Home Caring for Spouses With Terminal Cancer in the Last Stages of Their Illness: A Phenomenological Study of Middle-Aged Caregivers

This phenomenological study explored the lived experiences of middle-aged spouses who cared for their partners when their cancer diagnosis was termed terminal. The purpose was to obtain firsthand descriptions of personal lived experiences from the spouses, focusing on the perceived meaning these experiences held for them, as well as the impact of caregiving and the reported unmet needs, challenges, and coping strategies from the caregivers’ perspective. Semi-structured interviews, field notes, and observations were used to collect data from participants, and findings were analyzed using Parse’s human becoming theory. The findings revealed that caring for a terminally ill spouse with cancer is a very complex task, full of paradoxes. The experience can be satisfying and rewarding or completely frustrating. While caregivers initially experienced feelings of crushing uncertainty and saw caregiving as an emotional rollercoaster or life thrown into turmoil, they also experienced acceptance of lifestyle changes as they transitioned through the diagnosis of their ill spouses. Letting-go and gaining knowledge and information were identified as the key coping mechanisms that deemed helpful to caregivers. As the caregivers’ needs for information and knowledge were met, there was a decrease in the negative aspects of caregiving, and caregivers were more inclined to see their experience as a gain, despite all the personal hardship involved in the process. The implications from this study suggest that professionals who are in a position of assisting families should be aware of the phases of caregiving development so that culturally and spiritually sensitive interventions can be designed to address individual needs they change along a patient’s illness trajectory