A comparison of patient‐reported mental health outcomes for the Department of Veterans Affairs' regional telehealth and Community Care Programs

ObjectivesTo compare patient‐reported outcomes for veterans with limited access to Department of Veterans Affairs (VA) mental health services referred to the Veterans Community Care Program (VCCP) or regional telehealth Clinical Resource Hubs‐Mental Health (CRH‐MH).Data SourcesThis national evaluation used secondary data from the VA Corporate Data Warehouse, chart review, and primary data collected by baseline survey between October 8, 2019 and May 27, 2020 and a 4‐month follow‐up survey.Study DesignA quasi‐experimental longitudinal study design was used to sample 545 veterans with VCCP or CRH‐MH referrals for new treatment episodes. Patient‐reported outcomes included symptom severity, perceived access, utilization, and patient‐centeredness.Data CollectionDuring the baseline and follow‐up surveys, all veterans were administered the Patient Health Questionnaire‐8 (PHQ‐8) to assess depression severity, and veterans with a provisional diagnosis of posttraumatic stress disorder (PTSD) were also administered the PTSD Checklist for DSM‐5 (PCL‐5) to assess PTSD symptom severity. The 4‐month follow‐up survey also asked about perceived access using the Perceived Access Inventory, the number of encounters, and patient‐centeredness of care using the Patient‐Centered Care portion of the Veterans Satisfaction Survey.Principal FindingsResults indicated that compared to VCCP consults, veterans with CRH‐MH consults reported 0.65 (CI₉₅ = 0.51–0.83, p < 0.01) times the number of barriers to care, but a non‐significant lower number of encounters (−0.792, CI₉₅ −2.221, 0.636, p = 0.28). There was no significant (p = 0.24) difference in satisfaction with patient‐centeredness, with both groups “agreeing” on average to positively worded questions. Veterans in both groups experienced little improvement in depression or PTSD symptom severity, and there were no clinically meaningful differences between groups.ConclusionsOverall findings indicate that the CRH‐MH and VCCP generate similar patient‐reported outcomes. Future research should compare the quality and cost of care delivered by the VCCP and CRH‐MH programs.     

Improving the depth of data quality or increasing confusion? Reflections on a data analysis involving members of a self‐help group for relatives of people living with dementia

BackgroundPublic involvement in research to improve data quality and to empower different stakeholders is good scientific practice, but rarely implemented across all research phases.ObjectiveThis article reports on an attempt to involve members of a self‐help group for relatives of people living with dementia as co‐researchers in the data analysis in a short‐term format.MethodsOne researcher identified statements about assistive technologies from 17 interviews with people living with dementia and informal caregivers. Two researchers and six co‐researchers independently assigned pre‐defined values to these statements. Subsequently, we compared the values of the researchers and co‐researchers.ResultsThe members of the self‐help group identified four original values not considered by the researchers: consent, inclusion, participation and respect.DiscussionThe involvement of co‐researchers led to an improvement in the depth of data quality through the joint identification of values concerning assistive technology. Language barriers between researchers, co‐researchers and interview participants impeded the data analysis.ConclusionThe challenges and benefits of a participatory data analysis shown here can provide a basis for recommendations for target group‐specific research involvement. Our recommendations relate to the recruitment of co‐researchers, requirements for conducting a participatory data analysis and the participation degree of people involved.Patient or Public ContributionThe group of co‐researchers participating in the data analysis consisted of relatives of people living with dementia.     

