Faculty of Pharmacy, Université Laval, Québec, QC G1V 0A6, Canada.
Department of Pharmacy, CHU de Québec-Université Laval, Québec, QC G1V 4G2, Canada.
Curr Oncol. 2021 Nov 1;28(6):4377-4391. doi: 10.3390/curroncol28060372.
Acute lymphoblastic leukemia (ALL) is the most common type of cancer in children. Treatment includes home-based oral chemotherapies (OCs) (e.g., 6-mercaptopurine and dexamethasone) taken for 2 to 3 years. The management of OC can be challenging for children and their parents. However, the multifaceted experience of families with children taking OC for ALL is largely undescribed. We report the experience with these OCs from the parents' perspective. We conducted a qualitative descriptive study. Semi-structured interviews were conducted with the parents of children with ALL aged < 15 years, followed in a specialized university-affiliated center. The interviews were fully transcribed and thematically analyzed. Thirteen of the seventeen eligible parents (76.5%) participated in the study. The parents' motivation to follow the recommendations provided by the multidisciplinary care team regarding OC was very high. The quantity and the quality of the information received were judged adequate, and the parents reported feeling knowledgeable enough to take charge of the OC at home. Adapting to the consequences of OC on family daily life was collectively identified as the biggest challenge. This includes developing and maintaining a strict daily routine, adapting to the child's neurobehavioral changes during dexamethasone days and adapting family social life. Our findings have several implications for enhancing the support offered to families with home-based OC for ALL. Supportive interventions should consider the family as a whole and their needs should be regularly monitored. Specific attention should be paid to the development and maintenance of a routine, to the parental burden, and to the emotional impact, especially regarding dexamethasone.
急性淋巴细胞白血病（ALL）是儿童中最常见的癌症类型。治疗包括在家中进行的口服化疗（OCs）（例如，巯基嘌呤和地塞米松），持续 2 到 3 年。OC 的管理对儿童及其父母来说可能具有挑战性。然而，儿童接受 ALL 口服化疗的家庭的多方面经历在很大程度上尚未被描述。我们从父母的角度报告这些 OCs 的经验。我们进行了一项定性描述性研究。对在专门的大学附属中心接受治疗的年龄<15 岁的 ALL 患儿的父母进行了半结构化访谈。访谈内容被完整转录，并进行了主题分析。17 名符合条件的父母中有 13 名（76.5%）参与了研究。父母非常愿意遵循多学科护理团队提供的关于 OC 的建议。他们认为收到的信息量和质量都足够充分，并报告说他们觉得自己有足够的知识在家中负责 OC。适应 OC 对家庭日常生活的影响被认为是最大的挑战。这包括制定并保持严格的日常生活规律，适应地塞米松期间孩子的神经行为变化，以及适应家庭的社交生活。我们的研究结果对加强为在家中接受 ALL 口服化疗的家庭提供的支持有几个影响。支持性干预措施应考虑整个家庭及其需求，并应定期监测。应特别注意日常生活规律的制定和维持、父母的负担以及情绪影响，尤其是地塞米松。
