A Qualitative Study Exploring Psychosocial Care in Inflammatory Bowel Disease: Lessons from Aotearoa New Zealand

A Qualitative Study Exploring Psychosocial Care in Inflammatory Bowel Disease: Lessons from Aotearoa New Zealand | 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 A Qualitative Study Exploring Psychosocial Care in Inflammatory Bowel Disease: Lessons from Aotearoa New Zealand Sancharya Pahwa MHealthPsyc, Annie S. K. Jones, Sian Ellett MHealthPsyc, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7984369/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Existing evidence demonstrates that inflammatory bowel disease (IBD) profoundly impacts physical, psychosocial and emotional well-being, yet psychosocial support is limited in routine care in Aotearoa New Zealand (NZ). This qualitative study aimed to explore the lived experience of adults diagnosed with IBD in NZ, focusing on psychosocial challenges and patient-driven recommendations for improving support during diagnosis and early disease management. Methods Twelve adults with IBD participated in semi-structured interviews as part of a nested qualitative study. Data were analysed using the Framework Method of thematic analysis to identify key patterns in participants’ experiences. Results Four main themes reflected the experience of being diagnosed with IBD: 1) Trust and Mistrust, 2) Care not Cure, 3) Educate, Adhere, Empower, and 4) Dynamics of Coping and Adjustment. Participants described difficulties navigating the healthcare system, coping with changes in body and identity, and managing the psychological burden of living with a chronic illness. A consistent lack of integrated psychosocial support was reported. Participants emphasised the need for improved health literacy, support for medication adherence, and tailored psychological care. Their suggestions underscored the importance of embedding psychosocial services within routine IBD management. Conclusions Adults newly diagnosed with IBD in NZ face substantial psychosocial challenges that are not adequately addressed in current care models. Integrating psychosocial support into routine IBD care could alleviate patient burden and enhance health system responsiveness. These findings offer critical insights for developing more holistic, patient-centred approaches to IBD care in NZ and similar healthcare contexts. inflammatory bowel disease psychosocial support qualitative study thematic analysis Framework Method Figures Figure 1 INTRODUCTION Inflammatory bowel disease (IBD), primarily manifesting as Crohn’s disease (CD) and ulcerative colitis (UC), is a chronic autoimmune disorder characterised by periods of inflammation [ 1 – 2 ]. IBD requires lifelong treatment and lifestyle modifications to manage debilitating symptoms [ 3 – 5 ] and can result in severe complications and invasive surgeries [ 6 – 9 ]. The global prevalence of IBD is rising, significantly increasing patient morbidity and healthcare system burden, including in Aotearoa NZ which has one of the highest prevalence rates of IBD worldwide [ 10 – 12 ]. IBD symptoms including pain, fatigue, and urgency can severely impact physical, psychosocial, and emotional well-being, thus compromising overall quality of life [ 13 – 16 ]. Unsurprisingly, people living with IBD (pwIBD) report high rates of psychological distress, both in comparison to those living with other long-term conditions [ 17 – 18 ], and the general population [ 19 ]. A recent meta-analysis suggested co-morbid rates of depression and anxiety in IBD can be as high as 58% during flares [ 19 ]. NZ data suggests that 31% and 22% of pwIBD experience severe symptoms of depression and anxiety respectively [ 20 ]. Psychological co-morbidities in IBD are associated with poorer clinical outcomes, including increased inflammation, more frequent hospitalisation, and up to 55% higher healthcare costs [ 21 ]. Importantly, a recent meta-analysis found that psychological interventions in IBD can reduce inflammation levels [ 22 ], highlighting the importance of integrated psychological care in IBD for improving physical patient outcomes. However, co-morbid mental health conditions remain largely undiagnosed and therefore untreated in IBD [ 23 ]. Many factors related to living with IBD can impact psychosocial wellbeing. IBD can compromise patients’ ability to engage in social and work roles due to symptoms such as pain and incontinence [ 24 – 29 ], while the associated stigma of bowel symptoms can exacerbate feelings of social isolation [ 28 , 30 ]. Research also suggests a bidirectional relationship between increased inflammation and distress in IBD [ 22 ]. Wellbeing can also be impacted by healthcare system factors such as diagnostic delays [ 12 , 31 – 33 ], which may be caused by insufficient awareness among both the public and healthcare providers (HCPs), and the symptomatic overlap between IBD and other gastrointestinal conditions [ 31 , 33 ]. Additionally, pwIBD must self-manage cycles of flares and remission, significant treatment burden, and physical bodily changes (such as the need for stoma bags and weight changes). Optimal IBD care should therefore integrate medical interventions with psychosocial support [ 34 – 35 ]. Despite this acknowledgement, limited psychological support is available in IBD care worldwide. In the UK, the National IBD Standards indicate that as part of multi-disciplinary care, IBD services should include a 0.5 whole time equivalent psychologist per 250,000 people in the catchment area. However, a 2021 survey found that only 2% of services in the UK adhere to this guidance [ 36 ]. In NZ, clinicians and clinical guidelines acknowledge the need for psychosocial assistance, especially for newly diagnosed patients facing severe diagnoses [ 37 – 38 ], however demand for psychological support greatly outweighs availability. Consequently, many gastroenterologists refer patients to non-governmental organisations (NGOs) for additional support, such as Crohn's Colitis NZ who play a vital role in providing peer assistance, information, and advocacy [ 12 ]. Guidance on how to effectively deliver integrated care in IBD remains limited. Existing studies on psychosocial support needs often focus on specific phases, such as diagnosis [ 31 – 32 ], transition to adult services [ 39 ], or particular populations such as rural communities [ 40 ], leaving gaps in understanding how psychosocial needs for pwIBD evolve over time. Additionally, NZ based research on the experience of living with IBD has focused on rural populations [ 41 ], and the psychosocial functioning of children and adolescents [ 42 ]. There is a need to understand the psychosocial needs of pwIBD in NZ more broadly across the IBD journey, particularly regarding the impact of diagnosis, transitions between services, and ongoing support requirements, to inform how psychosocial support can be better integrated into routine care. Accordingly, this study aimed to explore psychosocial challenges and patient-driven recommendations for support across the IBD journey in NZ. Findings are intended to inform service improvement and contribute to the development of scalable, integrated psychosocial interventions, which may have relevance in international contexts facing similar service delivery constraints. METHODS Study design This nested qualitative study was part of a larger randomised controlled trial (iACT4IBD) exploring the efficacy of an Acceptance and Commitment Therapy (ACT)-based psychosocial intervention for improving well-being for pwIBD living in NZ [ 43 ]. Participants provided informed consent and ethical approval was granted from the Northern B Health and Disability Ethics Committee on the 2nd December 2022 (ref: EXP 13276). The study was pre-registered on the Australian New Zealand Clinical Trials Registry (Universal Trial Number: U1111-1282-2334). Reporting for the current study follows the Consolidated Criteria for Reporting Qualitative Research (COREQ) [ 44 ]. Procedure and Participants iACT4IBD participants were recruited between February and April 2023 from gastroenterology outpatient departments in Auckland, NZ by responding to recruitment letters and flyers. Eligible participants had an IBD diagnosis, were over 18 years old, living in NZ, could understand English, had access to a mobile phone or computer with Wi-Fi, and could provide informed consent. Exclusion criteria included current hospitalisation, currently seeking mental health support, regularly practicing mindfulness or meditation, and testing positive for COVID-19. Recruitment for the qualitative study continued until data saturation was reached, which was achieved after 12 participants were interviewed. All participants received a $ 30 (NZD) voucher for their participation. Data Collection Qualitative data . An interview schedule was developed, piloted and refined before interviews commenced. Interviews were conducted online via Zoom, lasting approximately one hour. Interview recordings were transcribed using the “ Transcribe ” feature on Microsoft Word Online and were then cleaned and checked by the research team. Demographics . Demographic data collected via self-report from the iACT4IBD trial included age, ethnicity, gender, whether participants were currently studying, level of education, living arrangements, and relationship status. Clinical information included IBD diagnosis, age at diagnosis, years since diagnosis, comorbid medical conditions, current medications, and dietary regimens to help with IBD. Data Analysis Qualitative data was analysed using the framework method [ 45 ], a qualitative approach often grouped under thematic analysis [ 46 ]. This approach is useful for comparing qualitative data within and between individuals through a systematic process which utilises a coding framework matrix. A critical realist epistemology was used to analyse and interpret data, asserting that while qualitative data is taken to accurately reflect reality, experience, and meaning, our knowledge of the world is also influenced by social structures, power dynamics and historical context [ 47 ]. Coding was completed using a combination of inductive and deductive methods [ 45 ], whereby analyses were driven by the overarching research questions and theories on coping with chronic illness, as well exploring new concepts and ideas from the data itself. Line by line coding was completed using NVivo (Release 1.7.1). Three initial transcripts selected by the lead coder (SP) which reflected the most heterogenous data, were co-coded by three coders (SP, AS, SE). Coding was compared and discussed to develop an initial coding framework which was then applied to the remaining transcripts by SP and SE. The framework was iteratively developed during the coding process with new codes added for breadth and any redundant codes removed. The co-coders and wider research team met routinely throughout the coding process to discuss discrepancies in coding (including considerations regarding reflexivity) and interpretation by comparing codebooks. The final codebook can be seen in Appendix 1. Demonstrating reflexivity was a key consideration in this study as two of the investigators have lived experience of IBD. To promote transparency regarding researcher engagement [ 48 – 49 ], a reflexive journal was kept to record personal reflections of any study-related communications, memos, thoughts, emotions, insights, and realisations [ 49 ]. Stakeholder engagement was also conducted from the outset of the project, including consulting with IBD HCPs and Crohn’s and Colitis NZ to get feedback on the study design and interview schedule. Once coding was completed, the research team met to discuss and finalise themes to represent experiences captured in the dataset. RESULTS Sample demographics The mean age of the sample was 37 years old (SD = 9.1). Most participants were female (n = 9), of European ethnicity (n = 