||5R01CA236034-02 Interpret this number
||H. Lee Moffitt Cancer Ctr & Res Inst
||A Stepped-Care Psychosocial Intervention for Brain Tumor Family Caregivers
Primary malignant brain tumor is associated with a high risk of family caregiver burden, which can negatively
impact caregiver and patient well-being. Caregivers play an important role in caring for patients at home, but if
caregivers become too overwhelmed to care for the patient, patient health care utilization can increase. There
is strong evidence that high quality social support is a vital component to caregiver well-being, but barriers
exist to caregivers receiving informal and formal support and few interventions for this population. Our
objective is to address the caregiver social support gap by implementing a stepped-care intervention to
support informal family caregivers (FCGs). We use a blended approach of technology and personal contact to
leverage informal social support and connect caregivers to formal support services with the web-based
electronic Social Network Assessment Program (eSNAP) and a Caregiver Navigator. We hypothesize that by
intervening with the caregiver to address informal and formal support needs, we will improve caregiver and
patient well-being and reduce patient health care utilization. Our Specific Aims are to: 1) Determine the
efficacy of eSNAP + Caregiver Navigator support intervention on FCG well-being; 2) Determine the efficacy of
eSNAP + Caregiver Navigator on patient well-being and health care utilization; and 3) Identify key intervention
components using mixed methods to inform future intervention implementation. To achieve these aims, we
will conduct a prospective, longitudinal randomized controlled trial of the 8-week eSNAP + Caregiver Navigator
intervention. The intervention is targeted to family caregivers of patients with a primary diagnosis of malignant
brain cancer, but both caregivers and patients will participate in the study. Participants will be recruited at the
patient's first treatment planning appointment and randomly assigned to either the intervention condition or to a
waitlist control condition. Caregivers in the intervention condition will receive access to eSNAP, a web-based
app to help caregivers catalogue and visualize informal social network resources. eSNAP also provides a basic
resource list. eSNAP will alert a trained Caregiver Navigator to contact participants who demonstrate a lack of
support. The Caregiver Navigator will problem-solve with caregivers and make arrangements/referrals in
ongoing phone consultations. The Caregiver Navigator's goal is to help caregivers identify and utilize informal
and formal sources of support to place caregivers on a successful trajectory of support. Questionnaires will be
collected from all participants at enrollment and 8 weeks, coinciding with patient clinic visits. Caregivers will
also complete questionnaires at 4 weeks and a short debriefing interview at 8 weeks. Waitlist participants may
then receive the intervention and will be asked to complete questionnaires mirroring intervention participants.
Follow-up data will be collected at 6 months and 1 year. The proposed intervention supports caregivers to
improve well-being and optimize health care utilization in the dyad, while also providing important foundational
work in understudied FCGs and patients with primary malignant brain tumor.
A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor.
, Ketcher D.
, McCormick R.
, Barrios-Monroy V.
, Sutton S.K.
, Zebrack B.
, Wells K.J.
, Sahebjam S.
, Forsyth P.
, Byrne M.M.
BMC health services research, 2021-04-17; 21(1), p. 360.