Series: Public engagement with research. Part 3: Sharing power and building trust through partnering with communities in primary care research.

BACKGROUND: This article focuses on potential strategies to support primary care researchers in working in partnership with the public and healthcare professionals. Partnership working can potentially to improve the relevance and usefulness of research and ensure better research and health outcomes. DISCUSSION: We describe what we mean by partnership working and the importance of reflecting on power and building trusting relationships. To share power in partnership working, it is essential to critically reflect on the multiple dimensions of power, their manifestations, and your own power. Power can influence relationships and therefore, it is essential to build trust with partners. Next, we outline how the context of primary care research and decisions about who you work with and how to work together, are vital considerations that are imbued with power. Lastly, we suggest different ways of working in partnership to address different dimensions of power. We provide examples from primary care research across Europe regarding how to recognise, tackle, and challenge, invisible, hidden and visible power. CONCLUSION: We conclude by proposing three calls to actions to encourage researchers working in primary care to consider the multiple dimensions of power and move towards partnership working. First is to use participatory methods to improve the inclusivity of your research. Second is to include patients and the public in decisions about the design, delivery and development of research and its outcomes. Third is to address various systemic and institutional barriers which hinder partnership working.

Partnership approaches to primary care research can potentially improve the relevance, usefulness and inclusivity of research.Working in partnership involves researchers and the public sharing power in important research decisions and building trusting relationships.Recognising and addressing power differentials and building trusting relationships requires time and effort.

Patient influence on general practice service improvement decision making: a participatory research mixed-methods intervention study.

BACKGROUND: Health policy promotes patient participation in decision making about service organisation. In English general practice this happens through contractually required patient participation groups (PPGs). However, there are problems with the enactment of PPGs that have not been systematically addressed. AIM: To observe how a co-designed theory-informed intervention can increase representational legitimacy and facilitate power sharing to support PPGs to influence decision making about general practice service improvement. DESIGN AND SETTING: Participatory action research to implement the intervention in two general practices in the North of England was undertaken. The intervention combined two different participatory practices: partnership working involving externally facilitated meetings with PPG members and staff; and consultation with the wider patient population using a bespoke discrete choice experiment (DCE). METHOD: To illustrate decision making in PPGs, qualitative data are presented from participant observation notes and photographed visual data generated through participatory methods. The DCE results are summarised to illustrate how wider population priorities contributed to overall decision making. Observational data were thematically analysed using normalisation process theory with support from a multi-stakeholder co-research group. RESULTS: In both general practices, patients influenced decision making during PPG meetings and through the DCE, resulting in bespoke patient-centred action plans for service improvement. Power asymmetries were addressed through participatory methods, clarification of PPG roles in decision making, and addressing representational legitimacy through wider survey consultation. CONCLUSION: Combining participatory practices and facilitated participatory methods enabled patients to influence decision making about general practice service improvement. The policy of mandatory PPGs needs updating to recognise the need to resource participation in a meaningful way.

'That's how we got around it': a qualitative exploration of healthcare professionals' experiences of care provision for asylum applicants' with limited English proficiency in UK contingency accommodation.

OBJECTIVES: The inadequate provision of language interpretation for people with limited English proficiency (LEP) is a determinant of poor health, yet interpreters are underused. This research explores the experiences of National Health Service (NHS) staff providing primary care for people seeking asylum, housed in contingency accommodation during COVID-19. This group often have LEP and face multiple additional barriers to healthcare access. Language discrimination is used as a theoretical framework. The potential utility of this concept is explored as a way of understanding and addressing inequities in care. DESIGN: Qualitative research using semistructured interviews and inductive thematic analysis. SETTING: An NHS primary care service for people seeking asylum based in contingency accommodation during COVID-19 housing superdiverse residents speaking a wide spectrum of languages. PARTICIPANTS: Ten staff including doctors, nurses, mental health practitioners, healthcare assistants and students participated in semistructured online interviews. Some staff were redeployed to this work due to the pandemic. RESULTS: All interviewees described patients' LEP as significant. Inadequate provision of interpretation services impacted the staff's ability to provide care and compromised patient safety. Discrimination, such as that based on migration status, was recognised and challenged by staff. However, inequity based on language was not articulated as discrimination. Instead, insufficient and substandard interpretation was accepted as the status quo and workarounds used, such as gesticulating or translation phone apps. The theoretical lens of language discrimination shows how this propagates existing social hierarchies and further disadvantages those with LEP. CONCLUSIONS: This research provides empirical evidence of how the inadequate provision of interpreters forces the hand of healthcare staff to use shortcuts. Although this innovative 'tinkering' allows staff to get the job done, it risks normalising structural gaps in care provision for people with LEP. Policy-makers must rethink their approach to interpretation provision which prioritises costs over quality. We assert that the concept of language discrimination is a valuable framework for clinicians to better identify and articulate unfair treatment on the grounds of LEP.

