Crohn’s Disease and the Young Couple: An Interpretative Phenomenological Analysis

Nutting, Ruth; Grafsky, Erika L.

doi:10.1007/s10591-017-9451-9

Cited by 8 publications

(25 citation statements)

References 20 publications

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“…I don't feel like I'm living up to the standards that I want for wife and mom, that's one of my biggest struggles." [64] Experiencing physical symptoms of IBD or side-effects from medications served as a reminder of the disease, evoking a feeling of being damaged. Individuals expressed concerns that visible marks of the disease such as weight change, scars, and skin sores would make them "look sickly" [49] and highlight what they felt was an ugly and unattractive illness to others.…”

Section: Reduced To a Labelmentioning

confidence: 99%

A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease

Muse

Johnson

David

2021

IJERPH

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Inflammatory bowel disease (IBD) consists of Crohn’s disease and ulcerative colitis, chronic conditions involving inflammation and ulceration of the gastrointestinal tract. Individuals with IBD may be susceptible to experiencing health-related stigma: experienced, perceived, or internalised social exclusion, rejection, blame, or devaluation resulting from negative social judgements based on the disease. This qualitative research synthesis draws together findings from 38 studies describing lived experiences to develop a unified interpretative account of the experience of stigma in IBD. Analysis developed two categories: ‘The IBD journey’ explores the dynamic ways in which having IBD impacted on individuals’ self-identity and ‘a need to be understood’ examines the tension between wanting to be understood whilst feeling their true experiences needed to be hidden from or were misjudged by the social sphere. The overarching concept ‘feeling of otherness’ highlights that, rather than a static, binary experience, individuals moved across a continuum ranging from the excluding experience of feeling stigmatised and othered, to the inclusive experience of integration. Individuals fluctuated along this continuum across different physical, social, and health contexts. Psychological adjustment to IBD, drawing on experience of adaptive coping, and reconnecting with valued others through illness disclosure strengthened stigma resistance during more challenging times.

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Section: Reduced To a Labelmentioning

confidence: 99%

A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease

Muse

Johnson

David

2021

IJERPH

View full text Add to dashboard Cite

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“…Young adults who are confronted with a chronic disease are often embarrassed and resentful because of the greater degree of physical and emotional dependence they experience at a time when, socially, they should be active, healthy, successful. These feelings of embarrassment can be very important to consider concerning even the earliest deeper love relationships that they find themselves experiencing [ 41 ]. Given that IBD is often diagnosed in young adulthood, a time when building intimate relationships and sexuality are particularly important, the difficulties relating to body image emerge with particular relevance at this stage.…”

Section: Resultsmentioning

confidence: 99%

“…Future planning is often hindered by increased anxiety and ambiguity about the disease trajectory. Chronic illness can impact the decision for bearing and raising children, because of worries about the implications of IBD [ 41 ]. According to Calvet et al [ 74 ], some patients with UC report that illness influences their decision to have a baby (17.2%) or their ability to take care of children (40.7%), with higher percentages among women and in younger people [ 87 ].…”

Section: Resultsmentioning

confidence: 99%

The evolution of IBD perceived engagement and care needs across the life-cycle: a scoping review

Volpato

Bosio

Previtali³

et al. 2021

BMC Gastroenterol

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Background The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working, and interpersonal. Aims In this article, we want to identify the nature and extent of the research evidence on the life experiences, the perceived engagement, the psychological, social care and welfare needs of people affected by IBD across the lifecycle. Methods Following the approach set out by Arksey and O’Malley and the PRISMA extension for scoping reviews, we conducted a scoping review in March 2019 and closed the review with an update in October 2019. It was performed using electronic databases covering Health and Life Sciences, Social Sciences and Medical Sciences, such as PubMed, Medline, Embase, Scopus, Cochrane, Web of Science, PsycInfo. Results We identified 95 peer-reviewed articles published from 2009 to 2019, that allowed to detection the main needs in children (psychological, need to be accepted, physical activity, feeding, parent style, support, social needs), adolescents (to understand, physical and psychological needs, protection, relational, gratitude, respect, and engagement) and adults (information, medical, psychological, social, work-related, practical, future-related, engagement). Although the literature confirms that the majority of the IBD units have planned provision for the different types of transitions, the quality and appropriateness of these services have not been assessed or audited for all the kinds of challenges across the life cycle. Conclusions The literature shows the relevance of organizing a flexible, personalized health care process across all the critical phases of the life cycle, providing adequate benchmarks for comparison in a multidisciplinary perspective and ensuring continuity between hospital and territory.

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“…Chronic illness can impact on the decision for bearing and raising children, because of worries about the implications of IBD (39). According to Calvet et al (67), some patients with UC report that illness in uences their decision to have a baby (17.2%) or their ability to take care of children (40.7%), with higher percentages among women and in younger people (80).…”

Section: Needs Related To the Futurementioning

confidence: 99%

“…Young adults who are confronted with a chronic disease are often embarrassed and resentful because of the greater degree of physical and emotional dependence they experience at a time when, socially, they should be active, healthy, successful. These feelings of embarrassment can be very important to consider in relation to even the earliest deeper love relationships that they nd themselves experiencing (39). Given that IBD is often diagnosed in young adulthood, a time when building intimate relationships and sexuality are particularly important, the di culties relating to body image emerge with particular relevance at this stage.…”

Section: Psychological Needsmentioning

confidence: 99%

The Evolution of IBD Perceived Engagement and Care Needs Across the Life-Cycle: A Scoping Review

Volpato

Bosio

Previtali³

et al. 2020

Preprint

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Background: The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working and interpersonal.Aims: In this article, we want to identify the nature and extent of the research evidence on the life experiences, the perceived engagement and the psychosocial and medical needs of people affected by IBD across the lifecycle. Methods: Following the approach set out by Arksey and O’Malley and the PRISMA extension for scoping reviews, we conducted a scoping review in March 2019 and closed the review with an update in October 2019. It was performed using electronic databases covering Health and Life Sciences, Social Sciences and Medical Sciences, such as PubMed, Medline, Embase, Scopus, Cochrane, Web of Science, PsycInfo.Results: We identified 95 peer-reviewed articles published from 2009 to 2019, that allowed to detect the main needs in children (psychological, need to be accepted, physical activity, feeding, parent style and support, social needs), adolescents (to understand, physical and psychological needs, protection, relational, gratitude, respect and engagement) and adults (information, medical, psychological, social, work-related, practical, future-related, engagement). Although the literature confirms that the majority of the IBD units have planned provision for the different types of transitions, the quality and appropriateness of these services have not been assessed or audited for all the kind of challenges across the life cycle. Conclusions: The literature shows the relevance of organising a flexible, personalised health care process across all the critical phases of the life cycle, providing adequate benchmarks for comparison in a multidisciplinary perspective and ensuring continuity between hospital and territory.

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Crohn’s Disease and the Young Couple: An Interpretative Phenomenological Analysis

Cited by 8 publications

References 20 publications

A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease

A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease

The evolution of IBD perceived engagement and care needs across the life-cycle: a scoping review

The Evolution of IBD Perceived Engagement and Care Needs Across the Life-Cycle: A Scoping Review

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