Carers Impact Eval Brief Longitudinal : simplebooklet.com

In 2020, Carers Victoria was supported by the North Western Melbourne Primary Health Network (NWMPHN) to design and deliver the Online Carer Wellbeing & Connection program. This was adapted from a face-to-face program planned as part of the In Touch initiative to address social isolation, loneliness and connection with carers. The online adaptation of the program responded to the COVID-19 pandemic. The Online Carer Wellbeing and Connection program aims to support emotional wellbeing and improve carer connection. The evaluation of the program began with a feasibility study in 2020 and continued through to 2024. This report presents the longitudinal evaluation of the Online Carer Wellbeing and Connection program delivered over 2021-2024.Page 1LONGITUDINAL EVALUATION BACKGROUNDOver 2.65 million Australians are considered “informal carers,” and globally, billions of hours of informal caring are delivered in home environments [1,2]. Caring for a loved one can be rewarding but may also lead to stress, financial and personal impacts, poorer wellbeing and social isolation [3]. In fact, the Carers Australia 2024 Carer Wellbeing Survey found carers were three times more likely to feel lonely than the general population and 40% were often or always lonely [4]; a factor associated with significant negative impacts on health and wellbeing [5-6]. Despite the known impacts of caring, surprisingly few evidence-based supports to reduce loneliness and improve social connection have been reported [3]. Online technologies may provide an opportunity forcarers to access social opportunities, with prior research showing that the use of technology and the internet can foster social connections for carers [7,8]. To date, some online carer support programs for carers of people with dementia are available [8,9] but little has been reported for carers broadly or as having been co-designed with carers.

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The Online Carer Wellbeing and Connection program consisted of four, 90-minutes sessions, conducted weekly via Zoom. Morning, afternoon and evening sessions were available. Each session was delivered by a trained facilitator from Carers Victoria. Additional technical support was provided to the facilitator. Up to seven carers could participate in the groups at any time. Carers were sent reading material to support program content. SESSION SESSION FOCUS GOALS OF THE SESSION1Defining what isolation & connection is to you. To explore isolation and connection and to identify how it impacts on carers 2What is self care/wellbeing? Strategies for building confidence. Exploring how to cope with challenges in building connectednessTo understand what helps us recognisewhat feels good and finding meaning in connection 3How carer values shape experiences. Exploring how carers might change their understanding of connectednessTo explore connection to self, how we create change and to identify barriers to change 4Exploring self-identity & connection to self. Action planning & goal settingTo explore the stages and process of change and what might help to keep you on track ABOUT THE PROGRAM“Page 2“It’s a fairly intimate group… sometimes it’s just nice to hear other people’s thoughts and what they’re going through.” – 2024

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Researchers in The ALIVE National Centre for Mental Health Research Translation and the Primary Care Mental Health Research Program at The University of Melbourne were commissioned by Carers Victoria to conduct an evaluation of the Online Carer Wellbeing and Connection program. The longitudinal evaluation commenced in March 2021 and concluded in early 2025. This report brings together all of the collected data from 2021-2024 for the evaluation.Carers taking part in the groups completed pre-and post- program surveys by telephone where they were asked about themselves, their caring activities, sense of wellbeing, psychological distress, social participation and loneliness. Carers were also invited to share experiences via a telephone interview after the post-survey. Four sessions of co-design with carer participants from 2021 and 2023 were also“For the first time I actually felt genuinely [like] someone was listening...and I was hearing stuff that I just wasn't getting from all these people [who are usually] around me.”– 2023“ABOUT THE LONGITUDINAL EVALUATIONPage 3conducted as part of the clinical evaluation. The two (2-hour) co-design sessions were important to ensure that co-design principles and carer voices remained central to the findings of the project. “What I loved about the program was that I did not have to get in the car. I did not have to go anywhere. I could just sit here and be me.”– 2021“

