Children and young people's experiences of living with rare diseases: An integrative review.

Details

Serval ID
serval:BIB_3F3BF0DB1EEE
Type
Article: article from journal or magazin.
Publication sub-type
Review (review): journal as complete as possible of one specific subject, written based on exhaustive analyses from published work.
Collection
Publications
Institution
Title
Children and young people's experiences of living with rare diseases: An integrative review.
Journal
Journal of pediatric nursing
Author(s)
Somanadhan S., O'Donnell R., Bracken S., McNulty S., Sweeney A., O'Toole D., Rogers Y., Flynn C., Awan A., Baker M., O'Neill A., McAneney H., Gibbs L., Larkin P., Kroll T.
ISSN
1532-8449 (Electronic)
ISSN-L
0882-5963
Publication state
In Press
Peer-reviewed
Oui
Language
english
Notes
Publication types: Journal Article ; Review
Publication Status: aheadofprint
Abstract
Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseases and 50-75% of all rare diseases affect children. The purpose of this review was to critically appraise and synthesize existing literature relating to the impact of rare diseases on children's day-to-day lives.
An integrative literature review was conducted using the CINAHL Plus, PsycINFO, and PubMed databases. Studies were included if they were a primary source was published between the years 2005 and 2019 and written in the English language.
Eight primary sources met the inclusion criteria.
Seven main themes emerged from the review as follows: (i) the experience of stigmatisations, (ii) self-consciousness, (iii) restrictions in independent living, (iv) developing resilience/coping strategies, (v) psychological and emotional impact, (vi) social impact vs social connectedness and (vii) transition challenges.
The experience of having a rare illness differed across different age groups. Children (typically aged 3-10) with rare diseases generally view themselves and their lives the same way like their healthy peers. They were more likely to report being adaptive and resilient than those aged 12 or older. Young people reported being different compared to young children, and they faced numerous challenges related to their illness.
To provide the best possible level of care for children and families with rare disorders, health services must be informed and equipped to provide the necessary supports specific to the unique needs of children and young people living with rare diseases.
Keywords
Children, Experience, Integrative review, Rare diseases, Young people
Pubmed
Create date
05/12/2022 15:19
Last modification date
09/12/2022 6:48
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