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"Sweetman, Jennifer"
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Accessing care for Long Covid from the perspectives of patients and healthcare practitioners: A qualitative study
by
Sweetman, Jennifer
,
Turk, Fidan
,
Chew‐Graham, Carolyn A.
in
access to care
,
Barriers
,
Candidates
2024
Background Long Covid is an emerging long‐term condition, with those affected raising concerns about lack of healthcare support. Objective We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary. Setting and Participants In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long‐COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE‐ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care. Results Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient–HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient‐centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned. Discussion The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care. Conclusions This study highlights that despite these interviews being conducted two years after the start of the COVID‐19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid. Patient or Public Contribution People with Long Covid advised on all stages of this research.
Journal Article
Integrated care policy recommendations for complex multisystem long term conditions and long COVID
2024
The importance of integrated care for complex, multiple long term conditions was acknowledged before the COVID pandemic but remained a challenge. The pandemic and consequent development of Long COVID required rapid adaptation of health services to address the population’s needs, requiring service redesigns including integrated care. This Delphi consensus study was conducted in the UK and found similar integrated care priorities for Long COVID and complex, multiple long term conditions, provided by 480 patients and health care providers, with an 80% consensus rate. The resultant recommendations were based on more than 1400 responses from survey participants and were supported by patients, health care professionals, and by patient charities. Participants identified the need to allocate resources to: support integrated care, provide access to care and treatments that work, provide diagnostic procedures that support the personalization of treatment in an integrated care environment, and enable structural consultation between primary and specialist care settings including physical and mental health care. Based on the findings we propose a model for delivering integrated care by a multidisciplinary team to people with complex multisystem conditions. These recommendations can inform improvements to integrated care for complex, multiple long term conditions and Long COVID at international level.
Journal Article
Modifying and validating the social responsiveness scale edition 2 for use with deaf children and young people
2020
A Delphi consensus methodology was used to adapt a screening tool, the Social Responsiveness Scale– 2 (SRS-2), for use with deaf children including those whose preferred communication method is sign language. Using this approach; 27 international experts (The Delphi International Expert Panel), on the topic of autism spectrum disorder (ASD) in deaf people, contributed to the review of item content. A criterion for agreement was set at 80% of experts on each item (with 75% acceptable in the final fourth round). The agreed modifications are discussed. The modified SRS-2 research adaptation for deaf people (referred to here as the “SRS-2 Deaf adaptation”) was then translated into British Sign Language using a robust translation methodology and validated in England in a sample of 198 deaf children, 76 with Autism Spectrum Disorders (ASD) and 122 without ASD. The SRS-2 Deaf adaptation was compared blind to a NICE (National Institute for Health and Care Excellence) guideline standard clinical assessment. The area under the Receiver Operating (ROC) curve was 0.811 (95% CI: 0.753, 0.869), with an optimal cut-off value of 73, which gave a sensitivity of 82% and a specificity of 67%. The Cronbach Alpha coefficient was 0.968 suggesting high internal consistency. The Intraclass Correlation Coefficient was 0.897, supporting test-retest reliability. This performance is equivalent to similar instruments used for screening ASD in the hearing population.
Journal Article
Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership
by
van der Feltz-Cornelis, Christina Maria
,
Sampford, James
,
Elfeddali, Iman
in
Adult cardiology
,
Adult neurology
,
Adult psychiatry
2022
ObjectivesThis study establishes research priorities for medically not yet explained symptoms (MNYES), also known as persistent physical symptoms or medically unexplained symptoms, from the perspective of patients, caregivers and clinicians, in a priority setting partnership (PSP) following the James Lind Alliance (JLA) approach. Research into such symptoms in general has been poorly funded over the years and so far has been primarily researcher-led with minimal input from patients, caregivers and clinicians; and sometimes has been controversial.DesignJLA PSP method. The PSP termed these symptoms MNYES.MethodsThe study was conducted according to the JLA’s detailed methodology for conducting priority setting exercises. It involved five key stages: defining the appropriate term for the conditions under study by the PSP Steering Group; gathering questions on MNYES from patients, caregivers and clinicians in a publicly accessible survey; checking these research questions against existing evidence; interim prioritisation in a second survey; and a final multi-stakeholder consensus meeting to determine the top 10 unanswered research questions using the modified nominal group methodology.ResultsOver 700 responses from UK patients, caregivers and clinicians were identified in the two surveys and charities contributed from a broad range of medical specialties and primary care. The final top 10 unanswered research questions cover, among others: treatment strategies, personalisation of treatment, collaborative care pathways, training for clinicians and outcomes that matter to patients.InterpretationThe top 10 unanswered research questions are expected to generate much needed, relevant and impactful research into MNYES.
