Sandén Ulrika, Nilsson Fredrik, Thulesius Hans, Hägglund Maria, Harrysson Lars
a Department of Design sciences , Lund University , Lund , Sweden.
b Research and Development Kronoberg and Linnaeus University , Växjö , Sweden.
Int J Qual Stud Health Well-being. 2019 Dec;14(1):1622354. doi: 10.1080/17482631.2019.1622354.
: 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. : 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. : 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. : 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.
在这项定性访谈研究中,我们调查了癌症患者家属的经历。我们的目标是探索并区分他们与癌症患者需求的差异。对瑞典17位癌症患者家属进行了5次焦点小组访谈和6次个人叙事访谈,并与19次癌症患者访谈进行了比较。我们的分析受到经典扎根理论的启发。癌症患者家属表示,由于与癌症患者持续比较,自己出现了与高压力水平相关的病症,且难以认识到自身压力。家属陷入了一种类似瞬间恐惧的情境,成为患病亲属的安全网。感觉无法改善所爱之人的健康状况导致了内疚感。渴望一切结束却又因结局可能是死亡而充满羞耻感。通过认识到癌症是一种侵袭身体和人际关系的疾病,家属的挣扎被置于优先地位,与患者的经历区分开来。我们界定了癌症患者与家属需求的差异。癌症患者家属在制定减轻压力、增强安全感和获得满足感的平衡策略方面可以得到支持。