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Published on: November 3, 2023
Quality Of Life in Children With Home Mechanical Ventilation - A Scoping Review
Janet Mattson1,2, Johan Lunnelie1, Tim Löfholm1
1Department of Health Sciences, Swedish Red Cross University, Sweden.
Insights
Children and adolescents on home mechanical ventilation (HMV) report lower quality of life (QoL) than their peers. Parents generally perceive their child's QoL as lower than the child does, highlighting family impact.
Area of Science:
- Pediatric Pulmonology
- Quality of Life Research
- Chronic Illness Management
Background:
- Home mechanical ventilation (HMV) supports children with chronic respiratory insufficiency.
- Further research is needed on the quality of life (QoL) and lived experiences of these young patients.
- Understanding QoL is crucial for providing effective, person-centered care.
Purpose of the Study:
- To conduct a scoping review exploring research on the QoL and lived experiences of children and adolescents using HMV.
- To synthesize existing literature on the subject from 2000-2020.
Main Methods:
- Systematic searches were conducted in CINAHL, Medline, and PubMed for studies published between 2000 and 2020.
- Included studies underwent quality assessment and thematic analysis.
- Ten articles met the inclusion criteria for the review.
Main Results:
- Four key themes emerged: children's self-reported QoL, parental perceptions and proxy reports, discrepancies between child and parent perceptions, and daily life challenges.
- Children and adolescents on HMV reported lower QoL compared to healthy peers and those with other chronic conditions.
- Parents generally rated their child's QoL lower than the children themselves.
Conclusions:
- This is the first literature review on HMV in the pediatric population, emphasizing its impact on the entire family.
- Regular assessment and evaluation of QoL are essential for optimizing care for children and adolescents on HMV.
- Additional research is necessary to enhance the QoL for this population.
Introduction:
Home mechanical ventilation is an established method to support children suffering from chronic respiratory insufficiency, still more research is needed regarding mechanically ventilated children's and adolescents' quality of life (QoL). Therefore, the aim of this scoping review was to explore research regarding QoL and lived experience of children and adolescents with home mechanical ventilation.
Methods:
A scoping review with systematic searches for research studies published between year 2000-2020 was performed in Cinahl, Medline, and PubMed. Studies that met the inclusion criteria were quality assessed and a thematic analysis was performed.
Results:
In total, ten articles were quality assessed and included in the results. Four themes emerged: Children's self-reported QoL, Parents' perception and parent-proxy report, Differences between the child's and parent's perception, and challenges in daily life. Children with home mechanical ventilation reported a lower QoL than healthy children and children with other chronic diseases. Generally, parents rate their child's QoL lower than the children themselves.
Conclusion:
This is the first literature review focusing on HMV in the paediatric population. It is clear that HMV does not only affect the treated child or adolescent but also the whole family. It is important to regularly measure and evaluate QoL in children and adolescents with HMV to provide person-centered care. More research is needed to improve these children's and adolescents' QoL.
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