Psychological Care for People with Inflammatory Bowel Diseases: Exploring Consumers’ Perspectives to Inform Future Service Co-design

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 [8‐10]. 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.

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.

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.