9), and had a university education (n = 11). A similar number of participants had CD (n = 5) and UC (n = 6), most were diagnosed less than 5 years ago (n = 8; see Table 1 for sample sociodemographic and clinical characteristics). Table 1 Sociodemographic and Clinical Characteristics of Participants Characteristics Participants (n = 12) Gender Female 9 Male 3 Ethnic group European 9 Asian 2 Other 1 Education level Bachelor’s degree 10 Postgraduate degree 1 School certificate 1 Relationship status Married 9 In a relationship 3 Living arrangements Family 10 Friends/flatmates 2 Employment Full-time 6 Part-time 4 Homemaker 2 Diagnosis Ulcerative Colitis 6 Crohn’s Disease 5 Indeterminate Colitis 1 Pharmacological Treatment 5-Aminosalicylic Acid 2 Corticosteroids 1 Immunomodulators 3 Biologics 4 Surgery 2 Other long-term conditions None 7 Physical 3 Psychological 2 Time since diagnosis Newly diagnosed ( 5 years ago) 4 Qualitative Analysis Four key themes were identified when exploring challenges and recommendations for improving support in IBD care in New Zealand: 1) Trust and Mistrust, 2) Care not Cure, 3) Educate, Adhere, Empower, and 4) the Dynamics of Coping and Adjustment. These themes and their subthemes are depicted in Fig. 1 . Theme 1: Trust and Mistrust Trust and mistrust shaped pre-diagnostic and early-stage management with IBD, impacting participants' relationships with their HCPs, their bodies, and treatment plans. Chaos of Diagnosis Participants experienced delays in diagnosis due to IBD’s unpredictable nature. Assessments during periods of remission could often missed disease markers. These misdiagnoses and symptom dismissal could foster mistrust and therefore made self-advocacy essential. “… I proactively asked for care... Unfortunately you need the knowledge and experience…You have to advocate for yourself… because they [doctors] don’t know it all.” (Female, 41, IC) Self-versus-Body Many participants described feeling disconnected from their bodies and identity during the chaotic diagnostic period, including feeling a loss of control and trust. Participants also described experiencing anger toward their bodies and a sense of forgiveness post-diagnosis. “Well, you've sort of faced like months of being disconnected from your own body because your body is doing its own thing that you don't want it to be doing and you don't have control.” (Female, 37, CD) “I suppose before that [IBD diagnosis], I felt really angry with my body… There was almost like a forgiveness that happened when I got the diagnosis.” (Female, 40, UC) Harmony in Healthcare Participants highlighted the importance of their relationship with their HCPs given the unpredictable nature of their IBD journey which was often shaped by trial and error. Trust was key and described as being built through perceived competence, empathy, and open communication. Perceived competence brought a sense of reassurance that medical needs were being appropriately managed, while empathy and open communication fostered emotional safety easing the stress and uncertainty of navigating treatment options. “Having a relationship with your specialist is invaluable… this is a lifelong disease, and you're dealing with lots of medications… to have someone there that you absolutely trust, who wants the best for you and has got your back is massive.” ( Female, 35, UC) Negative experiences with HCPs occurred when participants felt no attention was given to the emotional impact of their diagnosis, and in instances where they felt dismissed. “I don't know if enough consideration is given by doctors that (an IBD diagnosis) is quite a thing to get your head around…being told you'll be on drugs for the rest of your life, it's nearly quite demoralising for a while there.” (Female, 35, UC) Theme 2: Care not Cure This theme highlighted the need to feel cared for by support networks while managing a life-long condition. Supportive relationships, where emotional and practical burdens could be shared, were reported as central to managing IBD. Participants valued empathy over sympathy, which could be unhelpful and further reinforce limitations. “We should all be able to empathise with someone's situation, but you don't ever really want someone's sympathy… For me, if a friend knows, I've got a flare up and drops around a meal, or offers to mow the lawn or something…That’s much more helpful than anything.” (Female, 49, UC) Participants also valued empathetic connections with peers facing similar challenges, which promoted open communication and reduced feelings of social isolation. Online groups, such as Crohn’s and Colitis NZ’s Facebook page, offered accessible support which normalised different experiences of living with IBD. “There are support groups available. It is important to be OK to open up to someone you can trust and share that burden with them, so that you’re not doing it all by yourself.” ( Male, 43, CD) “In some ways, I feel very grateful because I do read some of the stuff online and go, ‘Oh my gosh, I'm so lucky I'm not nearly as bad as that.” (Female, 49, UC) Although family support was vital, especially during early diagnosis and flares, participants felt guilt over the strain that IBD placed on relationships, particularly with dependants like children. “Suddenly I had to abruptly wean an infant off from breastfeeding… then he got quite sick… that was a stress on him… you can't deny the timing.” ( Female, 36, CD) Despite personal networks, participants reported feeling isolated during severe flares and highlighted the need for support from specialist HCP to support symptom management, nutrition, coping, and urgent care guidance. The most impactful healthcare relationship for participants was often their IBD nurse, who was described as responsive, accessible and central to their care throughout the illness journey. This included providing crucial guidance on self-management and navigating the healthcare system, especially during early diagnosis when symptoms were severe and knowledge was limited. “Having an IBD nurse… was huge… I could ask, ‘Is this normal?” (Female, 40, UC) “When you have a reasonably severe IBD, your GP doesn’t really understand it… you are left with your specialist and they’re very busy… So there is a gap there. Having a nurse and that line to be able to talk to her was really valuable.” ( Female, 35, UC) Theme 3: Educate, Adhere, Empower Education for pwIBD and the general public was seen as an important way to reduce stigma, improve understanding and patient self-management. A Cycle of Stigma and Silence Most participants reported limited knowledge of IBD prior to diagnosis and noted a general lack of public awareness. The private nature of bowel-related symptoms made open discussion difficult, reinforcing embarrassment and social isolation. IBD was perceived as overlooked compared to more widely recognised conditions. “ I felt like it was so rare, I was like, ‘why haven't I heard about this? Why haven't I met someone with this? Am I the first person who has it?’” (Female, 22, UC) “ People are really open and comfortable talking about cancer, talking about heart disease… the big ones, but with something like this [IBD], it's such a private thing that people don't like to talk about it .” (Female, 40, UC) Social taboos and symptom invisibility made conversations challenging, perpetuating stigma and limited awareness. “You talk to your friends and you don't want to gross them out [laughs]… people ask, ‘How do you know when you're unwell?’… it's not nice to talk about.” (Female, 35, UC) Non-adherence… Not My Fault! Participants described receiving insufficient education from healthcare professionals regarding non-adherence and the risk of disease progression. Many participants were unfamiliar with managing a chronic illness and incorrectly assumed they could stop taking medication once symptoms subsided. “A huge mistake from my side was stopping the medication... I had no idea. Did I ever ask that? No. But did I ever think I had to ask that? No. So I think there should have been a bit more proactive advice.” (Female, 41, IC) Non-adherence was particularly common with early-stage treatments such as suppositories and enemas. While these therapies are generally recommended due to minimal side-effects, discomfort led several participants to discontinue using them – a decision which they later regretted. Participants expressing wishing their HCPs had more clearly explained the benefits and potential consequences of discontinuing these treatments. “ Well, it’s just no fun doing enemas, is it?... I just assumed ‘Great, symptoms have gone. I'm better. That's dealt with. On we go, without doing bloody enemas every night!’… So I stopped… God, I was so stupid. But a part of me thinks they [HCPs] were stupid for not being clearer. ” ( Male, 53, UC) Knowledge is Power Participants stressed the need for individually tailored IBD education that supports health literacy and addresses holistic disease management, to promote strong patient-provider relationships, self-advocacy, and psychological wellbeing. Participants felt education should include the link between stress and IBD. Understanding this from diagnosis could help participants identify triggers and develop bodily awareness, which could support greater self-efficacy, healthier coping, and potentially reduce disease progression and severity. “I wish I knew how much stress played a part in it… if I was able to learn to cope with that earlier on… I might have dealt with less severe symptoms.” ( Female, 22, UC) “It took a couple of years to understand my triggers and symptoms… I started to learn my body, I felt more in control because I could act before I got too sick… Now I feel I've got some say over my illness and my body again.” (Female, 35, UC) Bridging the Gaps: Diagnosis to Self-Management Participants described initial IBD consultations as often being too brief, leaving unaddressed gaps in guidance on self-management, symptom recognition, and clarity on when to seek help. Many noted they didn’t know what to ask while still processing their diagnosis. “ It's so hard to be your own advocate if you don't know what you're looking out for.” (Female, 30, CD) Participants made several recommendations to help navigate the early diagnostic journey, including providing clear self-management guidance early, being able to reach out for further support after the initial shock of diagnosis has lessened, guidance on what types of questions to ask, and how to identify warning signs of high disease activity or flares. “ An information pack on what to ask, what to expect when you're first diagnosed, what symptoms to lookout for, and what the normal, acceptable day to day symptoms are would be useful.” (Female, 30, CD) “If they had an appointment two weeks after I was diagnosed for all of my questions… I would have had time to process it… even if it was someone living with it [IBD] or who had the ability to talk about it more would have been quite helpful… rather than just Googling or sitting at home stressing about it.” (Female, 35, UC) Theme 4: Dynamics of Coping and Adjustment This theme explores how participants coped and adjusted to living with IBD, highlighting shifts in identity, emotional resilience, and unmet psychosocial needs. Balance, Positive Adjustment, Empowerment Optimal adjustment to an IBD diagnosis was described as being able to balance your physical health with life enjoyment. Rest, self-care, and pacing alongside daily responsibilities to maintain normalcy were emphasised. “ When you have a chronic illness, you realise that you can't do it all and you need to actually relax and have breaks… that tension there between trying to maintain some normalcy while also recognising that you might want to slow down.” (Female, 37, CD) Participants who achieved a sense of balance and mastery in self-management reported greater resilience, improved