A co-produced service evaluation of ethnic minority community service user experiences of a specialist mental health service during the COVID-19 pandemic.

BACKGROUND: For ethnic minority communities in the UK, the COVID-19 pandemic amplified existing health inequalities and created other consequential disadvantages like increased vulnerability to COVID-19, higher rates of hospital admissions, increased mortality and poorer mental health outcomes. While longer-term impacts of COVID-19 are considered, it is crucial for NHS mental health services to understand the specific barriers and needs of ethnic minority communities to provide consistent and equitable access to mental health services. These aspects were the focus of a service evaluation of a Sussex-wide mental health service conducted in co-production with experts-by-experience, public members, health professionals and researchers from ethnic minority communities. METHODS: Co-designed creative workshops (n = 13) and semi-structured qualitative interviews (n = 13) were used to explore experiences of accessing specialist mental health services during the COVID-19 pandemic. Participants were: Sussex Partnership NHS Foundation Trust (SPFT) service users recruited between October 2021 and January 2022; aged 16+; from ethnic minority community backgrounds. Data was analysed using Thematic Analysis. RESULTS: The analysis yielded five overarching themes contextualising service users' experiences: (1) limited awareness of SPFT mental health services; (2) effects of COVID-19 in gaining access to SPFT; (3) SPFT reaching out to ethnic minorities; (4) being supported, 4a) hiding my mental health status from friends and families, 4b) lack of ethnic diversity in services, and 4c) better provision of information and support services, (5) relationship between childhood experiences and current mental health. These findings led to seven key recommendations for future service developments within SPFT. CONCLUSIONS: Although this evaluation was set in the context of COVID-19, findings have highlighted specific mental health service needs for ethnic minorities that are applicable beyond the confines of the pandemic. Many benefited from online sessions seen as more inclusive. Mental health advocates, outreach and joint working with communities could help further reduce stigmatising attitudes and improve engagement with mental health services. Improved service awareness of the impact of childhood or historical traumas experienced by ethnic minority communities on current mental health, the role of cultural awareness training and availability of culturally adapted therapies is also needed. Many service improvement recommendations provided could impact all service users.

Caring for Carers (C4C): Results from a feasibility randomised controlled trial of positive written disclosure for older adult carers of people with psychosis.

BACKGROUND: Older adult carers of people who experience psychosis are at increased risk of developing physical and mental health problems due to the compounding factors of supporting their care-recipient and the health changes associated with ageing. Effective interventions exist but can be difficult to access and maintain prolonged engagement. Self-directed writing therapies, frequently referred to as Written Emotional Disclosure (WED), might be a suitable alternative intervention to improve the wellbeing of carers. METHODS: This study aimed to determine the feasibility (recruitment, retention and primary outcome completion) and acceptability of a specific WED intervention known as Positive Written Disclosure (PWD). Informal carers of people with psychosis were randomised to PWD, neutral writing or no writing. Quantitative outcomes including positive and negative affect, carer wellbeing, quality of life, depression, anxiety, stress, self-efficacy, leisure time satisfaction as well as health care utilisation were collected at baseline, 1-, 3-, and 6-month assessments. Qualitative feedback was also collected via questionnaire and semi-structured interviews from those randomised to either writing group. RESULTS: We successfully met our progression criteria, recruiting to target and within timeframes whilst attaining 97% retention and 84% primary outcome data completed at 6 months. Carers randomised to the positive writing group described the intervention as enabling them to have a more positive attitude and focus on activities for themselves. Both writing groups described their tasks as providing distraction from caring responsibilities. However, some carers found the narrow positive emotion focus challenging. CONCLUSIONS: PWD is a feasible and acceptable intervention for older adult carers of people with psychosis within a community setting. Further refinement of the writing protocol to include choice in type of emotion disclosed in addition to screening for some level of need may be required in future trials to reduce floor/ceiling effects of outcomes which may explain the lack of change observed.

