METHODS: During semi-structured interviews with glioma patients and focus group meetings (FGMs) with family carers of deceased patients, participants rated the importance of a set of pre-specified intervention topics, shared their experience, and suggested additional topics. Interviews and FGMs were audio-recorded, transcribed, coded, and analyzed (framework and content analysis).
RESULTS: We held 20 interviews and five FGMs (28 carers). Both parties considered the pre-specified topics as important, chiefly information/communication, psychological support, symptoms management, and rehabilitation. Patients aired the impact of focal neurological and cognitive deficits. Carers reported difficulties in dealing with patient\'s behavior and personality changes and appreciated the preservation of patient\'s functioning via rehabilitation. Both affirmed the importance of a dedicated healthcare path and patient\'s involvement in the decision-making process. Carers expressed the need to be educated and supported in their caregiving role.
CONCLUSIONS: Interviews and FGMs were well informative and emotionally challenging. Both parties confirmed the importance of the pre-specified topics, and carers suggested one additional topic: education/support to caregivers. Our findings strengthen the importance of a comprehensive care approach and of addressing the needs of both patients and their family carers.
方法:在对神经胶质瘤患者的半结构化访谈和与已故患者的家庭照顾者的焦点小组会议(FGM)期间,
结果:我们进行了20次访谈和5次FGM(28名护理人员)。
结论:访谈和FGM提供了很好的信息和情感挑战。