The extra burdens patients in denial impose on their family caregivers

The purpose of this study was to explore the impact of advanced cancer patients' denial on their family caregivers and how they cope, in order to enable clinicians to better support them and their caregiving.

As the objective was to obtain clinically useful findings, an interpretive descriptive design was used. Data consisted of prospective semi-structured interviews with 16 family caregivers of advanced cancer patients in denial, field notes, reflexive journals, and memos during the analysis.

Caregivers experienced extra burdens with the patient's denial. Feeling bound to preserve the denial, which they perceived as immutable, they were prevented from seeking information to manage the patient's care. Additionally, those caring for noncompliant patients felt disenfranchised from their role, resulting in feelings of powerlessness and guilt, and felt burdened by managing medical situations that arose from noncompliance. Caregivers described the ambivalence of feeling frustrated and burdened by the denial while recognizing it as a long-standing coping pattern for the patient. The denial prevented them from acknowledging their own needs to the patients or seeking informal support. They therefore developed solitary coping strategies, sought professional psychosocial support, and/or employed denial themselves.

Caregivers of patients in denial experience added burdens, which they must bear without most of the usual sources of support. The burden is accentuated when patients are noncompliant with care, placing themselves in dangerous situations. Healthcare providers should identify patients in denial and support their caregivers in meeting both their caregiving and their own needs. Evidence-based strategies to accomplish this should be developed and implemented.