Fawcett Robyn, Porritt Kylie, Stern Cindy, Carson-Chahhoud Kristin
Joanna Briggs Institute, Faculty of Health and Medical Sciences, The University of Adelaide, Adelaide, Australia.
Australian Centre for Precision Health, School of Health Sciences, University of South Australia, Adelaide, Australia.
JBI Database System Rev Implement Rep. 2019 May;17(5):793-984. doi: 10.11124/JBISRIR-2017-004019.
The objective of the review was to identify, critically appraise and synthesize the best available qualitative evidence to understand the lived experiences of parents and carers caring for a child aged 0-18 years with asthma in any setting and managing their condition.
Asthma affects around 14% of children and despite the availability of effective therapies, asthma control is suboptimal and hospitalization rates remain high. Mothers predominantly manage their child's asthma and experience stress and exhaustion due to complex treatments and balancing work and family life. This review provides an understanding of the barriers parents and carers face in managing their child's asthma and highlights the needs of families throughout their asthma journey.
The review considered qualitative studies examining the experiences of parents and carers caring for a child with asthma, wheeze or bronchiolitis and managing their condition. Research designs included, but were not limited to, phenomenology, grounded theory, ethnography, and action and feminist research.
A comprehensive search using PubMed, CINAHL, Embase, PsycINFO, Web of Science and ProQuest for published and unpublished studies was undertaken in June 2017 and December 2017. Studies published in English from 1972 to 2017 were included. The recommended Joanna Briggs Institute approach to critical appraisal, study selection, data extraction and data synthesis was used.
Seventy-seven qualitative studies were included in this review, including grounded theory, phenomenology and ethnography methodologies. From these 77 studies, 1655 participants from a variety of cultural backgrounds and socio-economic status groups were represented. The methodological quality of included articles was sound and participants' voices were strong. A total of 1161 findings (966 unequivocal and 195 credible) were extracted and grouped into 41 categories, based on similarity in meaning. From the 41 categories, seven synthesized statements were produced: i) Negotiating the meaning of having a child with asthma, ii) Impact on family life, iii) The process of getting a diagnosis and learning about asthma, iv) Relationships with healthcare professionals and the emergency department experience, v) Medication beliefs, concerns and management strategies, vi) With time, parents and carers become more comfortable managing their child's asthma, vii) The need for support.
This review highlights the difficulties parents and carers face when caring for a child with asthma and managing their child's condition. Attaining a definitive diagnosis of asthma can be challenging, and parents and carers express uncertainty and fear due to continuing symptoms and repeated hospitalizations. Healthcare professionals should ensure that a clear diagnostic strategy and treatment plan are communicated so parents and carers have an understanding of the pathway to receiving an actual diagnosis. Comprehensive asthma education is essential at the onset of asthma symptoms, with accurate, easy to understand and culturally relevant information. Supportive relationships, with healthcare professionals taking a partnership approach, ensuring adequate time, continuity of care, regular follow-up, and addressing the psychosocial and cultural needs and concerns of parents and carers, are recommended. Support groups and training for education staff is imperative to ensure they can support parents and carers, provide asthma friendly environments and respond appropriately in an asthma emergency.
本综述的目的是识别、严格评估并综合现有的最佳定性证据，以了解在任何环境下照顾0至18岁哮喘儿童并管理其病情的父母和照料者的生活经历。
哮喘影响着约14%的儿童，尽管有有效的治疗方法，但哮喘控制仍不理想，住院率居高不下。母亲主要负责管理孩子的哮喘，由于治疗复杂以及要平衡工作和家庭生活，她们会感到压力和疲惫。本综述有助于了解父母和照料者在管理孩子哮喘方面面临的障碍，并突出家庭在整个哮喘病程中的需求。
本综述纳入了定性研究，这些研究考察了照顾患有哮喘、喘息或细支气管炎儿童并管理其病情的父母和照料者的经历。研究设计包括但不限于现象学、扎根理论、民族志以及行动研究和女性主义研究。
2017年6月和12月，使用PubMed、CINAHL、Embase、PsycINFO、Web of Science和ProQuest对已发表和未发表的研究进行了全面检索。纳入了1972年至2017年以英文发表的研究。采用了推荐的乔安娜·布里格斯循证卫生保健中心的严格评估、研究选择、数据提取和数据综合方法。
本综述纳入了77项定性研究，包括扎根理论、现象学和民族志方法。这77项研究涵盖了来自各种文化背景和社会经济地位群体的1655名参与者。纳入文章的方法学质量良好，参与者的观点得到充分体现。共提取了1161项研究结果（966项明确的和195项可信的），并根据意义相似性分为41类。从这41类中得出了7条综合陈述：i）协商孩子患哮喘的意义，ii）对家庭生活的影响，iii）诊断过程及对哮喘的了解，iv）与医护人员的关系及急诊经历，v）药物信念、担忧及管理策略，vi）随着时间推移，父母和照料者在管理孩子哮喘方面变得更加得心应手，vii）对支持的需求。
本综述突出了父母和照料者在照顾哮喘儿童并管理其病情时所面临的困难。获得哮喘的确切诊断可能具有挑战性，由于持续症状和反复住院，父母和照料者会表现出不确定性和恐惧。医护人员应确保传达明确的诊断策略和治疗计划，以便父母和照料者了解获得实际诊断的途径。在哮喘症状出现之初，全面的哮喘教育至关重要，要提供准确、易于理解且与文化相关的信息。建议建立支持性的关系，医护人员采取合作方式，确保有足够的时间、持续的护理、定期随访，并关注父母和照料者的心理社会及文化需求和担忧。支持小组以及对教育人员的培训必不可少，以确保他们能够支持父母和照料者，提供有利于哮喘患者的环境，并在哮喘紧急情况中做出适当反应。
