A critical ethnography: the parental impact of diagnosed rare diseases of childhood

Abstract

Research Doctorate - Doctor of Philosophy (PhD)Aim: To identify the factors that impact upon and influence parents’ ability to cope and adapt to being the carers of children with diagnosed rare diseases and to examine how these factors affect parental wellbeing. Research Design: Critical ethnography was employed for its utility in exploring research areas where little is known and where the situations of participants are likely to be less than they should or could be. Bronfenbrenner’s Bioecological Model provided the conceptual framework for the study. Participants: Twelve parents and one young person consented to participate in interviews. Three mothers and their daughters participated in critical ethnographic observation of their interactions with healthcare clinicians in a variety of settings. Findings: Parents of children with a diagnosed rare disease are extremely vulnerable to multifactorial stressors that impact upon their biopsychosocial wellbeing and thereby threaten family function. These factors were found to be grouped into three main themes: “Extreme vulnerability”; “Coping and adaption against the odds”; and “The future: how could it be otherwise?” Health and other government organisations have contributed to this vulnerability because they have not considered rare diseases as a collective health entity directly affecting over a million Australians and therefore worthy of well‐considered, systematic approaches to improve healthcare delivery and family support. Conclusion: Parents have succeeded in providing their child/children with care and nurturing that has enabled them to survive and develop well beyond their original prognosis. This achievement came at a high cost to the parents’ wellbeing, as they found themselves needing to provide and coordinate complex medical care in a health system designed to cater to the majority of people who need it acutely and infrequently. High levels of negative health outcomes were reported by most parents. A biopsychosocial model of highly individualised healthcare, along with timely and responsive government support, is required to provide parents with the assistance they need to care for their family without additional psychosocial burdens that threaten their personal wellbeing and therefore, that of their family