"I'm not what I used to be": A qualitative study exploring how young people experience being diagnosed with a chronic illness.
adolescent
children
chronic illness
diagnosis
long-term condition
qualitative
Journal
Child: care, health and development
ISSN: 1365-2214
Titre abrégé: Child Care Health Dev
Pays: England
ID NLM: 7602632
Informations de publication
Date de publication:
03 2019
03 2019
Historique:
received:
09
10
2018
revised:
06
12
2018
accepted:
12
12
2018
pubmed:
18
1
2019
medline:
5
5
2020
entrez:
18
1
2019
Statut:
ppublish
Résumé
Childhood long-term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood. To explore how young people experience an MS diagnosis. Qualitative study using a grounded theory approach. In-depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom. Young people's pre-illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships. Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long-term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long-term conditions achieve their academic potential and receive appropriate careers advice.
Sections du résumé
BACKGROUND
Childhood long-term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood.
AIMS
To explore how young people experience an MS diagnosis.
METHODS
Qualitative study using a grounded theory approach. In-depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom.
RESULTS
Young people's pre-illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships.
CONCLUSIONS
Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long-term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long-term conditions achieve their academic potential and receive appropriate careers advice.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
216-226Subventions
Organisme : Department of Health
Pays : United Kingdom
Informations de copyright
© 2019 John Wiley & Sons Ltd.