Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Wilford JG

PROVIDER: S-EPMC7853491 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Publications

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

Wilford Justin G JG Hopfer Suellen S Wenzel Lari L

Psycho-oncology 20190314 4

<h4>Background</h4>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.<h4>Methods</h4>In-depth, semistructured interviews were conducted with 20 English- ...[more]

PMID: 30812064

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Project description:BackgroundTaking care of children diagnosed with cancer affects parents' professional life. The impact in the long-term however, is not clear. We aimed to compare the employment situation of parents of long-term childhood cancer survivors with control parents of the general population, and to identify clinical and socio-demographic factors associated with parental employment.MethodsAs part of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to parents of survivors aged 5-15 years, who survived ≥5 years after diagnosis. Information on control parents of the general population came from the Swiss Health Survey (restricted to men and women with ≥1 child aged 5-15 years). Employment was categorized as not employed, part-time, and full-time employed. We used generalized ordered logistic regression to determine associations with clinical and socio-demographic factors. Clinical data was available from the Swiss Childhood Cancer Registry.ResultsWe included 394 parent-couples of survivors and 3'341 control parents (1'731 mothers; 1'610 fathers). Mothers of survivors were more often not employed (29% versus 22%; ptrend = 0.007). However, no differences between mothers were found in multivariable analysis. Fathers of survivors were more often employed full-time (93% versus 87%; ptrend = 0.002), which remained significant in multivariable analysis. Among parents of survivors, mothers with tertiary education (OR = 2.40, CI:1.14-5.07) were more likely to be employed. Having a migration background (OR = 3.63, CI: 1.71-7.71) increased the likelihood of being full-time employed in mothers of survivors. Less likely to be employed were mothers of survivors diagnosed with lymphoma (OR = 0.31, CI:0.13-0.73) and >2 children (OR = 0.48, CI:0.30-0.75); and fathers of survivors who had had a relapse (OR = 0.13, CI:0.04-0.36).ConclusionEmployment situation of parents of long-term survivors reflected the more traditional parenting roles. Specific support for parents with low education, additional children, and whose child had a more severe cancer disease could improve their long-term employment situation.

Dataset Information

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

Background

Methods

Results

Conclusion

Publications

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

Similar Datasets

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