Rosemary Davies

Effective support for those who are “hard to engage”: a qualitative user-led study

Abstract Background: Up to 30% of people with mental health problems drop out of contact with mental health services with negative implications for continuity of care. Services with an assertive outreach approach aim to sustain engagement. Aims: This study explored the perceptions and needs of people often described as “hard to engage” in order to understand more about how services can best support them. Methods: This was a service user led qualitative study involving participants with serious mental health problems. Interviews were held with 33 people using assertive outreach or voluntary sector services and 15 people who had disengaged from services. Data were analysed for emergent themes. Results: Relationships with staff were central to maintaining engagement with services. Almost all participants wanted help for their problems, and preferred services that responded to their priorities and offered practical support with everyday living. Negative perceptions of inpatient care were common, and a focus on medication put many participants off mental health services. Many participants were not receiving support for the full range of their complex needs. Conclusions: Difficulties in sustaining engagement with mental health services does not necessarily mean that people do not want help. Participants were intolerant of service-determined priorities.

A Contact-Based Intervention for People Recently Discharged from Inpatient Psychiatric Care: A Pilot Study

People recently discharged from inpatient psychiatric care are at high risk of suicide and self-harm, with 6% of all suicides in England occurring in the 3 months after discharge. There is some evidence from a randomized trial carried out in the United States in the 1960s–70s that supportive letters sent by psychiatrists to high-risk patients in the period following hospital discharge resulted in a reduction in suicide. The aim of the current pilot study was to assess the feasibility of conducting a similar trial, but in a broader group of psychiatric discharges, in the context of present day UK clinical practice. The intervention was piloted on 3 psychiatric inpatient wards in southwest England. On 2 wards a series of 8 letters were sent to patients over the 12 months after discharge and 6 letters were sent from the third ward over a 6 month period. A total of 102 patients discharged from the wards received at least 1 letter, but only 45 (44.1%) received the full series of letters. The main reasons for drop-out were patient opt-out (n = 24) or readmission (n = 26). In the context of a policy of intensive follow-up post-discharge, qualitative interviews with service users showed that most already felt adequately supported and the intervention added little to this. Those interviewed felt that it was possible that the intervention might benefit people new to or with little follow-up from mental health services but that fewer letters should be mailed.

What’s in a “research passport”? A collaborative autoethnography of institutional approvals in public involvement in research

Plain English summaryPlain English summaryThe article analyses the process of securing permissions for members of the public (we refer to them as “research partners”) and academics involved in a qualitative study of public involvement in research (PIR) across eight health sciences projects in England and Wales. All researchers, including research partners, need to obtain a “research passport” from UK NHS trusts where they intend to carry out research. The article presents the experiences and observations of the authors, who all went through the process.Research partners encountered many challenges, as the overall bureaucratic procedures proved burdensome. The effects were felt by the academics too who had to manage the whole process. This influenced the way research partners and academics built social and personal relationships required for the successful conduct of the project. We also discuss the tensions that emerged around the issue of whether research partners should be treated as a professional category on their own, and other issues that influenced the PIR processes.In the concluding section, we make a number of practical recommendations. Project teams should allow enough time to go through all the hurdles and steps required for institutional permissions, and should plan in advance for the right amount of time and capacity needed from project leaders and administrators. Bureaucratic and organisational processes involved in PIR can sometimes produce unanticipated and unwanted negative effects on research partners. Our final recommendation to policy makers is to focus their efforts on making PIR bureaucracy more inclusive and ultimately more democratic.AbstractBackground In the growing literature on public involvement in research (PIR), very few works analyse PIR organizational and institutional dimensions in depth. We explore the complex interactions of PIR with institutions and bureaucratic procedures, with a focus on the process of securing institutional permissions for members of the public (we refer to them as “research partners”) and academics involved in health research. Methods We employ a collaborative autoethnographic approach to describe the process of validating “research passports” required by UK NHS trusts, and the individual experiences of the authors who went through this journey – research partners and academics involved in a qualitative study of PIR across eight health sciences projects in England and Wales. Results Our findings show that research partners encountered many challenges, as the overall bureaucratic procedures and the emotional work required to deal with them proved burdensome. The effects were felt by the academics too who had to manage the whole process at an early stage of team building in the project. Our thematic discussion focuses on two additional themes: the emerging tensions around professionalisation of research partners, and the reflexive effects on PIR processes. Conclusions In the concluding section, we make a number of practical recommendations. Project teams should allow enough time to go through all the hurdles and steps required for institutional permissions, and should plan in advance for the right amount of time and capacity needed from project leaders and administrators. Our findings are a reminder that the bureaucratic and organisational structures involved in PIR can sometimes produce unanticipated and unwanted negative effects on research partners, hence affecting the overall quality and effectiveness of PIR. Our final recommendation to policy makers is to focus their efforts on making PIR bureaucracy more inclusive and ultimately more democratic.