The experiences of accessing health care for families of children with bronchiectasis in the Counties Manukau District Health Board, Auckland, New Zealand: A qualitative study
Jepsen, Nicola Elizabeth
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Background: Bronchiectasis is a chronic respiratory condition and a worsening public health problem in New Zealand, particularly in the Counties Manukau District Health Board area in Auckland. The disease contributes to significant health care costs, as well as presenting a social and economic burden to individuals and the community. Population patterns display significant social disparities, with highest rates amongst Māori, Pacific Island and disadvantaged people. While bronchiectasis can develop at any age, children are particularly susceptible, and it is imperative that bronchiectasis is identified and managed early, or even prevented from developing. Poor access to health care is one factor that may influence the development of bronchiectasis. There is no existing literature exploring access to health care for families of children with bronchiectasis. It is important that the experiences of these families are understood, in order to critique and improve current health care systems. The aim of this study was to explore the experiences of accessing health care for families of children with bronchiectasis in the Counties Manukau District Health Board area. Methods: Interpretive descriptive methodology was used to guide this study. Semi-structured interviews were carried out with ten participants, who were parents of children with bronchiectasis. Interviews were audio recorded and transcribed verbatim. Thematic analysis was employed for data analysis. Results: Five key themes were developed: 1) Searching for answers, describing parents’ search for a diagnosis; 2) (Dis)empowerment, describing parents’ initial vulnerability, then acquisition of knowledge, which led to greater empowerment in the health care provider-parent relationship; 3) Health care and relationships, describing the impact of the relationship between health care provider and parent on the parent’s health care experiences; 4) A juggling act, describing the challenges of juggling health care with school, work and family life; and 5) Making it work, describing how, despite experiencing barriers to accessing health care, parents could find a way to ‘make it work’. Conclusions: The study found that the relationship between health care provider and parent was crucial. Health care providers must appreciate the influence of the relationships they build with patients and parents and emphasise patient-centred care. Communication and trust were important factors for fostering a helpful health care relationship and power dynamics inherent in health care provider-parent relationships must be acknowledged. Parents’ empowerment within these relationships was facilitated by their acquisition of knowledge. While parents sometimes experienced practical barriers to accessing health care (like financial or transportation difficulties), parents’ perceptions of the quality and potential benefit of health care services motivated them to find ways to overcome these barriers. The findings of this study may help to improve access to health care for parents of children with bronchiectasis if identified issues and implications for practice are addressed by health care providers and health system stakeholders.