Steve Gillard

Patient and Public Involvement in the Coproduction of Knowledge: Reflection on the Analysis of Qualitative Data in a Mental Health Study

Patient and public involvement in health research is increasingly well established internationally, but the impacts of involvement on the research process are hard to evaluate. We describe a process of qualitative data analysis in a mental health research project with a high level of mental health service user and carer involvement, and reflect critically on how we produced our findings. Team members not from research backgrounds sometimes challenged academic conventions, leading to complex findings that would otherwise have been missing. An essential component of how we coproduced knowledge involved retaining methodological flexibility so that nonconventional research voices in the team could situate and critique what was conventionally known. Deliberate and transparent reflection on how “who we are” informed the knowledge we produced was integral to our inquiry. We conclude that reflecting on knowledge (co)production is a useful tool for evaluating the impact of patient and public involvement on health research.

Introducing peer worker roles into UK mental health service teams: a qualitative analysis of the organisational benefits and challenges

BackgroundThe provision of peer support as a component of mental health care, including the employment of Peer Workers (consumer-providers) by mental health service organisations, is increasingly common internationally. Peer support is strongly advocated as a strategy in a number of UK health and social care policies. Approaches to employing Peer Workers are proliferating. There is evidence to suggest that Peer Worker-based interventions reduce psychiatric inpatient admission and increase service user (consumer) empowerment. In this paper we seek to address a gap in the empirical literature in understanding the organisational challenges and benefits of introducing Peer Worker roles into mental health service teams.MethodsWe report the secondary analysis of qualitative interview data from service users, Peer Workers, non-peer staff and managers of three innovative interventions in a study about mental health self-care. Relevant data was extracted from interviews with 41 participants and subjected to analysis using Grounded Theory techniques. Organisational research literature on role adoption framed the analysis.ResultsPeer Workers were highly valued by mental health teams and service users. Non-peer team members and managers worked hard to introduce Peer Workers into teams. Our cases were projects in development and there was learning from the evolutionary process: in the absence of formal recruitment processes for Peer Workers, differences in expectations of the Peer Worker role can emerge at the selection stage; flexible working arrangements for Peer Workers can have the unintended effect of perpetuating hierarchies within teams; the maintenance of protective practice boundaries through supervision and training can militate against the emergence of a distinctive body of peer practice; lack of consensus around what constitutes peer practice can result in feelings for Peer Workers of inequality, disempowerment, uncertainty about identity and of being under-supported.ConclusionsThis research is indicative of potential benefits for mental health service teams of introducing Peer Worker roles. Analysis also suggests that if the emergence of a distinctive body of peer practice is not adequately considered and supported, as integral to the development of new Peer Worker roles, there is a risk that the potential impact of any emerging role will be constrained and diluted.

The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study

Objective To identify the factors that promote and compromise the implementation of reasonably adjusted healthcare services for patients with intellectual disabilities in acute National Health Service (NHS) hospitals. Design A mixed-methods study involving interviews, questionnaires and participant observation (July 2011–March 2013). Setting Six acute NHS hospital trusts in England. Methods Reasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments. Results Data collected included staff questionnaires (n=990), staff interviews (n=68), interviews with adults with intellectual disabilities (n=33), questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disabilities, and expert panel discussions (n=42). Hospital strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice often depended on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Major barriers included: lack of effective systems for identifying and flagging patients with intellectual disabilities, lack of staff understanding of the reasonable adjustments that may be needed, lack of clear lines of responsibility and accountability for implementing reasonable adjustments, and lack of allocation of additional funding and resources. Key enablers were the Intellectual Disability Liaison Nurse and the ward manager. Conclusions The evidence suggests that ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to vulnerable patients. The authors suggest that flagging the need for specific reasonable adjustments, rather than the vulnerable condition itself, may address some of the barriers. Further research is recommended that describes and quantifies the most frequently needed reasonable adjustments within the hospital pathways of vulnerable patient groups, and the most effective organisational infrastructure required to guarantee their use, together with resource implications.

Self‐care in mental health services: a narrative review

Self-care is an important approach to the management of long-term health conditions and in preventing ill-health by living a healthy lifestyle. The concept has been used to a limited extent in relation to mental health, but it overlaps with the related concepts of recovery, self-management and self-help. These related concepts all entail individuals having more choice and control over treatment and a greater role in recovery and maintaining their health and well-being. This paper reviews qualitative empirical research that provides information on the nature of self-care in mental health from the perspective of people experiencing mental health problems. Twenty qualitative studies were identified from a systematic search of the literature. The methods used in these studies were critically appraised and key themes across studies identified self-care behaviours and processes supporting self-care. The paper also highlights challenges to this approach in mental health and provides a conceptual framework of the relationships between self-care support, self-care behaviours and strategies, and well-being for the individual. It also highlights limitations in the current evidence base and identifies areas for future research.

