This K99/R00 application describes the background and experience of the applicant, J. Nicholas Dionne- Odom, PhD, RN, and his plan to acquire the knowledge and training necessary to become a leading independent clinical investigator in developing and testing telehealth palliative care interventions that optimize the outcomes of rural family caregivers (FCGs) of persons with advanced cancer. The overall goal during the K99 phase is to gain advanced research training in developing interventions, conducting randomized controlled trials (RCTs), and health coaching/motivational interviewing in order to develop and test a telehealth program for rural FCGs of persons with advanced cancer living in the Southern US. Based on Pearlin's Model of Family Caregiving, the goal of this new intervention will be to promote FCGs' self-efficacy, competence, and decision- making skills by coaching them about how to manage not only the care demands and needs of their care recipients but also their own needs. The specific training objectives during the K99 phase are to: (1) develop and tailor interventions, to: 1a) gain advanced understanding of community engagement in research using mixed methods; 1b) develop advanced understanding and skills in developing, manualizing, and assessing fidelity of an intervention; 1c) gain greater understanding of cutting edge telehealth and other m-health developments; and 1d) develop greater understanding of spiritually- and faith-based-oriented interventions; (2) develop skills to design and lead RCTs relevant to family caregiving; 3) augment knowledge and skills in health coaching; and (4) continue training in research ethics. The research specific aim during the K99 phase is: through interviews with a) rural dwelling persons with advanced cancer, b) their primary FCGs, and c) lay healthcare navigators, develop and tailor the content, format and delivery of a telehealth intervention for FCGs of persons with advanced cancer in the rural South. To meet the K99 training objectives, a comprehensive training plan has been developed in concert with an interdisciplinary mentorship and consultant team of senior research experts. The plan includes intensive one-on-one mentorship, formal coursework/workshops, clinical trial research observerships, and conference attendance. The overall goal during the R00 phase is to conduct a pilot RCT with 60 rural Southern advanced cancer FCGs to assess acceptability, feasibility, and potential efficacy of the newly tailored FCG intervention resulting from the K99 phase. The research specific aims during the R00 phase are to: 1) evaluate the acceptability of a newly tailored FCG intervention and the feasibility of enrolling and retaining 60 participants into a RCT of the FCG intervention for 24 weeks and 2) evaluate the efficacy of the intervention in improving caregiver outcomes (quality of life, burden, and mood [depression/anxiety]) compared to usual care. The results will directly support an R-01 application to conduct an efficacy RCT of an early, telehealth PC intervention for rural Southern FCGs of advanced cancer patients.
The burden placed on family caregivers and the toll on their mental and physical health have never been greater and will continue to rise; by 2020 the number of individuals with cancer is expected to swell by 31% from 13 million to over 18 million and the number of individuals with cancer who are in their last year of life is expected to increase from 901,000 to 1,217,000. Healthcare clinicians should be concerned with the health of family caregivers for their own sake (e.g. preventing future family caregiver morbidity), but also because these caregivers deliver 80% of the home care to community-dwelling patients with advanced illness. Replacing these services with paid professional help would be economically unfeasible as caregiving services have been valued at $450 billion; thus it is imperative that interventions be developed that keep FCGs healthy and functioning, not only for their own sake, but also so they can provide the best care possible to patients with cancer.
