Identity and role in parenting a child with cancer
Identity and role in parenting a child with cancer
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养育癌症儿童的身份和角色
DOI：
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发表时间：
2002
期刊：
影响因子：
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通讯作者：
D. Heney
中科院分区：
文献类型：
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作者：
B. Young;M. Dixon;D. Heney
在这篇论文中，我们认为癌症儿童的父母的需求和角色在传统的研究癌症等儿童慢性疾病的心理社会方面的方法中没有得到充分的概念化。传统的方法主要是在精神病理学的论述中进行的，它们倾向于用“适应不良”和“应对”来描述父母对孩子疾病的经历，但在阐明父母如何与孩子的疾病共存的过程方面做得很少。在其他领域，研究文献仅仅将父母视为孩子观点的代理来源，而忽视了他们作为照顾者和个人自身权利的复杂性。我们试图重新描述养育癌症儿童的特征，让人们注意到父母的角色、身份和社会义务是如何将他们与医学界联系起来的，并强调父母所做的情感工作，包括保护他们自己和孩子的身份。根据各种各样的经验和理论工作，包括发展中的儿童研究领域和关于非正式照顾者的文献，我们提出了重新思考我们对养育患有癌症的孩子的经验的理解的方法。在此过程中，我们考虑了父母的叙述如何为评估儿童癌症对父母生活质量的影响的措施的发展提供信息，以及服务的社会和组织方面在改善养育癌症儿童所涉及的一些困难方面可以发挥的作用。
In this paper we suggest that the needs and roles of parents of children with cancer have been inadequately conceptualized by traditional approaches to investigating the psychosocial aspects of chronic childhood illnesses such as cancer. Conducted mainly within discourses of psychopathology, traditional approaches have tended to characterize parents' experience of their child's illness in terms of 'maladjustment' and 'coping', but have done little to illuminate the processes involved in how parents live with their child's illness. In other areas, the research literature treats parents solely as proxy sources of their children's views, and the complexity of their roles as caregivers and individuals in their own right has been ignored. We attempt to re-characterize parenting a child with cancer, drawing attention to how the roles, identities and social obligations of parents position them in relation to the medical world, and highlight the emotional work carried out by parents, including protection of their own and their child's identity. Drawing on various bodies of empirical and theoretical work, including the developing field of childhood studies and the literature on informal carers, we suggest ways of rethinking our understanding of the experience of parenting a child with cancer. In doing so, we consider how the narratives of parents can inform the development of measures to assess the impact of the childhood cancer on the quality of parents' lives, and the role that social and organizational aspects of services can play in ameliorating some of the difficulties involved in parenting a child with cancer.