Developing a change model for peer worker interventions in mental health services: a qualitative research study

AIMSnA range of peer worker roles are being introduced into mental health services internationally. There is some evidence that attests to the benefits of peer workers for the people they support but formal trial evidence in inconclusive, in part because the change model underpinning peer support-based interventions is underdeveloped. Complex intervention evaluation guidance suggests that understandings of how an intervention is associated with change in outcomes should be modelled, theoretically and empirically, before the intervention can be robustly evaluated. This paper aims to model the change mechanisms underlying peer worker interventions.nnnMETHODSnIn a qualitative, comparative case study of ten peer worker initiatives in statutory and voluntary sector mental health services in England in-depth interviews were carried out with 71 peer workers, service users, staff and managers, exploring their experiences of peer working. Using a Grounded Theory approach we identified core processes within the peer worker role that were productive of change for service users supported by peer workers.nnnRESULTSnKey change mechanisms were: (i) building trusting relationships based on shared lived experience; (ii) role-modelling individual recovery and living well with mental health problems; (iii) engaging service users with mental health services and the community. Mechanisms could be further explained by theoretical literature on role-modelling and relationship in mental health services. We were able to model process and downstream outcomes potentially associated with peer worker interventions.nnnCONCLUSIONSnAn empirically and theoretically grounded change model can be articulated that usefully informs the development, evaluation and planning of peer worker interventions.

“Staying native”: coproduction in mental health services research

Purpose – The purpose of this paper is to describe a recent experiment in research coproduction in an evaluation of service planning at a London Mental Health NHS Trust. The paper aims to consider whether members of the research team who have themselves been users of mental health services are able to contribute to the research process as “experts by experience”, or if their experiential knowledge is “colonized” within the academic research team. n nDesign/methodology/approach – A qualitative, comparative case study approach was adopted, using structured observations and semi-structured interviews. Researchers reflective accounts and a reflective focus group were employed to explore the process of coproduction. n nFindings – The paper concludes that, far from “colonising” expertise by experience, the experiment builds local capacity in research coproduction and usefully informs a service planning process that reflects the priorities and concerns of a range of stakeholders. n nResearch limitations/implications – The paper describes a small, local experiment in research coproduction and so findings are limited in their scope. However, the study demonstrates an effective methodological approach to evaluating, empirically, the impact of coproduction on the health services research (HSR) process. n nPractical implications – The paper demonstrates the potential for repeated exercises in coproduction to build capacity in collaborative approaches to both HSR and service planning. n nOriginality/value – The involvement of experts by experience is increasingly a policy requirement in the domains of both health service planning and HSR in the UK. There are very few empirical studies that evaluate the impact of that coproduction.

Introducing New Peer Worker Roles into Mental Health Services in England: Comparative Case Study Research Across a Range of Organisational Contexts

AbstractA wide variety of peer worker roles is being introduced into mental health services internationally. Empirical insight into whether conditions supporting role introduction are common across organisational contexts is lacking. A qualitative, comparative case study compared the introduction of peer workers employed in the statutory sector, voluntary sector and in organisational partnerships. We found good practice across contexts in structural issues including recruitment and training, but differences in expectations of the peer worker role in different organisational cultures. Issues of professionalism and practice boundaries were important everywhere but could be understood very differently, sometimes eroding the distinctiveness of the role.n

Producing different analytical narratives, coproducing integrated analytical narrative: a qualitative study of UK detained mental health patient experience involving service user researchers

Involvement of people who use health services as researchers is increasingly widely practised internationally, but methodological enquiry into how involvement impacts on research findings is lacking. A qualitative study of the experiences of people detained under the UK Mental Health Act (1983) used secondary analysis to explore the extent to which mental health service user researchers produced different interpretive narratives to conventional university researchers working on the same research team, and the potential to coproduce integrated analytical narrative to inform service improvement. We found we were able to articulate a range of situated analytical narratives on the detained patient experience and, through negotiating what each narrative meant in relation to the others, to coproduce an integrated analytical narrative that moved beyond what was already known about the detained patient experience. We concluded that research involving mental health service user researchers can coproduce new knowledge that might usefully inform service improvement.

The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study.

BackgroundThere has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors.MethodsThis was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (nu2009=u2009990); questionnaires to carers (nu2009=u200988); interviews with: hospital staff including senior managers, nurses and doctors (nu2009=u200968) and carers (nu2009=u200937); observation of in-patients with intellectual disabilities (nu2009=u20098); monitoring of incident reports (nu2009=u2009272) and complaints involving people with intellectual disabilities.ResultsStaff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult.The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders.ConclusionsThe events leading to avoidable harm for patients with intellectual disabilities are not always recognised as safety incidents, and may be difficult to attribute as causal to the harm suffered. Acts of omission (failure to give care) are more difficult to recognise, capture and monitor than acts of commission (giving the wrong care). In order to improve patient safety for this group, the reasonable adjustments needed by individual patients should be identified, documented and monitored.

Challenges to undertaking randomised trials with looked after children in social care settings.

BackgroundRandomised controlled trials (RCTs) are widely viewed as the gold standard for assessing effectiveness in health research; however many researchers and practitioners believe that RCTs are inappropriate and un-doable in social care settings, particularly in relation to looked after children. The aim of this article is to describe the challenges faced in conducting a pilot study and phase II RCT of a peer mentoring intervention to reduce teenage pregnancy in looked after children in a social care setting.MethodsInterviews were undertaken with social care professionals and looked after children, and a survey conducted with looked after children, to establish the feasibility and acceptability of the intervention and research design.ResultsBarriers to recruitment and in managing the intervention were identified, including social workers acting as informal gatekeepers; social workers concerns and misconceptions about the recruitment criteria and the need for and purpose of randomisation; resource limitations, which made it difficult to prioritise research over other demands on their time and difficulties in engaging and retaining looked after children in the study.ConclusionsThe relative absence of a research infrastructure and culture in social care and the lack of research support funding available for social care agencies, compared to health organisations, has implications for increasing evidence-based practice in social care settings, particularly in this very vulnerable group of young people.