Objective: 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.
Introduction: 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.
Inclusion criteria: 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.
Methods: A comprehensive search using PubMed, CINAHL, Embase, PsycINFO, Web of Science and ProQuest for published and unpublished studies was undertaken in June 2017 and December 2017.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.
Results: 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.
Conclusions: 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.