Equine-assisted services for people living with dementia: a systematic review.

BACKGROUND: Dementia has a significant impact on the social, physical, and psychological wellbeing of people living with dementia, their families and society. Animal-assisted interventions can have positive effects on the health and wellbeing of people living with dementia. Equine-assisted services are animal-assisted non-pharmacological interventions which have improved the health and wellbeing of diverse populations. The impact of participating in equine-assisted services on the health and wellbeing of people with dementia is unclear. A systematic review was conducted to synthesise evidence investigating the effects of participating in equine-assisted services on the health and wellbeing of people living with dementia. DESIGN: Systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. METHODS: The databases CINAHL, EMBASE, MEDLINE, and Web of Science were searched for any research published prior to 14 June 2023. Peer-reviewed publications in the English language utilizing methods deriving quantitative and/or qualitative data were eligible. Methodological quality of included studies was assessed using the Mixed Methods Appraisal Tool. Findings from studies were synthesised using a deductive approach. RESULTS: Of the 223 articles screened, six met the inclusion criteria: four quantitative and two qualitative studies. The six studies represent four separate equine interventions. Studies were of moderate to strong quality. Participants were people living with dementia (n = 44, mean age range 70-83 years), dementia care partners (n = 5, mean age 58), and equine-assisted services providers (n = 5). Interventions varied in duration, activities conducted, outcomes measured, and measurement tools used. Studies found a favourable impact of participating in equine-assisted services on the neuropsychiatric symptoms and quality of life of people living with dementia. Participating in equine-assisted services improved well-being, functional abilities, social participation, and communication, while also having a positive effect on social, emotional, and behavioural outcomes, and physical health. CONCLUSIONS: The limited but high-quality literature investigating the impact of equine-assisted services among people living with dementia suggests that equine-assisted services can have a positive impact on the health and wellbeing of people living with dementia. Additional robust studies contributing to the evidence base are warranted; such studies can support the development of programs and further elucidate the impact of participation.

Predictors of resilience for people with spinal cord injury over two periods of COVID-19 social distancing restrictions: a 12-month longitudinal study using structural equation modelling.

BACKGROUND: The novel coronavirus (COVID-19) pandemic is disproportionately impacting the health of people with disability. Resilience has remained an important health promoting characteristic during periods of social distancing restrictions. Factors promoting resilience for people with disability under the context of the pandemic remains poorly understood. Studies have yet to investigate evidence-based factors that promote resilience over multiple periods of restrictions for people with disability. METHODS: A longitudinal study developed via a collaborative partnership between peer-support workers with lived experience of spinal cord injury (SCI) and university researchers was undertaken to fill knowledge gaps around factors promoting resilience for people with SCI during two periods of stringent social distancing restrictions within Victoria, Australia. Over 12-months, participants with SCI completed two surveys, towards the end of two lockdown periods. Evidence-based factors associated with resilience were measured. The Impact on Participation and Autonomy Questionnaire, the International SCI Quality of Life scale, and the 10-item Conor Davidson Resilience Scale, respectively measured autonomy and participation limitations, life satisfaction and psychological health, and resilience. A structural equation modelling (SEM) approach established factors directly and indirectly associated with resilience. RESULTS: A model with excellent fit was produced. During two extended lockdowns over the 12-month period, increased family role limitations and favourable psychological health were respectively, negatively (Lockdown 1 [n = 127]: ß = -.251, p < .01, Lockdown 2: ß = -.400, p < .01) and positively (Lockdown 1: ß = .601, p < .01, Lockdown 2 [n = 65]: ß = .430, p < .01) associated with resilience. Indirect negative associations between resilience and increased outdoor autonomy limitations (Lockdown 1: ß = -.195, p < .01, Lockdown 2: ß = -.255, p < .01) and social life limitations (Lockdown 1: ß = -.217, p < .01, Lockdown 2: ß = -.142, p < .05) existed, and these relationships were moderated by psychological health. CONCLUSIONS: Psychological health, and participation and autonomy are determinants of resilience during periods of crisis. Health and social care providers and public health departments should prioritise programs promoting these domains, to counter the negative impact of social distancing.

