Just and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocol
Abstract Background Many people living with dementia eventually require care services and spend the remainder of their lives in long-term care (LTC) homes. Yet, many residents with dementia do not receive coordinated, quality palliative care. The stigma associated with dementia leads to an assumptio...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-11-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-022-01097-x |
| _version_ | 1797986882450096128 |
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| author | N. Sutherland O. St. Amant S. Dupuis P. Kontos E. Wiersma M. Brennan |
| author_facet | N. Sutherland O. St. Amant S. Dupuis P. Kontos E. Wiersma M. Brennan |
| author_sort | N. Sutherland |
| collection | DOAJ |
| description | Abstract Background Many people living with dementia eventually require care services and spend the remainder of their lives in long-term care (LTC) homes. Yet, many residents with dementia do not receive coordinated, quality palliative care. The stigma associated with dementia leads to an assumption that people living in the advanced stages of dementia are unable to express their end-of-life needs. As a result, people with dementia have fewer choices and limited access to palliative care. The purpose of this paper is to describe the protocol for a qualitative study that explores end-of-life decision-making processes for LTC home residents with dementia. Methods/design This study is informed by two theoretical concepts. First, it draws on a relational model of citizenship. The model recognizes the pre-reflective dimensions of agency as fundamental to being human (irrespective of cognitive impairment) and thereby necessitates that we cultivate an environment that supports these dimensions. This study also draws from Smith’s critical feminist lens to foreground the influence of gender relations in decision-making processes towards palliative care goals for people with dementia and reveal the discursive mediums of power that legitimize and sanction social relations. This study employs a critical ethnographic methodology. Through data collection strategies of interview, observation, and document review, this study examines decision-making for LTC home residents with dementia and their paid (LTC home workers) and unpaid (family members) care partners. Discussion This research will expose the embedded structures and organizational factors that shape relationships and interactions in decision-making. This study may reveal new ways to promote equitable decision-making towards palliative care goals for LTC home residents with dementia and their care partners and help to improve their access to palliative care. |
| first_indexed | 2024-04-11T07:38:50Z |
| format | Article |
| id | doaj.art-cb0625df4ef94ebcbcd0eba4b9229e46 |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-04-11T07:38:50Z |
| publishDate | 2022-11-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-cb0625df4ef94ebcbcd0eba4b9229e462022-12-22T04:36:38ZengBMCBMC Palliative Care1472-684X2022-11-0121111010.1186/s12904-022-01097-xJust and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocolN. Sutherland0O. St. Amant1S. Dupuis2P. Kontos3E. Wiersma4M. Brennan5School of Nursing, Lakehead University, Centre for Education and Research on Aging and Health, Lakehead UniversityDaphne Cockwell School of Nursing, Toronto Metropolitan UniversityDepartment of Recreation and Leisure Studies, University of WaterlooKITE Research Institute, Toronto Rehabilitation Institute - University Health Network, Dalla Lana School of Public Health, University of TorontoDepartment of Health Sciences, Lakehead University, Centre for Education and Research on Aging and Health, Lakehead UniversityBora Laskin Faculty of Law, Lakehead UniversityAbstract Background Many people living with dementia eventually require care services and spend the remainder of their lives in long-term care (LTC) homes. Yet, many residents with dementia do not receive coordinated, quality palliative care. The stigma associated with dementia leads to an assumption that people living in the advanced stages of dementia are unable to express their end-of-life needs. As a result, people with dementia have fewer choices and limited access to palliative care. The purpose of this paper is to describe the protocol for a qualitative study that explores end-of-life decision-making processes for LTC home residents with dementia. Methods/design This study is informed by two theoretical concepts. First, it draws on a relational model of citizenship. The model recognizes the pre-reflective dimensions of agency as fundamental to being human (irrespective of cognitive impairment) and thereby necessitates that we cultivate an environment that supports these dimensions. This study also draws from Smith’s critical feminist lens to foreground the influence of gender relations in decision-making processes towards palliative care goals for people with dementia and reveal the discursive mediums of power that legitimize and sanction social relations. This study employs a critical ethnographic methodology. Through data collection strategies of interview, observation, and document review, this study examines decision-making for LTC home residents with dementia and their paid (LTC home workers) and unpaid (family members) care partners. Discussion This research will expose the embedded structures and organizational factors that shape relationships and interactions in decision-making. This study may reveal new ways to promote equitable decision-making towards palliative care goals for LTC home residents with dementia and their care partners and help to improve their access to palliative care.https://doi.org/10.1186/s12904-022-01097-xPeople living with dementiaLong-term care homesPalliative careEnd-of-life decision-making |
| spellingShingle | N. Sutherland O. St. Amant S. Dupuis P. Kontos E. Wiersma M. Brennan Just and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocol BMC Palliative Care People living with dementia Long-term care homes Palliative care End-of-life decision-making |
| title | Just and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocol |
| title_full | Just and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocol |
| title_fullStr | Just and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocol |
| title_full_unstemmed | Just and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocol |
| title_short | Just and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocol |
| title_sort | just and inclusive end of life decision making for long term care home residents with dementia a qualitative study protocol |
| topic | People living with dementia Long-term care homes Palliative care End-of-life decision-making |
| url | https://doi.org/10.1186/s12904-022-01097-x |
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