Prioritizing Chinese medicine clinical research questions in cancer palliative care from patient and caregiver perspectives

BackgroundChinese medicine (CM) modalities, including acupuncture and Chinese herbal medicine (CHM), are popular palliative interventions among patients with cancer, but further clinical research is required to assess their effectiveness and safety.ObjectiveTo prioritize top ten important CM clinical research questions from patients with cancer, cancer survivors and caregivers’ perspectives via a face‐to‐face prioritization workshop in Hong Kong.MethodsA list of 25 CM clinical research questions for cancer palliative care, which were identified from existing systematic reviews (SRs) and overview of SRs, was presented to 17 participants (patients with cancer [n = 5], cancer survivors [n = 6] and caregivers [n = 6]). The participants were then invited to establish consensus on prioritizing top ten research questions.ResultsAmong the top ten priorities, five (50%) focused on acupuncture and related therapies, while five (50%) were on CHM. The three most important research priorities were (i) manual acupuncture plus opioids for relieving pain; (ii) CHM for improving quality of life among patients receiving chemotherapy; and (iii) concurrent use of CHM plus loperamide for reducing stomatitis.ConclusionThe top ten participant‐endorsed CM clinical research priorities for cancer palliative care can guide local researchers on future direction. They can also inform local research funders on patient‐centred allocation of limited funding. Under limited research funding, the most important co‐prioritized research question from professional and patient perspectives may be addressed first.Patient or Public ContributionPatients with cancer, cancer survivors and caregivers participated in conduct of the study to prioritize CM clinical research questions.     

Mitigating unintended consequences of co‐design in health care

BackgroundCo‐design and associated terms are increasingly being used to facilitate values‐based approaches to health‐care improvement. It is messy and complex, involving diverse actors.MethodsWe explore the notion that initiatives have outcomes other than initially planned is neither new nor novel but is overlooked when thinking about co‐design. We explore some of the unintended consequences and outline some optimal conditions that can mitigate challenges.DiscussionAlthough co‐design approaches are being applied in health care, questions remain regarding its ability to produce gains in health outcomes. Little is known about determining whether co‐design is the most suitable approach to achieve the given project goals, the levels of involvement required to realize the benefits of co‐design or the potential unintended consequences. There is a risk of further marginalizing or adding burden to under‐represented populations and/or over‐researched populations.ConclusionUndertaking a co‐design approach without the optimal conditions for inclusive involvement by all may not result in an equal partnership or improve health or care quality outcomes. Co‐design requires on‐going reflective discussions and deliberative thinking to remove any power imbalances. However, without adequate resources, a focus on implementation and support from senior leaders, it is a tough ask to achieve.Patient or Public ContributionThis viewpoint article was written by two academics who have undertaken a significant amount of PPI and co‐design work with members of the public and patient''s right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.     

Developing an obesity research agenda with British Pakistani women living in deprived areas with involvement from multisectoral stakeholders: Research priority setting with a seldom heard group

IntroductionBritish Pakistani women have exceptionally high rates of obesity and yet are seldom heard in a research priority setting concerning weight management. The objectives of this study were (i) to ascertain what multisectoral professionals perceive to be the most pressing unmet obesity needs or topic areas that need more research in relation to Pakistani women living in deprived areas of Bradford and (ii) to determine the top 10 obesity health priorities for this group to develop an obesity research agenda.MethodsA two‐step process was adopted using the following: (i) a survey of a wide range of multisectoral professional stakeholders (n = 159) and (ii) a ranking exercise involving Pakistani women living in deprived areas of Bradford (n = 32) to select and prioritize their top 10 obesity health concerns and unmet needs from a list of 31 statements identified in the survey and previous research. Survey data were analysed using inductive content analysis and themes were identified. Themes were translated into statements to be ranked by Pakistani women. The ranking exercise was conducted by telephone either via voice or video call. Data were analysed using a reverse scoring system.ResultsSurvey responses were grouped into statements reflecting the following three categories: education needs; healthy behaviour barriers and mental well‐being. The highest rankings were given by Pakistani women to statements on mental health and the need for education. The top 10 prioritized statements were developed with members of the public into an obesity research agenda that reflected the target population.ConclusionActively engaging British Pakistani women in setting research priorities provided a unique opportunity to understand the key areas they think are important for future research. The culminating research agenda can be used by researchers to advance the field of obesity research in Pakistani communities, thus producing research outputs that are relevant to and have impact in this population.Patient or Public ContributionParticipants in the ranking exercise collected data. Public contributors were involved in developing the prioritized statements into a research agenda.     

Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

ObjectiveWe conducted a UK‐wide survey to identify the top 10 research questions for young people''s cancer. We conducted secondary analysis of questions submitted, which were ‘out‐of‐scope’ of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer.DesignJames Lind Alliance Priority Setting Partnership.ParticipantsYoung people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population.MethodsEight hundred and fifty‐five potential research questions were submitted, and 326 were classified as ‘out‐of‐scope’. These questions, along with 49 ‘free‐text’ comments, were analysed using thematic analysis.ResultsThe 375 out‐of‐scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long‐term effects and aftercare support; family support; financial impact; end‐of life care; and research methods and current research.ConclusionsThe need to tailor services, information and communication is a striking thread evidenced across the ‘out‐of‐scope’ questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes.Patient/public contributionsPatients and carers were equal stakeholders throughout.     

Attitudes towards the integration of smoking cessation into lung cancer screening in the United Kingdom: A qualitative study of individuals eligible to attend

IntroductionThere is limited research exploring how smoking cessation treatment should be implemented into lung cancer screening in the United Kingdom. This study aimed to understand attitudes and preferences regarding the integration of smoking cessation support within lung cancer screening from the perspective of those eligible.MethodsThirty‐one lung cancer screening eligible individuals aged 55–80 years with current or former smoking histories were recruited using community outreach and social media. Two focus groups (three participants each) and 25 individual telephone interviews were conducted. Data were analysed using the framework approach to thematic analysis.ResultsThree themes were generated: (1) bringing lung cancer closer to home, where screening was viewed as providing an opportunity to motivate smoking cessation, depending on perceived personal risk and screening result; (2) a sensitive approach to cessation with the uptake of cessation support considered to be largely dependent on screening practitioners'' communication style and expectations of stigma and (3) creating an equitable service that focuses on ease of access as a key determinant of uptake, where integrating cessation within the screening appointment may sustain increased quit motivation and prevent loss to follow‐up.ConclusionsThe integration of smoking cessation into lung cancer screening was viewed positively by those eligible to attend. Screening appointments providing personalized lung health information may increase cessation motivation. Services should proactively support participants with possible fatalistic views regarding risk and decreased cessation motivation upon receiving a good screening result. To increase engagement in cessation, services need to be person‐centred.Patient or Public ContributionThis study has included patient and public involvement throughout, including input regarding study design, research materials, recruitment strategies and research summaries.     

Adolescent and young adult patients as co‐researchers: A scoping review

BackgroundAs part of a research project aimed at evaluating a hospital‐based adolescent transition programme, we asked ourselves what is known about the ethical and methodological challenges of research involving adolescent patients as co‐researchers. The aim of our review was to summarize empirical evidence and identify knowledge gaps about the involvement of young patients as co‐researchers.MethodsWe conducted a scoping review through searches in MEDLINE, EMBASE, PsychINFO, AMED.ResultsWe found reports of young patients being actively engaged as co‐researchers in any stage of a research project, although commonly they were not involved in every stage. Including young patients as co‐researchers is resource demanding and time‐consuming. Involving young patients as co‐researchers contributes to the fulfilment of their right to participation and may improve the relevance of research. Benefits for the young co‐researcher include empowerment, skills building and raised self‐esteem. Few authors go into detail about ethical considerations when involving young co‐researchers. None of the included articles discuss legal considerations.Discussion and conclusionNo lists of recommendations are given, but recommendations can be deduced from the articles. There is need for time, funding and flexibility when including young patients as co‐researchers. Knowledge gaps concern legal and ethical dilemmas of including a vulnerable group as co‐researchers. More reflection is needed about what meaningful participation is and what it entails in this context.Patient or Public ContributionThis review is part of a research project where the hospital youth council has been involved in discussions of focus area and methods.     

