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This research investigates Kumpfer’s resilience framework regarding the factors impacting resilience in adults with inflammatory bowel disease (IBD), particularly considering the chronic nature of this disease. Eight participants with a clinician-confirmed IBD diagnosis were recruited from Facebook support groups and offered structured interviews based on their lived experiences. Through Braun and Clarke’s [4] thematic analysis, three major key themes emerged: the challenges of living with IBD, the power of connection and support, and embracing change. Participants emphasised the importance of having a positive attitude, a supportive social circle, and proactively learning about their health as factors critical to resilience. In contrast, stigma and a lack of public awareness emerged as major barriers to resilience. Similar to earlier studies, those who coped well with changes were more likely to have had better processes and outcomes in their resilience journey. This broader understanding of IBD and resilience from within and outside the patient further enhances previous knowledge regarding resilience in the context of chronic disease. This study confirms that resilience is a flexible and complex process influenced by internal and external factors, which, in turn, enhances wellbeing and quality of life for people with IBD.
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Introduction
Resilience is commonly defined as the capacity to adapt positively following adversity, thus enabling individuals to overcome challenges [32]. While some view resilience as a fixed trait that equips a person with the ability to defeat difficult challenges [3, 24], others emphasise it as a dynamic process shaped by circumstances [21, 37]. More recent perspectives describe it as an adaptive system of recovery strategies that promote personal survival and functioning despite hardship as well as supporting others [2, 16].
In medicine, resilience is considered a protective resource that helps individuals to cope with physical and psychological stressors and maintain wellbeing [2]. Specifically in chronic illness, resilience is known to support patients in managing condition-related challenges and sustaining quality of life, and it has been previously described as “successful adaptation despite suffering” [27]. This is particularly relevant to inflammatory bowel disease (IBD), a lifelong condition affecting over 500,000 people in the UK according to Crohn’s & Colitis UK [6]. Inflammatory bowel disease, which includes Crohn’s disease and ulcerative colitis, can present with gastrointestinal and systemic symptoms that significantly disrupt daily life. The main feature of IBD is the relapsing–remitting pattern, where periods of calm are disrupted by flareups associated with physical and psychological challenges, thus resulting in both visible and invisible burdens for patients [34, 38]. Much of the psychological distress related to having IBD remains unrecognised, contributing to elevated rates of anxiety, depression, and social isolation [7, 13].
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Although resilience has been identified as an important determinant of wellbeing in IBD [23, 38], research in this area is limited and relatively recent. Early work drew mainly on hospitalised cohorts, focusing on resilience during periods of acute illness [40]. Less is known about how resilience is maintained during remission, when patients are away from clinical settings but still negotiating the long-term challenges of IBD. Understanding this may inform interventions that strengthen preparedness for future flareups and support long-term self-management. Using Kumpfer’s resilience framework (KRF), this study is the first in the UK to examine resilience in IBD outside clinical contexts, exploring how personal attributes, social support, and the environment shape resilience, with the aim of informing future interventions.
Theoretical framework
The KRF was originally developed to study resilience in vulnerable adolescents [21] and emphasises interactions between individuals, their environment, and coping strategies. It has since been applied to cancer, disability, and chronic illness, including IBD [15, 33, 44]. The framework conceptualises resilience as an active process with six components: stressors, external environment, person–environment interactions, internal resilience factors, resilience processes, and positive outcomes. In the context of IBD, the illness itself and its psychosomatic demands represent the primary stressor. This framework highlights how personal and environmental factors combine to support or hinder adaptation, aligning with the view of resilience as a dynamic process rather than a fixed trait [37]. It therefore provides a suitable lens for examining collective resilience processes in individuals with IBD.
Research question
This research aims to enhance understanding of the components that determine resilience in patients with IBD to support better patient wellbeing and enrich the existing literature. The study, however, aims to resolve the following question: Which factors influence the resilience process in individuals living with IBD?
