Advancing Education, Research, and Quality of Care for the Head and Neck oncology patient.
Background: Increased head and neck cancer (HNC) family caregiver distress is associated with higher rates of mortality and worse quality of life for HNC patients. HNC family caregivers report an urgent need for technology-based, easily accessible support and education for management of HNC patient medical equipment (e.g., feeding tubes, tracheostomies) and symptoms (dysphagia, dry mouth). However, there are few existing interventions supporting HNC family caregivers, and little is understood about which components of these current interventions are successful.
Purpose: To define the characteristics (e.g., delivery platform, content, outcomes, timing) of existing, technology-based interventions available for family caregivers of HNC patients.
Methods: We conducted a scoping review to characterize and identify gaps for existing, evidence-based, technology interventions available for the family caregivers of HNC patients. We worked with a medical librarian to develop tailored search strategies for PubMed, Scopus, Web of Science, PyschInfo and CINAHL databases between Oct 2023-Jan 2024. Our approach was guided by Arksey and O’Malley’s scoping review framework, and the Preferred Reporting Items for Systematic reviews and meta-analyses extension for Scoping Reviews (PRISMA-ScR). Studies were eligible for inclusion if they were peer-reviewed, original research available in English, and had a technology-based intervention being used by the family caregivers. Studies were excluded if they required live, interactive virtual delivery by a lay or licensed healthcare provider. Two reviewers then used a pre-determined data extraction form to characterize HNC family caregiver intervention components.
Results: A total of 7 studies met eligibility criteria. Of studies that reported relevant demographic characteristics, caregivers were found to be predominantly women (63%), Caucasian (88%), and the spouse/partner of the HNC patient (51%). Delivery platforms included web-based applications (n=3), interactive sessions (n=4), and prerecorded DVD’s (n=1). Some of these interventions had a multimodal approach of both non-technology and technology-based interventions (n=3). Intervention content included educational videos/modules (n=4), virtual yoga sessions (n=1), screening questionnaires (n=1), and simulation training exercises (n=3). Interventions were timed to be available 24/7 (n=4) and at scheduled visits (n=4). Targeted intervention outcomes were improvement in patient and caregiver quality of life (n=3) and reduction in caregiver distress (n=4).
Conclusions: Technology-based interventions for HNC family caregivers varied significantly in delivery platform, content, and timing. Most interventions target family caregiver and patient psychosocial outcomes. However, these interventions have not been inclusive for marginalized HNC family caregivers. This disparity may be due in part to systemic inequities in broadband access for underserved communities. Moving forward, culturally tailored interventions and community partnerships with broadband hubs such as local libraries may be used to increase access and utilization of supportive interventions for HNC family caregivers. Clinicians can increase accessibility of these interventions for marginalized HNC family caregivers by assessing potential barriers to utilization. Caregivers play a crucial role in supporting HNC patients, and equipping them with accessible resources, practical guidance, and emotional support throughout the treatment process and into survivorship can significantly improve patient outcomes.