A community jury study exploring the public acceptability of using risk stratification to determine eligibility for cancer screening

IntroductionUsing risk stratification to determine eligibility for cancer screening is likely to improve the efficiency of screening programmes by targeting resources towards those most likely to benefit. We aimed to explore the implications of this approach from a societal perspective by understanding public views on the most acceptable stratification strategies.MethodsWe conducted three online community juries with 9 or 10 participants in each. Participants were purposefully sampled by age (40–79 years), sex, ethnicity, social grade and English region. On the first day, participants were informed of the potential benefits and harms of cancer screening and the implications of different ways of introducing stratification using scenarios based on phenotypic and genetic risk scores. On the second day, participants deliberated to reach a verdict on the research question, ‘Which approach(es) to inviting people to screening are acceptable, and under what circumstances?’ Deliberations and feedback were recorded and analysed using thematic analysis.ResultsAcross the juries, the principle of risk stratification was generally considered to be an acceptable approach for determining eligibility for screening. Disregarding increasing capacity, the participants considered it to enable efficient resource allocation to high‐risk individuals and could see how it might help to save lives. However, there were concerns regarding fair implementation, particularly how the risk assessment would be performed at scale and how people at low risk would be managed. Some favoured using the most accurate risk prediction model whereas others thought that certain risk factors should be prioritized (particularly factors considered as non‐modifiable and relatively stable, such as genetics and family history). Transparently justifying the programme and public education about cancer risk emerged as important contributors to acceptability.ConclusionUsing risk stratification to determine eligibility for cancer screening was acceptable to informed members of the public, particularly if it included risk factors they considered fair and when communicated transparently.Patient or Public ContributionTwo patient and public involvement representatives were involved throughout this study. They were not involved in synthesizing the results but contributed to producing study materials, co‐facilitated the community juries and commented on the interpretation of the findings and final report.     

Transitional care for patients with acute stroke—A priority‐setting project

BackgroundThe scope of this priority‐setting process is communication and collaboration in transitional care for patients with acute stroke. Actively involving persons with stroke and their family caregivers is important both in transitional care and when setting priorities for research. Established priority‐setting methods are time‐consuming and require extensive resources. They are therefore not feasible in small‐scale research. This article describes a pragmatic priority‐setting process to identify a prioritized top 10 list of research needs regarding transitional care for patients with acute stroke.MethodsA pragmatic priority‐setting approach inspired by the James Lind Alliance was developed. It involves establishing a user group, identifying the research needs through an online survey, analysing and checking the research needs against systematic reviews, culminating in an online prioritization of the top 10 list.ResultsThe process was completed in 7 months. A total of 122 patients, family caregivers, health personnel and caseworkers submitted 484 research needs, and 19 users prioritized the top 10 list. The list includes the categories ‘patients and caregivers’ needs and health literacy’, ‘health personnel''s common understanding’, ‘information flow between health personnel and patients and caregivers’, ‘available interventions and follow‐up of patients and caregivers’, ‘interaction and collaboration between health personnel and caseworkers across hospital and primary healthcare’ and ‘disabilities after stroke’.ConclusionThis paper outlines a pragmatic approach to identifying and prioritizing users'' research needs that was completed in 7 months. The top 10 list resulting from this priority setting process can guide future research relating to communication and collaboration during the transition from hospital to the community for patients with stroke.Patient and Public ContributionMembers of three stroke organizations participated in the advisory group. They gave feedback on the scope and the process, distributed the surveys and prioritized the top 10 list. Persons with stroke and their caregivers submitted research needs in the survey.     

