Louis Dundas Centre for Children's Palliative Care, University College London, United Kingdom.
Int J Nurs Stud. 2013 Jul;50(7):933-44. doi: 10.1016/j.ijnurstu.2012.11.004. Epub 2012 Dec 3.
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.
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.
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.
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.
详细描述一个特定少数族裔群体父母的日常管理经验，这些父母在许多研究中都没有代表性。
对父母在孩子接受癌症治疗期间的经验研究表明，由于强化治疗方案和预后不确定，护理负担相当大。在英国儿科癌症服务中，关于父母如何管理日常生活的研究有限，也没有关于少数族裔群体父母经历的已发表研究。
设计、地点和参与者：这项民族志研究使用了参与者观察法，在家庭、社区和临床环境中，对 8 个正在接受癌症治疗的英裔孟加拉儿童家庭进行了为期 22 个月的跟踪研究。对父母进行了 7 次焦点访谈。在实地工作中同时进行数据分析，确定、定义和完善主题，在比较数据集内和数据集之间时保持上下文。
在本研究中，父母的角色和责任被重新概念化为一种“工作”，父母（和孩子）为实现和管理癌症治疗而承担。确定了五个描述父母工作的主题：管理竞争知识、警惕、倡导、平衡父母工作和治疗负担。分析表明，专业人员比儿童特定知识更重视癌症特定知识。他们的许多“工作”都与警惕孩子的病情和护理以及治疗有关，包括充当倡导者。父母在照顾孩子的同时，还必须平衡其他各种责任。在整个治疗过程中，父母承担的各种责任很少得到专业人员的认可，结果，父母认为自己的投入是一种缺乏认可的负担，这增加了他们作为少数族裔已经存在的脆弱性。
在儿童癌症治疗期间，父母们认为理所当然且常常看不见的育儿方面构成了这群父母相当大的工作量。治疗的无情性质也是一种负担，因为这是在对孩子康复持续不确定的情况下发生的。临床工作人员应考虑服务组织和治疗对特定群体父母的影响，包括少数族裔群体，以认识和减轻负担过重的工作。
