Carer Support Research Articles

A collaboration between first- and second-line healthcare for persons with a disability in Flanders to strengthen quality of care, continuity of care and affordability of care.

The introduction of personal financing within the disability sector, in Flanders, in 2017, created the opportunity to enter into broader collaborations with other professional services. This allows us to strengthen the quality of care and support for people with disabilities. We therefore started a collaboration between first and second line healthcare. This collaboration is based on 3 major pillars, quality of care, continuity of care and affordability of care. With the introduction of personal financing in the disability sector, care focusses more on the person with a disability. The adult person is allocated a budget based on his need for support and can buy care and support with it. These can be purchased more widely than only from the healthcare providers licensed by the VAPH (Flemish Agency for Persons with Disabilities). When we look at quality of care, we use the expertise of both partners. The licensed care provider mainly directs the disability-specific part whereas support in the daily ADL activities comes from home care. Both partners always coordinate with each other and the first focus is always on the person with a disability, which takes a central role. Drawing up individual support plans, linked to objectives, is one of the tasks of the licensed healthcare provider. Home care provides value in carrying out this objective together with the person with a disability. In a concrete example: the residential supporter indicates that the resident is learning to handle money, the home care supporter takes this into account during the purchases at the bakery together with the client and gives feedback to the residential supporter about the experience. We strengthen the quality of care by combining the expertise of both parties and create more time to work at the person's pace. In doing so, we focus on talent, rather than starting from the disability.Two components are important for the continuity of care: the effective presence, but also the fixed character of the employees who are present. People with disabilities are more sensitive to change than other target groups. That is why focusing on continuity, both in time and in person, is important in this partnership. The home care selects a group of employees to commit as a team. The residents therefore can always rely on the same people for support at home: the number of faces remains limited and a bond of trust is created. To ensure continuity in time, the team members replace each other when needed, so the support is continuous. With home care we enter the (replacing) home situation and we focus the tasks on supporting the person. As a result, we can also invoice the person according to the regulations within home care. We only have to calculate the customer contribution and that makes it affordable. We work in 1-on-1 situations, but we also support in groups. In the latter case, the costs are shared by all persons who use the support. Through this partnership, we create a more high-quality, affordable care for people with disabilities.

Skills-based online self-help program for carers of people with an eating disorder (SupportED): A case series evaluation.

To investigate the acceptability, feasibility, and preliminary effectiveness of "SupportED," a novel, online, self-paced skills-based program for carers/support people of those with lived and/or living experience of an eating disorder (ED). Carers of a loved one with an ED were invited to undertake a five-module skills-based (one core module, four optional modules) online program at their own pace. Modules cover general information about EDs, communication, practical skills, treatment engagement, and recovery. Participants completed demographics and were assessed using EDSIS, CASK, and DASS-21 for caregiver burden, skills, and distress, respectively, at program completion and 3-month follow-up. Feedback on the program and modules was also collected. Most carers (65%; 82/126) completed the core module of the program, which is on par with other online learning programs. Nearly half of program completers responded to the 3-month follow-up (n = 39). On average, carers rated the program as relevant and useful and found the information validating and easy to understand, albeit a few carers found the program time-consuming and technically challenging. Intent-to-treat (ITT) linear mixed models demonstrated the preliminary effectiveness of the program for improving carer burden and skills, although the change in carer distress was non-significant. Results of this case series evaluation suggest SupportED is an acceptable and feasible program for carers and may improve burden and support skill development. Although the online, self-paced format was highly rated, small improvements to improve acceptability were suggested. Reasons for a lack of impact on carer distress are discussed. This article describes a case series evaluation of "SupportED," an online skills-based support program for families, carers, and supporters of people with lived experience of an eating disorder. This is the first online carer support program that is designed to be inclusive of all carer types (e.g., partners, siblings) for all eating disorder presentations. Findings suggest the program's suitability and helpfulness for reducing carers' load and bolstering skills and knowledge.

Management Strategies for Blood Pressure Control in Elective Pre-Surgery Patients: Focusing on Family Support Improvement, Anxiety Control, and Caring Behavior in Receiving Room

Surgery can be generally defined as a medical action that causes a stressor on a person's integrity, resulting in a stress response, both psychological and physiological. It is totally normal to feel anxious before surgery. This study aimed to identify the management strategies for blood pressure control in elective pre-surgery patients, focusing on family support improvement, anxiety control, and caring behavior. It was an analytical-correlational study which the total samples were 130 respondents at the receiving room of Malang Lavalette Hospital. The data analysis confirmed significant relationships in elective pre-surgery patient care. Family support and nurses' caring behavior had notable impacts on patient anxiety with p values of 0.000 and 0.034 respectively. Moreover, family support and anxiety, as well as anxiety and blood pressure, demonstrated significant associations with p values of 0.000. Notably, family support exhibited a direct effect on blood pressure (0.568) greater than its indirect effect through anxiety (0.453), summing to a total effect of 1.021. Similarly, nurses' caring behavior had a direct effect on blood pressure (0.1225) exceeding its indirect effect through anxiety (0.1099), resulting in a total effect of 0.2324. The researchers found that there was an effect of elective pre-surgery patients management strategies on blood pressure control in terms of increasing family support, anxiety control and caring behavior in receiving room.

