Cancer, a relational disease

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.

What Do Patients and Their Carers Do to Support the Safety of Cancer Treatment and Care? A Scoping Review

“…26,30,31 One study also incorporated unstructured interviews into its methodology. 29 Of these studies, five conducted longitudinal interviews. 21,22,26,27,31 In addition, ethnographic methods were used including direct observations (n = 5), 4,25,26,30,31 video recordings (n = 1), 25 and document analysis (n = 1).…”

“…21,27,29 Some stressed their role as essential to patient survival. 29 Carers spoke of questioning staff and arranging enrollment in clinical tri-als. 27 In Ethiopia, diagnoses were often not disclosed to patients to avoid upset; their families took over decision making.…”

Patterns of Patient and Caregiver Mutual Support Connections in an Online Health Community

“…Our recommendation echoes calls to connect caregiver family members of cancer patients with others in a similar position [91]. • Network features.…”

“…In this work, however, we focus on supportive connections and the target of online interactions by health role. OHCs may provide a particular opportunity for caregivers seeking support online [20], as patients are given "interpretive precedence" in dealing with a health condition, leaving caregivers without supportive relationships to understand their own role in a broader health journey [91]. When caregivers can communicate with other caregivers digitally, they develop more effective coping strategies for caregiving stress [76].…”

“…Second, our results show that patients are particularly receptive to interactions from other authors and that caregivers are less affected by receiving an interaction. Caregivers may be less likely to view themselves as the relevant recipient of the message [7,91] or may view reciprocation as an inappropriate articulation of personal concerns and challenges [17]. In general, the appropriative use of CB for peer communication rather than health blogging presents opportunities to meet unmet needs.…”