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Factors Influencing Consumer Engagement in Hospital Care: An Interview Study of Perceptions and Experiences of Patients, Carers and Care Providers

ABSTRACT

Aim(s)

To explore the challenges and facilitators to consumer engagement in care during hospital attendance, integrating the perspectives of patients, informal carers and care providers.

Design

A qualitative descriptive study using semi-structured interviews.

Methods

A total of 102 individual interviews were conducted with patients (n = 43), informal carers (n = 31) and hospital care providers (n = 28) recruited from across Australia using purposive, convenience and snowball sampling. Data were collected between March 2023 and January 2024. Interviews were audio-recorded, transcribed and analysed using thematic analysis.

Results

Eight themes illustrating factors that facilitated or hindered consumer engagement were nested within three overarching domains: relational conditions for engagement; consumer capacity and support; and organisational, system, and safety conditions. Patients, carers and care providers identified many overlapping barriers and facilitators, but differed in how they experienced and emphasised them.

Conclusion

Consumer engagement in hospital care is shaped by individual, interpersonal, organisational, cultural, systemic and ethical factors. Improving engagement therefore requires care environments that actively legitimise patient and carer engagement while providing staff with the time, resources and policy clarity needed to support safe and meaningful participation.

Implications for the Profession and/or Patient Care

Healthcare organisations could strengthen consumer engagement by improving staff communication practices and cultural sensitivity, supporting patient and carer health literacy, creating structured opportunities for engagement, clarifying confidentiality and safety boundaries, and considering locally feasible support roles or technologies. Such strategies require adaptation to workforce and resource constraints and should be evaluated in future research.

Impact

What problem did the study address? ○

Consumer engagement is central to high-quality, patient-centred care, yet the factors that shape it remain incompletely understood, with prior research typically focusing on single perspectives or discrete episodes of hospital care.

What were the main findings? ○

Eight themes were nested within three overarching domains: relational conditions for engagement; consumer capacity and support; and organisational, system, and safety conditions. Although themes were broadly consistent across patients, carers, and care providers, the groups differed in how they experienced and emphasised these factors.

Where and on whom will the research have an impact? ○

The findings will inform care providers, healthcare organisations, and policymakers in developing strategies to improve consumer engagement across hospital settings, with relevance to international contexts where patient-centred care is a priority.

Reporting Method

This study adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines.

Patient or Public Contribution

Patients and members of the public were involved in the study design, participant recruitment, and interpretation and dissemination of findings. A Patient and Carer Advisory Board provided input from inception to dissemination, ensuring the research addressed patient-relevant priorities.

Registration

Not registered.

Arts as a resource in global mental health: a mixed-methods exploratory study of therapeutic arts, photography and cultural archiving with formerly captured Yazidi women

Por: Sajnani · N. · Laegreid · E. · Stapleton · S. · Bailey · C. · Daridan · C. · Fatani · A. · Paris · Z. · Richards · G.
Objectives

The 2014 genocide perpetrated by Islamic State in Iraq and Syria (ISIS) against the Yazidi community resulted in widespread psychological trauma, mass displacement and targeted destruction of cultural heritage. This exploratory study examined a therapeutic arts and photography intervention with formerly captured Yazidi women, alongside the participatory development of a cultural archive, as an integrated approach to supporting mental health, cultural resilience and survivor authorship in a postconflict setting.

Design

Mixed-methods exploratory study using a pre–post quantitative design integrated with qualitative semistructured interviews and participatory focus groups.

Setting

Humanitarian, camp-based and community settings in northern Iraq within a Yazidi-led psychosocial support programme in a postconflict context.

Participants

Twelve formerly captured Yazidi women initially enrolled, with 10 completing the intervention and quantitative assessments; all were adult women who had survived captivity by ISIS and were engaged with local psychosocial services.

Primary outcome measures

Primary quantitative outcomes were psychological distress, flourishing and coping, assessed using a modified Refugee Health Screener (RHS-15); qualitative outcomes focused on participants’ experiences of wellbeing, coping and meaning-making through arts engagement and cultural archiving.

Results

Quantitative analyses indicated statistically significant reductions in psychological distress (p=0.015) and increases in flourishing (p=0.046); corresponding effect sizes suggested large but imprecise changes consistent with the small sample and exploratory nature of the study. Qualitative analyses identified outcomes related to enhanced social–emotional well-being, occupational justice and renewed future orientation, alongside therapeutic mechanisms including emotional expression, social connection, skill development, positive distraction and artistic medium-specific processes. The participatory archive development process yielded four primary functions: cultural and religious preservation, community well-being and resilience, education and understanding and participant-defined purpose and preferred forms of artistic expression. Mixed-methods integration demonstrated convergence between improvements in well-being and qualitative accounts of agency, identity reconstruction and cultural continuity.