Methods
Design
This qualitative study explores factors that contribute to the resilience of patients with inflammatory bowel disease (IBD). A qualitative method was selected due to the ease with which participants’ perspectives can be captured. The study design, as well as the data collection and analysis, was informed by Kumpfer’s resilience framework (KRF). Ethical approval was acquired from the Department of Psychology Ethics Committee at the University of Portsmouth.
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Participants and setting
Participants were recruited from two active Facebook support groups—CCUK and Colitis UK—which support individuals with Crohn’s disease (CD) and ulcerative colitis (UC). Inclusion criteria required participants to be adults (18+ years) with a clinician-confirmed diagnosis of CD or UC, be residing in the UK, be fluent in English, and have internet access for Microsoft Teams (Microsoft, Redmond, WA, USA). Exclusion criteria included current hospitalisation for IBD, other medical conditions, or professional care under the researcher.
Thirteen participants initially expressed interest, but five were excluded due to incomplete questionnaires or missed interviews. The final sample consisted of eight participants, and all were interviewed remotely from their homes. The sample size appears to be adequate, as the literature indicates that high-quality semi-structured interviews require a sample size of between 5 and 25 participants [5, 39] to collect enough rich data as well as to ensure that enough data are collected prior to saturation [10]. Therefore, the sample size was guided by the principle of data saturation as a standard in qualitative research [14]. Recurring themes consistently emerged across the eight interviews, indicating that sufficient information had been collected to explore factors influencing resilience in adults with IBD. The virtual setting likely enhanced comfort and openness, consistent with research indicating that familiar environments improve the depth and quality of qualitative data collection [1]. Participants were anonymised using identification numbers (P1–P8), and no incentives were offered. All participants had been diagnosed with IBD for over 6 months, were in remission at the time of the interview, and provided informed consent. Participant demographics are summarised in Table 1.
Table 1
Participant demographics
Participant number
Age (years)
Gender
Diagnosis
Living situation
1
59
Female
Ulcerative colitis
With family (partner only)
2
64
Female
Crohn’s disease
With family (partner only)
3
58
Male
Ulcerative colitis
With family (partner only)
4
38
Female
Crohn’s disease
With family
5
47
Female
Ulcerative colitis
With family
6
34
Female
Ulcerative colitis
With family
7
62
Female
Ulcerative colitis
With family (partner only)
8
32
Male
Crohn’s disease
With family (partner only)
Materials
Participants’ demographic data were collected through an online questionnaire created using Gorilla Experiment Builder software (https://gorilla.sc/). Facebook served as the sole recruitment platform, and interviews were conducted via Microsoft Teams, which provided secure recording and transcription features.
Data collection
Recruitment involved posting invitations in six IBD-related Facebook groups, but responses were received only from Colitis UK and CCUK. Interested individuals were directed to a Gorilla Experiment Builder link to access the participant information sheet, consent form, and demographic questionnaire.
Semi-structured interviews were conducted via Microsoft Teams, lasting 30–60 min each. Questions were based on the KRF and organised into three sections:
General questions (e.g. “What were your initial thoughts and feelings about your diagnosis?”) to ease participants into the discussion.
Exploring resilience (e.g. “What does resilience mean to you in the context of living with IBD?”) to examine resilience-related coping mechanisms.
Ending questions (e.g. “What advice would you give to someone newly diagnosed with IBD?”) to conclude the interview on a reflective note.
The semi-structured format allowed for conversational flow while ensuring consistency across interviews. Rapport was built through active listening and empathy. Field notes captured nonverbal cues and contextual observations to supplement verbal data.
Data analysis
Microsoft Teams automatically transcribed the interviews, and transcripts were reviewed for accuracy by comparing them with the audio recordings. Thematic analysis, as outlined by Braun and Clarke [4], was employed to explore subjective experiences and identify patterns in the data. Data analysis combined pen-and-paper techniques for initial theme identification with NVivo software (Lumivero, Denver, CO, USA) for systematic coding and organisation [35]. This integration ensured both detailed engagement with the data and efficient, transparent analysis.
