. A local, cross-sectional, qualitative study carried out between February and September 2013 in the GDL. Semi-structured interviews and focus groups were conducted with homeless people living in Caritas housing facilities permanently over a period of 2 years or temporarily over a period of 3 years, as well as Caritas professionals and Luxembourgish psychiatrists. They mainly focused on the homeless person's life pathways, needs and expectations, and difficulties encountered. Twenty-two homeless persons, 13 professionals from Caritas and three Luxembourgish psychiatrists participated. Homeless persons' needs and expectations consist of the following: (i) seeking freedom and peacefulness, (ii) having their own space, being independent and (iii) living like everyone else. Professionals mainly complained about difficulties for supporting LTH persons and the lack of collaboration with Luxembourg stakeholders from social and psychiatric departments. This study has found that the current approach is not appropriate for the management of LTHness in the country. This study recommends changes within the Caritas facilities and outside, on the basis of three concepts: (i) a decent home as an essential need, (ii) respect of freedom of choice and (iii) a housing-first model. © 2015 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 01/2015;
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    ABSTRACT: Maternal obesity [body mass index (BMI) ≥ 30 kg/m(2) ] is associated with numerous complications, but currently, little is known about the pregnancy experiences of these women. To gain insight into the experience of pregnant women with BMI ≥ 30 kg/m(2) , when accessing maternity services and attending a community lifestyle programme. Qualitative methodology, utilizing focus groups and semi-structured interviews with post-natal women who had an antenatal BMI ≥ 30 kg/m(2) . The sample was obtained from a larger study. Thirty-four women participated. Three main themes were identified using thematic analysis. Women described disappointment with their pregnancy. In particular, their informational expectations were not met; some health professionals appeared uninterested, insensitive or unconfident. Women described readiness to make a lifestyle change, but this was not encouraged during routine care. Attending the programme began the process of behavioural change. Women's beliefs that small changes make a big difference led to them being spurred on by success; driven by a desire to improve the health of their family. Pregnant women who are obese know this is the case and expect to be provided with information to assist them in making lifestyle changes. Health professionals should be aware of women's readiness for change and view pregnancy as an ideal time to communicate. Pregnant women with a BMI ≥ 30 kg/m(2) should contribute to health professional training, to highlight the reality of the maternity system journey; first-hand accounts may improve the way health professionals' approach these women. Lifestyle interventions should be developed with input from the intended target group. © 2015 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 01/2015;
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    ABSTRACT: Background Subjective survival probabilities (SSPs) are considered relevant in relation to lifestyle as lifestyle improvements may improve health and lower mortality risk.Objective To study individuals' SSP in a population of elderly (i.e. 60 years and older) from 15 European countries.Methods Data from the second wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were used. Individuals were asked about their chances to live up to age [T] or more. These SSPs were related to general characteristics, health and lifestyle. In addition, cross-country comparisons were made. The validity of the probabilistic elicitation format used for collecting SSPs was also addressed.ResultsThe average subjective probability of surviving the next 9–15 years was around 57%. Mean SSPs varied significantly across age, with lower means at higher ages. Cross-country comparisons showed lowest mean in the Czech Republic (42%) and the highest in Denmark (64%). SSPs correlated with socio-demographic, socio-economic and also strongly with (objective) health characteristics except for obesity. Smokers reported significantly lower SSPs compared to non-smokers, but no difference was found between non-smokers and quitters. Excessive alcohol consumers reported significantly higher SSPs than moderate consumers and abstainers, but this only held for female excessive drinkers. Physical inactivity was negatively associated with SSPs, but this relation was attenuated at higher ages. In this context, important cross-country differences were found.Conclusions Subjective survival probabilities are informative and relevant in relation to lifestyle decisions and can be validly obtained in elder people. The results from this study provide interesting implications for health policy, health communication strategies and future research.