Experiences of parents whose children participated in a longitudinal follow‐up study

BackgroundLong‐term follow‐up is necessary to understand the impact of perinatal interventions. Exploring parents'' motives and experiences in consenting to their children taking part in longitudinal studies and understanding what outcomes are important to families may enhance participation and mitigate the loss to follow‐up. As existing evidence is largely based on investigators'' perspectives using Western samples, the present pilot study explored parents'' perspectives in a multicultural New Zealand context.MethodsData were generated using semi‐structured interviews with parents whose children had participated in a longitudinal study after neonatal recruitment. Parents'' experiences of being part of the study were analysed thematically using an inductive approach.ResultsParents (n = 16) were generally happy with the outcomes measured. Additionally, parents were interested in lifelong goals such as the impact of parental diabetes. We identified three themes: (1) Facilitators: Research participation was aided by motives and parent and research characteristics such as wishing to help others and straightforward recruitment; (2) Barriers: A hesitancy to participate was due to technical and clinical research aspects, participation burden and cultural barriers, such as complex wording, time commitment and nonindigenous research and (3) Benefits: Children and parents experienced advantages such as the opportunity for education.ConclusionsParents reported positive experiences and described the unexpected benefit of increasing families'' health knowledge through participation. Improvements for current follow‐up studies were identified. Different ethnicities reported different experiences and perspectives, which warrants ongoing research, particularly with indigenous research participants.Patient or Public ContributionNo active partnership with parents of patients took place.     

The impact of Patient and Public Involvement in the SlowMo study: Reflections on peer innovation

BackgroundThe SlowMo study demonstrated the effects of SlowMo, an eight‐session digitally supported reasoning intervention, on paranoia in a large‐scale randomized‐controlled trial with 362 participants with schizophrenia‐spectrum psychosis.AimThe current evaluation aimed to investigate the impact of Patient and Public Involvement (PPI) in the SlowMo study.MethodPPI members were six women and three men from Sussex, Oxford and London with experience of using mental health services for psychosis. They received training and met at least 3‐monthly throughout the project. The impact of PPI was captured quantitatively and qualitatively through (i) a PPI log of recommendations and implementation; (ii) written subjective experiences of PPI members; (iii) meeting minutes; and (iv) outputs produced.ResultsThe PPI log revealed 107 recommendations arising from PPI meetings, of which 87 (81%) were implemented. Implementation was greater for recruitment‐, data collection‐ and organization‐related actions than for dissemination and emergent innovations. Qualitative feedback revealed impacts on study recruitment, data collection, PPI participants'' confidence, knowledge, career aspirations and society more widely. Outputs produced included a film about psychosis that aired on BBC primetime television, novel webpages and journal articles. Barriers to PPI impact included geography, travel, funding, co‐ordination and well‐being.DiscussionA future challenge for PPI impact will be the extent to which peer innovation (innovative PPI‐led ideas) can be supported within research study delivery.Patient and Public ContributionPlanned Patient and Public Contribution in SlowMo comprised consultation and collaboration in (i) design, (ii) recruitment, (iii) qualitative interviews and analysis of service users'' experiences of SlowMo therapy and (iv) dissemination.     

Participatory health research with migrants: Opportunities,challenges, and way forwards

ContextMigration is one of the most politically pressing issues of the 21st century but migrant health remains an under‐researched area. The International Collaboration for Participatory Health Research (ICPHR) working group on migration developed this position statement to address opportunities and challenges in relation to migrant health. It aims to contribute to a shift from a deficit model that sees migrants as passively affected by policies to their reconceptualization as citizens who are engaged in the co‐creation of solutions.MethodsThis paper examines the opportunities and challenges posed by the use of PHR with migrants. It draws on a broad literature to provide examples of successful PHR with migrants and highlights critical issues for consideration.FindingsSuccessful initiatives illustrate the value of engaging migrants in the definition of the research agenda, the design and implementation of health interventions, the identification of health‐protective factors and the operationalization and validation of indicators to monitor progress. Within increasingly super diverse contexts, fragmented community landscapes that are not necessarily constructed along ethnicity traits, inadequate structures of representation, local tensions and operational barriers can hamper meaningful PHR with migrants.ConclusionFor each research context, it is essential to gauge the ‘optimal’ level and type of participation that is more likely to leverage migrants’ empowerment. The development of Monitoring and Evaluation tools and methodological strategies to manage inter‐stakeholder discrepancies and knowledge translation gaps are steps in this direction.Patient or public contributionThis paper draws from contributions of migrant populations and other stakeholders to policymaking.     