Interventions to Improve the Response of Professionals to Children Exposed to Domestic Violence and Abuse: A Systematic Review.

Exposure of children to domestic violence and abuse (DVA) is a form of child maltreatment with short- and long-term behavioural and mental health impact. Health care professionals are generally uncertain about how to respond to domestic violence and are particularly unclear about best practice with regards to children's exposure and their role in a multiagency response. In this systematic review, we report educational and structural or whole-system interventions that aim to improve professionals' understanding of, and response to, DVA survivors and their children. We searched 22 bibliographic databases and contacted topic experts for studies reporting quantitative outcomes for any type of intervention aiming to improve professional responses to disclosure of DVA with child involvement. We included interventions for physicians, nurses, social workers and teachers. Twenty-one studies met the inclusion criteria: three randomised controlled trials (RCTs), 18 pre-post intervention surveys. There were 18 training and three system-level interventions. Training interventions generally had positive effects on participants' knowledge, attitudes towards DVA and clinical competence. The results from the RCTs were consistent with the before-after surveys. Results from system-level interventions aimed to change organisational practice and inter-organisational collaboration demonstrates the benefit of coordinating system change in child welfare agencies with primary health care and other organisations. Implications for policy and research are discussed. © 2015 The Authors. Child Abuse Review published by John Wiley & Sons Ltd. 'We searched 22 bibliographic databases and contacted topic experts'. KEY PRACTITIONER MESSAGES: We reviewed published evidence on interventions aimed at improving professionals' practice with domestic violence survivors and their children.Training programmes were found to improve participants' knowledge, attitudes and clinical competence up to a year after delivery.Key elements of successful training include interactive discussion, booster sessions and involving specialist domestic violence practitioners.Whole-system approaches aiming to promote coordination and collaboration across agencies appear promising but require funding and high levels of commitment from partners. 'Training programmes were found to improve participants' knowledge, attitudes and clinical competence up to a year after delivery'.

Training on domestic violence and child safeguarding in general practice: a mixed method evaluation of a pilot intervention.

BACKGROUND: Children's exposure to domestic violence is a type of child maltreatment, yet many general practice clinicians remain uncertain of their child safeguarding responsibilities in the context of domestic violence. We developed an evidence-based pilot training on domestic violence and child safeguarding for general practice teams. The aim of this study was to test and evaluate its feasibility, acceptability and the direction of change in short-term outcome measures. METHODS: We used a mixed method design which included a pre-post questionnaire survey, qualitative analysis of free-text comments, training observations, and post-training interviews with trainers and participants. The questionnaire survey used a validated scale to measure participants' knowledge, confidence/ self-efficacy, and beliefs/ attitudes towards domestic violence and child safeguarding in the context of domestic violence. RESULTS: Eleven UK general practices were recruited (response rate 55%) and 88 clinicians attended the pilot training. Thirty-seven participants (42%) completed all pre-post questionnaires and nine were interviewed. All training sessions were observed. All six trainers were interviewed. General practice clinicians valued the training materials and teaching styles, opportunities for reflection and delivery by local trainers from both health and children's social services. The training elicited positive changes in total outcome score and knowledge and confidence/ self-efficacy sub scores which remained at 3-month follow up. However, the mean sub score of beliefs and attitudes did not change and the qualitative results were mixed. Two interviewees described changes in their clinical practice. Participants' suggestions for improving the training included incorporating more ethnic and class diversity in the material, using cases with multiple socio economic disadvantages, and addressing multi-agency collaboration in the context of changing and under-resourced services for children. CONCLUSIONS: The pilot training for general practice on child safeguarding in the context of domestic violence was feasible and acceptable. It elicited positive changes in clinicians' knowledge and confidence/ self-esteem. The extent to which clinical behaviour changed is unclear, but there are indications of changes in practice by some clinicians. The pilot training requires further refinement and evaluation before implementation.