    Health expectations: an international journal of public participation in health care and health policy 01/2015;
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    ABSTRACT: Background Chlamydia trachomatis is one of the most frequently reported sexually transmitted infections (STI) in Australia, the UK and Europe. Yet, rates of screening for STIs remain low, especially in younger adults.Objective To assess effectiveness of Chlamydia screening interventions targeting young adults in community-based settings, describe strategies utilized and assess them according to social marketing benchmark criteria.Search strategyA systematic review of relevant literature between 2002 and 2012 in Medline, Web of Knowledge, PubMed, Scopus and the Cumulative Index to Nursing and Allied Health was undertaken.ResultsOf 18 interventions identified, quality of evidence was low. Proportional screening rates varied, ranging from: 30.9 to 62.5% in educational settings (n = 4), 4.8 to 63% in media settings (n = 6) and from 5.7 to 44.5% in other settings (n = 7). Assessment against benchmark criteria found that interventions incorporating social marketing principles were more likely to achieve positive results, yet few did this comprehensively. Most demonstrated customer orientation and addressed barriers to presenting to a clinic for screening. Only one addressed barriers to presenting for treatment after a positive result. Promotional messages typically focused on providing facts and accessing a testing kit. Risk assessment tools appeared to promote screening among higher risk groups. Few evaluated treatment rates following positive results; therefore, impact of screening on treatment rates remains unknown.DiscussionFuture interventions should consider utilizing a comprehensive social marketing approach, using formative research to increase insight and segmentation and tailoring of screening interventions. Easy community access to both screening and treatment should be prioritized.
    Health expectations: an international journal of public participation in health care and health policy 01/2015;
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    ABSTRACT: Background Social media is an increasingly dominant platform for communication, especially among adolescents. Statements from professional bodies and a growing body of empirical evidence support a role for social media in improving provider–patient interactions. In psychiatry, particular concerns exist about the suitability of this style of communication. Very limited data are available exploring how patients would like to incorporate social media into their communication with their psychiatric providers.Methods We conducted a qualitative study with 20 adolescents attending the Yale Psychiatric Hospital Intensive Outpatient Programme. Interviews were analysed using inductive thematic analysis.ResultsParticipants highlighted how social media could allow for constant access to a mental health provider, provide a less anxiety-provoking mode of communication, and allow for them to be monitored in a more on-going fashion. However, participants also identified many potential risks associated with these applications, including the potential for anxiety if a provider was not able to respond immediately, and a sense that online interactions would be less rich overall.DiscussionOur findings suggest that adolescents are open to the idea of communicating with mental health providers over social media and are able to describe a number of instances where this could be of value. The risks participants described, as well as concerns raised by existing literature, indicate the need for further work and protocol development in order for social media to be a feasible tool for communication between providers and adolescents with psychiatric illness.
    Health expectations: an international journal of public participation in health care and health policy 01/2015;
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    ABSTRACT: Background Telemedicine can facilitate delivery of thrombolysis in acute stroke. The aim of this qualitative study was to explore patients’ and carers’ views of their experiences of using a stroke telemedicine system in order to contribute to the development of reliable and acceptable telemedicine systems and training for health-care staff.Method We recruited patients who had, and carers who were present at, recent telemedicine consultations for acute stroke in three hospitals in NW England. Semi-structured interviews were conducted using an interview guide based on normalization process theory (NPT). Thematic analysis was undertaken.ResultsWe conducted 24 interviews with 29 participants (16 patients; 13 carers). Eleven interviews pertained to ‘live’ telemedicine assessments (at the time of admission); nine had mock-up telemedicine assessments (within 48 h of admission); four had both assessments. Using the NPT domains as a framework for analysis, factors relating to coherence (sense making) included people's knowledge and understanding of telemedicine. Cognitive participation (relational work) included interaction between staff and with patients and carers. Issues relating to collective action (operational work) included information exchange and support, and technical matters. Findings relating to reflexive monitoring (appraisal) included positive and negative impressions of the telemedicine process, and emotional reactions.Conclusion Although telemedicine was well accepted by many participants, its use added an additional layer of complexity to the acute stroke consultation. The ‘remote’ nature of the consultation posed challenges for some patients. These issues may be ameliorated by clear information for patients and carers, staff interpersonal skills, and teamworking.
