Public involvement, both in the National Health Service (NHS) and in clinical research, is promoted as an important democratic principle. The declared aims are to reduce professional autocracy and allow a broader ownership of the research agenda; also to improve the design of, and recruitment and retention of patients to, clinical studies. There have been a number of national initiatives in the UK to improve public input to clinical research activities, but very few reports of effective and sustainable partnerships over time. This study reports the evaluation of one example, which is embedded in the NHS and university partnerships in the Norfolk area of England.

Evaluate:

• Putting principles into practice of public involvement in research over a 5 year period for one specific project (Patient and Public Involvement in Research).

• How the model contributes to, and impacts upon, all stages of the research process.

• Attitudes of the research community and lay volunteers to their mutual experiences of public involvement.

• Key factors and strengths of this project, and areas for improvement.

A mixed methods approach related to the 5 years from start of 2003 to end of 2007. This used descriptive statistics of volunteer activity, interviews with key stakeholders (13), questionnaires (53% response rate), and focus group with 10 volunteers to explore emergent themes. We analysed findings using a policy framework approach.

About 47 of the original 55 volunteers remained on the panel after 5 years. All have undertaken training, 38% have been involved in the full range of research activities offered, and 75% have attended at least one research project meeting. Some are active in governance, ethics, and advisory committees.

Both the research community and the volunteers are very positive about the project. The researchers find it provides well prepared personnel, and gives a speedy and efficient way of fulfilling the expectations of funders for lay input. The volunteers find it gives them important opportunities to influence the quality of research and thus support improvements in patient care. Areas for improvement include increasing social diversity among the volunteers, and improving feedback on input from volunteers, without which volunteers tend to lose confidence and motivation.

Long-term sustainable and valuable public input to research is possible. Key factors are committing resources, embedding the service in the infrastructure of a research consortium, and ongoing responsiveness by NHS staff and researchers. Additional activity to recruit and support access may be needed to attract people from a broad range of sociodemographic backgrounds. Some volunteers want more involvement than this model currently offers.

Waterpipe tobacco smoking (WTS), known in the United Kingdom as shisha, is popular among adolescents worldwide. Some electronic cigarettes are marketed in the United Kingdom as ‘electronic shisha’ (e-shisha). This study aimed to understand how WTS users view e-shisha and whether it could be used as a harm-reduction or cessation aid.

In-depth face-to-face interviews were conducted with 16 young adults recruited by snowball sampling in London, UK. Recurrent themes were derived iteratively through thematic analysis.

WTS is a socially acceptable activity, carried out at home or in a café. Peer influence and flavour play a key role in its use. Participants were aware of some health risks of WTS, although many accepted this risk and reported a need for more health-related WTS information. Although participants were familiar with e-shisha, there was no evidence of its use as a harm-reduction or cessation product. E-shisha tasted different to flavoured waterpipe tobacco and removed the positive social attributes typically ascribed to WTS. Waterpipe users felt e-shisha may encourage non-users to initiate cigarettes or WTS.

Opinions of reduced risk in using WTS may be due to the lack of available information, misconceptions and its easy accessibility. E-shisha does not appear to play a role in WTS harm reduction or cessation. On-going research efforts should test educational interventions addressing the adverse health impacts of WTS in this population group.

Achieving good response rates to population surveys from hard to reach groups in deprived areas can be challenging.

To explore and compare different approaches to improving response rates in an economically deprived multicultural area.

Following a lower than anticipated response rate in a pilot study for a postal questionnaire survey of chronic pain (79/653 (12%)), we conducted a second pilot involving a shorter postal survey and separate collection of more detailed information in a waiting room survey. The second postal survey used a shorter questionnaire, telephone data collection from non-responders by study team members rather than telephone reminders from practice receptionists, and involved a nested randomised-controlled trial (RCT) of hand-addressed versus printed-address envelopes. Both pilots involved subjects randomly selected from the practice registers.