Assessing the efficacy of coproduction to better understand the barriers to achieving sustainability in NHS chronic kidney services and create alternate pathways

ContextToo many people living with chronic kidney disease are opting for and starting on hospital‐based dialysis compared to a home‐based kidney replacement therapy. Dialysis services are becoming financially unsustainable.ObjectiveThis study aimed to assess the efficacy of coproductive research in chronic kidney disease service improvement to achieve greater sustainability.DesignA 2‐year coproductive service improvement study was conducted with multiple stakeholders with the specific intention of maximizing engagement with the national health kidney services, patients and public.Setting and ParticipantsA national health kidney service (3 health boards, 18 dialysis units), patients and families (n = 50), multidisciplinary teams including doctors, nurses, psychologists, social workers, and so forth (n = 68), kidney charities, independent dialysis service providers and wider social services were part of this study.FindingsCoproductive research identified underutilized resources (e.g., patients on home dialysis and social services) and their potential, highlighted unmet social care needs for patients and families and informed service redesign. Education packages were reimagined to support the home dialysis agenda including opportunities for wider service input. The impacts of one size fits all approaches to dialysis on specialist workforce skills were made clearer and also professional, patient and public perceptions of key sustainability policies.Discussion and ConclusionsPatient and key stakeholders mapped out new ways to link services to create more sustainable models of kidney health and social care. Maintaining principles of knowledge coproduction could help achieve financial sustainability and move towards more prudent adult chronic kidney disease services.Patient or Public ContributionInvolved in developing research questions, study design, management and conduct, interpretation of evidence and dissemination.     

An alternate level of care plan: Co‐designing components of an intervention with patients,caregivers and providers to address delayed hospital discharge challenges

ObjectiveTo engage with patients, caregivers and care providers to co‐design components of an intervention that aims to improve delayed hospital discharge experiences.DesignThis is a qualitative study, which entailed working groups and co‐design sessions utilizing World Café and deliberative dialogue techniques to continually refine the intervention.Setting and ParticipantsOur team engaged with 61 participants (patients, caregivers and care providers) in urban and rural communities across Ontario, Canada. A 7‐member Patient and Caregiver Advisory Council participated in all stages of the research.ResultsKey challenges experienced during a delayed discharge by patients, caregivers and care providers were poor communication and a lack of care services. Participants recommended a communication guide to support on‐going conversation between care providers, patients and caregivers. The guide included key topics to cover and questions to ask during initial and on‐going conversations to manage expectations and better understand the priorities and goals of patients and caregivers. Service recommendations included getting out of bed and dressed each day, addressing the psycho‐social needs of patients through tailored activities and having a storyboard at the bedside to facilitate on‐going engagement.Discussion and ConclusionsOur findings outline ways to meaningfully engage patients and caregivers during a delayed hospital discharge. Combining this with a minimal basket of services can potentially facilitate a better care experience and outcomes for patients, their care providers and families.     

INNOVATE Research: Impact of a workshop to develop researcher capacity to engage youth in research

BackgroundEngaging youth in research provides substantial benefits to research about youth‐related needs, concerns and interventions. However, researchers require training and capacity development to work in this manner.MethodsA capacity‐building intervention, INNOVATE Research, was co‐designed with youth and adult researchers and delivered to researchers in three major academic research institutions across Canada. Fifty‐seven attendees participated in this research project evaluating youth engagement practices, attitudes, perceived barriers, and perceived capacity development needs before attending the intervention and six months later.ResultsThe intervention attracted researchers across various career levels, roles and disciplines. Participants were highly satisfied with the workshop activities. Follow‐up assessments revealed significant increases in self‐efficacy six months after the workshop (P = .035). Among possible barriers to youth engagement, four barriers significantly declined at follow‐up. The barriers that decreased were largely related to practical knowledge about how to engage youth in research. Significantly more participants had integrated youth engagement into their teaching activities six months after the workshop compared to those who were doing so before the workshop (P = .007). A large proportion (71.9%) of participants expressed the need for a strengthened network of youth‐engaged researchers; other future capacity‐building approaches were also endorsed.ConclusionsThe INNOVATE Research project provided improvements in youth engagement attitudes and practices among researchers, while lifting barriers. Future capacity‐building work should continue to enhance the capacity of researchers to engage youth in research. Researchers notably pointed to the need to establish a network of youth‐engaged researchers to provide ongoing, sustainable gains in youth engagement.     