relationships, and empowerment. Most participants reported seeing this relationship between improving their psychosocial well-being and resulting improvements in their disease activity and quality of life. Participants who adjusted well also engaged in peer support, social media advocacy, education, and openly discussing IBD to reduce stigma. “ Being able to educate people and talk to people about it, actually takes away the stigma for me… also helping to take away the stigma for others.” (Female, 40, UC.) Adaptive coping strategies used by participants included reframing negative thoughts, practising gratitude, prioritising wellness, and seeking support. Some participants came to view their diagnosis as an opportunity and catalyst for personal growth. “I felt very negative about having [IBD] in the beginning… But at this point, I realise I was given this condition because I was strong enough to deal with it… it makes you realise how strong you are as a person.” (Female, 22, UC) Unmet psychosocial support needs Many participants reported that they had to actively seek out psychosocial support or came across it by chance. For some, the iACT4IBD intervention was the only mental health support they had received since being diagnosed. Unsurprisingly, the most common recommendation for future care was to incorporate routine psychosocial support from diagnosis onward. Participants criticised IBD care in NZ as overly focused on physical health, missing crucial emotional and psychological needs, especially at diagnosis and during flares. “It was all about physical health here in New Zealand... it would be pretty common for people to be feeling depressed or anxious at the time of diagnosis… giving people the opportunity to have three free counselling sessions at least, would be almost mandatory to be able to cope with a long term illness .” (Female, 37, CD) All participants expressed that their primary motive for participating in the interviews was a desire to help others living with IBD and hopefully improve psychosocial support available in NZ in the future. DISCUSSION This study explored the psychosocial challenges and support needs of people living with IBD in New Zealand, offering insights to guide intervention development and integration of psychological care into existing services. Extending prior research, which often focuses on specific populations or clinical settings, this study provides a broader understanding of patient experiences across the IBD journey, from diagnosis to ongoing management. Four key themes reflect distinct and globally relevant challenges: trust in healthcare, the shift from curative to supportive care, education and empowerment, and coping and adjustment. Key Challenges Mistrust in healthcare providers arose when participants felt their pre-diagnostic concerns were dismissed, creating barriers to timely diagnosis and undermining wellbeing. This aligns with prior research in NZ and internationally [ 41 , 29 , 50 ], highlighting the importance of trust and effective communication in early IBD recognition. Structural and knowledge-based barriers, including limited access to specialists and insufficient guidance, further complicated care. NZ faces a 20% shortage of gastroenterologists [ 12 ], and specialist IBD burses, crucial for bridging care gaps, are also in short supply [ 12 , 52 ]. Limited health literacy and self-management skills contributed to early treatment non-adherence and poorer outcomes, underscoring the need for both workforce expansion and accessible patient resources. Establishing and Maintaining Healthy Coping and Adjustment Coping and adjustment were shaped by the unpredictable nature of IBD. Participants described a ‘trial and error’ process to understand their symptoms and treatments, consistent with prior NZ research [ 41 ]. Participants who reported positive adjustment to IBD still described the ongoing daily cost-benefit analyses required for self-management, consistent with previous research [ 26 , 53 – 54 ]. Unsurprisingly, social support in navigating these experiences, particularly from those with shared experiences, was highly valued. The self-versus-body sub-theme demonstrated the identity challenges patients face following an IBD diagnosis, including a disconnect between one’s perceived self and physical state. Participants described detachment from their bodies and incongruence between their past 'healthy self' and their 'ailing' state at early diagnosis. Feeling a lack of control over the body and altered body image are common findings across qualitative research in IBD [ 55 ]. This grieving process between the self pre and post-IBD diagnosis and the need to make peace with a new reality of this lifelong condition has been described in qualitative research both in NZ [ 56 ] and the UK [ 57 – 59 ]. This sense of separation can arise when an illness feels abnormal and uncontrollable, heightening awareness of previously taken-for-granted health [ 60 ]. Part of this process for some, appeared to be grieving the loss of their previous identity and adjusting to limitations created by IBD. Many participants eventually felt a re-alignment of self and body and an increased sense of control once they had the appropriate knowledge and coping skills to self-manage their condition. Stigma and Invisibility Participants reported difficulties in seeking emotional support from their social networks due to the stigma and invisibility of IBD symptoms, which led to feelings of isolation despite care from partners and family. Discussing symptoms such as diarrhoea and rectal bleeding was often perceived as embarrassing and taboo. This stigmatised IBD identity, feelings of ‘otherness’, and invisibility of living with IBDhas been highlighted in a previous research [ 13 , 20 , 25 , 27 , 30 , 55 , 61 ]. Previous NZ research suggests stigma may be particularly heightened for specific populations, such as those living in rural, close-knit communities [ 41 ] and adolescents [ 62 ]. Stigma can therefore ultimately impact both emotional and physical health via social withdrawal and isolation [ 55 ]. Recommendations Increase Public Awareness of IBD Public awareness of IBD symptoms, prevalence, and impact is limited both in NZ and globally [ 11 – 12 , 63 ]. Raising awareness could reduce the burden on pwIBD (in regards to fears of disclosure and stigma) and improve visibility of IBD in the healthcare system [ 63 – 64 ]. Effective education could include both public awareness campaigns and specialised education to support primary care providers in recognising IBD symptoms to ensure early referrals and investigations. Support Before and at Early Diagnosis Information provision and support should be routinely incorporated into IBD care both before and after diagnosis. For example, providing individuals with information about gut symptoms, what to expect and strategies for symptom management may help reduce anxiety. Additionally, providing a follow-up appointment after diagnosis of IBD would allow patients time to process information and seek further clarification to support self-management. Similarly, patients from rural NZ highlighted the importance of HCPs repeating information throughout the IBD journey, given how overwhelming diagnosis can be and how its relevance changes over time [ 41 ]. Participants in the current study who felt dissatisfied or lost at diagnosis frequently sought information from external sources, such as online platforms, which could be overwhelming or inaccurate. Information seeking is common in IBD, with one study finding that 61% and 92% of newly diagnosed patients use the internet to seek information prior to and after their first consultation respectively. Many reported dissatisfaction or increased concerns after their gastroenterologist visit. These findings emphasise the importance of providing patients with accurate information, and signposting them to reliable resources, such as those provided by NGOs. Promoting Holistic Care Participants in the current study and previous qualitative work in NZ [ 41 , 56 ] have highlighted the need for a holistic approach to IBD care, that focuses not only on medications but also lifestyle changes. Additionally, this holistic care should focus on establishing a positive relationship between patients and the healthcare team. Positive relationships with IBD HCPs were marked by empathy, care, and trust, which facilitated open communication and effective collaboration in health decision-making. It is important that patients feel listened to and not like “just another IBD patient” [ 41 ]. A trusting and effective relationship between patients and HCPs in IBD promotes positive self-management behaviours, such as medication adherence [ 56 ] and the development of effective coping skills [ 25 , 65 ], which can ultimately enhance quality of life and overall health outcomes [ 66 – 67 ]. A particularly valued part of the IBD care team is IBD nurses, who participants described as crucial links between themselves and the specialist to support their self-management. Although ensuring IBD nurses are part of IBD care teams is a funding and governance issue, it is important to consider the support this role brings and how other HCPs in IBD could provide this where possible. Psychosocial Interventions for IBD The current research highlighted that holistic IBD care should include integrated psychological support as part of multidisciplinary treatment plans. Participants described experiencing care as being solely focused on physical health. Previous research in IBD [ 68 ] has suggested that providing psychosocial care within two weeks to six months post-diagnosis could help address concerns with trained professionals. While the integration of formal psychosocial support requires resources [ 16 ], an initial approach could be training gastroenterology teams to deliver effective communication and support which acknowledges common psychosocial challenges and signposts patients to resources such as charity support. Discussing IBD-related concerns with patients is vital for follow-up consultations. Options for delivering more formalised support could include allied HCPs such as health coaches or peer-to-peer support from individuals with long-term IBD. Additionally, recent work suggests that routine mental health screening and digital, therapist-assisted psychological support is feasible to implement into an IBD service with minimal additional resources [ 69 ]. These scalable, digital approaches may present potential avenues for implementing integrated care within services. The current study also highlights potential targets for future psychosocial IBD interventions. In the current study, patients discussed positive adjustment and resilience which they built over time in managing their IBD. Psychological resilience, defined as the ability to recover from adversity, has been linked to improvements in disease activity and quality of life in IBD patients, fewer surgeries in those with Crohn's disease [ 1 ], and greater life satisfaction over time [ 70 – 75 ]. This suggests that interventions to enhance coping skills and promote resilience may result in positive adjustment and ultimately improved IBD outcomes. STRENGTHS AND LIMITATIONS Primary strengths of this study include utilising stakeholder input via comprehensive consultations with clinicians and expert IBD health care professionals on study design, as well as considerations of reflexivity and the use of multiple co-coders and researchers with lived experience to ensure transparency and validity in the findings. The generalisability of the findings may be limited given this study was nested within the iACT4IBD study whereby participants likely represented a more motivated group. Reflexivity also presented unique challenges. During analysis, differences in data interpretation between coders with and without lived experience were highlighted. However, this