“Breaking the Silence”: A Qualitative Study Exploring How to Improve Surgical Shared Decision Making for Underserved Groups

“Breaking the Silence”: A Qualitative Study Exploring How to Improve Surgical Shared Decision Making for Underserved Groups | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article “Breaking the Silence”: A Qualitative Study Exploring How to Improve Surgical Shared Decision Making for Underserved Groups Zille HUMA, Christin HOFFMANN, Leila ROOSHENAS, Kerry AVERY, Christie CABRAL, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7525686/v1 This work is licensed under a CC BY 4.0 License Status: Under Revision Version 1 posted 10 You are reading this latest preprint version Abstract Background High quality shared decision making (SDM) is recognised as a cornerstone of modern medical practice, and increasing patient involvement is a key priority in health policy. Approximately 312.9 million patients undergo surgery in the world each year. Effective SDM is crucial for all these patients, yet existing SDM interventions disproportionately benefit individuals with higher education levels, better health literacy, and greater socioeconomic advantage. This qualitative study explored patient experiences of SDM and their views on how to improve it, with particular attention to the needs of marginalised groups. Methods Employing a qualitative study design, face-to-face or remote semi-structured interviews were conducted with community members in two UK locations: the Yorkshire and Humber region, mainly centred in Bradford, and Bristol. We adopted purposive sampling to explore the views of individuals experiencing intersectional health inequalities due to older age, ethnic minority and economically disadvantaged background. Transcripts were thematically analysed using an inductive approach. Results The findings from 31 interviews consist of three main themes on underserved groups’ perceptions about NHS and healthcare professionals, capacity of patients to engage in SDM, feeding back of SDM experience. Notably, the findings highlight that inadequately designed SDM processes and structural barriers fail to accommodate the capacities and needs of underserved patients. Feeding back of the patient’s experience using non-digital (verbal, telephonic or paper based) and multi-lingual options to identify where effective SDM fails and making SDM process adaptive and tailored to the needs of patients are suggested as ways to improve SDM for underserved groups. A set of recommendations to make SDM more equitable are provided. Conclusions Addressing the unique challenges faced by underserved groups in SDM requires a multifaceted approach that includes enhancing communication, building trust, addressing technological barriers, and respecting cultural values. The insights from participants highlight the need for tailored interventions and flexible, inclusive strategies to ensure equitable and effective SDM for all patients. The findings from this study will inform the design of a decision support intervention to improve SDM before surgery. Surgery shared decision making underserved groups decision support intervention feeding back system inclusivity 1. Background Shared decision-making (SDM) is a collaborative process in which patients work together with healthcare professionals to make informed decisions between healthcare options [ 1 ]. A successful SDM process involves discussion of accurate information about all available options and their potential outcomes, sharing reasoning and preferences for each option, and agreeing on a treatment plan considering the individual needs, values, beliefs, and preferences of the patient and their family [ 2 , 3 ]. Both global and UK policies [ 4 , 5 ] along with professional and regulatory guidelines [ 6 ] advocate for SDM across all healthcare settings. National Institute for Health and Care Excellence (NICE) guidelines emphasise the need to make shared decision-making part of everyday care in all healthcare settings [ 7 ]. This approach is crucial for the 312.9 million patients globally, including approximately 5.1 million people in the UK, undergoing surgery annually [ 8 ], as surgical interventions are often immediate and irreversible, unlike many other forms of clinical care Evidence shows that effective SDM improves patients’ understanding of their options, increases satisfaction with their care, reduces decisional conflict, and supports a process that aligns with their preferences and values [ 9 – 11 ]. SDM processes can lead to medical adherence [ 12 ], better treatment decisions [ 13 ], and reduced use of health services for high risk and low value procedures [ 14 ]. High-quality SDM may also help manage treatment harms by setting more realistic expectations [ 15 ] and improving self-management [ 16 ]. However, despite the benefits of SDM, a systematic review of 22 surgical studies revealed that only 36% of 13,176 patients felt their consultations were shared [ 17 ]. Reasons for poor SDM can include surgeons underestimating patients’ information needs [ 18 ] and surgical risks going undisclosed [ 19 ], leaving patients feeling uninformed [ 8 ]. Individuals from underserved groups, such as older adults, and those from ethnic minority and socioeconomically deprived backgrounds, are disproportionally affected by poor SDM [ 20 ]. Studies show that those who experience lower self-efficacy and limited health literacy [ 21 ] are more vulnerable in patient-provider relationships [ 22 ]. Without specific consideration of the needs of underserved groups, SDM interventions may serve to perpetuate existing health inequalities. Tailored approaches to support patients from marginalised groups in effectively engaging in SDM requires a deep understanding of their experiences and perspectives on how to improve SDM. However, there is a notable lack of published evidence on the views, needs, and preferences of patients in the UK from underserved groups to engage proactively with surgical care pathways [ 23 ]. The present study aims to explore the perspectives of patients from underserved communities towards making treatment decisions with surgical teams and their engagement with the care pathway. The findings from this study can inform future development and tailoring of SDM interventions to ensure inclusivity and to avoid widening health inequalities. 2. Methods 2.1. Study context This qualitative study is part of a larger programme of work which seeks to co-develop a decision support intervention that uses a system for real-time monitoring and feedback with the aim to improve shared decision making for surgical patients, the ALPACA study [ 24 ]. There are three phases with the following objectives: Phase 1: assess the feasibility, usability, and the views of patient and health professionals on implementing an automated system to monitor the SDM process for surgery in real time. Phase 2: co-develop and refine the intervention with patients and professionals to understand how the intervention works, for whom and in what context using findings from Phase 1. Phase 3: evaluate the effectiveness, cost-effectiveness and implementation of the intervention to improve patient and health service outcomes in the English National Health Service (NHS) [ 24 ]. The present study is part of qualitative research within Phase 1 with an aim to understand views of underserved groups to inform the design of a decision support intervention that uses real-time feedback from patients on their experiences of the SDM process. The intervention will comprise (1) efficient, real-time evaluation of patient experiences of SDM at scale, (2) prompt feedback of individual patient-reported SDM experiences to care teams before surgery, and (3) actions that support meaningful changes in how patients and professionals make decisions about surgery, both individually and collaboratively. Creating methods for efficient evaluation of SDM will enhance the consistency and relevance of SDM outcome measurement. The findings from this qualitative research are also being used to co-develop an initial programme theory informing phase 2. 2.2. Patient and public involvement The need for this research, centred on understanding the experiences and attitudes of underserved groups towards SDM, was born out of consultations with PPI stakeholders who identified inclusivity as a key uncertainty in the ALPACA project. A dedicated patient advisory group (PAG) of ALPACA study consisting of members of the public from diverse socio-economic and ethnic backgrounds and with experience of surgical SDM, supported development of the research question, the design and piloting of the interview topic guide, data analysis and interpretation of study findings. Patient advisors made a regular and significant contribution in interpreting the interview data by reading the transcripts and sharing their reflections with the researchers. A patient/public co-author has reviewed and commented on a draft of this manuscript. GRIPP2 reporting [ 25 ] is included in appendix 1, to provide details of PPIE activities. 2.3. Study design The study used a qualitative research design to capture rich and complex narratives on SDM and understand SDM through participants’ lenses [ 26 ]. Presentation of recruitment, data collection and analysis are aligned with the consolidated criteria for reporting qualitative research (COREQ) [ 27 ]; see appendix 2. 2.4. Setting We recruited participants from the community from two regions of England; Yorkshire and Humber (primarily Bradford) and Bristol. A city located in the north of England, UK, Bradford is ethnically, culturally and linguistically diverse, with high levels of deprivation. The Index of Multiple Deprivation ranks Bradford as the 13th most deprived local authority in England (out of 317). It is also the 5th most income deprived and the 6th most employment deprived in England [ 28 ]. In the 2021 Census, 57% of the population identified as White British and 32% identified as Asian or Asian British, with the remainder of the population belonging to other ethnic groups, including Mixed or Multiple ethnic groups: Black, Black British, Caribbean, or African, and Roma [ 29 ]. Recruitment was primarily conducted in Bradford; however, to ensure diversity in the sample, additional participants were recruited from deprived neighbourhoods in the wider Yorkshire and Humber region, including East Leeds and Hull. Bristol, by contrast, is ethnically less diverse than Bradford, but it contains several pockets of deprivation. 2.5. Participants Sampling Purposive sampling was employed, targeting individuals experiencing intersectional inequalities in terms of older age, ethnicity, and socio-economic status. This approach, commonly used in qualitative health research to identify information-rich cases [ 30 ] allowed us to recruit participants with diverse backgrounds, knowledge and experiences relevant to the study aim [ 31 ]. We sampled participants to include those with language and communication barriers, the digitally excluded, and recent migrant and asylum seekers. Sociodemographic data was collected from participants following recruitment (see Table 1 ) which aided determination of representation of underserved groups. We reviewed participant characteristics as recruitment progressed with a view to adjusting recruitment efforts to sample those underrepresented, to ensure maximum variation in socio-demographic characteristics. Recruitment We approached and identified participants through community organisations, community centres, public libraries, public events, patient and public advisory groups, and through public facing research recruitment information sheets circulated digitally and physically. We approached most of the participants face-to-face for the initial discussions. These discussions often comprised multiple meetings. If participants preferred, we followed up with them by telephone to answer additional questions, confirm consent, or arrange an interview. We aimed to recruit 30–40 participants. We stopped recruiting new participants once no new insights were emerging, and the sample held sufficient diversity to represent individuals with protected characteristics and intersecting inequalities, such as ethnicity, age, and socio-economic disadvantage, and relevance in relation to the study aims. This approach aligns with the concept of information power, whereby the adequacy of the sample is determined not solely by size, but by the richness and applicability of the data collected [ 32 ]. We gave verbal and written information about the study aims and participants’ involvement prior to consenting the participants. Participants provided electronic consent through a link to a secure data management platform (RedCap Version 11.1.18) before any study activity commenced. We presented a printed copy of the consent form to participants who were unable to consent digitally or who preferred the paper-based method. Participants were assured of their confidentiality and anonymity of their information and identity and were assured of their right to withdraw from the study at any time. 2.6. Data collection Socio-demographic data Participants provided information on their socio-demographic details including sex, age range, ethnicity, highest level of education, employment, and health and disability status. This information was collected through a researcher-administered questionnaire during the interview. The participants had the option to skip any questions they felt uncomfortable answering. Interviews We conducted in-depth semi-structured interviews with all participants. Topic guide development was informed by the aims and objectives of this research study, intersectionality theory [ 33 ], and the knowledge and experience of team members with expertise in SDM. We piloted and refined the topic guide with input from patient advisors prior to commencing data collection. We further refined the topic guide as the interviews took place to accommodate newly emerging themes and to aid comprehensibility of questions. The topic guide explored key themes aligned with the aims of Phase 1 of the ALPACA study (as described in the context), including patients’ individual experience of SDM, their perspective on the design of real time monitoring and feeding back system to the hospital and the ways to improve SDM (see appendix 3). Two researchers (ZH and CH) carried out the interviews. ZH has a background in social sciences with expertise in qualitative research methods. She is a multi-lingual Urdu and Punjabi native speaker, British Pakistani female, and an embedded applied health researcher based at the Bradford Institute for Health Research. CH is a trained and experienced qualitative researcher with a background in social sciences and health services research. She is a female and of White European ethnicity CH currently works as Research Fellow at the University of Bristol. ZH and CH took reflective notes during the interviews to capture relevant contextual information of the participant and the interview experience. Interviews took place face-to-face, online or over the phone depending on the preference of participant. We conducted face-to-face interviews in various public locations chosen by participants, such as cafes, parks, their homes, or community venues. Interviews were conducted in participants’ preferred language where possible; we conducted interviews in two foreign languages, Urdu and Punjabi, in addition to English language interviews. We gave a £10 voucher to each participant as recognition of their involvement in the research study. 