Juggling confidentiality and safety: a qualitative study of how general practice clinicians document domestic violence in families with children.

BACKGROUND: Domestic violence and abuse (DVA) and child safeguarding are interlinked problems, impacting on all family members. Documenting in electronic patient records (EPRs) is an important part of managing these families. Current evidence and guidance, however, treats DVA and child safeguarding separately. This does not reflect the complexity clinicians face when documenting both issues in one family. AIM: To explore how and why general practice clinicians document DVA in families with children. DESIGN AND SETTING: A qualitative interview study using vignettes with GPs and practice nurses (PNs) in England. METHOD: Semi-structured telephone interviews with 54 clinicians (42 GPs and 12 PNs) were conducted across six sites in England. Data were analysed thematically using a coding frame incorporating concepts from the literature and emerging themes. RESULTS: Most clinicians recognised DVA and its impact on child safeguarding, but struggled to work out the best way to document it. They described tensions among the different roles of the EPR: a legal document; providing continuity of care; information sharing to improve safety; and a patient-owned record. This led to strategies to hide information, so that it was only available to other clinicians. CONCLUSION: Managing DVA in families with children is complex and challenging for general practice clinicians. National integrated guidance is urgently needed regarding how clinicians should manage the competing roles of the EPR, while maintaining safety of the whole family, especially in the context of online EPRs and patient access.

General practice clinicians' perspectives on involving and supporting children and adult perpetrators in families experiencing domestic violence and abuse.

BACKGROUND: Government and professional guidance encourages general practice clinicians to identify and refer children who experience domestic violence and abuse (DVA) but there is scant understanding of how general practice clinicians currently work with DVA in families. OBJECTIVES: The study explored general practice clinicians' practice with children and their parents experiencing DVA and reflected on the findings in the light of current research and policy guidelines. METHODS: Semi-structured interviews with 54 clinicians (42 GPs and 12 practice nurses/nurse practitioners) were conducted across six sites in England. Data were analysed using current literature and emerging themes. Data presented here concern clinicians' perspectives on engaging with family members when a parent discloses that she is experiencing DVA. RESULTS: When a parent disclosed DVA, clinicians were more likely to consider talking to abusive fathers than talking to children about the abuse. Perspectives varied according to whether consultation opportunities arose, risks, consent and confidentiality. Perceptions of 'patienthood', relationships and competence shaped clinicians' engagement. Perpetrators were seen as competent informers and active service users, with potential for accepting advice and support. Clinicians were more hesitant in talking with children. Where this was considered, children tended to be seen as passive informants, only two GPs described direct and ongoing consultations with children and providing them with access to support. CONCLUSION: Clinicians appear more inclined to engage directly with abusive fathers than children experiencing DVA. Clinician skills and confidence to talk directly with children experiencing DVA, in child sensitive ways, should be developed through appropriate training.

GP training in out-of-hours care: implications for the future workforce.

AIMS: To understand GP trainees' experience of out-of-hours (OOH) training in England; whether it is achieving educational aims, and to highlight potential improvements. Additionally to explore factors that influence the decision to work in OOH care. METHODS: An online survey was sent to 1091 GP trainees in England. Odds ratios were calculated for factors correlating with intention to work in OOH, or confidence and effectiveness in OOH work. Free text responses were coded and organised thematically. RESULTS: Trainees' experience of OOH care influences the decision to work there once qualified. Although this experience has positively influenced over three-quarters of trainees, it can be improved. Training is not achieving competencies in managing psychiatric emergencies and personal safety. Half of trainees received formal teaching in OOH skills; 3% receiving assessments in telephone triage. Only a quarter of trainees had worked with their usual GP trainer. Influential features of training included trainer enthusiasm and continuity, familiarity with the workplace, and confidence in OOH skills. Financial and lifestyle considerations were also important. CONCLUSION: OOH training in England has an impact on the future workforce and could be improved. The planned transition to a 4-year GP training structure offers an opportunity to address this.

