Barr Ronald D, Silva Agustina, Wong Maria, Frid William, Posgate Susan, Browne Gina
McMaster Children's Hospital, Hamilton Health Sciences, Hamilton, Ontario, Canada.
J Pediatr Hematol Oncol. 2010 Jul;32(5):358-65. doi: 10.1097/MPH.0b013e3181dccc1f.
Camping programs for children with chronic diseases are designed for specific needs, but rigorous evaluation of their impact is largely lacking. The biggest camp for children with cancer and their families provided an opportunity to conduct such an investigation.
The study sample consisted of 76 attendee and 86 non-attendee families. Parents and children completed a series of validated questionnaires addressing family functioning (the primary effect measure); health-related quality of life (HRQL) of the patients; the children's behavior and relationships; parental behavior, mood and social support; parental nurturance, rejection and monitoring (from the perspective of the children); and a health and social service utilization inventory.
The most common diagnoses in the attendee and nonattendee groups were acute lymphoblastic leukemia and central nervous system tumors, respectively. A higher proportion of attendees were receiving active treatment (26.7% vs. 5.8%), almost all for relapsed disease. Parent attendees reported significantly better family function and social support, and parenting skills and coping, than nonattendee parents. The parental proxy assessments of the children's overall HRQL revealed significantly better scores for the attendees, although there was a greater burden of pain among attendees and of cognitive morbidity among nonattendees. Costs related to health care and social services were substantially greater in the attendee families.
Children with cancer cannot be randomized not to attend camp. So the results of this study cannot resolve the conundrum--do better-adapted families attend a camp designed to meet the special needs of their children, or does attendance materially improve the health and welfare of families of children with cancer? However, the very proliferation of such camps is indicative of a need being met and greater efforts should be made to promote the camping experience, and to encourage such children and their families to participate.
针对慢性病患儿的露营项目是根据特定需求设计的，但对其影响的严格评估在很大程度上仍很缺乏。为癌症患儿及其家庭举办的最大型露营活动提供了进行此类调查的机会。
研究样本包括76个参与露营的家庭和86个未参与露营的家庭。家长和孩子完成了一系列经过验证的问卷，内容涉及家庭功能（主要效果指标）；患者的健康相关生活质量（HRQL）；孩子的行为和人际关系；家长的行为、情绪和社会支持；家长的养育、拒绝和监督（从孩子的角度）；以及一份健康和社会服务利用清单。
参与露营组和未参与露营组中最常见的诊断分别是急性淋巴细胞白血病和中枢神经系统肿瘤。参与露营的患儿中接受积极治疗的比例更高（26.7%对5.8%），几乎所有都是针对复发性疾病。参与露营的家长报告称，其家庭功能、社会支持以及养育技能和应对能力明显优于未参与露营的家长。家长对孩子总体HRQL的代理评估显示，参与露营的孩子得分明显更高，尽管参与露营的孩子疼痛负担更大，未参与露营的孩子认知发病率更高。参与露营的家庭在医疗保健和社会服务方面的花费大幅增加。
不能将癌症患儿随机分配不让其参加露营。因此，本研究的结果无法解决这个难题——是适应能力更强的家庭参加了旨在满足其孩子特殊需求的露营活动，还是参加露营切实改善了癌症患儿家庭的健康和福祉？然而，此类露营活动的大量涌现表明一种需求得到了满足，应该做出更大努力来推广露营体验，并鼓励此类患儿及其家庭参与。
