In 2018, an estimated 381,777 children were impacted by a parental diagnosis of cancer, not including children whose parents had been previously diagnosed. During their treatment, the parents’ emotional and physical state are altered due to side effects of various cancer therapies. While undergoing treatment, parents would like to comfort and assist their children in coping and understanding their cancer. However, as cancer patients, their ability to help children navigate the confusing and scary reality may be compromised by the effects of the disease and its management. Additionally, many parents may fear increasing their child’s anxiety by engaging in a conversation about their cancer diagnosis. Because of the parents’ physical and emotional state, children are left to internalize their parent’s changed behavior and interpret their cancer diagnosis without guidance. Children can produce explanations and create imagery, generally incorrect, about the cancer. Unfortunately, there are limited resources to help parents control the emotional toll of their cancer on the child.
The Enhancing Connections Program (EC), is the only completed Phase III clinical trial of a cancer parent education program. The results of the Phase III trial revealed that parents in the intervention group improved their depressive mood, parenting skills, anxiety, parenting quality, and parenting confidence compared to controls in trial. The children in the intervention group improved in measures of behavioral-emotional adjustment and total behavior problems; in addition, their anxiety/depressed mood and ability to externalize problems decreased. The EC program was delivered face-to-face. A group-delivered version of the education program within provider settings in the community was needed for sustainability. The Lewis Group, in the Public Health Sciences Division, reported on the process by which they collaborated with the Cancer Support Community (CSC), a national nonprofit organization with emphases on family-focused support, to conduct a pilot feasibility study of the EC. The article was published in the Journal of Psychosocial Oncology.
The EC program included a Patient Educator Manual, a Parent Workbook, and handouts for dissemination during each session. The researchers developed specific instructions for each session to guide the Beta site group facilitators within 1.5 hours. Additional script was added to the Parent Educator Manual, now called the Group Facilitator’s Manual (EC-G). The newly formatted EC-G materials were reviewed by group facilitators and program directors at each of the three Beta test sites. No changes were made to the newly revised program materials after interviews were conducted between the Lewis Group, facilitators, and directors. In the interview, the researchers asked the facilitator and directors to assess the content, relevance of in-session exercises, acceptability of in-session role-play, and ability to complete homework for their clients.
The Beta testing sites were trained in cancer support community. Two group facilitators from each Beta site were trained in the delivery of the EC program. The intervention was delivered using four principal channels: presentation to oncology providers, direct outreach to patients and families at resident cancer treatment centers, study brochures, and recruitment materials for self-referral at oncology clinics and Beta test sites, and electronic circulation of study brochures and recruitment materials.
To be eligible for the study, patients had to be parents or guardians who were diagnosed with non-metastatic cancer (Stages 0-III) within the past 12 months and had a child 5-17 years old who must have lived at home at least 50% of the time. All potential participants were screened by the Beta test site’s study staff to guarantee eligibility. During Session 1 of the EC program, participants completed a consent form and baseline measures. Sessions were scheduled at 2-week intervals. At the end of the program (Session 5), the parent completed questionnaires that were the same set as the baseline measures. The baseline and end of study psychometric measures included: depressed mood, anxiety, parenting self-efficacy, CASE-help child subscale, parenting quality, parenting skills, child and behavioral-emotional adjustment.
A total of 16 participants completed the baseline and post-intervention questionnaires; most of the participants were women (n=15). Majority of the children were female (n=11) and the average age of the children was 10.4±2.4 years. The parents were diagnosed with the various types of cancers: breast cancer (n=11), colorectal cancer (n=1), basal skin cancer (n=1), bladder cancer (n=1), and lymphoma (n=1). The stages of cancer ranged from 0 to 3: Stage 0 (n=3), Stage I (n=1), Stage 2 (n=9), Stage III (n=3). The Lewis Group utilized three study aims to evaluate sectors of the study. In particular, study aim 2 examined the impact of the group-delivered program using a pre-post t-test design. The baseline and post-intervention scores were computed using the non-parametric Wilcoxon Signed Rank test, 2 tailed, p=.05.
Based on the results, parent’s scores on depressed mood and anxiety decreased significantly between baseline and post-intervention (p=.02). Parents’ scores on parenting self-efficacy improved between baseline and post-intervention (p=.001). Parenting quality (p=.001), parenting skills (p=.001), and child behavioral and emotional adjustment (p=.07) also improved.
Although the study had a very small sample size, two of the psychometric measures showed statistically significant improvements: the parents’ anxiety and parents’ self-efficacy – which are measures of parenting quality. A larger sample size within a randomized control group is needed to further evaluate the psychometric measures before and after the intervention. The Lewis group stated that future studies should expand the eligibility criteria to those with advanced cancer, younger children, and diagnosed longer than 12 months. Although preliminary, the study demonstrated that a cancer education program targeting parents could have a significant impact on the lives of parent and child.
This research was supported by a grant from the National Cancer Institute.
Fred Hutch/UW Cancer Consortium members Frances Marcus Lewis contributed to this work.
Lewis FM, Zahlis EH, Shands ME, Griffith KA, Goldberger S, Shaft A, Kennedy R, Rice A. A pilot feasibility study of a group-delivered cancer parenting program: Enhancing Connections-Group. Journal of Psychosocial Oncology. 2020 May 4:1-6. https://doi.org/10.1080/07347332.2020.1745987