Childhood cancer-parenting work for British Bangladeshi families during treatment: An ethnographic study

https://doi.org/10.1016/j.ijnurstu.2012.11.004Get rights and content

Abstract

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.

Introduction

Parental responsibility to protect children from harm is a recurring theme in health and social care literature. During a serious and life threatening illness, such as childhood cancer, this responsibility is expanded to include the acquisition and use of illness-specific knowledge and skills. This additional level of expectation for parents is undertaken primarily in the hospital setting but extends beyond this to include home and school life. The financial burdens of caring work are acknowledged through a complex network of benefits (both statutory and supported by the charity sector) and there is recognition of the emotional and psychological burdens that the diagnosis of cancer evokes (Mitchell et al., 2006). However the day-to-day work, and the responsibility of parents of children with cancer, is seldom detailed and there is limited analysis of how those from minority ethnic groups experience these demands – or how they can best be supported to manage them.

The data presented here are drawn from an ethnographic study of the childhood cancer experiences of British Bangladeshi children and parents. This paper focuses on the implications for parents of childhood cancer treatment and illustrates Mayall (2001) contention that childhood cannot be studied fully without also considering the interdependent concerns of parenthood.

Social scientists and health researchers have highlighted the complexities of health care ‘work’ often undertaken by parents (Baruch, 1981, Strong, 1979, White, 2002). Parents demonstrate an awareness of the need to present themselves as competent in the context of illness (Kirk et al., 2005) and conforming to health care professionals’ expectations of them when parenting in ‘public’ (Callery, 1995). The acknowledgement of parental expertise and the importance associated with the family unit for children who are ill can lead to an uncritical approach to specific care practices. This can lead to assumptions that they are underpinned by the widely accepted philosophy of family centred care (Franck and Callery, 2004) and therefore unproblematic. As a result there are few critical insights into the impact of taken for granted caring roles for parents (Corlett and Twycross, 2006, Earle et al., 2007).

Childhood cancer represents a broad spectrum of conditions with a similarly wide range of prognoses. The incidence of cancer in childhood is rare, with one in 600 children in the UK developing the disease during their first fifteen years (Stiller, 2007). Potentially life threatening improvements in treatment have resulted in a survival rate of 78% for most 0–14 year olds (National Registry of Childhood Tumours/Childhood Cancer Research Group, http://www.crg.ox.ac.uk), leading practitioners to reclassify childhood cancer, as a chronic life threatening illness rather than an acute terminal one. The worldwide picture is similarly optimistic in most high income countries (Sankila et al., 2006).

Despite increased survival rates cancer remains a significant cause of death amongst children and young people (Björk et al., 2005, Woodgate, 2006). Moreover, childhood cancer requires complex treatment modalities (Gibson and Soanes, 2008) including life-threatening regimes managed in the UK by highly specialised centres (NICE, 2005), whilst other aspects of care are devolved to local hospital and community services. These care models require parents and children to develop relationships with a wide range of health care professionals and services over the course of the disease (Clarke et al., 2004).

A diagnosis of childhood cancer starts a child and family on an illness trajectory involving complex treatments with an uncertain outcome (Parry, 2003). Although parental experiences of childhood cancer treatment have been studied extensively, the majority of studies focus on psychological outcomes or specific experiences linked to hospitalisation, such as disclosure of diagnosis, experience of invasive procedures and recruitment to clinical trials (Eiser et al., 2005). The social impact of the disease and treatment is also acknowledged in terms of the effect on family income (Dockerty et al., 2003, Eiser and Upton, 2007), relationships (McGrath, 2001), school experience (Noll et al., 1999) and overall cancer experience (Woodgate and Degner, 2002). Family models of care within paediatric oncology place a strong focus on parental participation in care delivery and recognise that support needs exist for parents managing the impact of a life threatening diagnosis (Mitchell et al., 2006). However there has been little critical analysis of the model of ‘family care’ itself; rather it has become the de facto approach promoted in many UK care settings (Coyne and Cowley, 2007). In addition limited data exists on the day to day lives of families as they manage the practical demands of cancer (Woodgate, 2006) or how they negotiate their parental roles in the face of a potentially life threatening illness (Young et al., 2002). Even less is known about families from minority ethnic groups who face unique demands such as language difficulties, social isolation and stereotyping (Abbe et al., 2006, Gibson, 2008, Pergert et al., 2008).

