從病痛敘事談氣喘兒童與其家庭照顧者之共病經驗

Abstract

研究背景與目的：氣喘是兒少最常見的慢性病，對兒少及家庭的健康和生活皆造成影響，且氣喘兒少往往與過敏性疾病共病，使他們面臨不只一種健康問題，這些問題可能相互影響，使生活狀況更加複雜，對家庭也形成更大的負擔和困擾。目前臺灣的氣喘研究討論了醫療利用、生活品質、疾病管理等方面，缺乏以氣喘兒少為主體的共病經驗觀點研究，因此本研究透過Arthur Kleinman提出之病痛(illness)概念，探討氣喘和過敏性疾病對於兒少及家庭生活之影響及其病痛難題。 研究方法：本研究以質性訪談進行，於2023年12月至2024年3月，訪談中南部受空污影響地區的12位氣喘兒少、12位家長，瞭解氣喘兒童的生活經驗、家庭的照護經驗、病痛難題及其對政策的期望。 研究結果：本研究發現氣喘除了造成兒少短期的不適，還對身體產生長遠的變化，且兒少多數與過敏性疾病共病，過敏性疾病除了引起不適，也可能是氣喘發作的前兆。氣喘、過敏性疾病及其他慢性疾病也存在共病現象，疾病和藥物的交互作用，使得不同慢性疾病間的控制更為複雜和困難。在照護方面，家庭投入大量心力照顧氣喘兒少，改變原有生活方式，包含環境改善與清潔、飲食和活動限制等，這些措施因家庭的價值觀和文化背景而異，而這些措施也增加了家長的照護壓力，包含工作與照護間的兩難、照護方式的分歧。而多數兒少表示現今已習慣與氣喘和平共處，部分兒少認為氣喘會影響他們的未來，也有兒少認為過敏性疾病對他們的影響更大。在政策方面，家長認為氣喘共照網並未落實，政府應協助醫院落實該方案，氣喘家庭也對空氣污染政策提出建議，希望政府持續推動空氣污染防治政策，並在校園治理空污。 結論與政策建議：氣喘對兒少及其家庭造成了深遠的影響，這些影響已嵌入至他們日常生活的各個方面，這些是難以量化卻為家庭帶來各種難題的病痛。為了幫助家庭應對這些難題，本研究建議(1)政府應協助醫療機構積極邀請家庭參與氣喘共照網，並提供相關諮詢管道供家庭尋求幫助。(2)持續推動空氣汙染防制及監管。(3) 提升民眾對氣喘以及空氣汙染的認知。(4)建構友善氣喘兒少的校園環境。

Background and Aims: Asthma is the most common chronic diseases among children, affecting their health and daily life, as well as the well-being of their families. Asthmatic children often have comorbid allergic diseases, presenting multiple health challenges that can interact and complicate their living conditions. Current asthma research in Taiwan discusses aspects such as medical utilization, quality of life, and disease management, but lacks a focus on the comorbidity experiences of children with asthma. Therefore, this study used Arthur Kleinman's concept of illness to explore the impact of asthma and allergic diseases on the lives of children and their families. Methods: This study used interviews to collect data. The interviews were conducted from December 2023 to March 2024, involving 12 children with asthma and 12 family caregivers from central and southern Taiwan affected by air pollution. The aim was to understand the daily experiences of children with asthma, the caregiving experiences of family caregivers, the challenges they faced, and their expectations for policy. Results: This study found that asthma not only causes short-term discomfort in children but also leads to long-term changes in their bodies. Most asthmatic children also suffer from allergic diseases, which not only cause discomfort but can also be precursors to asthma attacks. There is also a comorbidity phenomenon between asthma, allergic diseases, and other chronic diseases. The interaction between diseases and medications makes managing these conditions more complex and difficult. In terms of caregiving, families invest much effort in caring for children and change their original lifestyles, including improving and cleaning the environment, and restricting diet and activities. These measures vary according to the family's values and cultural background. Implementing these measures also increases the caregivers' burden, creating dilemmas between work and caregiving and causing disagreements over caregiving methods. Therefore, the cooperation of the family members is important during the caregiving process. Most children are used to living with asthma, but some think it will affect their future. Additionally, some children think that allergic diseases have a greater impact on their lives. Regarding policy, parents feel that the asthma care network has not been fully implemented, and the government should assist hospitals implement it. Asthma families also have suggestions for air pollution policies, hoping the government will continue to promote air pollution control measures and improve air quality in schools. Conclusion and Policy Suggestions: Asthma has a profound impact on children and their families, affecting all aspects of their daily lives. These effects are difficult to quantify and bring numerous challenges to the family. To help families cope with these challenges, this study suggests (1) assisting medical institutions in actively inviting families to participate in the asthma care network and provide consultation channels for families to seek help; (2) strengthening air pollution control policies; (3) enhancing public awareness of asthma and air pollution; (4) creating an asthma-friendly school environment.