Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes

Goodman, Claire; Amador, Sarah; Elmore, Natasha; Machen, Ina; Mathie, Elspeth

doi:10.1016/j.ijnurstu.2013.06.008

Cited by 75 publications

(107 citation statements)

References 24 publications

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“…It is worth noting the finding that when properly approached, many residents with cognitive impairments were able to express their preferences consistently. This finding was consistent with other studies32,33 and highlighted the need to not exclude these residents a priori from ACP.…”

Section: Discussionsupporting

confidence: 92%

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

Mignani

Ingravallo

Mariani

et al. 2017

CIA

114

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ObjectiveWe aimed to search and synthesize qualitative studies exploring the perspectives of older people living in long-term care facilities and of their family members about advance care planning (ACP) discussions.MethodsThe enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework was used to guide the review and report its results. PubMed, CINAHL, and PsycINFO were searched for studies published between January 2000 and November 2015. All included studies were assessed for comprehensiveness of reporting, and a thematic synthesis of their results was performed.ResultsThe nine included studies differed in terms of qualitative method used, comprehensiveness of reporting, and geographical origin. The thematic synthesis led to the identification of four main themes: 1) plans already made; 2) end-of-life care and decision-making; 3) opinions and attitudes toward ACP; and 4) how, when, about what, and with whom to do ACP.ConclusionDespite their willingness to be involved in a shared decision-making process, older residents and their families still have little experience with ACP.Practical implicationsIn view of implementing ACP for elders living in long-term care facilities, it would be important to rethink ACP and also to incorporate their nonmedical preferences, according to their own priorities.

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Section: Discussionsupporting

confidence: 92%

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

Mignani

Ingravallo

Mariani

et al. 2017

CIA

114

View full text Add to dashboard Cite

show abstract

“…Older people, especially those with cognitive impairment, may choose to cede control or may not wish to consider preferences overtly. Others may be cognitively unable to express preferences . In this situation, the importance of the care context and family support grows .…”

Section: Discussionmentioning

confidence: 99%

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis

Etkind

Bone

Lovell

et al. 2018

J American Geriatrics Society

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ObjectivesTo determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research.DesignSystematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken.SettingHospital and community care settings.ParticipantsOlder adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164).MeasurementsThe QualSys criteria were used to assess study quality.ResultsOf 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading‐off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences.ConclusionFamily is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care.

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“…, Goodman et al . ), there are limited quantitative studies on this topic (Schiff et al . , Tobler et al .…”

Section: Introductionmentioning

confidence: 99%

Willingness to complete advance directives among low-income older adults living in the USA

Lee

Hong

2015

Health Soc Care Community

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This study explored low-income older adults' willingness to (i) complete advance directives, legal documents, whereby an individual designates decision-makers in the event that they cannot make their own decisions about end-of-life treatment preferences, and (ii) the role of social support and other predictors that impact their willingness. This study was conducted as part of a larger study exploring behaviours of advance care planning among low-income older adults. Out of a total of 255 participants from the original study, this study included 204 participants who did not complete an advance directive for data analysis. A cross-sectional study using probability random sampling stratified by ethnicity was used. Older adults residing in two supportive housing facilities or who were members of a senior centre in San Diego, California, USA, were interviewed in person between December 2010 and April 2011. Hierarchical logistic regression analysis revealed that the majority of participants (72.1%) were willing to complete advance directives and the factors significantly predicting willingness to complete included self-rated health, attitudes towards advance decision-making and social support. Participants with a poorer health status (OR = 1.43, 95% CI = 1.07-1.90) were more willing to complete advance directives. Conversely, participants with higher positive attitudes (OR = 1.18, 95% CI = 1.00-1.39) and greater social support (OR = 1.07, 95% CI = 1.00-1.15) were also more willing to complete advance directives. The findings suggest the importance of ongoing support from healthcare professionals in end-of-life care planning. Healthcare professionals can be a source of support assisting older adults in planning end-of-life care. Initiating ongoing communication regarding personal value and preference for end-of-life care, providing relevant information and evaluating willingness to complete as well as assisting in the actual completion of advance directives will be necessary.

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Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes

Cited by 75 publications

References 24 publications

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis

Willingness to complete advance directives among low-income older adults living in the USA

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