Psychological services for people with Inflammatory Bowel Diseases: Care co-designed by consumers

Psychological services for people with Inflammatory Bowel Diseases: Care co-designed by consumers | 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 Psychological services for people with Inflammatory Bowel Diseases: Care co-designed by consumers Taryn Lores, Antonina Mikocka-Walus, Jane M Andrews, A /Prof Subhadra Evans, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3838848/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract Background There is a need to improve psychological care for people with Inflammatory Bowel Diseases (IBD), noting the high psychosocial burden of disease. Aims This study qualitatively explored the views of people living with IBD to help co-design future services that better meet the psychological needs of consumers. Methods Adults with IBD were recruited to attend virtual focus groups to discuss what they want most in an IBD-specific psychological service. The discussions were recorded and transcribed, and data were analyzed using conventional content analysis. Draft results were summarized midway and reviewed by remaining focus groups and a final expert consumer. A quantitative dataset was created of comment frequencies. Results Thirty-one participants took part in the study: ten focus groups were held with an average of three participants per group. The analysis identified 254 codes, 38 sub-categories and six categories. Five main categories were identified for an IBD-specific psychological service: People-Centered Healthcare (commented on by 90% of participants), Education and Preparation (83%), Social Connection (83%), Psychological Input (93%), and Accessible Services (97%). Results were summarized in a set of proposed clinical guidelines. Conclusions The findings of this study identify important insights from people living with IBD regarding priorities for psychological services. IBD services should focus on improving education, addressing social connection, and integrating psychological input, as well as becoming more people-Centered and accessible. It is hoped that IBD services consult the proposed clinical guidelines to inform co-designed service improvements. Inflammatory Bowel Diseases psychological factors co-design Figures Figure 1 Introduction Inflammatory Bowel Diseases (IBD) such as Crohn’s disease (CD) and ulcerative colitis (UC) can profoundly affect a person’s quality of life[1]. Symptoms such as diarrhoea, urgency, pain and fatigue are chronic and can hinder daily functioning. Psychological problems like anxiety and depression are highly prevalent[1]. Other common psychosocial issues include trauma, body dissatisfaction, disordered eating, social isolation and sexual dysfunction[2, 3]. Additionally, psychosocial problems are associated with greater healthcare burden and increased disability in IBD[4, 5]. IBD is best managed with a broad, multidisciplinary approach[6]. Where integrated, psychological care has been associated with reduced healthcare use, increased treatment adherence and improved mental health and quality of life[4, 7]. However, psychological care is often absent from IBD care settings[8-10]. Recent research has highlighted a desire for greater recognition of psychological concerns[11], more mental health discussion with IBD clinicians[8] and increased access to treatment options[12]. To improve IBD healthcare, psychological services and supports need to be developed. However, the specific preferences and priorities of IBD consumers for these services are unknown. The current study aimed to qualitatively explore the views of people living with IBD regarding what is most important in an IBD-specific psychological service. The results will inform proposed guidelines that can be used by IBD teams to co-design high-quality, targeted IBD psychological services for their consumers. Methods Participants and Recruitment Participants were adults with a diagnosis of IBD (CD, UC or IBD-unspecified [IBD-U]) living in Australia. The study was advertised by two South Australian public hospital IBD services and patient advocacy organization Crohn’s and Colitis Australia via social media platforms and email. The Principal Investigator (TL) conducted eligibility screening by telephone. Participants were offered an AUD$25 voucher for their time (funded via TL’s higher degree research [HDR]). Data Collection Background survey Participants completed a brief questionnaire via online survey tool Qualtrics to collect demographic, clinical and psychological care data. Focus groups Focus groups were chosen as the qualitative data collection method as facilitation of participant interaction and discussion allows for in-depth exploration. Groups were held virtually using the telehealth platform Zoom. Discussions were audio recorded and transcribed. The focus groups were facilitated by TL – a trained and experienced cisgendered female health psychologist ( M. Psych Health ) who had no prior relationship to participants. Participants were informed TL worked in the IBD field and the study would contribute to HDR. Ten groups were held between October 2022 and April 2023 comprising a total of 30 participants (each group averaging three) and lasting 50-110 minutes. Discussions centered around an initial open question with prompts used as needed. The guide was pilot-tested with two authors (AC-H, SE) – see Online Resource 1 for the general structure. Data analysis commenced with the first transcription and continued until no new categories were identified (i.e., theoretical data saturation). A draft results summary was prepared after the sixth focus group and was reviewed by the final four groups. Participants were given an opportunity to review the transcripts after attendance. Consumer review The final participant recruited (P31) was invited to review a one-page outline of the result categories. Feedback was discussed during two virtual interviews. Analysis Conventional/inductive content analysis[13] was used by TL (single coder) to analyze the data. TL familiarized herself with the transcripts and reviewed these for key words. Data were broken down into initial codes and classed into sub-categories and then over-arching categories using software program Nvivo. Code names were derived from the data. An audit trail was kept recording progression of data collection and analysis. A quantitative dataset of code frequencies by group, individual and overall was created. Two authors (AC-H, SE) each reviewed 20% of the data after analysis of six focus groups. All authors approved the results. Results Participant Sample Fifty potential participants registered interest and were contacted: of these, eight were lost to follow-up, seven were deemed ineligible (e.g., no IBD diagnosis) and one withdrew. The remaining 34 eligible participants provided written consent. Three dropped out before focus group participation (n = 2 no response, n = 1 no suitable time). The final participant sample (N = 31) comprised 10 men and 21 women (68%) aged between 21 and 80 years (median = 46 years, IQR = 24), most from South Australia (84%). Sixteen had CD and 15 had UC. Disease duration ranged from one to 54 years (median = 7 years, IQR = 13). Twenty participants (65%) were in remission and 19 (61%) received IBD care in a public hospital setting. Most reported typically never being asked about mental health by their IBD clinician (71%), wanting to be asked more frequently (81%), and not having have access to psychological care in their IBD setting (84%). Ten participants (32%) were currently participating in psychological care, eight (26%) had previously and 13 (42%) had no experience. Online Resource 2 summarizes all participant characteristics and Online Resource 3 participants’ experience with psychological care. IBD Psychological Care The analysis identified 254 codes, 38 sub-categories and six overarching categories. A complete list of codes, sub-categories and categories with associated frequencies is provided in Online Resource 4 . Five main categories described what is most wanted in an IBD-specific psychological service: 1) People-Centered Healthcare , 2) Education and Preparation , 3) Social Connection , 4) Psychological Input , and 5) Accessible Services . An additional sixth category was identified to summarize codes about psychologically unsupportive care: 6) Psychologically Unsupportive . Figure 1 illustrates the key categories and sub-categories. Table 1 sets out illustrative quotes for the main categories and sub-categories. People-Centered Healthcare In discussing what constitutes a “gold standard” IBD psychological service, twenty-seven participants referred to the need for healthcare to be more people-Centered. For example, 21 (70%) stated the IBD service would ideally be multidisciplinary and include a psychologist, a dietitian and dedicated nursing staff. Seventeen (56%) wanted to see a broader range of health needs addressed, such as mental health, diet, and comorbid functional symptoms: “ there are other aspects of this disease that affect your health in other ways…” (P11, FG3). Fourteen participants (47%) mentioned addressing psychological needs directly, with eight suggesting a standard early assessment: “ not everybody needs psychological intervention, but I think the service should definitely be offered and be part of the diagnosis program, I mean, without option” (P24, FG7). People-Centered healthcare also referred to factors that are indirectly supportive. Eleven participants (37%) highlighted the importance of clinicians being experts in IBD and knowledgeable in common comorbid issues (such as mental health). A compassionate approach was mentioned as crucial by 14 (47%): “ I just would have liked to have had a kind word at the beginning” (P27, FG8). Fifteen (50%) wanted greater consideration of individual factors such as age and gender. Better collaboration between clinicians, as well as between services, would likely reduce unnecessary stress (n = 12, 40%). Four participants (13%) even raised the value of ongoing research, to ensure IBD management continues to advance. Education and Preparation Twenty-five participants (83%) described education as a type of psychological service. Fifteen (50%) discussed benefits, including sufficient information and preparation, reduced anxiety, and empowerment. Three participants commented specifically that education is therapeutic: “ even though it's like it's not meant to be psychological support, it does provide psychological support, because we feel that we are listened [to]… and that someone is actually on top of it” (P1, FG6). Ten (33%) wanted education to be provided by multiple clinicians, not just their IBD doctor (e.g. [re IBD nurses] “…they are good, you know, in killing your anxiety ” P9, FG6). Eight participants (27%) reported that education is particularly vital at diagnosis, when IBD is most unfamiliar. Twenty (67%) said more information on IBD is required: “ having a way of when people have been newly diagnosed… providing the right level of education… A proper baseline amount of information about the condition” (P4, FG1). IBD medications and side-effects, coping strategies, surgery, complications and diet were also identified as needing greater explanation. Psychological health and health promotion were mentioned by seven (23%) and nine participants (30%) respectively, as topics where further education is desired. Social Connection Most participants (n = 25, 83%) talked about the ideal psychological service facilitating social connection. Benefits discussed by 18 (60%) included belonging, relatability, sharing of ideas, reassurance and hope; for example: “It’s a very lonely journey… you really feel you’re running your own race… People who've got lived experience with Crohn’s should always be connected… so you can feel that you're not just going on this journey alone” (P3, FG1). Fifteen participants (50%) mentioned the usefulness of informal supports, such as family