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OBJECTIVES: To examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully. DESIGN: A secondary data analysis of family caregiver data collected in the observational Dutch End of Life in Dementia (DEOLD) study between 2007 and 2010. SETTING AND PARTICIPANTS: Data were collected at 34 Dutch nursing homes (2799 beds) representing the nation. We included 252 reports from bereaved family members of nursing home residents with dementia. MEASURES: The primary outcome was dying peacefully, assessed by family members using an item from the Quality of Dying in Long-term Care instrument. Unpleasant experiences with end-of-life care were investigated using open-ended questions. Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory. Associations were investigated with multilevel linear regression analyses using generalized estimating equations. RESULTS: Families' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect. Neglect involved facing inaccessibility, disinterest, or discontinuity of relations, and negligence in tailored care and information. Lack of respect involved perceptions of being purposefully disregarded, an insensitive approach towards resident and family, noncompliance with agreements, and violations of privacy. Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully. Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making. CONCLUSIONS/IMPLICATIONS: Families' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death.
OBJECTIVES: To examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully. DESIGN: A secondary data analysis of family caregiver data collected in the observational Dutch End of Life in Dementia (DEOLD) study between 2007 and 2010. SETTING AND PARTICIPANTS: Data were collected at 34 Dutch nursing homes (2799 beds) representing the nation. We included 252 reports from bereaved family members of nursing home residents with dementia. MEASURES: The primary outcome was dying peacefully, assessed by family members using an item from the Quality of Dying in Long-term Care instrument. Unpleasant experiences with end-of-life care were investigated using open-ended questions. Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory. Associations were investigated with multilevel linear regression analyses using generalized estimating equations. RESULTS: Families' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect. Neglect involved facing inaccessibility, disinterest, or discontinuity of relations, and negligence in tailored care and information. Lack of respect involved perceptions of being purposefully disregarded, an insensitive approach towards resident and family, noncompliance with agreements, and violations of privacy. Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully. Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making. CONCLUSIONS/IMPLICATIONS: Families' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death.
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Detect language
French
Translate from
Detect language
All languages
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Albanian
Amharic
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Bosnian
Bulgarian
Catalan
Cebuano
Chichewa
Chinese (Simplified)
Chinese (Traditional)
Corsican
Croatian
Czech
Danish
Dhivehi
Dogri
Dutch
English
Esperanto
Estonian
Ewe
Filipino
Finnish
French
Frisian
Galician
Georgian
German
Greek
Guarani
Gujarati
Haitian Creole
Hausa
Hawaiian
Hebrew
Hindi
Hmong
Hungarian
Icelandic
Igbo
Ilocano
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Kazakh
Khmer
Kinyarwanda
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Korean
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Kurdish (Sorani)
Kyrgyz
Lao
Latin
Latvian
Lingala
Lithuanian
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Maithili
Malagasy
Malay
Malayalam
Maltese
Maori
Marathi
Meiteilon (Manipuri)
Mizo
Mongolian
Myanmar (Burmese)
Nepali
Norwegian
Odia (Oriya)
Oromo
Pashto
Persian
Polish
Portuguese
Punjabi
Quechua
Romanian
Russian
Samoan
Sanskrit
Scots Gaelic
Sepedi
Serbian
Sesotho
Shona
Sindhi
Sinhala
Slovak
Slovenian
Somali
Spanish
Sundanese
Swahili
Swedish
Tajik
Tamil
Tatar
Telugu
Thai
Tigrinya
Tsonga
Turkish
Turkmen
Twi
Ukrainian
Urdu
Uyghur
Uzbek
Vietnamese
Welsh
Xhosa
Yiddish
Yoruba
Zulu
Translate to
All languages
Afrikaans
Albanian
Amharic
Arabic
Armenian
Assamese
Aymara
Azerbaijani
Bambara
Basque
Belarusian
Bengali
Bhojpuri
Bosnian
Bulgarian
Catalan
Cebuano
Chichewa
Chinese (Simplified)
Chinese (Traditional)
Corsican
Croatian
Czech
Danish
Dhivehi
Dogri
Dutch
English
Esperanto
Estonian
Ewe
Filipino
Finnish
French
Frisian
Galician
Georgian
German
Greek
Guarani
Gujarati
Haitian Creole
Hausa
Hawaiian
Hebrew
Hindi
Hmong
Hungarian
Icelandic
Igbo
Ilocano
Indonesian
Irish
Italian
Japanese
Javanese
Kannada
Kazakh
Khmer
Kinyarwanda
Konkani
Korean
Krio