This inductive approach was particularly suited to understanding resilience in IBD. Codes were mapped to the KRF, while additional relevant codes were included to ensure a comprehensive understanding. Mind mapping visualised relationships between codes, aiding in the identification of primary themes and subthemes. Guided by the KRF, the analysis highlighted how internal and external resilience factors interacted, thereby shedding light on participants’ experiences and the ways resilience operates in the context of chronic illness.
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Results
This research pinpointed certain factors that shape the resilience of patients coping with IBD. There was a notable presence of KRF elements, but additional codes pertaining to the IBD lived experience also surfaced. There is a multifaceted scope of resilience within this population, as evidenced by three key themes and eight subthemes. A framework of resilience pertaining to IBD was constructed based on these findings (Fig. 1).
Three main themes, along with several subthemes under each, were identified through the thematic analysis. These themes are detailed below, supported by direct quotations from participants to illustrate and substantiate the findings. A comprehensive list of the major themes and subthemes is presented in Fig. 2, accompanied by a bulleted list for clarity. The main themes identified were:
1.
the challenges of living with IBD,
2.
the power of connection and support, and
3.
embracing change.
Fig. 1
Framework of resilience pertaining to inflammatory bowel disease (IBD) based on the key themes and subthemes identified in this study
Participants described the psychosocial and physical aspects of living with IBD as extremely arduous. Adopting active coping strategies is necessary to withstand these challenges, demonstrating that resilience is a process shaped by both personal approaches and external factors. These challenges are best summarised by three subthemes.
Subtheme: maintaining a positive mindset
A positive mindset emerged as a crucial factor in participants’ resilience. Despite the difficulties, participants demonstrated strong determination to “push through” and maintain a sense of normalcy. For example, one participant stated:
“I don’t want to be stuck at home to the bed, to the toilet, to the bed, to the toilet (…) I tried to push through as much as I can.” (P4)
This determination was often fuelled by goal setting and focusing on future activities that brought joy and purpose. One participant explained how their love of outdoor activities motivated their recovery:
“Part of getting fit again was so I could do the things I enjoy doing (…) it gives you an incentive just to keep going and work through this, the sort of pain of wasted muscles.” (P7)
These accounts show how intrinsic motivation fosters resilience by reframing challenges as opportunities, while also highlighting the risk of overexertion and potential long-term health consequences.
Subtheme: fighting stigma
Perceived stigma stands out as one of the most salient stressors identified by the participants concerning societal views of IBD. The socially isolating nature of the condition compounded its complexity. One participant seemed embarrassed when talking about their symptoms:
“It’s about something really personal and private (…) we want to make it a bit of a laugh just to pretend that we’re cool with it. But it is really difficult because it’s really embarrassing.” (P6)
For others, stigma extends to the workplace, where disclosure of their condition often raises concerns about career progression. One participant shared their frustration:
“I don’t want it to be a reason that things get in my way (…) I’ll turn up to work every day like everybody else.” (P4)
This combines the burden of IBD’s physical symptoms with the emotional strain of managing social and workplace norms. Participants, nevertheless, demonstrated resilience by attempting to find supportive workplaces or negotiating remote or flexible schedules, although still highlighting the absence of public IBD awareness as a chronic barrier to stigma reduction.
Subtheme: coping with symptoms
Participants employed a range of adaptive and maladaptive strategies to manage the unpredictable nature of IBD symptoms. Practical solutions, such as carrying essential items, reflected proactive planning and a sense of control:
“Every time I leave the house, I take a bag with me that’s got everything in there. Wipes, extra underwear, extra pads (…) anything I might need.” (P5)
Conversely, maladaptive behaviours, such as avoiding food to prevent symptoms, revealed the extent to which participants prioritised functionality over health:
“I could function without food, which obviously is not something you can do long term (…) you need to push through it.” (P4)
These strategies illustrate the delicate balance participants maintain between managing symptoms and maintaining their daily routines.
Main theme 2: the power of connection and support
Support from relationships and external networks plays a vital role in buffering against stress and fostering resilience. Participants described how these connections provided emotional, practical, and psychological support, thereby aligning with the external protective factors outlined in the KRF.
