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Concurrent Session - Addressing Carers' Needs
12:05 pm
10 September 2021
Room 2
Presentation Streams
Carers
Session Description
Chair: Lana Glogowski
Session Program
12:05 pm
12:10 pm
Background:
Caring and bereavement in the context of life-limiting illness have been associated with challenges that may precipitate social welfare needs, including income support and housing. However, there is limited consideration of the way in which structural determinants such as interactions with public institutions and social welfare policy shape carer experience pre- and post-death.
Caring and bereavement in the context of life-limiting illness have been associated with challenges that may precipitate social welfare needs, including income support and housing. However, there is limited consideration of the way in which structural determinants such as interactions with public institutions and social welfare policy shape carer experience pre- and post-death.
Aims:
To explore the experiences of bereaved carers of people with life-limiting illnesses interacting with social welfare policy and public organisations in a developed region of recognised socio-economic disadvantage.
Methods:
Underpinned by an interpretive descriptive approach, in-depth interviews were undertaken with specialist palliative care workers (n=7), welfare sector workers (n=14) and former carers of people with life-limiting illnesses (n=12). Data were analysed using framework analysis. Elements of Intersectionality-Based Policy Analysis were applied to findings to illuminate issues of inequity and policy implications.
Findings:
Welfare policy and process-related burdens were identified, related to low rates of income support payments, complex requirements, increasingly virtualised support and transactional agency cultures lacking in grief literacy. Underpinned by neo-liberal values characteristic of the political and economic landscape, these burdens generated the work of system navigation for carers. Structural determinants interacted with certain intersecting social locations related to individual factors, resources and coping approaches; and differentially subjected carers to varying degrees of advantage or disadvantage. Vulnerably positioned carers encountered inequities in the form of financial, housing and employment precariousness alongside heightened psychological distress during, and post caring. Equity-informed upstream, midstream and downstream strategies were identified that might inform health and welfare practice, policy and research. Advocacy is needed in liberal welfare states to promote policy that is more responsive to end-of-life caring and bereavement, alongside increased recognition of the potential for structural disenfranchisement of vulnerably positioned carers.
12:30 pm
Background:
Addressing the needs of carers of people with advanced cancer is not standard practice in the hospital discharge context. The Carer Support Needs Assessment Tool (CSNAT) is an intervention that assesses, prioritises and addresses carers’ personal and practical needs. A 12-month multi-site project provided an opportunity for acute occupational therapists to embed the CSNAT supported by a suite of implementation strategies that targeted behavioural and organisational factors.
Aims:
To describe process and behavioural change strategies used to implement the CSNAT into usual practice.
Method:
A CSNAT Training and Implementation toolkit and the Behaviour Change Wheel framework informed the development and application of implementation strategies across all stages of the project. Evaluation of the success of these strategies are reported in another paper.
Findings:
In response to focus group and stakeholder engagement, most strategies occurred at the clinician and consumer levels; targeting pre-conceived beliefs about the importance of carer needs in discharge planning and clinicians’ scope to address these. Intervention strategies included (1) Education via structured training, reflective practice sessions, and peer modelling; (2) Environmental restructuring via guideline development and use of electronic medical record; (3) Enablement via project and clinical leads; and (4) Persuasion via consumer participation, peer modelling and feedback loops. The delivery of these strategies was an iterative process that changed according to evaluation data obtained along the way.
Conclusions:
A toolkit approach can support implementation of a person-centred intervention like the CSNAT, but it requires supplementation by education and feedback techniques which are adapted to local context and iteratively over time to adequately target behaviour change relevant to the individual clinician, and the work environment.
12:40 pm
Background
Carers of people with advanced cancer highlight the importance of having early attention to their needs during admission and following discharge. The Carer Support Needs Assessment Tool (CSNAT) Approach is a five-stage carer-led intervention that can deliver these outcomes for carers. However, this approach has not yet been tested in the Australian hospital discharge context.
Aim: To evaluate the feasibility of implementing the CSNAT intervention into usual practice to assist carers of people with advanced cancer at hospital discharge.
Method/Design
A convergent mixed methods design was used for data collection and analysis. The CSNAT was delivered by occupational therapists to carers of advanced cancer patients with complex discharge planning needs across two metropolitan acute hospitals. Prospective clinical, service and process data were collected and analysed descriptively; specifically adoption, adherence and participation rates of clinicians and patients/carers; and clinical activity. Patient/carer interview data were also collected and thematically analysed following the intervention.
Results
Of the 31 carers deemed eligible at mid-implementation phase; 58% completed majority of the CSNAT; and 30% completing all five stages; including the follow up after discharge. Carers’ most common needs related to the caring role; specifically managing symptoms, knowing what to expect and who to contact on discharge. There was variation in the timing, duration and mode of CSNAT delivery across individual OTs and the two hospitals. Interviewed carers (n=10) viewed the CSNAT as a comprehensive, structured approach that “looks after” their needs.
