‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients

Aimee Victoria Aubeeluck; Heather Buchanan; Edward J. N. Stupple

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‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients

机译：“所有照料者的所有负担”：与亨廷顿氏病患者的家人一起探索生活质量

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Existing research suggests that family caregivers of persons with Huntington’s disease face a unique series of problems, linked to the complex nature of the disease. There is little research that explicitly investigates the impact of HD on the quality of life (QoL) of the family caregiver. The purpose of this study was to explore the quality of life issues for family carers of Huntington’s disease patients in a focus group setting.

机译：现有研究表明，亨廷顿氏病患者的家庭护理人员面临一系列独特的问题，这些问题与疾病的复杂性有关。很少有研究明确调查高清对家庭保姆的生活质量（QoL）的影响。这项研究的目的是在焦点小组中探讨亨廷顿氏病患者的家庭护理人员的生活质量问题。

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来源
《Quality of Life Research》 |2012年第8期|p.1425-1435|共11页
作者
Aimee Victoria Aubeeluck; Heather Buchanan; Edward J. N. Stupple;
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作者单位

University of Nottingham, Derby, Derbyshire;

University of Nottingham, Nottingham, Nottinghamshire;

University of Derby, Derby, Derbyshire;

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原文格式 PDF
正文语种 eng
中图分类
关键词
Huntington’s disease; Family caregiving; Carers; Quality of life; Well-being; Focus groups;

机译：亨廷顿氏病;家庭照料;看护者;生活质量;福祉;关注人群;

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专利

1. 'All the burden on all the carers': Exploring quality of life with family caregivers of Huntington's disease patients [J] . Quality of life research: An international journal of quality of life aspects of treatment, care and rehabilitation . 2012,第8期

机译：“所有照料者的所有负担”：与亨廷顿氏病患者的家人一起探索生活质量
2. Exploring the associations between spiritual well-being, burden, and quality of life in family caregivers of cancer patients [J] . Spatuzzi Roberta, Giulietti Maria Velia, Ricciuti Marcello, Palliative & supportive care . 2019,第3期

机译：探讨癌症患者的精神福祉，负担和生活质量的协会
3. Patient awareness of prognosis, patient-family caregiver congruence on the preferred place of death, and caregiving burden of families contribute to the quality of life for terminally ill cancer patients in Taiwan. [J] . Tang ST, Liu TW, Tsai CM, Psycho-Oncology: Journal of the Psychological Social and Behavioral Dimensions of Cancer . 2008,第12期

机译：患者的预后意识，患者家庭照顾者对首选死亡地点的理解以及家庭的照顾负担，都为台湾绝症癌症患者的生活质量做出了贡献。
4. Burdens and Quality of Life of Chronic Disease Patients' Family Caregivers: A Systematic Review [C] . Jum Natosba, Zulian Effendy, Firnaliza Rizona, Sriwijaya International Conference on Public Health . 2020

机译：慢性病患者家庭护理人员的负担和生活质量：系统审查
5. Spirituality, depression and caregiver burden among family caregivers of Alzheimer's disease patients. [D] . Park, Wanchae. 2006

机译：阿尔茨海默氏病患者的家庭护理人员的精神，沮丧和护理人员负担。
6. Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life [O] . Eliana Lourenço Borges, Juliana Franceschini, Luiza Helena Degani Costa, 2017

机译：家庭照顾者负担：根据癌症阶段和患者生活质量照顾肺癌患者的负担
7. Exploring caregiver burden experienced by family caregivers of patients with End-Stage Renal Disease in Nigeria [O] . Yemisi Okikiade Oyegbile, Petra Brysiewicz 2017

机译：探讨尼日利亚终末期肾病患者的家庭照顾者所经历的照顾者负担

‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients

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