scholarly journals “The challenge of joining all the pieces together” – Nurses’ experience of palliative care for older people with advanced dementia living in residential aged care units

Author(s):  
Sandra Pennbrant ◽  
Cecilia Hjorton ◽  
Caroline Nilsson ◽  
Margareta Karlsson
2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Joanne Tropea ◽  
Christina E. Johnson ◽  
Debra Nestel ◽  
Sanjoy K. Paul ◽  
Caroline A. Brand ◽  
...  

Abstract Background Many people with advanced dementia live in residential aged care homes. Care home staff need the knowledge and skills to provide high-quality end-of-life (EOL) dementia care. However, several studies have found EOL dementia care to be suboptimal, and care staff have reported they would benefit from training in palliative care and dementia. Simulation offers an immersive learning environment and has been shown to improve learners’ knowledge and skills. However, there is little research on simulation training for residential care staff. This article presents the development and evaluation protocol of IMproving Palliative care Education and Training Using Simulation in Dementia (IMPETUS-D) - a screen-based simulation training program on palliative dementia care, targeted at residential care staff. IMPETUS-D aims to improve the quality of palliative care provided to people living with dementia in residential care homes, including avoiding unnecessary transfers to hospital. Methods A cluster RCT will assess the effect of IMPETUS-D. Twenty-four care homes (clusters) in three Australian cities will be randomised to receive either the IMPETUS-D intervention or usual training opportunities (control). The primary outcome is to reduce transfers to hospital and deaths in hospital by 20% over 6-months in the intervention compared to the control group. Secondary outcomes include uptake of goals of care plans over 6 and 12 months, change in staff knowledge and attitudes towards palliative dementia care over 6 months, change in transfers to hospital and deaths in hospital over 12 months. For the primary analysis logistic regression models will be used with standard errors weighted by the cluster effects. A mixed methods process evaluation will be conducted alongside the cluster RCT to assess the mechanisms of impact, the implementation processes and contextual factors that may influence the delivery and effects of the intervention. Discussion In Australia, the need for high-quality advanced dementia care delivered in residential aged care is growing. This study will assess the effect of IMPETUS-D a new simulation-based training program on dementia palliative and EOL care. This large multisite trial will provide robust evidence about the impact of the intervention. If successful, it will be distributed to the broader residential care sector. Trial registration ANZCTR, ACTRN12618002012257. Registered 14 December 2018.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jessica A. L. Borbasi ◽  
Allison Tong ◽  
Alison Ritchie ◽  
Christopher J. Poulos ◽  
Josephine M. Clayton

Abstract Background End of life care for residents with advanced dementia in the aged care setting is complex. There is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia. Methods Focus groups and semi-structured interviews were conducted with residential or care managers from various care homes from one dementia specific aged care organisation in Australia. A comprehensive sampling strategy was used in participating care homes. Transcripts were analysed using thematic analysis. Results 20 residential or care managers from 11 aged care homes in two states of Australia participated in two focus groups (total 16 participants) or individual interviews (4 participants). Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding. Conclusion Aged care manager participants described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident’s terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions, and partnership building between aged care staff and general practitioners, are all required to promote optimal end of life dementia care in residential aged care settings.


2011 ◽  
Vol 17 (1) ◽  
pp. 95 ◽  
Author(s):  
Geoffrey Mitchell ◽  
Caroline Nicholson ◽  
Keith McDonald ◽  
Anne Bucetti

The delivery of palliative care in residential aged care communities is challenging, even more so in rural areas due to workforce ageing and shortages. The objectives of the present study were to: (i) assess the needs of, and quality of palliative care delivered to residents of 16 residential aged care facilities in rural southern Australia; and (ii) identify the needs of care staff to facilitate the delivery of quality palliative care. A cross-sectional survey of all residents, assessing the degree of functional limitation, stage of palliative care, and the presence of several quality indicators was conducted. Separate focus groups of care staff and relatives of residents sought information on the quality of care delivered, perceived strengths and weaknesses of the care delivered, and education and training needs. Quality palliative care in residential aged care facilities (RACFs) is hampered by workforce shortages, with low ratios of registered nurses, limited access to general practitioners after hours, and some communication difficulties. Some staff reported low confidence in technical and psychosocial aspects of care, especially for relatives. Relatives described mostly appropriate care, while acknowledging workload constraints. Most residents whose condition was unstable, deteriorating or terminal received advance care planning, though family expectations and unwillingness to discuss end-of-life care did tend to delay planning. Unstable residents with a reasonable prognosis were more likely to be transferred to hospital than terminally ill residents. Palliative care in participating RACFs appears to be adequate. Provision of targeted education for health care providers and implementation of protocols for advance care planning and end-of life care pathways will enhance this care.


Author(s):  
Sue Hall ◽  
Anna Kolliakou ◽  
Elizabeth A Davies ◽  
Katherine Froggatt ◽  
Irene J Higginson

Sign in / Sign up

Export Citation Format

Share Document