    Health expectations: an international journal of public participation in health care and health policy 01/2015;
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    ABSTRACT: Background Health system reform is directed towards better management of diabetes. However, change can be difficult, and patients’ perspectives are a key aspect of implementing change.Objective This study investigated patients’ perceptions and experiences of type 2 diabetes (T2DM), self-care and engagement with GP-led integrated diabetes care.DesignQualitative interviews were conducted with purposively selected patients with T2DM following their initial medical appointment in the new model of care. Normalization process theory was used to orientate the thematic analysis, to explain the work of implementing change.SettingTwo specialist GP-based complex diabetes services in primary care in Brisbane, Australia.ParticipantsIntervention group patients (n = 30) in a randomized controlled trial to evaluate a model of GP-led integrated care for complex T2DM.Main outcome measuresParticipants’ experiences and perceptions of diabetes management and a GP-led model of care.ResultsThree themes were identified: sensibility of change, ‘diabetic life’ and diabetes care alliance. The imperative of change made sense, but some participants experienced dissonance between this rational view and their lived reality. Diabetes invaded life, revealing incongruities between participants’ values and living with diabetes. They appreciated a flexible and personalized approach to care.DiscussionParticipants responded to advice in ways that seemed rational within the complexities of their life context. Their diabetes partnerships with health professionals coupled providers’ biomedical expertise with patients’ contextual expertise.Conclusions Learning to manage relationships with various health professionals adds to patients’ diabetes-related work. Providers need to adopt a flexible, interactive approach and foster trust, to enable better diabetes care.
    Health expectations: an international journal of public participation in health care and health policy 01/2015;
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    ABSTRACT: Background Understanding the important factors for choosing a general practitioner (GP) can inform the provision of consumer information and contribute to the design of primary care services.Objective To identify the factors considered important when choosing a GP and to explore subgroup differences.DesignAn online survey asked about the respondent's experience of GP care and included 36 questions on characteristics important to the choice of GP.ParticipantsAn Australian population sample (n = 2481) of adults aged 16 or more.Methods Principal components analysis identified dimensions for the creation of summated scales, and regression analysis was used to identify patient characteristics associated with each scale.ResultsThe 36 questions were combined into five scales (score range 1–5) labelled: care quality, types of services, availability, cost and practice characteristics. Care quality was the most important factor (mean = 4.4, SD = 0.6) which included questions about technical care, interpersonal care and continuity. Cost (including financial and time cost) was also important (mean = 4.1, SD = 0.6). The least important factor was types of services (mean = 3.3, SD = 0.9), which covered the range of different services provided by or co-located with the practice. Frequent GP users and females had higher scores across all 5 scales, while the importance of care quality increased with age.Conclusions When choosing a GP, information about the quality of care would be most useful to consumers. Respondents varied in the importance given to some factors including types of services, suggesting the need for a range of alternative primary care services.
    Health expectations: an international journal of public participation in health care and health policy 01/2015;
  • Andrew Hale, Ian Coombes, Julie Stokes, Stuart Aitken, Fiona Clark, Lisa Nissen
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    ABSTRACT: Background Pharmacist prescribing has been introduced in several countries and is a possible future role for pharmacy in Australia.Objective To assess whether patient satisfaction with the pharmacist as a prescriber, and patient experiences in two settings of collaborative doctor-pharmacist prescribing may be barriers to implementation of pharmacist prescribing.DesignSurveys containing closed questions, and Likert scale responses, were completed in both settings to investigate patient satisfaction after each consultation. A further survey investigating attitudes towards pharmacist prescribing, after multiple consultations, was completed in the sexual health clinic.Setting and ParticipantsA surgical pre-admission clinic (PAC) in a tertiary hospital and an outpatient sexual health clinic at a university hospital. Two hundred patients scheduled for elective surgery, and 17 patients diagnosed with HIV infection, respectively, recruited to the pharmacist prescribing arm of two collaborative doctor-pharmacist prescribing studies.ResultsConsultation satisfaction response rates in PAC and the sexual health clinic were 182/200 (91%) and 29/34 (85%), respectively. In the sexual health clinic, the attitudes towards pharmacist prescribing survey response rate were 14/17 (82%). Consultation satisfaction was high in both studies, most patients (98% and 97%, respectively) agreed they were satisfied with the consultation. In the sexual health clinic, all patients (14/14) agreed that they trusted the pharmacist's ability to prescribe, care was as good as usual care, and they would recommend seeing a pharmacist prescriber to friends.Discussion and Conclusion Most of the patients had a high satisfaction with pharmacist prescriber consultations, and a positive outlook on the collaborative model of care in the sexual health clinic.
