Introduction

Inflammatory Bowel Diseases (IBD) such as Crohn’s disease (CD) and ulcerative colitis (UC) can profoundly negatively affect a person’s quality of life [1]. Symptoms such as diarrhea, urgency, pain and fatigue are chronic and can hinder daily functioning. Psychological problems like anxiety and depression are highly prevalent [1]. Other common psychosocial issues include trauma, body dissatisfaction, disordered eating, social isolation and sexual dysfunction [2, 3]. Additionally, psychosocial problems are associated with greater healthcare burden and increased disability in IBD [4, 5].

IBD is best managed with a broad, multidisciplinary approach [6]. Where integrated, psychological care has been associated with reduced unplanned healthcare use, increased treatment adherence and improved mental health and quality of life [4, 7]. However, psychological care is often absent from IBD care settings [8,9,10]. Recent research has highlighted a desire for greater recognition of psychological concerns [11], more mental health discussion with IBD clinicians [8] and increased access to treatment options [12].

To improve IBD healthcare, psychological services and supports need to be developed, but the specific preferences and priorities of IBD consumers for these services are unknown. Increasingly, consumers are being engaged directly in public health policy and service development, to better capture need, solve problems and produce effective, targeted products [13]. Co-design is a type of consumer partnership in which end-users with lived experience actively participate in the process of service design or improvement [13]. However, the use of co-design methodology in IBD services is limited. The current study aimed to qualitatively explore the views of people with lived experience of IBD regarding what is most important in an IBD-specific psychological service. The aim is to identify the “goal standard” for high-quality, targeted IBD psychological services, so that future clinical care can be co-designed and informed by consumers.

Methods

Study Design

The design of this study was informed by qualitative content analysis (QCA) methodology. QCA focusses on the content or contextual meaning of language to gain understanding of a phenomenon of interest [14]. QCA is commonly used in health research, as data are collected directly from participants and analysis is not limited to pre-conceived ideas, so it is suited to exploring the “voice” of vulnerable populations [14, 15]. This methodology was also chosen as the existent qualitative literature on the preferences of IBD consumers for psychological care is limited. Additionally, it allows for quantification of results [16], so that major and minor themes can be identified via the reporting of code frequencies [17]. Focus groups were chosen as the data collection method for this study, as facilitation of participant interaction and discussion allows for in-depth exploration of the topic of interest [18].

Participants and Recruitment

Eligible participants were adults with a diagnosis of IBD [CD, UC or IBD-unspecified (IBD-U)] living in Australia. Convenience sampling was used, with the study advertised by two South Australian public hospital IBD services and patient organization Crohn’s and Colitis Australia via social media platforms and email. The Principal Investigator (TL) conducted eligibility screening by telephone. Participants were offered an AUD$25 voucher for their time [funded via TL’s higher degree research (HDR)].

Data Collection

Background Survey

Participants completed a brief questionnaire via online survey tool Qualtrics to collect demographic, clinical and psychological care data (see Online Resources 1 and 2 for an overview of sample characteristics).

Focus Groups

Focus groups were held virtually using the videoconferencing platform Zoom® [19] to allow participants from broader geographical locations to attend. Participants were allocated to focus groups based on preference and availability. Discussions were audio recorded and transcribed by TL. The focus groups were facilitated by TL—a trained and experienced cisgendered female health psychologist (M. Psych Health) who had no prior relationship to participants. Participants were informed TL worked in the IBD field and the study would contribute to HDR. Ten groups were held between October 2022 and April 2023 comprising a total of 30 participants (each group averaging three) and lasting 50–110 min.

The semi-structured focus group guide was pilot-tested with two authors (AC-H, SE)—see Online Resource 3 for the general structure. Following introductions, participants were informed of etiquette for group discussions and limits to anonymity given the presence of multiple individuals in a group setting. Discussions centered around an initial open question with prompts used as needed. Data analysis commenced with the first transcription and continued until no new categories were identified (i.e., theoretical data saturation). As codes and categories appeared relatively consistent after six focus groups had been completed, a summary of the main results was prepared to outline the meaning of each category and provide practical examples for clinical care. The final four groups were asked to review and critique this summary, to engage them directly in the interpretation and analysis process. Participants were given an opportunity to review the transcripts after attendance (no major revisions were made).

