Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization

Abstract

Informal caregivers are key to oncology care, but often have unmet needs, leading to poor psychological and physical health outcomes. Comprehensive, proactive caregiver support programs are needed. We describe the development of a support intervention for caregivers of persons with brain tumors. The intervention uses a caregiver navigator to help participants identify and capitalize on existing social support resources captured using a web-based tool (eSNAP) and connects participants to existing formal services. We describe the iterative development process of the manualized intervention with particular focus on the caregiver navigator sessions. The process included review of the literature and published patient navigation programs, expert and stakeholder review, and study team member review. Quantitative and qualitative data were captured from the first 15 participants randomized to receive the intervention, enrolled from February 2020 to December 2020. Four participants dropped from the study, 9 completed at least 7 modules, and 8 participants completed all 8. Quantitative and qualitative data were collected primarily from those who completed the intervention; data suggest caregivers were satisfied with the intervention and found it helpful. Our intervention is one of the first theory-based caregiver support interventions to include caregiver navigation in neuro-oncology. We use best-practice guidelines for design, including extensive stakeholder feedback. COVID-19 may have impacted recruitment and participation, but some preliminary data suggest that those able to engage with the intervention find it helpful. Data collection is ongoing in a larger trial. If effective, caregiver navigation could be a model for future interventions to ensure caregiver support.

Patient navigation across the cancer care continuum: An overview of systematic reviews and emerging literature

“…Across these studies, five reported using technology other than email or telephone calls. This included Google Hangouts and WhatsApp, 95 an online patient navigation tool, 96 social media and phone applications, 97 Zoom, 98 and web‐based tool and video conferencing 99 . Four implementation and feasibility studies were also included 95,100–102 .…”

“…Three primary studies included information on digital health. One study found that using caregiver navigators in combination with web‐based tools could connect participants to existing social support services, resulting in valued discussions with patients 99 . Another study indicated that using an online patient navigator tool to complement the information provided during a consultation with a health care provider resulted in increased patient satisfaction, with lower reported anxiety levels 96 .…”

“…Three studies focused on patient navigation concerning caregivers. Caregivers from one study reported that their use of an online navigation tool was helpful, and they were satisfied, appreciating having someone focused on their unique needs 99 . Another study found improvements in anxiety and depression in caregivers and patients who received navigation through telehealth 121 .…”

“…One study found that using caregiver navigators in combination with webbased tools could connect participants to existing social support services, resulting in valued discussions with patients. 99 Another study indicated that using an online patient navigator tool to complement the information provided during a consultation with a health care provider resulted in increased patient satisfaction, with lower reported anxiety levels. 96 Finally, a study on navigation delivered by telemedicine (with the mode of delivery depending on patient preference) was identified as feasible and useful in a resource-limited setting.…”

Family Caregiving for People with Cancer and Other Serious Illnesses

“…As an example, her institution has enCompass Carolina, a navigator-assisted program targeted to rural cancer caregivers and designed to identify social support needs and connect them to people and resources. It is an adaptation of the electronic social network assessment program (Reblin et al, 2018(Reblin et al, , 2022. In a project designed to iteratively adapt this intervention, Kent and her colleagues are partnering with rural caregivers and clinicians to make sure it is appropriate, acceptable, and feasible to deploy in a rural context.…”