McMaster University, Hamilton, Ontario, Canada.
McMaster Children's Hospital, Hamilton Health Sciences, Hamilton, Ontario, Canada.
Psychooncology. 2024 Jun;33(6):e6365. doi: 10.1002/pon.6365.
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.
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.
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.
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.
亲人患癌可能会对儿童的健康和成长产生负面影响。儿童生活专家（CLS）专门帮助儿童理解和应对困难的医疗情况，但通常无法在成人护理机构中提供支持，以满足有未成年子女的患者家庭的需求。我们对一家三级肿瘤中心的试点 CLS 项目进行了一项混合方法研究。
我们收集了转介家庭的行政和临床数据；遭遇数据；以及在参与项目前后 2 个月的患者报告问卷数据。
在最初的 10 个月中，有 98 个家庭被转介，其中 91 个家庭通过总共 257 次临床接触参与了项目。家庭中的癌症患者通常是一名 45 岁左右的女性，处于母亲的角色。乳腺癌是最常见的诊断（24%），78%的患者处于第四期疾病。大多数家庭都有 1 个以上的孩子，孩子大多是学龄儿童（5-14 岁）。电话和医院/诊所访问占 CLS 时间的最大部分。干预措施从诊断教育到丧亲支持不等。大多数癌症患者表示该项目对他们和他们的家庭很有帮助。患者报告的结果有中等程度的改善趋势。
我们的研究能够了解初始 CLS 项目的运营情况，以指导项目的发展和未来的研究。这样的项目有望成为成人肿瘤学以家庭为中心的护理的重要组成部分。
