To tell or not to tell: A systematic review of the disclosure practices of children living with epilepsy and their parents

Benson, Ailbhe; O'Toole, Stephanie; Lambert, Veronica; Gallagher, Pamela; Shahwan, Amre; Austin, Joan K.

doi:10.1016/j.yebeh.2015.07.013

Cited by 53 publications

(54 citation statements)

References 68 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…To date, literature examining youth's disclosure of chronic illness has been conditionspecific. Research has focused on conditions such as epilepsy (Benson et al, 2015a(Benson et al, , 2015b, cystic fibrosis (Berlin et al, 2005), sickle cell disorder (Dyson et al, 2010), and inflammatory bowel disease (Barned et al, 2016). Human immunodeficiency virus (HIV) is perhaps the most extensively researched in terms of youth disclosure literature (e.g.…”

Section: The Centrality Of Disclosure Decisions To the Illness Experimentioning

confidence: 99%

The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study

et al. 2020

View full text Add to dashboard Cite

The aim of this paper is to illuminate findings of disclosure experiences for youth living with chronic illness using a non-categorical approach. The findings were derived from a larger qualitative study framed by social constructivist grounded theory that sought to understand youth’s involvement in healthcare decision-making in the context of chronic illness. Fifty-four youth participated in the study, ranging from 9 to 24 years. Three main themes representing the youth’s perspectives and experiences of disclosing chronic illness were identified: (1) disclosure is central to the illness experience; (2) spectrum of disclosure; and (3) navigating others’ reactions to disclosure. The findings reinforce that more emphasis on decisions related to disclosing illness in research and clinical care for youth with chronic conditions is warranted.

show abstract

Section: The Centrality Of Disclosure Decisions To the Illness Experimentioning

confidence: 99%

The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study

et al. 2020

View full text Add to dashboard Cite

show abstract

“…Disclosure has been categorised in many different ways, often reflecting the degree of control that the person has over the process. Revelatory or forced disclosure occurs when a degree of openness about their condition is forced on the person regardless of their level of preparedness or their desire to reveal this aspect of their identity [33,34]. Protective or preventive disclosure is usually selective [34], with the person purposefully disclosing the condition with the aim of gaining control over the social consequences [33]; it may be spontaneous or prompted by a person's enquiry or an unfolding situation [25].…”

Section: Introductionmentioning

confidence: 99%

“…Revelatory or forced disclosure occurs when a degree of openness about their condition is forced on the person regardless of their level of preparedness or their desire to reveal this aspect of their identity [33,34]. Protective or preventive disclosure is usually selective [34], with the person purposefully disclosing the condition with the aim of gaining control over the social consequences [33]; it may be spontaneous or prompted by a person's enquiry or an unfolding situation [25]. The type and extent of information shared during an episode or episodes of disclosure reflect the purpose of the disclosure but are generally informative about the condition and its consequences [25]; it is often limited and bounded by the need to retain control over privacy and sense of self [13].…”

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

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.

show abstract

“…Data on whether children and adolescents with epilepsy communicate their condition to their friends and what motivates them to disclose or conceal their condition are scarce. A review published in 2015 [5] found only one study from 1968 [13] that examined children's and adolescents' disclosure of an epilepsy diagnosis as its main focus. The other studies the authors identified included disclosure as either a subtheme of a larger study or a topic that incidentally emerged in interviews focused on other questions.…”

Section: Introductionmentioning

confidence: 99%

Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?

et al. 2020

View full text Add to dashboard Cite

A diagnosis of epilepsy substantially influences the lives of affected children and adolescents, and concealing the diagnosis can generate additional stress. However, little is known about whether children and adolescents communicate their diagnosis to their friends. We performed a survey at two German university hospitals. Epilepsy patients aged 6–18 years were asked why they did or did not disclose their condition to their friends. A total of 101 patients (44 female, 57 male) were interviewed. Twenty-one (21%) informed all their friends about their epilepsy, 63 (62%) informed only certain friends, and 3 (3%) did not specify. Fourteen (14%) did not inform any friends. Their reasons for informing their friends were trust in friends (47/87; 54%); questions from friends, e.g., about missed school days (29/87; 33%); a wish for friends to be informed in case of an emergency (15/87; 17%); and a desire to live openly with the condition (8/87; 9%). The reasons for not informing friends were fear of stigmatization/shame (4/14; 29%), discouragement from parents (3/14; 21%), and a wish for confidentiality (3/14; 21%). Conclusion: Most children and adolescents inform their friends about their epilepsy. Fear of stigmatization is the main reason for not informing friends about this condition. What is Known• An epilepsy diagnosis is a life-changing event for affected children and adolescents.• Having to conceal the diagnosis can be very stressful. What is New• Most pediatric epilepsy patients informed at least some close friends about their diagnosis motivated by trust in friends; questions from friends, e.g., about missed school days; and a wish for friends to be informed in case of an emergency.• Fear of stigmatization/shame, discouragement from parents, and a wish for confidentiality were the motivations for concealing the disease.

show abstract

To tell or not to tell: A systematic review of the disclosure practices of children living with epilepsy and their parents

Cited by 53 publications

References 68 publications

The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study

The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study

“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

Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?

Contact Info

Product

Resources

About