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

Woodgate, Roberta L.; Tennent, Pauline; Barriage, Sarah; Legras, Nicole

doi:10.1177/1359105320962242

Cited by 7 publications

(37 citation statements)

References 51 publications

(66 reference statements)

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“…A qualitative interview of young patients with chronic conditions showed that their illness experience was complex and intense and they needed active support [13], which is consistent with our conclusion. For example, they wanted to be noticed and listened to when expressing their feelings, and they wanted to seek more care instead of being ignored [13]. Our results showed that young and middle-aged SSNHL patients had a variety of symptoms at the onset and wanted more care and attention as well.…”

Section: Discussionsupporting

confidence: 90%

“…Psychology, drug toxicity, rest and sleep, and noise in the environment may affect the onset of SSNHL symptoms [12]. A qualitative interview of young patients with chronic conditions showed that their illness experience was complex and intense and they needed active support [13], which is consistent with our conclusion. For example, they wanted to be noticed and listened to when expressing their feelings, and they wanted to seek more care instead of being ignored [13].…”

Section: Discussionsupporting

confidence: 88%

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Illness experience and coping styles of young and middle-aged patients with sudden sensorineural hearing loss: a qualitative study

Yuan

Wang

Chen

et al. 2021

BMC Health Serv Res

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Background The incidence of Sudden Sensorineural Hearing Loss (SSNHL) is increasing and tends to occur at a young age. The patient’s disease experience during treatment is related to their physical and mental health. Effective coping styles such as proactively solving problems and asking for help will alleviate the patients’ psychological symptoms and improve their quality of life. Aims and objectives To explore the illness experience and coping styles of young and middle-aged patients with SSNHL (age: 18–64 years), clarify the relationship between the two, and understand the psychological state and needs of the patients. Methods The purposive and maximum difference sampling method was used to conduct semi-structured interviews with 23 young and middle-aged SSNHL patients. The interview data were analyzed by Colaizzi’s seven-step analysis. Results The illness experience of young and middle-aged SSNHL patients was complex, including symptoms during the onset of deafness and emotional experience before and after diagnosis. The coping styles of young and middle-aged SSNHL patients were active and diverse, including active acquisition of information, change in living habits, and seeking the care and attention of medical staff. Illness experience and coping style influence each other: good illness experience leads to active coping styles; active coping style results in good illness experience. Conclusions The illness experience of young and middle-aged SSNHL patients includes not only physical symptoms, but also changes in psychological and emotional reactions. Good illness experience can lead patients to adopt active coping style. Active and effective coping styles, such as positive acquisition of information, change in living habits and seeking care and help, can improve patients’ illness experience.

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Section: Discussionsupporting

confidence: 90%

Section: Discussionsupporting

confidence: 88%

Illness experience and coping styles of young and middle-aged patients with sudden sensorineural hearing loss: a qualitative study

Yuan

Wang

Chen

et al. 2021

BMC Health Serv Res

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“…Although disclosure was used in some cases to obtain social support, others avoided disclosing their illness to minimize impacts on social relationships and employment. Unfortunately, concealment of a chronic illness exacerbates stress and psychological distress, creating somewhat of a catch‐22 situation for many patients 37–41 . One participant reported sometimes blaming symptoms on food poisoning instead of gastroparesis, an explanation which would be temporary and therefore less stigmatized than chronic illness.…”

Section: Discussionmentioning

confidence: 99%

“…Unfortunately, concealment of a chronic illness exacerbates stress and psychological distress, creating somewhat of a catch-22 situation for many patients. [37][38][39][40][41] One participant reported sometimes blaming symptoms on food poisoning instead of gastroparesis, an explanation which would be temporary and therefore less stigmatized than chronic illness. Several cited concerns about how their illness would be perceived by supervisors at work and two participants noted direct, negative impacts on their employment, including being laid off and missing opportunities for advancement due to their illness.…”

