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Van der Feen N1, Takken T1
1University Medical Center, Utrecht University, Child Development & Exercise Center, Wilhelmina Children’s Hospital, Utrecht, Netherlands
Background: Research has highlighted the benefits of regular physical activity for children with a congenital heart disease. These health benefits are within reach for nearly all of these children. However, various studies have reported low physical activity levels among this group. Research has identified no differences in physical activity based on the severity of the heart disease, which suggests that other factors may be influential. Little is known about how these children perceive physical activity, and their perceptions could differ from those of their healthy peers. The complex needs of this unique population demand research on this topic to inform clinical practice and, in turn, improve participation in physical activity.
Purpose:
1) To explore facilitators and barriers to participation in physical activity as experienced by children with a congenital heart disease and their parents, and
2) to identify these factors in order to propose future research and inform clinical practice to enhance participation in physical activity in this unique population.
Methods: This study employs an exploratory qualitative design that involves an inductive thematic analysis.
Results: Eighteen semi-structured interviews were conducted with children with a congenital heart disease and their parents. Three boys, four girls, three fathers and eight mothers were interviewed. The children were aged between 8 and 18 years, with a variety of complex congenital heart diseases and recruited from a children's hospital in the Netherlands. Four explicit themes were derived: 'normal child', 'child as patient', 'child imposes his own physical activity restrictions' and 'non-specific'. In addition, two interpretative themes were developed: 'normalisation' and 'take child into consideration'.
Conclusion(s): The present study contributes to our knowledge of facilitators and barriers to participation in physical activity as experienced by children with a congenital heart disease and their parents. To implement the research findings in clinical practice, it is important to have recommendations for children, parents, teachers and coaches that are written in accessible language. Apparently, the existence of recommendations in scientific journals or the advice from paediatric cardiologists to be more physically active is not enough to improve participation in physical activity. Early referral by paediatric cardiologists to paediatric physiotherapy is needed. Paediatric physiotherapists are optimally positioned to instruct these children to cope with the uncertain and ambiguous limitations of their bodies. They can teach the children during physical activity what it is like to exert physical effort, and what is possible and allowed. The children will have more knowledge and will build distress tolerance. Poor distress tolerance may increase the likelihood of avoidance, which may include avoidance of physical activity.
Implications: The findings highlight needs for recommendations that are written in accessible language as well as early referral of these children to paediatric physiotherapy.
Keywords: Congenital heart disease, exercise, child
Funding acknowledgements: This research received no specific grant from any funding agency or commercial or not-for-profit sectors.
Purpose:
1) To explore facilitators and barriers to participation in physical activity as experienced by children with a congenital heart disease and their parents, and
2) to identify these factors in order to propose future research and inform clinical practice to enhance participation in physical activity in this unique population.
Methods: This study employs an exploratory qualitative design that involves an inductive thematic analysis.
Results: Eighteen semi-structured interviews were conducted with children with a congenital heart disease and their parents. Three boys, four girls, three fathers and eight mothers were interviewed. The children were aged between 8 and 18 years, with a variety of complex congenital heart diseases and recruited from a children's hospital in the Netherlands. Four explicit themes were derived: 'normal child', 'child as patient', 'child imposes his own physical activity restrictions' and 'non-specific'. In addition, two interpretative themes were developed: 'normalisation' and 'take child into consideration'.
Conclusion(s): The present study contributes to our knowledge of facilitators and barriers to participation in physical activity as experienced by children with a congenital heart disease and their parents. To implement the research findings in clinical practice, it is important to have recommendations for children, parents, teachers and coaches that are written in accessible language. Apparently, the existence of recommendations in scientific journals or the advice from paediatric cardiologists to be more physically active is not enough to improve participation in physical activity. Early referral by paediatric cardiologists to paediatric physiotherapy is needed. Paediatric physiotherapists are optimally positioned to instruct these children to cope with the uncertain and ambiguous limitations of their bodies. They can teach the children during physical activity what it is like to exert physical effort, and what is possible and allowed. The children will have more knowledge and will build distress tolerance. Poor distress tolerance may increase the likelihood of avoidance, which may include avoidance of physical activity.
Implications: The findings highlight needs for recommendations that are written in accessible language as well as early referral of these children to paediatric physiotherapy.
Keywords: Congenital heart disease, exercise, child
Funding acknowledgements: This research received no specific grant from any funding agency or commercial or not-for-profit sectors.
Topic: Paediatrics
Ethics approval required: No
Institution: Utrecht Medical Center, Utrecht, the Netherlands
Ethics committee: Medical Research Ethics Committee Utrecht Medical Center, Utrecht, the Netherlands
Reason not required: The Medical Research Ethics Committee (MREC) of the Utrecht Medical Center has declared in their letter of 08 November 2017 (reference number WAG/mb/17/033764) that the Medical Research Involving Human Subjects Act (WMO) does not apply to this study and that therefore an official approval of this study by the MREC UMC Utrecht is not required under the WMO.
All authors, affiliations and abstracts have been published as submitted.