prompted discussions that helped address instances of ‘over-interpretation’. Additionally, the interviewer’s disclosure of their IBD status with participants likely fostered trust and encouraged more open sharing enriching the data. Co-coding proved essential for capturing the nuances of this approach and the data. CLINICAL IMPLICATIONS AND FUTURE DIRECTIONS The findings of this study resulted in clear recommendations for improvements needed to provide holistic, integrated IBD care within NZ. This includes suggestions for more formalised psychosocial interventions, as well as suggestions for how HCPs could improve support and communication in routine care. These findings contribute to the international literature by highlighting the need for holistic, patient-centred approaches to IBD care that address psychosocial dimensions often overlooked in routine practice. Future research could utilise the current findings to develop psychosocial interventions for individuals with IBD in NZ. Future studies should assess the cost-effectiveness of any proposed solutions, such as integrating psychosocial support/interventions and increasing the number of IBD nurses within services, and ensure the perspectives of both patients and HCPs are captured to support effective future implementation. Future research might also consider how to identify psychosocial needs in pwIBD, such as the use of routine mental health screening in IBD care. This could include existing illness and IBD-specific measures of distress [ 69 , 76 ]. Lastly, a key finding from this study was the desire for more education around medication adherence and common treatments in IBD, in particular when newly diagnosed. We are currently planning to incorporate a new education module into the iACT4IBD online intervention to specifically address concerns regarding medication adherence in early stage IBD. CONCLUSION This study set out to explore the challenges of living with IBD in NZ, with an emphasis on psychosocial support needs. A key objective was to gather insights and recommendations for improving psychosocial care throughout the treatment journey of individuals diagnosed with IBD. Qualitative findings highlighted the difficulties participants faced not only at the time of diagnosis but also throughout their ongoing experience of living with IBD. The recommendations and practical strategies identified in this study offer valuable guidance for developing more holistic and integrated IBD care in NZ and globally. Abbreviations IBD – inflammatory bowel disease CD – Crohn’s disease UC – ulcerative colitis ACT – Acceptance and Commitment Therapy HCP – healthcare provide Declarations Authors’ contributions and acknowledgements: S.P. and A.S. formulated the study's design and framework. S.P. conducted the interviews and S.P. and K.B. performed the coding and data analysis, with S.E and A.S. assisting in the analysis. S.P. and A.J. drafted the manuscript. All authors reviewed, edited, and approved the final manuscript. The authors express gratitude to the academic and clinical consultants and participants for their valuable time and expertise. No funding was received for this study and the authors have no conflicts of interest. References Baumgart DC, Carding SR. Inflammatory bowel disease: cause and immunobiology. The Lancet . 2007;369:1627–1640. Yeshi K, Ruscher R, Hunter L, et al. Revisiting inflammatory bowel disease: pathology, treatments, challenges and emerging therapeutics including drug leads from natural products. Journal of Clinical Medicine . 2020;9:1273. Lo CH, Khalili H, Song M, et al. Healthy lifestyle is associated with reduced mortality in patients with inflammatory bowel diseases. Clinical Gastroenterology and Hepatology . 2021;19:87–95. 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The level of public knowledge about inflammatory bowel disease in Christchurch, New Zealand. Inflammatory Intestinal Diseases. 2020;5:205–211. Bray J, Fernandes A, Nguyen GC, et al. The challenges of living with inflammatory bowel disease: summary of a summit on patient and healthcare provider perspectives. Canadian Journal of Gastroenterology and Hepatology. 2016;2016:9430942. Sajadinejad MS, Asgari K, Molavi H, et al. Psychological issues in inflammatory bowel disease: an overview. Gastroenterology Research and Practice. 2012;2012:106502. Lai C, Sceats LA, Qiu W, et al. Patient decision-making in severe inflammatory bowel disease: the need for improved communication of treatment options and preferences. Colorectal Disease. 2019;21:1406–1414. Engel K, Homsi M, Suzuki R, et al. Newly diagnosed patients with inflammatory bowel disease: the relationship between perceived psychological support, health-related quality of life, and disease activity. Health Equity. 2021;5:42–48. Husain A, Triadafilopoulos G. Communicating with patients with inflammatory bowel disease. Inflammatory Bowel Diseases. 2004;10:444–450. Jones ASK, Seaton N, Brown A, et al. The Illness-Related Distress Scale: development and psychometric evaluation of a new transdiagnostic measure. Psychological Medicine. 2025;55:e122. Sehgal P, Ungaro RC, Foltz C, et al. High levels of psychological resilience associated with less disease activity, better quality of life, and fewer surgeries in inflammatory bowel disease. Inflammatory Bowel Diseases . 2020;27:791–796. Purc-Stephenson RJ. A gift wrapped in barbed wire: personal growth among individuals with arthritis or inflammatory bowel disease. Doctoral dissertation, University of Windsor; 2008. Sirois FM, Hirsch JK. A longitudinal study of the profiles of psychological thriving, resilience, and loss in people with inflammatory bowel disease. British Journal of Health Psychology . 2017;22:920–939. Voth J, Sirois FM. The role of self-blame and responsibility in adjustment to inflammatory bowel disease. Rehabilitation Psychology . 2009;54:99–108. Cámara RJA, Lukas PS, Begré S, et al. Effects of social support on the clinical course of Crohnʼs disease. Inflammatory Bowel Diseases . 2011;17:1277–1286. Slonim-Nevo V, Sarid O, Friger M, et al. Effect of social support on psychological distress and disease activity in inflammatory bowel disease patients. Inflammatory Bowel Diseases . 2018;24:1389–1400. Dibley L, Czuber-Dochan W, Woodward S, et al. Development and psychometric properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): a new tool to measure disease-specific distress. Inflammatory Bowel Diseases . 2018;24:2068–2077. Additional Declarations No competing interests reported. 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IBD requires lifelong treatment and lifestyle modifications to manage debilitating symptoms [\u003cspan additionalcitationids=\"CR4\" citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e] and can result in severe complications and invasive surgeries [\u003cspan additionalcitationids=\"CR7 CR8\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. The global prevalence of IBD is rising, significantly increasing patient morbidity and healthcare system burden, including in Aotearoa NZ which has one of the highest prevalence rates of IBD worldwide [\u003cspan additionalcitationids=\"CR11\" citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eIBD symptoms including pain, fatigue, and urgency can severely impact physical, psychosocial, and emotional well-being, thus compromising overall quality of life [\u003cspan additionalcitationids=\"CR14 CR15\" citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Unsurprisingly, people living with IBD (pwIBD) report high rates of psychological distress, both in comparison to those living with other long-term conditions [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e], and the general population [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. A recent meta-analysis suggested co-morbid rates of depression and anxiety in IBD can be as high as 58% during flares [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. NZ data suggests that 31% and 22% of pwIBD experience severe symptoms of depression and anxiety respectively [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e].\u003c/p\u003e\u003cp\u003ePsychological co-morbidities in IBD are associated with poorer clinical outcomes, including increased inflammation, more frequent hospitalisation, and up to 55% higher healthcare costs [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Importantly, a recent meta-analysis found that psychological interventions in IBD can reduce inflammation levels [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e], highlighting the importance of integrated psychological care in IBD for improving physical patient outcomes. However, co-morbid mental health conditions remain largely undiagnosed and therefore untreated in IBD [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eMany factors related to living with IBD can impact psychosocial wellbeing. IBD can compromise patients\u0026rsquo; ability to engage in social and work roles due to symptoms such as pain and incontinence [\u003cspan additionalcitationids=\"CR25 CR26 CR27 CR28\" citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e], while the associated stigma of bowel symptoms can exacerbate feelings of social isolation [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Research also suggests a bidirectional relationship between increased inflammation and distress in IBD [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Wellbeing can also be impacted by healthcare system factors such as diagnostic delays [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan additionalcitationids=\"CR32\" citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e], which may be caused by insufficient awareness among both the public and healthcare providers (HCPs), and the symptomatic overlap between IBD and other gastrointestinal conditions [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. Additionally, pwIBD must self-manage cycles of flares and remission, significant treatment burden, and physical bodily changes (such as the need for stoma bags and weight changes).\u003c/p\u003e\u003cp\u003eOptimal IBD care should therefore integrate medical interventions with psychosocial support [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. Despite this acknowledgement, limited psychological support is available in IBD care worldwide. In the UK, the National IBD Standards indicate that as part of multi-disciplinary care, IBD services should include a 0.5 whole time equivalent psychologist per 250,000 people in the catchment area. However, a 2021 survey found that only 2% of services in the UK adhere to this guidance [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. In NZ, clinicians and clinical guidelines acknowledge the need for psychosocial assistance, especially for newly diagnosed patients facing severe diagnoses [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e], however demand for psychological support greatly outweighs availability. Consequently, many gastroenterologists refer patients to non-governmental organisations (NGOs) for additional support, such as Crohn's Colitis NZ who play a vital role in providing peer assistance, information, and advocacy [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eGuidance on how to effectively deliver integrated care in IBD remains limited. Existing studies on psychosocial support needs often focus on specific phases, such as diagnosis [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e], transition to adult services [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e], or particular populations such as rural communities [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e], leaving gaps in understanding how psychosocial needs for pwIBD evolve over time. Additionally, NZ based research on the experience of living with IBD has focused on rural populations [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e], and the psychosocial functioning of children and adolescents [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. There is a need to understand the psychosocial needs of pwIBD in NZ more broadly across the IBD journey, particularly regarding the impact of diagnosis, transitions between services, and ongoing support requirements, to inform how psychosocial support can be better integrated into routine care.