From qualitative work to intervention development in pediatric oncology palliative care research

Qualitative methods can be particularly useful approaches to use with individuals who are experiencing a rare disease and thus who comprise a small sample (such as children with cancer) and are at points in care that few experience (such as end of life). This data-based methods article describes how findings from a qualitative study were used to guide and shape a pediatric oncology palliative care intervention. Qualitative data can lay a strong foundation for subsequent pilot intervention work by facilitating the development of an underlying study conceptualization, providing recruitment feasibility estimates, helping establish clinically meaningful inclusion criteria, establishing staff acceptability of a research intervention, and providing support for face validity of newly developed interventions. These benefits of preliminary qualitative research are described in the context of this study on legacy-making, which involves reports of children (7-12 years of age) living with advanced cancer and of their parent caregivers

Songwriting intervention for cognitively-impaired children with life-limiting conditions: Study protocol

Investigations evaluating the effectiveness of music-based interventions as a complementary approach to symptom management and health promotion for cognitively-impaired children with life-limiting conditions and their families are needed to minimize the physical and psychological burdens on individuals and their caregivers. Songwriting is one music-based strategy for a remote family-centered complementary approach to improve outcomes for cognitively-impaired children with life-limiting conditions, their parents, and families. The overall purpose of this study is to test the feasibility and preliminary efficacy of a songwriting intervention for cognitively-impaired children (ages 5–17 years) who are receiving palliative or complex care and their parents. Specific aims are to: (1) determine the feasibility of songwriting for cognitively-impaired children with life-limiting conditions and their parents, and (2) examine preliminary efficacy of songwriting for child psychological distress and physical symptoms, parent psychological distress, and family environment. The protocol for this 1-group pre-and post-intervention clinical trial (N = 25) is described

Digital storytelling: An innovative legacy-making intervention for children with cancer.

BACKGROUND: This study examined the feasibility of a legacy-making intervention in children with cancer and the preliminary effects on outcomes related to quality of life. PROCEDURE: Children (N = 28) ages 7–17 years completed a baseline QOL questionnaire (PedsQL) at T1. After baseline, the intervention group (n = 15) completed a randomized intervention that guided children to answer questions about legacy-making and create a digital story about themselves. A final copy of the digital story was provided to the families. A control group (n = 13) received customary care. Children repeated the questionnaire at T2. Parents (N = 22) of children who completed the intervention completed follow-up survey questions regarding intervention effects. RESULTS: Feasibility was strong (78% participation; 1 attrition). While differences between the groups in physical, emotional, social, or school functioning change was not statistically significant, the intervention group showed slightly better emotional and school functioning compared to controls. Parents reported that their child’s digital story provided emotional comfort to them (n = 11, 46%), facilitated communication between parents and children (n = 9, 38%), and was a coping strategy for them (n = 4, 17%). Parents reported that the intervention helped children express their feelings (n = 19, 79%), cope (n = 6, 27%), and feel better emotionally (n = 5, 23%). CONCLUSIONS: Our intervention is feasible for children with cancer, is developmentally appropriate for children 7 to 17 years of age, and demonstrates promise to improve quality of life outcomes for children with cancer and their parents