Conference Proceedings

British Psycho-Social Oncology Conference – Online – April 2022 – Poster presentation

Background: Cancer screening programmes are used to improve survival and reduce mortality of cancer, through early identification and thus treatment. The physical health of People with Learning Disabilities (PwLD) or Severe Mental Illness (PwSMI) is poorer than the general population, leading to a reduced life expectancy in both populations. One condition causing premature or avoidable deaths in both populations is cancer. Aim: To identify how cancer screening services can be adapted to support the uptake of PwLD and PwSMI. Methods: A mixed methods study underpinned by the Normalisation Process Theory. Firstly, a mixed methods systematic review will be completed to identify the barriers and facilitators for PwSMI in accessing cervical, breast and colorectal cancer screening. Semi-structured interviews of up to 36 PwSMI from the North-East and North Cumbria, in under-represented group of PwSMI who have not been represented in the research included in the systematic review, will be undertaken. Secondly, the results from the systematic review and the interviews will be triangulated with previous research that involved PwLD and focused on access to cancer screening. We will use Farmer’s triangulation protocol to identify common barriers and facilitators across PwSMI and PwLD, as well as population specific considerations, in accessing cancer screening. The last phase of the research will be to plan and design a Delphi study. This will involve stakeholders in cancer screening (e.g., screening staff and commissioners) to come to a consensus on the ease and practicality of implementing any recommendations developed through the primary research and triangulation work. Conclusions: This research will help understand the barriers to accessing cancer screening services for both populations and identify methods to facilitate informed and shared decision making when   progressing through the screening pathway, for both PwLD and PwSMI, which may then aid in making reasonable adjustments to practice.

NIHR ARC NENC – Health and Care Inequalities and Prevention National Symposium – York – November 2022

 

Background: Research suggests the occurrence of most cancers is similar amongst People with Severe Mental Illness (PwSMI) and People with Learning Difficulties (PwLD) and those without. However, PwSMI and PwLD are nearly 25% less likely to receive cancer screening and tend to die 15-20 years earlier than other people (Public Health England, 2021a). Screening inequalities currently exist amongst PwSMI and PwLD (Public Health England, 2018), as well as receiving a poorer standard of care (Public Health England, 2021b), and having poor self-management (McMahon, 2019). In the UK there are three national cancer screening programmes (breast, cervical and colon) to identify the early presence of cancer. Statistics highlight that PwSMI and PwLD are less likely to attend cancer screening invitations than the general population (Public Health England, 2021b). This has left a knowledge gap surrounding what barriers and facilitators are associated with cancer screening for PwSMI and PwLD.  Aim: This NENC ARC funded (2021/22) research study aims to identify reasonable adjustments that can be embedded throughout the cancer screening pathways to ensure person centred screening services, which may support uptake and participation of PwLD and/or PwSMI.  Methods: An 18-month project will be comprised of two work packages (WP) and will be completed across the North East and North Cumbria (NENC). WP1 aims to identify the barriers and facilitators for PwSMI in accessing cervical, breast and colon cancer screening. This will be achieved through a systematic review (WP1a) and semi-structured interviews of up to 36 diagnosed PwSMI with cancer screening experience (WP1b). People will be identified from a range of settings across the NENC, including through gatekeepers, charities, and social media. WP2a involves triangulating the results of the semi-structured interviews and systematic review with existing research (Byrnes et al., 2019) to inform recommendations for practice and inform the three cancer screening programmes. Following the triangulation, WP2b will be to plan and design a Delphi study. This will involve stakeholders in cancer screening to come to a consensus on the ease of implementing the recommendation, the barriers to implementation, and future research priorities. This research will be underpinned by Normalisation Process Theory.  Discussion: Through Patient and Public Involvement (PPI), this project will be shaped by the voices of Experts by Experience (EbE). Three EbE with SMI will be fully engaged in the design, evaluation, and dissemination of research outputs, with a further three EbE with LD being recruited mid-way through the study. Findings will be disseminated (through infographics, blog posts and academic publications) to commissioners, National Health Service (NHS) bodies and healthcare providers who will be able to use this research and its person-centred recommendations to improve cancer screening pathways and create a positive future impact for PwSMI and/or PwLD. This will be achieved by ensuring the barriers to, and facilitators of access are identified. This in turn will contribute to equity of access to healthcare services by PwSMI and PwLD and supporting their opportunities for a healthy life.

NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) Inequalities Theme Event – Northumbria University – November 2022

Background: The physical health of people with learning disabilities and people with a severe mental illness is poor when compared to the general population, leading to a reduced life expectancy in both populations. One condition causing premature and preventable deaths in these populations is cancer. In the UK there are three national cancer screening programmes (breast, cervical and colon) to identify the early presence of cancer, and evidence shows uptake of the three cancer screening programmes remains low.  As a result of this, our study wants to understand the barriers and facilitators for people with severe mental illness accessing cancer screening. The results focusing on people with a severe mental illness will be triangulated with research that focuses on people with learning disabilities to identify common barriers and facilitators across both groups, as well as population specific barriers and facilitators.  To do this, a mixed methods study comprising of 1) a mixed methods systematic review and 2) semi- structured interviews speaking to 36 people with severe mental illness about their cancer screening experiences. Recruiting eligible people with a diagnosed severe mental illness through NHS services, charities, and social media. Participants will be asked to have a discussion, lasting up to one hour, with a member of our research team at a place convenient to them.  Public Involvement and Community Engagement (PICE): PICE plays a major part of our research and runs throughout the study. An Experts by Experience Advisory Group (EbEAG) has been set up comprising of three People with severe mental illness (currently employed) and three people with learning disabilities (to be recruited for the second phase of the study) to support the research. The experts by experience have currently helped in the recruitment phase of the study, attended a meeting and have offered us advice on our ethics application. Moving forward, they will be engaged in the design, management, analysis, evaluation, and dissemination of research outputs. Co-production has been achieved by involving people with severe mental illness in sense checking the systematic review search strategy and co-designing the participant information sheet and interview schedule. Throughout the project, the EbEAG will meet regularly with the research team, and be invited to attend the project advisory board.  We have developed a table which captures the task, aims, methods, results, discussions and reflections of all our communications with the experts by experience. By reflecting on our communications, we aim to improve the quality, transparency, and consistency of our PICE to ensure optimal results. Lastly, we hope to build and maintain the relationships we develop with our PICE members, allowing for personal growth and development, as well as continuous reflection amongst the research team. Additionally, our project advisory board is formed of members of the NHS organisations, General Practices, Charity organisations, universities, and a member of NENC ICS Parity of Esteem. By having their advice, we are striving to ensure our research is as useful and meaningful to the public and local communities as possible.