Emergency medical services: the next linking asset for public health approaches to palliative care?

Emergency medical services (EMS) are a unique workforce providing 24/7 emergency care across high-income countries (HICs) and low- and middle-income countries (LMICs). Although traditionally perceived as first responders to traumatic and medical emergencies, EMS scope of practice has evolved to respond to the changing needs of communities, including a growing demand for community-based palliative care. Public health provides a useful framework to conceptualise palliative and end-of-life care in community-based settings. However, countries lack public policy frameworks recognising the role EMS can play in initiating palliative approaches in the community, facilitating goals of care at end of life and transporting patients to preferred care settings. This article aims to explore the potential role of EMS in a public health palliative care approach in a critical discussion essay format by (1) discussing the utility of EMS within a public health palliative care approach, (2) identifying the current barriers preventing public health approaches to EMS palliative care provision and (3) outlining a way forward through priorities for future research, policy, education and practice. EMS facilitate equitable access, early provision, expert care and efficacious integration of community-based palliative care. However, numerous structural, cultural and practice barriers exist, appearing ubiquitous across both HICs and LMICs. A Public Health Palliative Care approach to EMS Framework highlights the opportunity for EMS to work as a linking asset to build capacity and capability to support palliative care in place; connect patients to health and community supports; integrate alternative pathways by engaging multidisciplinary teams of care; and reduce avoidable hospital admissions by facilitating home-based deaths. This article articulates a public health approach to EMS palliative and end-of-life care provision and offers a preliminary framework to illustrate the components of a potential implementation and policy strategy.

Developing a death literacy index.

Performing end-of-life care can be a catalyst for developing a capacity called death literacy. This study aimed to develop a comprehensive and useable measure of death literacy that has the potential to assess interventions with individuals, communities, and societies. Using a mixed methods approach, a Death Literacy Index was developed from personal narratives and input from practitioners and experts. Refined on a sample of 1330 Australians using exploratory and confirmatory factor analysis and structural equation modeling, a 29-item Death Literacy Index was found to be reliable and demonstrated construct validity. Further studies are needed to test predictive validity.

Healthy End of Life Project (HELP): a progress report on implementing community guidance on public health palliative care initiatives in Australia.

BACKGROUND: Contemporary end of life care policies propose increasing community capacity by developing sustainable skills, policies, structures, and resources to support members of a community in caring for each other at the end of life. Public health approaches to palliative care provide strategies to bring this about. Practical implementation can however be ineffective, principally due to failures to grasp the systemic nature of public health interventions, or to ensure that programs are managed and owned by community members, not the professionals who may have introduced them. This article outlines a comprehensive community development project that identifies local end of life needs and meets them through the efficient use of community resources. METHODS: The project is the product of a three-phase enquiry. The first phase, carried out in a local community, examined carers' experiences of home-based dying, the networks that supported them during care, and broader community networks with the potential to extend care. Data were collected through in-depth research interviews, focus groups and consultation with a community research reference group. Findings were key issues to be targeted by a local community development strategy. In the second phase, these local findings were compared with other practice accounts to identify themes common to many contexts. A public health palliative care framework was then used to produce an evidence-informed community development model for end of life care. The third phase involves implementing and evaluating this model in different Australian contexts. RESULTS: A major theme emerging in phase one of the enquiry was the reluctance of carers to ask for, or even accept, offers of help from family, friends and community networks despite their evident need for support while providing end of life care at home. Others' willingness to provide support was thus hindered by uncertainty about what to offer, and concern about infringing on people's privacy. To develop community capacity for providing end of life care, these social norms need to change. Phase two brought public health strategies to bear on the themes identified in phase one to develop the Healthy End of Life Project (HELP), a strengths-based sustainable community development project. This provides evidence-based and research-informed resources that equip communities to work cooperatively with carers, family, friends and neighbors in support of residents wishing to receive end-of-life care in their home or a community setting. Services may initiate use of the framework, and will share their expertise on health and death matters, but communities are the experts to lead implementation in their local area. The third part of the article outlines current initiatives to implement and evaluate HELP in several Australian contexts. CONCLUSIONS: The substantive outcome of this enquiry is the 'Healthy End of Life Project (HELP); offering and providing, asking and accepting help'.

