Youth and Parent Illness Appraisals and Adjustment in Pediatric Inflammatory Bowel Disease

Roberts, Caroline M.; Gamwell, Kaitlyn L.; Baudino, Marissa N.; Perez, Megan N.; Delozier, Alexandria M.; Sharkey, Christina; Grant, DeMond M.; Grunow, John E.; Jacobs, Noel J.; Tung, Jeanne; Gillaspy, Stephen R.; Mullins, Larry L.; Chaney, John M.

doi:10.1007/s10882-019-09678-0

Cited by 30 publications

(38 citation statements)

References 54 publications

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“…IBD is uncertain, unpredictable, and intrusive [3,4]. Our findings support other work on IBD [25] and conditions such as epilepsy [23] that disclosure is a process laced with uncertainty and unpredictability [18,25] particularly in relation to the potential intrusive consequences.…”

Section: Discussionsupporting

confidence: 86%

“…IBD is a "chronic, heterogeneous, relapsing and remitting condition primarily as a consequence of inflammation within the bowel lumen" [2]. This group of conditions is characterised by uncertainty, unpredictability, and the intrusiveness of symptoms and flare-ups [3,4]; common symptoms are diarrhoea, abdominal pain, weight loss, blood in the stools, and fatigue [5]. Both IBD and its associated medical management can severely negatively impact psychosocial functioning and health-related quality of life [6,7] and increase anxiety and stress [8], loneliness and depression [9,10], and other psychiatric disorders [11].…”

Section: Introductionmentioning

confidence: 99%

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“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

Carter

Rouncefield‐Swales

Bray

et al. 2020

International Journal of Chronic Diseases

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Inflammatory Bowel Disease (IBD) describes a group of conditions that includes Crohn’s disease and ulcerative colitis. Unlike some chronic conditions, to a greater or lesser extent, IBD is hidden from or invisible to others which enables concealment of the condition, especially when stigma is associated with the condition. Concealment or nondisclosure allows a means of identity management. Disclosure of a chronic condition is not a single event, and it is dependent on many factors. There is little literature that specifically addresses stigma and/or disclosure in relation to children and young people with IBD. An in-depth qualitative study was undertaken, framed by Interpretive Description and using interviews, friendship maps, and photographs within a participatory framework. Public and patient involvement and engagement (PPIE) was undertaken throughout (inception to dissemination) the study. Young people aged 14-25 years with IBD who had participated in the survey phase of the larger study self-selected to participate in interviews that focused broadly on friendship and feelings of social connectedness. Data were analysed using an iterative, interpretive approach. Preliminary themes were developed and these were explored further, and then tentative theoretical connections about friendship were developed. One superordinate theme focused on disclosure. Thirty-one young people (16 males, 15 females, mean age 18.7 years; 24 Crohn’s, 7 colitis) participated in the interviews (of these, five created friendship maps and six utilised photographs). Three discrete, but interlinked, themes were generated, revealing young people’s experiences of disclosure: to tell or not to tell; controlling the flow: the who, when, what, and how of telling; and reactions and responses to telling: anticipated and actual. Decisions about telling friends about having IBD are challenging for many young people. Having control over disclosure is not always possible, and the potential consequences can feel risky. However, most young people had positive experiences of disclosure and gained support from friends and romantic partners. Most young people downplayed the seriousness of their IBD, revealing some facets of their condition, aiming to sustain their self-identity. Only one young person had been given professional support to disclose. Provision of support and opportunities to discuss whether, when, who, and how to tell friends and what the risks and benefits may be is something that could be woven into an ongoing and wider person-centred dialogue between young people and health professionals within routine clinic visits.