and friends, lived experience stories, and consumer gatherings: “ it was a meet-and-greet, you know, coffee and a bit of food. It was more like an enjoyable meet ” (P27, FG8). Formal service ideas were provided by 12 (40%) and included peer advice, activity groups, social prescription, and mentoring: “a peer support group… can help make connections and have that sort of sense of community” (P18, FG5). One participant also listed key qualities for a peer support worker, such as living well with IBD, being knowledgeable and providing hope. Psychological Input Most participants (n = 28, 93%) commented on psychological input. Eleven (37%) listed benefits such as having someone to talk to, reducing distress, receiving emotional validation, and learning practical coping tools. One referenced her own experience: “I think being able to talk to someone in a non-judgmental space about something that… is pretty embarrassing. It's just really good… the psychologist that I spoke to just had a way of making it all okay and just comfortable. And I just felt safe… being able to talk really frankly with someone about all the nitty, gritty, yucky details” (P19, FG3). Eighteen (60%) highlighted critical times for psychological input, most notably at diagnosis, acute disease flares and surgery; four also pointed out that it is important any time it is wanted and needed. Psychological treatment targets were mentioned by 25 participants (83%). Examples of psychological issues included anxiety, stress, depression, adjustment, embarrassment, body dissatisfaction, trauma, coping and outlook: “I think positive thinking has a lot to do with how you cope” (P17, FG2). Social targets were communication, social limitations and intimacy and relationships. IBD concerns included managing symptoms, surgery, medications and uncertainty. One participant illustrated the importance of psychological input when describing her experience in hospital: “ When you're in hospital and feeling scared and afraid and not sure about the future, I think it would be helpful to have like a psychologist come in and talk to you. And when you're going through those surgeries and that, because it’s quite traumatic… Looking back to that moment, I was really scared… there was no psychological support, and I feel like that's really needed” (P14, FG2). Nine participants (30%) outlined the positive qualities they would like in a psychologist, including empathy and being a companion on the journey: “… empathize and help people process this whole new world of Crohn’s and IBD… help you navigate your own journey, holding your hand” (P15, FG4). IBD knowledge was also preferred: “ with the trauma that some people have been through… you really want someone that can relate to you – maybe not from lived experience, but from at least knowledge of the medical side” (P6, FG3). Nine (30%) showed an awareness of types of psychological interventions. The intervention mentioned most was hypnotherapy (n = 4, 13%). Pastoral care and exercise were also noted as psychologically supportive approaches by two and one participant/s, respectively. Accessible Services All but one participant made comment/s on service accessibility (97%). Accessibility included greater availability of clinicians (n = 12, 40%). The most desired setting for psychological care was integrated within the IBD team (n = 9, 30%), although one participant advocated for an external location. Twenty (67%) listed a variety of delivery formats such as face-to-face, phone, telehealth, online and via email, to cater to a variety of needs and preferences. Eight participants (27%) commented that IBD psychological services should be complemented with credible resources via consumer events, videos and written materials. Thirteen (43%) highlighted the importance of partners and family members also accessing psychological services: “psychological help for my wife and my children, and even further back in the early days, for my parents, would be a fantastic thought... a very, very good thing” (P16, FG2). Seven (26%) also emphasized the need for services to be promoted widely, so that people know what is offered and how it can be accessed. Psychologically Unsupportive A sixth overarching category summarized what participants found to be unhelpful for mental and emotional wellbeing. Sub-categories reflected the reverse of the abovementioned five categories (e.g., poor education, unhelpful peer support, barriers to access) – see Online Resource 4. Consumer Review The expert consumer’s review of the results was confirmatory. The importance of each category was reinforced, as well as the topic of IBD psychological care: “ The clinician who's looking at this, they need to realize it's a duty of care… It's really important… for that gastro or that head person to lead the way on making sure that psychological services are put into their care… It’s pertinent on someone’s health, it’s huge actually! ” (P31). The consumer provided specific feedback and suggestions for drafting the clinical guidelines. The consumer queried whether the first category People-Centered Healthcare should be split into two, noting several sub-categories refer to consumers while others relate to clinicians. After discussion with co-authors, the category was kept intact as it was thought the sub-categories were still related. Clinical recommendations Online Resource 5 provides an overview of recommendations for IBD clinical care in the form of proposed clinical practice guidelines. Discussion This qualitative study is the first to explore the priorities of IBD consumers with respect to tailored psychological services for the purpose of co-design. The findings highlight clear themes for the types of services desired by people with IBD, as well as care structures and delivery mechanisms that support psychological health. In this study, participants were asked about the ideal, perfect or “gold-standard” IBD psychological service, and the results emphasize the value of broader care components beyond individual psychological therapy. Three of the overarching categories referred specifically to interventions: Education and Preparation , Social Connection and Psychological Input . These services have the potential to improve psychological wellbeing in different ways. For example, education improves consumer knowledge and understanding, which have been associated with higher levels of self-efficacy, medication adherence and treatment engagement[ 14 ]. In IBD, education has also been found to reduce psychological distress and improve self-management and coping[ 15 ]. Education has the potential to reduce the psychological burden of IBD. Social connection is psychologically helpful because it offers people with IBD various emotional, practical and informational supports. The importance of peer connection is not surprising, as it is well-established that relationships and connectedness are protective for both mental and physical health[ 16 ]. In contrast, loneliness and isolation are risk factors for anxiety and depression, elevated inflammation and mortality[ 17 ]. Of note, informal social interactions (e.g., support from family and friends) were mentioned by more participants than formal activities. Thus, as a service, social connection may be about exploring and reinforcing use of a person’s current social network, or it may involve more deliberate referral to structured peer supports. Psychological input has the potential to directly improve mental health for IBD consumers by reducing distress and increasing coping. The growing literature on psychological interventions in IBD shows short-term improvements in mood and anxiety and more consistent benefits for quality of life[ 18 ]. While some of the input discussed by participants could be provided by other IBD clinicians (e.g., “ being able to talk really frankly with someone about all the nitty, gritty, yucky details” [P19, FG3]), the overall desire was for a dedicated IBD psychologist or mental health provider. Psychological intervention can treat IBD-related distress, and (as recognized by some participants) support self-management and health promotion which are important for those living with a chronic illness. The other two main categories referred to the structure and delivery of health services: People-Centered Healthcare and Accessible Services . The message underpinning people-Centered healthcare is that there are certain clinician qualities and healthcare practices that promote emotional and mental wellbeing. While past research is mixed, some evidence suggests that people-Centered care is associated with greater treatment satisfaction and self-management[ 19 ]. When people are cared for by a multidisciplinary team of knowledgeable clinicians in a holistic, collaborative and compassionate manner, it makes sense that they would feel more psychologically supported. Making services and interventions accessible is also important. Only 16% of study participants reported current access to psychological care in their IBD setting, consistent with past research[ 8 , 10 ]. Of note, nearly half (42%) raised access for family members and partners – this is in line with a recent systematic review which identified the need for greater education, social support and mental health input for IBD carers[ 20 ]. This study’s findings are consistent with recent research. For example, a review of the UK national IBD standards[ 9 ] highlighted the need for greater education, holistic care, access and multidisciplinary services. They also identified a desire for more educational programs, resources, communication between IBD services and external providers, and support with mental health. Another study of consumers in the UK and Australia[ 11 ] identified three similar themes: vicious cycle of IBD and psychosocial health, the need for biopsychosocial health integration and stigma of hidden disease. Further, a Scottish co-design study found three themes important for improving IBD care: quality of life, IBD clinicians and better access, and explicit IBD care pathways[ 12 ]. The closeness of our findings with these studies investigating IBD care more broadly (i.e., not psychological services specifically) is particularly telling: it emphasizes the importance of care quality for psychological health and wellbeing. In addition, there are parallels between this study’s results and current published IBD quality of care standards. For example, the Australian IBD Standards[ 6 ] include having multidisciplinary care, a people-Centered approach and education. The presence of a psychologist and early psychological assessment are also consistent with UK IBD Standards[ 21 ]. Further, the findings are in line with the priorities of The Australian National Action Plan for IBD 2019[ 22 ]. For instance, People-Centered Healthcare is consistent with the priority area of a skilled and accessible multidisciplinary workforce. Accessible Services has several sub-categories in common with the priority area access to responsive IBD helplines. Finally, Education and Preparation aligns with the priority area patient knowledge. Ultimately, the aim of the current study was to ascertain the priorities and preferences of people living with IBD for psychological care to inform the co-design of future services. The proposed set of clinical practice guidelines ( Online Resource 5 ) includes improving and/or incorporating the three interventions into IBD management and restructuring or refining practices and delivery mechanisms. It is hoped that IBD services will review these guidelines and work towards adopting the recommendations over time. For example, new care settings could use these guidelines to inform service design, while existing services could use them for improvement initiatives and business cases. The main limitation of this study is the potential for bias. However, multiple strategies were used to minimize this risk, including pilot testing the focus group guide, code checking by two additional authors and results