Journal Article
Work stress and its association with suicidal ideation, health and presenteeism during the COVID-19 pandemic: cross-sectional study in the UK health and university workforce
by
Sweetman, Jennifer
,
Merecz-Kot, Dorota
,
de Miquel, Carlota
in
COVID-19
,
Cross-sectional studies
,
Employees
2025
Work stress levels rose among health and educational workforces during the COVID-19 pandemic, and can affect employee well-being and organisational efficiency.
To explore the association of work stress with mental health, including suicidal ideation and physical health, as well as presenteeism, as aspects of organisational efficiency in UK healthcare and university workers.
A total of 328 UK participants completed self-report questionnaires between April 2022 and September 2023 in the context of the European Platform to Promote Wellbeing and Health in the Workplace (EMPOWER) study. Cross-sectional analyses were conducted.
Two hundred and ninety-two (90%) employees reported work-related stress (Mini-Psychosocial Stressors at Work Scale). Depressive, anxiety and somatic symptoms were reported (61, 55 and 75%, respectively); 11% of the participants reported suicidal ideation (Patient Health Questionnaire 9) and 56% reported presenteeism (iMTA Productivity Cost Questionnaire). Psychological and somatic symptoms were worse when suicidal ideation or presenteeism was reported. Stressful work factors included having too much work to do (63%), a bad working atmosphere (28%), poor work-home balance (32%) and working hours hindering private life (35%). Spearman correlations showed significant associations between work stress and suicidal ideation (0.225), depressive (0.290), anxiety (0.299) and somatic symptoms (0.245) and presenteeism (0.311), but not with having a chronic medical condition.
Given the association between work stress, suicidal ideation and presenteeism, research should explore how psychosocial risk factors linked to work stress could be reduced for healthcare and higher education employees. The findings warrant the development of policies to address work stress, and to provide employee support for suicidal ideation and presenteeism in the work setting.
Journal Article
Engaging adults with severe mental illness in research: considerations and practical recommendations for meaningful patient and public involvement
2026
Background
Patient and public involvement (PPI) in mental health research is essential but presents unique challenges, particularly when engaging adults with severe mental illness (SMI). This report focusses on the process, benefits, and challenges of involving adults with lived experience of SMI as active partners within a five-year research programme aimed at co-producing a new evidence- and theory-based intervention to support smoking behaviour change following mental health inpatient care. It summarises our PPI strategy, the lived experience insight provided, and practical recommendations for facilitating meaningful involvement of people with SMI throughout the research process.
Methods
We reflect on our approach to PPI within the research programme. Involvement spanned the entire research programme, from intervention design to dissemination. The research team reflected on the PPI participants’ experience via informal feedback, meeting notes, and reflective team discussions. These reflections informed the identification of practical considerations and recommendations.
Results
PPI was crucial to the research and had a powerful, meaningful impact, with group members playing a key role in shaping participant-facing materials and intervention resources. Success was supported by early planning, dedicated facilitation, sustained relationship-building, and clear communication. Challenges included balancing meaningful input with accessibility, accommodating individual needs and preferences, and supporting varying levels of engagement due to participants’ ongoing mental health experience.
Conclusion
Involving adults with SMI in research is both feasible and valuable, and requires careful planning, flexibility, and support. This report highlights the importance of relational approaches and tailored support to enable meaningful contributions, offering practical guidance for researchers developing inclusive PPI strategies in mental health trials involving complex populations.
Plain English summary
Background
People with severe mental illness (SMI) often face particular challenges, especially when it comes to being involved in research. However, their input is very important, especially for research that aims to support their health and wellbeing. This report describes how we involved people with lived experience of SMI in a five-year research programme. The goal of the research was to support people to stop smoking after leaving a mental health hospital.
Methods
We involved people with lived experience of SMI (including one carer), at every stage of the research, from designing the intervention to sharing the results. The research team looked back on their experience, reviewed meeting notes, and had group discussions to reflect on what went well and what could be improved. These reflections helped the team to come up with recommendations for involving people with lived experience in future research.
Results
It was important to build strong relationships, communicate clearly, and provide support throughout. It was important to ensure activities were accessible and flexible, especially as people’s ability to participate could change depending on their mental health. It was also important to adapt research activities to individual preferences and needs.
Conclusion
Involving people with lived experience of SMI in research was both possible and valuable. Their voices helped make the research more relevant. Our experience shows that with the right support, people with lived experience can make important contributions to complex mental health studies. This short report offers recommendations to help other researchers plan meaningful and inclusive involvement in similar projects.
