Involving the public in health research in Latin America: making the case for mental health

Patient and Public Involvement and Engagement (PPIE) has been increasingly encouraged in health services and research over the last two decades. Particularly strong evidence has been presented with regard to the impact PPIE has in certain research areas, such as mental health. Involving the public in mental health research has the potential to improve the quality of research and reduce the power imbalance between researchers and participants. However, limitations can be frequent and include tokenistic involvement and lack of infrastructure and support. Nevertheless, PPIE has the potential to impact mental health research in the Latin American context, where existing policies already support public involvement in health research and where the burden of mental disorders is significant. There are many lessons to learn from the evidence of PPIE in other regions. Latin America now has the opportunity tackle one of today’s most important issues: effective health care service delivery for all, based on evidence from comprehensive health research. Health research policy; community-based participatory research; mental health; Latin America

Maternal six week postnatal check should assess for postnatal anxiety.

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Community ageing research 75+ study (CARE75+): an experimental ageing and frailty research cohort

IntroductionThe Community Ageing Research 75+ Study (CARE75+) is a longitudinal cohort study collecting an extensive range of health, social and economic data, with a focus on frailty, independence and quality of life in older age. CARE75+ is?the first international experimental frailty research cohort designed using Trial within Cohorts (TwiCs) methodology, to align applied epidemiological research with clinical trial evaluation of interventions to improve the health and well-being of older people living with frailty.Methods and analysisProspective cohort study using a TwiCs design. One thousand community-dwelling older people (=75?years) will be recruited from UK general practices. Nursing home residents, those with an estimated life expectancy of 3?months or less and people receiving palliative care will be excluded. Data collection assessments will be face to face in the person’s home at baseline, 6?months, 12 months, 24?months and 48 months, including assessments of frailty, cognition, mood, health-related quality of life, comorbidity, medications, resilience, loneliness, pain and self-efficacy. A modified protocol for follow-up by telephone or web based will be offered at 6?months. Consent will be sought for data linkage and invitations to additional studies, including intervention studies using the TwiCs design. A blood sample biobank will be established for future basic science studies.Ethics and disseminationCARE75+ was approved by the NRES Committee Yorkshire and the Humber—Bradford Leeds 10 October 2014 (14/YH/1120). Formal written consent is sought if an individual is willing to participate and has capacity to provide informed consent. Consultee assent is sought if an individual lacks capacity.Study results will be disseminated in peer-reviewed scientific journals and scientific conferences. Key study results will be summarised and disseminated to all study participants via newsletters, local older people’s publications and local engagement events. Results will be reported on a bespoke CARE75+ website

How do people with knee osteoarthritis perceive and manage flares? A qualitative study

Background Acute flares in people with osteoarthritis (OA) are poorly understood. There is uncertainty around the nature of flares, their impact, and how these are managed. Aim To explore understandings and experiences of flares in people with knee OA, and to describe self-management and help-seeking strategies. Design & setting Qualitative interview study of people with knee OA in England. Method Semi-structured interviews were undertaken with 15 people with knee OA. Thematic analysis was applied using constant comparison methods. Results The following four main themes were identified: experiencing pain; consequences of acute pain; predicting and avoiding acute pain; and response to acute pain. People with OA described minor episodes that were frequent, fleeting, occurred during everyday activity, had minimal impact, and were generally predictable. This contrasted with severe episodes that were infrequent, had greater impact, and were less likely to be predictable. The latter generally led to feelings of low confidence, vulnerability, and of being a burden. The term ‘flare’ was often used to describe the severe events but this was applied inconsistently and some would describe a flare as any increase in pain. Participants used numerous self-management strategies but tended to seek help when these had been exhausted, their symptoms led to emotional distress, disturbed sleep, or pain experience worse than usual. Previous experiences shaped whether people sought help and who they sought help from. Conclusion Severe episodes of pain are likely to be synonymous with flares. Developing a common language about flares will allow a shared understanding of these events, early identification, and appropriate management

Experiences of general practice care for self-harm: A qualitative study of young people's perspectives

Background Self-harm is a growing concern and rates of self-harm in young people (aged 12–25 years) presenting to general practice are rising. There is, however, little evidence about young people’s experiences of GP care and on accessing general practice. Aim To explore the help-seeking behaviours, experiences of GP care, and access to general practice of young people who self-harm. Design and setting In this qualitative study, semi-structured interviews were conducted with young people aged 16–25 years from England with previous self-harm behaviour. Method Interviews with 13 young people took place between April and November 2019. Young people were recruited from the community, third-sector organisations, and Twitter. Data were analysed using reflexive thematic analysis with principles of constant comparison. A patient and public involvement advisory group informed recruitment strategies and supported interpretation of findings. Results Young people described the avenues of help-seeking they employ and reflected on the mixed experiences of seeing GPs that can influence future help-seeking. Preconceptions and a lack of knowledge about accessing general practice were found to be barriers to help-seeking. GPs who attempt to understand the young person and establish relationship-based care can facilitate young people accessing general practice for self-harm. Conclusion It is important young people are aware of how to access general practice and that GPs listen, understand, and proactively follow-up young people who self-harm. Supporting young people with self-harm behaviour requires continuity of care

Improving recognition of anxiety and depression in rheumatoid arthritis: a qualitative study in a community clinic.