Consumer Review

Following completion of focus groups, the final participant recruited (P31) was invited to review a one-page updated outline of the key categories. Their expertise as a consumer with lived experience was sought to review the final results and provide feedback during two virtual interviews.

Analysis

Conventional/inductive QCA [14] was used by TL (single coder) to analyze the data. TL familiarized herself with the transcripts and reviewed these for key words. Data were broken down into initial codes and classed into sub-categories and then over-arching categories using software program Nvivo [20]. Code names were derived from the data. As above, participants in latter focus groups and the final expert consumer were invited to share their feedback on the key result categories. An audit trail was kept recording progression of data collection and analysis. A quantitative dataset of code frequencies by group, individual and overall was created. To check coding reliability [21], two authors (AC-H, SE) reviewed the coding of a data subsample (20% each) following analysis of six focus groups. All authors approved the results.

Results

Participant Sample

Fifty potential participants registered interest and were contacted: of these, eight were lost to follow-up, seven were deemed ineligible (e.g., no IBD diagnosis) and one withdrew. The remaining 34 eligible participants provided written consent. Three dropped out before focus group participation (n = 2 no response, n = 1 no suitable time).

The final participant sample comprised 31 individuals [10 identified as-men and 21 identified as-women (68%)] aged between 21 and 80 years (median = 46 years, IQR = 24), most from South Australia (84%). Sixteen had CD and 15 had UC. Disease duration ranged from 1 to 54 years (median = 7 years, IQR = 13). Twenty participants (65%) were in remission and 19 (61%) received IBD care in a public hospital setting. Most reported typically never being asked about mental health by their IBD clinician (71%), wanting to be asked more frequently (81%), and not having have access to psychological care in their IBD setting (84%). Ten participants (32%) were currently participating in psychological care, 8 (26%) had previously and 13 (42%) had no experience. Online Resource 1 summarizes all participant characteristics and Online Resource 2 participants’ experience with psychological care.

IBD Psychological Care

The analysis identified 254 codes, 38 sub-categories and 6 overarching categories. A complete list of codes, sub-categories and categories with associated frequencies is provided in Online Resource 4. Five main categories described what is most wanted in an IBD-specific psychological service: (1) People-Centered Healthcare, (2) Education and Preparation, (3) Social Connection, (4) Psychological Input, and (5) Accessible Services. An additional sixth category was identified to summarize codes about psychologically unsupportive care: (6) Psychologically Unsupportive. Figure 1 illustrates the key categories and sub-categories. Table 1 sets out illustrative quotes for the main categories and sub-categories.

Fig. 1
figure 1

Overarching categories and sub-categories with associated participant frequencies n (%). Note frequency refers to number of participants whose comments contributed to the identified category or sub-category, with percentage based on total across all focus groups (N = 30)

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Table 1 Illustrative quotations for IBD psychological care over-arching categories and sub-categories
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People-Centered Healthcare

In discussing what constitutes a “gold standard” IBD psychological service, 27 participants referred to the need for healthcare to be more people-centered. For example, 21 (70%) stated the IBD service would ideally be multidisciplinary and include a psychologist, a dietitian and dedicated nursing staff. Seventeen (56%) wanted to see a broader range of health needs addressed, such as mental health, diet and comorbid functional symptoms: “there are other aspects of this disease that affect your health in other ways…” (P11, FG3). Fourteen participants (47%) mentioned addressing psychological needs directly, with eight suggesting a standard early assessment: “not everybody needs psychological intervention, but I think the service should definitely be offered and be part of the diagnosis program, I mean, without option” (P24, FG7).

People-centered healthcare also referred to factors that are indirectly supportive. Eleven participants (37%) highlighted the importance of clinicians being experts in IBD and knowledgeable in common comorbid issues (such as mental health). A compassionate approach was mentioned as crucial by 14 (47%): “I just would have liked to have had a kind word at the beginning” (P27, FG8). Fifteen (50%) wanted greater consideration of individual factors such as age and gender. Better collaboration between clinicians, as well as between services, would likely reduce unnecessary stress (n = 12, 40%). Four participants (13%) even raised the value of ongoing research, to ensure IBD management continues to advance.