The second pilot postal survey using shorter questionnaires yielded considerably more responses (240/642 (37%)). Our RCT showed that hand-addressed envelopes achieved a slightly higher response rate although not large enough to justify its use in our main study. The waiting room survey was successful in collecting more detailed data from lengthy questionnaires.

A range of methods of questionnaire administration may be required when conducting a survey with a hard to reach group in a deprived and ethnically diverse population. Postal and telephone administration can be used to collect a small amount of data. Face-to-face administration and recruitment can be successful for longer questionnaires.

Adult community nursing services are evolving around the world in response to government policies and changing patient demographics. Amidst these changes, recruitment and retention of community nursing staff are proving a challenge. An integrative literature review has identified multiple factors that influence nurse retention in adult community nursing with sparse information on recruitment factors. Although factors impacting retention of community nurses have been identified, their generalisability around the world is a challenge as they are context and co-dependent. Indicating the need for this area of study to be explored at a local level, as the same factors present with different findings globally.

To establish factors influencing recruitment and retention of registered nurses in adult community nursing services.

Integrative literature review.

Four electronic databases were searched in August 2019 from January 2008 to December 2018: CINAHL Complete, Web of Science, MEDLINE and PROQUEST. Both qualitative and quantitative studies focusing on factors influencing community nursing recruitment and retention were included.

An integrative literature review methodology by Whittemore and Knafl (The integrative review: updated methodology. Journal of Advanced Nursing 52, 546–553) was followed, supported by Cochrane guidelines on data synthesis and analysis using a narrative synthesis method. The Center for Evidence-Based Management (CEBMa) critical appraisal tools were used for study quality assessment.

Ten papers met the study inclusion criteria. Data synthesis and analysis revealed individual and organisational factors influencing the retention of community nurses with the following three dominant themes: (1) work pressure, (2) working conditions and (3) lack of appreciation by managers.

The review identified context-dependent factors that influence adult community nurses’ retention with limited generalisability. There is a lack of data on factors influencing recruitment into adult community nursing; further research is needed to explore factors affiliated to community nursing recruitment.

The aim of this study was to determine the feasibility and efficacy of a culturally tailored lifestyle intervention, ¡Vivir Mi Vida! (Live My Life!). This intervention was designed to improve the health and well-being of high risk late middle-aged Latino adults and to be implemented in a rural primary care system.

Rural-dwelling Latino adults experience higher rates of chronic disease compared with their urban counterparts, a disparity exacerbated by limited access to healthcare services. Very few lifestyle interventions exist that are both culturally sensitive and compatible for delivery within a non-metropolitan primary care context.

Participants were 37 Latino, Spanish-speaking adults aged 50–64-years-old, recruited from a rural health clinic in the Antelope Valley of California. ¡Vivir Mi Vida! was delivered by a community health worker-occupational therapy team over a 16-week period. Subjective health, lifestyle factors, and cardiometabolic measures were collected pre- and post-intervention. Follow-up interviews and focus groups were held to collect information related to the subjective experiences of key stakeholders and participants.

Participants demonstrated improvements in systolic blood pressure, sodium and saturated fat intake, and numerous patient-centered outcomes ranging from increased well-being to reduced stress. Although participants were extremely satisfied with the program, stakeholders identified a number of implementation challenges. The findings suggest that a tailored lifestyle intervention led by community health workers and occupational therapists is feasible to implement in a primary care setting and can improve health outcomes in rural-dwelling, late middle-aged Latinos.

To systematically review studies reporting the effectiveness of various models of follow-up in primary care on a range of outcomes (physical, psychological, social functioning, or quality of life) for survivors of stroke and their caregivers.

Stroke is a major cause of disability globally. Current UK policy calls for a primary care-based review of healthcare and social-care needs at six weeks and six months after hospital discharge and then annually.

Trials meeting the pre-defined inclusion criteria were identified by the systematic searching of electronic databases. Data were extracted by two independent researchers. Studies were rated using the McMaster University Quality Assessment Tool.

