Background: Parents of childhood cancer patients experience changes in relationships with their health-care team as the child transitions from treatment to long-term survivorship (LTS). These changes may affect parent receptivity of survivorship-health-related programs, yet little is known about the experience of changing clinical relationships for parents as treatment ends and children transition into LTS.
Methods: In-depth, semistructured interviews were conducted with 20 English-speaking parents of childhood cancer survivors less than 13 years old who were greater than 1-year posttreatment. Audiotaped, transcribed interview content was analyzed using emergent themes grouped and refined in a process of multistaged constant comparison.
Results: There was a consensus among parents regarding the emotional stressors of the period immediately after the end of treatment. Regardless of positive or negative recollection of treatment, parents commonly viewed their health-care team with affection and this period as one of stability and security. Transitioning off treatment was viewed as a severe disruption of the security of weekly, treatment-related contact with nurses, nurse practitioners, physician's assistants, and physicians. LTS was generally viewed as presenting lower levels, but new types of stress as new, psychosocial late effects were seen to emerge. Clinical needs shifted to prevention and late-effect management.
Conclusion: Parents of young childhood cancer survivors experience a similar emotional trajectory from treatment to transitioning off treatment and into LTS. This period is seen by parents as uniquely distressing because it represents a disruption of the hard-won safety represented by regular clinical relationships.
Keywords: childhood cancer; parent distress; psychosocial late effects; survivorship.
© 2019 John Wiley & Sons, Ltd.