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

Publisher: Wiley

Journal 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.

Current impact factor: 1.80

Impact Factor Rankings

Additional details

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


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    • If OnlineOpen is available, BBSRC, EPSRC, MRC, NERC and STFC authors, may self-archive after 12 months
    • If OnlineOpen is available, AHRC and ESRC authors, may self-archive after 24 months
    • Publisher last contacted on 07/08/2014
    • This policy is an exception to the default policies of 'Wiley'
  • Classification
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Publications in this journal

  • [Show abstract] [Hide abstract]
    ABSTRACT: Sight impairment increases with age and, compared with the general older population, older people with sight impairment are more likely to fall. There is a growing body of evidence on the views and perceptions of older people about falls, but little is published on the views of older people with sight impairment. To explore what older people with sight impairment believe to be the causes of falls. A qualitative design was used, incorporating focus groups and interviews in which participants discussed falls and falls prevention. Framework analysis was employed to identify themes arising from participants' discussions of the causes of falls. Fifty-four community dwelling men and women with sight impairment, aged 65 and over, were recruited from across Greater Manchester, UK. Five types of factors were identified that were believed to cause falls: (i) health issues and changes in balance caused by ageing; (ii) cognitive and behavioural factors; (iii) the impact of sight impairment on getting around the home; (iv) the impact of sight impairment on negotiating the environment away from home; and (v) unexplained falls. Older people with sight impairment reported many researched risk factors previously identified by older people without sight impairment but also described many perceived risks unique to people with sight impairment. There are few interventions to prevent falls aimed at older people with sight impairment, and the results of this study allow further tailoring of such interventions based on views of older people with sight impairment. © 2015 The Authors Health Expectations Published by John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 03/2015; DOI:10.1111/hex.12355
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    ABSTRACT: To explore people's responses to narrative information in the context of colorectal cancer screening. Nineteen in-depth interviews were conducted with men and women (aged 45-59). Participants were given two types of colorectal screening information to read: factual and narrative. Participants gave their views on both types of information. Data were analysed using Framework Analysis. The most frequent responses to the narrative information were that they were reassuring, made colorectal screening more vivid, participants could relate to the people in the stories and they liked the range of narratives presented. Despite the narrative information being seen as more persuasive by some, this was not regarded as manipulative or negative. Both types of information were seen as equally credible. Participants felt a combination of facts and narratives would be useful when considering an offer of colorectal cancer screening. Overall, participants were positive about the addition of narrative information to the currently provided factual information about colorectal cancer screening. Supplementing existing factual information with narrative information may provide participants with a more complete understanding of participation in colorectal cancer screening when considering an offer to be screened. © 2015 The Authors Health Expectations Published by John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 03/2015; DOI:10.1111/hex.12357
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    ABSTRACT: Peer support is valued by its users. Nevertheless, there is initial low take-up of formal peer support programmes among patients with chronic kidney disease (CKD), with fewer patients participating than expressing an interest. There is little evidence on reasons for low participation levels. Few studies have examined the perspectives of carers. To explore with CKD patients and carers their needs, wants and expectations from formal peer support and examine how barriers to participation may be overcome. Qualitative interviews with a sample of 26 CKD stage five patients and carers. Principles of Grounded Theory were applied to data coding and analysis. Six NHS Hospital Trusts. Whilst informal peer support might occur naturally and is welcomed, a range of emotional and practical barriers inhibit take-up of more formalized support. Receptivity varies across time and the disease trajectory and is associated with emotional readiness; patients and carers needing to overcome complex psychological hurdles such as acknowledging support needs. Practical barriers include limited understanding of peer support. An attractive peer relationship is felt to involve reciprocity based on sharing experiences and both giving and receiving support. Establishing rapport is linked with development of reciprocity. There is potential to facilitate active uptake of formal peer support by addressing the identified barriers. Our study suggests several facilitation methods, brought together in a conceptual model, including clinician promotion of peer support as an intervention suitable for anyone with CKD and their carers, and opportunity for choice of peer supporter. © 2015 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12348