    Health expectations: an international journal of public participation in health care and health policy 01/2015;
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    ABSTRACT: Objectives Question prompt lists (QPLs) are structured lists of disease and treatment-specific questions intended to encourage patient question-asking during consultations with clinicians. The aim of this study was to develop a QPL intended for use by parents of children affected by attention-deficit/hyperactivity disorder (ADHD).Methods The QPL content (111 questions) was derived through thematic analysis of existing ADHD- and QPL-related resources. A modified Delphi method, involving a three-round web-based survey, was used to reach consensus about the QPL content. Thirty-six experts were recruited into either a professional [paediatricians, child and adolescent psychiatrists, psychologists, researchers (n =28)] or non-professional panel [parents of children diagnosed with ADHD, ADHD consumer advocates (n = 8)]. Panel members were asked to rate the importance of the QPL content using a five-point scale ranging from ‘Essential’ to ‘Should not be included’.ResultsA total of 122 questions, including 11 new questions suggested by panellists, were rated by both panels. Of these, 88 (72%) were accepted for inclusion in the QPL. Of the accepted questions, 39 were re-rated during two follow-up survey rounds and 29 (74%) were subsequently accepted for inclusion. The questions covered key topics including diagnosis, understanding ADHD, treatment, health-care team, monitoring ADHD, managing ADHD, future expectations and support and information.Conclusions To our knowledge, this is the first ADHD-specific QPL to be developed and the first use of the Delphi method to validate the content of any QPL. It is anticipated that the QPL will assist parents in obtaining relevant, reliable information and empowering their treatment decisions by enhancing the potential for shared decision making with clinicians.
    Health expectations: an international journal of public participation in health care and health policy 12/2014;
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    ABSTRACT: Sharing the electronic health-care record (EHR) during consultations has the potential to facilitate patient involvement in their health care, but research about this practice is limited. We used multichannel video recordings to identify examples and examine the practice of screen-sharing within 114 primary care consultations. A subset of 16 consultations was viewed by the general practitioner and/or patient in 26 reflexive interviews. Screen-sharing emerged as a significant theme and was explored further in seven additional patient interviews. Final analysis involved refining themes from interviews and observation of videos to understand how screen-sharing occurred, and its significance to patients and professionals. Eighteen (16%) of 114 videoed consultations involved instances of screen-sharing. Screen-sharing occurred in six of the subset of 16 consultations with interviews and was a significant theme in 19 of 26 interviews. The screen was shared in three ways: 'convincing' the patient of a diagnosis or treatment; 'translating' between medical and lay understandings of disease/medication; and by patients 'verifying' the accuracy of the EHR. However, patients and most GPs perceived the screen as the doctor's domain, not to be routinely viewed by the patient. Screen-sharing can facilitate patient involvement in the consultation, depending on the way in which sharing comes about, but the perception that the record belongs to the doctor is a barrier. To exploit the potential of sharing the screen to promote patient involvement, there is a need to reconceptualise and redesign the EHR. © 2014 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 12/2014;
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    ABSTRACT: Children from culturally and linguistically diverse (CALD) backgrounds are at risk of having developmental problems go undetected prior to starting school, and missing out on early intervention. Our aim was to explore the family and service characteristics, beliefs and experiences that influence the journey of families from CALD backgrounds in accessing developmental surveillance (DS) and early intervention services in south-eastern Sydney, Australia. This qualitative study used in-depth interviews conducted with 13 parents from CALD backgrounds and 27 health and early childhood professionals in Sydney. The Andersen Behavioural Model of Health Service Use (BM) was the underlying theoretical framework for thematic analysis. Family and service knowledge about early childhood development (ECD), community attitudes, social isolation and English language proficiency were dominant themes that impacted on the probability of families accessing services in the first place. Those that impeded or facilitated access were resources, extended family and social support, information availability, competing needs, complex service pathways and community engagement. There were variable practices of early detection through DS. Children from CALD backgrounds with developmental problems were perceived to miss out on DS and early intervention despite language delay being a key issue identified by participants. This study highlights the importance of increased community and family awareness and professional training in ECD; better coordination of health and early childhood services, with simpler referral pathways to early intervention to prevent children from CALD backgrounds 'slipping through the net'. © 2014 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 12/2014;