\u003c/p\u003e\u003cp\u003eAccordingly, this study aimed to explore psychosocial challenges and patient-driven recommendations for support across the IBD journey in NZ. Findings are intended to inform service improvement and contribute to the development of scalable, integrated psychosocial interventions, which may have relevance in international contexts facing similar service delivery constraints.\u003c/p\u003e"},{"header":"METHODS","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eStudy design\u003c/h2\u003e\u003cp\u003eThis nested qualitative study was part of a larger randomised controlled trial (iACT4IBD) exploring the efficacy of an Acceptance and Commitment Therapy (ACT)-based psychosocial intervention for improving well-being for pwIBD living in NZ [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e]. Participants provided informed consent and ethical approval was granted from the Northern B Health and Disability Ethics Committee on the 2nd December 2022 (ref: EXP 13276). The study was pre-registered on the Australian New Zealand Clinical Trials Registry (Universal Trial Number: U1111-1282-2334). Reporting for the current study follows the Consolidated Criteria for Reporting Qualitative Research (COREQ) [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e].\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eProcedure and Participants\u003c/h3\u003e\n\u003cp\u003eiACT4IBD participants were recruited between February and April 2023 from gastroenterology outpatient departments in Auckland, NZ by responding to recruitment letters and flyers. Eligible participants had an IBD diagnosis, were over 18 years old, living in NZ, could understand English, had access to a mobile phone or computer with Wi-Fi, and could provide informed consent. Exclusion criteria included current hospitalisation, currently seeking mental health support, regularly practicing mindfulness or meditation, and testing positive for COVID-19.\u003c/p\u003e\u003cp\u003eRecruitment for the qualitative study continued until data saturation was reached, which was achieved after 12 participants were interviewed. All participants received a \u003cspan\u003e$\u003c/span\u003e30 (NZD) voucher for their participation.\u003c/p\u003e\n\u003ch3\u003eData Collection\u003c/h3\u003e\n\u003cp\u003e\u003cb\u003eQualitative data\u003c/b\u003e. An interview schedule was developed, piloted and refined before interviews commenced. Interviews were conducted online via Zoom, lasting approximately one hour. Interview recordings were transcribed using the \u0026ldquo;\u003cem\u003eTranscribe\u003c/em\u003e\u0026rdquo; feature on Microsoft Word Online and were then cleaned and checked by the research team.\u003c/p\u003e\u003cp\u003e\u003cb\u003eDemographics\u003c/b\u003e. Demographic data collected via self-report from the iACT4IBD trial included age, ethnicity, gender, whether participants were currently studying, level of education, living arrangements, and relationship status. Clinical information included IBD diagnosis, age at diagnosis, years since diagnosis, comorbid medical conditions, current medications, and dietary regimens to help with IBD.\u003c/p\u003e\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\u003ch2\u003eData Analysis\u003c/h2\u003e\u003cp\u003eQualitative data was analysed using the framework method [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e], a qualitative approach often grouped under thematic analysis [\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e]. This approach is useful for comparing qualitative data within and between individuals through a systematic process which utilises a coding framework matrix. A critical realist epistemology was used to analyse and interpret data, asserting that while qualitative data is taken to accurately reflect reality, experience, and meaning, our knowledge of the world is also influenced by social structures, power dynamics and historical context [\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eCoding was completed using a combination of inductive and deductive methods [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e], whereby analyses were driven by the overarching research questions and theories on coping with chronic illness, as well exploring new concepts and ideas from the data itself. Line by line coding was completed using NVivo (Release 1.7.1). Three initial transcripts selected by the lead coder (SP) which reflected the most heterogenous data, were co-coded by three coders (SP, AS, SE). Coding was compared and discussed to develop an initial coding framework which was then applied to the remaining transcripts by SP and SE. The framework was iteratively developed during the coding process with new codes added for breadth and any redundant codes removed. The co-coders and wider research team met routinely throughout the coding process to discuss discrepancies in coding (including considerations regarding reflexivity) and interpretation by comparing codebooks. The final codebook can be seen in Appendix 1.\u003c/p\u003e\u003cp\u003eDemonstrating reflexivity was a key consideration in this study as two of the investigators have lived experience of IBD. To promote transparency regarding researcher engagement [\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e], a reflexive journal was kept to record personal reflections of any study-related communications, memos, thoughts, emotions, insights, and realisations [\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e]. Stakeholder engagement was also conducted from the outset of the project, including consulting with IBD HCPs and Crohn\u0026rsquo;s and Colitis NZ to get feedback on the study design and interview schedule. Once coding was completed, the research team met to discuss and finalise themes to represent experiences captured in the dataset.\u003c/p\u003e\u003c/div\u003e"},{"header":"RESULTS","content":"\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eSample demographics\u003c/h2\u003e\u003cp\u003eThe mean age of the sample was 37 years old (SD\u0026thinsp;=\u0026thinsp;9.1). Most participants were female (n\u0026thinsp;=\u0026thinsp;9), of European ethnicity (n\u0026thinsp;=\u0026thinsp;9), and had a university education (n\u0026thinsp;=\u0026thinsp;11). A similar number of participants had CD (n\u0026thinsp;=\u0026thinsp;5) and UC (n\u0026thinsp;=\u0026thinsp;6), most were diagnosed less than 5 years ago (n\u0026thinsp;=\u0026thinsp;8; see Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e for sample sociodemographic and clinical characteristics).\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003e\u003cem\u003eSociodemographic and Clinical Characteristics of Participants\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCharacteristics\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eParticipants\u0026nbsp;(n\u0026thinsp;=\u0026thinsp;12)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eGender\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEthnic group\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEuropean\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAsian\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOther\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEducation level\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBachelor\u0026rsquo;s degree\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e10\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePostgraduate degree\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSchool certificate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eRelationship status\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eIn a relationship\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eLiving arrangements\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFamily\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e10\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFriends/flatmates\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEmployment\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFull-time\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePart-time\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHomemaker\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eDiagnosis\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUlcerative Colitis\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCrohn\u0026rsquo;s Disease\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eIndeterminate Colitis\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePharmacological Treatment\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e5-Aminosalicylic Acid\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCorticosteroids\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eImmunomodulators\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBiologics\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSurgery\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eOther long-term conditions\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNone\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePhysical\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePsychological\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eTime since diagnosis\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNewly diagnosed (\u0026lt;\u0026thinsp;5 years ago)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eLong standing (\u0026gt;\u0026thinsp;5 years ago)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e\u003ch2\u003eQualitative Analysis\u003c/h2\u003e\u003cp\u003eFour key themes were identified when exploring challenges and recommendations for improving support in IBD care in New Zealand: 1) Trust and Mistrust, 2) Care not Cure, 3) Educate, Adhere, Empower, and 4) the Dynamics of Coping and Adjustment. These themes and their subthemes are depicted in Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e\u003ch2\u003eTheme 1: Trust and Mistrust\u003c/h2\u003e\u003cp\u003eTrust and mistrust shaped pre-diagnostic and early-stage management with IBD, impacting participants' relationships with their HCPs, their bodies, and treatment plans.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003eChaos of Diagnosis\u003c/h2\u003e\u003cp\u003eParticipants experienced delays in diagnosis due to IBD\u0026rsquo;s unpredictable nature. Assessments during periods of remission could often missed disease markers. These misdiagnoses and symptom dismissal could foster mistrust and therefore made self-advocacy essential.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip; I proactively asked for care... Unfortunately you need the knowledge and experience\u0026hellip;You have to advocate for yourself\u0026hellip; because they [doctors] don\u0026rsquo;t know it all.\u0026rdquo;\u003c/em\u003e (Female, 41, IC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eSelf-versus-Body\u003c/h2\u003e\u003cp\u003eMany participants described feeling disconnected from their bodies and identity during the chaotic diagnostic period, including feeling a loss of control and trust. Participants also described experiencing anger toward their bodies and a sense of forgiveness post-diagnosis.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Well, you've sort of faced like months of being disconnected from your own body because your body is doing its own thing that you don't want it to be doing and you don't have control.