Nine randomised controlled trials that met the inclusion criteria were identified. These studies included interventions using stroke support workers, care coordinators or case managers. The methodological quality of the studies was variable, and models of care demonstrated inconsistent working relationships with general practitioners. Patients and caregivers receiving formal primary care-based follow-up did not show any gains in physical function, mood, or quality of life when compared with those who did not. Patients and caregivers receiving follow-up were generally more satisfied with some aspects of communication, and had a greater knowledge of stroke.

The limited quality of these studies and the lack of a sound theoretical basis for the development of interventions together highlight the urgent need for high-quality research studies in this area.

Acceptance and commitment therapy (ACT), a form of cognitive-behavioral therapy, may help meet a need for accessible and cost-effective treatments for chronic pain. ACT has a growing evidence base, but has not yet been tested within general practice settings.

The purpose of the present study was to examine the feasibility of conducting a full-scale randomized controlled trial of ACT in general practice.

A total of 481 potential participants with chronic pain identified from general practice in southwest England were invited into a treatment trial. Subsequently, 102 (21.2%) of those invited were screened, and 73 (71.6%) of those screened were allocated to ACT plus usual care or usual care alone. The ACT treatment included four, four-hour group-based sessions over two weeks.

Twenty-six (70.3%) of the patients allocated to ACT attended three or four sessions. Those who received ACT rated it as credible in a short survey, with Mdn rating 7.0 on a 0–10 scale, across five credibility items. During a post-treatment interview considering 12 aspects of the study from invitation to treatment termination, a median of 79.2% of participants rated the aspects ‘acceptable.’ Qualitative data from the interviews showed a mixed picture of patient experiences, revealing possible tensions between patients’ wishes to avoid discomfort and confusion, and treatment methods that explicitly ask patients to, in essence, ‘live with’ some discomfort and confusion.

These data suggest that further study of ACT, as a treatment for chronic pain, is feasible in general practice and it may be possible to further optimize the treatment experience.

To conduct an environmental scan of a rural primary care clinic to assess the feasibility of implementing an e-communications system between patients and clinic staff.

Increasing demands on healthcare require greater efficiencies in communications and services, particularly in rural areas. E-communications may improve clinic efficiency and delivery of healthcare but raises concerns about patient privacy and data security.

We conducted an environmental scan at one family health team clinic, a high-volume interdisciplinary primary care practice in rural southwestern Ontario, Canada, to determine the feasibility of implementing an e-communications system between its patients and staff. A total of 28 qualitative interviews were conducted (with six physicians, four phone nurses, four physicians’ nurses, five receptionists, one business office attendant, five patients, and three pharmacists who provide care to the clinic’s patients) along with quantitative surveys of 131 clinic patients.

Patients reported using the internet regularly for multiple purposes. Patients indicated they would use email to communicate with their family doctor for prescription refills (65% of respondents), appointment booking (63%), obtaining lab results (60%), and education (50%). Clinic staff expressed concerns about patient confidentiality and data security, the timeliness, complexity and responsibility of responses, and increased workload.

Clinic staff members are willing to use an e-communications system but clear guidelines are needed for successful adoption and to maintain privacy of patient health data. E-communications might improve access to and quality of care in rural primary care practices.

To investigate the efficacy of alarm therapy versus desmopressin therapy in treating primary mono-symptomatic nocturnal enuresis (PMNE).

PMNE is a common childhood disorder, which if left untreated can have a significant impact on a child's self-esteem and behaviour. Alarm therapy and desmopressin therapy are the two main treatments currently available in UK-based nurse-led enuresis clinics.

A systematic review of the literature was undertaken to assess the efficacy of PMNE treatments. Following application of inclusion/exclusion criteria eight randomised controlled/clinical trials were identified involving children aged 5–17 years with PMNE receiving either alarm therapy or desmopressin therapy.

