Palliative Care Research Cooperative Group (PCRC): Refinement and Expansion Grant uri icon

abstract

  • Parental bereavement has negative consequences for parental health. Despite bereavement being a quality domain in pediatric palliative care, effective interventions mitigating health consequences remains a critical gap. We therefore propose a multi-modal, ecological momentary (EM), web-based, self-management intervention, ADAPT, targeting bereaved parents. which is a quality domain of pediatric palliative care. Our intervention, ADAPT, is multi-modal to promote a targeted approach to individual parental bereavement experiences and is not time or geographically limited. ADAPT is based on the theoretical foundations of the Adaptive Leadership (AL) framework that highlights the use of an individual's adaptive ability to address his or her challenges. Because evidence supports the efficacy of digital health interventions in influencing positive health behaviors, our interdisciplinary team developed a web-based, multi-modal intervention, labeled ADAPT, that incorporates varied self-management strategies including: A: Asking for assistance (option to connect with child's healthcare team or providers, such as a grief counselor); DA: Developing Adaptive ability (self-management tools: e.g. stress reduction, legacy building); P: Accessing Pertinent online resources (grief support networks/websites); and T: Tracking one's health (self-administered surveys for grief, sleep, anxiety, and depression). Parents can download ADAPT on any digital device (phones/computers) using a Quick Response (QR) bar code or weblink. They will create a unique ID to log in and access ADAPT. All HIPAA-related concerns are addressed by the information technology (IT) team.

date/time interval

  • July 2020 - June 2021

contributor