\u0026rdquo;\u003c/em\u003e (Female, 37, CD)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I suppose before that [IBD diagnosis], I felt really angry with my body\u0026hellip; There was almost like a forgiveness that happened when I got the diagnosis.\u0026rdquo;\u003c/em\u003e (Female, 40, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003eHarmony in Healthcare\u003c/h2\u003e\u003cp\u003e Participants highlighted the importance of their relationship with their HCPs given the unpredictable nature of their IBD journey which was often shaped by trial and error. Trust was key and described as being built through perceived competence, empathy, and open communication. Perceived competence brought a sense of reassurance that medical needs were being appropriately managed, while empathy and open communication fostered emotional safety easing the stress and uncertainty of navigating treatment options.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Having a relationship with your specialist is invaluable\u0026hellip; this is a lifelong disease, and you're dealing with lots of medications\u0026hellip; to have someone there that you absolutely trust, who wants the best for you and has got your back is massive.\u0026rdquo;\u003c/em\u003e\u003cb\u003e(\u003c/b\u003eFemale, 35, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eNegative experiences with HCPs occurred when participants felt no attention was given to the emotional impact of their diagnosis, and in instances where they felt dismissed.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I don't know if enough consideration is given by doctors that (an IBD diagnosis) is quite a thing to get your head around\u0026hellip;being told you'll be on drugs for the rest of your life, it's nearly quite demoralising for a while there.\u0026rdquo;\u003c/em\u003e (Female, 35, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\u003ch2\u003eTheme 2: Care not Cure\u003c/h2\u003e\u003cp\u003eThis theme highlighted the need to feel cared for by support networks while managing a life-long condition. Supportive relationships, where emotional and practical burdens could be shared, were reported as central to managing IBD. Participants valued empathy over sympathy, which could be unhelpful and further reinforce limitations.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;We should all be able to empathise with someone's situation, but you don't ever really want someone's sympathy\u0026hellip; For me, if a friend knows, I've got a flare up and drops around a meal, or offers to mow the lawn or something\u0026hellip;That\u0026rsquo;s much more helpful than anything.\u0026rdquo;\u003c/em\u003e (Female, 49, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e Participants also valued empathetic connections with peers facing similar challenges, which promoted open communication and reduced feelings of social isolation. Online groups, such as Crohn\u0026rsquo;s and Colitis NZ\u0026rsquo;s Facebook page, offered accessible support which normalised different experiences of living with IBD.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;There are support groups available. It is important to be OK to open up to someone you can trust and share that burden with them, so that you\u0026rsquo;re not doing it all by yourself.\u0026rdquo; (\u003c/em\u003eMale, 43, CD)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;In some ways, I feel very grateful because I do read some of the stuff online and go, \u0026lsquo;Oh my gosh, I'm so lucky I'm not nearly as bad as that.\u0026rdquo;\u003c/em\u003e (Female, 49, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eAlthough family support was vital, especially during early diagnosis and flares, participants felt guilt over the strain that IBD placed on relationships, particularly with dependants like children.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Suddenly I had to abruptly wean an infant off from breastfeeding\u0026hellip; then he got quite sick\u0026hellip; that was a stress on him\u0026hellip; you can't deny the timing.\u0026rdquo;\u003c/em\u003e \u003cb\u003e(\u003c/b\u003eFemale, 36, CD)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eDespite personal networks, participants reported feeling isolated during severe flares and highlighted the need for support from specialist HCP to support symptom management, nutrition, coping, and urgent care guidance. The most impactful healthcare relationship for participants was often their IBD nurse, who was described as responsive, accessible and central to their care throughout the illness journey. This included providing crucial guidance on self-management and navigating the healthcare system, especially during early diagnosis when symptoms were severe and knowledge was limited.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Having an IBD nurse\u0026hellip; was huge\u0026hellip; I could ask, \u0026lsquo;Is this normal?\u0026rdquo;\u003c/em\u003e (Female, 40, UC) \u003cem\u003e\u0026ldquo;When you have a reasonably severe IBD, your GP doesn\u0026rsquo;t really understand it\u0026hellip; you are left with your specialist and they\u0026rsquo;re very busy\u0026hellip; So there is a gap there. Having a nurse and that line to be able to talk to her was really valuable.\u0026rdquo; (\u003c/em\u003eFemale, 35, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\u003ch2\u003eTheme 3: Educate, Adhere, Empower\u003c/h2\u003e\u003cp\u003eEducation for pwIBD and the general public was seen as an important way to reduce stigma, improve understanding and patient self-management.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\u003ch2\u003eA Cycle of Stigma and Silence\u003c/h2\u003e\u003cp\u003eMost participants reported limited knowledge of IBD prior to diagnosis and noted a general lack of public awareness. The private nature of bowel-related symptoms made open discussion difficult, reinforcing embarrassment and social isolation. IBD was perceived as overlooked compared to more widely recognised conditions.\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eI felt like it was so rare, I was like, \u0026lsquo;why haven't I heard about this? Why haven't I met someone with this? Am I the first person who has it?\u0026rsquo;\u0026rdquo;\u003c/em\u003e (Female, 22, UC)\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003ePeople are really open and comfortable talking about cancer, talking about heart disease\u0026hellip; the big ones, but with something like this [IBD], it's such a private thing that people don't like to talk about it\u003c/em\u003e.\u0026rdquo; (Female, 40, UC)\u003c/p\u003e\u003cp\u003eSocial taboos and symptom invisibility made conversations challenging, perpetuating stigma and limited awareness.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;You talk to your friends and you don't want to gross them out [laughs]\u0026hellip; people ask, \u0026lsquo;How do you know when you're unwell?\u0026rsquo;\u0026hellip; it's not nice to talk about.\u0026rdquo;\u003c/em\u003e (Female, 35, UC)\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e\u003ch2\u003eNon-adherence\u0026hellip; Not My Fault!\u003c/h2\u003e\u003cp\u003eParticipants described receiving insufficient education from healthcare professionals regarding non-adherence and the risk of disease progression. Many participants were unfamiliar with managing a chronic illness and incorrectly assumed they could stop taking medication once symptoms subsided.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;A huge mistake from my side was stopping the medication... I had no idea. Did I ever ask that? No. But did I ever think I had to ask that? No. So I think there should have been a bit more proactive advice.\u0026rdquo;\u003c/em\u003e (Female, 41, IC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eNon-adherence was particularly common with early-stage treatments such as suppositories and enemas. While these therapies are generally recommended due to minimal side-effects, discomfort led several participants to discontinue using them \u0026ndash; a decision which they later regretted. Participants expressing wishing their HCPs had more clearly explained the benefits and potential consequences of discontinuing these treatments.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eWell, it\u0026rsquo;s just no fun doing enemas, is it?... I just assumed \u0026lsquo;Great, symptoms have gone. I'm better. That's dealt with. On we go, without doing bloody enemas every night!\u0026rsquo;\u0026hellip; So I stopped\u0026hellip; God, I was so stupid. But a part of me thinks they [HCPs] were stupid for not being clearer.\u003c/em\u003e\u0026rdquo; \u003cb\u003e(\u003c/b\u003eMale, 53, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\u003ch2\u003eKnowledge is Power\u003c/h2\u003e\u003cp\u003eParticipants stressed the need for individually tailored IBD education that supports health literacy and addresses holistic disease management, to promote strong patient-provider relationships, self-advocacy, and psychological wellbeing. Participants felt education should include the link between stress and IBD. Understanding this from diagnosis could help participants identify triggers and develop bodily awareness, which could support greater self-efficacy, healthier coping, and potentially reduce disease progression and severity.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I wish I knew how much stress played a part in it\u0026hellip; if I was able to learn to cope with that earlier on\u0026hellip; I might have dealt with less severe symptoms.\u0026rdquo;\u003c/em\u003e \u003cb\u003e(\u003c/b\u003eFemale, 22, UC)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;It took a couple of years to understand my triggers and symptoms\u0026hellip; I started to learn my body, I felt more in control because I could act before I got too sick\u0026hellip; Now I feel I've got some say over my illness and my body again.\u0026rdquo;\u003c/em\u003e (Female, 35, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec19\" class=\"Section2\"\u003e\u003ch2\u003eBridging the Gaps: Diagnosis to Self-Management\u003c/h2\u003e\u003cp\u003e Participants described initial IBD consultations as often being too brief, leaving unaddressed gaps in guidance on self-management, symptom recognition, and clarity on when to seek help. Many noted they didn\u0026rsquo;t know what to ask while still processing their diagnosis.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eIt's so hard to be your own advocate if you don't know what you're looking out for.\u0026rdquo;\u003c/em\u003e (Female, 30, CD)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eParticipants made several recommendations to help navigate the early diagnostic journey, including providing clear self-management guidance early, being able to reach out for further support after the initial shock of diagnosis has lessened, guidance on what types of questions to ask, and how to identify warning signs of high disease activity or flares.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eAn information pack on what to ask, what to expect when you're first diagnosed, what symptoms to lookout for, and what the normal, acceptable day to day symptoms are would be useful.\u0026rdquo;\u003c/em\u003e (Female, 30, CD)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;If they had an appointment two weeks after I was diagnosed for all of my questions\u0026hellip; I would have had time to process it\u0026hellip; even if it was someone living with it [IBD] or who had the ability to talk about it more would have been quite helpful\u0026hellip; rather than just Googling or sitting at home stressing about it.\u0026rdquo;\u003c/em\u003e (Female, 35, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec20\" class=\"Section2\"\u003e\u003ch2\u003eTheme 4: Dynamics of Coping and Adjustment\u003c/h2\u003e\u003cp\u003eThis theme explores how participants coped and adjusted to living with IBD, highlighting shifts in identity, emotional resilience, and unmet psychosocial needs.