Seven studies found no statistical difference in nocturnal continence improvement between the two interventions at the point when treatment was stopped. Four studies had a significantly larger relapse rate of nocturnal enuresis with desmopressin compared with alarm therapy when the treatment was withdrawn. Two papers reported that those participating in the alarm therapy intervention of the trials had a higher attrition rate than the desmopressin intervention. The overall findings from the eight studies showed that long term alarm therapy was more effective in treating nocturnal enuresis than desmopressin therapy. The review found that families and children receiving the alarm therapy intervention require more support from health care professionals to comply with treatment than those receiving the desmopressin therapy. However, if nurse-led clinics can support families to persist with the alarm therapy intervention, they are more likely to experience longer term improvement in continence.

New public management (NPM) was developed as a management reform to improve the efficiency and effectiveness in public organizations, especially in health sector. Using the features of private sector management, the managers of health organizations may try to implement the elements of NPM with the hope to improve the performance of their systems.

Our aim in the present study was to identify the elements and infrastructures suitable for implementing NPM in the Iranian health complex.

In this qualitative study with conventional content analysis approach, we tried to explore the NPM elements and infrastructures in Iranian public health sector. A series of semi-structured interviews (n=48) were conducted in 2016 with a managers in public and private health complex. Three focus group discussions with nine faculty members were also conducted. A data collection form was used to collect the demographic characteristics and perspectives of the participants.

From the perspective of managers, managerialism, decentralization, using market mechanism, performance management, customer orientation and performance budgeting were the main elements of NPM in the Iranian context. The most important infrastructures for implementing this reform were as follows: education and training, information technology, the proper use of human resources, decision support systems, top management commitment, organizational culture, flexibility of rules, rehabilitating of the aging infrastructures, and expanding the coverage of services.

The NPM was generally identified to be an effective replacement for the traditional administration method. These reforms may be helpful in strengthening the public health complex and the management capacity, as well. NPM also seems to be useful in interacting the public health sector with the private sector in terms of personnel and resources, performance, reward structure, and methods of doing business.

This study aims to explore the possible reasons for the lower levels of diagnosis of chronic fatigue syndrome/myalgic encephalitis (CFS/ME) in the black and minority ethnic (BME) population, and the implications for management.

Population studies suggest CFS/ME is more common in people from BME communities compared with the White British population. However, the diagnosis is made less frequently in BME groups.

Semi-structured qualitative interviews were conducted with 35 key stakeholders in NW England. Interviews were analysed using open explorative thematic coding.

There are barriers at every stage to the diagnosis and management of CFS/ME in people from BME groups. This begins with a lack of awareness of CFS/ME among BME respondents. Religious beliefs and the expectation of roles in the family and community mean that some people in BME groups may choose to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing. When accessing primary care, all participants recognised the possible influence of language barriers in reducing the likelihood of a diagnosis of CFS/ME. Stereotypical beliefs, including labels such as ‘lazy’ or ‘work shy’ were also believed to act as a barrier to diagnosis. Patients highlighted the importance of an on-going relationship with the general practitioner (GP), but perceived a high turnover of GPs in inner city practices, which undermined the holistic approach necessary to achieve a diagnosis.

Training is required for health professionals to challenge inaccurate assumptions about CFS/ME in BME groups. The focus on the individual in UK primary care may not be appropriate for this group due to the role played by the family and community in how symptoms can be presented and managed. Culturally sensitive, educational resources for patients are also needed to explain symptoms and legitimise consultation.

This paper aims to identify barriers that frail community-dwelling older adults experience regarding access to formal care and support services.

Universal access to healthcare has been set by the World Health Organisation (WHO) as a main goal for the post-2015 development agenda. Nevertheless, regarding access to care, particular attention has to be paid to the so-called vulnerable groups, such as (frail) older adults.

Both inductive and deductive content analyses were performed on 22 individual interviews with frail, community-dwelling older adults who indicated they lacked care and support. The coding scheme was generated from the conceptual framework ‘6A’s of access to care and support’ (referring to work of Penchansky and Thomas, 1981; Wyszewianski, 2002; Saurman, 2016) and applied on the transcripts.

