Hafetz J, Miller V A
Center for Injury Research and Prevention, The Children's Hospital of Philadelphia, PA, USA.
Child Care Health Dev. 2010 Sep;36(5):655-62. doi: 10.1111/j.1365-2214.2010.01102.x. Epub 2010 Jun 1.
The management of a childhood chronic illness can be challenging because it can involve frequent and complex treatment tasks that must be carried out on a daily basis. Parental monitoring of the treatment regimen and child disclosure of health-related information may impact effective illness management but are not well understood.
The present study utilized qualitative methods to examine parental monitoring-related behaviours, youth disclosure of health-related information, and both perceptions about, and reactions to, these behaviours in a sample of youth diagnosed with a chronic illness (e.g. asthma, diabetes and cystic fibrosis) and parents of youth with one of these illnesses.
Parents solicited information from youth verbally, observed symptoms, reminded youth about treatments and tracked indicators of treatment adherence (e.g. dose counters; glucose meters). Youth reactions varied from acceptance to irritation. Youth behaviours included withholding information and freely disclosing spontaneously and in response to requests.
Findings derived from this qualitative methodology demonstrate convergence with findings from quantitative studies on this topic, add to the literature related to parental monitoring of chronic illness management and suggest several avenues for future research.
儿童慢性病的管理颇具挑战性，因为这可能涉及到必须每日执行的频繁且复杂的治疗任务。父母对治疗方案的监督以及孩子对健康相关信息的披露可能会影响疾病的有效管理，但目前对此了解尚浅。
本研究采用定性方法，在确诊患有慢性病（如哮喘、糖尿病和囊性纤维化）的青少年样本以及患有上述其中一种疾病的青少年的父母中，考察与父母监督相关的行为、青少年对健康相关信息的披露，以及对这些行为的看法和反应。
父母通过口头方式向青少年询问信息、观察症状、提醒青少年进行治疗并跟踪治疗依从性指标（如剂量计数器；血糖仪）。青少年的反应从接受至恼怒不等。青少年的行为包括隐瞒信息以及主动且应要求自由披露信息。
从这种定性方法得出的研究结果与关于该主题的定量研究结果一致，丰富了与父母对慢性病管理监督相关的文献，并为未来研究提出了几个方向。
