Our results indicate that greater self-reported memory impairment increases childhood cancer survivors' care needs. We additionally suggest that supportive care interventions might best target those reporting work or education interruption due to cancer. Identification of ASCCs who report work/school interruptions may provide a quick screen for health providers to assess possible need for intervention. ASCCs still experience unmet needs long into survivorship.
Objective Given the high levels of pain and low rates of treatment adherence in children with juvenile idiopathic arthritis (JIA) and their families, this study sought to examine the relationship between parent pain cognitions (i.e., pain catastrophizing, fear of pain) and treatment adherence, and how barriers to treatment (e.g., forgetting treatments, children resisting injections) may be implicated in this relationship. Methods Parents of children under 18 years of age who have been diagnosed with JIA were recruited to complete an online survey. In total, 221 parents (93% mothers) of children aged 2–17 years (M = 11.10, SD = 4.25) took part, completing questions regarding their pain cognitions, perceived barriers to treatment, and their child’s arthritis treatment adherence ability. Results Hierarchical regressions demonstrated that both pain cognitions (i.e., pain catastrophizing and fear of pain) were related to a decrease in parent-reported treatment adherence, however, pain catastrophizing was no longer significant when fear of pain was added to the model. The presence of treatment barriers partially mediated the relationship between fear of pain and treatment adherence, above and beyond the alternate model proposed. Conclusion These results suggest that parent pain catastrophizing and fears of pain are related to a greater difficulty following treatment plans, possibly in part because of barriers parents experience that preclude adherence. Given these findings, the identification and management of parent pain cognitions is critical to improving treatment adherence and outcomes for children with JIA and their families.
In cancer support groups, choice of therapy model, leadership style, and format can impact patients’ experiences and outcomes. Methodologies that illustrate the complexity of patients’ group experiences might aid in choosing group style, or testing therapeutic mechanisms. We used this naturalistic study as a beginning step to explore methods for comparing cancer group contexts by first modifying a group-experience survey to be cancer-specific (Group Experience Questionnaire (GEQ)). Hypothesizing that therapist-led (TL) would differ from non-therapist-led (NTL), we explored the GEQ’s multiple dimensions. A total of 292 patients attending three types of groups completed it: 2 TL groups differing in therapy style ((1) Supportive-Expressive (SET); (2) The Wellness Community (TWC/CSC)); (3) a NTL group. Participants rated the importance of “Expressing True Feelings” and “Discussing Sexual Concerns” higher in TL than NTL groups and “Discussing Sexual Concerns” higher in SET than other groups. They rated “Developing a New Attitude” higher in TWC/CSC compared to NTL. In addition, we depict the constellation of group qualities using radar-charts to assist visualization. These charts facilitate a quick look at a therapy model’s strengths and weaknesses. Using a measure like the GEQ and this visualization technique could enable health-service decision making about choice of therapy model to offer.
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