Palliative Long-Term Abdominal Drains Versus Large Volume Paracentesis in Refractory Ascites Due to Cirrhosis (REDUCe Study): Qualitative Outcomes.

CONTEXT: Palliative care remains suboptimal in end-stage liver disease (ESLD). OBJECTIVES: We report qualitative outcomes from the REDUCe study. We aimed to explore and contrast experiences/perceptions/care pathways of patients with refractory ascites due to ESLD randomized to either palliative long-term abdominal drains (LTADs) (allow home drainage) vs. large volume paracentesis (LVP) (hospital drainage). METHODS: Concurrent embedded qualitative study in a 12-week feasibility randomized controlled trial. Telephone interviews were conducted, data being recorded, transcribed verbatim, and analyzed using applied thematic analysis, considered in terms of a pathway approach toward accessing health care. Quantitative outcomes were collected (integrated palliative outcome scale, short-form liver disease quality of life, EQ-5D-5 L, Zarit Burden Interview-12). RESULTS: Fourteen patients (six allocated LTAD and eight LVP) and eight nurses participated in the qualitative study. The patient journey in the LVP group could be hindered by challenges along the entire care pathway, from recognizing the need for drainage to a lengthy wait in hospital for drainage and/or to be discharged. These issues also impacted upon caregivers. In contrast, LTADs appeared to transform this care pathway at all levels across the patient's journey by removing the need for hospital drainage. Additional benefits included personalized care, improved symptom control of ascites, being at home, and regular support from community nurses. Nurses also viewed the LTAD favorably, though expressed the need for additional support should this become standard of care. CONCLUSION: Patients and nurses expressed acceptability of palliative LTAD in ESLD and preference for this approach in enabling care at home. Proceeding to a definitive trial is feasible. TRIAL REGISTRATION: ISRCTN30697116, date assigned: 07/10/2015.

Demographic predictors of wellbeing in Carers of people with psychosis: secondary analysis of trial data.

BACKGROUND: Carers of people with psychosis are at a greater risk of physical and mental health problems compared to the general population. Yet, not all carers will experience a decline in health. This predicament has provided the rationale for research studies exploring what factors predict poor wellbeing in carers of people with psychosis. Our study builds on previous research by testing the predictive value of demographic variables on carer wellbeing within a single regression model. METHODS: To achieve this aim, we conducted secondary analysis on two trial data sets that were merged and recoded for the purposes of this study. RESULTS: Contrary to our hypotheses, only carer gender and age predicted carer wellbeing; with lower levels of carer wellbeing being associated with being female or younger (aged under 50). However, the final regression model explained only 11% of the total variance. CONCLUSIONS: Suggestions for future research are discussed in light of the limitations inherent in secondary analysis studies. Further research is needed where sample sizes are sufficient to explore the interactive and additive impact of other predictor variables.

Barriers to recruiting and retaining psychosis carers: a case study on the lessons learned from the Caring for Caregivers (C4C) trial.

OBJECTIVE: Carers play an important role within the UK mental health system. Those carers who support persons with psychosis can experience a reduction in their own physical and mental health. As part of the Caring for Caregivers (C4C) trial, we piloted a writing intervention (Positive Written Disclosure) that has been shown to improve wellbeing in other populations. Although we reached our recruitment target, we encountered several barriers that made recruitment slower than anticipated. This paper synthesises the process data collected during the C4C trial that relates to the barriers to recruiting and retaining psychosis carers. RESULTS: We encountered four main carer-specific barriers to the recruitment and retention of participants in our study. These were: (1) poor relationship with mental health clinicians, (2) conflicting with the care recipient's (CR) needs, (3) lack of spare time, and (4) lack of services for mental health carers. The interventions to assist carers need to be informed by robust evidence and this requires trials that reach their recruitment targets. By sharing our practical experiences other researchers and clinicians can modify their practices to minimise recruitment difficulties and delay. Trial registration ISRCTN79116352. Retrospectively registered (before the final participant was recruited) on 23rd January 2017.