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    ABSTRACT: The involvement of patient representatives in health technology assessment is increasingly seen by policy makers and researchers as key for the deployment of patient-centred health care, but there is uncertainty and a lack of theoretical understanding regarding the knowledge and expertise brought by patient representatives and organisations to HTA processes. To propose a conceptually-robust typological model of the knowledge and expertise held by patient organisations. The study followed a case-study design. Data were collected within an international research project on patient organisations' engagement with knowledge, and included archival and documentary data, in-depth interviews with key members of the organisation and participant observation. Data analysis followed standard procedure of qualitative analysis anchored in an analytic induction approach. Analysis identified three stages in the history of the patient organisation under analysis - Alzheimer's Society. In a first period, the focus is on 'caring knowledge' and an emphasis on its volunteer membership. In a transition stage, a combination of experiential, clinical and scientific knowledge is proposed in an attempt to expand its field of activism into HTA. In the most recent phase, there is a deepening of its network of associations to secure its role in the production of evidence. Analysis identified an important relationship between the forms of knowledge deployed by patient organisations and the networks of expertise and policy they mobilise to pursue their activities. A model of this relationship is outlined, for the use of further research and practice on patient involvement. © 2014 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 12/2014;
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    ABSTRACT: Evaluation of the association between treatment satisfaction and health-related quality of life (HRQoL) may enable health-care providers to understand the issues that influence quality of life and to recognize the aspects of hypertension treatment that need improvement to enhance the long-term treatment outcomes. The aim of this study was to determine the relationship between HRQoL and treatment satisfaction in a sample of Palestinian hypertensive patients. A cross-sectional study was conducted, adopting the Treatment Satisfaction Questionnaire for Medication (TSQM 1.4) for the assessment of treatment satisfaction and using the European Quality of Life scale (EQ-5D-5L) for the assessment of HRQoL. Descriptive and comparative statistics were used to describe socio-demographic and disease-related characteristics of the patients. All analyses were performed using SPSS v 15.0. Four hundred and ten hypertensive patients were enrolled in the study. This study findings indicate a positive correlation between all satisfaction domains and HRQoL. Significant differences were observed between this study variables (P < 0.001). After adjustment for covariates using multiple linear regression, an increase of one point in the global satisfaction scale was associated with a 0.16 increase in EQ-5D index scores (r = 0.16; P < 0.001). Patients with reportedly higher satisfaction scores have reported relatively higher EQ-5D-5L index values. These study findings could be helpful in clinical practice, mainly in the early treatment of hypertensive patients, at a point where improving treatment satisfaction and HRQoL is still possible. © 2014 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 12/2014;
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    ABSTRACT: To describe the perceptions and experiences of patients with type 1 diabetes, examine their duties and responsibilities for their own care and increase our understanding of the value-based role of patients in the changing healthcare environment. Current type 1 diabetes care highlights the importance of self-care and of patient involvement, which implies the need to evaluate the patients' role. Little is known about patients' views about their own role, and related responsibilities and duties for their own care. This is essential if we are to promote efficient patient involvement. This study had a qualitative descriptive design. We conducted one-to-one themed interviews with 20 patients with type 1 diabetes during summer 2013 at a diabetes polyclinic in Finland. Data were analysed using inductive content analysis. Patients with type 1 diabetes believed that their well-being and self-care required them to consider their own responsibilities and their duties towards themselves, family members, society and healthcare professionals. These duties were seen to have implications for care outcomes, quality of life, and effectiveness and economy in health care. However, patients' background, motivation, relationships with healthcare staff and patient counselling influenced whether they fulfilled those duties, which are all crucial elements in type 1 diabetes care. Patient duties are significant for the well-being of patients with type 1 diabetes, but also for their successful involvement in their care. This study can be used to inform the development of individual care planning and support of patient involvement. © 2014 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 12/2014;
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    ABSTRACT: There has been increasing interest in involving the public in systematic reviews as they provide a shortcut to the evidence and arguably have greater influence over policy decisions and ultimately people's lives. Case examples of this involvement are rare, especially for reviews focused on children and young people. This study describes the process and impact of consulting with a young people's advisory group to inform decision making in a systematic review on the effects of schools and school environment interventions on children and young people's health. Consultations were conducted with a pre-existing group of young people brought together to advise on public health research. Their views were sought at two key stages: (i) at the beginning when general views relating to the policy problem under study were elicited; and (ii) half-way through to advise on how to focus the review on key priorities. Young people's involvement in our review ensured that the scope of our review was appropriate and that issues which were important to young people were considered. The group was especially valuable in terms of prioritizing in a relevant and meaningful way. A crucial additional impact of involvement was young people providing 'early signals' of key themes for the synthesis. © 2014 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 12/2014;