Admission to a mental health ward can be distressing for people living with dementia and their carers. While carer involvement is associated with improved outcomes, carers often report feeling excluded from decision-making and support during admissions. There is limited understanding of how wards engage with carers and what strategies might enhance involvement. This study seeks to address this gap by exploring carer and patient experiences during and after admission and co-producing evidence-based strategies for improved support and involvement.
The FIND ME study uses a convergent parallel mixed-methods design. A national online survey will map provision of mental healthcare for people with dementia across the UK. Narrative interviews will be undertaken with carers of current inpatients (n=24) and recently discharged individuals (n=24), with opportunities for dyadic interviews with people with dementia. Ethnographic fieldwork across three wards (30 days per site) will provide insight into organisational cultures, staff practices and carer involvement. Evidence-based co-design workshops with carers, people with dementia and staff will use these findings to identify priorities and develop practical strategies for service improvement. Finally, a feasibility study will test the acceptability, relevance and potential for implementation of these co-designed strategies. Quantitative data will be analysed descriptively, while qualitative data will undergo narrative and thematic analysis. Triangulation across datasets will ensure rigour.
Ethical approval has been granted by London Camberwell St Giles Research Ethics Committee and the Health Research Authority (REC Ref: 25/LO/0040). Informed consent will be obtained from all participants, with capacity assessed in line with the Mental Capacity Act (2005). Dissemination will include peer-reviewed publications, conference presentations and freely available multilingual resources for carers, people with dementia and ward staff, supported by NHS and third-sector partners.
NIHR161439
Approximately 53 million family caregivers (FCGs) support and provide home-based care for patients with chronic and life-limiting conditions. Caregiving at the end of life is an emotionally, cognitively and physically demanding role, and FCGs are often unpaid and receive little training. FCGs in remote, rural areas experience adverse social determinants of health (SDOHs), such as limited access to healthcare services and are often financially vulnerable, affecting their healthcare coverage, placing them at higher risk for poor emotional health. Adequate health literacy, a key SDOH, may be a protective factor. The purpose is to present the protocol of an explanatory sequential mixed-method study aiming to examine rural-dwelling FCGs’ emotional health, relationships among FCG characteristics (demographics, co-morbidities) and SDOH and health literacy as a potential mediator.
With 80% power to detect a mediation effect of at least 0.11 when the two-sided alpha is 0.05, an anticipated 108 adult rural FCGs who are providing palliative end-of-life care (PEOLC) will be recruited. Rigorous remote, digital- and community-based recruitment strategies will be employed to increase access to FCGs from under-represented rural communities. Self-report surveys include demographic and health characteristics, SDOH (health literacy, education level, employment status, annual income level, healthcare access and insurance) and anxiety/depressive symptoms. Descriptive statistics will be used to characterise the sample. Correlation analysis and one-way Analysis of variance (ANOVA) will be used to study the relationships between FCG characteristics, SDOH and anxiety/depressive symptoms. Hayes’ PROCESS Macro for IBM SPSS Statistics will be used to test mediation effects of health literacy between FCG characteristics/SDOH and anxiety/depressive symptoms. Indirect effects will be tested using bootstrapped CIs. Semistructured interviews will be conducted with a representative sample to elicit FCG perceptions relative to how SDOH affect their care provision and emotional health, then analysed using content analysis. Quantitative and qualitative strands will be examined and compared for convergence and divergence, then integrated for final interpretations.
Michigan State University’s Institutional Review Board has reviewed and approved the study. Written informed consent will be obtained from each participant. Study findings will be disseminated through publications in peer-reviewed journals and presentations at academic conferences.
Study outcomes will inform the role of SDOHs, particularly health literacy, for the development of interventions to emotionally support rural FCGs.
This nested qualitative study (NQS) aimed to identify facilitators and barriers to the delivery of a substantive randomised controlled trial investigating the eradication of gastrointestinal tract carriage of antibiotic-resistant organisms using encapsulated faecal microbiota transplant (FMT).
NQS within a participant-blinded, randomised, placebo-controlled, single-centre, feasibility trial (RCT)—Feasibility of ERadicating gastrointestinal carriage of Antibiotic-Resistant Organisms (FERARO) (ISRCTN reg. no. 34 467 677)—with data collected via focus groups and analysed using thematic analysis.
RCT participants were recruited from a large academic tertiary referral hospital in central London. Focus groups were held at the hospital or via videoconferencing for those unable to travel.
This study included 13 FERARO study participants across two focus groups. 11 participants were under RCT follow-up and unaware of their treatment allocation, two participants had completed 6-month follow-up and knew whether they had received FMT or matched placebo. Additional data were opportunistically collected on reasons for declining RCT participation.
Participants found FMT to be an acceptable and holistic management strategy and noted positive impacts from RCT participation including enhanced personal health awareness and valuable support from the research team. The time and travel commitment presented the most substantial barrier to RCT participation. Many participants were motivated by a desire to give something back to the UK National Health Service and/or research. Patients’ current health status also influenced the decision-making process, and, while infrequently cited, the COVID-19 pandemic added extra complexity likely impacting individuals’ willingness to participate.
While FMT is generally acceptable to participants, logistical barriers such as the time and travel commitment associated with RCT participation need consideration. Effective communication, personal connections and participant education on antimicrobial resistance are likely to be crucial for enhancing recruitment and retention in future trials.
ISRCTN registration number 34 467 677 and EudraCT number 2019-001618-41.
To explore the key factors influencing nurses' capability, opportunity and motivation to offer the choice for self-collection for cervical screening within rural primary care services, following a national policy change in Australia.
A qualitative study informed by implementation and behavioural change frameworks.
Primary health nurses working in Victoria were invited to participate in semi-structured interviews via video or telephone between December 2022 and March 2023. Eighteen nurses from 18 clinics participated. Interview data were analysed following a Framework analysis approach, and themes were mapped to the COM-B model.
Nurses were highly motivated to offer the choice for self-collection due to perceived advantages for their patients and potential opportunities for reaching people hesitant to screen. There was variation in how nurses offered this choice, and to whom. Some nurses were concerned about lost opportunities to visualise the vulval area or cervix, or to have broader health and wellbeing conversations with patients. Views were mixed about how self-collection would impact nurse roles, and several external factors were impacting their opportunities as cervical screening providers.
Appropriately trained nurses have the capability and motivation to incorporate the choice for self-collection within their screening practice; however, their opportunity to maximise equity and increase participation is impacted by funding models and structures that limit their autonomy.
People living outside major cities experience greater healthcare inequities. Australia introduced access to the choice for self-collection for all eligible individuals in 2022, in part to achieve greater equity in the national screening program. Nurses can play a key role in program delivery. Understanding how they incorporate self-collection into their practice, and the key factors influencing implementation in rural primary care settings, can inform future program implementation and improve outcomes for patients.
We have adhered to COREQ reporting guidelines.
This study did not include patient or public involvement in its design, conduct or reporting.