Addressing parenting concerns of bone marrow transplant patients: opening (and closing) Pandora's box

Abstract

Although a significant number of adults undergoing stem cell transplant (SCT) or bone marrow transplantation (BMT) care for dependent children, and these treatments pose significant challenges for families, research has virtually ignored the impact of parenting on patients' quality of life during BMT/SCT and children's responses to having a parent undergo these treatments. Physicians rarely inquire about parenting concerns related to the extended hospitalizations necessitated by these treatments, yet clinical experience suggests that addressing patient concerns about children's reactions to cancer and BMT/SCT can improve the experience of the patient and the patient's family, and help the medical team respond effectively to sources of patients' distress. Parents frequently want to know what reactions to expect from children, thus general developmental information is reviewed, and recommendations given for when professional help for children is warranted. A key way for parents to support their children is with open, honest communication; however, parents often find it extremely difficult to talk about cancer and BMT/SCT with their children. The medical team can assist patients' efforts to communicate with and support their children by asking about a patient's children, providing some targeted information, and discussing the potential impact of treatments on parenting capacity. Inquiring about and addressing parenting concerns may initially seem difficult, but can ultimately facilitate stronger doctor-patient alliances, and more compassionate care.

Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review

“…37 Mothers tend to be the ones to quit their job, relocate, and assume the care and support of the child. Fathers are also present during the long hospital stays, however, they tend to keep their job, and usually come in and out of the 20% of parents had clinically significant levels of stress pre-transplant 56% of parents had clinically significant levels of stress one month post transplant 41% of parents had clinically significant levels of stress 6 months post transplant Manne et al 44 20% of mothers had clinically significant levels of stress 18 months post-HSCT; 35% had comorbid anxiety and depressive diagnoses Nelson et al 43 66% of mothers had clinically significant levels of depression pre-HSCT Barrera et al 14 8% of mothers had clinically significant levels of depression 1-week before HSCT 50% of mothers had clinically significant levels of anxiety 1-week before HSCT Coping Rodrigue et al 37 Use of more coping strategies at 1-month post transplantation than at pre-transplant and 6 months post transplant Family functioning Rodrigue et al 37 Lower levels of family conflict, perceived family burden and more family resources at 1 month than at 6 months post transplant Moore and Rauch 38 Open and honest communication favors psychological adjustment Jobe-Shields et al 42 Highly distressed parents and children show poor adjustment despite family cohesiveness…”

“…31 Some other sources of parental stress include relocating to the transplant center, living in two separate households, commuting between the home and the transplant center, concurrently caring for other family members, work-related changes, lengthy hospital stays, financial burdens, parental informed consent for the HSCT procedure, dealing with medication compliance and other medical complications. [37][38][39] In addition to these difficulties, the emotional stress parents experience may stem from worry, concern and guilt regarding a child undergoing the HSCT procedure, apprehension regarding losing a child and fear of relapse once the HSCT procedure is completed. 40 See Table 5 for a list of studies describing parents' psychosocial reactions.…”

Children's emotional adaptation to parental BMT

“…5 A study of the concerns of parents undergoing a BMT about their dependent children included questions regarding what information to convey, but no specific data were obtained pertaining to the children themselves. 2 Evidence indicates that despite the increased use of BMT, research concerning the adaptation of children to parental BMT has been minimal.…”

“…Furthermore, separation of the recipient parent from the family during hospitalization, caregiving demands when the parent returns home, and post-transplant financial constraints and medical complications disrupt family members' roles, responsibilities and routines. 2,3 These changes result in distress for the BMT recipient, the family caregiver and consequently impact children. 3,4 Previous studies have focused on recipient and caregiver psychological and behavioral responses to BMT.…”

“…(1) How does child adaptation as indicated by emotional response change across the parental BMT trajectory? (2) What are the time points of greatest vulnerability for children throughout the trajectory? (3) What factors are associated with child emotional adaptation?…”