— Case studies / Research

There has been a push from the research community to understand the value of including people with lived experience in such programs. While research suggests that people with lived experience may help a patient’s treatment, there is little evidence on including them in a team based program. This paper describes how our research team included a person with lived experience of psychosis in both the research and care process. We list some guiding principles we used to work through some of the common challenges that are mentioned in research. Lastly, experiences from the research team, lessons learned, and a personal statement from the person with lived experience (AA) are provided to help future researchers and people with lived experience collaborate in research and healthcare.

Methods: UK service users, carers and health professionals ( n= 185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories.

Results: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience.

Conclusions: Mental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed.

Aim: To explore the potential use of a tool designed to enhance collaborative antipsychotic prescribing from the perspectives of secondary care mental health service users, carers and professionals.

Methods: We conducted a qualitative study (semi-structured interviews and focus groups) using a convenience sample of 33 participants (10 mental health service users, 10 carers and 13 professionals) involved in antipsychotic prescribing in one Trust in the North of England. Participants were asked about the potential implementation of a tool to support SDM within secondary mental health services. Framework analysis incorporating the use of constant comparative method was used to analyse the data.

Results: The study identified a divergence in the views of service users and professionals, including a previously undocumented tendency for stakeholder groups to blame each other for potential implementation failure. This dissonance was shaped by meso and macro level influences relating to paternalism, legislative frameworks, accountability and lack of resources. Participants did not identify any macro level (policy or structural) facilitators to the use of the tool highlighting the negative impact of mental health contexts. Our study indicated that inter-individual factors are likely to be most important to implementation, given their potential to transcend meso and macro level barriers.

Conclusions: Consideration of the meso and macro level influences identified areas for potential intervention, including challenging professionals’ and service users’ perceptions of each other, rebalancing the notion of accountability within services and introducing new means for service user feedback on the quality of SDM. Multi-level strategies for facilitating the implementation of tools to support SDM are also presented.

Objectives: Co-develop and co-deliver a training intervention for health professionals in community mental health teams, which aimed to enhance service user and carer involvement in care planning. Develop a patient-reported outcome measure of service user involvement in care planning, design an audit tool and assess individual preferences for key aspects of care planning involvement. Evaluate the clinical effectiveness and the cost-effectiveness of the training. Understand the barriers to and facilitators of implementing service user- and carer-involved care planning. Disseminate resources to stakeholders.

Methods: A systematic review, focus groups and interviews with service users/carers/health professionals informed the training and determined the priorities underpinning involvement in care planning. Data from focus groups and interviews were combined and analysed using framework analysis. The results of the systematic review, focus groups/interviews and a review of the training interventions were synthesised to develop the final training intervention. To develop and validate the patient-reported outcome measure, items were generated from focus groups and interviews, and a psychometric analysis was conducted. Patient-reported outcome measure items and a three-round consensus exercise were used to develop an audit tool, and a stated preference survey was undertaken to assess individual preferences for key aspects of care planning. The clinical effectiveness and cost-effectiveness of the training were evaluated using a pragmatic cluster trial with cohort and cross-sectional samples. A nested longitudinal qualitative process evaluation using multiple methods, including semistructured interviews with key informants involved locally and nationally in mental health policy, practice and research, was undertaken. A mapping exercise was used to determine current practice, and semistructured interviews were undertaken with service users and mental health professionals from both the usual-care and the intervention arms of the trial at three time points (i.e. baseline and 6 months and 12 months post intervention).

Results: The results from focus groups (n = 56) and interviews (n = 74) highlighted a need to deliver training to increase the quality of care planning and a training intervention was developed. We recruited 402 participants to develop the final 14-item patient-reported outcome measure and a six-item audit tool. We recruited 232 participants for the stated preference survey and found that preferences were strongest for the attribute ‘my preferences for care are included in the care plan’. The training was delivered to 304 care co-ordinators working in community mental health teams across 10 NHS trusts. The cluster trial and cross-sectional survey recruited 1286 service users and 90 carers, and the primary outcome was the Health Care Training was positively evaluated. The results showed no statistically significant difference on the primary outcome (the Health Care Climate Questionnaire) (adjusted mean difference –0.064, 95% confidence interval –0.343 to 0.215; p = 0.654) or secondary outcomes at the 6-month follow-up. Overall, the training intervention was associated with a net saving of –£54.00 (95% confidence interval –£193.00 to £84.00), with a net quality-adjusted life-year loss of –0.014 (95% confidence interval –0.034 to 0.005). The longitudinal process evaluation recruited 54 service users, professionals and carers, finding a failure of training to become embedded in routine care.

Limitations: Our pragmatic study was designed to improve service user and care involvement in care planning among routine community mental health services. We intervened in 18 sites with > 300 care co-ordinators. However, our volunteer sites may not be fully representative of the wider population, and we lacked data with which to compare our participants with the eligible population.

Conclusions: We co-developed and co-delivered a training intervention and developed a unidimensional measure of service user and carer involvement in care planning and an audit tool. Despite a high level of satisfaction with the training, no significant effect was found; therefore, the intervention was ineffective. There was a failure of training to become embedded and normalised because of a lack of organisational readiness to accept change. Working with NHS trusts in our ‘Willing Adopters’ programme with enhanced organisational buy-in yielded some promising results.

Future work: Research should focus on developing and evaluating new organisational initiatives in addition to training health-care professionals to address contextual barriers to service and carer involvement in care planning, and explore co-designing and delivering new ways of enhancing service users’ and carers’ capabilities to engage in care planning.