Conclusions

This study provides preliminary evidence that therapeutic arts and photography, integrated with participant-led cultural archiving, may support reductions in distress and increases in flourishing among formerly captured Yazidi women. Positioning cultural archiving as a psychosocial and community-based practice highlights its potential to support collective resilience, survivor authorship and occupational justice alongside individual healing. Further research is needed to examine long-term outcomes, scalability and comparative effectiveness across contexts and to develop accessible, culturally grounded models for integrating such interventions into clinical and community services.

COVID-19 vaccination among people affected by sexually transmitted and bloodborne infections, methamphetamine use and their intersection in Manitoba, Canada: a retrospective matched cohort analysis using population-based administrative healthcare data (20

Por: Shaw · S. Y. · Mahar · A. · Bailey · K. · Payne · M. · Kindrachuk · J. · Kelly · C. · Friesen · K. J. · Bernstein · C. N. · Reimer · J. N. · Becker · M. L. · McClarty · L. M. · Stein · D. · Nickel · N. C.
Objectives

To examine COVID-19 vaccine uptake among people diagnosed with sexually transmitted and bloodborne infections (STBBIs), people with healthcare-documented methamphetamine use and those experiencing both exposures in Manitoba, Canada.

Design

Population-based retrospective matched cohort study using linked administrative healthcare, laboratory and vaccination data.

Setting

Manitoba, Canada, from 1 March 2020 to 31 March 2022.

Participants

Manitoba residents aged ≥16 years with laboratory-confirmed chlamydia or gonorrhoea, syphilis or HIV and/or healthcare-documented methamphetamine use during the 4 years before 1 March 2020 were classified into eight mutually exclusive exposure cohorts. Individuals were matched with comparators without the corresponding exposure based on age, sex, geographical region and area-level income quintile.

Primary outcome measure

Receipt of ≥2 COVID-19 vaccine doses. Poisson regression models incorporating person-time were used to estimate adjusted rate ratios (aRRs) and 95% CIs.

Results

Compared with matched comparators, vaccine uptake was lower in the Syphilis Only (aRR 0.83, 95% CI 0.80 to 0.86), Syphilis Plus (aRR 0.77, 95% CI 0.74 to 0.79), Chlamydia/Gonorrhoea Only (aRR 0.91, 95% CI 0.90 to 0.92), Chlamydia/Gonorrhoea Plus (aRR 0.74, 95% CI 0.72 to 0.77), Methamphetamine Only (aRR 0.71, 95% CI 0.68 to 0.73) and Methamphetamine plus STBBI cohorts (aRR 0.64, 95% CI 0.62 to 0.67). Uptake in the HIV Only cohort was similar to that among matched comparators (aRR 0.97, 95% CI 0.93 to 1.00). Lower uptake was concentrated among individuals living in lower-income areas.

Conclusions

COVID-19 vaccine uptake was lower among several populations affected by STBBIs, methamphetamine use or both, with the greatest disparity among people experiencing intersecting STBBI and methamphetamine-related exposures. Integrating vaccination with HIV, STBBI, harm-reduction and addiction services may improve vaccine equity during future public health emergencies.

Clinical and cost-effectiveness of the iStep-MS physical activity and sedentary behaviour intervention for managing fatigue in people with multiple sclerosis: protocol for a multicentre randomised controlled trial

Por: Bailey · D. P. · Norris · E. · LeWarne · M. D. · Cerexhe · L. · Anokye · N. · Banstola · A. · Gwatsvaira · J. · Norris · M. · Ryan · J. · Stuart · B. · Thomson · A. · Kilbride · C.
Introduction

Regular physical activity and limiting sedentary behaviour are important aspects in managing multiple sclerosis (MS). Fatigue is a common and disabling symptom in MS, contributing to impairments in activities of daily living and poorer quality of life. This study aims to determine the effectiveness of a physical activity and sedentary behaviour intervention, called iStep-MS, for reducing fatigue in people with MS when delivered across the MS care pathway.