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    ABSTRACT: It is necessary to raise a positive attitude towards cancer information to improve disease prevention and control. To identify social factors, health characteristics and cancer-related perceptions and knowledge associated with a positive attitude towards cancer information. We ran multivariate logistic regression models to analyse population-based data from OncoBarómetro-2010, a Spanish representative survey on perceptions and knowledge, related to cancer, conducted among 7938 people aged 18 years or more. Attitudes towards cancer information. A positive attitude includes feeling motivated to keep informed, to have screening tests or to change lifestyle. A negative attitude includes feeling indifference, concern, frustration or fear. 38.3% of the studied population reported having received information related to cancer (within the last 6 months). Among those, 31.5% expressed a negative attitude towards cancer information. People more likely to have a positive attitude towards cancer information (reference category: negative attitude) were people aged 35-74 (ref: aged 18-34) (P < 0.001) and cancer survivors (ref: those who had not had cancer) (OR: 3.05; 95% CI: 1.73-5.38). The likelihood of a positive attitude increased with the level of education (P < 0.001). The variables negatively associated with a positive attitude towards cancer information were poor self-rated health status (ref: fair) (OR: 0.63; 95% CI: 0.42-0.95) and high self-perceived risk of developing cancer (ref: low) (OR: 0.75; 95% CI: 0.60-0.92). These findings have potential to inform programmes designed to promote cancer prevention behaviours. Policies should target population groups with low socio-economic groups, those with poor self-rated health and individuals with high self-perceived risk of cancer. Further, in order to increase knowledge of cancer symptoms, we need to focus on individuals with unhealthy lifestyles. © 2015 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12349
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    ABSTRACT: Background The concept of service user involvement is an evolving concept in the mental health-care literature.Objective This study sought to explore and analyse the concept of service user involvement as used in within the field of mental health care.Methodological approachAn evolutionary concept analysis was conducted using a literature-based sample extracted from an electronic database search. One hundred and thirty-four papers met the inclusion criteria and were analysed to discover key attributes, antecedents and consequences of service user involvement and to produce a definition of the concept.FindingsFive key attributes of service user involvement within the context of mental health care were identified: a person-centred approach, informed decision making, advocacy, obtaining service user views and feedback and working in partnership.Discussion and conclusionsClarity of the attributes and definition of the concept of service user involvement aims to promote understanding of the concept among key stakeholders including mental health professionals, service users and community and voluntary organizations. The findings of the research have utility in the areas of theory and policy development, research on service user involvement in mental health care and service user involvement in mental health practice. Directions for further research regarding the concept are identified.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12353
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    ABSTRACT: Background There is increasing recognition of the Internet's potential role in providing information and support for people living with long-term conditions. However, how young people and parents use online forms of self-care support in the context of living with childhood chronic illness has been under-researched.Objective To explore how online peer support is used by young people and parents to support self-care in relation to cystic fibrosis (CF).Setting and participantsOnline forum for young people and parents based on a CF charity website. A total of 279 individuals participated in the forum during the study.DesignAn online ethnographical approach, involving observing, downloading and analysing discussion group postings. All postings made over a random 4-month period were included (151 discussion threads).ResultsThe online setting enabled a physically disconnected group to connect and create a safe space to collectively share experiences and receive support to manage and live with cystic fibrosis. Participants exchanged experientially derived advice and views on how to manage treatments, emotions, relationships, identity and support from services. While parents sought information and support on managing specific therapies/services and ways of maintaining their child's health, the information and support young people desired appeared to be more directed at how to ‘fit’ CF into their everyday lives.Discussion and conclusionsOnline support groups appear to supplement professional support in relation to self-management. They enable young people and parents to share experiences, feelings and strategies for living with long-term conditions with peers and develop the expertise to empower them in interactions with health-care professionals.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12352
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    ABSTRACT: IntroductionPatient safety research has tended to focus on hospital settings, although most clinical encounters occur in primary care, and to emphasize practitioner errors, rather than patients' own understandings of safety.Objective To explore patients' understandings of safety in primary care.Methods Qualitative interviews were conducted with patients recruited from general practices in northwest England. Participants were asked basic socio-demographic information; thereafter, topics were largely introduced by interviewees themselves. Transcripts were coded and analysed using NVivo10 (qualitative data software), following a process of constant comparison.ResultsThirty-eight people (14 men, 24 women) from 19 general practices in rural, small town and city locations were interviewed. Many of their concerns (about access, length of consultation, relationship continuity) have been discussed in terms of quality, but, in the interviews, were raised as matters of safety. Three broad themes were identified: (i) trust and psycho-social aspects of professional–patient relationships; (ii) choice, continuity, access, and the temporal underpinnings of safety; and (iii) organizational and systems-level tensions constraining safety.DiscussionConceptualizations of safety included common reliance on a bureaucratic framework of accreditation, accountability, procedural rules and regulation, but were also individual and context-dependent. For patients, safety is not just a property of systems, but personal and contingent and is realized in the interaction between doctor and patient. However, it is the systems approach that has dominated safety thinking, and patients' individualistic and relational conceptualizations are poorly accommodated within current service organization.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12342