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In 2020, The University of Melbourne’s Primary Care Mental Health Research Program was commissioned by Carers Victoria to conduct the first stage of the evaluation for the online program. The first report was delivered in February 2021 and covered two rounds which formed a pilot feasibility study. Then a report in 2022 covered the six rounds delivered across 2021 which included two specific adaptations for Vietnamese carers and men; this was called the pilot trial.In December 2021, Carers Victoria partnered with The ALIVE National Centre for Mental Health Research Translation and NWMPHN to complete a final co-design process and an Impact Evaluation. The Online Carer Wellbeing and Connection program was identified as a model of promise by The ALIVE National Centre for Mental Health Research Translation in 2021. By model of promise, we refer to a program where there has been an independent evaluation of the processes and outcomes of a model of care or intervention and clear impacts have been identified. As such, we delivered a demonstration event which included key stakeholders. The Impact Evaluation report brought together the data collected from both pilot studies to develop an overall picture on carer experiences and impacts. It included findings from the final co-design sessions and the directions for the program and improvements in the future. These co-design outcomes were also portrayed in a co-created video (https://youtu.be/UJ79AbFeVEQ) which was shared at a celebration event with carers and received overwhelmingly positive feedback.Page 4“The group helps relieve you. It doesn’t relieve the caring, it doesn’t relieve the pressure, but it relieves that isolation and feelings of loneliness.”- 2022“In 2023, the University of Melbourne evaluation team and the Carers Victoria team co-authored an academic publication outlining the methods and findings from the clinical evaluation from 2020-2021. The paper was published in the journal ‘PEC Innovation’ in September [10]. This was an important output from the project given the programs clinically significant findings and positive impact across the pilot period and again in 2022. At the beginning of 2023, Carers Victoria responded to carer feedback received in co-design sessions the previous year that articulated a need for an additional final session added onto the four-week program. This made it a five-week program. A further clinical evaluation of the program was then conducted in 2023 and 2024 which led to the removal of the fifth week.

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Three-hundred and forty-one (341) carers took part across the six (6) groups run in 2021, seven (7) groups in 2022-2023 and six (6) groups in 2023-2024. The primary person that the participating carers cared for were:58%Identified as male gender64%Aged ≥35 years94%A partner or family member82%Living with their carer“It opened my eyes to different walks of life.”- 2023 “WHO TOOK PART IN THE EVALUATIONPage 580%aged 35-64 years80% identified as female gender67%born in Australia18%regionally based48%bachelor degree or higher50%employed36%rated health as fair to poorAcross all years, we found:Between September 2020 and December 2024, a total ofenrolled in the program, across98 groups575 carers

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SocialsupportOsloSocial Support Scale, 3 Item5-pointlikert scaleRange = 3 - 15Dalgard, O.S. (1996)Psych distressK10, 10item5-pointlikert scaleRange = 10 - 50Kessler, R.C.,et al. (2002)PhysicalhealthK10+, 10 item5-pointlikert scaleRange = 10 - 50Kessler, R.C.,et al. (2002)LonelinessUCLA Loneliness Scale, 3 item3-pointlikert scaleRange = 3 - 9Hughes, M. E., et al. (2004)Program impact measuresStatistical analyses showed that the program had a positive impact on the psychological distress of carers. We used the K10* measure to look at this which is widely used in primary care to identify mental health needs. Specifically, the program significantly decreased levels of loneliness, and psychological distress and increased the level of supportcarers felt. Days out of carer role due to psychological distress also reduced slightly. * A note on the K10 interpretation can be found in the 2021 report and here: https://doi.org/10.1016/j.pecinn.2023.100218PROGRAM IMPACTS ON CARER MENTAL HEALTHPage 6The Online Carer Wellbeing and Connection program continues to improve carer mental health.“We were able to just let it all out…be able to express our sadness, you know, all sorts of emotions that were going through many of us. That was really good.”- 2023“

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“Our health and well being…we need to take care of that because…if it wasn't for us…to care for our loved ones, who would do it? They need us just as much as we need them and help them on their journey. It actually taught me a couple of lessons - I need to make the time for me. I'm important too! [I need to] always remember that I am important and I am worthy.”- 2022“The top five areas that carers reported providing support for were (including hours spent on task in the last week):TOP 5Page 7Meal prep11 hourse.g. Assisted with/fully prepared meals5Mobility12 hourse.g. Moving around home, getting out of bed, transport4Chores13 hourse.g. Washing, cleaning, ironing31Cognitive/emotional tasks22 hourse.g. Companionship, crises managementPersonal care20 hourse.g. Showering, dressing2