review by participants. Participants were self-selected and mostly from one Australian state, but their views are likely transferable given the similarities with other data sources. Future research may include IBD service audits or consumer surveys to compare current practices with the proposed guidelines to determine development priorities. Services that currently incorporate psychological care might qualitatively explore consumers’ experiences to gain insight into specific benefits and challenges. Further development of the proposed clinical guidelines is also recommended. In conclusion, this study provides valuable insights from people living with IBD and clinical recommendations for co-designing services that better address psychological health and wellbeing. Specifically, IBD services should emphasize consumer education, social connection and psychological input. Beyond this, IBD services should work towards becoming more people-Centered and accessible. It is hoped that the proposed guidelines will be used by IBD clinicians to better support the psychological health of IBD consumers. Declarations Acknowledgements We would like to thank all the participants who volunteered their time to participate in this important study and for their openness and vulnerability in sharing their experiences and ideas. Thank you also to Crohn’s and Colitis Australia and The Queen Elizabeth Hospital IBD Service for promoting the research widely. This work was supported by higher Degree Research funding provided by Deakin University for participant reimbursement. Ethics Approval This study was approved by the Human Research Ethics Committees (HREC) of the Central Adelaide Local Health Network (CALHN; Ref#1660) and Deakin University (DUHREC Ref#2022-236). Consent to Participate All participants provided written informed consent to participate in this study. Data Availability Statement The data underlying this article cannot be shared publicly due to participant privacy. The data will be shared on reasonable request to the corresponding author. Funding This work was supported by Higher Degree Research funding provided by Deakin University for participant reimbursement. Authors’ Contributions TL: conceptualization (lead); data curation (lead); formal analysis (lead); funding acquisition (lead); investigation (lead); methodology (equal); project administration (lead); visualization (lead); writing – original draft preparation (lead); writing – review and editing (lead). AM-W: conceptualization (supporting); funding acquisition (supporting); methodology (equal); supervision (supporting); writing – review and editing (supporting). SE: conceptualization (supporting); data curation (supporting); formal analysis (supporting); methodology (supporting); supervision (supporting); writing – review and editing (supporting). JA: conceptualization (supporting); methodology (supporting); writing – review and editing (supporting). KL: conceptualization (supporting); methodology (supporting); writing – review and editing (supporting). AC-H: conceptualization (supporting); data curation (supporting); formal analysis (supporting); methodology (equal); project administration (supporting); supervision (lead); writing – original draft preparation (supporting); writing – review and editing (supporting). Conflicts of Interest / Financial Disclosures TL: declares speaker’s fees from Mindset Health AC-H, SE, AM-W: all declare nil conflicts of interest KL: declares speaker’s fees, advisory Board fees, and/or conference travel/registration support from: Abbvie, Bristol Myers Squibb, Chiesi, Dr Falk, Ferring, Gilead, Guidepoint, Intercept Pharmaceuticals, Janssen-Cilag, MSD, Norgine, Pfizer, Sandoz, Takeda, the RAH Research Fund JMA: declares speaker’s fees, advisory Board fees and educational/research grants paid to her institution from: Abbott, AbbVie, Allergan, Anatara, AstraZeneca, Bayer, BMS 2020, Celegene, Celltrion, Falk, Ferring, Gilead, Hospira, Immuninc, ImmunsanT, Janssen, MSD, Nestle, Novartis, Pfizer, Sandoz, Shire, Takeda, Vifor, RAH research Fund, The Hospital Research Fund 2020-2022, The Helmsley Trust 2020-2023. TL, AC-H, SE, AM-W, LR and JMA all declare that they have no conflicts of interest or financial disclosures for this research. 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Inflammatory Bowel Disease National Action Plan 2019. 2019. Tables Table 1. Illustrative quotations for IBD psychological care over-arching categories and sub-categories. Category Sub-category Illustrative quotations People-Centered Healthcare Multidisciplinary team / care “I think it'd be nice to have like… a dedicated place where maybe they did… all these other things together… counselling, group therapy, a dietitian, you know… A whole center for IBD where there was like… different clinicians doing different treatments.” (P11, FG3) Holistic model of healthcare “So, to me it should be more of an awareness that when you first get it you should be able to see like a clinical nurse or someone… that can look at other areas and maybe say to you ‘you know, you could go here, or you could go there, or there's this available…’” (P27, FG8) Psychological awareness and action “The gastroenterologist needs to be able to acknowledge when a patient needs psychological care, as many will at some point… They just need to have the right people in place to send you – the gastroenterologist should be equipped to know who I can see.” (P30, FG10) Knowledgeable and skilled clinicians “So, there is a lot of education that would be… for the people that are in care. The doctors, the specialists, they don’t seem to be either aware [of] or educated or concerned [about]… this sort of stuff at all… It would be introducing that, adding that to people who are studying to become specialists in this area.” (P5, FG5) Collaboration between clinicians / services “I actually think the IBD clinic should be involved, or the cancer clinic should be seeking more help from the IBD clinic...” (P20, FG2) Compassionate and responsive approach “My doctor’s great… he puts his hand on mine and says ‘oh, I'm sorry to hear you’re not feeling too well, you’ve had bit of an uphill battle’ – you know, it gives you that little bit of comfort.” (P27, FG8) Personalized / targeted approach “It's critical that there's stepped levels of care. So, a health educator… that's the beginning, and then some… may need counselling, they may or may not need a psychologist, they may or may not need psychiatric support… It's really crucial that there's no attempt to create a single psychological support approach. It’s got to have scope for… a higher level of care as their needs go there.” (P7, FG4) Ongoing research “More research about how your gut affect your mental health.” (P26, FG9) Education and Preparation Benefits of education “Maybe talking about whether there were different options [re medications], which I now know that there were… they just were never communicated to me… that might have helped… I like to be informed.” (P4, FG1) Providers of education “An IBD nurse… rang me each week and chatted to me, and asked how I was going… Just that extra support there... the nurse has the time to chat to me if I have any questions and that sort of thing.” (P8, FG3) Timing of education “At the beginning… you’re given a couple of pamphlets, or you’re told a little bit and that’s it and [you] go off and you’re kind of overwhelmed! It would be nice to have… a call the next day… when you're full of questions and trying to figure out what's going on!” (P29, FG9) Effective education “The other thing about education is consistent messages.” (P25, FG8) IBD and management “I’m still sort of struggling to know what I really shouldn't be eating and maybe what I should be eating… it's always better when you talk to someone… they have some insights that you may not be able to get out of the book yourself.” (P23, FG7) Psychological health “The prevalence of mental health concerns and issues related to IBD… something that I never had heard of before. I thought, wow if someone told me that… that would have made me feel a little bit more normal, where I was at the time, what I was going through.” (P19, FG3) Health promotion “So, education, scene setting, even just you know, talking about what you need to fit into your life when you have a chronic illness… medication, sleep um, you know, other things that all contribute to you having, I guess, a good baseline health, so that you can deal with whatever is coming your way. That sort of thing is I think helpful.” (P4, FG1) Social Connection Benefits of connection “ Support just in an online forum for other people with IBD helps me realize I'm not too bad... To hear that other people have it and may have it worse – not that you’d wish that on anybody – but to just hear what other people's stories are, makes you feel a bit more okay. A lot of people are dealing with this, not just me… it's nice to have that connection.” (P29, FG9) Formal social supports “ One of the interventions that I think could be useful… is a mentoring relationship.” (P25, FG8) Informal social supports “Definitely family support, like you know, friend support… makes a huge difference.” (P1, FG6) Peer support worker qualities “As long as the peer supporter is well, living with the illness, well as best they can… promoting wellness and things like that, to the guidelines.” (P28, FG8) Frequency of social support “I'd love to do some type of… monthly peer support catch-up or something... I know life is busy, you might not be able to get to every month… but that would be good.” (P12, FG2) Psychological Input Benefits of psychological input “J ust to have someone who has that understanding to talk through everything with you. And to yeah, I guess someone to help follow your journey with you... because that was a lot to take in when you have little to no understanding... To help process everything.” (P22, FG4) Key times for psychological input “Probably at diagnosis would be an important time, because you have to accept that you have a lifelong illness and a chronic illness. And I think, having someone to talk through that with you is important.” (P14, FG2) Key treatment targets “It gets kind of embarrassing like, because I have some changes down there that I haven't felt comfortable with being intimate with anyone for quite a while. So, I guess you know, learning to deal with that or learning to accept that has been challenging…” (P11, FG3) Clinician qualities “I think that's really important – to have the knowledge of the medical side of things, and then, like you can specialize your psychological treatment according to that.” (P, FG) Interventions and approaches “Pain management through hypno(therapy), yeah hypno I had done, and that's been very helpful.” (P1, FG6) Frequency of input “It doesn't need to be very regular sessions either… once a month.” (P3, FG1) Accessible Services Available “I think availability, for you know, if you need to ring someone out to talk to them.” (P21, FG6) Affordable “My first thought was free clinical psychology services!” (P15, FG4) Setting “As long as it's sort of like where you go for your treatment. It would be better for the people so they’re not traveling here there and everywhere.” (P10, FG1) Various delivery Formats “But any kind of telehealth service… I think we, you know, in lockdowns we’re sort of used to… dialing into calls like this... So, I'm not too fussed how it's delivered, as long as there’s someone on the end of the phone or at the end of a video call!” (P3, FG1) Credible resources “Information like those should be aggregated at some place, which will help other people definitely.” (P2, FG1) Family members “I think for me, a gold standard would also include my partner because he watches… he has no idea how to help me. And… he can't help, there's nothing he can do in those darker times... So, I think some information and just some support for your partner.” (P13, FG4) Promotion and awareness “So, I feel more promotion of the