Providing end-of-life care in disability community living services: An organizational capacity-building model using a public health approach.

BACKGROUND: There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of people with intellectual disabilities, particularly those in disability community living services. METHODS: A mixed-methods approach was used. Quantitative data were gathered through a survey of disability support staff working in government-managed community living services in the Australian state of Victoria. These quantitative data informed the collection of qualitative data through focus groups and research interviews. A public health palliative care framework provided the basis for developing an organizational change model from the consolidated data. RESULTS: There is a strong relationship between organizational structure and culture, and both influence end-of-life practice in community living services. Barriers to good practice arise from the differing attitudes of paid carers involved, and from uncoordinated approaches reflecting misaligned service systems in the disability and palliative care fields. Organizational reorientation is crucial to achieving sustainable change that will support healthy dying. CONCLUSIONS: End-of-life care requires the collaboration of disability and palliative care services, but for care to achieve palliative care goals, the collaboration must be led by disability services. We outline here an organizational model we have developed from public health principles to manage end-of-life care in community living services.

OA48†Engaging communities: the impact of a decade of health promoting palliative care policy in victoria.

BACKGROUND: Health promoting palliative care began in Victoria, Australia and has been included in Victorian palliative care policy for over a decade. AIM: To review the way Victorian palliative care services have responded to government policies and strategic directions that are based upon health promoting palliative care. METHOD: Thematic analysis of the annual reports of regional palliative care consortia over the past two four-year policy cycles. The eight regional consortia represent all palliative care services in the state of Victoria, and report their activities against the government's strategic directions. RESULTS: Most palliative care services report some level of community engagement, but health promoting approaches are seldom seen as core business. Community engagement tends to be episodic or event-driven rather than sustained and sustainable. Most services express a desire to increase community engagement, but report that they struggle to do so in the face of the increasing demand for clinical service provision. CONCLUSION: The understandings of health promotion and community development that inform the current community engagement activities of palliative care services need to be expanded. We suggest that this is more likely to happen if community groups become active in engaging the health services, including palliative care services, rather than by continuing to focus solely on building the services' community engagement capacities. Some strategic opportunities for accomplishing this reorientation will be identified and illustrated as part of the presentation.

OA49†Disadvantaged dying: a compassionate communities approach for people with intellectual disability.

BACKGROUND: The literature on end of life care in the disability sector is sparse, despite deaths in residential disability homes becoming more common as the cohort of long-term residents ages. If people with disability are to have choice about their dying, both the knowledge and skills of their carers and systemic barriers that are embedded in legal structures, policy and service systems must be addressed. AIM: In partnership with disability services we aim to build sustainable organisational capacity that will equip workers in residential disability homes to coordinate dying residents' care according to those residents' wishes. METHOD: The attitudes of disability workers toward providing end-of-life care for their clients, and their experiences in doing so, have been surveyed. The survey identifies both the assets workers bring and the barriers they experience in providing end-of-life care. Focus groups have explored these findings further in order to develop strategies that build workers' capacity to provide end of life support for residents. RESULTS: Results from the survey, distributed to over 1000 staff members in north-west metropolitan Melbourne, reveal both the relational skills workers bring to their task and their lack of training for end of life care. These survey results, and the findings from subsequent focus groups, will be presented. The effectiveness of HPPC interventions being developed will also be discussed. CONCLUSION: A Compassionate Communities approach enhances residential disability care workers' capacity to provide end of life care for clients. Numerous structural barriers at the policy and service level still need to be overcome if people with disability are to have genuine options concerning how, and where, they die.