Methods and analysis

This is a multicentre, two-arm randomised controlled superiority trial with embedded economic and process evaluations. The study will take place across South-East England in acute and community National Health Service settings and charity-funded MS and neurological therapy centres. Intervention deliverers will include a range of healthcare staff such as physiotherapists, occupational therapists, therapy assistants, nurses and exercise therapists. A target sample size of n=198 participants will be randomised 1:1 to the intervention (iStep-MS behaviour change intervention plus usual care) or control (usual care only) arms. Participants will be adults with any type of MS, experiencing MS-related fatigue, relapse-free for >3 months, with a Self-Reported Disability Status Scale category of ≤3.5 (no disability to moderate disability) or 4–6.5 (significant disability). The iStep-MS intervention includes four one-to-one consultation sessions in-person or online with an intervention deliverer over 3 months, incorporating behaviour change techniques aimed at increasing physical activity and reducing sedentary behaviour. The consultations are supported by a handbook designed to help individuals with MS set goals and achieve behavioural changes and a wearable activity tracker for self-monitoring. Outcomes (assessed at baseline, 3 months and 9 months) include self-reported fatigue, quality of life, MS-impact, walking capability, pain, self-efficacy and waist circumference. Sitting, standing and stepping will be measured over 8 days using the activPAL4 device. A process evaluation will assess intervention acceptability, adherence and fidelity, including questionnaires and focus groups with participants and deliverers. A cost-effectiveness analysis will evaluate the value for money of the intervention against usual care.

Ethics and dissemination

Ethical approval has been granted by the NHS London—Bloomsbury Research Ethics Committee (reference 25/LO/0272). Results will be disseminated in scientific journals, conferences and to the wider public (eg, newsletters and social media).

Trial registration number

ISRCTN16944301.

Intellectual and physical disability, household living arrangements and COVID-19 outcomes in Scotland: protocol for a retrospective cohort study

Por: Adebisi · Y. A. · Bailey · N. · Henderson · A. · Dibben · C. · Pattaro · S.
Introduction

While evidence consistently demonstrates elevated COVID-19 risks among people with intellectual and physical disabilities, less is known about how household living arrangements shape these inequalities. Residential setting and household size influence exposure, capacity to isolate and reliance on care yet have rarely been examined jointly with disability status at a population scale. This study aims to estimate disability-related inequalities in COVID-19 infection, hospitalisation and mortality in Scotland and to assess whether residential setting and household size modify these inequalities using linked, population-wide administrative data.

Methods and analysis

This population-wide retrospective cohort study will use linked administrative data in Scotland. The study will focus on individuals present in the 2011 Scottish Census with records linkable to the Scottish population spine, which encompasses all individuals registered with a general practice who received a Community Health Index number. The cohort will comprise those who were alive, resident in Scotland and aged 16 years or older on 1 March 2020. Disability status will be classified from Census records as intellectual disability, physical disability (without intellectual disability) or a comparison group without reported disability. Address information recorded by the general practice will be linked to Ordnance Survey AddressBase Premium to assign Unique Property Reference Numbers. Residential settings will be classified from Basic Land and Property Unit codes as private dwellings or communal establishments and household size will be derived from resident counts at each property. Following linkage to the Public Health Scotland COVID-19 Research Database, outcomes including infection, hospitalisation and mortality will be ascertained from 1 March 2020 to 30 April 2022. Cox proportional hazards models will estimate associations between disability status, household living arrangements and COVID-19 outcomes, adjusting for relevant covariates. Effect modification will be assessed by evaluating interactions between disability status and household living arrangements on both multiplicative and additive scales.

Ethics and dissemination

Ethical approval was granted by the College of Social Sciences Research Ethics Committee, University of Glasgow (reference: 400200099). Data linkage was approved by the Scottish Public Benefit and Privacy Panel for Health and Social Care and the Scottish Government & National Records of Scotland Data Access Panel (reference: 2021-0119). Findings will be disseminated through peer-reviewed open-access publications and conference presentations.

Responsible preoperative opioid use for hip or knee arthroplasty (OpioidHALT): a protocol for a randomised clinical trial of pharmacist-partnered opioid tapering prior to hip or knee arthroplasty

Por: Penm · J. · Liu · S. · Adie · S. · Ashton-James · C. E. · Bailey · K. A. · Brady · B. · Chaar · B. · Chen · J. · Descallar · J. · Englezos · K. · Genel · F. · Gillespie · D. · Gnjidic · D. · Hoang · T. · Jansson · A. · Jauregui · K. J. · Keehan · M. · Lin · C.-W. C. · Lintzeris · N. · Luckie
Introduction

Despite limited evidence of efficacy, opioid analgesics are frequently used by patients for chronic pain while awaiting total hip or knee arthroplasty (THA or TKA). Preoperative use of opioids is problematic as it increases the likelihood of postoperative opioid-related adverse drug events and postoperative complications and is the strongest predictor of persistent opioid use post surgery. Opioid tapering prior to elective surgery has been proposed as a strategy for mitigating harms and improving postoperative outcomes. This protocol describes a randomised clinical trial, which aims to determine the effectiveness of a preoperative pharmacist-partnered opioid tapering programme compared with standard care for patients awaiting elective THA or TKA on postoperative outcomes including persistent opioid use.