resources, if they were to be created... more availability or promotion of them is important as well.” (P14, FG2) Note – P refers to participant number and FG to focus group number. Additional Declarations No competing interests reported. Supplementary Files ESM1January2024.docx ESM2January2024.docx ESM3January2024.docx ESM4January2024.docx ESM5January2024.docx OnlineAbstractFigureJanuary2024.jpg Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 31 Jan, 2024 Reviews received at journal 24 Jan, 2024 Reviewers agreed at journal 16 Jan, 2024 Reviewers invited by journal 15 Jan, 2024 Editor assigned by journal 09 Jan, 2024 Submission checks completed at journal 06 Jan, 2024 First submitted to journal 06 Jan, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3838848","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":265576697,"identity":"0541bbb7-1bbf-481e-976d-3b466f67e89f","order_by":0,"name":"Taryn Lores","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA2ElEQVRIie2OvwqCUBSHj1y4LrfdxXcQLkSD1Kskgq1BS6MQ6FK56lvYE3ThgG25Cu62CkE0CHVzjPDP1nA/OOf8hvNxDoBC8Y/obbc1HygImWTogZF2eOMVbBUYpCwIyeq6yc1Izxxcg22mglRG9xXqJklQ8mTvCYzB46mg0x6FcTLxSycVKx8ZoAwwQGmaq3PObx/lJRX90a8AFU5qyMcYyCBYzxWkrnYIXB4X1RKZ5fIE2WbWpejhDuHZzM0o8vidbefm8RKeii7lC0sWGbGvUCgUit+8Af5FSNjyDLEHAAAAAElFTkSuQmCC","orcid":"","institution":"Deakin University","correspondingAuthor":true,"prefix":"","firstName":"Taryn","middleName":"","lastName":"Lores","suffix":""},{"id":265576698,"identity":"a930fc13-6ce8-4212-be62-2d52f8cf2060","order_by":1,"name":"Antonina Mikocka-Walus","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"Antonina","middleName":"","lastName":"Mikocka-Walus","suffix":""},{"id":265576699,"identity":"7ce4761c-43ad-48ee-9991-d02a98f17460","order_by":2,"name":"Jane M Andrews","email":"","orcid":"","institution":"Central Adelaide Local Health Network","correspondingAuthor":false,"prefix":"","firstName":"Jane","middleName":"M","lastName":"Andrews","suffix":""},{"id":265576700,"identity":"0573b69d-a46c-4d1e-b449-c04bf93f37ee","order_by":3,"name":"A /Prof Subhadra Evans","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"A","middleName":"/Prof Subhadra","lastName":"Evans","suffix":""},{"id":265576701,"identity":"775909b1-c8b2-433c-8b3e-ebe4a9de81eb","order_by":4,"name":"Kate D Lynch","email":"","orcid":"","institution":"Royal Adelaide Hospital","correspondingAuthor":false,"prefix":"","firstName":"Kate","middleName":"D","lastName":"Lynch","suffix":""},{"id":265576702,"identity":"82623140-2203-4094-a46f-b8474dee1c60","order_by":5,"name":"Anna Chur-Hansen","email":"","orcid":"","institution":"University of Adelaide","correspondingAuthor":false,"prefix":"","firstName":"Anna","middleName":"","lastName":"Chur-Hansen","suffix":""}],"badges":[],"createdAt":"2024-01-06 05:14:14","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3838848/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3838848/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":49382774,"identity":"7ba98e13-dbaa-4592-a11a-a276f2348908","added_by":"auto","created_at":"2024-01-09 19:30:40","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":670471,"visible":true,"origin":"","legend":"\u003cp\u003eOverarching categories and sub-categories with associated participant frequencies \u003cem\u003en\u003c/em\u003e (%). \u003cem\u003eNote\u003c/em\u003e. Frequency refers to number of participants whose comments contributed to the identified category or sub-category, with percentage based on total across all focus groups (\u003cem\u003eN\u003c/em\u003e=30).\u003c/p\u003e","description":"","filename":"Figures.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3838848/v1/41c348e1d73a591f47f82d34.jpg"},{"id":49384477,"identity":"c619d7c4-769b-4c07-afdf-816e648ddc66","added_by":"auto","created_at":"2024-01-09 19:46:41","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":486975,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3838848/v1/40b7438a-74a8-47b1-8bb1-0cc5117a1944.pdf"},{"id":49382776,"identity":"59921d79-e78b-4cb5-8058-7f378d61e235","added_by":"auto","created_at":"2024-01-09 19:30:40","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":47303,"visible":true,"origin":"","legend":"","description":"","filename":"ESM1January2024.docx","url":"https://assets-eu.researchsquare.com/files/rs-3838848/v1/63b704ee376f92121a2325ef.docx"},{"id":49382952,"identity":"b610747a-0aa3-40e8-89d9-e861ccbcc7ef","added_by":"auto","created_at":"2024-01-09 19:38:40","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":38661,"visible":true,"origin":"","legend":"","description":"","filename":"ESM2January2024.docx","url":"https://assets-eu.researchsquare.com/files/rs-3838848/v1/05dfd4b00086c35d87b85110.docx"},{"id":49382777,"identity":"6e469f40-535c-427e-bd39-cb5f6ded0c22","added_by":"auto","created_at":"2024-01-09 19:30:40","extension":"docx","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":38038,"visible":true,"origin":"","legend":"","description":"","filename":"ESM3January2024.docx","url":"https://assets-eu.researchsquare.com/files/rs-3838848/v1/35148113c28ba39741d3c275.docx"},{"id":49382780,"identity":"bf2c307b-f340-483c-b5d8-ff6bb5706bb5","added_by":"auto","created_at":"2024-01-09 19:30:40","extension":"docx","order_by":4,"title":"","display":"","copyAsset":false,"role":"supplement","size":76546,"visible":true,"origin":"","legend":"","description":"","filename":"ESM4January2024.docx","url":"https://assets-eu.researchsquare.com/files/rs-3838848/v1/3259b8d226804477fb776854.docx"},{"id":49382778,"identity":"dd89f11e-3b02-4b91-9321-747c1f01ad6d","added_by":"auto","created_at":"2024-01-09 19:30:40","extension":"docx","order_by":5,"title":"","display":"","copyAsset":false,"role":"supplement","size":45241,"visible":true,"origin":"","legend":"","description":"","filename":"ESM5January2024.docx","url":"https://assets-eu.researchsquare.com/files/rs-3838848/v1/09370965492a623cb941f42d.docx"},{"id":49382953,"identity":"a5634463-abef-42f6-9616-8f765845fb81","added_by":"auto","created_at":"2024-01-09 19:38:40","extension":"jpg","order_by":7,"title":"","display":"","copyAsset":false,"role":"supplement","size":171122,"visible":true,"origin":"","legend":"","description":"","filename":"OnlineAbstractFigureJanuary2024.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3838848/v1/6a28b54e9d05b944425f7f9f.jpg"}],"financialInterests":"No competing interests reported.","formattedTitle":"Psychological services for people with Inflammatory Bowel Diseases: Care co-designed by consumers","fulltext":[{"header":"Introduction","content":"\u003cp\u003eInflammatory Bowel Diseases (IBD) such as Crohn\u0026rsquo;s disease (CD) and ulcerative colitis (UC) can profoundly affect a person\u0026rsquo;s quality of life[1]. Symptoms such as diarrhoea, urgency, pain and fatigue are chronic and can hinder daily functioning. Psychological problems like anxiety and depression are highly prevalent[1]. Other common psychosocial issues include trauma, body dissatisfaction, disordered eating, social isolation and sexual dysfunction[2, 3]. Additionally, psychosocial problems are associated with greater healthcare burden and increased disability in IBD[4, 5].\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIBD is best managed with a broad, multidisciplinary approach[6]. Where integrated, psychological care has been associated with reduced healthcare use, increased treatment adherence and improved mental health and quality of life[4, 7]. However, psychological care is often absent from IBD care settings[8-10]. Recent research has highlighted a desire for greater recognition of psychological concerns[11], more mental health discussion with IBD clinicians[8]\u0026nbsp;and increased access to treatment options[12].\u003c/p\u003e\n\u003cp\u003eTo improve IBD healthcare, psychological services and supports need to be developed. However, the specific preferences and priorities of IBD consumers for these services are unknown. The current study aimed to qualitatively explore the views of people living with IBD regarding what is most important in an IBD-specific psychological service. The results will inform proposed guidelines that can be used by IBD teams to co-design high-quality, targeted IBD psychological services for their consumers.\u0026nbsp;\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cem\u003eParticipants and Recruitment\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants were adults with a diagnosis of IBD (CD, UC or IBD-unspecified [IBD-U]) living in Australia. The study was advertised by two South Australian public hospital IBD services and patient advocacy organization Crohn\u0026rsquo;s and Colitis Australia via social media platforms and email. The Principal Investigator (TL) conducted eligibility screening by telephone. Participants were offered an AUD$25 voucher for their time (funded via TL\u0026rsquo;s higher degree research [HDR]).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eData Collection\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cu\u003eBackground survey\u003c/u\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants completed a brief questionnaire via online survey tool Qualtrics to collect demographic, clinical and psychological care data.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cu\u003eFocus groups\u003c/u\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFocus groups were chosen as the qualitative data collection method as facilitation of participant interaction and discussion allows for in-depth exploration. Groups were held virtually using the telehealth platform Zoom. Discussions were audio recorded and transcribed. The focus groups were facilitated by TL \u0026ndash; a trained and experienced cisgendered female health psychologist (\u003cem\u003eM. Psych Health\u003c/em\u003e) who had no prior relationship to participants. Participants were informed TL worked in the IBD field and the study would contribute to HDR. Ten groups were held between October 2022 and April 2023 comprising a total of 30 participants (each group averaging three) and lasting 50-110 minutes. Discussions centered around an initial open question with prompts used as needed. The guide was pilot-tested with two authors (AC-H, SE)\u0026nbsp;\u0026ndash; see\u0026nbsp;\u003cem\u003eOnline Resource 1\u003c/em\u003e for the general structure.\u0026nbsp;Data analysis commenced with the first transcription and continued until no new categories were identified (i.e., theoretical data saturation). A draft results summary was prepared after the sixth focus group and was reviewed by the final four groups. Participants\u0026nbsp;were given an opportunity to review the transcripts after attendance.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cu\u003eConsumer review\u0026nbsp;\u003c/u\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe final participant recruited (P31) was invited to review a one-page outline of the result categories. Feedback was discussed during two virtual interviews.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAnalysis\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eConventional/inductive content analysis[13] was used by TL (single coder) to analyze the data. TL familiarized herself with the transcripts and reviewed these for key words. Data were broken down into initial codes and classed into sub-categories and then over-arching categories using software program Nvivo. Code names were derived from the data. An audit trail was kept recording progression of data collection and analysis. A quantitative dataset of code frequencies by group, individual and overall was created. Two authors (AC-H, SE) each reviewed 20% of the data after analysis of six focus groups. All authors approved the results.\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eParticipant Sample\u003c/h2\u003e \u003cp\u003eFifty potential participants registered interest and were contacted: of these, eight were lost to follow-up, seven were deemed ineligible (e.g., no IBD diagnosis) and one withdrew. The remaining 34 eligible participants provided written consent. Three dropped out before focus group participation (n\u0026thinsp;=\u0026thinsp;2 no response, n\u0026thinsp;=\u0026thinsp;1 no suitable time).