Conclusion
The high adoption and participation by clinician and carer suggest thus far, that it may be feasible to embed the CSNAT into routine occupational therapy practice. Understanding how clinician behaviour and different contexts influence it’s/CSNAT feasibility is needed to ensure sustainability and optimal outcomes.
1:00 pm
Background
Carerhelp.com.au was launched in 2019 and provides information and resources to support Australians who are caring for a partner, relative or friend at the end of life. CarerHelp is a collaboration between St Vincent’s Hospital Melbourne, Flinders University, Carer’s Australia and University of Technology Sydney. CarerHelp was developed based on a literature review of the evidence, a scoping study, a national reference group (NRG) consisting of representatives from peak National bodies who provided expert opinion, and direct input from carers via focus groups/interviews.
Carerhelp.com.au was launched in 2019 and provides information and resources to support Australians who are caring for a partner, relative or friend at the end of life. CarerHelp is a collaboration between St Vincent’s Hospital Melbourne, Flinders University, Carer’s Australia and University of Technology Sydney. CarerHelp was developed based on a literature review of the evidence, a scoping study, a national reference group (NRG) consisting of representatives from peak National bodies who provided expert opinion, and direct input from carers via focus groups/interviews.
Aim
The biggest challenge has been the ongoing promotion of CarerHelp to an ever changing group of carers. In this presentation we will discuss the variety of strategies used to promote CarerHelp, present data which shows how each strategy successfully increased usage, and discuss key learnings which may benefit other palliative care projects.
The biggest challenge has been the ongoing promotion of CarerHelp to an ever changing group of carers. In this presentation we will discuss the variety of strategies used to promote CarerHelp, present data which shows how each strategy successfully increased usage, and discuss key learnings which may benefit other palliative care projects.
Methods
Promotional strategies included 1. Communications via our NRG affiliations to their networks via e-news and having a presence on their websites. 2. Developing COVID specific factsheets 3. Monthly news updates (blogs) 4. Offering webinars for health professionals 5. Hosting a Carers Week event 6. Promoting at conferences 7. Providing all palliative care services with an implementation kit 8. Paid advertising with RACGP. 9. Engaging a Public Relations organisation to develop and run a campaign which included targeted advertising on radio, print, and facebook, podcasts, and liaising with newspapers and magazines to develop related ‘personal stories’ connecting to CarerHelp.
Promotional strategies included 1. Communications via our NRG affiliations to their networks via e-news and having a presence on their websites. 2. Developing COVID specific factsheets 3. Monthly news updates (blogs) 4. Offering webinars for health professionals 5. Hosting a Carers Week event 6. Promoting at conferences 7. Providing all palliative care services with an implementation kit 8. Paid advertising with RACGP. 9. Engaging a Public Relations organisation to develop and run a campaign which included targeted advertising on radio, print, and facebook, podcasts, and liaising with newspapers and magazines to develop related ‘personal stories’ connecting to CarerHelp.
Outcomes
The success of each of these strategies will be discussed in relation to website usage statistics, key learnings, and plans for future communication strategies. While CarerHelp has reached an average of 1000+ new users a month, it is clear that ongoing regular communications are vital to keeping carers and health professionals aware of and using CarerHelp for contemporary end of life information.
The success of each of these strategies will be discussed in relation to website usage statistics, key learnings, and plans for future communication strategies. While CarerHelp has reached an average of 1000+ new users a month, it is clear that ongoing regular communications are vital to keeping carers and health professionals aware of and using CarerHelp for contemporary end of life information.
1:20 pm
Background
Australians with a terminal illness, who wish to be cared for and to die at home, require a carer to assist with ongoing practical care and symptom management. This can include managing breakthrough symptoms using subcutaneous medicines to avoid unnecessary suffering and unwanted transfers to inpatient units.
Australians with a terminal illness, who wish to be cared for and to die at home, require a carer to assist with ongoing practical care and symptom management. This can include managing breakthrough symptoms using subcutaneous medicines to avoid unnecessary suffering and unwanted transfers to inpatient units.
Many carers report feeling motivated, but unprepared, for the task of preparation and/or administration of subcutaneous medicines.
Aim
The aim of this national study, funded by the Australian Government Department of Health, was to assess the impact of an education and resource package, caring@home, on carers’ knowledge confidence and skills in managing breakthrough symptoms using subcutaneous medicines for home-based palliative care patients. Carers’ experiences of using the resources to manage breakthrough symptoms were also examined.
Methods
Nurses trained volunteer carers to help manage breakthrough symptoms for the person they were caring for at home using the caring@home resources. Carers were later invited to complete a short survey about the training and the resources and to consent to a telephone interview to further elucidate how the caring@home training and resources impacted their caring experience.
Findings
Fifty carers completed the survey and 12 were interviewed.
Most carers reported that the nurse-led training and caring@home resources provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines and would recommend the package to others. Qualitative interview analysis revealed seven main themes of importance covering being a carer with medicine responsibility, impact of medicine experience on confidence, training and resource feedback, medicine preparation, symptom management and unmet carer needs.
The caring@home resources can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home, if that is their wish; carers become part of the healthcare team.