Abstract
ABSTRACT Purpose: In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients. Methods: Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory. Results: Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative’s safety net. A percieved inability to improve their loved one’s well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death. Conclusions: By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient’s experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.
Highlights
Since more people survive cancer and more live longer with a chronic disease (Siegel, Miller, & Jemal, 2019) there is an increase in family members living with cancer
Members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment
Members to cancer patients described a situation where guilt and problems in healthcare put demands on them to be alert at all times
Summary
Since more people survive cancer and more live longer with a chronic disease (Siegel, Miller, & Jemal, 2019) there is an increase in family members living with cancer. Spouse caregivers show morbidity connected to high levels of stress, anxiety, potential burnout, depressive symptoms, marital distress, poor health, and unmet needs (Braun, Mikulincer, Rydall, Walsh, & Rodin, 2007; Goren, Gilloteau, Lees, & DiBonaventura, 2014; Lehto, Aromaa, & Tammela, 2018; Li & Loke, 2013; Sandén, 2017; Sjövall, 2011). Cancer is an illness that often requires family members to engage. Cancer is on the increase and in Sweden we struggle with providing psychosocial support to both patients and family members. In order to be able to provide support to affected families, there is a general need to increase and adapt family support to this emerging situation of a slowly less fatal disease
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