Abstract：
BACKGROUND: Cancer in a loved one can have negative effects on child health and development. Child Life Specialists (CLSs) specialize in assisting children understand and cope with difficult medical scenarios but are generally not available in adult care facilities to support the needs of patient-families with minor children. We conducted a mixed-methods study of the implementation of a pilot CLS program at a tertiary oncology centre.
METHODS: We collected administrative and clinical data on referred families; encounter data; and patient-reported questionnaire data before and 2 months after engagement with the program.
RESULTS: Over the initial 10 months, 98 families were referred, 91 of whom engaged through a total of 257 clinical encounters. The cancer patient in the family was most commonly a woman with a mean age of 45 years and in the role of mother. Breast cancer was the most common diagnosis (24%) and 78% of patients had stage IV disease. Most families had >1 child at home, and children were most commonly school-aged (5-14y). Phone and Hospital/Clinic visits accounted for the largest portion of CLS time. Interventions ranged from diagnosis education through to bereavement support. Most cancer patients indicated that the program was helpful to them and their families. There were trends of moderate improvements on patient reported outcomes.
CONCLUSIONS: Our study was able to provide an understanding of the initial CLS program operations to guide program development and future study. Such a program holds promise as an important aspect of adult oncology family-centered care.
METHODS: We collected administrative and clinical data on referred families; encounter data; and patient-reported questionnaire data before and 2 months after engagement with the program.
RESULTS: Over the initial 10 months, 98 families were referred, 91 of whom engaged through a total of 257 clinical encounters. The cancer patient in the family was most commonly a woman with a mean age of 45 years and in the role of mother. Breast cancer was the most common diagnosis (24%) and 78% of patients had stage IV disease. Most families had >1 child at home, and children were most commonly school-aged (5-14y). Phone and Hospital/Clinic visits accounted for the largest portion of CLS time. Interventions ranged from diagnosis education through to bereavement support. Most cancer patients indicated that the program was helpful to them and their families. There were trends of moderate improvements on patient reported outcomes.
CONCLUSIONS: Our study was able to provide an understanding of the initial CLS program operations to guide program development and future study. Such a program holds promise as an important aspect of adult oncology family-centered care.
摘要：
背景：亲人的癌症会对儿童的健康和发育产生负面影响。儿童生活专家（CLSs）专门帮助儿童理解和应对困难的医疗情况，但通常在成人护理设施中无法提供，以支持有未成年子女的患者家庭的需求。我们对三级肿瘤学中心的CLS试点计划的实施进行了混合方法研究。
方法：我们收集了转诊家庭的管理和临床数据；接诊数据；以及参与该计划之前和之后2个月的患者报告的问卷调查数据。
结果：在最初的10个月中，98个家庭被提及，其中91人参与了总共257次临床接触。家庭中的癌症患者最常见的是平均年龄为45岁并担任母亲的女性。乳腺癌是最常见的诊断（24％），78％的患者患有IV期疾病。大多数家庭家里有超过1个孩子，儿童最常见的是学龄儿童（5-14岁）。电话和医院/诊所就诊占CLS时间的最大部分。干预措施从诊断教育到丧亲支持。大多数癌症患者表示该计划对他们及其家人有帮助。患者报告的结果有中度改善的趋势。
结论：我们的研究能够提供对初始CLS计划操作的理解，以指导计划开发和未来研究。这样的计划有望成为成人肿瘤学以家庭为中心的护理的重要方面。
方法：我们收集了转诊家庭的管理和临床数据；接诊数据；以及参与该计划之前和之后2个月的患者报告的问卷调查数据。
结果：在最初的10个月中，98个家庭被提及，其中91人参与了总共257次临床接触。家庭中的癌症患者最常见的是平均年龄为45岁并担任母亲的女性。乳腺癌是最常见的诊断（24％），78％的患者患有IV期疾病。大多数家庭家里有超过1个孩子，儿童最常见的是学龄儿童（5-14岁）。电话和医院/诊所就诊占CLS时间的最大部分。干预措施从诊断教育到丧亲支持。大多数癌症患者表示该计划对他们及其家人有帮助。患者报告的结果有中度改善的趋势。
结论：我们的研究能够提供对初始CLS计划操作的理解，以指导计划开发和未来研究。这样的计划有望成为成人肿瘤学以家庭为中心的护理的重要方面。
