Single parents caring for children with cancer were found to experience several cumulative stressors in addition to the current strain of caring for a child with cancer. The synergy of these cumulative stresses with the added strain of caregiving for a child with cancer may have long-term health and financial implications for parents. Broad-based policy interventions should focus on relieving the chronic strains associated with being a single parent of a child with cancer.

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PurposeTo develop and validate scales to measure constructs that survivors of childhood cancer report as barriers and/or facilitators to the process of transitioning from paediatric to adult‐oriented long‐term follow‐up (LTFU) care.MethodsQualitative interviews provided a dataset that were used to develop items for three new scales that measure cancer worry, self‐management skills and expectations about adult care. These scales were field‐tested in a sample of 250 survivors aged 15–26 years recruited from three Canadian hospitals between July 2011 and January 2012. Rasch Measurement Theory (RMT) analysis was used to identify the items that represent the best indicators of each scale using tests of validity (i.e. thresholds for item response options, item fit statistics, item locations, differential item function) and reliability (Person Separation Index). Traditional psychometric tests of measurement performance were also conducted.Results RMT led to the refinement of a 6‐item Cancer Worry scale (focused on worry about cancer‐related issues such as late effects), a 15‐item Self‐Management Skills scale (focused on skills an adolescent needs to acquire to manage their own health care), and a 12‐item Expectations scale (about the nature of adult LTFU care). Our study provides preliminary evidence about the reliability and validity of these new scales (e.g. Person Separation Index ≥ 0.81; Cronbach's α ≥ 0.81; test–retest reliability ≥ 0.85).ConclusionThere is limited knowledge about the transition experience of childhood cancer survivors. These scales can be used to investigate barriers survivors face in the process of transition from paediatric to adult care.

Parents of children with cancer can experience a range of health problems due to the emotional impact of a cancer diagnosis and the intensive and often prolonged nature of treatment and aftercare. Given the central role parents play as caregivers, it is crucial to understand the health impact of caregiving so that supportive interventions can be implemented as necessary.

Findings can be utilized to target survivors at risk for knowledge deficits.