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Care challenges of home health patients living with dementia: a pathway forward with palliative care

BACKGROUND: Home health care (HHC) is a leading source of care support for older adults with serious illness, particularly patients living with dementia (PLWD). Demand for HHC is expected to continue to grow, driven by an aging population and preference for non-institutional care. HHC agencies are f...

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Autores principales: Cole, Connie S., Dafoe, Ashley, Tietbohl, Caroline K., Jordan, Sarah R., Huebschmann, Amy G., Lum, Hillary D., Jones, Christine D.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10464392/
https://www.ncbi.nlm.nih.gov/pubmed/37641096
http://dx.doi.org/10.1186/s12904-023-01247-9
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author Cole, Connie S.
Dafoe, Ashley
Tietbohl, Caroline K.
Jordan, Sarah R.
Huebschmann, Amy G.
Lum, Hillary D.
Jones, Christine D.
author_facet Cole, Connie S.
Dafoe, Ashley
Tietbohl, Caroline K.
Jordan, Sarah R.
Huebschmann, Amy G.
Lum, Hillary D.
Jones, Christine D.
author_sort Cole, Connie S.
collection PubMed
description BACKGROUND: Home health care (HHC) is a leading source of care support for older adults with serious illness, particularly patients living with dementia (PLWD). Demand for HHC is expected to continue to grow, driven by an aging population and preference for non-institutional care. HHC agencies are frequently under pressure to find effective approaches for improving care delivery and quality. One strategy that has the potential to improve the quality of life and patient satisfaction in HHC for PLWD is the integration of palliative care. Therefore, we sought to understand the experiences and needs of PLWD and their family caregivers specifically focusing on ways that HHC and palliative care may be integrated as part of the care transition from hospital to home, to better support PLWD and their families. METHODS: We conducted a descriptive qualitative study focusing on the perspectives of patients, caregivers, and healthcare team members about palliative care delivery for patients receiving HHC. Interviews were audio-recorded and professionally transcribed. In this analysis, we specifically report on dementia-related content using an iterative, team-based thematic analysis approach. RESULTS: We identified three themes: 1) ’Living in the Whirlwind’ which describes the many competing demands on caregivers time and the associated feeling of loss of control, 2) ’Thinking Ahead’ which describes the importance of thinking beyond the day-to-day tasks to begin planning for the future, and 3) ‘Pathways Forward’ which describes the integration of palliative care into HHC to provide enhanced support for PLWD and their caregivers. CONCLUSION: In this qualitative study, our formative work identified the importance of providing anticipatory guidance (e.g., safety, advance care planning) coupled with emotional and pragmatic care supports (e.g., finding resources, navigating insurance) to sustain caregivers who are struggling with the whirlwind. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-023-01247-9.
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spelling pubmed-104643922023-08-30 Care challenges of home health patients living with dementia: a pathway forward with palliative care Cole, Connie S. Dafoe, Ashley Tietbohl, Caroline K. Jordan, Sarah R. Huebschmann, Amy G. Lum, Hillary D. Jones, Christine D. BMC Palliat Care Research BACKGROUND: Home health care (HHC) is a leading source of care support for older adults with serious illness, particularly patients living with dementia (PLWD). Demand for HHC is expected to continue to grow, driven by an aging population and preference for non-institutional care. HHC agencies are frequently under pressure to find effective approaches for improving care delivery and quality. One strategy that has the potential to improve the quality of life and patient satisfaction in HHC for PLWD is the integration of palliative care. Therefore, we sought to understand the experiences and needs of PLWD and their family caregivers specifically focusing on ways that HHC and palliative care may be integrated as part of the care transition from hospital to home, to better support PLWD and their families. METHODS: We conducted a descriptive qualitative study focusing on the perspectives of patients, caregivers, and healthcare team members about palliative care delivery for patients receiving HHC. Interviews were audio-recorded and professionally transcribed. In this analysis, we specifically report on dementia-related content using an iterative, team-based thematic analysis approach. RESULTS: We identified three themes: 1) ’Living in the Whirlwind’ which describes the many competing demands on caregivers time and the associated feeling of loss of control, 2) ’Thinking Ahead’ which describes the importance of thinking beyond the day-to-day tasks to begin planning for the future, and 3) ‘Pathways Forward’ which describes the integration of palliative care into HHC to provide enhanced support for PLWD and their caregivers. CONCLUSION: In this qualitative study, our formative work identified the importance of providing anticipatory guidance (e.g., safety, advance care planning) coupled with emotional and pragmatic care supports (e.g., finding resources, navigating insurance) to sustain caregivers who are struggling with the whirlwind. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-023-01247-9. BioMed Central 2023-08-29 /pmc/articles/PMC10464392/ /pubmed/37641096 http://dx.doi.org/10.1186/s12904-023-01247-9 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Cole, Connie S.
Dafoe, Ashley
Tietbohl, Caroline K.
Jordan, Sarah R.
Huebschmann, Amy G.
Lum, Hillary D.
Jones, Christine D.
Care challenges of home health patients living with dementia: a pathway forward with palliative care
title Care challenges of home health patients living with dementia: a pathway forward with palliative care
title_full Care challenges of home health patients living with dementia: a pathway forward with palliative care
title_fullStr Care challenges of home health patients living with dementia: a pathway forward with palliative care
title_full_unstemmed Care challenges of home health patients living with dementia: a pathway forward with palliative care
title_short Care challenges of home health patients living with dementia: a pathway forward with palliative care
title_sort care challenges of home health patients living with dementia: a pathway forward with palliative care
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10464392/
https://www.ncbi.nlm.nih.gov/pubmed/37641096
http://dx.doi.org/10.1186/s12904-023-01247-9
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