2.7. Analysis Interviews were audio-recorded and transcribed verbatim. English language interviews were transcribed by NHS approved transcription services. ZH translated and transcribed Urdu and Punjabi language interviews. Data analysis followed an inductive thematic analysis approach [ 34 ]. Two researchers [ZH, CH] independently read and re-read transcripts and notes, and generated and assigned codes relevant to excerpts within the transcripts. This process was primarily inductive, with codes developed and iteratively refined through interpretation of the data. However, analysis was also informed by an a priori interest in examining data in relation to the study aims. A proportion of transcripts were double coded by ZH and CH to ensure consistency and to capture the full range of interpretations of the data. This continued until the researchers felt confident that coding adequately represented the data. ZH then applied this coding framework to the full dataset, conducting the coding for all remaining transcripts. The researchers discussed codes and impressions of the data with each other and then with AM, JH, wider multi-disciplinary team members, and the PAG members, and themes were crafted through collating similar codes. Findings were reviewed in iterative rounds of coding and theme identification every 5–7 transcripts. The researchers also used interviewers’ reflective notes written during or after the participants’ interviews to inform analysis and ensure rigour [ 35 ]. 3. Findings A total of 34 participants were recruited for interview between October 2023 and July 2024. Two participants withdrew prior to interview, and one withdrew after interview, meaning this study reports on interview data from 31 participants (N = 19 Bradford site, N = 12 Bristol site). Interviews lasted on average 49 minutes (range: 26–79 minutes). Of the 31 participants, 21 had direct experience of surgical SDM, five had experience as a next-of-kin related to surgical SDM, and five had direct experience of SDM within a broader healthcare context. A summary of participant characteristics can be found in Table 1 . Table 1 Participant characteristics (N = 31) Sex; Female 22 Male 9 Age; mean (range) 66.5 (25–92) Country of birth; UK 11 Pakistan 8 Kenya 4 Other* 8 Language spoken at home; English 10 Urdu 6 Punjabi 3 Other** 12 Ethnicity (self-identified); Asian Pakistani 9 White British 7 Black African 3 Other*** 12 Religion; Islam 15 Christianity 8 No religion 4 Atheist 2 Hindu 2 Education; Educated beyond GCSE-level (or equivalent) 15 Educated until GCSE-level (or equivalent) 8 No formal education 7 Not reported 1 IMD decile; mean (range) 1 1 (most deprived) 16 2 6 Other**** 9 Occupational status; In employment 13 Retired 11 Not in employment 5 Never been employed 2 *Iran, Zimbabwe, Netherlands, Syria, Bangladesh, Czech Republic, India **Kikuyu, Gujarati, Romani, Pahari-Pothwari, Arabic, Shona, Bengali, Swahili, Hindko, Farsi (Persian), Hindi ***Middle Eastern, Roma-Czech, Afro-Caribbean, Kurd, Asian-Indian, Asian-Bangladeshi, Mixed Asian, British Asian, Black-Caribbean, Mixed ****3, 4, 8, 9, 10 (least deprived), No permanent address Our qualitative analysis is presented according to the three themes developed from the analysis representing the views of participants about surgical pathways and SDM with health professionals. The themes cover a range of factors that shape attitudes towards engaging with care pathways and mechanisms of the SDM process to inform the inclusion of patient feedback about their experience of hospital in future initiatives. Theme 1: Perceptions about the NHS and healthcare professionals Most participants expressed feelings of neglect and distrust towards the NHS which led to disengagement from the health care system and limited participation in SDM processes. Whilst some individual preferences and cultural beliefs also discouraged active involvement in treatment decisions, participants consistently highlighted trust, empathy, and sufficient time as essential for meaningful engagement in the SDM process. We are people, not numbers Many participants perceived apathy from the NHS toward patients, linking it to long and poorly communicated waiting times for consultations and surgical treatments. The uncertainty surrounding surgery timing left patients feeling abandoned and unsure about their treatment timeline. “… I wish I did not have that gap of a whole year where they neglected me and forgot about me while I kept on chasing them like crazy ” (Female, Kurd, 45, Bradford). “… I’m just a number, so do they really care ” (Female, White British, 77, Bradford). Most participants believed that time constraints led to shorter consultations, hindering meaningful discussions with consultants. This limited patients' opportunities for active involvement in surgical decision-making. As a result, patients felt unheard, leading some to avoid seeking healthcare altogether. “….when you go to hospitals and when you see a surgeon, you are like in, few questions then you are out…. You can't really go into depth of what you need…. there's not enough time… you end up rushing an appointment, walking out with loads of questions” (Male, White British, 75, Bradford) “I would have appreciated a more comprehensive discussion about the post operative risks, benefits, and expected outcomes of the surgery” (Male, Bangladeshi, 92, Bradford). “I don’t go to the doctors… My father wouldn’t go to the doctors already because of his (poor consultation) experiences” (Female, Roma-Czech, 35, Bradford). Limited access to consultations, and a meaningful interaction, often led patients to seek answers about their health conditions through web searches, specialists in their home country, or family and friends. “Sometimes my son or daughter finds information (about my surgery) from the internet and whatever information is found, they share it with me” (Female, Asian-Indian, 86, Bristol). “… I asked my mum in Iran to go to several urologists and ask their opinions (about surgery) ” (Male, Middle Eastern, 38, Bristol). Older participants felt that healthcare staff view them as weaker, or not worth making an effort for compared to younger patients, with some elderly patients from ethnic minority backgrounds reporting a fear of neglect or even euthanasia. “…. people (clinical team) consider you perhaps too old to have things done?” (Female, White British, 76, Bristol). “…. there’s also a prevailing fear among some that elderly patients might be euthanised by doctors … considering them as burden on the government” (Male, Asian Pakistani, 91, Bradford). Some older participants from ethnic minority backgrounds expressed a lack of trust in the UK healthcare system and chose to avoid surgical treatment locally, instead opting to travel to their countries of origin for treatment. “….people who had undergone the (eye) surgery here (in UK) are still in pain, they can't see properly. Unlike them, I was back to my workplace the very next day of my surgery (that took place in Pakistan). How can you possibly convince me to get surgery in England? I don't know why they call them advanced in the medical field” (Male, Asian Pakistani, 91, Bradford). These perceptions of age discrimination impact the motivation of elderly patients and those facing intersectional inequalities to engage in the SDM process. Perception that ‘ doctor knows best ’ Some participants, particularly those from Asian backgrounds, had an expectation that the clinical team should be responsible for deciding whether surgery is the best option for the patient. For their surgery, some participants expected strong directions instead from the clinical team emphasising: ‘ Doctor knows best. In Asian heads, doctors are God. You do not ask them questions” (Female, Asian Pakistani, 70, Bradford). “She (my mother) was not born here, she is of an age where you are just happy, doctors know what they’re doing, and whatever decisions they are making, they must be right” (Male, Mixed Asian, 55–60, Bristol). This attitude reduces the acceptability of engaging in surgical SDM. Patients’ views on who should support surgical decision-making across the care pathway The participants expressed varying preferences regarding the most appropriate HCP they wanted to discuss their surgical treatment with. Participants discussed the involvement of various healthcare professionals in their surgical care and shared reflections on who they believed should support decision-making. Their views were shaped by their experiences, expectations, and perceptions of different roles within the healthcare system. Rather than expressing a clear preference for a single professional, participants described seeking different kinds of information, reassurance, or guidance from different people involved in their care. Many participants valued the surgeon’s technical knowledge and experience, and expected them to provide detailed information about the procedure itself. “A surgeon, although busy, are the best person to give you all the information because he is the one who will perform the surgery and he has done it so many times” (Female, Black Caribbean, > 50, Bristol). However, other participants valued nurses for their communication skills, compassion,, and availability to bridge communication gaps between patients and surgeons especially when interactions with surgeons felt rushed or unclear. “…. (doctors are) a bit overwhelmed and nurses are very good communicators.... They are often great at smoothing things over when a surgeon is brusque in consultation.... and you trust a nurse, don’t you?” (Female, White British, 76, Bristol). Some participants viewed their general practitioner (GP) as a key figure in supporting the surgical decision making process, particularly because of their long-standing relationship and knowledge of their medical history and life circumstances. “Because your GP knows your medical history, he is the best person to help you decide for the surgery” (Male, Pakistani, 85, Bradford). For conversations related to SDM, participants emphasised the importance of speaking with someone they could trust. Although the preference for a person to discuss their surgery with varied, most participants highlighted the importance of compassion, trust, and sufficient time for consultation. Theme 2: Capacity of patients to engage in SDM Most of the elderly participants belonging to ethnic minorities believed that digital exclusion, language barriers and educational inequalities were all found to restrict their capacity to engage in high quality SDM. Digital exclusion The narratives across our participant group revealed that digital exclusion is a significant barrier to participating in SDM, particularly among the elderly population.. Many participants reported difficulties using digital devices or accessing information online. These participants reported finding it hard to follow any links or absorb information shared digitally, often relying on family members for support. “… as I can't read the message (on phone), my son or daughter in law tell me about that. But sometimes when they are not around, the message remains unread or unnoticed. I can't do anything in this case” (Female, Pakistani 81, Bradford). Particularly from ethnic minorities, most of the elderly participants had never engaged with the internet, did not own a smartphone or have an email address. In several cases, email accounts registered in their names were typically set up and managed by their children. “ I do not have any email account, neither do the Asian ladies I know ” (Female, Asian Pakistani, 78, Bradford). White British elderly participants also described themselves as ‘ old-fashioned ’ or ‘ conventional ’ in their attitudes as they prefer face-to-face meetings or postal correspondence over the use of digital technologies as means of healthcare-related communication. Thus, elderly patients are likely the least capable and motivated to engage in digital SDM processes. Language Barrier Some participants highlighted their disadvantaged position due to language barriers. Use of complicated language and medical terminologies make comprehension of information particularly challenging for non-English speakers and hinders ability to engage in high-quality SDM. “Somebody who can speak the language well, aware of their rights, and is able to express their needs has a completely different experience (of SDM) than someone without the language skills” (Female, Asian Pakistani, 39, Bradford). “ (Anaesthesia) Yeah, difficult word. I can’t pronounce it either.” (Male, Middle Eastern, 38, Bristol). Participants who had experience of using interpreters, expressed dissatisfaction with how interpreters support SDM. It is perceived that interpreters do not fully convey the entire conversation between patients and doctors. Some participants believe that sometimes interpreters are not native speakers, and they alter the meaning of the conversation while translating which makes the SDM process frustrating and less meaningful for patients. “My mum cannot understand English and needs interpreter….. some of the information that interpreter gave to her (mum), I knew was wrong. The details told were not related to her.” (Female, Asian Pakistani, 34, Bradford). Educational Inequalities Participants emphasised that patients with limited formal education were in a disadvantaged position because they lack skills and capacity to actively engage in effective communication during SDM. “just having English language certificate does not serve the purpose. I think only university graduates and learned people can speak well and communicate their issues in a better way.” (Male, Asian Pakistani, 91, Bradford). In part due to language barriers and educational inequalities, participants often reported that a family member would play more of an active role in deciding their treatment option. I explain just the important bits to my mum and not everything told by the doctor (which I think is irrelevant), otherwise she gets confused.” (Female, Asian Pakistani, 34, Bradford). “My elder son was of the view that surgery was a better option. He reached this conclusion after having a discussion with the doctor so I happily agreed” (Male, Asian Pakistani, 85, Bradford). These data suggests that elderly patients from ethnic minorities are often passive recipients of healthcare. Theme 3: Feeding back of SDM experience Participants shared their views on the importance and practicalities of real-time feeding back of SDM experience. Most of the participants valued the idea of real-time feeding back as a way to improve care and SDM. Participants commonly identified the need for clear communication about the objectives, nature, and significance to make feeding back acceptable and meaningful for patients. However, a few were sceptical about whether their feedback would lead to meaningful change or raised worries about privacy and data use, highlighting the importance of addressing these concerns in the design of future systems. Mode of feeding back Participants largely expressed scepticism on the utility of surveys to provide feedback on their SDM experience, viewing them as time-consuming and ineffective. “these surveys are useless….. it’s been a waste of my time doing it, and a waste of their time sending it.” (Female, White British, 73, Bristol). Patients also expressed concerns about potential misuse of the data, such as it being “sold onto a pharma or insurance company” (Male, White British, 69, Bristol) that might discourage them to provide feedback on their SDM experience via a survey. Participants, particularly those experiencing intersectional inequalities in terms of age, ethnic origin and digital connectedness, largely discouraged the option of an online survey to share their experience of surgical SDM. Reason for this include many elderly patients not having or not knowing how to use email, and limited digital competency (see theme 2). “….my stepson has created an email address for me…@gmail.com . I receive emails, but I don't know how to open the inbox and how to respond to those emails” (Male, Asian Pakistani, 91, Bradford). “… I wouldn’t be very keen because I get muddled up on different sites” (Female, White British, 76, Bristol). Others mentioned that online surveys are often filled in by a family member on the patients’ behalf, often without consulting the patient. “….I receive surveys … but I (next of kin) could not fill them as I don't have time to ask her (my mom) about her opinions to fill it” (Female, Asian Pakistani, 34, Bradford). Some participants therefore considered online surveys as an unreliable