Results indicate that (despite all policy measures) access to a broad spectrum of care and support services remains a challenge for older people in Belgium. The respondents’ barriers concern: ‘affordability’ referring to a lot of Belgian older adults having limited pensions, ‘accessibility’ going beyond geographical accessibility but also concerning waiting lists, ‘availability’ referring to the lack of having someone around, ‘adequacy’ addressing the insufficiency of motivated staff, the absence of trust in care providers influencing ‘acceptability’, and ‘awareness’ referring to limited health literacy. The discussion develops the argument that in order to make care and support more accessible for people in order to be able to age in place, governments should take measures to overcome these access limitations (eg, by automatic entitlements) and should take into account a broad description of access. Also, a seventh barrier (a seventh A) within the results, namely ‘ageism’, was discovered.

To outline the pathways a cohort of first attendees to our headache clinics had taken over the years in search of explanations and treatment for their headaches. To establish a greater awareness of the shortcomings and failures in their medical journey in the hope that better headache management will emerge in primary care.

At first attendance in primary care most headache sufferers will not receive a firm diagnosis. Treatments provided are often ineffective and so many patients embark on a somewhat random self-made journey searching for a remedy. If they reach a Headache Clinic the most common diagnoses are ‘chronic migraine’ and ‘medication overuse headache’. They are either no better or worse than when their headaches first started despite their efforts.

We undertook a prospective questionnaire-based study of over 200 patients on first attendance at each of our headache clinics, three based in District General Hospitals and one in a tertiary referral centre. We documented the patients’ headache characteristics, the ‘burden’ of their headaches, functional handicap and the financial costs incurred seeking help before referral. We also documented what our patients understood about their headache disorder and the treatments previously tried.

Most patients had not been given a formal diagnosis in primary care and many remained unconvinced of the benign nature of their headache problem and wanted further investigations. A few had sought help from headache charities. Many had unrealistic attitudes to their problem and medication overuse was rife. A few patients had been offered triptans in primary care. Key deficiencies in the primary care management of these patients included failure to provide a formal headache diagnosis, inadequate understanding of the nature and mechanism of headaches and failure to follow a resilient management strategy. We provide a more effective management pathway in primary care.

To describe conceptions of daily life in women living with a man suffering from chronic obstructive pulmonary disease (COPD) in different stages.

The spouse is often the primary caregiver to someone with COPD, and thus also affected by the consequences of the disease. No previous studies have been found focusing on conceptions of daily life in women living with a man suffering from COPD in different stages.

A phenomenographic study was conducted. Data were collected in 2008–2009 through semi-structured interviews with 21 women living with men suffering from COPD in different stages.

Four main descriptive categories were found: unchanged life situation where no support was needed; socially restricted life and changed roles; changes in health; and changes in the couple's relationship where support was needed. The categories are described in relation to the woman herself, in relation to the man, and in relation to others. No support was needed from society or health care when the men had mild COPD and the women experienced no change in their daily life. As the disease progressed, the women's responsibilities increased and their role changed from being a spouse to being an informal carer. Social contacts became limited, and they began to feel isolated. The women prioritized their spouse's health and well-being and compromised their own health. They experienced lack of support from health professionals and from the municipality.

To ascertain how new funding arrangements, introduced in New Zealand's 2001 Primary Health Care (PHC) Strategy, have impacted on the expansion of nurses’ role in general practice.

Nurses are central to the new policy that was designed to improve the health status of New Zealanders and reduce inequalities in health. Nurses were to be a crucial part of the PHC team, expanding their current roles to provide increased access to appropriate services. This paper investigates how the new funding arrangements, introduced as part of the policy, have impacted on the expansion of nurses’ roles and consequently the realisation of the policy goals.

Semi-structured interviews were undertaken with 128 key stakeholders five years after the introduction of the PHC Strategy, and surveys were completed by practice nurses, general practitioners and practice managers in purposively selected practices within the 20 participating Primary Health Organisations.

There has been substantial growth in the development of nursing roles for some nurses in general practice; however, this expansion has not been universal and one of the main reasons for this is the way funding devolves at the practice level. One of the consequences of the policymakers not taking into account the business model of the majority of general practices, is the resulting overarching goal of the strategy not being realised, and inequalities in health status remaining.