Parents of British Bangladeshi children undergoing cancer treatment report managing competing knowledge, vigilance, advocacy, balancing work and treatment burden impacts on their lives
- Correspondence to: Dr Tony Cassidy, School of Psychology, University of Ulster, Coleraine BT52 1SA, Northern Ireland;
Implications for practice and research
Coordinated effort and improved communication between health professionals and family caregivers may reduce the burden and vulnerability of caregivers when caring for a child with cancer.
Caregivers’ responsibilities were categorised as ‘managing competing knowledge’, ‘vigilance’, ‘advocacy’, ‘balancing parental work’ and ‘burden of treatments’, and provide a useful framework for future research.
The advances in the clinical treatment of cancer have led to greater survival rates, and with fewer deaths there is an increase in the number of patients requiring treatment in the home. This has led to a significant increase in the number and importance of family caregivers.1 ,2 Although health professionals work with children and young people at scheduled and often time-limited sessions, family caregivers are responsible for managing their child's condition on a daily basis. Despite a growing literature base, the intricate detail of the work involved by the family caregivers is not fully understood and may be underestimated. Family caregivers not only provide care directly to the child, but also manage the relationship between the healthcare system and the family, while maintaining other family and work commitments. Kelly and colleagues explored the burden of caregiving in British Bangladeshi families.
This ethnographic study used participant observation methods to observe eight British Bangladeshi families over 22 weeks in home, community and clinical settings. This underused methodology provides useful insights that are particularly relevant to the ethnic minority families, but could also potentially be used in other caregiving settings. Sampling was purposive and the participants were accessed through paediatric oncology services. The researcher undertook training in the Bengali dialect and was also supported by a Bilingual advocate. In addition to observation, data collection was broadened through undertaking interviews with the families and maintaining a reflexive daily field journal. The analysis involved identifying themes across datasets as an ongoing and iterative process in order to build up a picture of the children's daily lives and the work of the family caregivers.
Five main themes relating to the caregiver's work were identified: ‘managing competing knowledge’, ‘vigilance’, ‘advocacy’, ‘balancing parental work’ and ‘burden of treatments’. While the themes are fairly self-explanatory, they provide an insight into important differences between the professionals and the parents. The health professionals valued the cancer-specific knowledge more than the child-specific knowledge. The parents perceived that the professionals do not always recognise or value their input or the burden involved in balancing their caregiving with a range of other parenting responsibilities. Many parents perceived that their vulnerability as a member of an ethnic minority group was exacerbated by the lack of recognition from health professionals.
The innovative application of participant observation methods brings a very useful perspective and important insights to a challenging area of research. It is important to understand the work of family caregivers since it represents a significant and growing contribution to healthcare delivery. The approach to data collection and analysis is transparent and therefore adds to the credibility of study findings, which builds on and confirms the previous findings.
Professional-client communication and information sharing has been demonstrated as important for patients with cancer,3 ,4 but has not really been considered in relation to family caregivers. The evidence here is that a communication gap may exist between the health professionals and the family caregivers which adds to the burden of the caregivers and increases their sense of vulnerability. This seems particularly the case for those already vulnerable, although all parents of children with cancer are likely to be vulnerable due to the trauma of receiving such a diagnosis and dealing with the uncertainty involved.
The five themes identified provide a very useful set of categories to explore the family caregiving roles and importantly broaden the focus of future research to include the range of responsibilities of parents beyond those of direct caregiving. The lack of recognition and value given to the role of family caregivers by health professionals echoes the call by the previous researchers for more coordination of caregiving between professionals and family caregivers,5 even to the extent of involving families in designing the treatment regimen.6