\u003c/p\u003e \u003cp\u003eThe final participant sample (N\u0026thinsp;=\u0026thinsp;31) comprised 10 men and 21 women (68%) aged between 21 and 80 years (median\u0026thinsp;=\u0026thinsp;46 years, IQR\u0026thinsp;=\u0026thinsp;24), most from South Australia (84%). Sixteen had CD and 15 had UC. Disease duration ranged from one to 54 years (median\u0026thinsp;=\u0026thinsp;7 years, IQR\u0026thinsp;=\u0026thinsp;13). Twenty participants (65%) were in remission and 19 (61%) received IBD care in a public hospital setting. Most reported typically never being asked about mental health by their IBD clinician (71%), wanting to be asked more frequently (81%), and not having have access to psychological care in their IBD setting (84%). Ten participants (32%) were currently participating in psychological care, eight (26%) had previously and 13 (42%) had no experience. \u003cem\u003eOnline Resource 2\u003c/em\u003e summarizes all participant characteristics and \u003cem\u003eOnline Resource 3\u003c/em\u003e participants\u0026rsquo; experience with psychological care.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eIBD Psychological Care\u003c/h2\u003e \u003cp\u003eThe analysis identified 254 codes, 38 sub-categories and six overarching categories. A complete list of codes, sub-categories and categories with associated frequencies is provided in \u003cem\u003eOnline Resource 4\u003c/em\u003e. Five main categories described what is most wanted in an IBD-specific psychological service: 1) \u003cem\u003ePeople-Centered Healthcare\u003c/em\u003e, 2) \u003cem\u003eEducation and Preparation\u003c/em\u003e, 3) \u003cem\u003eSocial Connection\u003c/em\u003e, 4) \u003cem\u003ePsychological Input\u003c/em\u003e, and 5) \u003cem\u003eAccessible Services\u003c/em\u003e. An additional sixth category was identified to summarize codes about psychologically unsupportive care: 6) \u003cem\u003ePsychologically Unsupportive\u003c/em\u003e. Figure\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e illustrates the key categories and sub-categories. \u003cem\u003eTable\u0026nbsp;1\u003c/em\u003e sets out illustrative quotes for the main categories and sub-categories.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003ePeople-Centered Healthcare\u003c/h2\u003e \u003cp\u003eIn discussing what constitutes a \u0026ldquo;gold standard\u0026rdquo; IBD psychological service, twenty-seven participants referred to the need for healthcare to be more people-Centered. For example, 21 (70%) stated the IBD service would ideally be multidisciplinary and include a psychologist, a dietitian and dedicated nursing staff. Seventeen (56%) wanted to see a broader range of health needs addressed, such as mental health, diet, and comorbid functional symptoms: \u0026ldquo;\u003cem\u003ethere are other aspects of this disease that affect your health in other ways\u0026hellip;\u0026rdquo;\u003c/em\u003e (P11, FG3). Fourteen participants (47%) mentioned addressing psychological needs directly, with eight suggesting a standard early assessment: \u0026ldquo;\u003cem\u003enot everybody needs psychological intervention, but I think the service should definitely be offered and be part of the diagnosis program, I mean, without option\u0026rdquo;\u003c/em\u003e (P24, FG7).\u003c/p\u003e \u003cp\u003ePeople-Centered healthcare also referred to factors that are indirectly supportive. Eleven participants (37%) highlighted the importance of clinicians being experts in IBD and knowledgeable in common comorbid issues (such as mental health). A compassionate approach was mentioned as crucial by 14 (47%): \u0026ldquo;\u003cem\u003eI just would have liked to have had a kind word at the beginning\u0026rdquo;\u003c/em\u003e (P27, FG8). Fifteen (50%) wanted greater consideration of individual factors such as age and gender. Better collaboration between clinicians, as well as between services, would likely reduce unnecessary stress (n\u0026thinsp;=\u0026thinsp;12, 40%). Four participants (13%) even raised the value of ongoing research, to ensure IBD management continues to advance.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eEducation and Preparation\u003c/h2\u003e \u003cp\u003eTwenty-five participants (83%) described education as a type of psychological service. Fifteen (50%) discussed benefits, including sufficient information and preparation, reduced anxiety, and empowerment. Three participants commented specifically that education is therapeutic: \u0026ldquo;\u003cem\u003eeven though it's like it's not meant to be psychological support, it does provide psychological support, because we feel that we are listened [to]\u0026hellip; and that someone is actually on top of it\u0026rdquo;\u003c/em\u003e (P1, FG6). Ten (33%) wanted education to be provided by multiple clinicians, not just their IBD doctor (e.g. [re IBD nurses] \u003cem\u003e\u0026ldquo;\u0026hellip;they are good, you know, in killing your anxiety\u003c/em\u003e\u0026rdquo; P9, FG6).\u003c/p\u003e \u003cp\u003eEight participants (27%) reported that education is particularly vital at diagnosis, when IBD is most unfamiliar. Twenty (67%) said more information on IBD is required: \u0026ldquo;\u003cem\u003ehaving a way of when people have been newly diagnosed\u0026hellip; providing the right level of education\u0026hellip; A proper baseline amount of information about the condition\u0026rdquo;\u003c/em\u003e (P4, FG1). IBD medications and side-effects, coping strategies, surgery, complications and diet were also identified as needing greater explanation. Psychological health and health promotion were mentioned by seven (23%) and nine participants (30%) respectively, as topics where further education is desired.\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section3\"\u003e \u003ch2\u003eSocial Connection\u003c/h2\u003e \u003cp\u003eMost participants (n\u0026thinsp;=\u0026thinsp;25, 83%) talked about the ideal psychological service facilitating social connection. Benefits discussed by 18 (60%) included belonging, relatability, sharing of ideas, reassurance and hope; for example: \u003cem\u003e\u0026ldquo;It\u0026rsquo;s a very lonely journey\u0026hellip; you really feel you\u0026rsquo;re running your own race\u0026hellip; People who've got lived experience with Crohn\u0026rsquo;s should always be connected\u0026hellip; so you can feel that you're not just going on this journey alone\u0026rdquo;\u003c/em\u003e (P3, FG1). Fifteen participants (50%) mentioned the usefulness of informal supports, such as family and friends, lived experience stories, and consumer gatherings: \u0026ldquo;\u003cem\u003eit was a meet-and-greet, you know, coffee and a bit of food. It was more like an enjoyable meet\u003c/em\u003e\u0026rdquo; (P27, FG8). Formal service ideas were provided by 12 (40%) and included peer advice, activity groups, social prescription, and mentoring: \u003cem\u003e\u0026ldquo;a peer support group\u0026hellip; can help make connections and have that sort of sense of community\u0026rdquo;\u003c/em\u003e (P18, FG5). One participant also listed key qualities for a peer support worker, such as living well with IBD, being knowledgeable and providing hope.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003ePsychological Input\u003c/h2\u003e \u003cp\u003eMost participants (n\u0026thinsp;=\u0026thinsp;28, 93%) commented on psychological input. Eleven (37%) listed benefits such as having someone to talk to, reducing distress, receiving emotional validation, and learning practical coping tools. One referenced her own experience: \u003cem\u003e\u0026ldquo;I think being able to talk to someone in a non-judgmental space about something that\u0026hellip; is pretty embarrassing. It's just really good\u0026hellip; the psychologist that I spoke to just had a way of making it all okay and just comfortable. And I just felt safe\u0026hellip; being able to talk really frankly with someone about all the nitty, gritty, yucky details\u0026rdquo;\u003c/em\u003e (P19, FG3). Eighteen (60%) highlighted critical times for psychological input, most notably at diagnosis, acute disease flares and surgery; four also pointed out that it is important any time it is wanted and needed.\u003c/p\u003e \u003cp\u003ePsychological treatment targets were mentioned by 25 participants (83%). Examples of psychological issues included anxiety, stress, depression, adjustment, embarrassment, body dissatisfaction, trauma, coping and outlook: \u003cem\u003e\u0026ldquo;I think positive thinking has a lot to do with how you cope\u0026rdquo;\u003c/em\u003e (P17, FG2). Social targets were communication, social limitations and intimacy and relationships. IBD concerns included managing symptoms, surgery, medications and uncertainty. One participant illustrated the importance of psychological input when describing her experience in hospital: \u0026ldquo;\u003cem\u003eWhen you're in hospital and feeling scared and afraid and not sure about the future, I think it would be helpful to have like a psychologist come in and talk to you. And when you're going through those surgeries and that, because it\u0026rsquo;s quite traumatic\u0026hellip; Looking back to that moment, I was really scared\u0026hellip; there was no psychological support, and I feel like that's really needed\u0026rdquo;\u003c/em\u003e (P14, FG2).\u003c/p\u003e \u003cp\u003eNine participants (30%) outlined the positive qualities they would like in a psychologist, including empathy and being a companion on the journey: \u0026ldquo;\u0026hellip;\u003cem\u003eempathize and help people process this whole new world of Crohn\u0026rsquo;s and IBD\u0026hellip; help you navigate your own journey, holding your hand\u0026rdquo;\u003c/em\u003e (P15, FG4). IBD knowledge was also preferred: \u0026ldquo;\u003cem\u003ewith the trauma that some people have been through\u0026hellip; you really want someone that can relate to you \u0026ndash; maybe not from lived experience, but from at least knowledge of the medical side\u0026rdquo;\u003c/em\u003e (P6, FG3). Nine (30%) showed an awareness of types of psychological interventions. The intervention mentioned most was hypnotherapy (n\u0026thinsp;=\u0026thinsp;4, 13%). Pastoral care and exercise were also noted as psychologically supportive approaches by two and one participant/s, respectively.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eAccessible Services\u003c/h2\u003e \u003cp\u003eAll but one participant made comment/s on service accessibility (97%). Accessibility included greater availability of clinicians (n\u0026thinsp;=\u0026thinsp;12, 40%). The most desired setting for psychological care was integrated within the IBD team (n\u0026thinsp;=\u0026thinsp;9, 30%), although one participant advocated for an external location. Twenty (67%) listed a variety of delivery formats such as face-to-face, phone, telehealth, online and via email, to cater to a variety of needs and preferences. Eight participants (27%) commented that IBD psychological services should be complemented with credible resources via consumer events, videos and written materials. Thirteen (43%) highlighted the importance of partners and family members also accessing psychological services: \u003cem\u003e\u0026ldquo;psychological help for my wife and my children, and even further back in the early days, for my parents, would be a fantastic thought... a very, very good thing\u0026rdquo;\u003c/em\u003e (P16, FG2). Seven (26%) also emphasized the need for services to be promoted widely, so that people know what is offered and how it can be accessed.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003ePsychologically Unsupportive\u003c/h2\u003e \u003cp\u003eA sixth overarching category summarized what participants found to be unhelpful for mental and emotional wellbeing. Sub-categories reflected the reverse of the abovementioned five categories (e.g., poor education, unhelpful peer support, barriers to access) \u0026ndash; see \u003cem\u003eOnline Resource 4.