The Carer Research Incubator and Workshop held at UTS on 7 Dec 2020 provided a transdisciplinary, generous and active space for researchers and advocates working with and for carers to connect with a group of researchers, sector practitioners and government.
Carer Research Incubator and Workshop
Carer Research Incubator and Workshop
Presented by the UTS Centre for Carers Research IPPG, in collaboration with NSW Department of Communities and Justice - Carers Investment Program.
In the troubling context of COVID19 effects and affects, with a particular focus on how we can practically support and strive for evidence-based, better outcomes for carers, participants had the opportunity to think together, sharing and listening to work-in-progress research and actions to improve carers lives. This hive of interested engaged people brought their networks and levers into the incubator to expand opportunities for carer research and actions.
The day was divided into two sessions: Morning and afternoon. Participants attended in person or over Zoom. The morning session was a research incubator where seven early career researchers and Higher Degree Researchers pitched their work-in-progress research, to elicit responses or support from the audience. The afternoon session was an exploration by sector luminaries on the context and opportunities for carers coming out of 2020. Five presentations were made, followed by panel discussions. The afternoon session was captured by a digital scribe, who synthesised the key learnings from the presentation and discussions and those illustrations can be seen below.
We define a carer as someone who provides ongoing, unpaid help to someone who needs support because of a disability, long-term or life limiting illness, mental illness, dementia, or ageing.
Research incubator pitches and contacts
Karen Hutchinson: karen.hutchinson@mq.edu.au
'Absent voices': exploring whole family experiences living with parental refractory epilepsy to inform service development and delivery
Objectives: The unpredictable presentation of epilepsy can have a ripple effect on all aspects of life. It can impact not only the person living with epilepsy but, to varying degrees, family members. This research aims to address evidence-gaps in understanding and knowledge of whole family experience of living with parental refractory epilepsy, in Australia.
Methods: Qualitative data was collected from 2 Stakeholder Panel meetings, and semi structured interviews from 5 families with parents living with epilepsy, around Australia. Interviews explored inter-familial relationships, social and disease-impact and views on healthcare practices and support services, and impact of COVID-19. A thematic analysis of qualitative data has commenced.
Results: The Stakeholder Panel meetings and family interviews highlighted seven preliminary themes related to the impact of parental epilepsy on family life; financial, dependency, attitudes, risks, mental health, access to healthcare and support, and changed family dynamics and relationships. Additional stress associated with COVID-19 was emphasised.
Conclusions: The preliminary study findings provide social, emotional and contextual understanding of whole family need, and increase the evidence-base on the impact of parental epilepsy on self and other family members. These findings will help to guide future service developments and highlight the importance of family-oriented health and social care.
Zoi Triandifilidis: Zoi.Triandafilidis@health.nsw.gov.au
What does it mean to care in the context of anxiety and depression?
In collaboration with international scholars, Professor McMullen and Professor Lafrance, researchers at Everymind are conducting discourse analysis of semi structured interviews with 22 people with lived experience of supporting family members and friends who experience symptoms of depression and/or anxiety. This presentation seeks to engage a diverse group of scholars, sector practitioners and policy makers in a conversation about caring identities. Drawing on extracts from the interviews, I will ask:
- Who or what is a carer?
- What does it mean to be a “good” carer?
- What are the implications of taking up an identity as a carer?
- How do carers find the discursive footing required to self-care?
The resulting conversation will help to inform the analysis and discussion for a chapter on this topic which has been accepted for publication in an upcoming book titled, Relationships and Mental Health: Towards a relational understanding of distress. The presentation also integrates artworks (see Figure 1.) produced by Australian illustrator and designer, Lucy Klippan, in response to this work. Lucy’s illustrations assist in conveying the variation and nuance in these carers’ lived experiences, and provide greater impact than what traditional written communication methods alone can offer.
Elloyse Saw: Elloyse.Saw@health.nsw.gov.au
Recruiting carers of people with depressive and anxiety symptoms
Everymind has developed Minds Together for carers, an online support program for people who support someone with symptoms of depression or anxiety. This year, researchers at Everymind tested the program’s feasibility and acceptability. While recruitment for this study was successful (N=108), more than 50% of participants did not log in. This suggests that recruitment efforts will need to improve to account for the same degree of attrition in a proposed, larger national randomised controlled trial. At least double the number of participants are needed for the RCT to have power. This presentation is concerned with seeking suggestions from experts on effectively recruiting carers using online methods. Specifically I ask:
- Have you used online methods to recruit carers in the community? What was your experience?
- Do you have suggestions for increasing engagement via social media?
- Do you have tips on language ‘dos’ and ‘don’ts’ when recruiting carers from the community?
These conversations will inform decisions around recruitment plans for the RCT, such as language used in recruitment collateral. The presentation will also include results from the feasibility study and relevant comments from carers that may support this discussion.
Melissa Miao: Melissa.Miao@uts.edu.au
Implementing an online service delivery model for communication partner training: Co-designing implementation with adults with acquired brain injury and their communication partners
The Research Team are currently recruiting Communication Partners for the project: Moving brain injury treatment online
What is this study about?
