Exploring health-related experiences of children and young people with congenital heart disease

Yvonne Birks; Patricia Sloper; Robert Lewin; Jonathan Parsons

doi:10.1111/j.1369-7625.2006.00412.x

Exploring health-related experiences of children and young people with congenital heart disease

Yvonne Birks, Patricia Sloper, Robert Lewin, Jonathan Parsons

Health Sciences

Research output: Contribution to journal › Article › peer-review

Abstract

Objective
To determine the health-related experiences of children with congenital heart disease. Design
Qualitative, semi-structured interviews.
Participants
A purposive sample (N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England. Results
The main themes identified included: physical limitations of their condition, restrictions, attitudes of others, choices about information, coping with life and privacy.
Conclusions
This study suggests that while many of this sample of children said that they coped well with their condition some children did experience significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers and health-care professionals to allow a better understanding of what they are able to achieve.

Original language	English
Pages (from-to)	16-29
Number of pages	14
Journal	Health Expectations
Volume	10
Issue number	1
DOIs	https://doi.org/10.1111/j.1369-7625.2006.00412.x
Publication status	Published - Mar 2007

Keywords

children
congenital heart disease
qualitative
QUALITY-OF-LIFE
MAINSTREAM SCHOOL
CARDIAC-DISEASE
ADOLESCENTS
ADJUSTMENT
ILLNESS
ADULTS
PUPILS
VIEWS

Access to Document

10.1111/j.1369-7625.2006.00412.x

Cite this

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title = "Exploring health-related experiences of children and young people with congenital heart disease",

abstract = "Objective To determine the health-related experiences of children with congenital heart disease. Design Qualitative, semi-structured interviews. Participants A purposive sample (N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England. Results The main themes identified included: physical limitations of their condition, restrictions, attitudes of others, choices about information, coping with life and privacy. Conclusions This study suggests that while many of this sample of children said that they coped well with their condition some children did experience significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers and health-care professionals to allow a better understanding of what they are able to achieve. ",

keywords = "children, congenital heart disease, qualitative, QUALITY-OF-LIFE, MAINSTREAM SCHOOL, CARDIAC-DISEASE, ADOLESCENTS, ADJUSTMENT, ILLNESS, ADULTS, PUPILS, VIEWS",

author = "Yvonne Birks and Patricia Sloper and Robert Lewin and Jonathan Parsons",

year = "2007",

month = mar,

doi = "10.1111/j.1369-7625.2006.00412.x",

language = "English",

volume = "10",

pages = "16--29",

journal = "Health Expectations",

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T1 - Exploring health-related experiences of children and young people with congenital heart disease

AU - Birks, Yvonne

AU - Sloper, Patricia

AU - Lewin, Robert

AU - Parsons, Jonathan

PY - 2007/3

Y1 - 2007/3

N2 - Objective To determine the health-related experiences of children with congenital heart disease. Design Qualitative, semi-structured interviews. Participants A purposive sample (N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England. Results The main themes identified included: physical limitations of their condition, restrictions, attitudes of others, choices about information, coping with life and privacy. Conclusions This study suggests that while many of this sample of children said that they coped well with their condition some children did experience significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers and health-care professionals to allow a better understanding of what they are able to achieve.

AB - Objective To determine the health-related experiences of children with congenital heart disease. Design Qualitative, semi-structured interviews. Participants A purposive sample (N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England. Results The main themes identified included: physical limitations of their condition, restrictions, attitudes of others, choices about information, coping with life and privacy. Conclusions This study suggests that while many of this sample of children said that they coped well with their condition some children did experience significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers and health-care professionals to allow a better understanding of what they are able to achieve.

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KW - qualitative

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KW - MAINSTREAM SCHOOL

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KW - ADOLESCENTS

KW - ADJUSTMENT

KW - ILLNESS

KW - ADULTS

KW - PUPILS

KW - VIEWS

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