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec21\" class=\"Section2\"\u003e\u003ch2\u003eBalance, Positive Adjustment, Empowerment\u003c/h2\u003e\u003cp\u003eOptimal adjustment to an IBD diagnosis was described as being able to balance your physical health with life enjoyment. Rest, self-care, and pacing alongside daily responsibilities to maintain normalcy were emphasised.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eWhen you have a chronic illness, you realise that you can't do it all and you need to actually relax and have breaks\u0026hellip; that tension there between trying to maintain some normalcy while also recognising that you might want to slow down.\u0026rdquo;\u003c/em\u003e (Female, 37, CD)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eParticipants who achieved a sense of balance and mastery in self-management reported greater resilience, improved relationships, and empowerment. Most participants reported seeing this relationship between improving their psychosocial well-being and resulting improvements in their disease activity and quality of life. Participants who adjusted well also engaged in peer support, social media advocacy, education, and openly discussing IBD to reduce stigma.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eBeing able to educate people and talk to people about it, actually takes away the stigma for me\u0026hellip; also helping to take away the stigma for others.\u0026rdquo;\u003c/em\u003e (Female, 40, UC.)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e Adaptive coping strategies used by participants included reframing negative thoughts, practising gratitude, prioritising wellness, and seeking support. Some participants came to view their diagnosis as an opportunity and catalyst for personal growth.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I felt very negative about having [IBD] in the beginning\u0026hellip; But at this point, I realise I was given this condition because I was strong enough to deal with it\u0026hellip; it makes you realise how strong you are as a person.\u0026rdquo;\u003c/em\u003e (Female, 22, UC)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cdiv id=\"Sec22\" class=\"Section3\"\u003e\u003ch2\u003eUnmet psychosocial support needs\u003c/h2\u003e\u003cp\u003e Many participants reported that they had to actively seek out psychosocial support or came across it by chance. For some, the iACT4IBD intervention was the only mental health support they had received since being diagnosed. Unsurprisingly, the most common recommendation for future care was to incorporate routine psychosocial support from diagnosis onward. Participants criticised IBD care in NZ as overly focused on physical health, missing crucial emotional and psychological needs, especially at diagnosis and during flares.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;It was all about physical health here in New Zealand... it would be pretty common for people to be feeling depressed or anxious at the time of diagnosis\u0026hellip; giving people the opportunity to have three free counselling sessions at least, would be almost mandatory to be able to cope with a long term illness\u003c/em\u003e.\u0026rdquo; (Female, 37, CD)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eAll participants expressed that their primary motive for participating in the interviews was a desire to help others living with IBD and hopefully improve psychosocial support available in NZ in the future.\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThis study explored the psychosocial challenges and support needs of people living with IBD in New Zealand, offering insights to guide intervention development and integration of psychological care into existing services. Extending prior research, which often focuses on specific populations or clinical settings, this study provides a broader understanding of patient experiences across the IBD journey, from diagnosis to ongoing management. Four key themes reflect distinct and globally relevant challenges: trust in healthcare, the shift from curative to supportive care, education and empowerment, and coping and adjustment.\u003c/p\u003e\u003cdiv id=\"Sec24\" class=\"Section2\"\u003e\u003ch2\u003eKey Challenges\u003c/h2\u003e\u003cp\u003eMistrust in healthcare providers arose when participants felt their pre-diagnostic concerns were dismissed, creating barriers to timely diagnosis and undermining wellbeing. This aligns with prior research in NZ and internationally [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e], highlighting the importance of trust and effective communication in early IBD recognition.\u003c/p\u003e\u003cp\u003eStructural and knowledge-based barriers, including limited access to specialists and insufficient guidance, further complicated care. NZ faces a 20% shortage of gastroenterologists [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e], and specialist IBD burses, crucial for bridging care gaps, are also in short supply [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e]. Limited health literacy and self-management skills contributed to early treatment non-adherence and poorer outcomes, underscoring the need for both workforce expansion and accessible patient resources.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec25\" class=\"Section2\"\u003e\u003ch2\u003eEstablishing and Maintaining Healthy Coping and Adjustment\u003c/h2\u003e\u003cp\u003eCoping and adjustment were shaped by the unpredictable nature of IBD. Participants described a \u0026lsquo;trial and error\u0026rsquo; process to understand their symptoms and treatments, consistent with prior NZ research [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. Participants who reported positive adjustment to IBD still described the ongoing daily cost-benefit analyses required for self-management, consistent with previous research [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e]. Unsurprisingly, social support in navigating these experiences, particularly from those with shared experiences, was highly valued.\u003c/p\u003e\u003cp\u003eThe self-versus-body sub-theme demonstrated the identity challenges patients face following an IBD diagnosis, including a disconnect between one\u0026rsquo;s perceived self and physical state. Participants described detachment from their bodies and incongruence between their past 'healthy self' and their 'ailing' state at early diagnosis. Feeling a lack of control over the body and altered body image are common findings across qualitative research in IBD [\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e]. This grieving process between the self pre and post-IBD diagnosis and the need to make peace with a new reality of this lifelong condition has been described in qualitative research both in NZ [\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e] and the UK [\u003cspan additionalcitationids=\"CR58\" citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e]. This sense of separation can arise when an illness feels abnormal and uncontrollable, heightening awareness of previously taken-for-granted health [\u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e]. Part of this process for some, appeared to be grieving the loss of their previous identity and adjusting to limitations created by IBD. Many participants eventually felt a re-alignment of self and body and an increased sense of control once they had the appropriate knowledge and coping skills to self-manage their condition.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec26\" class=\"Section2\"\u003e\u003ch2\u003eStigma and Invisibility\u003c/h2\u003e\u003cp\u003e Participants reported difficulties in seeking emotional support from their social networks due to the stigma and invisibility of IBD symptoms, which led to feelings of isolation despite care from partners and family. Discussing symptoms such as diarrhoea and rectal bleeding was often perceived as embarrassing and taboo. This stigmatised IBD identity, feelings of \u0026lsquo;otherness\u0026rsquo;, and invisibility of living with IBDhas been highlighted in a previous research [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e, \u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e]. Previous NZ research suggests stigma may be particularly heightened for specific populations, such as those living in rural, close-knit communities [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e] and adolescents [\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e]. Stigma can therefore ultimately impact both emotional and physical health via social withdrawal and isolation [\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e].\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec27\" class=\"Section2\"\u003e\u003ch2\u003eRecommendations\u003c/h2\u003e\u003cdiv id=\"Sec28\" class=\"Section3\"\u003e\u003ch2\u003eIncrease Public Awareness of IBD\u003c/h2\u003e\u003cp\u003ePublic awareness of IBD symptoms, prevalence, and impact is limited both in NZ and globally [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e]. Raising awareness could reduce the burden on pwIBD (in regards to fears of disclosure and stigma) and improve visibility of IBD in the healthcare system [\u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e]. Effective education could include both public awareness campaigns and specialised education to support primary care providers in recognising IBD symptoms to ensure early referrals and investigations.\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\n\u003ch3\u003eSupport Before and at Early Diagnosis\u003c/h3\u003e\n\u003cp\u003eInformation provision and support should be routinely incorporated into IBD care both before and after diagnosis. For example, providing individuals with information about gut symptoms, what to expect and strategies for symptom management may help reduce anxiety. Additionally, providing a follow-up appointment after diagnosis of IBD would allow patients time to process information and seek further clarification to support self-management. Similarly, patients from rural NZ highlighted the importance of HCPs repeating information throughout the IBD journey, given how overwhelming diagnosis can be and how its relevance changes over time [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eParticipants in the current study who felt dissatisfied or lost at diagnosis frequently sought information from external sources, such as online platforms, which could be overwhelming or inaccurate. Information seeking is common in IBD, with one study finding that 61% and 92% of newly diagnosed patients use the internet to seek information prior to and after their first consultation respectively. Many reported dissatisfaction or increased concerns after their gastroenterologist visit. These findings emphasise the importance of providing patients with accurate information, and signposting them to reliable resources, such as those provided by NGOs.