How do parents perceive high-dose chemotherapy and autologous stem cell transplantation for their children

Abstract

Summary:Our objective was to understand the parents' perception of children treated in an ASCT unit. Parents (40) of children and adolescents were interviewed by the department psychiatrist-psychoanalyst, over 9 months. They expressed great distress (22), considerable difficulty in assuming their parental role (with feelings of helplessness and guilt), and had distorted relations with the child whose behavior was unusual and incomprehensible (22). The relation with care providers, who should be 'all-powerful' and harmless, was ambivalent (15). They found it difficult to think or refused to do so, because their 'thoughts are terrifying', and they wanted to forget everything (11). The couple was going through a crisis (9). Temporal landmarks were disturbed (8); ASCT was experienced as a threatening discontinuity in the course of treatment (parents were unable to think of the past, the future, or the present); social landmarks were disturbed (6) with loss of social and professional relations. We concluded that parents may experience intense distress and disorientation. Trained to understand the parents' and their children's thoughts and behavior, the medical team, which includes a psychooncologist, can better help them to understand and support the children, to strike a balance between their parental role and other responsibilities, and prevent conflicts.

Parent Outlook: How Parents View the Road Ahead as They Embark on Hematopoietic Stem Cell Transplantation for Their Child

“…In 2 qualitative studies of parents of children undergoing HSCT, parents expressed their fear of the perils of HSCT and described being either incapable or unwilling to think about the situation or their child’s potential outcome [14,18]. Some actively pushed the possibility that their child might die out of their minds, whereas others simply denied this possibility [14].…”

“…Studies suggest that parents’ contemplation of HSCT risks and adverse outcomes may be influenced by their sense of culpability for a potentially poor outcome, their lack of control over the situation, and the absence of an alternative treatment offering cure [18,25]. The highly cure-oriented setting of HSCT and the social desirability of positive thinking [26,27] also may promote thoughts focused on positive outcomes.…”

Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parents

“…19,20 In 2005 Phipps et al 21 presented data on parents of 151 children undergoing HSCT, studied upon admission and monthly throughout a 6 months period. They reported that there are identifiable predictors of parental distress, such as previous parent and patient illness-related distress, premorbid child internalization behavior problems and parental avoidance of coping, and they suggest that if these predictors can be identified at an early stage one may identify parents who are in need of intervention.…”

Parents' Thoughts and Perceptions on Hearing that Their Child Has Incurable Cancer

“…31 Parents find it difficult to assume and fulfill their parental roles in light of the trajectory that childhood cancer treatments inevitably take. 32 Therefore, it is important for doctors as well as the health care nurses-whose major role is the daily care of the child and the parents-to participate in the end-of-life decision-making process. Health care providers need to support parents by letting them think that they can protect their child, while sharing in the experiences through which parents have been able to realize the sense of ''being a parent.''…”