JMIR Publications

ABSTRACT

Background:

Head and neck cancer (HNC) survivors face challenging treatment consequences that can lead to severe disruptions in swallowing and result in weight loss, malnutrition and feeding tube dependence. HNC caregivers (family/friends who provide support) therefore often encounter distressing nutritional caregiving burdens and feel unprepared to provide adequate support at home.

Objective:

The purpose of this mixed methods study was to develop a mobile support application to support head and neck cancer caregiving with an emphasis on nutritional support following treatment.

Methods:

We assessed perspectives on nutritional recovery challenges and mobile support application preferences in: 1) oncology dietitians using a cross-sectional survey and 2) HNC survivors and caregivers using dyadic semi-structured interviews. Descriptive statistics for survey data were synthesized with content analysis of interview data to characterize nutrition-related perceptions and intervention preferences; results were used to guide content development of a mobile application for caregivers.

Results:

Surveys were completed by a national panel of oncology dietitians (N=116; 100% female, 50% >10 years practice experience). Interviews included HNC survivors completing treatment within the past 24 months (N=15, 80% male, 40% oropharynx cancer) and their caregivers (N=13, 80% female, 73% spouse). Dietitians, survivors and caregivers perceived that the majority of nutritional concerns assessed (e.g., swallowing, feeding tube management, weight maintenance, caregiver distress about nutrition) were very or extremely important to caregiving in the six months following treatment conclusion. The caregiving tasks rated highest in importance by dietitians included tracking nutritional concerns (97%), working together as a team on nutritional concerns (89%) making care decisions (88%) and tracking intake (83%). Five themes emerged from dyadic interviews, including: types of nutritional challenges faced, that competing symptoms were difficult to separate from nutritional challenges, the emotional challenges related to nutrition and recovery, the diverse set of medical and support tasks taken on by caregivers and information and resource needs in caregivers. Survey and interview results were synthesized to guide content of the Healthy Eating and Recovery Together (HEART) App, including an intake tracker and sections for nutrition recovery support, other competing caregiving tips, peer support and caregiver self-care.

Conclusions:

Results pinpointed optimal content for a mobile application for HNC caregivers and support the acceptability of implementing the HEART App following HNC treatment. Clinical Trial: N/A