Method and analysis

Eligible participants must be aged ≥18 years; awaiting elective unilateral or bilateral THA or TKA; speak and read English; use prescription opioid analgesics at least 4 days a week and have access to internet or telephone. The participants will be excluded if they are undergoing a repeat surgery (same procedure within 6 months), are using opioids for cancer, palliative care or substance use disorder; have previously or are currently undergoing an opioid tapering programme or active medication review or have cognitive impairment. Enrolled participants will be randomised in a 1:1 ratio in permuted blocks of two and four to: (1) intervention or (2) standard care. A total of 314 participants will be recruited into the study. The intervention will include a pharmacist-partnered opioid tapering programme in which a pharmacist will work with participants to reduce their opioid dose over a 3-month period before surgery. Standard care will involve review by the hospital preadmission clinic multidisciplinary team to assess medical, physical and psychological health prior to surgery and education sessions for preoperative and postoperative care. The primary outcome assessed is persistent opioid use 3 months post surgery. The key secondary outcome is total Western Ontario and McMaster Universities Arthritis Index score. Data analysis will be performed using an estimand framework, with a generalised estimating equation model for the primary outcome from 1 day to 3 days presurgery to 3 months post surgery and a multilevel model for the main secondary outcome from baseline to 3 months after surgery. Cost-effectiveness and cost-utility analyses will be conducted to determine whether the intervention is cost-effective from the healthcare system perspective.

Ethics and dissemination

Ethics approval for this study was granted by a Human Research Ethics Committee (approval number: 2023/ETH01042). Results will be disseminated in peer reviewed journals, at international scientific meetings as well as meetings with key stakeholders and via the media.

Trial registration number

ACTRN12623000685617.

Using FRAME Documentation to Achieve RE‐AIM Goals During Iterative, Stakeholder‐Engaged Refinement of a Family Management Intervention for Parents of Preterm Infants

ABSTRACT

Aims

To co-identify adaptations with key stakeholders needed to optimise elements of a video-based intervention (i.e., PREEMIE PROGRESS [PP]), which trains parents in evidence-based family management skills to care for their very preterm infant in the neonatal intensive care unit (NICU).

Design

Descriptive qualitative study oriented with a pragmatic philosophy, informed by the reach, effectiveness, adoption, implementation, maintenance (RE-AIM) framework and the framework for reporting adaptations and modifications-expanded (FRAME).

Methods

Semistructured interviews to identify potential adaptations with key stakeholders: family management researchers (n = 5), clinicians (n = 9), technology experts (n = 5) and parents of preterm infants (n = 17). Weekly design team meetings to select and implement high-priority adaptations necessary for the next research phase. Monthly NICU parent partnership meetings to review adaptations and make recommendations for potential adaptations with conflicting data.

Results

Stakeholders (N = 36) suggested 98 potential adaptations: 32 (33.0%) were completed, 8 (8.2%) were abandoned, 5 (5.2%) have work that is ongoing and 52 (53.6%) were tabled for future research phases. Content adaptations (70, 71.4%) were the most frequently suggested adaptation type. Potential adaptations mostly addressed RE-AIM dimensions of effectiveness (43, 43.9%), and implementation (46, 46.9%) and were directed at the parent (i.e., intervention recipient) level (79, 81.4%).

Conclusion

Use of the RE-AIM framework ensured we systematically identified needed adaptations with key stakeholders across a range of dimensions that would improve PP for parents now and in future phases of this research.

Implications for the Profession

Co-identifying potential adaptations with key stakeholders, paired with FRAME documentation, can help nurses prioritise adaptations most appropriate for each phase of implementation.

Impact

Our paper highlights for nurse clinicians and researchers how FRAME documentation of potential adaptations can support stakeholder engagement and a systematic approach to incorporating adaptations throughout all phases of the research process, thereby shortening the evidence to practice gap.

Reporting Method

COREQ guidelines for qualitative reporting.

Patient/Public Contribution

The research team was supported by members of the NICU's Parent Partnership Council (PPC), whose mission is to promote family-centred care improvement projects and research within the NICU. This committee is comprised of nursing, physician, allied health leadership and parents of infants previously hospitalised in the NICU. The NICU PPC met monthly to review conflicting data on potential adaptations and provide recommendations on adaptation decisions.

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