method as responses are not always reflective of their experiences. Some participants also shared that they avoid opening any survey links sent via SMS due to a fear of scams. “… first thing we said to mum and dad is that if you get something that has a link in it you don’t press on it, it could be a virus and it could damage your phone and that kind of thing, or it could steal your information that you have on your phone” (Female, British Asian, 39, Bradford). Participants who were not digitally excluded were typically also resistant to returning surveys, due to feeling overwhelmed by the constant barrage of online surveys. Communicating feedback to the clinical team The participants preferred for an independent (i.e. non-clinical) team member to carry out the survey with them. Any managerial, research team or intermediary can be involved in collecting feedback and pass on the results to clinical team. “I think people would welcome that if they know that someone will advocate for them, they don’t have to go and say it themselves. If someone is going to pass on that information in the hope of improving their care for any future patients, I imagine people would be all right with that. I think I would be if someone else was saying it for me on my behalf, it makes it a bit easier.” (Female, White British, 42, Bradford). Feeding back of patients’ individual survey responses (anonymised or non-anonymised) to the hospital was considered a prerequisite to improving SDM in future. “ …. I think it is very important … mistakes do happen and only by reporting can be avoided [in future SDM for patient]” (Male, Asian Pakistani, 85, Bradford). However, some participants felt that survey responses should be shared anonymously with the clinical team. Some participants preferred keeping their SDM experience anonymous as they feared repercussions or unfair treatment in future if they provided negative feedback. “….if I have had a negative experience I will be scared to share it, especially if I am in and out of hospital, the healthcare professional might say, oh she is a problem” (Female, Afro-Caribbean, 54, Leeds). Participants suggested that sharing patients feedback with the clinical team should be optional, if it is to be passed on without confidentiality. Summary of key recommendations on making SDM accessible and acceptable for underserved groups Building on findings from across the themes, we have crafted several key recommendations from participants’ insights for improving SDM for underserved groups. See Table 2 for an outline of these recommendations, including key illustrative quotes. These recommendations are presented in two sets: (1) recommendations to strengthen the quality and inclusivity of surgical SDM, and (2) recommendations on how to design a feedback system that is acceptable and meaningful for underserved groups. Table 2 Key recommendations from participants to improve surgical shared decision making and feedback systems Recommendations to strengthen good quality SDM Recommendation Description Quotes Accessible and effective communication Trustworthiness and compassion demonstrated by HCPs are essential pre-requisite for high quality SDM “before the (SDM) conversation, a rapport should be developed between the patient and someone that they can talk to…. to make patients feel comfortable in their discussions” (Male, Mixed Asian, 55–60, Bristol). Involve nurses in surgical SDM as patients feel they exhibit strong communication skills and have time available for engaging in longer conversations. “…. (doctors are) a bit overwhelmed and nurses are very good communicators..... they’re just very chatty people... a surgeon disappears after one consultation, whereas the nurses in the ward treat you and talk to you all the time...you trust a nurse, they are often very good.” (Female, White British, 76, Bristol). Involve GPs in surgical SDM as they are aware of patients’ health history, and their life circumstances. “…. because your GP knows your medical history. If he recommends the surgery considering your medical history and your present condition, the patient should listen to him” (Male, Asian Pakistani, 85, Bradford). Role of family and friends in SDM Give patients an opportunity to discuss their treatment options with family and friends “Patients who are mentally incapable of making that decision need support from the next of kin.” (Female, British Asian, 39, Bradford). Follow-up SDM consultations Offer a follow-up appointment to give patients time to reflect on information, involve family or support persons, and prepare meaningful questions “When you come back (for subsequent appointment), you bring one or two colleagues or friends, and if not friends, people you think can ask the necessary questions.” (Male, Black African, 72, Bristol). Set up a dedicated helpline for patient queries Establish a specific hotline where patient can ask questions, clarify information and discuss any concerns in the process of deciding for surgery or waiting to undergo surgery “…. I just don’t know who to ask or what number to ring, I just want some answers really [while I am waiting for my surgery to happen].” (Female, White British, 42, Bradford). Role of community organisations Enlist community organisations to support surgical patients, especially non-English speakers, by providing about the SDM process and available services, offering translation or for providing emotional support. “….[to support patients in SDM] Community centre is the best option so far as Asian ladies gather there. These centres can be used for communication purposes and can resolve any ambiguity in the SDM process.” (Female, Asian Pakistani, 78, Bradford). Role of patient forums Utilise patient forums to offer a supportive network during SDM. It will provide existing and past patients an opportunity to share their health condition, treatment options given and chosen and overall lived experience with each other. “….Consulting with previous patients would be of great help before making any decisions, as they have firsthand experience with the entire process.” (Male, Asian Pakistani, 91, Bradford). Recommendations on making a SDM feedback system acceptable and meaningful Involve a neutral team in feeding back SDM experience to the clinical team Involving any managerial or research team, or another neutral intermediary to relay patient’s feedback to the clinical team would avoid fear of unfair treatment in subsequent encounters with the clinical team if the patients voice dissatisfaction. “…people would welcome that if they know that someone will advocate for them, they don’t have to go and say it themselves.” (Female, White British, 42, Bradford). “… it could be a nurse from a different team, but there should be a level of independence on that. ” (Female, British Asian, 35–40, Bradford). “…the manager should record and handle answers of patients responsibly ensuring confidentiality” (Female, Afro-Caribbean, 54, Leeds). Effectively communicate the 3 Ps (purpose, process and practicality) of feeding back system Utilise effective and clear communication from the clinical team about the three P’s including purpose, process, and practicality of SDM monitoring to ensure the acceptability and impact of real-time monitoring. Ensure that any concerns about any potential data misuse are addressed. “…. (feeding back the patients with) what changes have been made because of people’s responses, feeling like they have been listened to (will encourage them to fill).” (Female, White British, 42, Bradford). “It's their responsibility to educate me (on the process) otherwise I will be reluctant to share my experience.” (Female, Afro-Caribbean, 54, Leeds). “…. (reassure the patient) it’s not going to be sold onto a pharma company or insurance company. It’s going to be used for your own healthcare” (Male, White British, 69, Bristol). Provide options for face-to-face and telephone conversations Participants largely preferred verbal conversations for any monitoring of patients’ SDM experience (with or without an interpreter) emphasising this mechanism tends to ensure inclusivity, gives patients an opportunity to ask questions and add details not otherwise focus of the survey. “…. verbal face to face medium is easier for discussion and understanding for most of the patients ” (Female, Asian-Pakistani, 78, Bradford). “If you sit with someone face to face, with the interpreter there, the whole conversation just opens up. People will give you more than a tick-box answer… they might even tell you their whole story. That’s when you really understand” (Female, Roma-Czech, 35, Bradford). Preference for easy and short surveys A short, simple survey is easier for patients to complete. Complex questions should be avoided to ensure patients understand and effectively respond to the questions. “it’s better not to have formal questions in survey. Make it friendly for the patient.” (Male, Middle Eastern, 38, Bristol). “it is really important to keep the survey as short as possible, otherwise it's barrier to patients actually doing it or completing it.” (Male, British Asian, 41, Bristol). Multilingual reporting for inclusivity Provide the survey in patients’ preferred language to ensure patients can effectively share their SDM experience. Equally, hospitals could provide support staff to help patients with filling out the surveys in the clinical setting. “…. survey should be carried out in different languages […]otherwise it misses out the very population whom it intends to improve decision making for.” (Female, Asian Pakistani, 70, Bradford). “…. interpreters should be provided to patients to fill in a survey” (Female, Black African, Bristol). Consider the timing of surveys The timing of the survey should be carefully chosen to avoid overwhelming patients immediately after the consultation while ensuring it is not delayed to the point where they have forgotten their experience. “conversation should be taking place fairly quickly otherwise patients may forget about how did everything (SDM process) go” (Male, Mixed Asian, 55–60, Bristol). 4. Discussion This qualitative study explored the views of underserved groups to inform the development of a decision support intervention to improve surgical SDM. The findings highlight a complex interplay of cultural, structural, and systemic factors that impede effective SDM for underserved groups. The work supports and extends existing research showing that SDM processes often exclude underserved populations. It further highlights the need for SDM to consider the needs of underserved populations and adapt methods to be more inclusive. Consistent with previous research [ 36 ], we found wide variation in how patients engaged with SDM, shaped by a combination of structural, cultural and inter-personal factors. Several participants exhibit discomfort in asserting their views due to low confidence, language barriers, digital exclusion, and uncertainty about their role in clinical conversations. Time-constrained consultations and a perceived need to be seen as ‘good patients’ further discouraged active participation in discussions about surgical treatment [ 37 ]. While these patterns were most pronounced among older adults and South Asian participants, they appeared across different backgrounds and often reflected the absence of appropriate support. Many participants did not recognise the value of their own input, and viewing HCPs as better equipped to make decisions on their behalf [ 36 , 38 ]. These findings align with distinctions in the existing literature between ‘mandatory autonomy’, where all patients are expected to participate regardless of context, and ‘optional autonomy’, which recognises that people differ in their readiness and ability to engage [ 39 , 40 ]. Many participants in our study felt unable, rather than unwilling, to participate in decisions about surgical treatment [ 41 ]. Their accounts point to the need for sufficient consultation time, accessible communication, strong patient-provider relationships, and culturally responsive care that help patients participate in ways that match their circumstances and needs [ 20 , 39 ]. The desire for culturally sensitive support was also reflected in patients’ preferences for the involvement of community teams, non clinical hospital staff and community organistsations during SDM. This desire reflects the importance of embedding decision-making processes within trusted spaces and support systems, particularly for those facing intersecting barriers. Incorporating culturally informed communication, community-based and extended support networks, and personalised guidance can improve the quality and relevance of SDM for underserved patients [ 42 ]. Although digital tools such as patient-reported outcome measures (PROMs) are increasingly promoted for improving patient engagement and accountability [ 43 – 44 ], our findings challenge their assumed accessibility and appropriateness. These tools are not always accepted or used by patients who are already limited in their digital engagement and capability [ 45 ]. Participants expressed concerns around digital literacy, data privacy, and the impersonal nature of online platforms. These views contrast with studies suggesting PROMs enable real-time patient feedback and support service improvement [ 46 , 47 ], and instead aligns with critiques that digital innovations may worsen disparities when they are not adapted to the needs of disadvantaged groups [ 22 , 48 ]. By identifying specific, context-sensitive strategies, such as involving non-clinical staff, leveraging trusted community organisations, using face-to-face verbal communication, this study provides practical guidance for future interventions using feeding back systems to make SDM inclusive and responsive [ 49 ]. Using patient feedback to actively inform service improvement and establishing visible and accountable feedback loops can strengthen patients trust in healthcare and demonstrate that patient voices shape care in tangible ways. This approach reflects the aims of the ALPACA study and aligns with wider literature on structural inequalities in healthcare [ 50 ] Our findings resonate with this literature, reinforcing the importance of including diverse voices in shaping healthcare policy, ensuring that policies address structural inequalities and reflect the needs of all communities. Implications for future research and practice By establishing novel, community-informed solutions to promote equity and inclusion in surgical SDM, our findings have direct implications for the design of inclusive SDM interventions and patient feedback systems. They underline the critical importance of trust, cultural sensitivity, and personalised engagement in facilitating SDM among underserved groups, and highlight the need for low-tech, linguistically accessible channels for communication and feedback, which challenge the prevailing reliance on digital mechanisms. Participants’ nuanced views on who should deliver SDM and receive feedback underscore the importance of flexibility and tailoring in intervention design. The recommendations generated through this work can be directly applied to the co-development of inclusive decision support interventions, as planned in the next phase of the ALPACA study [ 24 ]. Our findings are also relevant for health policymakers and service providers seeking to operationalise the NICE SDM guidelines in a manner that is genuinely inclusive. Future research should test and refine the recommendations identified in this study, and evaluate the impact of tailored, inclusive SDM interventions on decision quality, patient satisfaction, and health equity. Strengths and limitations The strength of this research lies in its robust qualitative methods, which explored the perspectives of ethnically, culturally, linguistically, and socio-economically diverse communities. Conducting interviews in participants’ preferred languages (including Urdu and Punjabi), in familiar community settings, and across two demographically distinct UK cities, allowed the researchers to access candid, contextually rich accounts. Through extended engagement and in-depth and multilingual discussions, this study has generated findings grounded in the experiences of patients from underserved groups. A limitation of the study is that the insights are grounded in the specific settings of Yorkshire and Humber (primarily Bradford), and Bristol. As such, applicability to other NHS contexts may vary depending on respective service delivery models, population demographics, and organisational priorities. The credibility and relevance of qualitative findings depend on clear contextualisation and theoretical transparency [ 51 ], both of which we have sought to provide to support decisions about transferability. Additionally, the depth of insight afforded by purposive sampling, reflexive thematic analysis, and patient and public involvement throughout the study adds to the rigour and trustworthiness of our findings. 