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Subtheme: support from partners
Partners were often described as a cornerstone of participants’ resilience, offering both emotional and practical assistance. For example, one participant reflected on the stability provided by their long-term relationship:
“We got married, and 33 years after that, we are still married (…) I could talk to her about it without her being perturbed or concerned.” (P4)
Others shared how their partners took on additional responsibilities during symptom flares, alleviating some of the pressures associated with daily life:
“My husband takes the brunt of what I have to do (…) he’ll do the cooking.” (P1)
These accounts underscore the importance of supportive relationships in mitigating the impact of IBD, as partners often adapt to the evolving demands of chronic illness. Such resilience within relationships reflects the reciprocal nature of support, where both partners actively contribute to coping strategies.
Subtheme: support from healthcare professionals
Participants consistently highlighted the significance of empathetic and responsive healthcare professionals in fostering resilience. Positive interactions with care teams instilled confidence and reduced anxiety:
“Having a good care team (…) builds my confidence and belief that everything will be OK.” (P3)
Conversely, negative experiences, such as a lack of empathy, have the potential to undermine participants’ mental health. One participant recounted a distressing interaction with stoma nurses:
“It was like they’re coming to measure me up for a coffin (…) if it wasn’t for my close friends who are positive about their stomas, I would probably have been very upset.” (P3)
These contrasting experiences highlight the pivotal role of healthcare professionals in shaping participants’ perceptions of their condition and their ability to cope.
Subtheme: sense of community
Peers with shared experiences provided participants with a sense of belonging and mutual understanding. Even indirect interactions fostered empathy and solidarity, as one participant reflected:
“I guess the people with children (…) they have no choice. So they have to get on with it (…) I do feel for them.” (P7)
Participants also expressed gratitude for their own circumstances, recognising that others faced more severe challenges:
“For me, it’s not too bad (…) I don’t know how other people with worse forms of IBD cope.” (P6)
This sense of community reinforced participants’ resilience by normalising their experiences and providing a source of comparative perspective.
Main theme 3: embracing change
Participants described a process of adjustment following their diagnosis, characterised by acceptance and a proactive approach to managing their condition. Two subthemes captured this journey.
Subtheme: acceptance and adaptation
Acceptance was a gradual process, as participants came to terms with the relapsing–remitting nature of IBD. One participant emphasised the importance of resilience in navigating these challenges:
“Resilience is a good word (…) if you don’t have that resilience to fight, to say it will get better, I can do this (…) it’s stressful.” (P5)
Others highlighted the active choices they made to adapt and maintain a positive outlook:
“You’re faced with a choice (…) you find ways to cope with it and get on with the rest of your life.” (P8)
These reflections illustrate how participants’ acceptance was not passive but rather involved deliberate efforts to reframe challenges and integrate IBD into their lives.
Subtheme: empowerment through knowledge
Participants emphasised the empowering role of reliable information in managing their condition. One participant succinctly stated:
“Knowledge is power (…) everything I say I can back up with literature references.” (P4)
For those less comfortable with independent research, healthcare professionals and peers serve as valuable sources of guidance. Structured interventions, such as cognitive behavioural therapy (CBT), also contributed to participants’ emotional resilience:
“I attended a six-week CBT course (…) I’m a lot stronger than I was six years ago.” (P5)
These accounts demonstrate how knowledge and education can empower individuals, promoting greater autonomy and control.
Discussion
This study explored the psychosocial factors shaping resilience in people with IBD, identifying a positive mindset, social support, and active learning about the illness as primary factors. Using Kumpfer’s resilience framework, the findings highlighted both congruence with the model and illness-specific complexities, such as unpredictable symptoms, societal stigma, and healthcare barriers. Although participants at times voiced frustration and uncertainty, the results emphasised that resilience can be strengthened through purposeful strategies and supportive environments. Conversely, stigma and a lack of awareness emerged as major external threats to resilience. The adaptability of the KRF to chronic illness contexts was confirmed, consistent with prior studies [15, 43]. This study did not deviate from the overarching principles of the framework; however, it added refinement by discussing the role of healthcare providers as a protective environmental determinant.
