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

Physiological and behavioral effects of animal-assisted interventions for therapy dogs in pediatric oncology settings

Over the past two decades, animal-assisted interventions (AAIs), defined as the purposeful incorporation of specially trained animals in services to improve human health, have become increasingly popular in clinical settings. However, to date, there have been few rigorously-designed studies aimed at examining the impact of AAIs on therapy animals, despite a notable potential for stress. The current study measured physiological and behavioral stress indicators in therapy dogs who participated in AAI sessions in pediatric oncology settings, while also examining the psychosocial effects for patients and their parents. This manuscript describes the study’s canine stress findings. Methods: A total of 26 therapy dog-handler teams were paired with newly diagnosed children with cancer at five children’s hospitals in the United States. These teams provided regular AAI visits to the child and his/her parent(s) for a period of four months. The teams completed a demographic form, the Canine Behavioral Assessment & Research Questionnaire (C-BARQ), and a self-report survey to document the types of activities that occurred during each session. Canine saliva was also collected at five baseline time points and 20 minutes after the start of study sessions for cortisol analysis, and all study sessions were video recorded to document the dog’s behavior via an ethogram measure. Results: Data showed no significant differences in salivary cortisol levels between baseline (0.51µg/dL) and AAI sessions (0.44µg/dL), p = 0.757. Higher salivary cortisol was significantly associated with a higher number of stress behaviors per session (p = 0.039). There was a significant relationship between stress and affiliative session behaviors (pConclusions:Results show that therapy dogs did not have significantly increased physiological stress responses, nor did they exhibit significantly more stress-related behaviors than affiliative-related behaviors, while participating in AAIs in pediatric oncology settings. The significant relationship between canine cortisol and behavior, thus strengthening the argument for the use of cortisol in canine well-being research. This study discusses the importance of further investigation to confirm these findings, which may lead to enhanced canine involvement in hospital settings

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

Pilot study of symptom burden and quality of life among families of children in palliative care or hospice

Purpose: Despite calls for improvement in pediatric palliative care, children may have significant suffering at end-of-life (EOL). Research is limited and relies heavily on retrospective reports from mothers or nurses. We prospectively assessed symptom burden and quality of life (QOL) among children with life limiting conditions to examine concordance across multiple informants (i.e., mother, father, child, nurse). Method: Families were recruited shortly after their child (ages 5-18) was enrolled in palliative care or hospice. Of 36 eligible families, 8 children died before recruitment. Of the remaining 28, 25 (89%) participated. Participants included 25 mothers, 14 fathers, 12 children (Mage = 11.4, SD = 3.4). On average, the sample of children was White (72%) and female (52%); 60% had complex chronic conditions, and 40% had cancer. Mothers, fathers, nurses, and children (who were able to self-report) completed the Memorial Symptom Assessment Scale (MSAS), and parents and children completed the PedsQL in the home. Results: A similar number of symptoms were reported for children by mother (M = 9.5, SD = 3.3), father (M = 10.3, SD = 3.0), and self-report (M = 10.6, SD = 3.3), but nurses (M = 5.3, SD = 3.3) reported about half as many symptoms (p \u3c .01). For composite symptom scores (i.e., weighted for frequency, severity, bother), nurses reported the highest scores, followed by mothers, fathers, and children. Paired t-tests show differences between nurse and mother (p \u3c .08), nurse and father (p \u3c .01), and mother and father (p \u3c .01) composite scores. QOL was well below normal according to mothers (M = 50.4, SD = 22.1), fathers (M = 40.9, SD = 18.7), and children (M = 53.2, SD = 17.6). Higher symptom burden was strongly and consistently associated with worse QOL across informants (r = -.34 to -.69). Conclusion: Preliminary findings indicate high symptom burden in children at EOL and its negative impact on the child’s QOL. Nurses report significantly fewer symptoms than families but higher composite scores when considering frequency, severity, and bother. Implications for Practice: Discrepant reports on symptom burden indicate significant gaps in communication between families and healthcare providers, as well as the need for future research to inform clinical care and improve the QOL of children at the EOL