5. Conclusion This qualitative study explored the experiences and attitudes of underserved groups towards SDM. The findings reveal that SDM processes as currently delivered inadequately address the intersectional barriers experienced by underserved groups. Participants identified the need for feeding back of SDM experience as a potentially valuable mechanism to promote accountability and foster improvements in surgical communication. However, they also emphasised that for such systems to be inclusive and meaningful, they must be sensitive to cultural norms, digital exclusion, educational inequalities, language barriers, and challenges related to comprehension. Without these elements, any intervention to improve SDM is unlikely to reach its intended outcomes and runs the risk of reproducing inherent power structures, silencing already marginalised voices. Abbreviations COREQ Consolidated criteria for Reporting Qualitative research GRIPP Guidance for Reporting Involvement of Patients and the Public HCP Health Care Professional NHS National Health Service NICE National Institute for Health and Care Excellence PAG Patient Advisory Group PROMs Patient Reported Outcome Measures SDM Shared Decision Making Declarations Funding declaration This study is supported through an National Institute for Health and Care Research (NIHR), Programme Development Grant, Award ID: NIHR205174. This study is led and sponsored by the University of Bristol and hosted by NHS North Bristol Trust. Author’s declaration of interest and disclaimer: The views expressed are those of the authors and not necessarily those of the NIHR or NHS, England. We confirm that this manuscript is original, has not been published previously, and is not under consideration for publication elsewhere. All authors have approved the final version of the manuscript. We also confirm that there is no overlapping information with other publications and no potential conflicts of interest to declare. The authors declare that they have no competing interests. Ethics approval and consent to participate This research is designed and conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. The study received ethics approval from the NHS Health Research Authority North West-Liverpool Central Research Ethics Committee (Reference: 21/PR/0345). We gave verbal and written information about the study aims and participants’ involvement prior to consenting the participants. Participants provided electronic consent through a link to a secure data management platform (RedCap Version 11.1.18) before any study activity commenced. We presented a printed copy of the consent form to participants who were unable to consent digitally or who preferred the paper-based method. Participants were assured of their confidentiality and anonymity of their information and identity and were assured of their right to withdraw from the study at any time. Authors’ contributions ZH wrote the first draft and had the primary responsibility for the final content of the manuscript. ZH, CH, JH and AM co-wrote the final manuscript and designed analytical strategy. All the authors commented on the manuscript and revised it critically and approved the final manuscript. AM and JB conceptualised the study. ZH and CH collected the data. ZH, CH, JH, AM, VS conducted the formal analysis. JH created the study design. ZH and CH performed project administration. All the authors ZH, CH, JH, AM, LR, KA, CC, HB, VS, JB validated the study. 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K.","lastName":"McNAIR","suffix":""}],"badges":[],"createdAt":"2025-09-03 10:08:26","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7525686/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7525686/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":94174053,"identity":"b85e0c64-5e3d-4e01-8110-79648c96aaa2","added_by":"auto","created_at":"2025-10-23 08:08:04","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":102506,"visible":true,"origin":"","legend":"","description":"","filename":"QualPaperALPACA.docx","url":"https://assets-eu.researchsquare.com/files/rs-7525686/v1/3f522c39d768523c3efd547e.docx"},{"id":94175060,"identity":"fe25c567-810b-4f2f-a099-dedd4a1286f5","added_by":"auto","created_at":"2025-10-23 08:16:04","extension":"json","order_by":1,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":13161,"visible":true,"origin":"","legend":"","description":"","filename":"cb35f16a3fb7447baf83bd85e33aba39.json","url":"https://assets-eu.researchsquare.com/files/rs-7525686/v1/bb8404e59baa265048af00e4.json"},{"id":94174054,"identity":"8f3d032d-5164-46e7-9bc8-6b6f8b374503","added_by":"auto","created_at":"2025-10-23 08:08:05","extension":"xml","order_by":2,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":155875,"visible":true,"origin":"","legend":"","description":"","filename":"cb35f16a3fb7447baf83bd85e33aba391enriched.xml","url":"https://assets-eu.researchsquare.com/files/rs-7525686/v1/57fd8d87a1f45769c21bed16.xml"},{"id":94174057,"identity":"76ff5a07-43bd-49ed-a890-f1023a27bb64","added_by":"auto","created_at":"2025-10-23 08:08:05","extension":"xml","order_by":3,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":146664,"visible":true,"origin":"","legend":"","description":"","filename":"cb35f16a3fb7447baf83bd85e33aba391structuring.xml","url":"https://assets-eu.researchsquare.com/files/rs-7525686/v1/3ad8dda93d56c6b018c58d5b.xml"},{"id":94174055,"identity":"236675f9-caa1-486e-87bb-56555b22f7bf","added_by":"auto","created_at":"2025-10-23 08:08:05","extension":"html","order_by":4,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":168447,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-7525686/v1/9fffcff30681207a62ccc50b.html"},{"id":94176190,"identity":"0ff288c8-f5b9-4268-93d7-3d2c148cb92c","added_by":"auto","created_at":"2025-10-23 08:24:05","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1057729,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7525686/v1/a27e61c6-add3-4ad0-a04d-f586d18531fe.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003e“Breaking the Silence”: A Qualitative Study Exploring How to Improve Surgical Shared Decision Making for Underserved Groups\u003c/p\u003e","fulltext":[{"header":"1. Background","content":"\u003cp\u003eShared decision-making (SDM) is a collaborative process in which patients work together with healthcare professionals to make informed decisions between healthcare options [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. A successful SDM process involves discussion of accurate information about all available options and their potential outcomes, sharing reasoning and preferences for each option, and agreeing on a treatment plan considering the individual needs, values, beliefs, and preferences of the patient and their family [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Both global and UK policies [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e] along with professional and regulatory guidelines [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e] advocate for SDM across all healthcare settings. National Institute for Health and Care Excellence (NICE) guidelines emphasise the need to make shared decision-making part of everyday care in all healthcare settings [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. This approach is crucial for the 312.9\u0026nbsp;million patients globally, including approximately 5.1\u0026nbsp;million people in the UK, undergoing surgery annually [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e], as surgical interventions are often immediate and irreversible, unlike many other forms of clinical care\u003c/p\u003e\u003cp\u003eEvidence shows that effective SDM improves patients\u0026rsquo; understanding of their options, increases satisfaction with their care, reduces decisional conflict, and supports a process that aligns with their preferences and values [\u003cspan additionalcitationids=\"CR10\" citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. SDM processes can lead to medical adherence [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e], better treatment decisions [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e], and reduced use of health services for high risk and low value procedures [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. High-quality SDM may also help manage treatment harms by setting more realistic expectations [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] and improving self-management [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. However, despite the benefits of SDM, a systematic review of 22 surgical studies revealed that only 36% of 13,176 patients felt their consultations were shared [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Reasons for poor SDM can include surgeons underestimating patients\u0026rsquo; information needs [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e] and surgical risks going undisclosed [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e], leaving patients feeling uninformed [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eIndividuals from underserved groups, such as older adults, and those from ethnic minority and socioeconomically deprived backgrounds, are disproportionally affected by poor SDM [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. Studies show that those who experience lower self-efficacy and limited health literacy [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e] are more vulnerable in patient-provider relationships [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Without specific consideration of the needs of underserved groups, SDM interventions may serve to perpetuate existing health inequalities. Tailored approaches to support patients from marginalised groups in effectively engaging in SDM requires a deep understanding of their experiences and perspectives on how to improve SDM. However, there is a notable lack of published evidence on the views, needs, and preferences of patients in the UK from underserved groups to engage proactively with surgical care pathways [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e\u003cp\u003e The present study aims to explore the perspectives of patients from underserved communities towards making treatment decisions with surgical teams and their engagement with the care pathway. The findings from this study can inform future development and tailoring of SDM interventions to ensure inclusivity and to avoid widening health inequalities.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003e2.1. Study context\u003c/h2\u003e\u003cp\u003eThis qualitative study is part of a larger programme of work which seeks to co-develop a decision support intervention that uses a system for real-time monitoring and feedback with the aim to improve shared decision making for surgical patients, the ALPACA study [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. There are three phases with the following objectives: Phase 1: assess the feasibility, usability, and the views of patient and health professionals on implementing an automated system to monitor the SDM process for surgery in real time. Phase 2: co-develop and refine the intervention with patients and professionals to understand how the intervention works, for whom and in what context using findings from Phase 1. Phase 3: evaluate the effectiveness, cost-effectiveness and implementation of the intervention to improve patient and health service outcomes in the English National Health Service (NHS) [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. The present study is part of qualitative research within Phase 1 with an aim to understand views of underserved groups to inform the design of a decision support intervention that uses real-time feedback from patients on their experiences of the SDM process. The intervention will comprise (1) efficient, real-time evaluation of patient experiences of SDM at scale, (2) prompt feedback of individual patient-reported SDM experiences to care teams before surgery, and (3) actions that support meaningful changes in how patients and professionals make decisions about surgery, both individually and collaboratively.\u003c/p\u003e\u003cp\u003eCreating methods for efficient evaluation of SDM will enhance the consistency and relevance of SDM outcome measurement. The findings from this qualitative research are also being used to co-develop an initial programme theory informing phase 2.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e\u003ch2\u003e2.2. Patient and public involvement\u003c/h2\u003e\u003cp\u003eThe need for this research, centred on understanding the experiences and attitudes of underserved groups towards SDM, was born out of consultations with PPI stakeholders who identified inclusivity as a key uncertainty in the ALPACA project. A dedicated patient advisory group (PAG) of ALPACA study consisting of members of the public from diverse socio-economic and ethnic backgrounds and with experience of surgical SDM, supported development of the research question, the design and piloting of the interview topic guide, data analysis and interpretation of study findings. Patient advisors made a regular and significant contribution in interpreting the interview data by reading the transcripts and sharing their reflections with the researchers. A patient/public co-author has reviewed and commented on a draft of this manuscript. GRIPP2 reporting [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e] is included in appendix 1, to provide details of PPIE activities.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\u003ch2\u003e2.3. Study design\u003c/h2\u003e\u003cp\u003eThe study used a qualitative research design to capture rich and complex narratives on SDM and understand SDM through participants\u0026rsquo; lenses [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. Presentation of recruitment, data collection and analysis are aligned with the consolidated criteria for reporting qualitative research (COREQ) [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]; see appendix 2.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\u003ch2\u003e2.4. Setting\u003c/h2\u003e\u003cp\u003e We recruited participants from the community from two regions of England; Yorkshire and Humber (primarily Bradford) and Bristol. A city located in the north of England, UK, Bradford is ethnically, culturally and linguistically diverse, with high levels of deprivation. The Index of Multiple Deprivation ranks Bradford as the 13th most deprived local authority in England (out of 317). It is also the 5th most income deprived and the 6th most employment deprived in England [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. In the 2021 Census, 57% of the population identified as White British and 32% identified as Asian or Asian British, with the remainder of the population belonging to other ethnic groups, including Mixed or Multiple ethnic groups: Black, Black British, Caribbean, or African, and Roma [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. Recruitment was primarily conducted in Bradford; however, to ensure diversity in the sample, additional participants were recruited from deprived neighbourhoods in the wider Yorkshire and Humber region, including East Leeds and Hull. Bristol, by contrast, is ethnically less diverse than Bradford, but it contains several pockets of deprivation.