The participants’ voices illustrate the balance that exists between self-coping responses and supporting aids. Some carried essential items or took medications on holidays to mitigate the risk of flareups. These illness-specific examples parallel earlier work that has shown the importance of proactive planning for controlling chronic conditions [11, 25]. Stigma, particularly in professional settings, continues to undermine resilience. Concerns about disclosure reflected fears of limited career opportunities, despite protective legislation such as the Equality Act of 2010 [8]. Although no participants reported direct discrimination, evidence from both past studies indicates that workplace bias exists; for example, a 1992 study found that 8% of companies acknowledged that IBD could hinder promotion [28]. Some participants avoided sharing their condition at work, believing it could affect their professional growth, and highlighted the need for workplace adaptations and broader public awareness campaigns to foster inclusion.
Support offered by interpersonal relationships was associated with protection against isolation and thus reinforces previous evidence linking social connections to resilience [20, 21, 25]. However, it also introduces challenges such as dependence and partner burden, consistent with findings in other chronic illness contexts [36]. While clinicians may have limited time to conduct in-depth social or family assessments, early recognition of potential challenges is critical. Identifying patients who might benefit from additional support allows referral to appropriate specialists or programs, such as motivational exercises adapted from chronic pain care, which can enhance family resilience and balance responsibilities [30].
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Healthcare professionals are key sources of support. Participants emphasised that empathy, active listening, and professional competence help to meet the psychological and physical challenges of IBD, thus building trust and fostering hope. In contrast, disengaged interactions increase distress and undermine coping, consistent with prior research [12, 31]. While participants often relied on personal support networks to overcome these challenges, cultivating empathetic healthcare interactions remains essential. Relational care should therefore be considered an integral part of IBD management. Peer connections also contributed significantly to strengthening resilience. Social comparisons and participation in IBD communities, even in the absence of direct interactions, promotes belonging and empowerment [9, 22, 29]. In clinical settings, encouraging such networks in which supporting others also benefits the helper could bolster patients’ confidence and sense of belonging.
Acceptance, adaptation, and informed decision-making emerged as pivotal in fostering resilience and maintained coherence with the KRF’s focus on cognitive, emotional, and behavioural components at the individual level [21]. Participants able to reframe IBD as manageable align with the resilience processes described in the KRF, echoing findings in cancer research [26]. Healthcare professionals should recognise and promote such behaviours with targeted support, including patient education; counselling; and resources that enhance self-efficacy, coping strategies, and confidence in managing IBD. Moreover, information-seeking shifted participants from powerlessness to empowerment, reinforcing the value of directing patients toward reliable sources and therapeutic education [18]. It is essential to direct patients toward reputable sources of information, employing educational therapies, such as CBT, to enhance self-efficacy and acceptance of illness [19]. Clinical approaches should integrate screening for CBT needs, stigma-reduction interventions, and peer support into care, while remaining alert to maladaptive coping strategies such as food avoidance, which could lead to malnutrition. Timely referral to dietitians or mental health professionals mitigates the risk of other complications.
Strengths and limitations
This study enhances the understanding of the psychosocial aspects of IBD by capturing patients’ lived experiences through qualitative methods. Applying the KRF provided a structured yet adaptable lens for exploring resilience in this population. Limitations include the relative homogeneity of the participants, who were predominantly female, living with family, and recruited from online support groups—settings often dominated by more educated attendees, potentially limiting generalisability to the wider IBD population [42].
Focusing primarily on emotional and psychological factors rather than on medical variability means that the qualitative data from participants in remission lack quantitative resilience metrics, though they provide rich narratives. The study did acknowledge the psychological impact of IBD [7] but did not focus on individuals with more complex disease courses or active symptoms. Future research could combine validated resilience scales with a larger number of qualitative interviews from more diverse populations and assess comorbidities such as anxiety and depression to provide a more comprehensive understanding and to avoid underrepresentation of this group of patients. Participants also noted that resilience is not static, which highlights the need for temporal adaptability of the framework to changes in life circumstances, disease severity, or other factors.