NIHR Multiple Long Term Conditions Conference – Online – February 2023

Health Service Research UK Conference – Birmingham – July 2023

Background: Research suggests the occurrence of most cancers is similar amongst People with Severe Mental Illness (PwSMI) and those without. Yet, PwSMI are nearly 25% less likely to receive cancer screening and tend to die 15-20 years earlier than other people. However, little is known about what barriers PwSMI face in accessing cancer screening and facilitators that can help people decide to attend, and then access screening. Therefore, the aim of this systematic review was to synthesise the evidence of the barriers and facilitators on PwSMI accessing cervical, breast or colorectal cancer screening. Methods: Six electronic (CINAHL, MEDLINE, PsycINFO, EMBASE, SCOPUS, and ProQuest Nursing & Allied Health Database) and two grey literature databases (MedNar and Google Scholar) were searched in May 2022. Inclusion criteria were developed prior to the search strategy and limited the results to; English language; focused on ‘severe mental illness’, cancer screening (breast, cervical, and colorectal); and barriers and facilitators to attending the screening. There was no restriction to the study location and design, or the date published. Sifting was completed using Endnote 20 and data was extracted into a Microsoft Excel spreadsheet with predetermined categories for data extraction and analysed using framework analysis in NVIVO, with the constructs of Normalisation Process Theory (NPT) being applied. Results: The search of the databases yielded 923 records. Of these, 17 papers met the inclusion criteria and were included in the review. Papers were published between 2006-2021, primarily from the United States of America (n=10), and mainly adopted quantitative methods (n=15). Most papers investigated mixed cancer types (for example cervical and breast) (n=10) and schizophrenia was the most independently reviewed SMI in six papers. Preliminary findings (due to be completed by March 2023) highlighted common barriers to cancer screening for PwSMI such as low income, not having a family physician, reduced access and continuity of care, and a lack of knowledge of cancer screening. While common facilitators such as good communication between clinicians and service users, available support from family and friends, and trust in healthcare professionals, were found to help PwSMI attend cancer screening. Findings from healthcare professionals indicate that cancer screening may not be a priority when promoting health and they may lack knowledge surrounding screening. Mental health and screening professionals seem to be aware of the barriers PwSMI may face, although there is no systematic approach to help overcome them, and additional training is required. During analysis, the barriers and facilitators will be mapped onto NPT constructs (coherence, cognitive participation, collective action, and reflexive monitoring) and will be completed to share the results for the conference. Implications: Preliminary findings indicate how PwSMI face multiple barriers in attending cancer screening, which in turn, is negatively affecting their uptake rates for cancer screening and may contribute to shorter life expectancies. These factors may not be faced by those without an SMI, and could highlight an inequality in accessing cancer screening, as the persons barriers are not being identified and reasonable adjustments are not being put in place to help them attend and complete screening. The preliminary findings from the healthcare professionals highlighted the challenges (a lack of knowledge on screening, and a need for further training) the services face in relation to cancer screening and how more needs to be done to improve this for PwSMI moving forward. Overall, NPT will provide the study with a method to understand how to implement, embed, and integrate recommendations into cancer screening settings. The findings of the review will be combined with the data from interviews with PwSMI to develop and enhance recommendations identified in this review, to make cancer screening person-centred.

Health Service Research UK Conference – Newcastle- July 2025

ABSTRACT 1: A qualitative study using Normalisation Process Theory to explore barriers and facilitators towards people with Bipolar disorder going to or completing cancer screening.

Background: Bipolar disorder affects 1.3 million people in the United Kingdom. People with Bipolar disorder are less likely to attend or complete cancer screening. Screening for cancer of the cervix, breast, and colon can mean cancers are identified earlier when they are more treatable. The interviews aimed to explore barriers, facilitators, and knowledge of cancer screening by people with bipolar disorder. Methods: Semi-structured interviews were completed either face-to-face in person, over Microsoft Teams, or via the telephone. The participants chose how they wanted to take part, and whether they talked about cervical and breast screening, colorectal screening, or all three screening programmes. People were identified and invited to take part through three NHS Foundation Trusts, two GP surgeries, social media, charity organisations, and two Universities, in the North-East and Cumbria. Data collection took place between January 2023 and June 2023. The interviews were recorded, transcribed verbatim, and analysed using Framework Analysis that was in line with the four constructs of Normalisation Process Theory (NPT); coherence, cognitive participation, collective action, and reflexive monitoring. We combined the data on cervical and breast screening given the similarities in screening invitations and procedures (e.g. invited by letter, a healthcare professional completing the screening). Ethical approval was obtained from a University and the Health Research Authority. Three experts by lived experience with mental illness supported the development of research material, including co-producing the interview questions, and piloting them. Results: 27 people with bipolar disorder completed an interview (n=21 females; n=6 males). The average age was 43 years (range of 25-68 years), and most people (n=14) were white British. Cervical and breast screening: Under coherence, most did not know the specific requirements of screening and what taking part in screening entailed; cognitive participation highlighted that the person’s mental health state would impact upon going to cervical/breast screening appointments as well as knowing where to go for the appointment and getting to unfamiliar locations. Collective action to attend and have screening focused on the screening staff attitudes towards their mental health and making sure the person with Bipolar disorder has a positive experience of screening. Reflecting upon their screening experience, many highlighted their relief at attending and completing screening, with those who did not attend highlighting better communication with healthcare staff, and having the option of somebody attending the appointment for support would help future attendance. Concerning colorectal screening: knowledge of screening was mixed with some people not knowing this screening programme existed. Cognitive participation focused on concerns about how to collect the stool sample, collective action focused on the need for support and help from someone to ensure the kit is completed correctly, and as such some people wanted the option to complete screening in hospital or their GP surgery. Finally, reflecting upon their experiences of how they would feel if they completed colorectal screening, participants primarily spoke of an easier way to seal the kit, knowing if there was a delay in getting their results, and the need for a greater understanding surrounding their mental health. Limitations and Implications: The sample involved in the interviews were largely from white backgrounds, and from the North-East and North Cumbria. We involved people regardless of whether they had completed screening. This provided a greater exploration of why people chose to attend screening or not. The barriers identified document the multiple reasons people with Bipolar disorder may not go to cancer screening, or have negative experiences. Implementing recommendations to reduce the barriers may help future attendance, and improve the experience of people, which may ensure future attendance.