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Learning self-care strategiesBeing understood and feeling heardPage 8PROGRAM DEVELOPMENT & IMPACTThis longitudinal evaluation demonstrates that the Online Carer Wellbeing and Connection program continues to be a model of promise with strong evidence that it improves carer mental health.Year after year we have seen a consistent change in levels of loneliness and psychological distress regardless of the type of caring role and who is being cared for. Year after year carers have said that they have enjoyed the program and found it beneficial. Here we list the five biggest impacts for carers across the four years of the longitudinal evaluation. Each year, improvements were made to the Online Carer Wellbeing and Connection program based on carer feedback. This has progressively improved the program and ensured it is situated in carer experience. Based on carer feedback in 2021, in 2022 a Carer Handbook was developed which could be used as a guide for the program. Based on carer feedback in 2020, in 2021 a ‘what to expect’ document was added to the program and sent to carers in advance. “To be mentally in place for the session, I needed more prep.” Based on carer feedback in 2021 and 2022, in 2023 a 5thsession was trialed which allowed extra time for reflection at the end of the program. "Just as we got into it, it was time to finish up.”“Provide goals and what to expect each week like a week to week outline.”Decreased levels of lonelinessReduced distressIncreased feelings of support2021 20222023PROGRAM IMPACTS“We’d built up a rapport after four weeks and then the fifth week, it felt like I was starting all over again with people I didn’t know.” Based on carer feedback on the 5thsession in 2023, in 2024 the program returned to its original 4 week structure.2024

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1. Wimo A, Gauthier S, Prince M. On behalf of ADI’s Medical Scientific Advisory, Panel, and the Alzheimer’s Disease International Publications Team. Global Estimates of Informal Care. London: Alzheimer’s Disease International (ADI); 2018.2. Denham AMJ, Wynne O, Baker AL, Spratt NJ, Turner A, Magin P, et al. An online survey of informal caregivers’ unmet needs and associated factors. PLoS One 2020; 15:e0243502. https://doi.org/10.1371/journal.pone.0243502.3. Migliorini C, Lam DS-M, Harvey C. Supporting family and friends of Young people with mental health issues using online technology: a rapid scoping literature review. Early Interv Psychiatry 2022;16:935–57. https://doi.org/10.1111/eip.13230.4. Mylek M. and Schirmer, J. 2024. Caring for others and yourself: Carer Wellbeing Survey 2024 report. Prepared by the WellRes Unit, Health Research Institute, University of Canberra for Carers Australia. Carers Australia, Canberra.5. Abbott J. Lim, M., Eres, R., Long, K., Mathews, R. 2018. The impact of loneliness on the health and wellbeing of Australians. InPsych 40(6). 6. Cacioppo, J.T. and Cacioppo, S., 2018. The growing problem of loneliness. The Lancet, 391(10119), p.426.7. Muldrew DHL, Fee A, Coates V. Impact of the COVID-19 pandemic on family Carers in the community: a scoping review. Health Soc Care Commun 2022;30:1275–85. https://doi.org/10.1111/hsc.136778. Bossen A, Kim H, Steinhoff A, Strieker M, Williams K. Emerging roles for telemedicine and smart technologies in dementia care. Smart Homecare Technol TeleHealth 2015;49. https://doi.org/10.2147/SHTT.S59500.9. Weems JA, Rhodes S, Powers JS. Dementia caregiver virtual support—an implementation evaluation of two pragmatic models during COVID-19. Geriatrics 2021;6:80. https://doi.org/10.3390/geriatrics6030080.10. Coe A, Bibb J., Kritharidis R., O'Mara, M., Lautman, R., Densley, K., Kovarik, S., Kaylor-Hughes, C., Lewis, M., & Palmer, V. J. (2023). A mixed-methods evaluation of the impacts of an online Carer wellbeing and connection program. PEC Innovation (3). https://doi.org/10.1016/j.pecinn.2023.100218REFERENCESPage 9Page 10

Carers Impact Eval Brief Longitudinal

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