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e\u003ch2\u003e2.5. Participants\u003c/h2\u003e\u003cp\u003e\u003cb\u003eSampling\u003c/b\u003e\u003c/p\u003e\u003cp\u003ePurposive sampling was employed, targeting individuals experiencing intersectional inequalities in terms of older age, ethnicity, and socio-economic status. This approach, commonly used in qualitative health research to identify information-rich cases [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e] allowed us to recruit participants with diverse backgrounds, knowledge and experiences relevant to the study aim [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. We sampled participants to include those with language and communication barriers, the digitally excluded, and recent migrant and asylum seekers. Sociodemographic data was collected from participants following recruitment (see Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e) which aided determination of representation of underserved groups. We reviewed participant characteristics as recruitment progressed with a view to adjusting recruitment efforts to sample those underrepresented, to ensure maximum variation in socio-demographic characteristics.\u003c/p\u003e\u003cp\u003e\u003cb\u003eRecruitment\u003c/b\u003e\u003c/p\u003e\u003cp\u003e We approached and identified participants through community organisations, community centres, public libraries, public events, patient and public advisory groups, and through public facing research recruitment information sheets circulated digitally and physically. We approached most of the participants face-to-face for the initial discussions. These discussions often comprised multiple meetings. If participants preferred, we followed up with them by telephone to answer additional questions, confirm consent, or arrange an interview. We aimed to recruit 30\u0026ndash;40 participants. We stopped recruiting new participants once no new insights were emerging, and the sample held sufficient diversity to represent individuals with protected characteristics and intersecting inequalities, such as ethnicity, age, and socio-economic disadvantage, and relevance in relation to the study aims. This approach aligns with the concept of information power, whereby the adequacy of the sample is determined not solely by size, but by the richness and applicability of the data collected [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e].\u003c/p\u003e\u003cp\u003e We gave verbal and written information about the study aims and participants\u0026rsquo; involvement prior to consenting the participants. Participants provided electronic consent through a link to a secure data management platform (RedCap Version 11.1.18) before any study activity commenced. We presented a printed copy of the consent form to participants who were unable to consent digitally or who preferred the paper-based method. Participants were assured of their confidentiality and anonymity of their information and identity and were assured of their right to withdraw from the study at any time.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003e2.6. Data collection\u003c/h2\u003e\u003cp\u003e\u003cb\u003eSocio-demographic data\u003c/b\u003e\u003c/p\u003e\u003cp\u003eParticipants provided information on their socio-demographic details including sex, age range, ethnicity, highest level of education, employment, and health and disability status. This information was collected through a researcher-administered questionnaire during the interview. The participants had the option to skip any questions they felt uncomfortable answering.\u003c/p\u003e\u003cp\u003e\u003cb\u003eInterviews\u003c/b\u003e\u003c/p\u003e\u003cp\u003eWe conducted in-depth semi-structured interviews with all participants. Topic guide development was informed by the aims and objectives of this research study, intersectionality theory [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e], and the knowledge and experience of team members with expertise in SDM. We piloted and refined the topic guide with input from patient advisors prior to commencing data collection. We further refined the topic guide as the interviews took place to accommodate newly emerging themes and to aid comprehensibility of questions. The topic guide explored key themes aligned with the aims of Phase 1 of the ALPACA study (as described in the context), including patients\u0026rsquo; individual experience of SDM, their perspective on the design of real time monitoring and feeding back system to the hospital and the ways to improve SDM (see appendix 3).\u003c/p\u003e\u003cp\u003eTwo researchers (ZH and CH) carried out the interviews. ZH has a background in social sciences with expertise in qualitative research methods. She is a multi-lingual Urdu and Punjabi native speaker, British Pakistani female, and an embedded applied health researcher based at the Bradford Institute for Health Research. CH is a trained and experienced qualitative researcher with a background in social sciences and health services research. She is a female and of White European ethnicity CH currently works as Research Fellow at the University of Bristol. ZH and CH took reflective notes during the interviews to capture relevant contextual information of the participant and the interview experience.\u003c/p\u003e\u003cp\u003e Interviews took place face-to-face, online or over the phone depending on the preference of participant. We conducted face-to-face interviews in various public locations chosen by participants, such as cafes, parks, their homes, or community venues. Interviews were conducted in participants\u0026rsquo; preferred language where possible; we conducted interviews in two foreign languages, Urdu and Punjabi, in addition to English language interviews. We gave a \u0026pound;10 voucher to each participant as recognition of their involvement in the research study.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e\u003ch2\u003e2.7. Analysis\u003c/h2\u003e\u003cp\u003eInterviews were audio-recorded and transcribed verbatim. English language interviews were transcribed by NHS approved transcription services. ZH translated and transcribed Urdu and Punjabi language interviews. Data analysis followed an inductive thematic analysis approach [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. Two researchers [ZH, CH] independently read and re-read transcripts and notes, and generated and assigned codes relevant to excerpts within the transcripts. This process was primarily inductive, with codes developed and iteratively refined through interpretation of the data. However, analysis was also informed by an a priori interest in examining data in relation to the study aims. A proportion of transcripts were double coded by ZH and CH to ensure consistency and to capture the full range of interpretations of the data. This continued until the researchers felt confident that coding adequately represented the data. ZH then applied this coding framework to the full dataset, conducting the coding for all remaining transcripts. The researchers discussed codes and impressions of the data with each other and then with AM, JH, wider multi-disciplinary team members, and the PAG members, and themes were crafted through collating similar codes. Findings were reviewed in iterative rounds of coding and theme identification every 5\u0026ndash;7 transcripts. The researchers also used interviewers\u0026rsquo; reflective notes written during or after the participants\u0026rsquo; interviews to inform analysis and ensure rigour [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e].\u003c/p\u003e\u003c/div\u003e"},{"header":"3. Findings","content":"\u003cp\u003eA total of 34 participants were recruited for interview between October 2023 and July 2024. Two participants withdrew prior to interview, and one withdrew after interview, meaning this study reports on interview data from 31 participants (N\u0026thinsp;=\u0026thinsp;19 Bradford site, N\u0026thinsp;=\u0026thinsp;12 Bristol site). Interviews lasted on average 49 minutes (range: 26\u0026ndash;79 minutes). Of the 31 participants, 21 had direct experience of surgical SDM, five had experience as a next-of-kin related to surgical SDM, and five had direct experience of SDM within a broader healthcare context. A summary of participant characteristics can be found in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eParticipant characteristics (N\u0026thinsp;=\u0026thinsp;31)\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSex;\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e22\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eAge;\u003c/b\u003e mean (range)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e66.5 (25\u0026ndash;92)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eCountry of birth;\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUK\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e11\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePakistan\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKenya\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOther*\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eLanguage spoken at home;\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEnglish\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e10\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUrdu\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePunjabi\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOther**\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEthnicity (self-identified);\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAsian Pakistani\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eWhite British\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBlack African\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOther***\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eReligion;\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eIslam\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e15\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChristianity\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo religion\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAtheist\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHindu\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEducation;\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEducated beyond GCSE-level (or equivalent)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e15\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEducated until GCSE-level (or equivalent)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo formal education\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNot reported\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eIMD decile; mean (range)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1 (most deprived)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e16\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOther****\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eOccupational status;\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eIn employment\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e13\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e11\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNot in employment\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNever been employed\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003ctfoot\u003e\u003ctr\u003e\u003ctd colspan=\"2\"\u003e*Iran, Zimbabwe, Netherlands, Syria, Bangladesh, Czech Republic, India\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd colspan=\"2\"\u003e**Kikuyu, Gujarati, Romani, Pahari-Pothwari, Arabic, Shona, Bengali, Swahili, Hindko, Farsi (Persian), Hindi\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd colspan=\"2\"\u003e***Middle Eastern, Roma-Czech, Afro-Caribbean, Kurd, Asian-Indian, Asian-Bangladeshi, Mixed Asian, British Asian, Black-Caribbean, Mixed\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd colspan=\"2\"\u003e****3, 4, 8, 9, 10 (least deprived), No permanent address\u003c/td\u003e\u003c/tr\u003e\u003c/tfoot\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eOur qualitative analysis is presented according to the three themes developed from the analysis representing the views of participants about surgical pathways and SDM with health professionals. The themes cover a range of factors that shape attitudes towards engaging with care pathways and mechanisms of the SDM process to inform the inclusion of patient feedback about their experience of hospital in future initiatives.\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 1: Perceptions about the NHS and healthcare professionals\u003c/b\u003e\u003c/p\u003e\u003cp\u003eMost participants expressed feelings of neglect and distrust towards the NHS which led to disengagement from the health care system and limited participation in SDM processes. Whilst some individual preferences and cultural beliefs also discouraged active involvement in treatment decisions, participants consistently highlighted trust, empathy, and sufficient time as essential for meaningful engagement in the SDM process.\u003c/p\u003e\u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003eWe are people, not numbers\u003c/span\u003e\u003c/p\u003e\u003cp\u003eMany participants perceived apathy from the NHS toward patients, linking it to long and poorly communicated waiting times for consultations and surgical treatments. The uncertainty surrounding surgery timing left patients feeling abandoned and unsure about their treatment timeline.\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u0026hellip; \u003cem\u003eI wish I did not have that gap of a whole year where they neglected me and forgot about me while I kept on chasing them like crazy\u003c/em\u003e\u0026rdquo; (Female, Kurd, 45, Bradford).\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u0026hellip;\u003cem\u003eI\u0026rsquo;m just a number, so do they really care\u003c/em\u003e\u0026rdquo; (Female, White British, 77, Bradford).\u003c/p\u003e\u003cp\u003eMost participants believed that time constraints led to shorter consultations, hindering meaningful discussions with consultants. This limited patients' opportunities for active involvement in surgical decision-making. As a result, patients felt unheard, leading some to avoid seeking healthcare altogether.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;.when you go to hospitals and when you see a surgeon, you are like in, few questions then you are out\u0026hellip;. You can't really go into depth of what you need\u0026hellip;. there's not enough time\u0026hellip; you end up rushing an appointment, walking out with loads of questions\u0026rdquo;\u003c/em\u003e (Male, White British, 75, Bradford)\u003cem\u003e\u0026ldquo;I would have appreciated a more comprehensive discussion about the post operative risks, benefits, and expected outcomes of the surgery\u0026rdquo;\u003c/em\u003e (Male, Bangladeshi, 92, Bradford).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I don\u0026rsquo;t go to the doctors\u0026hellip; My father wouldn\u0026rsquo;t go to the doctors already because of his (poor consultation) experiences\u0026rdquo;\u003c/em\u003e (Female, Roma-Czech, 35, Bradford).\u003c/p\u003e\u003cp\u003eLimited access to consultations, and a meaningful interaction, often led patients to seek answers about their health conditions through web searches, specialists in their home country, or family and friends.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Sometimes my son or daughter finds information (about my surgery) from the internet and whatever information is found, they share it with me\u0026rdquo;\u003c/em\u003e (Female, Asian-Indian, 86, Bristol).\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u0026hellip; \u003cem\u003eI asked my mum in Iran to go to several urologists and ask their opinions (about surgery)\u003c/em\u003e\u0026rdquo; (Male, Middle Eastern, 38, Bristol).