People with lived and living experience (PWLLE) and family members (F) can engage in mental health and substance use health research beyond participant roles, as advisors, co-researchers, equal partners and research leads. However, implementing meaningful and effective engagement is complex.
This article profiles five research initiatives involving different lived experience engagement structures, situated in a single tertiary care teaching and research hospital.
The profiled projects feature various study designs and stages, ranging from initial priority setting to implementation efforts. The levels of engagement range from consultation to PWLLE/F leadership. Across diverse populations, all embody high-quality engagement and illustrate that PWLLE/F can have an important impact on a wide range of mental health and substance use health research.
Engagement can be implemented flexibly within a single research institution to meet a wide range of needs and preferences of researchers and PWLLE/F.
Each of the research initiatives profiled was conducted with substantial lived experience engagement, as described herein. People with lived and living experience from each research initiative are also included in the authorship team and contributed to this manuscript.
The aim of this study was to pilot test a question prompt list (QPL) about cardiovascular disease (CVD) risk reduction after hypertensive pregnancy (HDP).
In a prospective cohort study of adult women who had HDP given the QPL before and surveyed after a physician visit, we assessed perceived person-centred care, self-efficacy for self-management, perceived self-management and QPL feasibility.
Twenty-three women participated: 57% of diverse ethno-cultural groups, 65% < 40 years of age and 48% immigrants. Most scored high for person-centred care (mean 4.1 ± 0.2/5); and moderately for self-efficacy (mean 7.4 ± 0.6/10) and self-management (mean 3.1 ± 0.3/5). Most appreciated QPL design and reported QPL benefits: helped them to prepare for the visit and know what to ask; increased confidence to ask questions, knowledge of the link between HDP and CVD and lifestyle behaviours to reduce CVD risk. Most reported that physicians were receptive to discussing QPL questions.
Women appreciated the QPL and knowledge about self-management was high but self-efficacy for or perceived self-management was moderate. It appears feasible to share a QPL with ethno-culturally diverse women who can share it with physicians to facilitate discussions about post-pregnancy HDP-related CVD risk.
This study involved women who experienced HDP and engaged ethno-culturally diverse women with lived experience of HDP as study advisors in all stages of the research.
Peer supporters play a crucial role in mental health and support services, but their own mental health and emotional well-being are often neglected by themselves, and, frequently, their organisations. Here, we report findings from a qualitative interview study of peer supporters who completed a co-produced emotional well-being training programme.
Ten semi-structured interviews with peer supporters working in the North East of England were conducted to explore their experiences of the training programme.
Thematic analysis of the data produced three overarching themes. In Theme 1, ‘Increasing psychological preparedness and identifying self-care and coping strategies’, we found that peer supporters improved their knowledge of how to manage sensitive topics such as aggression and suicide and felt more confident in their peer support roles resultantly. In Theme 2, ‘It's good to know you're not alone’, peer supporters discussed their experience of loneliness in their roles, and as a consequence realised their own need for peer support to help maintain their well-being. Theme 3, ‘Toward the future: next steps’, encapsulated peer supporters' willingness to continue their role development and to create a peer support network to continue to obtain mutual support.
Our findings emphasise the perceived emotional well-being benefits of a co-produced peer supporter training programme. Participants highlighted the need for co-produced training programmes that are (1) emotion-focussed, (2) provide access to other peer supporters and (3) provide future avenues for a peer supporter network of mutual support and professional development activities and training opportunities.
Individuals with lived experience of mental ill health and peer support were consulted in the development of interview questions and provided feedback on the finalised themes to ensure the analysis and interpretations were congruent with their experiences.
Exploring health consumer preferences in care is an essential foundational, and ongoing activity, when designing and delivering models of care. We undertook a study to explore: (i) what allied health (AH) services are most important to health consumers and (ii) how health consumers expect to access these services in residential aged care (RAC) to determine consumer priorities in future AH models of care in RAC.
A mixed method study was conducted with aged care residents and community members (friends or family of residents/people who believe they may use RAC services). The study comprised two focus-group activities where participants were asked to (1) rank the AH services most important to them and then (2) categorise how they would prefer to access each AH service. Focus group members used card sort methods (Q-methodology) to aid prioritisation, categorisation and discussion. Card sorting data were analysed using inverted factor analysis and descriptive statistics. Qualitative focus group data were deductively coded using a coding structure created by the research team informed by quantitative results.
Data were collected from 16 participants who formed five focus groups in a community forum. The analysis revealed three factors, that represented shared meaning amongst groups of participants (viewpoints) regarding prioritisation of AH services: ‘Prioritising urgent needs’, ‘Prioritising long-term healthy habits and lifestyle’, and ‘Prioritising social well-being’. Data from the card sort activity, which related to ‘how health consumers expect to access AH services’, were also categorised into three categories: ‘It is always provided’, ‘A professional will assess my need’ and ‘I or my family will ask for this service if I need it’. Participants wanted most AH services to be provided regularly, with some such as ‘Exercise and rehabilitation’ and ‘Meaningful activity’ to be provided up to one hour every day.
Consumers value a range of AH services and have an expectation that these will be provided in RAC on a regular basis. To ensure consumers make informed preferences regarding the future of services in RAC, health systems need to trial innovative AH models of care and embed consumer evaluation.
We investigated whether a novel 8-week personalised health behaviour support programme, focusing on the stability of symptoms and strategies to improve activities of daily living, was feasible and acceptable in adults with post-COVID syndrome.
In this randomised, controlled, pilot feasibility trial, 32 adults with post-COVID syndrome (continued symptoms for ≥ 12 weeks) were randomised 1:1 to receive personalised health behaviour support (self-reported physical activity and symptom diaries, plus seven one-to-one remotely delivered personalised self-management support sessions), once weekly for 8-weeks, or usual care (referral to online ‘your COVID-19 recovery’ programme). The primary outcome was the feasibility of recruiting and randomising adults with post-COVID syndrome. The secondary outcomes were to assess the acceptability and safety of the intervention and various outcome measures.
Of the 48 adults who expressed interest in the study, 32 (67%) were eligible and completed the baseline assessment. All 32 adults were willing to be randomised to either the personalised health behaviour support programme (n = 17) or usual care (n = 15) and 27 (age: 45 ± 12 years) adults completed follow-up at 9 weeks. The intervention was deemed feasible, with high adherence (92% and 94% completion rates for the physical activity and symptom diaries, respectively) and excellent acceptability rates (94% ‘liked the intervention a lot’). The intervention was deemed safe, with no symptom exacerbations reported.
An 8-week personalised health behaviour support programme was feasible for adults with post-COVID syndrome, with good adherence and acceptability rates. Early pilot data from this small sample also suggests meaningful improvements in physical activity, fatigue and respiratory symptoms.
People living with post-COVID syndrome were involved from the outset with the study design, review of study documentation and interpretation of the data following completion. Furthermore, several participants have supported the local dissemination of findings following the completion of the study.
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