Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer
child; human; palliative therapy; female; major clinical study; male; article; cancer recurrence; adolescent; satisfaction; caregiver; cancer resistance; Advanced cancer
Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous work included the development of a legacy intervention using face-to-face digital storytelling for children with cancer that showed feasibility and strong promise to improve child outcomes. However, face-to-face intervention delivery techniques limited our recruitment, thus decreasing sample size and potential access to broader populations. Here we present the systematic steps of the development of a web-based legacy intervention for children (7-17 years of age) with relapsed or refractory cancer and their parent caregivers. Counts and frequencies for parent (n = 81) reports on satisfaction surveys are presented and parent suggestions for future work. Results suggest the web-based legacy intervention is feasible and acceptable, with parent-perceived beneficial outcomes for the child, parent, and family. Results provide a foundation for web-based intervention development in palliative care and the implementation of a theoretically grounded intervention to reduce suffering of seriously ill children and their family members, thereby advancing the science of symptom management in vulnerable palliative care populations.
Akard T F; Wray S; Friedman D L; Dietrich M S; Hendricks-Ferguson V; Given B; Gerhardt C A; Hinds P S; Gilmer M J
Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/NJH.0000000000000614" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000614</a>
Improved parent-child communication following a RCT evaluating a legacy intervention for children with advanced cancer
pediatric; palliative care; cancer; parent-child communication; parent-child relationship; father-child relationship; family relationships; web-based intervention
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. We examined the impact of a web-based legacy intervention on parent-child communication. Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of P<0.05. Intervention effects were measured using Cohen's d. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Clinical Trials Registry: Number NCT04059393. Copyright © 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Akard T F; Dietrich M S; Friedman D L; Gerhardt C A; Given B; Hendricks-Ferguson V; Hinds P S; Ridner S H; Beckmann N; Gilmer M J
Progress in Palliative Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/09699260.2020.1826778" target="_blank" rel="noreferrer noopener">10.1080/09699260.2020.1826778</a>