The Experiences of Parents of Pediatric Patients With Acute Lymphoblastic Leukemia, 2 Months After Completion of Treatment

Abstract

Diagnosis and treatment of childhood acute lymphoblastic leukemia (ALL) can be a highly stressful time for the entire family. While completion of treatment may bring relief to some families, it may also bring about additional anxieties and fear. The primary objective of this article is to present an analysis of the experiences, emotional states, and support needs of parents of pediatric cancer patients 2 months after treatment completion for ALL. Using a qualitative interpretive description approach, transcripts from interviews with 17 parents from the leukemia/lymphoma program of a large urban pediatric cancer center were analyzed using N-Vivo 10 data analysis software. Parents reported simultaneous feelings of relief and apprehension, changing relationships with their health care team and the experience of returning to a life following treatment. Results highlight the need for support for parents on completion of treatment.

Perceptions of changes in clinical, informational, and supportive relationships after end of treatment among parents of young childhood cancer survivors

“…The period around the end of treatment (EOT) has been shown to be characterized by parental emotional distress, even if in the context of other positive emotions . The transition off of treatment and into survivorship marks a dramatic change in the relationship between parents and the clinical care team.…”

“…The present study adds to prior research on the parent experience of transitioning off treatment and into LTS—defined in this study by parents as a new phase beginning around two years off treatment—by focusing on parent perceptions of transitions in clinical support. While the personal, emotional dimensions around EOT have been described previously, little qualitative data has been published on how shifting clinical relationships are perceived and how these perceptions relate to parents' engagement in follow‐up care and articulation of unmet information and resource needs. The primary aim of this study was to identify parent perceptions of clinical survivorship care relationships and support and to develop a thematic model that characterizes patterns of parent experience after EOT and into LTS.…”

“…The period around the end of treatment (EOT) has been shown to be characterized by parental emotional distress, [21][22][23] even if in the context of other positive emotions. 24,25 The transition off of treatment and into survivorship marks a dramatic change in the relationship between parents and the clinical care team. The regular routine of treatments and lab appointments abruptly ends, followed by increasingly extended intervals between follow-up appointments that eventually transition into even larger intervals between survivorship clinic appointments.…”

“…While the personal, emotional dimensions around EOT have been described previously, [23][24][25] little qualitative data has been published on how shifting clinical relationships are perceived and how these perceptions relate to parents' engagement in follow-up care and articulation of unmet information and resource needs. The primary aim of this study was to identify parent perceptions of clinical survivorship care relationships and support and to develop a thematic model that characterizes patterns of parent experience after EOT and into LTS.…”

Cancer-related effects on relationships, long-term psychological status and relationship satisfaction in couples whose child was treated for leukemia: A PETALE study

“…That is, parents might report greater relationship distress two years after diagnosis (compared to the time of diagnosis and survivorship period) because this coincides with the end of their child’s treatments and the re-entry period. This is a time when specialized resources offered to the family are reduced and parents have to readjust to their child reintegrating into their normal family routine [ 37 ]. These changes may create relationship strain.…”