A community‐based trial of a psychosocial eHealth intervention for parents of children with cancer

Abstract

Background The Electronic Surviving Cancer Competently Intervention Program (eSCCIP), a psychosocial eHealth intervention for parents and caregivers of children with cancer (parents), was delivered in a community‐based psychosocial oncology center. Primary endpoints were intervention acceptability, feasibility, and accessibility, with a secondary exploratory focus on psychosocial outcomes. Procedure Oncology therapists in a psychosocial oncology center were trained in eSCCIP delivery. Participants were eligible for participation if they were the primary caregiver of a child with cancer between the ages 0 and 17, could read and write in English, and had reliable internet access to complete eSCCIP. Surveys were administered electronically at baseline and post intervention to evaluate study endpoints. Effect sizes (Cohen's d) were computed for exploratory psychosocial outcomes. Nineteen parents completed the intervention. Results Parents rated eSCCIP as highly acceptable, feasible, and accessible. A large clinical effect was detected for acute distress (d = 0.79). Moderate clinical effects were reported for overall posttraumatic stress disorder (PTSD) symptoms (d = 0.37), negative mood/cognitions (d = 0.59), and symptoms of anxiety (d = 0.48). Conclusions Results indicate that eSCCIP is an acceptable, feasible, and accessible psychosocial intervention for parents. Exploratory analyses suggest that participation in eSCCIP may contribute to decreases in acute distress, symptoms of anxiety, and symptoms of PTSD.

Providing Psychological Support to Parents of Childhood Cancer Survivors: ‘Cascade’ Intervention Trial Results and Lessons for the Future

“…Second, the lack of a positive finding may have been due to Cascade’s preventative approach, which did not restrict enrolment to parents with poor HRQL or high distress. Aligning with parents in other studies [ 23 , 72 , 73 , 74 ], many of our participating parents actually reported good HRQL and low depression/anxiety at baseline (Q1) and may have had a low need for further help, limiting the relative improvement that could be achieved. It is possible that a program delivered further off treatment, when survivors’ risk of late medical complications and challenges of developing independence into adulthood are increased, may be more effective.…”

“…Aligning with other studies in the field [ 23 ], we experienced significant challenges with recruitment. While we were not able to calculate response rates at each site, it was more difficult to recruit parents from hospitals other than the lead site: 34 parents from Sydney Children’s Hospital completed the baseline (Q1) questionnaire, versus only 22 parents across the remaining 7 hospitals.…”

“…Given parents’ risk of psychological difficulties, international standards of care state that parents should have early and ongoing access to psychosocial support and evidence-based interventions throughout their child’s cancer trajectory [ 21 ]. Psychological interventions can be effective for parents of children with cancer and other serious illnesses [ 22 , 23 ], yielding small–moderate improvements in QOL, anxiety, and other outcomes [ 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. Cognitive behavior therapy (CBT) interventions that increase parents’ use of adaptive coping strategies may also enhance their parenting skills, reduce parents’ risk of depression/anxiety, and in turn benefit the whole family [ 15 , 19 , 30 ].…”

“…However, few interventions have implemented evidence-based treatments [ 31 , 32 ] and many have not been evaluated with rigorous research designs in pediatric oncology [ 7 , 24 , 25 , 27 ]. With the exception of the eSCCIP [ 23 ], most interventions are also implemented face-to-face, limiting benefits to rural-remote families [ 7 , 25 , 27 , 33 ].…”

Parental Distress in Pediatric Inflammatory Bowel Diseases: Associations With Time From Diagnosis, Disease Activity, and Demographic Factors

“…These internet and mobile-app-based platforms are increasingly common and recent community-based trials suggest they may be effective in decreasing distress, symptoms of anxiety, and symptoms of PTSD in parents with children with chronic medical conditions. 64–66 …”