Caregiving burden in head and neck cancer.

Abstract

Background: Head and neck cancer (HNC) presents family caregivers (FCs) with enormous challenges, yet this population remains understudied. Caregiving tasks include general tasks (e.g., providing emotional support and managing symptoms) and HNC-specific tasks (e.g., tube feeding and tracheostomy care). HNC caregiving is complex because FCs provide care in the context of functional changes unique to HNC cancer, such as speech and swallowing difficulties that affect communication and lifestyle. We are developing and testing the HNC Caregiving Task Inventory (HNC-CTI) to assess HNC caregiving burden. Herein we report descriptive results on frequently performed tasks and difficulty with task performance. Methods: Eligibility criteria included primary FCs of patients with HNC during and within 12 months of completing treatment. 56 FCs completed the HNC-CTI which includes 108 items in 11 domains. Questions are directed at the frequency and difficulty of specific caregiving tasks. Moderate to severe difficulty is defined as ≥ 3 (0-5 Scale). Results: FC characteristics: 80% female, 86% spouses, 29% ≥ 65 years old, 50% ≤ high school education. Results are reported as % who endorsed performing the specific task (% reporting moderate-severe difficulty): managing anxiety 60.7 (52.9), maintaining calories 76.8 (44.2), managing phlegm 35.7 (40), encouraging normal activities 83.6 (39.1), providing emotional support 90.9 (38.8), preparing foods 78.9 (37.7), helping to make medical decisions 82.1 (37.0), monitoring mental status 58.9 (33.4), communicating with insurers 58.9 (33.3), aiding mobility 26.8 (33.3), managing fatigue 60.7 (29.4), assisting with finances 73.2 (29.3), monitoring swallowing 75.0 (28.5), managing constipation 57.1 (28.1), knowing when to call doctor 85.7 (27.1), managing pain 66.1 (27.0), helping with medications 85.7 (22.9), tracheostomy care (n=11) 54.5 (16.7), managing PEG problems 52 (15.4), and ensuring safety 83.6 (4.6). Conclusions: HNC FCs engage in a vast range of caregiving tasks. Task burden was high overall. Some tasks were particularly difficult for FCs. Among the 11 domains, none dominated as a specific area for targeting intervention. Interventions for caregivers will likely need to be broad in scope.