Section: Discussionmentioning

confidence: 99%

Stigma experiences of patients living with gastroparesis

Taft

Craven

Adler

et al. 2021

Neurogastroenterology Motil

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Introduction Stigmatization toward chronic digestive diseases is well documented. Patients perceive others hold negative stereotypes toward their disease and may internalize these beliefs as true. Because of this, stigmatization is associated with poor outcomes across disease‐related and psychosocial domains. No study to date evaluates stigmatization toward patients living with gastroparesis (GP), a poorly understood disease affecting gastric motility. We aimed to gain deep understanding of stigma in patients living with gastroparesis. Methods Patients with GP were recruited from two university‐based gastroenterology practices as well as patient advocacy support groups. Participants underwent a semi‐structured qualitative interview about their experiences with stigma related to their GP diagnosis, which were audio‐recorded and transcribed to text for analysis using a grounded theory approach. Major themes with representative quotations were documented. Results Twenty‐three patients participated. The majority were White, female, with idiopathic GP under the care of a gastroenterologist. All patients reported stigma related to GP. Seven major themes were found: stigma from healthcare providers, stigma within interpersonal relationships, GP as an invisible disease, blame, unsolicited suggestions on how to manage disease, disclosure, and stigma resistance. Conclusions This is the first study to describe stigma experiences in patients with GP. The results suggest patients experience considerable stigmatization toward their condition from multiple sources. Patients also demonstrated resistance to negative beliefs, which can serve as a protective factor for the negative effects of disease stigma. Clinicians should be aware of stigma in GP patients, including their own potential internal biases and behaviors.

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“…Despite this, there has been limited research to inform our understanding of 'what' it is that children understand about their illness, the way a young child makes decisions about 'who' they share information about their illness with, and 'how' they share that information with (Bray et al, 2015(Bray et al, , 2022Carter et al, 2017). Existing studies tend to take the perspective of older children (Lambert and Keogh, 2015;Woodgate et al, 2022). However, this study offers a nuanced and close examination of the experiences of young children living with a long-term condition across three countries, providing rich insights into key elements of health literacy from the perspective of the children themselves.…”

Section: Discussionmentioning

confidence: 99%

Health literacy among children living with a long-term condition: ‘What I know and who I tell’

Peck

Bray

Dickinson

et al. 2023

Health Education Journal

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Background: Little is known about the health literacy of children living with long-term conditions. This study aimed to gain insight into the life of children with a long-term condition in the context of health literacy, specifically their understanding of their health and the barriers and facilitators to sharing information about their condition with others. Design: Child-centred qualitative arts-based approach with children aged 6–12 years. Setting: Children participating in the study came from three countries – the UK, Australia and New Zealand. Method: A participatory arts-based qualitative child-centred approach prompted children to draw, label and use stickers, body-outlines and collage to describe elements central to health literacy. This encompassed their long-term condition, their understanding of their condition, its management and decision-making associated with sharing information about their condition with others. The sessions were audio-recorded, and reflexive thematic analysis was undertaken. Results: Four central themes related to key elements of child health literacy: (1) pragmatic understanding – what it feels like and what happens in my body; (2) management regime – what do I have to do to keep on going; (3) information sharing – I don’t tell random people; and (4) benefits of sharing – they’ve got my back. Conclusion: Children indicated a pragmatic or process type understanding of their condition and its management. Children were discerning about who they shared information about their condition with, but tended to establish a network of well-informed peers capable of providing support if needed. Despite gaps in children’s health literacy, parents and families have an important role to play in checking children’s understandings and developing critical health literacy.

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

Cited by 7 publications

References 51 publications

Illness experience and coping styles of young and middle-aged patients with sudden sensorineural hearing loss: a qualitative study

Illness experience and coping styles of young and middle-aged patients with sudden sensorineural hearing loss: a qualitative study

Stigma experiences of patients living with gastroparesis

Health literacy among children living with a long-term condition: ‘What I know and who I tell’

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