\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eConsumer Review\u003c/h2\u003e \u003cp\u003eThe expert consumer\u0026rsquo;s review of the results was confirmatory. The importance of each category was reinforced, as well as the topic of IBD psychological care: \u0026ldquo;\u003cem\u003eThe clinician who's looking at this, they need to realize it's a duty of care\u0026hellip; It's really important\u0026hellip; for that gastro or that head person to lead the way on making sure that psychological services are put into their care\u0026hellip; It\u0026rsquo;s pertinent on someone\u0026rsquo;s health, it\u0026rsquo;s huge actually!\u003c/em\u003e\u0026rdquo; (P31). The consumer provided specific feedback and suggestions for drafting the clinical guidelines. The consumer queried whether the first category \u003cem\u003ePeople-Centered Healthcare\u003c/em\u003e should be split into two, noting several sub-categories refer to consumers while others relate to clinicians. After discussion with co-authors, the category was kept intact as it was thought the sub-categories were still related.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eClinical recommendations\u003c/h2\u003e \u003cp\u003e\u003cem\u003eOnline Resource 5\u003c/em\u003e provides an overview of recommendations for IBD clinical care in the form of proposed clinical practice guidelines.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis qualitative study is the first to explore the priorities of IBD consumers with respect to tailored psychological services for the purpose of co-design. The findings highlight clear themes for the types of services desired by people with IBD, as well as care structures and delivery mechanisms that support psychological health. In this study, participants were asked about the ideal, perfect or \u0026ldquo;gold-standard\u0026rdquo; IBD psychological service, and the results emphasize the value of broader care components beyond individual psychological therapy.\u003c/p\u003e \u003cp\u003eThree of the overarching categories referred specifically to interventions: \u003cem\u003eEducation and Preparation\u003c/em\u003e, \u003cem\u003eSocial Connection\u003c/em\u003e and \u003cem\u003ePsychological Input\u003c/em\u003e. These services have the potential to improve psychological wellbeing in different ways. For example, education improves consumer knowledge and understanding, which have been associated with higher levels of self-efficacy, medication adherence and treatment engagement[\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. In IBD, education has also been found to reduce psychological distress and improve self-management and coping[\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Education has the potential to reduce the psychological burden of IBD.\u003c/p\u003e \u003cp\u003eSocial connection is psychologically helpful because it offers people with IBD various emotional, practical and informational supports. The importance of peer connection is not surprising, as it is well-established that relationships and connectedness are protective for both mental and physical health[\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. In contrast, loneliness and isolation are risk factors for anxiety and depression, elevated inflammation and mortality[\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Of note, informal social interactions (e.g., support from family and friends) were mentioned by more participants than formal activities. Thus, as a service, social connection may be about exploring and reinforcing use of a person\u0026rsquo;s current social network, or it may involve more deliberate referral to structured peer supports.\u003c/p\u003e \u003cp\u003ePsychological input has the potential to directly improve mental health for IBD consumers by reducing distress and increasing coping. The growing literature on psychological interventions in IBD shows short-term improvements in mood and anxiety and more consistent benefits for quality of life[\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. While some of the input discussed by participants could be provided by other IBD clinicians (e.g., \u0026ldquo;\u003cem\u003ebeing able to talk really frankly with someone about all the nitty, gritty, yucky details\u0026rdquo;\u003c/em\u003e [P19, FG3]), the overall desire was for a dedicated IBD psychologist or mental health provider. Psychological intervention can treat IBD-related distress, and (as recognized by some participants) support self-management and health promotion which are important for those living with a chronic illness.\u003c/p\u003e \u003cp\u003eThe other two main categories referred to the structure and delivery of health services: \u003cem\u003ePeople-Centered Healthcare\u003c/em\u003e and \u003cem\u003eAccessible Services\u003c/em\u003e. The message underpinning people-Centered healthcare is that there are certain clinician qualities and healthcare practices that promote emotional and mental wellbeing. While past research is mixed, some evidence suggests that people-Centered care is associated with greater treatment satisfaction and self-management[\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. When people are cared for by a multidisciplinary team of knowledgeable clinicians in a holistic, collaborative and compassionate manner, it makes sense that they would feel more psychologically supported.\u003c/p\u003e \u003cp\u003eMaking services and interventions accessible is also important. Only 16% of study participants reported current access to psychological care in their IBD setting, consistent with past research[\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Of note, nearly half (42%) raised access for family members and partners \u0026ndash; this is in line with a recent systematic review which identified the need for greater education, social support and mental health input for IBD carers[\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThis study\u0026rsquo;s findings are consistent with recent research. For example, a review of the UK national IBD standards[\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e] highlighted the need for greater education, holistic care, access and multidisciplinary services. They also identified a desire for more educational programs, resources, communication between IBD services and external providers, and support with mental health. Another study of consumers in the UK and Australia[\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e] identified three similar themes: vicious cycle of IBD and psychosocial health, the need for biopsychosocial health integration and stigma of hidden disease. Further, a Scottish co-design study found three themes important for improving IBD care: quality of life, IBD clinicians and better access, and explicit IBD care pathways[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. The closeness of our findings with these studies investigating IBD care more broadly (i.e., not psychological services specifically) is particularly telling: it emphasizes the importance of care quality for psychological health and wellbeing.\u003c/p\u003e \u003cp\u003eIn addition, there are parallels between this study\u0026rsquo;s results and current published IBD quality of care standards. For example, the Australian IBD Standards[\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e] include having multidisciplinary care, a people-Centered approach and education. The presence of a psychologist and early psychological assessment are also consistent with UK IBD Standards[\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Further, the findings are in line with the priorities of The Australian National Action Plan for IBD 2019[\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. For instance, \u003cem\u003ePeople-Centered Healthcare\u003c/em\u003e is consistent with the priority area of a skilled and accessible multidisciplinary workforce. \u003cem\u003eAccessible Services\u003c/em\u003e has several sub-categories in common with the priority area access to responsive IBD helplines. Finally, \u003cem\u003eEducation and Preparation\u003c/em\u003e aligns with the priority area patient knowledge.\u003c/p\u003e \u003cp\u003eUltimately, the aim of the current study was to ascertain the priorities and preferences of people living with IBD for psychological care to inform the co-design of future services. The proposed set of clinical practice guidelines (\u003cem\u003eOnline Resource 5\u003c/em\u003e) includes improving and/or incorporating the three interventions into IBD management and restructuring or refining practices and delivery mechanisms. It is hoped that IBD services will review these guidelines and work towards adopting the recommendations over time. For example, new care settings could use these guidelines to inform service design, while existing services could use them for improvement initiatives and business cases.\u003c/p\u003e \u003cp\u003eThe main limitation of this study is the potential for bias. However, multiple strategies were used to minimize this risk, including pilot testing the focus group guide, code checking by two additional authors and results review by participants. Participants were self-selected and mostly from one Australian state, but their views are likely transferable given the similarities with other data sources. Future research may include IBD service audits or consumer surveys to compare current practices with the proposed guidelines to determine development priorities. Services that currently incorporate psychological care might qualitatively explore consumers\u0026rsquo; experiences to gain insight into specific benefits and challenges. Further development of the proposed clinical guidelines is also recommended.\u003c/p\u003e \u003cp\u003eIn conclusion, this study provides valuable insights from people living with IBD and clinical recommendations for co-designing services that better address psychological health and wellbeing. Specifically, IBD services should emphasize consumer education, social connection and psychological input. Beyond this, IBD services should work towards becoming more people-Centered and accessible. It is hoped that the proposed guidelines will be used by IBD clinicians to better support the psychological health of IBD consumers.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe would like to thank all the participants who volunteered their time to participate in this important study and for their openness and vulnerability in sharing their experiences and ideas. Thank you also to Crohn\u0026rsquo;s and Colitis Australia and The Queen Elizabeth Hospital IBD Service for promoting the research widely. \u0026nbsp;This work was supported by higher Degree Research funding provided by Deakin University for participant reimbursement.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEthics Approval\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis study was approved by the Human Research Ethics Committees (HREC) of the Central Adelaide Local Health Network (CALHN; Ref#1660) and Deakin University (DUHREC Ref#2022-236).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent to Participate\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAll participants provided written informed consent to participate in this study.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eData Availability Statement\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe data underlying this article cannot be shared publicly due to participant privacy. \u0026nbsp;The data will be shared on reasonable request to the corresponding author.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis work was supported by Higher Degree Research funding provided by Deakin University for participant reimbursement.