Ware Jane, Raval Hitesh
Kent and Medway NHS and Social Care Partnership Trust, UK.
Clin Child Psychol Psychiatry. 2007 Oct;12(4):549-65. doi: 10.1177/1359104507080981.
Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused specifically upon this group of children and their families. This study utilized qualitative methods to investigate the experience of fathers, a group who are often under-represented in child illness research. The research aim was to gain an understanding of fathers' experiences of having a child with a life-limiting illness, its impact upon them, and their perceptions of service provision. The data from eight interviews was analysed using Interpretative Phenomenological Analysis. Four main themes emerged highlighting the fathers' feeling that their world had been turned upside down, how they lived with the knowledge their child would die, how men perceive themselves as different from women, and the fathers' wish to contribute to changing and improving how other fathers might cope with a child with a life-limiting illness. The results are discussed particularly in relation to gender issues. Various implications for clinical practice and service provision are considered. Suggestions are also made for future research.
儿童生命有限性疾病是指那些没有合理治愈希望且儿童会因此死亡的疾病。直到最近，这些疾病才被视为一个独立的类别，因此专门针对这一群体儿童及其家庭的研究相对较少。本研究采用定性方法，调查父亲们的经历，而在儿童疾病研究中，这一群体的代表性往往不足。研究目的是了解父亲们在孩子患有生命有限性疾病时的经历、这种疾病对他们的影响以及他们对服务提供的看法。使用解释现象学分析方法对八次访谈的数据进行了分析。出现了四个主要主题，突出了父亲们觉得自己的世界天翻地覆的感受、他们如何面对孩子会死亡这一事实、男性如何看待自己与女性的不同，以及父亲们希望为改变和改善其他父亲应对孩子患有生命有限性疾病的方式做出贡献。尤其结合性别问题对研究结果进行了讨论。考虑了对临床实践和服务提供的各种影响。还对未来研究提出了建议。