Education and Preparation

Twenty-five participants (83%) described education as a type of psychological service. Fifteen (50%) discussed benefits, including sufficient information and preparation, reduced anxiety and empowerment. Three participants commented specifically that education is therapeutic: “even though it's like it's not meant to be psychological support, it does provide psychological support, because we feel that we are listened [to]… and that someone is actually on top of it” (P1, FG6). Ten (33%) wanted education to be provided by multiple clinicians, not just their IBD doctor [e.g. (re IBD nurses) “…they are good, you know, in killing your anxiety” P9, FG6].

Eight participants (27%) reported that education is particularly vital at diagnosis, when IBD is most unfamiliar. Twenty (67%) said more information on IBD is required: “having a way of when people have been newly diagnosed… providing the right level of education… A proper baseline amount of information about the condition” (P4, FG1). IBD medications and side-effects, coping strategies, surgery, complications and diet were also identified as needing greater explanation. Psychological health and health promotion were mentioned by 7 (23%) and 9 participants (30%) respectively, as topics where further education is desired.

Social Connection

Most participants (n = 25, 83%) talked about the ideal psychological service facilitating social connection. Benefits discussed by 18 (60%) included belonging, relatability, sharing of ideas, reassurance and hope; for example: “It’s a very lonely journey… you really feel you’re running your own race… People who've got lived experience with Crohn’s should always be connected… so you can feel that you're not just going on this journey alone” (P3, FG1). Fifteen participants (50%) mentioned the usefulness of informal supports, such as family and friends, lived experience stories and consumer gatherings: “it was a meet-and-greet, you know, coffee and a bit of food. It was more like an enjoyable meet” (P27, FG8). Formal service ideas were provided by 12 (40%) and included peer advice, activity groups, social prescription and mentoring: “a peer support group… can help make connections and have that sort of sense of community” (P18, FG5). One participant also listed key requirements for a peer support worker, such as living well with IBD, being knowledgeable and providing hope.

Psychological Input

Most participants (n = 28, 93%) commented on psychological input. Eleven (37%) listed benefits such as having someone to talk to, reducing distress, receiving emotional validation, and learning practical coping tools. One referenced her own experience: “I think being able to talk to someone in a non-judgmental space about something that… is pretty embarrassing. It's just really good… the psychologist that I spoke to just had a way of making it all okay and just comfortable. And I just felt safe… being able to talk really frankly with someone about all the nitty, gritty, yucky details” (P19, FG3). Eighteen (60%) highlighted critical times for psychological input, most notably at diagnosis, acute disease flares and surgery; four also pointed out that it is important any time it is wanted and needed.

Psychological treatment targets were mentioned by 25 participants (83%). Examples of psychological issues included anxiety, stress, depression, adjustment, embarrassment, body dissatisfaction, trauma, coping and outlook: “I think positive thinking has a lot to do with how you cope” (P17, FG2). Social targets were communication, social limitations and intimacy and relationships. IBD concerns included managing symptoms, surgery, medications and uncertainty. One participant illustrated the importance of psychological input when describing her experience in hospital: “When you're in hospital and feeling scared and afraid and not sure about the future, I think it would be helpful to have like a psychologist come in and talk to you. And when you're going through those surgeries and that, because it’s quite traumatic… Looking back to that moment, I was really scared… there was no psychological support, and I feel like that's really needed” (P14, FG2).

Nine participants (30%) outlined the positive qualities they would like in a psychologist, including empathy and being a companion on the journey: “…empathize and help people process this whole new world of Crohn’s and IBD… help you navigate your own journey, holding your hand” (P15, FG4). IBD knowledge was also preferred: “with the trauma that some people have been through… you really want someone that can relate to you – maybe not from lived experience, but from at least knowledge of the medical side” (P6, FG3). Nine (30%) showed an awareness of types of psychological interventions. The intervention mentioned most was hypnotherapy (n = 4, 13%). Pastoral care and exercise were also noted as psychologically supportive approaches by two and one participant/s, respectively.