ABSTRACT 2: Recommendations for making cancer screening person-centred for people with learning disabilities and people with severe mental illness

Background: People with learning disabilities, and people with severe mental illness are less likely to attend or complete cancer screening than the general population. We aimed to identify common barriers and facilitators across people with severe mental illness and people with learning disabilities, as well as population-specific considerations, in deciding to attend and then accessing cervical, breast, or colorectal cancer screening. Methods: Following the Farmers triangulation protocol, we triangulated data from seven different sources including systematic reviews, interviews with people with bipolar disorder, a Q methodology study involving people with learning disabilities and their carers, and a rapid scoping review. Any data that related to barriers or facilitators to cancer screening was extracted from each piece of work. The extracted data was thematically coded, following a systematic process of rating and coding. Two people extracted data into a Microsoft Excel spreadsheet. One person developed the initial list of barriers and facilitators. The data was added to categories of: Learning disabilities specific, Severe mental illness specific, or overlapping (meaning they were similar across both populations). The academic team and people with lived experience of severe mental illness or learning disabilities (who supported PPIE activity throughout the study) met twice and discussed the initial coding. Following minor changes, the experts by experience and research team met again and discussed what recommendations could be put in place to reduce the agreed-upon barriers and facilitators. The recommendations were captured on flip chart paper and notes were taken from a Dictaphone recording. Following this group discussion, the recommendations were then categorised under before screening, during screening, and after screening. Results: In total, 99 individual recommendations were developed, covering the three screening programmes. Recommendations to reduce the common barriers for people with learning disabilities, and people with severe mental illness before screening focus on offering a trial appointment before being invited to screening. This is so the person knows what will happen and what they need to do and ensure screening staff communicate effectively on what will happen during and after screening. During cervical and breast screening appointments, specific actions focused on reducing pain and increasing appointment length. Following screening, the focus was on ensuring the person knows what will happen after screening to reduce fear and anxiety. Specific recommendations for people with learning disabilities focused on colorectal screening. These recommendations revolved around the need to increase awareness of colorectal screening, including providing accessible information, and getting support to complete colorectal screening such as from healthcare staff. In addition, specific recommendations for people with severe mental illness highlighted the need for information on screening location, implementing ways the person can temporarily stop contact about screening if the person is too unwell to attend screening due to their current mental health, improving waiting areas and screening environments to be homely and welcoming, and simplifying the home testing kit for colorectal screening to improve the collection process and provide direction on returning the testing kit. Limitations and Implications: We were able to triangulate the data from a range of sources, that represent the published perspectives of people with severe mental illness and people with learning disabilities. However, this data is primarily from the North-East and North Cumbria region of England.  We have developed recommendations that if implemented can support both populations to attend or complete cervical, breast, and/or colorectal screening. We have also highlighted several population-specific recommendations. These recommendations can support cancer screening services being improved to be person centred, as opposed to a one-size-fits-all system.