\u003c/p\u003e\u003cp\u003eOlder participants felt that healthcare staff view them as weaker, or not worth making an effort for compared to younger patients, with some elderly patients from ethnic minority backgrounds reporting a fear of neglect or even euthanasia.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. people (clinical team) consider you perhaps too old to have things done?\u0026rdquo;\u003c/em\u003e (Female, White British, 76, Bristol).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. there\u0026rsquo;s also a prevailing fear among some that elderly patients might be euthanised by doctors \u0026hellip; considering them as burden on the government\u0026rdquo;\u003c/em\u003e (Male, Asian Pakistani, 91, Bradford).\u003c/p\u003e\u003cp\u003eSome older participants from ethnic minority backgrounds expressed a lack of trust in the UK healthcare system and chose to avoid surgical treatment locally, instead opting to travel to their countries of origin for treatment.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;.people who had undergone the (eye) surgery here (in UK) are still in pain, they can't see properly. Unlike them, I was back to my workplace the very next day of my surgery (that took place in Pakistan). How can you possibly convince me to get surgery in England? I don't know why they call them advanced in the medical field\u0026rdquo;\u003c/em\u003e (Male, Asian Pakistani, 91, Bradford).\u003c/p\u003e\u003cp\u003eThese perceptions of age discrimination impact the motivation of elderly patients and those facing intersectional inequalities to engage in the SDM process.\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003ePerception that \u0026lsquo;\u003c/span\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003edoctor knows best\u003c/span\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003e\u0026rsquo;\u003c/span\u003e\u003c/p\u003e\u003cp\u003eSome participants, particularly those from Asian backgrounds, had an expectation that the clinical team should be responsible for deciding whether surgery is the best option for the patient. For their surgery, some participants expected strong directions instead from the clinical team emphasising:\u003c/p\u003e\u003cp\u003e\u0026lsquo;\u003cem\u003eDoctor knows best. In Asian heads, doctors are God. You do not ask them questions\u0026rdquo;\u003c/em\u003e (Female, Asian Pakistani, 70, Bradford).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;She (my mother) was not born here, she is of an age where you are just happy, doctors know what they\u0026rsquo;re doing, and whatever decisions they are making, they must be right\u0026rdquo;\u003c/em\u003e (Male, Mixed Asian, 55\u0026ndash;60, Bristol).\u003c/p\u003e\u003cp\u003eThis attitude reduces the acceptability of engaging in surgical SDM.\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003ePatients\u0026rsquo; views on who should support surgical decision-making across the care pathway\u003c/span\u003e\u003c/p\u003e\u003cp\u003e The participants expressed varying preferences regarding the most appropriate HCP they wanted to discuss their surgical treatment with. Participants discussed the involvement of various healthcare professionals in their surgical care and shared reflections on who they believed should support decision-making. Their views were shaped by their experiences, expectations, and perceptions of different roles within the healthcare system. Rather than expressing a clear preference for a single professional, participants described seeking different kinds of information, reassurance, or guidance from different people involved in their care.\u003c/p\u003e\u003cp\u003eMany participants valued the surgeon\u0026rsquo;s technical knowledge and experience, and expected them to provide detailed information about the procedure itself.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;A surgeon, although busy, are the best person to give you all the information because he is the one who will perform the surgery and he has done it so many times\u0026rdquo;\u003c/em\u003e (Female, Black Caribbean, \u0026gt;\u0026thinsp;50, Bristol).\u003c/p\u003e\u003cp\u003e However, other participants valued nurses for their communication skills, compassion,, and availability to bridge communication gaps between patients and surgeons especially when interactions with surgeons felt rushed or unclear.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. (doctors are) a bit overwhelmed and nurses are very good communicators.... They are often great at smoothing things over when a surgeon is brusque in consultation.... and you trust a nurse, don\u0026rsquo;t you?\u0026rdquo;\u003c/em\u003e (Female, White British, 76, Bristol).\u003c/p\u003e\u003cp\u003eSome participants viewed their general practitioner (GP) as a key figure in supporting the surgical decision making process, particularly because of their long-standing relationship and knowledge of their medical history and life circumstances.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Because your GP knows your medical history, he is the best person to help you decide for the surgery\u0026rdquo;\u003c/em\u003e (Male, Pakistani, 85, Bradford).\u003c/p\u003e\u003cp\u003e For conversations related to SDM, participants emphasised the importance of speaking with someone they could trust. Although the preference for a person to discuss their surgery with varied, most participants highlighted the importance of compassion, trust, and sufficient time for consultation.\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 2: Capacity of patients to engage in SDM\u003c/b\u003e\u003c/p\u003e\u003cp\u003eMost of the elderly participants belonging to ethnic minorities believed that digital exclusion, language barriers and educational inequalities were all found to restrict their capacity to engage in high quality SDM.\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eDigital exclusion\u003c/span\u003e\u003c/p\u003e\u003cp\u003eThe narratives across our participant group revealed that digital exclusion is a significant barrier to participating in SDM, particularly among the elderly population.. Many participants reported difficulties using digital devices or accessing information online. These participants reported finding it hard to follow any links or absorb information shared digitally, often relying on family members for support.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip; as I can't read the message (on phone), my son or daughter in law tell me about that. But sometimes when they are not around, the message remains unread or unnoticed. I can't do anything in this case\u0026rdquo;\u003c/em\u003e (Female, Pakistani 81, Bradford).\u003c/p\u003e\u003cp\u003eParticularly from ethnic minorities, most of the elderly participants had never engaged with the internet, did not own a smartphone or have an email address. In several cases, email accounts registered in their names were typically set up and managed by their children.\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eI do not have any email account, neither do the Asian ladies I know\u003c/em\u003e\u0026rdquo; (Female, Asian Pakistani, 78, Bradford).\u003c/p\u003e\u003cp\u003eWhite British elderly participants also described themselves as \u0026lsquo;\u003cem\u003eold-fashioned\u003c/em\u003e\u0026rsquo; or \u0026lsquo;\u003cem\u003econventional\u003c/em\u003e\u0026rsquo; in their attitudes as they prefer face-to-face meetings or postal correspondence over the use of digital technologies as means of healthcare-related communication. Thus, elderly patients are likely the least capable and motivated to engage in digital SDM processes.\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eLanguage Barrier\u003c/span\u003e\u003c/p\u003e\u003cp\u003eSome participants highlighted their disadvantaged position due to language barriers. Use of complicated language and medical terminologies make comprehension of information particularly challenging for non-English speakers and hinders ability to engage in high-quality SDM.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Somebody who can speak the language well, aware of their rights, and is able to express their needs has a completely different experience (of SDM) than someone without the language skills\u0026rdquo;\u003c/em\u003e (Female, Asian Pakistani, 39, Bradford).\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003e(Anaesthesia) Yeah, difficult word. I can\u0026rsquo;t pronounce it either.\u0026rdquo;\u003c/em\u003e (Male, Middle Eastern, 38, Bristol).\u003c/p\u003e\u003cp\u003e Participants who had experience of using interpreters, expressed dissatisfaction with how interpreters support SDM. It is perceived that interpreters do not fully convey the entire conversation between patients and doctors. Some participants believe that sometimes interpreters are not native speakers, and they alter the meaning of the conversation while translating which makes the SDM process frustrating and less meaningful for patients.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;My mum cannot understand English and needs interpreter\u0026hellip;.. some of the information that interpreter gave to her (mum), I knew was wrong. The details told were not related to her.\u0026rdquo;\u003c/em\u003e (Female, Asian Pakistani, 34, Bradford).\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eEducational Inequalities\u003c/span\u003e\u003c/p\u003e\u003cp\u003e Participants emphasised that patients with limited formal education were in a disadvantaged position because they lack skills and capacity to actively engage in effective communication during SDM.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;just having English language certificate does not serve the purpose. I think only university graduates and learned people can speak well and communicate their issues in a better way.\u0026rdquo;\u003c/em\u003e (Male, Asian Pakistani, 91, Bradford).\u003c/p\u003e\u003cp\u003eIn part due to language barriers and educational inequalities, participants often reported that a family member would play more of an active role in deciding their treatment option.\u003c/p\u003e\u003cp\u003e\u003cem\u003eI explain just the important bits to my mum and not everything told by the doctor (which I think is irrelevant), otherwise she gets confused.\u0026rdquo;\u003c/em\u003e (Female, Asian Pakistani, 34, Bradford).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;My elder son was of the view that surgery was a better option. He reached\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003ethis conclusion after having a discussion with the doctor so I happily agreed\u0026rdquo;\u003c/em\u003e (Male, Asian Pakistani, 85, Bradford).\u003c/p\u003e\u003cp\u003eThese data suggests that elderly patients from ethnic minorities are often passive recipients of healthcare.\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 3: Feeding back of SDM experience\u003c/b\u003e\u003c/p\u003e\u003cp\u003eParticipants shared their views on the importance and practicalities of real-time feeding back of SDM experience. Most of the participants valued the idea of real-time feeding back as a way to improve care and SDM. Participants commonly identified the need for clear communication about the objectives, nature, and significance to make feeding back acceptable and meaningful for patients. However, a few were sceptical about whether their feedback would lead to meaningful change or raised worries about privacy and data use, highlighting the importance of addressing these concerns in the design of future systems.\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eMode of feeding back\u003c/span\u003e\u003c/p\u003e\u003cp\u003eParticipants largely expressed scepticism on the utility of surveys to provide feedback on their SDM experience, viewing them as time-consuming and ineffective.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;these surveys are useless\u0026hellip;.. it\u0026rsquo;s been a waste of my time doing it, and a waste of their time sending it.\u0026rdquo;\u003c/em\u003e (Female, White British, 73, Bristol).\u003c/p\u003e\u003cp\u003ePatients also expressed concerns about potential misuse of the data, such as it being \u0026ldquo;sold onto a pharma or insurance company\u0026rdquo; (Male, White British, 69, Bristol) that might discourage them to provide feedback on their SDM experience via a survey.\u003c/p\u003e\u003cp\u003eParticipants, particularly those experiencing intersectional inequalities in terms of age, ethnic origin and digital connectedness, largely discouraged the option of an \u003cem\u003eonline\u003c/em\u003e survey to share their experience of surgical SDM. Reason for this include many elderly patients not having or not knowing how to use email, and limited digital competency (see theme 2).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;.my stepson has created an email address for\u003c/em\u003e \u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003eme\u0026hellip;@gmail.com\u003c/span\u003e. \u003cem\u003eI receive emails, but I don't know how to open the inbox and how to respond to those emails\u0026rdquo;\u003c/em\u003e (Male, Asian Pakistani, 91, Bradford).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip; I wouldn\u0026rsquo;t be very keen because I get muddled up on different sites\u0026rdquo;\u003c/em\u003e (Female, White British, 76, Bristol).\u003c/p\u003e\u003cp\u003eOthers mentioned that online surveys are often filled in by a family member on the patients\u0026rsquo; behalf, often without consulting the patient.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;.I receive surveys \u0026hellip; but I (next of kin) could not fill them as I don't have time to ask her (my mom) about her opinions to fill it\u0026rdquo;\u003c/em\u003e (Female, Asian Pakistani, 34, Bradford).\u003c/p\u003e\u003cp\u003eSome participants therefore considered online surveys as an unreliable method as responses are not always reflective of their experiences. Some participants also shared that they avoid opening any survey links sent via SMS due to a fear of scams.\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u0026hellip; \u003cem\u003efirst thing we said to mum and dad is that if you get something that has a link in it you don\u0026rsquo;t press on it, it could be a virus and it could damage your phone and that kind of thing, or it could steal your information that you have on your phone\u0026rdquo;\u003c/em\u003e (Female, British Asian, 39, Bradford).\u003c/p\u003e\u003cp\u003eParticipants who were not digitally excluded were typically also resistant to returning surveys, due to feeling overwhelmed by the constant barrage of online surveys.\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eCommunicating feedback to the clinical team\u003c/span\u003e\u003c/p\u003e\u003cp\u003eThe participants preferred for an independent (i.e. non-clinical) team member to carry out the survey with them. Any managerial, research team or intermediary can be involved in collecting feedback and pass on the results to clinical team.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I think people would welcome that if they know that someone will advocate for them, they don\u0026rsquo;t have to go and say it themselves. If someone is going to pass on that information in the hope of improving their care for any future patients, I imagine people would be all right with that. I think I would be if someone else was saying it for me on my behalf, it makes it a bit easier.\u0026rdquo;\u003c/em\u003e (Female, White British, 42, Bradford).\u003c/p\u003e\u003cp\u003eFeeding back of patients\u0026rsquo; individual survey responses (anonymised or non-anonymised) to the hospital was considered a prerequisite to improving SDM in future.\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003e\u0026hellip;. I think it is very important \u0026hellip; mistakes do happen and only by reporting can be avoided [in future SDM for patient]\u0026rdquo;\u003c/em\u003e (Male, Asian Pakistani, 85, Bradford).