\u003c/p\u003e\u003cdiv id=\"Sec30\" class=\"Section2\"\u003e\u003ch2\u003ePromoting Holistic Care\u003c/h2\u003e\u003cp\u003eParticipants in the current study and previous qualitative work in NZ [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e] have highlighted the need for a holistic approach to IBD care, that focuses not only on medications but also lifestyle changes. Additionally, this holistic care should focus on establishing a positive relationship between patients and the healthcare team. Positive relationships with IBD HCPs were marked by empathy, care, and trust, which facilitated open communication and effective collaboration in health decision-making. It is important that patients feel listened to and not like \u0026ldquo;just another IBD patient\u0026rdquo; [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. A trusting and effective relationship between patients and HCPs in IBD promotes positive self-management behaviours, such as medication adherence [\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e] and the development of effective coping skills [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR65\" class=\"CitationRef\"\u003e65\u003c/span\u003e], which can ultimately enhance quality of life and overall health outcomes [\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR67\" class=\"CitationRef\"\u003e67\u003c/span\u003e]. A particularly valued part of the IBD care team is IBD nurses, who participants described as crucial links between themselves and the specialist to support their self-management. Although ensuring IBD nurses are part of IBD care teams is a funding and governance issue, it is important to consider the support this role brings and how other HCPs in IBD could provide this where possible.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec31\" class=\"Section2\"\u003e\u003ch2\u003ePsychosocial Interventions for IBD\u003c/h2\u003e\u003cp\u003eThe current research highlighted that holistic IBD care should include integrated psychological support as part of multidisciplinary treatment plans. Participants described experiencing care as being solely focused on physical health. Previous research in IBD [\u003cspan citationid=\"CR68\" class=\"CitationRef\"\u003e68\u003c/span\u003e] has suggested that providing psychosocial care within two weeks to six months post-diagnosis could help address concerns with trained professionals. While the integration of formal psychosocial support requires resources [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e], an initial approach could be training gastroenterology teams to deliver effective communication and support which acknowledges common psychosocial challenges and signposts patients to resources such as charity support. Discussing IBD-related concerns with patients is vital for follow-up consultations. Options for delivering more formalised support could include allied HCPs such as health coaches or peer-to-peer support from individuals with long-term IBD. Additionally, recent work suggests that routine mental health screening and digital, therapist-assisted psychological support is feasible to implement into an IBD service with minimal additional resources [\u003cspan citationid=\"CR69\" class=\"CitationRef\"\u003e69\u003c/span\u003e]. These scalable, digital approaches may present potential avenues for implementing integrated care within services.\u003c/p\u003e\u003cp\u003eThe current study also highlights potential targets for future psychosocial IBD interventions. In the current study, patients discussed positive adjustment and resilience which they built over time in managing their IBD. Psychological resilience, defined as the ability to recover from adversity, has been linked to improvements in disease activity and quality of life in IBD patients, fewer surgeries in those with Crohn's disease [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e], and greater life satisfaction over time [\u003cspan additionalcitationids=\"CR71 CR72 CR73 CR74\" citationid=\"CR70\" class=\"CitationRef\"\u003e70\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR75\" class=\"CitationRef\"\u003e75\u003c/span\u003e]. This suggests that interventions to enhance coping skills and promote resilience may result in positive adjustment and ultimately improved IBD outcomes.\u003c/p\u003e\u003cdiv id=\"Sec32\" class=\"Section3\"\u003e\u003ch2\u003eSTRENGTHS AND LIMITATIONS\u003c/h2\u003e\u003cp\u003ePrimary strengths of this study include utilising stakeholder input via comprehensive consultations with clinicians and expert IBD health care professionals on study design, as well as considerations of reflexivity and the use of multiple co-coders and researchers with lived experience to ensure transparency and validity in the findings. The generalisability of the findings may be limited given this study was nested within the iACT4IBD study whereby participants likely represented a more motivated group.\u003c/p\u003e\u003cp\u003eReflexivity also presented unique challenges. During analysis, differences in data interpretation between coders with and without lived experience were highlighted. However, this prompted discussions that helped address instances of \u0026lsquo;over-interpretation\u0026rsquo;. Additionally, the interviewer\u0026rsquo;s disclosure of their IBD status with participants likely fostered trust and encouraged more open sharing enriching the data. Co-coding proved essential for capturing the nuances of this approach and the data.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec33\" class=\"Section3\"\u003e\u003ch2\u003eCLINICAL IMPLICATIONS AND FUTURE DIRECTIONS\u003c/h2\u003e\u003cp\u003eThe findings of this study resulted in clear recommendations for improvements needed to provide holistic, integrated IBD care within NZ. This includes suggestions for more formalised psychosocial interventions, as well as suggestions for how HCPs could improve support and communication in routine care. These findings contribute to the international literature by highlighting the need for holistic, patient-centred approaches to IBD care that address psychosocial dimensions often overlooked in routine practice.\u003c/p\u003e\u003cp\u003eFuture research could utilise the current findings to develop psychosocial interventions for individuals with IBD in NZ. Future studies should assess the cost-effectiveness of any proposed solutions, such as integrating psychosocial support/interventions and increasing the number of IBD nurses within services, and ensure the perspectives of both patients and HCPs are captured to support effective future implementation. Future research might also consider how to identify psychosocial needs in pwIBD, such as the use of routine mental health screening in IBD care. This could include existing illness and IBD-specific measures of distress [\u003cspan citationid=\"CR69\" class=\"CitationRef\"\u003e69\u003c/span\u003e, \u003cspan citationid=\"CR76\" class=\"CitationRef\"\u003e76\u003c/span\u003e]. Lastly, a key finding from this study was the desire for more education around medication adherence and common treatments in IBD, in particular when newly diagnosed. We are currently planning to incorporate a new education module into the iACT4IBD online intervention to specifically address concerns regarding medication adherence in early stage IBD.\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"CONCLUSION","content":"\u003cp\u003eThis study set out to explore the challenges of living with IBD in NZ, with an emphasis on psychosocial support needs. A key objective was to gather insights and recommendations for improving psychosocial care throughout the treatment journey of individuals diagnosed with IBD. Qualitative findings highlighted the difficulties participants faced not only at the time of diagnosis but also throughout their ongoing experience of living with IBD. The recommendations and practical strategies identified in this study offer valuable guidance for developing more holistic and integrated IBD care in NZ and globally.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eIBD \u0026ndash; inflammatory bowel disease\u003c/p\u003e\n\u003cp\u003eCD \u0026ndash; Crohn\u0026rsquo;s disease\u003c/p\u003e\n\u003cp\u003eUC \u0026ndash; ulcerative colitis\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eACT \u0026ndash; Acceptance and Commitment Therapy\u003c/p\u003e\n\u003cp\u003eHCP \u0026ndash; healthcare provide"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions and acknowledgements:\u003c/strong\u003e S.P. and A.S. formulated the study\u0026apos;s design and framework. S.P. conducted the interviews and S.P. and K.B. performed the coding and data analysis, with S.E and A.S. assisting in the analysis. S.P. and A.J. drafted the manuscript. All authors reviewed, edited, and approved the final manuscript. The authors express gratitude to the academic and clinical consultants and participants for their valuable time and expertise.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;No funding was received for this study and the authors have no conflicts of interest.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eBaumgart DC, Carding SR. Inflammatory bowel disease: cause and immunobiology. \u003cem\u003eThe Lancet\u003c/em\u003e. 2007;369:1627\u0026ndash;1640.\u003c/li\u003e\n\u003cli\u003eYeshi K, Ruscher R, Hunter L, et al. 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Development and psychometric properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): a new tool to measure disease-specific distress. \u003cem\u003eInflammatory Bowel Diseases\u003c/em\u003e. 2018;24:2068\u0026ndash;2077. \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"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":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"inflammatory bowel disease, psychosocial support, qualitative study, thematic analysis, Framework Method","lastPublishedDoi":"10.21203/rs.3.rs-7984369/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7984369/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eExisting evidence demonstrates that inflammatory bowel disease (IBD) profoundly impacts physical, psychosocial and emotional well-being, yet psychosocial support is limited in routine care in Aotearoa New Zealand (NZ). This qualitative study aimed to explore the lived experience of adults diagnosed with IBD in NZ, focusing on psychosocial challenges and patient-driven recommendations for improving support during diagnosis and early disease management.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eTwelve adults with IBD participated in semi-structured interviews as part of a nested qualitative study. Data were analysed using the Framework Method of thematic analysis to identify key patterns in participants\u0026rsquo; experiences.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eFour main themes reflected the experience of being diagnosed with IBD: 1) Trust and Mistrust, 2) Care not Cure, 3) Educate, Adhere, Empower, and 4) Dynamics of Coping and Adjustment. Participants described difficulties navigating the healthcare system, coping with changes in body and identity, and managing the psychological burden of living with a chronic illness. A consistent lack of integrated psychosocial support was reported. Participants emphasised the need for improved health literacy, support for medication adherence, and tailored psychological care. Their suggestions underscored the importance of embedding psychosocial services within routine IBD management.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003eAdults newly diagnosed with IBD in NZ face substantial psychosocial challenges that are not adequately addressed in current care models. Integrating psychosocial support into routine IBD care could alleviate patient burden and enhance health system responsiveness. These findings offer critical insights for developing more holistic, patient-centred approaches to IBD care in NZ and similar healthcare contexts.\u003c/p\u003e","manuscriptTitle":"A Qualitative Study Exploring Psychosocial Care in Inflammatory Bowel Disease: Lessons from Aotearoa New Zealand","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-11-17 10:01:27","doi":"10.21203/rs.3.rs-7984369/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"d2dc9fd8-244a-458d-91d5-fc2395d09115","owner":[],"postedDate":"November 17th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-05-17T05:08:09+00:00","versionOfRecord":[],"versionCreatedAt":"2025-11-17 10:01:27","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7984369","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7984369","identity":"rs-7984369","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}