Methods
This study was a secondary analysis of data collected as a part of a
randomized controlled trial examining the effects of a legacy
intervention for children with advanced cancer and their
parents.24 After obtaining Institutional Review Board
approval, parents of children with cancer were recruited between 2015
and 2018 through the use of Facebook advertisements. Advertisements
targeted parents in the United States who had “liked” or “followed”
other childhood cancer-related Facebook pages. Advertisements included a
REDCap (a secure online software for the development and analysis of
research data)25,26 survey link which described the
study and asked basic screening questions, followed by a prompt for
demographic and contact information. Study personnel contacted
interested individuals within a week to discuss the study further.
Eligibility criteria included children diagnosed with relapsed or
refractory cancer aged 7 to 17 years and their primary parent caregivers
(aged 18 or older) who were fluent in English, without cognitive
impairment, and had internet access. The study coordinator obtained
verbal parent consent and child assent. Written consent was waived per
the IRB. Child-parent dyads were randomized 1:1 to a usual care or
intervention group.
After consent, parents completed a demographic survey, including dates
of diagnosis and relapse, if applicable. In addition to baseline (T1)
and post-intervention (T2) measures of child quality of life and child
and parent coping, children and parents completed the Parent-Adolescent
Communication Scale (PACS)27 via REDCap to assess
parent-child communication. The 20-item PACS consists of two subscales,
openness of and problems in communication, prompting participants to
select their rating on a 5-point Likert scale from “strongly disagree”
to “strongly agree.” Higher scores for the openness subscale and lower
scores for problem subscale suggested higher quality of communication.
An overall communication score is then derived, with higher scores
indicating better communication. Children were asked to complete the
measure twice – once regarding communication with their mother and
again regarding communication with their father. Parent participants
completed the questionaire about communication with their child with
cancer. Cross-sectional baseline demographic and PACS data from T1 only
were included in this secondary analysis.
Data were analyzed using IBM SPSS Statistics Version 27. Frequency
distributions were used to summarize the nominal and ordinal variables.
Due to skewness, median and interquartile range (IQR) were used to
summarize the continuous variables of age, time since diagnosis/relapse,
and the PACS scores. Spearman’s Rho coefficients assessed the
correlations between the PACS scores and time since diagnosis/relapse.
Statistical significance was determined by an alpha of 0.05 (p
< 0.05).