Dataset Information

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation.

ABSTRACT:

Background

As older adults approach the end-of-life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL.

Objective

This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care.

Method

A descriptive qualitative study involving three focus group discussions (n = 18) and six in-depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically.

Results

Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes.

Conclusion

Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required.

SUBMITTER: Lewis ET

PROVIDER: S-EPMC6543262 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Publications

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation.

Lewis Ebony T ET Harrison Reema R Hanly Laura L Psirides Alex A Zammit Alexandra A McFarland Kathryn K Dawson Angela A Hillman Ken K Barr Margo M Cardona Magnolia M

Health expectations : an international journal of public participation in health care and health policy 20190106 3

<h4>Background</h4>As older adults approach the end-of-life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL.<h4>Objective</h4>This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care.<h4>Method</h4>A descriptive qualitative study involving three focus group discussions (n = 18) and six in-depth interviews with ...[more]

PMID: 30614161

Similar Datasets

Project description:BackgroundOwing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver's life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness.MethodsA qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews.ResultsWe identified an underlying psychological factor "perceived freedom of choice" which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver.ConclusionsThe concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers' life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically at risk of becoming overloaded. Whether people perceive that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention needed to support caregivers.

Dataset Information

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation.

Background

Objective

Method

Results

Conclusion

Publications

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation.

Similar Datasets

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