BACKGROUND: Comorbid anxiety and depression are common in patients with rheumatoid arthritis (RA) but are often under-recognised and treated, contributing to worse outcomes. National Institute for Health and Care Excellence (NICE) recommends that patients with RA should be offered a holistic annual review, including an assessment of mood. AIM: To explore patients' perspectives of anxiety and depression in RA and preferences for disclosure and management of mood problems. DESIGN AND SETTING: Qualitative interview study with patients recruited from a nurse-led RA annual review clinic in the Midlands, England. METHOD: Patients attending the clinic who scored ≥3 on the case-finding questions (PHQ-2 and GAD-2) were invited for interview. Data were analysed thematically using principles of constant comparison. RESULTS: Participants recognised a connection between their RA and mood, though this was perceived variably. Some lacked candidacy for care, normalising their mood problems. Fear of stigmatisation, a lack of time, and the perception that clinicians prioritise physical over mental health problems recursively affected help-seeking. Good communication and continuity of care were perceived to be integral to disclosure of mood problems. Participants expressed a preference for psychological therapies, though they reported problems accessing care. Some perceived medication to be offered as a 'quick fix' and feared potential drug interactions. CONCLUSION: Prior experiences can lead patients with RA and comorbid anxiety and depression to feel they lack candidacy for care. Provision of equal priority to mental and physical health problems by GPs and improved continuity of care could help disclosure of mood concerns. Facilitation of access to psychological therapies could improve outcomes for both mental and physical health problems

"I'm Managing My Diabetes between Two Worlds": Beliefs and Experiences of Diabetes Management in British South Asians on Holiday in the East-A Qualitative Study.

Background. Diabetes is disproportionately high among British South Asians compared to the general UK population. Whilst the migrant British South Asians group has received most attention on research related to diabetes management, little consideration has been given to impact of travel back to the East. This study aimed to explore the role of social networks and beliefs about diabetes in British South Asians, to better understand their management behaviours whilst holidaying in the East. Methods. Semistructured interviews were conducted in Greater Manchester. Forty-four participants were recruited using random and purposive sampling techniques. Interviews were analysed thematically using a constant comparison approach. Results. Migrant British South Asians expressed a strong preference to be in a hot climate; they felt they had a healthier lifestyle in the East and often altered or abandoned their diabetes medication. Information acquisition on diabetes and availability of social networks in the East was valued. Conclusion. Social networks in the East are a valued source of information and support for diabetes. The lack of adherence to medication whilst abroad suggests that some migrant British South Asians have a poor understanding of diabetes. Future research needs to explore whether patients are seeking professional advice on diabetes management prior to their extended holiday

The perceptions of general practice among Central and Eastern Europeans in the United Kingdom: A systematic scoping review

Background Around 2 million people have migrated from Central and Eastern Europe to the UK since 2004. The UK Central and Eastern European Community (UK-CEE) are disproportionately exposed to the social determinants of poor physical and mental health. Their health and healthcare beliefs remain under-researched, particularly regarding primary care. Objective This review explores UK-CEE community members' use and perceptions of UK general practice. Methods A systematic search of nine bibliographic databases identified 2094 publications that fulfilled the search criteria. Grey literature searches identified 16 additional relevant publications. Screening by title and abstract identified 201 publications of relevance, decreasing to 65 after full-text screening. Publications were critically appraised, with data extracted and coded. Thematic analysis using constant comparison allowed generation of higher-order thematic constructs. Results Full UK-CEE national representation was achieved. Comparatively low levels of GP registration were described, with ability, desire and need to engage with GP services shaped by the interconnected nature of individual community members' cultural and sociodemographic factors. Difficulties overcoming access and in-consultation barriers are common, with health expectations frequently unmet. Distrust and dissatisfaction with general practice often persist, promoting alternative health-seeking approaches including transnational healthcare. Marginalized UK-CEE community subgroups including Roma, trafficked and homeless individuals have particularly poor GP engagement and outcomes. Limited data on the impact of Brexit and COVID-19 could be identified. Conclusions Review findings demonstrate the need for codesigned approaches to remove barriers to engagement, culturally adapt and develop trust in GP care for UK-CEE individuals. Community Involvement Community members and stakeholders shaped the conceptualisation of the review question and validation of emergent themes

Help Seeking and Access to Primary Care for People from “Hard-to-Reach” Groups with Common Mental Health Problems

Background. In the UK, most people with mental health problems are managed in primary care. However, many individuals in need of help are not able to access care, either because it is not available, or because the individual's interaction with care-givers deters or diverts help-seeking. Aims. To understand the experience of seeking care for distress from the perspective of potential patients from “hard-to-reach” groups. Methods. A qualitative study using semi-structured interviews, analysed using a thematic framework. Results. Access to primary care is problematic in four main areas: how distress is conceptualised by individuals, the decision to seek help, barriers to help-seeking, and navigating and negotiating services. Conclusion. There are complex reasons why people from “hard-to-reach” groups may not conceptualise their distress as a biomedical problem. In addition, there are particular barriers to accessing primary care when distress is recognised by the person and help-seeking is attempted. We suggest how primary care could be more accessible to people from “hard-to-reach” groups including the need to offer a flexible, non-biomedical response to distress