• Managing Change: The Process of Caregiving for Informal Caregivers of Head and Neck Cancer Patients

      Edmonds, Maura Fulham; McGuire, Deborah B. (2013)
      Purpose: The goal of this study was to gain a better understanding of the process undertaken by the informal caregivers of head and neck cancer (HNC), with an eye toward theory development. Although the development of a theory was beyond the scope of this project, it was meant to be a first step toward understanding the important categories and concepts that are part of this process. Methods: This study used grounded theory methods and was conducted at a large urban National Cancer Institute (NCI)-designated cancer center in the Mid-Atlantic region of the US. Constant comparative analysis and theoretical sampling were used to gather and analyze data from six caregivers of HNC patients. Audio-recorded and transcribed, de-identified raw data were analyzed using Atlas ti Software<sup>TM</sup>. Results: The caregiving process was described in terms that yielded a core category and two other categories. Subcategories were identified as well as dimensions of some of the subcategories. The core category was entitled Managing Change and the two other categories were entitled Types of Change and Strategies for Managing Change. Types of Change encompassed the subcategories of Changes in Life Patterns, Witnessing Physical Changes, Relationship Changes, and Increased Uncertainty. Strategies for Managing Change included the subcategories of Controlling Life Pattern Changes, Utilizing the Quality of the Relationship, and Managing Stress. Key findings included the identification of many different types of change, variation in types and amounts of change over time, utilization of quality of the relationship between patient and caregiver as an important strategy for caregivers, and caregivers' use of a variety of strategies to manage change. Conclusions: This study has attempted to broaden the understanding of the role of a caregiver of a patient with HNC using grounded theory methods. This work is the first step in developing a theory of caregiving related to this population which may also be applied to a broader population of caregivers.