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; Contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTL: conceptualization (lead); data curation (lead); formal analysis (lead); funding acquisition (lead); investigation (lead); methodology (equal); project administration (lead); visualization (lead); writing \u0026ndash; original draft preparation (lead); writing \u0026ndash; review and editing (lead).\u003c/p\u003e\n\u003cp\u003eAM-W: conceptualization (supporting); funding acquisition (supporting); methodology (equal); supervision (supporting); writing \u0026ndash; review and editing (supporting).\u003c/p\u003e\n\u003cp\u003eSE: conceptualization (supporting); data curation (supporting); formal analysis (supporting); methodology (supporting); supervision (supporting); writing \u0026ndash; review and editing (supporting).\u003c/p\u003e\n\u003cp\u003eJA: conceptualization (supporting); methodology (supporting); writing \u0026ndash; review and editing (supporting).\u003c/p\u003e\n\u003cp\u003eKL: conceptualization (supporting); methodology (supporting); writing \u0026ndash; review and editing (supporting).\u003c/p\u003e\n\u003cp\u003eAC-H: conceptualization (supporting); data curation (supporting); formal analysis (supporting); methodology (equal); project administration (supporting); supervision (lead); writing \u0026ndash; original draft preparation (supporting); writing \u0026ndash; review and editing (supporting).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflicts of Interest / Financial Disclosures\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTL: declares speaker\u0026rsquo;s fees from Mindset Health\u003c/p\u003e\n\u003cp\u003eAC-H, SE, AM-W: all declare nil conflicts of interest\u003c/p\u003e\n\u003cp\u003eKL:\u0026nbsp;declares speaker\u0026rsquo;s fees, advisory Board fees, and/or conference travel/registration support from:\u0026nbsp;Abbvie, Bristol Myers Squibb, Chiesi, Dr Falk, Ferring, Gilead, Guidepoint, Intercept Pharmaceuticals, Janssen-Cilag, MSD, Norgine, Pfizer, Sandoz, Takeda, the RAH Research Fund\u003c/p\u003e\n\u003cp\u003eJMA:\u0026nbsp;declares speaker\u0026rsquo;s fees, advisory Board fees and educational/research grants paid to her institution from:\u0026nbsp;Abbott, AbbVie, Allergan,\u0026nbsp;Anatara, AstraZeneca, Bayer, BMS 2020,\u0026nbsp;Celegene,\u0026nbsp;Celltrion, Falk, Ferring, Gilead, Hospira,\u0026nbsp;Immuninc,\u0026nbsp;ImmunsanT, Janssen, MSD, Nestle, Novartis, Pfizer, Sandoz, Shire, Takeda,\u0026nbsp;Vifor, RAH research Fund, The Hospital Research Fund 2020-2022, The Helmsley Trust 2020-2023.\u003c/p\u003e\n\u003cp\u003eTL, AC-H, SE, AM-W, LR and JMA all declare that they have no conflicts of interest or financial disclosures for this research.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eBarberio B, Zamani M, Black C, Savarino E, Ford A. 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Soc Personal Psychol Compass 2014;8(2):58\u0026ndash;72. doi:\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1111/spc3.12087\u003c/span\u003e\u003cspan address=\"10.1111/spc3.12087\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGracie D, Irvine A, Sood R, Mikocka-Walus A, Hamlin P, Ford A. Effect of psychological therapy on disease activity, psychological comorbidity, and quality of life in inflammatory bowel disease: A systematic review and meta-analysis. Lancet Gastroenterology and Hepatology 2017;2doi:\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/S2468-1253(16)30206-0\u003c/span\u003e\u003cspan address=\"10.1016/S2468-1253(16)30206-0\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRathert C, Wyrwich M, Boren S. Patient-centred care and outcomes: A systematic review of the literature. Med Care Res Rev 2013;70(4):351\u0026ndash;379. doi:\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1177/1077558712465774\u003c/span\u003e\u003cspan address=\"10.1177/1077558712465774\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eThapwong P, Norton C, Rowland E, Farah N, Czuber-Dochan W. A systematic review of the impact of Inflammatory Bowel Disease (IBD) on family members. Journal of Clinical Nursing 2023;32(9\u0026ndash;10):2228\u0026ndash;2238. doi:\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1111/jocn.16446\u003c/span\u003e\u003cspan address=\"10.1111/jocn.16446\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKapasi R, Glatter J, Lamb C, al. e. IBD standards core statements. Frontline Gastroenterol 2020;11:178\u0026ndash;187. doi:\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1136/flgastro-2019-101260\u003c/span\u003e\u003cspan address=\"10.1136/flgastro-2019-101260\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCommonwealth of Australia Department of Health. Inflammatory Bowel Disease National Action Plan 2019. 2019.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"936\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"100%\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cstrong\u003eTable 1.\u003c/strong\u003e Illustrative quotations for IBD psychological care over-arching categories and sub-categories.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003eCategory\u003c/u\u003e\u003c/strong\u003e Sub-category\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cstrong\u003eIllustrative quotations\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"100%\" colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003ePeople-Centered Healthcare\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eMultidisciplinary\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eteam / care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I think it\u0026apos;d be nice to have like\u0026hellip; a dedicated place where maybe they did\u0026hellip; all these other things together\u0026hellip; counselling, group therapy, a dietitian, you know\u0026hellip; A whole center for IBD where there was like\u0026hellip; different clinicians doing different treatments.\u0026rdquo; (P11, FG3)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eHolistic model of healthcare\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So, to me it should be more of an awareness that when you first get it you should be able to see like a clinical nurse or someone\u0026hellip; that can look at other areas and maybe say to you \u0026lsquo;you know, you could go here, or you could go there, or there\u0026apos;s this available\u0026hellip;\u0026rsquo;\u0026rdquo; (P27, FG8)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003ePsychological awareness and action\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;The gastroenterologist needs to be able to acknowledge when a patient needs psychological care, as many will at some point\u0026hellip; They just need to have the right people in place to send you \u0026ndash; the gastroenterologist should be equipped to know who I can see.\u0026rdquo; (P30, FG10)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eKnowledgeable and\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eskilled clinicians\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So, there is a lot of education that would be\u0026hellip; for the people that are in care. The doctors, the specialists, they don\u0026rsquo;t seem to be either aware [of] or educated or concerned [about]\u0026hellip; this sort of stuff at all\u0026hellip; It would be introducing that, adding that to people who are studying to become specialists in this area.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P5, FG5)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eCollaboration between clinicians / services\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I actually think the IBD clinic should be involved, or the cancer clinic should be seeking more help from the IBD clinic...\u0026rdquo; (P20, FG2)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eCompassionate and responsive approach\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;My doctor\u0026rsquo;s great\u0026hellip; he puts his hand on mine and says \u0026lsquo;oh, I\u0026apos;m sorry to hear you\u0026rsquo;re not feeling too well, you\u0026rsquo;ve had bit of an uphill battle\u0026rsquo; \u0026ndash; you know, it gives you that little bit of comfort.\u0026rdquo; (P27, FG8)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003ePersonalized / targeted approach\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026apos;s critical that there\u0026apos;s stepped levels of care. So, a health educator\u0026hellip; that\u0026apos;s the beginning, and then some\u0026hellip; may need counselling, they may or may not need a psychologist, they may or may not need psychiatric support\u0026hellip; It\u0026apos;s really crucial that there\u0026apos;s no attempt to create a single psychological support approach. It\u0026rsquo;s got to have scope for\u0026hellip; a higher level of care as their needs go there.\u0026rdquo; (P7, FG4)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eOngoing research\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;More research about how your gut affect your mental health.\u0026rdquo; (P26, FG9)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"100%\" colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003eEducation and Preparation\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eBenefits of education\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Maybe talking about whether there were different options [re medications], which I now know that there were\u0026hellip; they just were never communicated to me\u0026hellip; that might have helped\u0026hellip; I like to be informed.\u0026rdquo; (P4, FG1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eProviders of education\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;An IBD nurse\u0026hellip; rang me each week and chatted to me, and asked how I was going\u0026hellip; Just that extra support there...\u0026nbsp;\u003c/em\u003e\u003cem\u003ethe nurse has the time to chat to me if I have any questions and that sort of thing.\u0026rdquo;\u003c/em\u003e\u003cem\u003e\u0026nbsp;(P8, FG3)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eTiming of education\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;At the beginning\u0026hellip; you\u0026rsquo;re given a couple of pamphlets, or you\u0026rsquo;re told a little bit and that\u0026rsquo;s it and [you] go off and you\u0026rsquo;re kind of overwhelmed! It would be nice to have\u0026hellip; a call the next day\u0026hellip; when you\u0026apos;re full of questions and trying to figure out what\u0026apos;s going on!\u0026rdquo; (P29, FG9)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eEffective education\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;The other thing about education is consistent messages.\u0026rdquo; (P25, FG8)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eIBD and management\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026rsquo;m still sort of struggling to know what I really shouldn\u0026apos;t be eating and maybe what I should be eating\u0026hellip; it\u0026apos;s always better when you talk to someone\u0026hellip; they have some insights that you may not be able to get out of the book yourself.\u0026rdquo; (P23, FG7)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003ePsychological health\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;The prevalence of mental health concerns and issues related to IBD\u0026hellip; something that I never had heard of before. I thought, wow if someone told me that\u0026hellip; that would have made me feel a little bit more normal, where I was at the time, what I was going through.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P19, FG3)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eHealth promotion\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So, education, scene setting, even just you know, talking about what you need to fit into your life when you have a chronic illness\u0026hellip; medication, sleep um, you know, other things that all contribute to you having, I guess, a good baseline health, so that you can deal with whatever is coming your way. That sort of thing is I think helpful.