Understanding Caregiver Burden in Severe Pediatric Asthma - A Qualitative Study.

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.