Cancer as Communal: Understanding Communication and Relationships from the Perspectives of Survivors, Family Caregivers, and Health Care Providers

ABSTRACT

With cancer increasing in prevalence and high priorities placed on concurrent oncological and palliative care to help meet the familial, spiritual, and individual needs of stakeholders in cancer, research is needed that assesses the factors that facilitate coping across stakeholders in cancer care. We were interested in synthesizing our understanding of communication and relationships among patients, caregivers, and providers based on the reasoning that illness is relational, but often conceptualized and researched from the individual perspectives of various stakeholders. The current study examined the experiences of relational and communication opportunities and challenges during cancer for current and former family caregivers, cancer survivors, and palliative and oncology health care practitioners. The thematic analysis of 30 semi-structured interviews revealed an overarching theme on the benefits of orienting toward cancer as communal, which was, in turn, facilitated or impeded by four additional themes/sets of behaviors: support, presence, perspective-taking, and reframing hope. Results of a cross-case data matrix analysis reveal that stakeholders in different roles experience qualitative differences in their experience of cancer as communal, isolated, or ambivalent. Implications for education, palliative care, and interventions are discussed.

Acknowledgments

The authors would like to thank the patients, family members, and health care practitioners who selflessly shared their stories on the opportunities and challenges of communicating in the context of cancer. We would also like to thank the editor and anonymous reviewers for their invaluable feedback.

Notes

1. None of the participants were paired, however, we did interview two family members who had provided care for the same patient. These were very different vantage points as one was a husband and one was a son of a woman who died of breast cancer.

2. Nine patients with cancer were in or had been in stage IV cancer (38%), nine patients with cancer were in remission (38%), three had been in stage II cancer (13%), two were in stage III cancer (8%), and one patient with cancer reported being in stage I (4%).

3. The two graduate students have since graduated and one of the faculty members has retired from her faculty position.

Additional information

Funding

This project was supported, in part, by an Enhancing Research Excellence Grant from the College of Arts and Sciences at the University of Nebraska-Lincoln and a Revisions Award from the Office of Research and Economic Development at the University of Nebraska- Lincoln.