{"title":"Understanding Caregiver Burden in Severe Pediatric Asthma - A Qualitative Study.","authors":"Ping Wu, Jiahui Zhang, Yijing Hu","doi":"10.2147/JMDH.S505739","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>This study aimed to clarify the emotional and practical burden on primary caregivers of children with severe asthma and identify the support needs of those caring for individuals with severe asthma.</p><p><strong>Methods: </strong>A phenomenological research approach in qualitative research was used. Semi-structured interviews with caregivers of children with asthma waiting in the outpatient clinic of Shanghai Children's Hospital were conducted from January to August 2024 through purposive sampling. The researcher transcribed audio-recorded interview data verbatim into text and thematically analyzed the data using the Colaizzi 7-step analysis method and then obtained the final results.</p><p><strong>Results: </strong>There were a total of 12 participants. Through these 12 in-depth one-on-one interviews, all necessary study data were obtained. The study identified the following four main burdens for caregivers of children with severe asthma: 1) Multiple barriers to the care-giving process. (Incomplete knowledge of disease management; lack of competence in care as well as poor child compliance making care more difficult; lack of support for asthma in schools). 2) Excessive consumption of time and energy. (Disturbed sleep rhythms and lack of physical energy). 3) Family dysfunction. (Conflicts among family members; disruption of normal life; increased financial burden). 4) Negative emotions. (fear; nervousness, worry).</p><p><strong>Conclusion: </strong>This study focuses on caregivers of children with severe asthma who face multiple stressors. Caregivers are critical to disease management: healthcare professionals and the community should provide support; family members should share tasks; and children's poor self-management skills place a burden on caregivers, and professionals should teach children to better care for themselves. These findings have important implications for healthcare providers to develop targeted support programs and improve overall care for children with severe asthma.</p>","PeriodicalId":16357,"journal":{"name":"Journal of Multidisciplinary Healthcare","volume":"18 ","pages":"865-876"},"PeriodicalIF":2.7000,"publicationDate":"2025-02-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11837741/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Multidisciplinary Healthcare","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.2147/JMDH.S505739","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Objective: This study aimed to clarify the emotional and practical burden on primary caregivers of children with severe asthma and identify the support needs of those caring for individuals with severe asthma.
Methods: A phenomenological research approach in qualitative research was used. Semi-structured interviews with caregivers of children with asthma waiting in the outpatient clinic of Shanghai Children's Hospital were conducted from January to August 2024 through purposive sampling. The researcher transcribed audio-recorded interview data verbatim into text and thematically analyzed the data using the Colaizzi 7-step analysis method and then obtained the final results.
Results: There were a total of 12 participants. Through these 12 in-depth one-on-one interviews, all necessary study data were obtained. The study identified the following four main burdens for caregivers of children with severe asthma: 1) Multiple barriers to the care-giving process. (Incomplete knowledge of disease management; lack of competence in care as well as poor child compliance making care more difficult; lack of support for asthma in schools). 2) Excessive consumption of time and energy. (Disturbed sleep rhythms and lack of physical energy). 3) Family dysfunction. (Conflicts among family members; disruption of normal life; increased financial burden). 4) Negative emotions. (fear; nervousness, worry).
Conclusion: This study focuses on caregivers of children with severe asthma who face multiple stressors. Caregivers are critical to disease management: healthcare professionals and the community should provide support; family members should share tasks; and children's poor self-management skills place a burden on caregivers, and professionals should teach children to better care for themselves. These findings have important implications for healthcare providers to develop targeted support programs and improve overall care for children with severe asthma.
期刊介绍：
The Journal of Multidisciplinary Healthcare (JMDH) aims to represent and publish research in healthcare areas delivered by practitioners of different disciplines. This includes studies and reviews conducted by multidisciplinary teams as well as research which evaluates or reports the results or conduct of such teams or healthcare processes in general. The journal covers a very wide range of areas and we welcome submissions from practitioners at all levels and from all over the world. Good healthcare is not bounded by person, place or time and the journal aims to reflect this. The JMDH is published as an open-access journal to allow this wide range of practical, patient relevant research to be immediately available to practitioners who can access and use it immediately upon publication.
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