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    ABSTRACT: AimThis study examined Latin American evaluation needs regarding the development of a collaborative mental health care (CMHC) evaluation framework as seen by local key health-care leaders and professionals. Potential implementation challenges and opportunities were also identified.Methods This multisite research study used an embedded mixed methods approach in three public health networks in Mexico, Nicaragua and Chile. Local stakeholders participated: decision-makers in key informant interviews, front-line clinicians in focus groups and other stakeholders through a survey. The analysis was conducted within site and then across sites.ResultsA total of 22 semi-structured interviews, three focus groups and 27 questionnaires (52% response rate) were conducted. Participants recognized a strong need to evaluate different areas of CMHC in Latin America, including access, types and quality of services, human resources and outcomes related to mental disorders, including addiction. A priority was to evaluate collaboration within the health system, including the referral system. Issues of feasibility, including the weaknesses of information systems, were also identified.Conclusion Local stakeholders strongly supported the development of a comprehensive evaluation framework for CMHC in Latin America and cited several dimensions and contextual factors critical for inclusion. Implementation must allow flexibility and adaptation to the local context.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12338
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    ABSTRACT: Background Low uptake of sexually transmitted infection (STI) testing by young people is a major public health problem worldwide. The aims of this qualitative, community-based study were to explore access and attitudes to STI screening in high risk, young, ethnically diverse female students.Methods Qualitative semi-structured interviews were conducted at an inner-London further education college with 17 women aged 16–25 years.ResultsThe women wanted convenient, regular STI testing and perceived this as responsible behaviour. However, they doubted the maturity of their peers who were unlikely to view themselves as candidates for testing, and feared the perceived stigma associated with testing. This was reflected in their preference for confidential testing. Despite attending their general practice for non-sexual health matters, most did not consider this option for STI testing. However, the long wait in specialist clinics was an important barrier. Many younger participants would not want postal STI sample kits sent to their homes. We found dissatisfaction with sexual health education.ConclusionsSTI screening for underserved groups such as young sexually active ethnically diverse female college students needs to be confidential, convenient, easily accessed and offered in ways that allow them to consider themselves as candidates for such screening without fear of social stigma. Family doctors should be aware that young women often do not perceive primary care to be an option for accessing STI screening, and could consider ways of advertising these services. Policymakers and commissioners should be aware that clinic waiting times and lack of education remain barriers to testing.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12354
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    ABSTRACT: Background Governments use a variety of processes to incorporate public perspectives into policymaking, but few studies have evaluated these processes from participants’ point of view.Objective The objective of this study was twofold: to understand the perspectives of selected stakeholders with regard to involvement processes used by Australian Advisory Committees to engage the public and patients; and to identify barriers and facilitators to participation.DesignTwelve semi-structured interviews were conducted with representatives of different stakeholder groups involved in health technology funding decisions in Australia. Data were collected and analysed using a theoretical framework created by Rowe and Frewer, but adapted to more fully acknowledge issues of power and influence.ResultsStakeholder groups disagreed as to what constitutes effective and inclusive patient involvement. Barriers reported by interviewees included poor communication, a lack of transparency, unworkable deadlines, and inadequate representativeness. Also described were problems associated with defining the task for patients and their advocates and with the timing of patient input in the decision-making process. Interviewees suggested that patient participation could be improved by increasing the number of patient organizations engaged in processes and including those organizations at different stages of decision making, especially earlier.Conclusions The different evaluations made by stakeholder groups appear to be underpinned by contrasting conceptions of public involvement and its value, in line with Graham Martin's work which distinguishes between ‘technocratic’ and ‘democratic’ public involvement. Understanding stakeholders’ perspectives and the contrasting conceptions of public involvement could foster future agreement on which processes should be used to involve the public in decision making.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12356
