Objective: To detail the day to day management experiences of a specific group of parents from a minority ethnic group who lack representation in many studies.
Background: Studies of parental experiences during their child's treatment for cancer have revealed a considerable burden of care related to intensive treatment regimens and the uncertainty of prognosis. In the context of UK paediatric cancer services there is limited research on how parents manage their daily lives and no published studies detailing the experiences of parents from minority ethnic groups.
Design, setting and participants: This ethnographic study used participant observation in the home, community and clinical settings, to follow eight families of British Bangladeshi children undergoing cancer treatment over an extended time period (22 months). Focused interviews with parents (7) were conducted. Data were analysed concurrently during fieldwork with themes identified, defined and refined, maintaining context whilst comparing within and across data sets.
Results: Parental roles and responsibilities are reconceptualised in this study as a form of 'work' that parents (and children) undertook to achieve and manage cancer treatment. Five themes describing parental work were identified: Managing Competing Knowledge, Vigilance, Advocacy, Balancing Parental Work and the Burdens of Treatment. Analysis revealed that cancer-specific knowledge was more highly valued by professionals than child-specific knowledge. A good deal of their 'work' related to being vigilant about their child's condition and care and treatment, including acting as advocates. Whilst undertaking caring work for their child, parents had to balance this with a range of other responsibilities. The range of responsibilities placed on parents throughout treatment were acknowledged only rarely by professionals and as a result, parents experienced their input as a burden that lacked recognition and increased a vulnerability, already present through minority ethnic status.
Conclusions: The taken for granted and often unseen aspects of parenting during childhood cancer treatment constituted a considerable workload for this group of parents. The relentless nature of treatment was also a burden, since this took place in the context of on-going uncertainty about their child's recovery. Clinical staff should consider the impact of service organisation and treatments on specific groups of parents including minority ethnic groups in order to recognise and mitigate against burdensome work.
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