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Australian Health Review Australian Health Review Society
Journal of the Australian Healthcare & Hospitals Association
RESEARCH ARTICLE

Improving dementia and palliative care through the co-design of an integrated model of care

Zoi Triandafilidis https://orcid.org/0000-0001-6187-4703 A B C D * , Nicholas Goodwin A B C D , Karen Hutchinson B E , Sarah Yeun-Sim Jeong B F , Suzanne Lewis A C , Nicolette Hodyl G , Georgie Quick B , Jacinta Hensby B and Andrew Montague H
+ Author Affiliations
- Author Affiliations

A Central Coast Research Institute, Gosford, NSW, Australia.

B Central Coast Local Health District, Gosford, NSW, Australia.

C The University of Newcastle, Newcastle, NSW, Australia.

D Hunter Medical Research Institute, Newcastle, NSW, Australia.

E Australian Institute of Health Innovation, Macquarie University, Sydney, NSW, Australia.

F The University of Sydney, Sydney, NSW, Australia.

G New South Wales Regional Health Partners, Newcastle, NSW, Australia.

H Present address: Uniting, Sydney, NSW, Australia.

Australian Health Review https://doi.org/10.1071/AH24123
Submitted: 6 May 2024  Accepted: 25 July 2024  Published: 15 August 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of AHHA.

Abstract

A need exists to improve end-of-life care for people with advanced dementia, by integrating available services. Stakeholders on the Central Coast of New South Wales united to co-design an improved model of care that would integrate care across care settings. The aim of this project was to co-design a model of integrated, person-centred palliative care for people with dementia at the end of life. This case study describes seven co-design workshops which took place in 2023 to develop a program logic model. Workshops were run in a hybrid format, with stakeholders attending in person and online. Workshops were attended by an average of 26 stakeholders including people and carers with lived experience of dementia, healthcare workers from hospital and community-based services (public and private), primary care clinicians, and participants from the not-for-profit sector and academia. Stakeholders developed a shared mission and purpose and identified priority areas for improving palliative care for people with advanced dementia. This led to the development of a program logic model, which included components relating to education for people with dementia, carers, and professionals, care coordination and referrals, and regular multidisciplinary case conferences. Feedback on the model from a new audience identified areas for improvement. The stakeholder group participated in a survey to evaluate the effectiveness of the co-design. The survey found that stakeholders were satisfied with the model of care the group developed. This project highlighted the value of adopting a co-design approach with stakeholders to develop a new model of care.

Keywords: co-design, dementia, integrated care, model of care, palliative care, program logic, service delivery, workshops.

References

Sampson EL, Gould V, Lee D, et al. Differences in care received by patients with and without dementia who died during acute hospital admission: A retrospective case note study. Age Ageing 2006; 35: 187-189.
| Crossref | Google Scholar | PubMed |

Triandafilidis Z, Carr S, Davis D, et al. Improving end-of-life care for people with dementia: A mixed-methods study. BMC Palliat Care 2024; 23: 30.
| Crossref | Google Scholar | PubMed |

Triandafilidis Z, Carr S, Davis D, et al. What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings. BMC Geriatr 2024; 24: 40.
| Crossref | Google Scholar | PubMed |

Lewis S, Triandafilidis Z, Curryer C, et al. Models of care for people with dementia approaching end of life: A rapid review. Palliat Med 2023; 37: 915-930.
| Crossref | Google Scholar | PubMed |

Vargas C, Whelan J, Brimblecombe J, Allender S. Co-creation, co-design, co-production for public health - a perspective on definition and distinctions. Public Health Res Pract 2022; 32: 3222211.
| Crossref | Google Scholar | PubMed |

Carey N, Abathun E, Maguire R, Wodaje Y, Royce C, Ayers N. Co-design and prototype development of the ‘Ayzot App’: A mobile phone based remote monitoring system for palliative care. Palliat Med 2023; 37: 771-781.
| Crossref | Google Scholar | PubMed |

Hutchinson K, Roberts C, Roach P, et al. Co-creation of a family-focused service model living with younger onset dementia. Dementia 2020; 19: 1029-1050.
| Crossref | Google Scholar | PubMed |

Low C, Namasivayam P, Barnett T. Co-designing community out-of-hours palliative care services: a systematic literature search and review. Palliat Med 2023; 37: 40-60.
| Crossref | Google Scholar | PubMed |

Liu L, Wang Y, Ho TC-K, et al. Co-designing a culturally-sensitive theory-driven advance care planning game with Chinese older adults and healthcare providers. Palliat Med 2024; 38: 343-351.
| Crossref | Google Scholar | PubMed |

10  Ogrinc G, Davies L, Goodman D, Batalden P, Davidoff F, Stevens D. SQUIRE 2.0–Standards for QUality Improvement Reporting Excellence– revised publication guidelines from a detailed consensus process. J Am Coll Surg 2016; 222: 317-323.
| Crossref | Google Scholar |

11  McKercher KA. Beyond sticky notes: Doing co-design for real: Mindsets, methods, and movements. 1st edn. Sydney: Beyond Sticky Notes; 2020.

12  Miller R, Brown H, Mangan C. Integrated care in action: A practical guide for health, social care and housing support. London: Jessica Kingsley Publishers; 2016.

13  Australian Institute of Family Studies. How to develop a program logic for planning and evaluation. 2016. Available at https://aifs.gov.au/resources/practice-guides/how-develop-program-logic-planning-and-evaluation

14  Goodwin N, Brown A, Johnson H, et al. From people-centred to people-driven care: Can integrated care achieve its promise without it? Int J Integr Care 2022; 22: 17.
| Crossref | Google Scholar | PubMed |