Kurdish (Kurmanji)
Kurdish (Sorani)
Kyrgyz
Lao
Latin
Latvian
Lingala
Lithuanian
Luganda
Luxembourgish
Macedonian
Maithili
Malagasy
Malay
Malayalam
Maltese
Maori
Marathi
Meiteilon (Manipuri)
Mizo
Mongolian
Myanmar (Burmese)
Nepali
Norwegian
Odia (Oriya)
Oromo
Pashto
Persian
Polish
Portuguese
Punjabi
Quechua
Romanian
Russian
Samoan
Sanskrit
Scots Gaelic
Sepedi
Serbian
Sesotho
Shona
Sindhi
Sinhala
Slovak
Slovenian
Somali
Spanish
Sundanese
Swahili
Swedish
Tajik
Tamil
Tatar
Telugu
Thai
Tigrinya
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Turkish
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Detect language
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Detect language
All languages
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Albanian
Amharic
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Catalan
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Chichewa
Chinese (Simplified)
Chinese (Traditional)
Corsican
Croatian
Czech
Danish
Dhivehi
Dogri
Dutch
English
Esperanto
Estonian
Ewe
Filipino
Finnish
French
Frisian
Galician
Georgian
German
Greek
Guarani
Gujarati
Haitian Creole
Hausa
Hawaiian
Hebrew
Hindi
Hmong
Hungarian
Icelandic
Igbo
Ilocano
Indonesian
Irish
Italian
Japanese
Javanese
Kannada
Kazakh
Khmer
Kinyarwanda
Konkani
Korean
Krio
Kurdish (Kurmanji)
Kurdish (Sorani)
Kyrgyz
Lao
Latin
Latvian
Lingala
Lithuanian
Luganda
Luxembourgish
Macedonian
Maithili
Malagasy
Malay
Malayalam
Maltese
Maori
Marathi
Meiteilon (Manipuri)
Mizo
Mongolian
Myanmar (Burmese)
Nepali
Norwegian
Odia (Oriya)
Oromo
Pashto
Persian
Polish
Portuguese
Punjabi
Quechua
Romanian
Russian
Samoan
Sanskrit
Scots Gaelic
Sepedi
Serbian
Sesotho
Shona
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Sinhala
Slovak
Slovenian
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Swahili
Swedish
Tajik
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Telugu
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All languages
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Albanian
Amharic
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Armenian
Assamese
Aymara
Azerbaijani
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Basque
Belarusian
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Bhojpuri
Bosnian
Bulgarian
Catalan
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Kyrgyz
Lao
Latin
Latvian
Lingala
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Luganda
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Malay
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Marathi
Meiteilon (Manipuri)
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Mongolian
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Nepali
Norwegian
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Sindhi
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Detect language
French
Translate from
Detect language
All languages
Afrikaans
Albanian
Amharic
Arabic
Armenian
Assamese
Aymara
Azerbaijani
Bambara
Basque
Belarusian
Bengali
Bhojpuri
Bosnian
Bulgarian
Catalan
Cebuano
Chichewa
Chinese (Simplified)
Chinese (Traditional)
Corsican
Croatian
Czech
Danish
Dhivehi
Dogri
Dutch
English
Esperanto
Estonian
Ewe
Filipino
Finnish
French
Frisian
Galician
Georgian
German
Greek
Guarani
Gujarati
Haitian Creole
Hausa
Hawaiian
Hebrew
Hindi
Hmong
Hungarian
Icelandic
Igbo
Ilocano
Indonesian
Irish
Italian
Japanese
Javanese
Kannada
Kazakh
Khmer
Kinyarwanda
Konkani
Korean
Krio
Kurdish (Kurmanji)
Kurdish (Sorani)
Kyrgyz
Lao
Latin
Latvian
Lingala
Lithuanian
Luganda
Luxembourgish
Macedonian
Maithili
Malagasy
Malay
Malayalam
Maltese
Maori
Marathi
Meiteilon (Manipuri)
Mizo
Mongolian
Myanmar (Burmese)
Nepali
Norwegian
Odia (Oriya)
Oromo
Pashto
Persian
Polish
Portuguese
Punjabi
Quechua
Romanian
Russian
Samoan
Sanskrit
Scots Gaelic
Sepedi
Serbian
Sesotho
Shona
Sindhi
Sinhala
Slovak
Slovenian
Somali
Spanish
Sundanese
Swahili
Swedish
Tajik
Tamil
Tatar
Telugu
Thai
Tigrinya
Tsonga
Turkish
Turkmen
Twi
Ukrainian
Urdu
Uyghur
Uzbek
Vietnamese
Welsh
Xhosa
Yiddish
Yoruba
Zulu
Translate to
All languages
Afrikaans
Albanian
Amharic
Arabic
Armenian
Assamese
Aymara
Azerbaijani
Bambara
Basque
Belarusian
Bengali
Bhojpuri
Bosnian
Bulgarian
Catalan
Cebuano
Chichewa
Chinese (Simplified)
Chinese (Traditional)
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Danish
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Esperanto
Estonian
Ewe
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French
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Greek
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Icelandic
Igbo
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Irish
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Japanese
Javanese
Kannada
Kazakh
Khmer
Kinyarwanda
Konkani
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Lao
Latin
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Malayalam
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