Survivor loneliness of women following breast cancer

Abstract

Purpose/objectives: To describe the experience of loneliness for women more than a year following breast cancer treatment.

Research approach: Qualitative, phenomenologic.

Setting: Interviews conducted in women's setting of choice (e.g., home, library).

Participants: Purposive sample of 13 women, 1-18 years following breast cancer treatment.

Methodologic approach: Streubert's descriptive phenomenologic method based on Husserl's phenomenology.

Main research variables: Phenomenon of loneliness.

Findings: Women conveyed a unique description of loneliness that was termed survivor loneliness. They described how they felt alone in the awareness of mortality and were invalidated in the experience of ongoing symptom burden, a changed sense of identity and connection, and an altered threshold for distress that pervaded their long-term experiences. As they sought ways to lead more authentic lives, the women sometimes withheld truth or projected images they perceived as inauthentic, contributing to their loneliness. Paradoxically, as survivors perceived connections with others as more fragile, they also felt a strengthened vitality of connection, particularly with their children, and a deepened sense of empathy and connectedness to the suffering of others.

Conclusions: Findings shed light on the ongoing symptom experience of women and the isolation they experienced as they sought to work through an altered sense of self, connection, and identity as breast cancer survivors. Although survivor loneliness was experienced by all participants, findings suggest that some women may be more vulnerable to heightened psychological distress. Follow-up care should include giving recognition to survivors' experiences and normalizing the situation to allow for survivors' expressions of experience.

Interpretation: Through attentive and empathic assessment, clinicians need to be alert to the unmet needs of longer-term survivors, including the experience of survivor loneliness and the importance of identifying and assisting survivors who describe heightened distress. Prospective studies are needed to examine survivor loneliness and the factors that make some women more vulnerable to psychological distress. Grounded theory studies are needed to delineate the phases and challenges of breast cancer survivorship, including survivor loneliness.