Journal Article
Integrating the smoke-free app into a multicomponent intervention for people with mental health conditions who smoke: a short report of a service-improvement project
by
Ross, Louise
,
Shoesmith, Emily
,
Ratschen, Elena
in
Advisors
,
Community Health
,
Confidentiality
2025
BackgroundEvidence on designing and testing digital interventions for patients with mental health conditions is emerging. However, little is known about supporting patient needs and mitigating risks when offering smoking cessation apps in this population. We aimed to identify patient support needs and factors influencing patient safety when interacting with the Smoke Free app.MethodsWorkshops and interviews were conducted with members of a patient and public involvement (PPI) panel and mental health professionals (MHPs). Feedback from PPI members was summarised, and MHP interviews were thematically analysed.ResultsFive PPI members and six MHPs participated. PPI members identified support needs for app use, including tailored demonstrations and reassurance about data confidentiality. MHPs identified safety concerns, including potential misuse of the in-app advisors, risky social interactions when using in-app peer support groups and exacerbation of mental health symptoms related to sharing personal information.ConclusionAn onboarding session, resources and procedures to support the mitigation of key risks were developed to support patients discharged from acute mental health settings when interacting with the Smoke Free app. The next stage is to deliver the multi-component intervention in a randomised controlled feasibility study, including a process evaluation to assess app uptake and engagement.
Journal Article
Adapting and validating the Autism Diagnostic Observation Schedule Version 2 for use with deaf children and young people
by
Hughes, Anna
,
Allgar Victoria
,
Le Couteur Ann
in
Autism
,
Autism Spectrum Disorders
,
Autistic children
2022
We report a Delphi Consensus modification and first validation study of the Autism Diagnostic Observation Schedule – 2 with deaf children and young people (ADOS-2 Deaf adaptation). Validation included 122 deaf participants (aged 2–18 years), 63 with an Autism Spectrum Disorder (ASD). This was compared to a National Institute for Health and Clinical Excellence (NICE) guideline standard clinical assessment by blinded independent specialist clinicians. Results showed overall sensitivity 73% (95%CI 60%, 83%); specificity 71% (95%CI 58%, 82%), and for the more common modules 1–3 (combined as in previous studies) sensitivity 79% (95% CI 65–89%); specificity 79% (95% CI 66–89%) suggesting this instrument will be a helpful addition for use with deaf children and young people.
Journal Article
STIMULATE-ICP-Delphi
by
van der Feltz-Cornelis, Christina M
,
Green, Angela
,
Wall, Emma
in
Care and treatment
,
Comorbid patients
,
Integrated delivery networks
2022
As mortality rates from COVID-19 disease fall, the high prevalence of long-term sequelae (Long COVID) is becoming increasingly widespread, challenging healthcare systems globally. Traditional pathways of care for Long Term Conditions (LTCs) have tended to be managed by disease-specific specialties, an approach that has been ineffective in delivering care for patients with multi-morbidity. The multi-system nature of Long COVID and its impact on physical and psychological health demands a more effective model of holistic, integrated care. The evolution of integrated care systems (ICSs) in the UK presents an important opportunity to explore areas of mutual benefit to LTC, multi-morbidity and Long COVID care. There may be benefits in comparing and contrasting ICPs for Long COVID with ICPs for other LTCs. This study aims to evaluate health services requirements for ICPs for Long COVID and their applicability to other LTCs including multi-morbidity and the overlap with medically not yet explained symptoms (MNYES). The study will follow a Delphi design and involve an expert panel of stakeholders including people with lived experience, as well as clinicians with expertise in Long COVID and other LTCs. Study processes will include expert panel and moderator panel meetings, surveys, and interviews. The Delphi process is part of the overall STIMULATE-ICP programme, aimed at improving integrated care for people with Long COVID.
Journal Article
Understanding Barriers to Patient Access of Primary Care Mental Health Care Services in England
2020
Common mental health problems affect individuals, communities, societies, and economies worldwide. There are psychological treatments which have been shown to effectively support people to reduce mental health symptoms; in England these are offered by NHS Improving Access to Psychological Therapy (IAPT) services. This thesis presents mixed-methods research focused on understanding the barriers to accessing these psychological treatments for people in England who seek support for common mental health problems. Barriers to access these treatments are considered to affect over 60% of referrals made. A mixed-methods systematic review of the international literature was completed to identify factors which affect attendance to initial appointments at primary care mental health services offering similar treatments to those offered by IAPT services. Following this, an analysis of 97,020 referrals made to five IAPT services in the North of England identified characteristics associated with increased risk of non-attendance at initial IAPT appointments. Finally, an interview study explored the experiences of the IAPT referral-to-treatment pathway from three perspectives: referrers, IAPT practitioners, and people who had been referred but not attended initial IAPT appointments. Findings from the three components of this thesis demonstrate that the mental health problem experienced by people seeking support, and the ways people reflect upon their mental health influence decisions around initial appointment attendance. The experiences people have with services offering support are important, particularly in relation to communication and waiting times. Differences between services, and the source of referrals are significantly associated with initial appointment non-attendance at IAPT services. There is a need for IAPT services to provide consistency in the reporting of referral data, and address the volume of missing data from referrals, to fully investigate the level of non-attendance to IAPT assessment appointments.
Dissertation