Advancing understanding of influences on cervical screening (non)‐participation among younger and older women: A qualitative study using the theoretical domains framework and the COM‐B model

BackgroundEffective screening can prevent cervical cancer, but many women choose not to attend their screening tests.ObjectiveThis study aimed to investigate behavioural influences on cervical screening participation using the Theoretical Domains Framework (TDF) and COM‐B models of behaviour change.DesignA qualitative study and semistructured phone interviews were conducted with women invited for routine screening tests within the national cervical screening programme in Ireland.Setting and ParticipantsForty‐eight women aged 25–65 years were recruited from the national screening register.ResultsSeven core themes were identified that mapped to three COM‐B components and 11 TDF domains: (1) knowledge of cervical cancer and screening, (2) coping with smear tests, (3) competing motivational processes—automatic and reflective, (4) cognitive resources, (5) role of social support, (6) environmental influences and (7) perceputal and practical influences. A range of knowledge about screening, perceived risk of cervical cancer and human papillomavirus infection was evident. Factors that influenced screening behaviours may be hierarchical—some were assigned greater importance than others. Positive screening behaviours were linked to autonomous motivation. Deficits in physical and psychological capability (inadequate coping skills) were barriers to screening, while physical and social opportunity (e.g. healthcare professional ‘champions’) could facilitate participation. Older women raised age‐related issues (e.g. screening no longer necessary) and had more negative attitudes to screening, while younger women identified practical barriers.ConclusionsThis study provides insight into screening participation and will aid development of theoretically informed interventions to increase uptake.Patient or Public ContributionWomen invited for screening tests through the national screening programme were interviewed. A Public & Patient Involvement (PPI) Panel, established to provide input into all CERVIVA research projects, advised the research team on recruitment materials and were given the opportunity to review and comment on the interview topic guide. This panel is made up of six women with various cervical screening histories and experiences.     

Experiences of cervical screening participation and non‐participation in women from minority ethnic populations in Scotland

BackgroundThe introduction of screening in the UK and other high‐income countries led to a significant decrease in the incidence of cervical cancer and increase in survival rates. Minority ethnic groups are often underrepresented in screening participation for reasons that are poorly understood.ObjectiveTo explore experiences of cervical screening participation and non‐participation of women from minority ethnic populations in Scotland and gain insights to support the development of interventions that could potentially support screening participation and thereby reduce inequalities.DesignQualitative comparison group study using in‐depth, semi‐structured individual interviews that were thematically analysed.Setting and participantsThis study took place in Scotland. Fifty women were purposively sampled from four ethnic minority groups: South Asian; East European; Chinese; and Black African or Caribbean. White Scottish women were also interviewed.ResultsMany experiences described were common regardless of ethnicity, such as difficulties managing competing priorities, including work and care responsibilities. However, important differences existed across the groups. These included going abroad for more frequent screening, delayed introduction to screening and not accessing primary care services, language difficulties in health‐care settings despite proficiency in English and not being sexually active at screening commencement. Experiences of racism, ignorance and feeling shamed were also reported.ConclusionsKey differences exist in the experience of minority ethnic groups in Scotland. These offer potential opportunities to reduce disparity and support screening participation including maximizing co‐incidental interactions and developing outreach work.