\u003c/p\u003e\u003cp\u003eHowever, some participants felt that survey responses should be shared anonymously with the clinical team. Some participants preferred keeping their SDM experience anonymous as they feared repercussions or unfair treatment in future if they provided negative feedback.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;.if I have had a negative experience I will be scared to share it, especially if I am in and out of hospital, the healthcare professional might say, oh she is a problem\u0026rdquo;\u003c/em\u003e (Female, Afro-Caribbean, 54, Leeds).\u003c/p\u003e\u003cp\u003eParticipants suggested that sharing patients feedback with the clinical team should be optional, if it is to be passed on without confidentiality.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSummary of key recommendations on making SDM accessible and acceptable for underserved groups\u003c/b\u003e\u003c/p\u003e\u003cp\u003eBuilding on findings from across the themes, we have crafted several key recommendations from participants\u0026rsquo; insights for improving SDM for underserved groups. See Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e for an outline of these recommendations, including key illustrative quotes. These recommendations are presented in two sets: (1) recommendations to strengthen the quality and inclusivity of surgical SDM, and (2) recommendations on how to design a feedback system that is acceptable and meaningful for underserved groups.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eKey recommendations from participants to improve surgical shared decision making and feedback systems\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e\u003cp\u003eRecommendations to strengthen good quality SDM\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRecommendation\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDescription\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eQuotes\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e\u003cp\u003eAccessible and effective communication\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTrustworthiness and compassion demonstrated by HCPs are essential pre-requisite for high quality SDM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;before the (SDM) conversation, a rapport should be developed between the patient and someone that they can talk to\u0026hellip;. to make patients feel comfortable in their discussions\u0026rdquo;\u003c/em\u003e (Male, Mixed Asian, 55\u0026ndash;60, Bristol).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eInvolve nurses in surgical SDM as patients feel they exhibit strong communication skills and have time available for engaging in longer conversations.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. (doctors are) a bit overwhelmed and nurses are very good communicators..... they\u0026rsquo;re just very chatty people... a surgeon disappears after one consultation, whereas the nurses in the ward treat you and talk to you all the time...you trust a nurse, they are often very good.\u0026rdquo;\u003c/em\u003e (Female, White British, 76, Bristol).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eInvolve GPs in surgical SDM as they are aware of patients\u0026rsquo; health history, and their life circumstances.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. because your GP knows your medical history. If he recommends the surgery considering your medical history and your present condition, the patient should listen to him\u0026rdquo;\u003c/em\u003e (Male, Asian Pakistani, 85, Bradford).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRole of family and friends in SDM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eGive patients an opportunity to discuss their treatment options with family and friends\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Patients who are mentally incapable of making that decision need support from the next of kin.\u0026rdquo;\u003c/em\u003e (Female, British Asian, 39, Bradford).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFollow-up SDM consultations\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eOffer a follow-up appointment to give patients time to reflect on information, involve family or support persons, and prepare meaningful questions\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;When you come back (for subsequent appointment), you bring one or two colleagues or friends, and if not friends, people you think can ask the necessary questions.\u0026rdquo;\u003c/em\u003e (Male, Black African, 72, Bristol).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSet up a dedicated helpline for patient queries\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eEstablish a specific hotline where patient can ask questions, clarify information and discuss any concerns in the process of deciding for surgery or waiting to undergo surgery\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. I just don\u0026rsquo;t know who to ask or what number to ring, I just want some answers really [while I am waiting for my surgery to happen].\u0026rdquo;\u003c/em\u003e (Female, White British, 42, Bradford).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRole of community organisations\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eEnlist community organisations to support surgical patients, especially non-English speakers, by providing about the SDM process and available services, offering translation or for providing emotional support.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;.[to support patients in SDM] Community centre is the best option so far as Asian ladies gather there. These centres can be used for communication purposes and can resolve any ambiguity in the SDM process.\u0026rdquo;\u003c/em\u003e (Female, Asian Pakistani, 78, Bradford).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRole of patient forums\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eUtilise patient forums to offer a supportive network during SDM. It will provide existing and past patients an opportunity to share their health condition, treatment options given and chosen and overall lived experience with each other.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;.Consulting with previous patients would be of great help before making any decisions, as they have firsthand experience with the entire process.\u0026rdquo;\u003c/em\u003e (Male, Asian Pakistani, 91, Bradford).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eRecommendations on making a SDM feedback system acceptable and meaningful\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eInvolve a neutral team in feeding back SDM experience to the clinical team\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eInvolving any managerial or research team, or another neutral intermediary to relay patient\u0026rsquo;s feedback to the clinical team would avoid fear of unfair treatment in subsequent encounters with the clinical team if the patients voice dissatisfaction.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;people would welcome that if they know that someone will advocate for them, they don\u0026rsquo;t have to go and say it themselves.\u0026rdquo;\u003c/em\u003e (Female, White British, 42, Bradford).\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u0026hellip;\u003cem\u003eit could be a nurse from a different team, but there should be a level of independence on that.\u003c/em\u003e\u0026rdquo; (Female, British Asian, 35\u0026ndash;40, Bradford).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;the manager should record and handle answers of patients responsibly ensuring confidentiality\u0026rdquo;\u003c/em\u003e (Female, Afro-Caribbean, 54, Leeds).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEffectively communicate the 3 Ps (purpose, process and practicality) of feeding back system\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eUtilise effective and clear communication from the clinical team about the three P\u0026rsquo;s including purpose, process, and practicality of SDM monitoring to ensure the acceptability and impact of real-time monitoring. Ensure that any concerns about any potential data misuse are addressed.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. (feeding back the patients with) what changes have been made because of people\u0026rsquo;s responses, feeling like they have been listened to (will encourage them to fill).\u0026rdquo;\u003c/em\u003e (Female, White British, 42, Bradford).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;It's their responsibility to educate me (on the process) otherwise I will be reluctant to share my experience.\u0026rdquo;\u003c/em\u003e (Female, Afro-Caribbean, 54, Leeds).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. (reassure the patient) it\u0026rsquo;s not going to be sold onto a pharma company or insurance company. It\u0026rsquo;s going to be used for your own healthcare\u0026rdquo;\u003c/em\u003e (Male, White British, 69, Bristol).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eProvide options for face-to-face and telephone conversations\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eParticipants largely preferred verbal conversations for any monitoring of patients\u0026rsquo; SDM experience (with or without an interpreter) emphasising this mechanism tends to ensure inclusivity, gives patients an opportunity to ask questions and add details not otherwise focus of the survey.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;\u0026hellip;. \u003cem\u003everbal face to face medium is easier for discussion and understanding for most of the patients\u003c/em\u003e\u0026rdquo; (Female, Asian-Pakistani, 78, Bradford).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;If you sit with someone face to face, with the interpreter there, the whole conversation just opens up. People will give you more than a tick-box answer\u0026hellip; they might even tell you their whole story. That\u0026rsquo;s when you really understand\u0026rdquo;\u003c/em\u003e (Female, Roma-Czech, 35, Bradford).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePreference for easy and short surveys\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eA short, simple survey is easier for patients to complete. Complex questions should be avoided to ensure patients understand and effectively respond to the questions.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;it\u0026rsquo;s better not to have formal questions in survey. Make it friendly for the patient.\u0026rdquo;\u003c/em\u003e (Male, Middle Eastern, 38, Bristol).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;it is really important to keep the survey as short as possible, otherwise it's barrier to patients actually doing it or completing it.\u0026rdquo;\u003c/em\u003e (Male, British Asian, 41, Bristol).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMultilingual reporting for inclusivity\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eProvide the survey in patients\u0026rsquo; preferred language to ensure patients can effectively share their SDM experience. Equally, hospitals could provide support staff to help patients with filling out the surveys in the clinical setting.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. survey should be carried out in different languages [\u0026hellip;]otherwise it misses out the very population whom it intends to improve decision making for.\u0026rdquo;\u003c/em\u003e (Female, Asian Pakistani, 70, Bradford).\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;. interpreters should be provided to patients to fill in a survey\u0026rdquo;\u003c/em\u003e (Female, Black African, Bristol).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eConsider the timing of surveys\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eThe timing of the survey should be carefully chosen to avoid overwhelming patients immediately after the consultation while ensuring it is not delayed to the point where they have forgotten their experience.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;conversation should be taking place fairly quickly otherwise patients may forget about how did everything (SDM process) go\u0026rdquo;\u003c/em\u003e (Male, Mixed Asian, 55\u0026ndash;60, Bristol).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eThis qualitative study explored the views of underserved groups to inform the development of a decision support intervention to improve surgical SDM. The findings highlight a complex interplay of cultural, structural, and systemic factors that impede effective SDM for underserved groups. The work supports and extends existing research showing that SDM processes often exclude underserved populations. It further highlights the need for SDM to consider the needs of underserved populations and adapt methods to be more inclusive.\u003c/p\u003e\u003cp\u003eConsistent with previous research [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e], we found wide variation in how patients engaged with SDM, shaped by a combination of structural, cultural and inter-personal factors. Several participants exhibit discomfort in asserting their views due to low confidence, language barriers, digital exclusion, and uncertainty about their role in clinical conversations. Time-constrained consultations and a perceived need to be seen as \u0026lsquo;good patients\u0026rsquo; further discouraged active participation in discussions about surgical treatment [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. While these patterns were most pronounced among older adults and South Asian participants, they appeared across different backgrounds and often reflected the absence of appropriate support. Many participants did not recognise the value of their own input, and viewing HCPs as better equipped to make decisions on their behalf [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eThese findings align with distinctions in the existing literature between \u0026lsquo;mandatory autonomy\u0026rsquo;, where all patients are expected to participate regardless of context, and \u0026lsquo;optional autonomy\u0026rsquo;, which recognises that people differ in their readiness and ability to engage [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. Many participants in our study felt unable, rather than unwilling, to participate in decisions about surgical treatment [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. Their accounts point to the need for sufficient consultation time, accessible communication, strong patient-provider relationships, and culturally responsive care that help patients participate in ways that match their circumstances and needs [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eThe desire for culturally sensitive support was also reflected in patients\u0026rsquo; preferences for the involvement of community teams, non clinical hospital staff and community organistsations during SDM. This desire reflects the importance of embedding decision-making processes within trusted spaces and support systems, particularly for those facing intersecting barriers. Incorporating culturally informed communication, community-based and extended support networks, and personalised guidance can improve the quality and relevance of SDM for underserved patients [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eAlthough digital tools such as patient-reported outcome measures (PROMs) are increasingly promoted for improving patient engagement and accountability [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e], our findings challenge their assumed accessibility and appropriateness. These tools are not always accepted or used by patients who are already limited in their digital engagement and capability [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e]. Participants expressed concerns around digital literacy, data privacy, and the impersonal nature of online platforms. These views contrast with studies suggesting PROMs enable real-time patient feedback and support service improvement [\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e, \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e], and instead aligns with critiques that digital innovations may worsen disparities when they are not adapted to the needs of disadvantaged groups [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e]. By identifying specific, context-sensitive strategies, such as involving non-clinical staff, leveraging trusted community organisations, using face-to-face verbal communication, this study provides practical guidance for future interventions using feeding back systems to make SDM inclusive and responsive [\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e]. Using patient feedback to actively inform service improvement and establishing visible and accountable feedback loops can strengthen patients trust in healthcare and demonstrate that patient voices shape care in tangible ways. This approach reflects the aims of the ALPACA study and aligns with wider literature on structural inequalities in healthcare [\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e] Our findings resonate with this literature, reinforcing the importance of including diverse voices in shaping healthcare policy, ensuring that policies address structural inequalities and reflect the needs of all communities.