Family Members' Experiences Caring for Patients With Advanced Head and Neck Cancer Receiving Tube Feeding: A Descriptive Phenomenological Study

Abstract Context Head and neck cancer patients with dysphagia frequently require tube feeding. Family members are often involved in caring for such patients but feel ill prepared to do so. Health professionals are in a key position to support family members who undertake caregiving responsibilities. The ability to provide support requires that the experiences of family caregivers (FCs) are well understood; however, few studies examining these experiences have been conducted. To address this gap, research is needed that examines and describes the caregiving experience from the perspective of family members themselves. Such work will provide an empirical base to guide health professionals' practice with FCs. Objectives To explicate the lived experience of caring for a dysphagic relative with advanced head and neck cancer receiving tube feeding. Methods A descriptive phenomenological approach was used. Six FCs participated in two in-depth interviews each. Spiegelberg's three-step approach guided data analysis. Results The essence of FCs' experience was “negotiating a new normal” and includes the themes of 1) negotiating changing roles, 2) negotiating an altered lifestyle, 3) negotiating ways of coping, and 4) negotiating the meaning of the feeding tube. Themes 1 and 2 are reported on here. Conclusion FCs experience significant challenges. Study findings provide direction for health professionals who work with FCs and underscore the need for future research geared toward developing and testing psychoeducational interventions aimed at supporting FCs in the important and difficult caregiving work they do.