Accessible Services

All but one participant commented on service accessibility (97%). Accessibility included greater availability of clinicians (n = 12, 40%). The most desired setting for psychological care was integrated within the IBD team (n = 9, 30%), although one participant advocated for an external location. Twenty (67%) listed a variety of delivery formats such as face-to-face, phone, telehealth, online and via email, to cater to a variety of needs and preferences. Eight participants (27%) commented that IBD psychological services should be complemented with credible resources via consumer events, videos and written materials. Thirteen (43%) highlighted the importance of partners and family members also accessing psychological services: “psychological help for my wife and my children, and even further back in the early days, for my parents, would be a fantastic thought… a very, very good thing” (P16, FG2). Seven (26%) also emphasized the need for services to be promoted widely, so that people know what is offered and how it can be accessed.

Psychologically Unsupportive

A sixth overarching category summarized factors that are unhelpful for mental and emotional wellbeing [commented on by two-thirds of participants (n = 2, 67%)]. For example, 14 (47%) referred to healthcare experiences that negatively affected their emotional wellbeing: “they don’t ask how you have been feeling, or how you feel. There’s no care or bedside manner there at all… I’m just a number” (P27, FG8). Eight participants (27%) described the implications of ineffective education, including receiving either too little or too much information. Experiencing negative effects of peer support was also mentioned by 8 participants (27%); for example, one stated “there’s also the possibility of being pulled down… One I went to [support group], I was overwhelmed” (P25, FG8). Six (20%) commented on the absence of psychological care and 4 (13%) highlighted barriers to access. Essentially, these subcategories reflected the reverse of the abovementioned five main categories for IBD psychological services (see Online Resource 4 for further detail).

Consumer Review

The expert consumer’s review of the results was confirmatory. The importance of each category was reinforced, as well as the topic of IBD psychological care: “The clinician who's looking at this, they need to realize it's a duty of care… It's really important… for that gastro or that head person to lead the way on making sure that psychological services are put into their care… It’s pertinent on someone’s health, it’s huge actually!” (P31). The consumer queried whether the first category People-Centered Healthcare should be split into two, noting several sub-categories refer to consumers while others relate to clinicians. After discussion with co-authors, the category was kept intact as it was thought the sub-categories were still related.

Clinical Recommendations

Proposed clinical practice guidelines were drafted as a useful way to summarize the results and provide IBD clinicians with practical recommendations for IBD psychological care (see Online Resource 5). The guidelines were drafted by the PI based on the five key categories and their respective sub-categories—an expansion of the previous result summary discussed by latter focus groups. The expert consumer provided specific feedback and suggestions for the drafting of the guidelines.

Discussion

This qualitative study is the first to explore the priorities of IBD consumers with respect to tailored psychological services for the purpose of co-design. The findings highlight clear themes for the types of services desired by people with IBD, as well as care structures and delivery mechanisms that support psychological health. In this study, participants were asked about the ideal, perfect or “gold-standard” IBD psychological service, and the results emphasize the value of broader care components beyond individual psychological therapy.

Three of the overarching categories referred specifically to interventions: Education and Preparation, Social Connection and Psychological Input. These services have the potential to improve psychological wellbeing in different ways. For example, education improves consumer knowledge and understanding, which have been associated with higher levels of self-efficacy, medication adherence and treatment engagement [22]. In IBD, education has also been found to reduce psychological distress and improve self-management and coping [23]. Education has the potential to reduce the psychological burden of IBD.

Social connection is psychologically helpful because it offers people with IBD various emotional, practical and informational supports. The importance of peer connection is not surprising, as it is well-established that relationships and connectedness are protective for both mental and physical health [24]. In contrast, loneliness and isolation are risk factors for anxiety and depression, elevated inflammation and mortality [25]. Of note, informal social interactions (e.g., support from family and friends) were mentioned by more participants than formal activities. Thus, as a service, social connection may be about exploring and reinforcing use of a person’s current social network, or it may involve more deliberate referral to structured peer supports.