Young et al. (2002) conducted a qualitative study with 20 mothers of children aged 4–17 years attending a British paediatric oncology centre. The diagnosis of cancer marked a profound biographical shift for the mothers themselves, from the mother of a ‘healthy’ child to that of a ‘sick’ child. The authors convincingly link this redefining of self-identity:

“[Al]though they are not themselves ill, mothers experience many of the consequences of chronic illness, including biographical disruption, compromise in role function and deterioration in quality of life.” (Young et al., 2002:1837)

This study is particularly important as it provides contemporary British data on the experiences of mothers in their own right, rather than as proxy informants for their children (Anderzen-Carlsson et al., 2007). It seeks not to pathologise their reactions as maladaptive, but suggests that these were a reflection of how the women understood and represented ‘parenting in crisis’. Dixon-Woods et al. (2005) highlighted the specific lack of research on the experiences of minority ethnic families of children with cancer. Research conducted in paediatric oncology settings in the United States (Munet-Vilaro, 2004, Thibodeaux and Deatrick, 2007) and Sweden (Pergert et al., 2007) highlight challenges faced by services delivering care designed to reflect the needs of a homogenous cultural population.

The 2001 census enumerated 283,063 Bangladeshis living in the United Kingdom, representing 0.5% of the total population (Office of National Statistics, 2007, www.statistics.gov.uk, accessed on 24/06/07). The largest Bangladeshi population in the United Kingdom is concentrated in East London where the present study was conducted (Garbin-Cronem, 2005). Here, as elsewhere, they comprise a young (25% under the age of 20) population repeatedly characterised by the prevalence and persistence of socio economic problems (Social Exclusion Unit, 2004), poor educational achievement (Gillborn, 2000) and, more recently, by religious practices (Abbas, 2005).

The Bangladeshi construct of personhood is one of interrelatedness with significant others; adults and children are embedded in close relationships with immediate and extended kin (Pollen, 2002). Furthermore these relationships carry specific expectations and obligations in relation to the giving and receiving of support (Gardner, 2002, Ghaill and Haywood, 2005).

Young children and infants in particular are characterised as having innate vulnerability and there is a strong emphasis on the need for physical proximity (Winch et al., 2005, Gantley, 1994).

The absence of research on the day to day experiences of parents from minority ethnic backgrounds managing childhood cancer treatments and literature on parental experiences demonstrating significant burdens suggested a need for a prospective investigation into these experiences. The data and analysis reported in this paper are drawn from a study that investigated the impact of diagnosis and treatment for cancer on a group of British Bangladeshi children and their parents. The focus on parental experiences reflects the unique role of parents in their children's care during serious illness.

Section snippets

Methods

Ethnography in this study was interpreted as a methodology guiding the production and analysis of data through specific theoretical and philosophical underpinnings, a set of methods for data collection and a representation of the social world through a written account. Toren (1999) argues that how people (adults and children) come to be who they are and behave in the way that they do is brought about through their personal and cultural histories being remade in everyday life. The fieldworker's

Results

The themes discussed here describe the nature of parental work during their child's treatment for cancer. Parents undertook and spoke about these activities as a specific set of obligations which required learning negotiating skills and could be challenging as they required using these skills across a range of complex settings, each with their own rules and obligations.

Discussion

The importance of parental work has largely gone unquestioned in paediatric cancer care and little research has examined the role of ethnicity as a key factor that shapes how it is perceived or carried out.

This research was undertaken in the context of complex paediatric oncology service provision that assumes maximum buy-in (and minimum complaints) from parents, owing to the shared goal of ‘making the child better’. Parents played a key monitoring, advocacy and practical role in the treatment

Conclusion

In conclusion, the work undertaken by Bangladeshi parents of children with cancer was conducted largely from a position of uncertainty and social isolation and suggests that further attention is needed to appreciate how best to support all parents of children with cancer. Although uncertainty and isolation are reported by other parents, those of minority ethnic children may face additional challenges. This study suggests that parents were required to engage in labour to achieve cancer treatment

Acknowledgements

The study was funded through a doctoral fellowship awarded to PK by the consortium for health care research. The Florence Nightingale School of Nursing and Midwifery Kings College London generously awarded PK study leave to complete the writing up of the study. The study protocol was approved by the City and East London research ethics committee.

Two anonymous reviewers from IJNS provided comprehensive and constructive feedback that has contributed significantly to improvements in the paper.

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