'I wouldn't push that further because I don't want to lose her': a multiperspective qualitative study of behaviour change for long-term conditions in primary care.

BACKGROUND: Health outcomes for long-term conditions (LTCs) can be improved by lifestyle, dietary and condition management-related behaviour change. Primary care is an important setting for behaviour change work. Practitioners have identified barriers to this work, but there is little evidence examining practices of behaviour change in primary care consultations and how patients and practitioners perceive these practices. OBJECTIVE: To examine how behaviour change is engaged with in primary care consultations for LTCs and investigate how behaviour change is perceived by patients and practitioners. DESIGN: Multiperspective, longitudinal qualitative research involving six primary health-care practices in England. Consultations between patients with LTCs and health-care practitioners were audio-recorded. Semi-structured interviews were completed with patients and practitioners, using stimulated recall. Patients were re-interviewed 3 months later. Framework analysis was applied to all data. PARTICIPANTS: Thirty-two people with at least one LTC (chronic obstructive pulmonary disease, diabetes, asthma and coronary heart disease) and 10 practitioners. RESULTS: Behaviour change talk in consultations was rare and, when it occurred, was characterized by deflection and diffidence on the part of practitioners. Patient motivation tended to be unaddressed. While practitioners positioned behaviour change work as outside their remit, patients felt uncertain about, yet responsible for, this work. Practitioners raised concerns that this work could damage other aspects of care, particularly the patient-practitioner relationship. CONCLUSION: Behaviour change work is often deflected or deferred by practitioners in consultations, who nevertheless vocalize support for its importance in interviews. This discrepancy between practitioners' accounts and behaviours needs to be addressed within primary health-care organizations.

A motivational intervention for patients with COPD in primary care: qualitative evaluation of a new practitioner role.

BACKGROUND: Long-term conditions such as chronic obstructive pulmonary disease (COPD) are growing challenges for health services. Psychosocial co-morbidity is associated with poorer quality of life and greater use of health care in these patients but is often un-diagnosed or inadequately treated in primary care, where most care for these patients is provided. We developed a brief intervention, delivered by 'liaison health workers' (LHWs), to address psychosocial needs in the context of an integrated approach to physical and mental health. We report a qualitative study in which we characterize the intervention through the experience of the patients receiving it and examine how it was incorporated into primary care. METHODS: Qualitative study using patient and practice staff informants. We audio-recorded interviews with 29 patients offered the intervention (three had declined it or withdrawn) and 13 practice staff (GPs, nurses and administrators). Analysis used a constant comparative approach. RESULTS: Most patients were enthusiastic about the LHWs, describing the intervention as mobilizing their motivation for self-management. By contrast with other practitioners, patients experienced the LHWs as addressing their needs holistically, being guided by patient needs rather than professional agendas, forming individual relationships with patients and investing in patients and their capacity to change. Practices accommodated and accepted the LHWs, but positioned them as peripheral to and separate from the priority of physical care. CONCLUSIONS: Despite being a short-term intervention, patients described it as having enduring motivational benefits. The elements of the intervention that patients described map onto the key features of motivating interventions described by Self-Determination Theory. We suggest that the LHWs motivated patients to self-management by: (i) respecting patients' competence to decide on needs and priorities; (ii) forming relationships with patients as individuals; and (iii) fostering patients' sense of autonomy. While truly integrated primary care for patients with long-term conditions such as COPD remains elusive, existing practice staff might adopt elements of the LHWs' approach to enhance motivational change in patients with long-term conditions such as COPD.

A qualitative study of patient choices in using emergency health care for long-term conditions: the importance of candidacy and recursivity.

