TY - JOUR
T1 - Components of a community model of dementia palliative care
AU - Fox, Siobhan
AU - O'Connor, Niamh
AU - Drennan, Jonathan
AU - Guerin, Suzanne
AU - Kernohan, W.George
AU - Murphy, Aileen
AU - Timmons, Suzanne
PY - 2020/6/30
Y1 - 2020/6/30
N2 - Purpose: The Model for Dementia Palliative Care Project will develop a service-delivery model for community-based dementia palliative care. Many countries provide dementia palliative care services, albeit with considerable variability within these. However, little is known about what service providers consider to be the most important components of a dementia palliative care model. This study aimed to address this knowledge gap.Design/methodology/approach: An exploratory design using a survey method was used, as an initial phase of the wider project. A web-based survey was developed, piloted (n=5), revised, and distributed within five healthcare jurisdictions: the Republic of Ireland, Northern Ireland, England, Scotland, and Wales. The target population was health and social care professionals, policy-makers, and academics interested in dementia and palliative care. Content analysis of open-ended questions identified common themes; descriptive statistics were applied to the closed-ended questions.Findings: Overall, N=112 complete surveys were received. Key care principles incorporated the philosophies of palliative care and dementia care; many described ‘holistic’ and ‘person- centred care’ as core. Important individual service components were support for carers, advanced care planning, information, education and training, activities for ‘meaningful living’, comprehensive disease management, coordinated case management, and linking with community health services and social activities. Barriers included poor availability and organisation of healthcare services, stigma, misconceptions around dementia prognosis, insufficient advanced care planning, and dementia-related challenges to care. Facilitators included education, carer support, and therapeutic relationships.Originality/value: This study, as part of the larger project, will directly inform the development of a novel service delivery Model of Dementia Palliative Care for Ireland. The results can also inform service planning and design in other countries.
AB - Purpose: The Model for Dementia Palliative Care Project will develop a service-delivery model for community-based dementia palliative care. Many countries provide dementia palliative care services, albeit with considerable variability within these. However, little is known about what service providers consider to be the most important components of a dementia palliative care model. This study aimed to address this knowledge gap.Design/methodology/approach: An exploratory design using a survey method was used, as an initial phase of the wider project. A web-based survey was developed, piloted (n=5), revised, and distributed within five healthcare jurisdictions: the Republic of Ireland, Northern Ireland, England, Scotland, and Wales. The target population was health and social care professionals, policy-makers, and academics interested in dementia and palliative care. Content analysis of open-ended questions identified common themes; descriptive statistics were applied to the closed-ended questions.Findings: Overall, N=112 complete surveys were received. Key care principles incorporated the philosophies of palliative care and dementia care; many described ‘holistic’ and ‘person- centred care’ as core. Important individual service components were support for carers, advanced care planning, information, education and training, activities for ‘meaningful living’, comprehensive disease management, coordinated case management, and linking with community health services and social activities. Barriers included poor availability and organisation of healthcare services, stigma, misconceptions around dementia prognosis, insufficient advanced care planning, and dementia-related challenges to care. Facilitators included education, carer support, and therapeutic relationships.Originality/value: This study, as part of the larger project, will directly inform the development of a novel service delivery Model of Dementia Palliative Care for Ireland. The results can also inform service planning and design in other countries.
KW - dementia
KW - palliative care
KW - integrated care model
KW - end of life
UR - http://www.scopus.com/inward/record.url?scp=85087156419&partnerID=8YFLogxK
UR - https://www.emerald.com/insight/content/doi/10.1108/JICA-02-2020-0013/full/html
U2 - 10.1108/JICA-02-2020-0013
DO - 10.1108/JICA-02-2020-0013
M3 - Article
SN - 1476-9018
VL - 28
SP - 349
EP - 364
JO - Journal of Integrated Care
JF - Journal of Integrated Care
IS - 4
ER -