West Christina H, Dusome Debra L, Winsor Joanne, Rallison Lillian B
University of Manitoba, Winnipeg, Manitoba, Canada.
Brandon University (Winnipeg site), Winnipeg, Manitoba, Canada.
Qual Health Res. 2020 Jun;30(7):1125-1138. doi: 10.1177/1049732320912410. Epub 2020 Apr 4.
Pediatric hematopoietic stem cell transplant (HSCT) is an intensive treatment that can be life-threatening. All family members experience distress. We conducted a grounded theory study using a family systems-expressive arts framework to develop a theoretical understanding of the family experience of HSCT. Six families (15 family members) participated in two interviews, drew an image, and were guided through a process. Participants did not always perceive HSCT as an experience they had lived as a family and were surprised to hear other family members' experiences. While one mother drew, she suddenly understood it was not only her ill child, but the entire family who had "fallen down the rabbit hole." The family experience of HSCT is described across (a) the pre-HSCT trajectory, (b) family fragmentation (hospitalization), and (c) family reintegration. We identified a critical need for targeted family intervention during the transition into HSCT, throughout and following hospitalization.
儿科造血干细胞移植（HSCT）是一种强化治疗，可能危及生命。所有家庭成员都会经历痛苦。我们使用家庭系统-表达性艺术框架进行了一项扎根理论研究，以深入了解HSCT家庭经历的理论。六个家庭（15名家庭成员）参与了两次访谈，绘制了一幅图像，并经历了一个过程。参与者并不总是将HSCT视为他们作为一个家庭共同经历的事情，听到其他家庭成员的经历时会感到惊讶。一位母亲在画画时，突然意识到不仅是她生病的孩子，而是整个家庭都“掉进了兔子洞”。HSCT的家庭经历可分为以下几个阶段：（a）HSCT前的轨迹，（b）家庭分裂（住院），以及（c）家庭重新融合。我们发现，在进入HSCT的过渡阶段、住院期间及之后，迫切需要有针对性的家庭干预。
