Service user involvement in nursing, midwifery and health visiting research: A review of evidence and practice

Smith, E.; Ross, Fiona; Donovan, Sheila; Manthorpe, Jill; Brearley, Sally; Sitzia, John; Beresford, Peter

doi:10.1016/j.ijnurstu.2006.09.010

Cited by 95 publications

(144 citation statements)

References 63 publications

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“…In contrast to previous observations 18 that PPI conceptualisations have not addressed the dynamic nature of PPI within research, our analysis, and the framework that it underpins, is able to take into account a dynamic concept of PPI within a research study.…”

Section: Dynamic Framework For Patient and Public Involvementmentioning

confidence: 74%

“…These include increased relevance of the research through identifying research questions and prioritising research agendas, appropriate research conduct, addressing ethical tensions and matching research with policy objectives. 12,[15][16][17][18][19] These three drivers have resulted in PPI being imperative for health research in the UK. However, despite this, PPI is poorly defined and conceptualised, 20,21 with varied definitions and terms used to describe it.…”

Section: Stage 3: Case Studiesmentioning

confidence: 99%

“…18 For example, one case study (CS01) recorded only a one-off narrowly defined PPI input, which reflected the CI's reservations about any benefits of PPI.…”

Section: Dynamic Framework For Patient and Public Involvementmentioning

confidence: 99%

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ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

230

281

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BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Dynamic Framework For Patient and Public Involvementmentioning

confidence: 74%

Section: Stage 3: Case Studiesmentioning

confidence: 99%

See 1 more Smart Citation

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

230

281

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“…A theoretical framework of service user involvement in research consists of four interlinked main components: context (e.g., trends of health care practice and research, health policy, concepts of involvement/participation); methods (e.g., working relationships, paying attention to who and when to involve service users, planning and costing the involvement); roles (e.g., different types of research roles for service users, personal skills and capacitybuilding) and outcomes (e.g., types of outcome relevant to service users, recognising the impact, recording impact) (Smith et al 2008;Morrow et al 2012). Service user involvement in research has also been conceptualised into a framework, which considers the level and stage of involvement (Morrow et al 2012).…”

Section: Mental Health Service Users and Caregiversmentioning

confidence: 99%

Developing capacity-building activities for mental health system strengthening in low- and middle-income countries for service users and caregivers, service planners, and researchers

Semrau

Alem

Abdulmalik

et al. 2017

Epidemiol Psychiatr Sci

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There is increasing international recognition of the need to build capacity to strengthen mental health systems. This is a fundamental goal of the ‘Emerging mental health systems in low- and middle-income countries’ (Emerald) programme, which is being implemented in six low- and middle-income countries (LMICs) (Ethiopia, India, Nepal, Nigeria, South Africa, Uganda). This paper discusses Emerald's capacity-building approaches and outputs for three target groups in mental health system strengthening: (1) mental health service users and caregivers, (2) service planners and policy-makers, and (3) mental health researchers. When planning the capacity-building activities, the approach taken included a capabilities/skills matrix, needs assessments, a situational analysis, systematic reviews, qualitative interviews and stakeholder meetings, as well as the application of previous theory, evidence and experience. Each of the Emerald LMIC partners was found to have strengths in aspects of mental health system strengthening, which were complementary across the consortium. Furthermore, despite similarities across the countries, capacity-building interventions needed to be tailored to suit the specific needs of individual countries. The capacity-building outputs include three publicly and freely available short courses/workshops in mental health system strengthening for each of the target groups, 27 Masters-level modules (also open access), nine Emerald-linked PhD students, two MSc studentships, mentoring of post-doctoral/mid-level researchers, and ongoing collaboration and dialogue with the three groups. The approach taken by Emerald can provide a potential model for the development of capacity-building activities across the three target groups in LMICs.

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“…[172][173][174][175] The benefits of such involvement in health and social care research are manifold. Service users can provide valuable knowledge and insights to research, [176][177][178][179][180][181] encourage recruitment through publicity, 177,179,180 improve quality, relevance and impact of research, [182][183][184][185][186] and potentially help to meet recruitment targets. 172 Service users in England contribute financially to publicly funded research, so, arguably, have a right to be involved 186,187 and can personally benefit from their involvement.…”

Section: Introductionmentioning

confidence: 99%

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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BackgroundThe prevalence of type 2 diabetes mellitus (T2DM) and of cardiovascular disease (CVD) is believed to be higher among people with intellectual disability (ID) than in the general population. However, research on prevalence and prevention in this population is limited.ObjectivesThe objectives of this programme of work were to establish a programme of research that would significantly enhance the knowledge and understanding of impaired glucose regulation (IGR) and T2DM in people with ID; to test strategies for the early identification of IGR and T2DM in people with ID; and to develop a lifestyle education programme and educator training protocol to promote behaviour change in a population with ID and IGR (or at a high risk of T2DM/CVD).SettingLeicestershire, UK.ParticipantsAdults with ID were recruited from community settings, including residential homes and family homes. Adults with mild to moderate ID who had an elevated body mass index (BMI) of ≥ 25 kg/m2and/or IGR were invited to take part in the education programme.Main outcome measuresThe primary outcome of the screening programme was the prevalence of screen-detected T2DM and IGR. The uptake, feasibility and acceptability of the intervention were assessed.Data sourcesParticipants were recruited from general practices, specialist ID services and clinics, and through direct contact.ResultsA total of 930 people with ID were recruited to the screening programme: 58% were male, 80% were white and 68% were overweight or obese. The mean age of participants was 43.3 years (standard deviation 14.2 years). Bloods were obtained for 675 participants (73%). The prevalence of previously undiagnosed T2DM was 1.3% [95% confidence interval (CI) 0.5% to 2%] and of IGR was 5% (95% CI 4% to 7%). Abnormal IGR was more common in those of non-white ethnicity; those with a first-degree family history of diabetes; those with increasing weight, waist circumference, BMI, diastolic blood pressure or triglycerides; and those with lower high-density lipoprotein cholesterol. We developed a lifestyle educational programme for people with ID, informed by findings from qualitative stakeholder interviews (health-care professionals,n = 14; people with ID,n = 7) and evidence reviews. Subsequently, 11 people with ID (and carers) participated in pilot education sessions (two groups) and five people attended education for the feasibility stage (one group). We found that it was feasible to collect primary outcome measures on physical activity and sedentary behaviour using wrist-worn accelerometers. We found that the programme was relatively costly, meaning that large changes in activity or diet (or a reduction in programme costs) would be necessary for the programme to be cost-effective. We also developed a quality development process for assessing intervention fidelity.LimitationsWe were able to screen only around 30% of the population and involved only a small number in the piloting and feasibility work.ConclusionsThe results from this programme of work have significantly enhanced the existing knowledge and understanding of T2DM and IGR in people with ID. We have developed a lifestyle education programme and educator training protocol to promote behaviour change in this population.Future workFurther work is needed to evaluate the STOP Diabetes intervention to identify cost-effective strategies for its implementation.Trial registrationClinicalTrials.gov NCT02513277.FundingThe National Institute for Health Research Programme Grants for Applied Research programme and will be published in full inHealth Research Programme Grants for Applied Research; Vol. 5, No. 11. See the NIHR Journals Library website for further project information.

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Service user involvement in nursing, midwifery and health visiting research: A review of evidence and practice

Cited by 95 publications

References 63 publications

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Developing capacity-building activities for mental health system strengthening in low- and middle-income countries for service users and caregivers, service planners, and researchers

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

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