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Section: Discussionsupporting

confidence: 86%

Section: Introductionmentioning

confidence: 99%

“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

Carter

Rouncefield‐Swales

Bray

et al. 2020

International Journal of Chronic Diseases

View full text Add to dashboard Cite

show abstract

“…IBD includes Crohn’s disease (CD) and ulcerative colitis (UC), and is a lifelong disease marked by episodes of remission and relapse [ 2 ]. IBD is characterised by uncertainty, unpredictability, and the intrusiveness of symptoms [ 3 , 4 ]; symptoms most commonly include diarrhoea, abdominal pain, weight loss, blood in the stools, and fatigue [ 5 ]. The incidence of IBD in all age groups is increasing worldwide [ 2 , 6 ], although the reason is unknown [ 7 ].…”

Section: What Is Ibdmentioning

confidence: 99%

“…Individuals with IBD experience potential challenges to their psychological well-being: the course of the disease is unpredictable, the treatment and management regimes frustrating. Patients talk about the symptoms of the disease often being embarrassing and socially limiting [ 3 , 11 ], which makes telling others about their condition difficult [ 12 , 13 ]. While there are few studies with adolescents and young adults (AYA) with IBD, those studies show high rates of anxiety and depression among that population [ 14 ].…”

Section: Ibd and Mental Healthmentioning

confidence: 99%

Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK: the role of disease severity, age of onset, and embarrassment of the condition

et al. 2020

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Purpose Adolescents and young adults (AYA) with Inflammatory Bowel Disease (IBD) report higher depressive symptoms and anxiety compared to healthy controls, with disease severity and abdominal pain being important factors. In the current study, building on what young people had told us in our previous work, we examined whether embarrassment of the condition, social self-efficacy, and friendship quality mediated the relationship between abdominal pain and disease severity, and mental health/well-being. We also included loneliness as a component of well-being. Methods Data on depression, anxiety, loneliness, friendship quality, social self-efficacy, and disease embarrassment were collected from 130 AYA with IBD ages 14–25 years; data on disease severity and abdominal pain were taken from their medical records. Structural Equation Modeling (SEM) was used to test the relationships between the variables. Results Using SEM, we established that higher IBD disease activity negatively impacted how AYA felt about their friendships and how embarrassed they were about their condition; embarrassment then influenced reports of mental health, including loneliness. Abdominal pain, disease onset, and social self-efficacy directly predicted internalising problems. Conclusion In this sample of 14–25-year-old patients with IBD, specifics about the disease (severity and pain) predicted poorer mental health, suggesting discussion of mental health should be part of the clinical dialogue between patient and consultant. In addition, embarrassment about their condition increased depression, anxiety, and loneliness, mediating the relationship between disease severity and well-being. Thus, it is important to consider how perceived stigma affects those with chronic illness, and those issues should be explored in clinic.

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“…Inflammatory bowel disease (IBD) is an incurable, chronic, relapsing, and debilitating gastrointestinal condition [ 1 ], which includes Crohn's disease and ulcerative colitis and IBD-unclassified. It is characterised by uncertainty, unpredictability, and the intrusiveness of symptoms [ 2 , 3 ]. Research on IBD and young people has been primarily biomedical, with scant attention paid to the psychosocial aspects of living with IBD [ 4 ], such that we know little about the challenges of IBD on peer relationships and friendships.…”

Section: Introductionmentioning

confidence: 99%

Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study

Rouncefield‐Swales

Carter

Bray

et al. 2020

International Journal of Chronic Diseases

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Inflammatory bowel disease (IBD) is an incurable, chronic, gastrointestinal condition that can constrain young people’s social relationships. Few studies have specifically explored friendships of people with IBD. This qualitative, participatory study used interviews, photographs, and friendship maps to explore friendships and friendship networks of young people with IBD. An online Young Person’s Advisory Group was actively engaged throughout the study. Thirty-one young people participated (n=16 males, n=15 female; n=24 Crohn’s disease, n=6 ulcerative colitis, n=1 IBD-unclassified; the mean age at study was 18.7 years; range 14-25 years). Findings present a metatheme “The importance and meaning of friendships” and three interwoven subthemes of “Sustaining friendships,” “Forming new friendships,” and “Letting go of friendships.” Friendship was important to the young people with IBD, providing support, but associated with challenges such as disclosure. Such challenges could be mitigated by clearer conversations with clinicians about friendships and more extensive conversations about friendships and long-term conditions in education settings.

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Youth and Parent Illness Appraisals and Adjustment in Pediatric Inflammatory Bowel Disease

Cited by 30 publications

References 54 publications

“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK: the role of disease severity, age of onset, and embarrassment of the condition

Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study

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