Parent and clinician perceptions and recommendations on a pediatric cancer pain management app: A qualitative co-design study.

Pain is one of the most prevalent and burdensome pediatric cancer symptoms for young children and their families. A significant proportion of pain episodes are experienced in environments where management options are limited, including at home. Digital innovations such as apps may have positive impacts on pain outcomes for young children in these environments. Our overall aim is to co-design such an app and the objective of this study was to explore the perceptions of children's parents about app utility, needed system features, and challenges. We recruited parents of young children with cancer and multidisciplinary pediatric oncology clinicians from two pediatric cancer care centers to participate in audio-recorded, semi-structured, co-design interviews. We conducted interviews structured around technology acceptance and family caregiving theories until data saturation was reached. Audio-recordings were then transcribed, coded, and analyzed using thematic analysis. Forty-two participants took part in the process. Participants endorsed the concept of an app as a useful, safe, and convenient way to engage caregivers in managing their young child's pain. Overall, the app was valued as a means to provide real-time, multimodal informational and procedural pain support to parents, while also reducing the emotional burden of pain care. Recommendations for intervention design included accessibility-focused features, comprehensive symptom tracking, and embedded scientific- and clinically-sound symptom assessments and management advice. Predicted challenges to app use included the workload burden it may place on parents and clinicians. The insights gathered will inform the design principles of our future childhood cancer pain digital research.

The Impact of Primary Language Spoken on the Pain Experience of Children With Cancer.

The purpose of the current prospective cohort study was to determine if acculturation, measured by primary language spoken, impacts the pain response of children being treated for cancer during an experimental pain task. Sixty-seven Spanish-speaking and English-speaking children ages 6 to 18 years being treated for cancer provided ratings of pain and upset severity during the completion of the cold pressor task (CPT). One week following the CPT, participants provided their recollection of average pain and upset during the CPT. Repeated measures analysis of variance revealed Spanish-speaking children reported significantly higher pain (F1,64=5.58, P=0.02) and upset (F1,64=7.69, P=0.007) ratings during the CPT compared with English-speaking children. Also, Spanish-speaking children were over 4 times as likely to remove their hands from the water before the CPT 4-minute uninformed ceiling compared with English-speaking children (P=0.002). These findings suggest that cultural and contextual factors, including the level of acculturation, are important considerations in the assessment and management of pain in children with cancer. Future research should continue to examine the mechanisms underlying the association between acculturation and the symptom experience for children receiving treatment for cancer.

Immunological and psychosocial functioning in parents of children with cancer.

PURPOSE: Research has shown that parents of children with cancer exhibit an altered immune profile compared to parents of healthy children, reflective of increased susceptibility to illness. These parents are also at risk for poorer psychosocial outcomes and quality of life. The current study compares peripheral blood cell analyses and psychosocial self-reports from parents of children being treated for cancer (n = 21) to parents of healthy children (n = 30). METHODS: A blood sample was drawn from parents to analyze immune profiles. Parents also completed the Perceived Stress Scale (PSS), Medical Outcomes Study Short Form-36 (MOS), and Patient-Reported Outcomes Measurement Information System Short Form v1.0 Emotional Distress-Anxiety 8a, and Emotional Distress-Depression 8a (PROMIS). Mann-Whitney U tests and independent samples t-tests were conducted to examine differences in outcomes between parent groups. RESULTS: Parents of children with cancer exhibited higher monocyte percentages in their peripheral blood compared to peers with healthy children. Parents of children with cancer also reported poorer psychosocial outcomes: higher perceived stress, higher anxiety and depression symptoms, more role disability resulting from emotional problems, poorer general and mental health, and poorer social functioning. CONCLUSION: These findings support research that has shown a direct effect of chronic stress on the immune system. Symptoms reported by parents of children with cancer indicate unmet psychosocial needs that could potentially affect long-term health. Given the central role of parents in their children's cancer care, it is compelling to address and work to improve parent immunological and psychosocial well-being.

Improving Children's cancer pain management in the home setting: Development and formative evaluation of a web-based program for parents.

BACKGROUND AND METHODS: Despite advances in health care, the majority of children undergoing cancer treatment experience pain, particularly in the home setting. Mobile health tools provide a promising avenue to deliver pain management education and information to parents of children receiving cancer treatment. The current study describes the development and formative evaluation of a novel intervention, Cancer-Tailored Intervention for Pain and Symptoms (C-TIPS), which provides empirically-based pharmacological and non-pharmacological pain management information and coping skills training to parents of pediatric cancer patients. C-TIPS is a web-based application including a tailoring algorithm, customization tools, guided diaphragmatic breathing training, relaxation practice, and educational material (COPE modules). Thirty parents of children undergoing chemotherapy treatment for cancer participated in this initial mixed methods pilot study. Participants completed quantitative measures assessing their stress and relaxation ratings and satisfaction with C-TIPS. Formative evaluation and qualitative data were collected using individual and group interviews. RESULTS: Parents reported high satisfaction with both the educational and skills training modules of C-TIPS (ps < 0.001). Parent self-reported stress significantly reduced (p = 0.004) and relaxation increased (p = 0.05) following participation with the skills training module. CONCLUSIONS: C-TIPS is a feasible and well-received web-based intervention that promises to improve pain management in children undergoing cancer treatment, improve stress management in parents, and increase parents' knowledge and understanding of their child's cancer treatment. Results from the current study will help make improvements to C-TIPS in preparation for a randomized-controlled trial of this innovative program.