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    ABSTRACT: Objective The aim of this study was to ascertain Patients' pre-operative expectations of total knee arthroplasty (TKA) recovery.Methods Two hundred and thirty-six patients with knee osteoarthritis (OA) who underwent TKA completed self-administered questionnaires before their surgery. Patients' expectations of time to functional recovery were measured using an ordinal time–response scale to indicate expected time to recovery for each of 10 functional activities. Expected time to recovery was dichotomized into short- and long-term expectations for recovery of each activity using median responses. Knee pain and function were ascertained using the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC). Other measures included the SF-36, the Depression, Anxiety and Stress Scale (DASS) and the Medical Outcomes Study Social Support Survey (MOS-SSS). Multivariate logistic regression was used to identify pre-operative characteristics associated with short- vs. long-term expectations.ResultsSixty-five percent of the patients were females and 70% Whites; mean age was 65 years. Patients were optimistic about their time to functional recovery: over 65% of patients expected functional recovery within 3 months. Over 80% of the patients expected to perform 8 of the 10 activities within 3 months. Patients who expected to be able to perform the functional activities in <6 weeks were more likely to be younger, male, and have lower self-reported pain and better general health before surgery compared to those who expected to be able to perform the activities 3 months post-surgery or later.Conclusion Pre-operative patient characteristics may be important to evaluate when considering individual Patients' expectations of post-operative outcomes.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12350
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    ABSTRACT: An increasing part of prescribing of medicines is done for the purpose of managing risk for disease and is motivated by clinical and economic benefit on a long-term, population level. This makes benefit from medicines less tangible for individuals. Sociology of pharmaceuticals includes personal and social perspectives in the study of how medicines are used. We use two characterizations of patients' expectations of medicines to start forming a description of how individuals conceptualize benefits from risk management medicines. We reviewed the literature on patients' expectations with a focus on the influences on expectations regarding medicines prescribed for long-term conditions. Searches in Medline and Scopus identified 20 studies for inclusion, describing qualitative aspects of beliefs, views, thoughts and expectations regarding medicines. A qualitative synthesis using a constant comparative thematic analysis identified four themes describing influences on expectations: a need to achieve a specific outcome; the development of experiences and evaluation over time; negative values such as dependency and social stigma; and personalized meaning of the necessity and usefulness of medicines. The findings in this synthesis resonate with previous research into expectations of medicines for prevention and treatment of different conditions. However, a gap in the knowledge regarding patients' conceptualization of future benefits with medicines is identified. The study highlights suggestions for further empirical work to develop a deeper understanding of the role of patients' expectations in prescribing for long-term risk management. © 2015 John Wiley & Sons Ltd.
    Health expectations: an international journal of public participation in health care and health policy 02/2015; DOI:10.1111/hex.12345
  • Health expectations: an international journal of public participation in health care and health policy 02/2015; 18(1):1-2. DOI:10.1111/hex.12321
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    ABSTRACT: Background Shared decision making is promoted to improve cancer care quality. Patients and clinicians may have different ideas about what constitutes a cancer care decision, which may limit the validity of self-reported measures of shared decision making. We sought to estimate the extent to which patients and clinicians agree on whether a cancer care decision was made during an outpatient encounter.Methods We surveyed patients and clinicians immediately after an oncology encounter at a large, tertiary medical centre and calculated agreement in response to the single-item question, ‘Was a specific decision about cancer care made during the appointment today?’ Answer options were ‘yes’ and ‘no’. Participants were 315 oncology patients, with any solid tumour malignancy and at any stage of management, and their clinicians (22 staff oncologists, nine senior fellows and five nurse practitioners).ResultsPatients and clinicians reported having made a cancer care decision in 184 (58%) and 174 (55%) of encounters, respectively. They agreed on whether a cancer care decision was made in 213 (68%) of encounters (chance-adjusted agreement was 0.34); in 56 of the 102 discordant encounters, the patient reported making a decision while the clinician did not. We found no significant correlates with discordance.Conclusions Patients and clinicians do not always agree on whether a cancer care decision was made. As such, measures that ask patients and/or clinicians to evaluate a decision-making process or outcome may be methodologically insufficient when they do not explicitly orient respondents towards the thing they are being asked to assess.
    Health expectations: an international journal of public participation in health care and health policy 01/2015; DOI:10.1111/hex.12340
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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; DOI:10.1111/hex.12329
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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; DOI:10.1111/hex.12336