OBJECTIVE: We aimed to explore how patients with long-term conditions choose between available healthcare options during a health crisis. METHODS: Patients in North-West England with one or more of four long-term conditions were invited to take part in a questionnaire cohort study of healthcare use. Semi-structured interviews were conducted with a sub-sample of fifty consenting patients. Data were analysed qualitatively, using a framework approach. RESULTS: Patients described using emergency care only in response to perceived urgent need. Their judgements about urgency of need, and their choices about what services to use were guided by previous experiences of care, particularly how accessible services were and the perceived expertise of practitioners. CONCLUSION: Recursivity and candidacy provide a framework for understanding patient decision-making around emergency care use. Patients were knowledgeable and discriminating users of services, drawing on experiential knowledge of healthcare to choose between services. Their sense of 'candidacy' for specific emergency care services, was recursively shaped by previous experiences. PRACTICE IMPLICATIONS: Strategies that emphasise the need to educate patients about healthcare services use alone are unlikely to change care-seeking behaviour. Practitioners need to modify care experiences that recursively shape patients' judgements of candidacy and their perceptions of accessible expertise in alternative services.

How QOF is shaping primary care review consultations: a longitudinal qualitative study.

BACKGROUND: Long-term conditions (LTCs) are increasingly important determinants of quality of life and healthcare costs in populations worldwide. The Chronic Care Model and the NHS and Social Care Long Term Conditions Model highlight the use of consultations where patients are invited to attend a consultation with a primary care clinician (practice nurse or GP) to complete a review of the management of the LTC. We report a qualitative study in which we focus on the ways in which QOF (Quality and Outcomes Framework) shapes routine review consultations, and highlight the tensions exposed between patient-centred consulting and QOF-informed LTC management. METHODS: A longitudinal qualitative study. We audio-recorded consultations of primary care practitioners with patients with LTCs. We then interviewed both patients and practitioners using tape-assisted recall. Patient participants were followed for three months during which the research team made weekly contact and invited them to complete weekly logs about their health service use. A second interview at three months was conducted with patients. Analysis of the data sets used an integrative framework approach. RESULTS: Practitioners view consultations as a means of 'surveillance' of patients. Patients present themselves, often passively, to the practitioner for scrutiny, but leave the consultation with unmet biomedical, informational and emotional needs. Patients perceived review consultations as insignificant and irrelevant to the daily management of their LTC and future healthcare needs. Two deviant cases, where the requirements of the 'review' were subsumed to meet the patient's needs, focused on cancer and bereavement. CONCLUSIONS: Routine review consultations in primary care focus on the biomedical agenda set by QOF where the practitioner is the expert, and the patient agenda unheard. Review consultations shape patients' expectations of future care and socialize patients into becoming passive subjects of 'surveillance'. Patient needs outside the narrow protocol of the review are made invisible by the process of review except in extreme cases such as anticipating death and bereavement. We suggest how these constraints might be overcome.

Operationalising unscheduled care policy: a qualitative study of healthcare professionals' perspectives.

BACKGROUND: UK health policy aims to reduce the use of unscheduled care, by increasing proactive and preventative management of patients with long-term conditions in primary care. AIM: The study explored healthcare professionals' understanding of why patients with long-term conditions use unscheduled care, and the healthcare professionals' understanding of their role in relation to reducing the use of unscheduled care. DESIGN AND SETTING: Qualitative study interviewing different types of healthcare professionals providing primary care or unscheduled care services in northwest England. METHOD: Semi-structured interviews were conducted with 29 healthcare professionals (six GPs; five out-of-hours GPs; four emergency department doctors; two practice nurses; three specialist nurses; two district nurses; seven active case managers). Data were analysed using framework analysis. RESULTS: Healthcare professionals viewed the use of unscheduled care as a necessary component of care for patients with long-term conditions. Those whose roles involved working to targets to reduce the use of unscheduled care described a tension between this and delivering optimum patient care. Three approaches to reducing unscheduled care were described: optimising the system; negotiating the system; and optimising the patient. CONCLUSION: Current policy to reduce the use of unscheduled care does not take account of the perceptions of the healthcare professionals who are expected to implement them. Lipsky's theory of street-level bureaucrats provides a framework to understand how healthcare professionals respond to imposed policies. Healthcare professionals did not see the use of unscheduled care as a problem and there was limited commitment to the policy targets. Therefore, policy should aim for whole-system change rather than reliance on individual healthcare professionals to make changes in their practice.