Clinical implications and future directions
The results of this research study can be useful for formulating clinical care approaches. Multilevel interventions can be designed to improve resilience in IBD patients. At the personal level, early referrals to psychological therapies like CBT may assist patients in reshaping their perspectives and with learning effective coping mechanisms. Clinicians should actively encourage self-compassion while also offering practical support like management guides to foster patient activation and self-efficacy. As counselling may mitigate some of the emotional burden on relatives and improve the patient’s support network, professional recommendations can help to identify and resolve relational problems.
Patients with variable IBD symptoms may require flexible work arrangements. Clinicians play a key role in identifying these needs through early assessment and advocacy, helping to inform and shape workplace policies or suggesting modifications to existing ones. Additionally, clinicians can collaborate with advocacy groups to support public campaigns aimed at reducing chronic illness and stigma, thus promoting inclusion and normalising discussions of chronic conditions in professional and social settings. The impact of these interventions, particularly in relation to varying socioeconomic demographics, needs further examination to guarantee that all population groups have equitable access to supportive services.
Conclusion
This study contributes to the growing body of literature on resilience in IBD, highlighting its dynamic and multifaceted nature. Guided by Kumpfer’s resilience framework, the findings reveal how individuals consciously or unconsciously adapt their surroundings and perceptions to better cope with their condition. These insights emphasise the importance of resilience-focused assessments and interventions in clinical care, including the evaluation of support networks, timely referrals to mental health professionals, and facilitation of peer groups. Beyond the individual level, systemic interventions such as public awareness campaigns and inclusive workplace policies could serve as environmental protective factors, reducing stigma and fostering supportive environments. By applying and refining frameworks like the KRF to diverse contexts, healthcare providers and policymakers can develop strategies that enhance resilience, ultimately improving quality of life and long-term outcomes for individuals living with IBD.
Acknowledgements
The authors would like to thank the study participants for their time and valuable insights, which have significantly contributed to this research.
Funding
The authors declare that no financial support was received for the research, authorship, or publication of this article. Open Access funding was enabled and organised by JISC.
Declarations
Conflict of interest
I.L. Bianco and M. Hossain declare that they have no competing interests.
Clinical trial number
Clinical trial number is not applicable.
Consent to publish declaration
Consent of publish declaration is not applicable.
All procedures performed in studies involving human participants or on human tissue were in accordance with the ethical standards of the institutional and/or national research committee and with the 1975 Helsinki declaration and its later amendments or comparable ethical standards. Ethical approval was obtained from the Department of Psychology Ethics Committee at the University of Portsmouth. Informed consent was obtained from all individual participants included in the study.
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Die Annahme, dass beim außerklinischen Kreislaufstillstand (OHCA) die Zahl der notwendigen Defibrillationen den Schweregrad einer zugrunde liegenden KHK widerspiegelt, trifft wohl nicht zu. Als Selektionskriterium für eine Koronarangiografie taugt sie daher nicht.
Metastatische Rezidive sind bei Jugendlichen und jungen Erwachsenen mit Krebs häufig und verschlechtern die Prognose deutlich. Eine umfassende Kohortenstudie aus Kalifornien zeigt klare Unterschiede nach Tumorart, Stadium und Diagnosejahr.
Daten der Phase-III-Studie STELLAR sprechen für eine klinisch relevante Aktivität der Therapiekombination aus Eflornithin und Lomustin bei Personen mit rezidivierten Grad-3-Astrozytomen. Besonderheiten im Studiendesgin machen die Interpretation indes nicht ganz leicht.
Geht es nach einer aktuellen Metaanalyse, ist die kurzzeitige Verabreichung von niedrigdosierten systemischen Kortikosteroiden bei schweren Nicht-COVID-19-Pneumonien bzw. ARDS mit Blick auf das Überleben eher vorteilhaft. Die Sicherheit der Evidenz ist allerdings ausbaufähig.