\u003c/p\u003e\u003cp\u003e\u003cb\u003eImplications for future research and practice\u003c/b\u003e\u003c/p\u003e\u003cp\u003eBy establishing novel, community-informed solutions to promote equity and inclusion in surgical SDM, our findings have direct implications for the design of inclusive SDM interventions and patient feedback systems. They underline the critical importance of trust, cultural sensitivity, and personalised engagement in facilitating SDM among underserved groups, and highlight the need for low-tech, linguistically accessible channels for communication and feedback, which challenge the prevailing reliance on digital mechanisms. Participants\u0026rsquo; nuanced views on who should deliver SDM and receive feedback underscore the importance of flexibility and tailoring in intervention design.\u003c/p\u003e\u003cp\u003eThe recommendations generated through this work can be directly applied to the co-development of inclusive decision support interventions, as planned in the next phase of the ALPACA study [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. Our findings are also relevant for health policymakers and service providers seeking to operationalise the NICE SDM guidelines in a manner that is genuinely inclusive. Future research should test and refine the recommendations identified in this study, and evaluate the impact of tailored, inclusive SDM interventions on decision quality, patient satisfaction, and health equity.\u003c/p\u003e\u003cp\u003e\u003cb\u003eStrengths and limitations\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe strength of this research lies in its robust qualitative methods, which explored the perspectives of ethnically, culturally, linguistically, and socio-economically diverse communities. Conducting interviews in participants\u0026rsquo; preferred languages (including Urdu and Punjabi), in familiar community settings, and across two demographically distinct UK cities, allowed the researchers to access candid, contextually rich accounts. Through extended engagement and in-depth and multilingual discussions, this study has generated findings grounded in the experiences of patients from underserved groups.\u003c/p\u003e\u003cp\u003eA limitation of the study is that the insights are grounded in the specific settings of Yorkshire and Humber (primarily Bradford), and Bristol. As such, applicability to other NHS contexts may vary depending on respective service delivery models, population demographics, and organisational priorities. The credibility and relevance of qualitative findings depend on clear contextualisation and theoretical transparency [\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e], both of which we have sought to provide to support decisions about transferability. Additionally, the depth of insight afforded by purposive sampling, reflexive thematic analysis, and patient and public involvement throughout the study adds to the rigour and trustworthiness of our findings.\u003c/p\u003e"},{"header":"5. Conclusion","content":"\u003cp\u003eThis qualitative study explored the experiences and attitudes of underserved groups towards SDM. The findings reveal that SDM processes as currently delivered inadequately address the intersectional barriers experienced by underserved groups. Participants identified the need for feeding back of SDM experience as a potentially valuable mechanism to promote accountability and foster improvements in surgical communication. However, they also emphasised that for such systems to be inclusive and meaningful, they must be sensitive to cultural norms, digital exclusion, educational inequalities, language barriers, and challenges related to comprehension. Without these elements, any intervention to improve SDM is unlikely to reach its intended outcomes and runs the risk of reproducing inherent power structures, silencing already marginalised voices.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eCOREQ\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eConsolidated criteria for Reporting Qualitative research\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eGRIPP\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eGuidance for Reporting Involvement of Patients and the Public\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eHCP\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eHealth Care Professional\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eNHS\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eNational Health Service\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eNICE\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eNational Institute for Health and Care Excellence\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003ePAG\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003ePatient Advisory Group\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003ePROMs\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003ePatient Reported Outcome Measures\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eSDM\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eShared Decision Making\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding declaration\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study is supported through an National Institute for Health and Care Research (NIHR), Programme Development Grant, Award ID: NIHR205174. This study is led and sponsored by the University of Bristol and hosted by NHS North Bristol Trust.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor\u0026rsquo;s declaration of interest and disclaimer:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe views expressed are those of the authors and not necessarily those of the NIHR or NHS, England. We confirm that this manuscript is original, has not been published previously, and is not under consideration for publication elsewhere. All authors have approved the final version of the manuscript. We also confirm that there is no overlapping information with other publications and no potential conflicts of interest to declare. The authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research is designed and conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. The study received ethics approval from the NHS Health Research Authority North West-Liverpool Central Research Ethics Committee (Reference: 21/PR/0345). We gave verbal and written information about the study aims and participants\u0026rsquo; involvement prior to consenting the participants. Participants provided electronic consent through a link to a secure data management platform (RedCap Version 11.1.18) before any study activity commenced. We presented a printed copy of the consent form to participants who were unable to consent digitally or who preferred the paper-based method. Participants were assured of their confidentiality and anonymity of their information and identity and were assured of their right to withdraw from the study at any time.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eZH wrote the first draft and had the primary responsibility for the final content of the manuscript. ZH, CH, JH and AM co-wrote the final manuscript and designed analytical strategy. All the authors commented on the manuscript and revised it critically and approved the final manuscript. AM and JB conceptualised the study. ZH and CH collected the data. ZH, CH, JH, AM, VS conducted the formal analysis. JH created the study design. ZH and CH performed project administration. All the authors ZH, CH, JH, AM, LR, KA, CC, HB, VS, JB validated the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe are grateful to different community organisations to help engage with communities in Bradford and Bristol, Community Ageing Research 75+ (CARE75), to promote ALPACA study among older adults (75+) in Bradford district, and Zubeda Khatoon from Ethnic Minority Research Inclusion network (EMRI) to introduce researchers in Bradford to different community groups for engagement, and the participants in Bradford and Bristol who shared their time, stories, and insights. We thank the patient advisory group, Molly Kenyon, Mohinder Sing Chana, Francesco Santino Palma, Ann Njogu, and Rizwan Rehman, for their ongoing contributions to data interpretation and study design and community research advisory group (CRAG) of Better Start Bradford Innovation Hub, Born in Bradford for guiding the recruitment strategies in Bradford.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eBomhof-Roordink H, G\u0026auml;rtner FR, Stiggelbout AM, Pieterse AH. Key components of shared decision making models: a systematic review. BMJ open. 2019;9(12):e031763.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eJolles MP, Richmond J, Thomas KC. Minority patient preferences, barriers, and facilitators for shared decision-making with health care providers in the USA: a systematic review. 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The false hope of current approaches to explainable artificial intelligence in health care. Lancet Digit Health. 2021;3(11):e745\u0026ndash;50.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eFarrell TW, Hung WW, Unroe KT, Brown TR, Furman CD, Jih J, Karani R, Mulhausen P, N\u0026aacute;poles AM, Nnodim JO, Upchurch G. Exploring the intersection of structural racism and ageism in healthcare. J Am Geriatr Soc. 2022;70(12):3366\u0026ndash;77.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eGreen J, Thorogood N. Qualitative Methods for Health Research. 4th ed. London: SAGE; 2018.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-informatics-and-decision-making","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"midm","sideBox":"Learn more about [BMC Medical Informatics and Decision Making](http://bmcmedinformdecismak.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/midm/default.aspx","title":"BMC Medical Informatics and Decision Making","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Surgery, shared decision making, underserved groups, decision support intervention, feeding back system, inclusivity","lastPublishedDoi":"10.21203/rs.3.rs-7525686/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7525686/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eHigh quality shared decision making (SDM) is recognised as a cornerstone of modern medical practice, and increasing patient involvement is a key priority in health policy. Approximately 312.9\u0026nbsp;million patients undergo surgery in the world each year. Effective SDM is crucial for all these patients, yet existing SDM interventions disproportionately benefit individuals with higher education levels, better health literacy, and greater socioeconomic advantage. This qualitative study explored patient experiences of SDM and their views on how to improve it, with particular attention to the needs of marginalised groups.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eEmploying a qualitative study design, face-to-face or remote semi-structured interviews were conducted with community members in two UK locations: the Yorkshire and Humber region, mainly centred in Bradford, and Bristol. We adopted purposive sampling to explore the views of individuals experiencing intersectional health inequalities due to older age, ethnic minority and economically disadvantaged background. Transcripts were thematically analysed using an inductive approach.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eThe findings from 31 interviews consist of three main themes on underserved groups\u0026rsquo; perceptions about NHS and healthcare professionals, capacity of patients to engage in SDM, feeding back of SDM experience. Notably, the findings highlight that inadequately designed SDM processes and structural barriers fail to accommodate the capacities and needs of underserved patients. Feeding back of the patient\u0026rsquo;s experience using non-digital (verbal, telephonic or paper based) and multi-lingual options to identify where effective SDM fails and making SDM process adaptive and tailored to the needs of patients are suggested as ways to improve SDM for underserved groups. A set of recommendations to make SDM more equitable are provided.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003eAddressing the unique challenges faced by underserved groups in SDM requires a multifaceted approach that includes enhancing communication, building trust, addressing technological barriers, and respecting cultural values. The insights from participants highlight the need for tailored interventions and flexible, inclusive strategies to ensure equitable and effective SDM for all patients. The findings from this study will inform the design of a decision support intervention to improve SDM before surgery.\u003c/p\u003e","manuscriptTitle":"“Breaking the Silence”: A Qualitative Study Exploring How to Improve Surgical Shared Decision Making for Underserved Groups","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-23 08:08:00","doi":"10.21203/rs.3.rs-7525686/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-05-20T09:55:27+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-24T10:13:31+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-16T16:50:51+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"239657209563213397501334343004676653765","date":"2025-10-13T09:40:38+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"306925432890734014397737605567579665466","date":"2025-10-09T20:07:13+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-10-09T15:40:56+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-09-17T09:27:48+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-09-17T04:39:24+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-09-17T04:39:18+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Medical Informatics and Decision Making","date":"2025-09-03T09:56:51+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-informatics-and-decision-making","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"midm","sideBox":"Learn more about [BMC Medical Informatics and Decision Making](http://bmcmedinformdecismak.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/midm/default.aspx","title":"BMC Medical Informatics and Decision Making","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"cb3501ab-7f5c-4c8e-8a93-491008060058","owner":[],"postedDate":"October 23rd, 2025","published":true,"recentEditorialEvents":[{"type":"decision","content":"Revision requested","date":"2026-05-20T09:55:27+00:00","index":"","fulltext":""}],"rejectedJournal":[],"revision":"","amendment":"","status":"in-revision","subjectAreas":[],"tags":[],"updatedAt":"2026-05-20T10:08:52+00:00","versionOfRecord":[],"versionCreatedAt":"2025-10-23 08:08:00","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7525686","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7525686","identity":"rs-7525686","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}