\u0026rdquo; (P4, FG1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003eSocial Connection\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003e\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eBenefits of connection\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;\u003c/em\u003e\u003cem\u003eSupport just in an online forum for other people with IBD helps me realize I\u0026apos;m not too bad... To hear that other people have it and may have it worse \u0026ndash; not that you\u0026rsquo;d wish that on anybody \u0026ndash; but to just hear what other people\u0026apos;s stories are, makes you feel a bit more okay. A lot of people are dealing with this, not just me\u0026hellip; it\u0026apos;s nice to have that connection.\u0026rdquo; (P29, FG9)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eFormal social supports\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u0026ldquo;\u003cem\u003eOne of the interventions that I think could be useful\u0026hellip; is a mentoring relationship.\u0026rdquo; (P25, FG8)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eInformal social supports\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Definitely family support, like you know, friend support\u0026hellip; makes a huge difference.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P1, FG6)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003ePeer support worker qualities\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;As long as the peer supporter is well, living with the illness, well as best they can\u0026hellip; promoting wellness and things like that, to the guidelines.\u0026rdquo; (P28, FG8)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eFrequency of social support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026apos;d love to do some type of\u0026hellip; monthly peer support catch-up or something... I know life is busy, you might not be able to get to every month\u0026hellip; but that would be good.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P12, FG2)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003ePsychological Input\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003e\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eBenefits of psychological input\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;J\u003c/em\u003e\u003cem\u003eust to have someone who has that understanding to talk through everything with you. And to yeah, I guess someone to help follow your journey with you... because that was a lot to take in when you have little to no understanding... To help process everything.\u0026rdquo;\u003c/em\u003e\u003cem\u003e\u0026nbsp;(P22, FG4)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eKey times for psychological input\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Probably at diagnosis would be an important time, because you have to accept that you have a lifelong illness and a chronic illness. And I think, having someone to talk through that with you is important.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P14, FG2)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eKey treatment targets\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It gets kind of embarrassing like, because I have some changes down there that I haven\u0026apos;t felt comfortable with being intimate with anyone for quite a while. So, I guess you know, learning to deal with that or learning to accept that has been challenging\u0026hellip;\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P11, FG3)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eClinician qualities\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I think that\u0026apos;s really important \u0026ndash; to have the knowledge of the medical side of things, and then, like you can specialize your psychological treatment according to that.\u0026rdquo; (P, FG)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eInterventions and approaches\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Pain management through hypno(therapy), yeah hypno I had done, and that\u0026apos;s been very helpful.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P1, FG6)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eFrequency of input\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It doesn\u0026apos;t need to be very regular sessions either\u0026hellip; once a month.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P3, FG1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"100%\" colspan=\"2\" valign=\"top\"\u003e\n \u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"1039\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"27.5%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003eAccessible Services\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"72.5%\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003e\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eAvailable\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I think availability, for you know, if you need to ring someone out to talk to them.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P21, FG6)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eAffordable\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;My first thought was free clinical psychology services!\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P15, FG4)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eSetting\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;As long as it\u0026apos;s sort of like where you go for your treatment. It would be better for the people so they\u0026rsquo;re not traveling here there and everywhere.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P10, FG1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eVarious delivery Formats\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;But any kind of telehealth service\u0026hellip; I think we, you know, in lockdowns we\u0026rsquo;re sort of used to\u0026hellip; dialing into calls like this... So, I\u0026apos;m not too fussed how it\u0026apos;s delivered, as long as there\u0026rsquo;s someone on the end of the phone or at the end of a video call!\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P3, FG1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eCredible resources\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Information like those should be aggregated at some place, which will help other people definitely.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P2, FG1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003eFamily members\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I think for me, a gold standard would also include my partner because he watches\u0026hellip; he has no idea how to help me. And\u0026hellip; he can\u0026apos;t help, there\u0026apos;s nothing he can do in those darker times... So, I think some information and just some support for your partner.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P13, FG4)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.176470588235293%\" valign=\"top\"\u003e\n \u003cp\u003ePromotion and awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.82352941176471%\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So, I feel more promotion of the resources, if they were to be created... more availability or promotion of them is important as well.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P14, FG2)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"100%\" colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eNote \u0026ndash; P\u0026nbsp;\u003c/em\u003erefers to participant number and \u003cem\u003eFG\u003c/em\u003e to focus group number.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"digestive-diseases-and-sciences","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ddsj","sideBox":"Learn more about [Digestive Diseases and Sciences](http://link.springer.com/journal/10620)","snPcode":"10620","submissionUrl":"https://submission.nature.com/new-submission/10620/3","title":"Digestive Diseases and Sciences","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Inflammatory Bowel Diseases, psychological factors, co-design","lastPublishedDoi":"10.21203/rs.3.rs-3838848/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3838848/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eThere is a need to improve psychological care for people with Inflammatory Bowel Diseases (IBD), noting the high psychosocial burden of disease.\u003c/p\u003e\u003ch2\u003eAims\u003c/h2\u003e \u003cp\u003eThis study qualitatively explored the views of people living with IBD to help co-design future services that better meet the psychological needs of consumers.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eAdults with IBD were recruited to attend virtual focus groups to discuss what they want most in an IBD-specific psychological service. The discussions were recorded and transcribed, and data were analyzed using conventional content analysis. Draft results were summarized midway and reviewed by remaining focus groups and a final expert consumer. A quantitative dataset was created of comment frequencies.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThirty-one participants took part in the study: ten focus groups were held with an average of three participants per group. The analysis identified 254 codes, 38 sub-categories and six categories. Five main categories were identified for an IBD-specific psychological service: \u003cem\u003ePeople-Centered Healthcare\u003c/em\u003e (commented on by 90% of participants), \u003cem\u003eEducation and Preparation\u003c/em\u003e (83%), \u003cem\u003eSocial Connection\u003c/em\u003e (83%), \u003cem\u003ePsychological Input\u003c/em\u003e (93%), and \u003cem\u003eAccessible Services\u003c/em\u003e (97%). Results were summarized in a set of proposed clinical guidelines.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThe findings of this study identify important insights from people living with IBD regarding priorities for psychological services. IBD services should focus on improving education, addressing social connection, and integrating psychological input, as well as becoming more people-Centered and accessible. It is hoped that IBD services consult the proposed clinical guidelines to inform co-designed service improvements.\u003c/p\u003e","manuscriptTitle":"Psychological services for people with Inflammatory Bowel Diseases: Care co-designed by consumers","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-01-09 19:30:35","doi":"10.21203/rs.3.rs-3838848/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-01-31T16:35:52+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-01-24T15:42:22+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"1c317922-aa35-44ac-9f36-8aa46e804c70","date":"2024-01-16T12:42:33+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-01-15T16:57:59+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-01-09T19:23:34+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-01-06T12:49:46+00:00","index":"","fulltext":""},{"type":"submitted","content":"Digestive Diseases and Sciences","date":"2024-01-06T05:12:21+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"digestive-diseases-and-sciences","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ddsj","sideBox":"Learn more about [Digestive Diseases and Sciences](http://link.springer.com/journal/10620)","snPcode":"10620","submissionUrl":"https://submission.nature.com/new-submission/10620/3","title":"Digestive Diseases and Sciences","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"ed189ba5-bdc1-4b9e-ab92-d00e5218dfb4","owner":[],"postedDate":"January 9th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2024-03-03T16:51:13+00:00","versionOfRecord":[],"versionCreatedAt":"2024-01-09 19:30:35","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-3838848","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3838848","identity":"rs-3838848","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}