Patient and caregiver goals for dementia care.
Patient and caregiver goals for dementia care.
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DOI：
10.1007/s11136-016-1471-7
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发表时间：
2017-03
期刊：
影响因子：
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通讯作者：
Reuben DB
中科院分区：
文献类型：
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作者：
Jennings LA;Palimaru A;Corona MG;Cagigas XE;Ramirez KD;Zhao T;Hays RD;Wenger NS;Reuben DB
大多数慢性病的健康结果测量没有纳入患者和护理人员的具体健康目标。为了引出以患者为中心的痴呆症护理目标，我们对早期痴呆症患者和痴呆症护理人员进行了一项定性研究。我们进行了5个焦点小组，共有43名参与者（7名早期痴呆患者和36名护理人员）；15名参与者说西班牙语。两名编码器使用演绎和归纳方法对逐字转录进行逐行独立分析。编码文本被分成不同的领域，并发展成为痴呆症护理的目标清单。参与者在五个领域（医疗、身体生活质量、社会和情感生活质量、获得服务和支持以及护理人员支持）确定了41个痴呆症护理目标。护理人员的目标包括确保痴呆症患者的安全以及管理护理压力。患有早期痴呆症的参与者认为，参与有意义的活动（例如，工作、家庭活动）以及在生命末期不成为家庭的负担是重要的目标。参与者明确表示，随着疾病的进展，有必要重新制定目标，并报告了当痴呆症患者和护理人员的目标不同时（例如，患者安全与在家独立生活），目标设定面临挑战。虽然说英语和西班牙语的参与者的目标相似，但说西班牙语的参与者强调有必要改善痴呆症的社区教育。患者和护理人员确定的护理目标与通常衡量的痴呆症健康结果不同。未来的工作应将以患者为中心的目标纳入临床设置，并评估其对痴呆症护理的有用性。
Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers. We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care. Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia. Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.