Psychological input has the potential to directly improve mental health for IBD consumers by reducing distress and increasing coping. The growing literature on psychological interventions in IBD shows short-term improvements in mood and anxiety and more consistent benefits for quality of life [26]. While some of the input discussed by participants could be provided by other IBD clinicians (e.g., “being able to talk really frankly with someone about all the nitty, gritty, yucky details” [P19, FG3]), the overall desire was for a dedicated IBD psychologist or mental health provider. Psychological intervention can treat IBD-related distress, and (as recognized by some participants) support self-management and health promotion which are important for those living with a chronic illness.

The other two main categories referred to the structure and delivery of health services: People-Centered Healthcare and Accessible Services. The message underpinning people-centered healthcare is that there are certain clinician qualities and healthcare practices that promote emotional and mental wellbeing. While past research is mixed, some evidence suggests that people-centered care is associated with greater treatment satisfaction and self-management [27]. When people are cared for by a multidisciplinary team of knowledgeable clinicians in a holistic, collaborative and compassionate manner, it makes sense that they would feel more psychologically supported.

Making services and interventions accessible is also important. Only 16% of study participants reported current access to psychological care in their IBD setting, consistent with past research [8, 10]. Of note, nearly half (42%) raised access for family members and partners—this is in line with a recent systematic review which identified the need for greater education, social support and mental health input for IBD carers [28].

This study’s findings are consistent with recent research. For example, a review of the UK national IBD standards [9] highlighted the need for greater education, holistic care, access and multidisciplinary services. They also identified a desire for more educational programs, resources, communication between IBD services and external providers, and support with mental health. Another study of consumers in the UK and Australia [11] identified three similar themes: vicious cycle of IBD and psychosocial health, the need for biopsychosocial health integration and stigma of hidden disease. Further, a Scottish co-design study found three themes important for improving IBD care: quality of life, IBD clinicians and better access, and explicit IBD care pathways [12]. The closeness of our findings with these studies investigating IBD care more broadly (i.e., not psychological services specifically) is particularly telling: it emphasizes the importance of care quality for psychological health and wellbeing.

In addition, there are parallels between this study’s results and current published IBD quality of care standards. For example, the Australian IBD Standards [6] include having multidisciplinary care, a people-centered approach and education. The presence of a psychologist and early psychological assessment are also consistent with UK IBD Standards [29]. Further, the findings are in line with the priorities of The Australian National Action Plan for IBD 2019 [30]. For instance, People-Centered Healthcare is consistent with the priority area of a skilled and accessible multidisciplinary workforce. Accessible Services has several sub-categories in common with the priority area access to responsive IBD helplines. Finally, Education and Preparation aligns with the priority area patient knowledge.

Ultimately, the aim of the current study was to ascertain the priorities and preferences of people living with IBD for psychological care to inform the co-design of future services. The proposed set of clinical practice guidelines (Online Resource 5) includes improving and/or incorporating the three interventions into IBD management and restructuring or refining practices and delivery mechanisms. It is hoped that IBD services will review these guidelines and work towards adopting the recommendations over time. For example, new care settings could use these guidelines to inform service design, while existing services could use them for improvement initiatives and business cases.

The main limitation of this study is the potential for bias (e.g., interviewer, coder, participant). However, multiple strategies were used to minimize this risk, including pilot testing the focus group guide, code checking by two additional authors and results review by participants. While only one participant reviewed the final results, the categories were the same as those reviewed by the last four focus groups. Participants were self-selected, mostly from one Australian state, and those with online access/literacy. Focus group numbers were also small (due to the challenges of coordinating availability for multiple people). However, participant views are likely transferable given the similarities with other data sources [9, 11, 12]. Future research may include IBD service audits or consumer surveys to compare current practices with the proposed guidelines to determine development priorities. Services that currently incorporate psychological care might qualitatively explore consumers’ experiences to gain insight into specific benefits and challenges. Further development of the proposed clinical guidelines is also recommended, to gain further input from both consumers and clinicians.

In conclusion, this study provides valuable insights from people living with IBD and clinical recommendations for co-designing services that better address psychological health and wellbeing. Specifically, IBD services should emphasize consumer education, social connection and psychological input. Beyond this, IBD services should work towards becoming more people-centered and accessible. It is hoped that the proposed guidelines will be used by IBD clinicians to better support the psychological health of IBD consumers.