We are creating an online treatment to improve communication skills between a person with a brain injury and the people around them. This research is to find out the most important issues to think about when using or providing this treatment online.
We will share research questions, evidence and ideas with you and you can share your experiences, ideas and opinions with us.
Who can participate?
People with experience communicating with or providing care for someone with brain injury.
What will I need to do?
- Complete a short online survey of which issues you think are most important
- Join a 3-hour video call discussing why you think these issues are important
As a healthcare consumer, you will be paid $129.24 for your input.
I’m interested! Where can I find out more?
Email melissa.miao@uts.edu.au
This study has been ethically approved (UTS MREC ETH20-5466)
Kristin Bindley: Kristin.Bindley@health.nsw.gov.au
Bereavement and bureaucracy: A study of social welfare needs post-caring, in an area of social disadvantage
Bereavement following life-limiting illness is associated with cascading challenges. Yet potential for bereavement to be shaped by social and structural inequities is underexplored, including consequences of interactions with government institutions and social policy. This qualitative study employed interpretive description and sought to inform approaches that might improve the experiences of bereaved carers receiving government income support or housing assistance in Western Sydney. In depth interviews were undertaken with specialist palliative care workers, welfare sector workers and bereaved carers of people with life-limiting illnesses. Data were analysed using framework analysis. Participants provided rich description of relevant welfare policy that may contribute to financial, housing and employment precariousness during and post-caring. Personal, interpersonal and structural factors that affect the navigation of income support and housing needs were articulated, alongside professional and structural recommendations that might improve carer experience. The intersection of certain social locations and structural forces such as transactional agency culture and “siloed” organisations appears to shape the capacity of carers to navigate welfare issues in bereavement, and has potential to heighten structural burden and precariousness. Findings provoke questions about possibilities for tailoring welfare processes given post-caring needs, reviewing the virtualised nature of welfare provision, and cultivating cross-sectoral relationships of care.
Chloe Watfern: chloe.watfern@unsw.edu.au
Crafting Care
The experience of dementia is inherently interpersonal, and carers face their own unique challenges. As we grapple with the long tail of a global pandemic and horrific allegations surfacing via the Royal Commission into Aged Care Quality and Safety, it has never been more important to listen to, and value, carers’ voices. In this participatory research project, a small group of carers, researchers and artists will become “craftivists” during a series of workshops led by textile artist and educator Michele Elliot. Craftivism combines craft with activism to inspire positive change in the world. Participants will be empowered to use low tech processes and colourful materials as they create objects that act as a vehicle for their messages. The research questions that this project seeks to address are:
- What are the key issues or experiences that carers would like to communicate, and to whom?
- How is the process of making together, as craftivists, experienced?
- What impact does the project have on audiences? (e.g. empathy/attitudes/behavioural-change)
Cathy Duncan: cduncan@uow.edu.au
Can Participatory Action Research really impact social policy? Carer recognition: experiences, practices and recommendations for reforms to the Home Care Packages program
This paper presents a participatory action research project highlighting the importance of research partnerships with carers in advocating for policy change.
A ‘Framework for Carer Recognition in the Home Care Packages Program’ was developed in collaboration with carers, care recipients, Carers NSW and an aged care provider.
The research collaboration then co-authored a series of submissions to the Aged Care Royal Commission (ACRC) regarding the lack of Carer Recognition in the Home Care Packages Program. This included a set of recommendations for policy change. This resulted in the ACRC consulting Ms Cathy Duncan regarding policy reform to the Home Care Packages Program.
Cathy will reflect on the opportunities and challenges of conducting Participatory Action Research with carers and in collaboration with Carers NSW and an aged care provider to impact policy.
This paper provides valuable insights for carers, policy makers, researchers and service providers into how research collaborations can be an effective mechanism for providing carers with a ‘voice’ in the new world of market driven care. This has relevance to disability and mental health policy contexts.
Evidence for carers coming out of 2020
NSW Carer Recognition Act: 10 Years On Video has no sound |
Paula Simoes dos Santos (UTS): Paula.Simoes@uts.edu.au Edwina Deakin (UTS): edwina.deakin@uts.edu.au |
Rising inequality, COVID -19 and economic and social recovery in NSW |
Anna Bacik (NCOSS): anna@ncoss.org.au
|
Carers NSW: Caring through crisis – what works for carers coming out of 2020? |
Sarah Judd-Lam (Carers NSW): sarahj@carersnsw.org.au |
Panel Discussion: Rising social inequality and opportunities for carers 2020 |
Video has no sound |
The NSW Carers Strategy 2020 -2030: Priority areas and 2020 to 22 Action Plans. |
Helen McFarlane (DCJ): helen.mcfarlane@facs.nsw.gov.au Leane Flaherty (DCJ): Leane.Flaherty@facs.nsw.gov.au |
Carers NSW 2020 National Carer Survey: Opportunities for research collaboration, service innovation and systemic advocacy |
Lukas Hofstätter (Carers NSW): lukash@carersnsw.org.au |
Panel Discussion: NSW Carers Strategy and National Carers Survey |
Video has no sound |
.