Providing support for family carers: social workers describing their professional role

ABSTRACT Family carers have a growing significance, and they are increasingly regarded as clients in need of support. In Sweden, the municipal support for family carers is often provided by family care advisors. However, there is a lack of knowledge regarding this relatively new area of social work practice. This article aims to explore how family care advisors describe their work and construct their professional role in relation to family carers. The empiric material derives from a research circle, a form of focus group interview, with family care advisors. The theoretical framework is based on the concept categorical pair, where the description of the family care advisors’ work includes constructing themselves as professionals and the family carers as clients. Four themes have emerged in their stories: being neutral, being allies, being a container, and being an educator. The findings show how the family care advisors’ relationship with the family carers is described as being simultaneously personal and professional: a form of professional friendship with a delicate balancing act. The family care advisors also view their neutral role, with no power to exercise authority, as important and required. Family carers that are perceived as difficult are described from a paternalistic perspective, thus needing to be educated by the family care advisors. Accordingly, when the family care advisors construct their professional role, they also construct family carers, which includes implicit moral notions of a ‘good carer’.

THE ROLE OF SOCIAL ENTERPRISE ORGANIZATIONS IN SUPPORTING FAMILY CARERS OF OLDER PEOPLE LIVING WITH DEMENTIA

Abstract This paper aims to present findings from a primary qualitative study that explored the role of social enterprise organisations (SEOs) in delivering co-produced support for family carers of older people living with dementia (PLWD). Defined in the UK, as businesses with a social or environmental purpose, SEOs are increasingly recognised as occupying a unique space in the landscape of adult social care delivery. In Wales, devolved legislation requires public bodies to collaborate with SEOs - this provision is intended to create a mixed economy of care with co-produced user-led services. To date, however, there is little firm evidence of SEOs delivering co-produced care solutions within the policy framework in Wales, which can be understood to be particularly permissive of SEO involvement, or of how the sector is involved in the delivery of support for family carers of older PLWD. Findings gathered through five focus groups with a purposive sample of family carers, and SEO care providers in South Wales, show how co-produced family carer support programmes are navigated and enacted, as well as how the individual agency of service providers, PLWD, and their carers are involved in these processes. Adopting an ethics of care approach, and utilising reflexive thematic analysis, key themes identified include competition between and within organisations, parochialism, capacity, and organisational barriers. This study highlights implications for policy and practice related to the rhetoric of co-produced support services for family carers, SEOs’ views on delivering that support, and family carers’ experiences of navigating and receiving SEO-delivered services.

Stakeholder perspectives on short-stay joint replacement programs: results from a national cross-sectional study

BackgroundThe capacity to meet anticipated growth in joint replacement demand requires safe, efficient models of care. While short-stay joint replacement programs are being used internationally, they have not been widely implemented in many countries. Importantly, the critical challenges that need to be addressed ahead of large-scale program implementation remain unclear. This study aimed to investigate stakeholder perspectives on short-stay joint replacement programs, including perceived barriers and enablers to implementation and sustainability, and understand current practices in Australia.MethodsFour key stakeholder groups were invited to participate in this national study: (1) health professionals who provide joint replacement care; (2) hospital administrators involved in joint replacement provision; (3) patients with recent joint replacement; and (4) carers of people with recent joint replacement. Data on perceived feasibility (0 (not at all feasible) − 10 (highly feasible), appeal (0 (not at all appealing) − 10 (highly appealing), current practices, and barriers and enablers were collected using visual analogue scales, multiple response option and open-ended questions, via an online platform. Descriptive analysis and free-text content analysis was undertaken.ResultsData were available from 1,445 participants including 360 health professionals, 20 hospital administrators, 1,034 patients, and 31 carers. Short-stay program implementation was considered moderately feasible by health professionals (median 6, interquartile range (IQR) 3–8) and hospital administrators (median 5, IQR 5–6). Short-stay programs were moderately appealing to patients (median 7, IQR 2–9) but of little appeal to carers (median 3, IQR 1–7). Prominent implementation barriers included perceived limited appropriateness of short-stay programs, inadequate home supports, and issues around reimbursement models or program funding. Not having daily physiotherapy access and concerns about pain and mobility at home were common barriers for patients. Concern about patients’ ability to manage daily activities was the most common barrier for carers. Access to post-discharge services, better funding models, improved staffing, and consistent protocols and national care standards were prominent enablers.ConclusionsThis national study has uniquely captured multiple stakeholder perspectives on short-stay joint replacement programs. The findings can guide future quality improvement and implementation initiatives and the development of resources to best support patients, carers, clinicians, and hospitals.

Characteristics, correlates of burden and support service use of a help-seeking carers of loved ones with an eating disorder.

Carers, vital in the care of individuals with an eating disorder (ED), experience substantial caregiving burden and unmet needs. This study aims to identify factors which contribute to the burden experienced by carers of a loved one with an ED and their support service usage. Carers (N=245) completed an online questionnaire assessing demographic, carer-specific, individual and ED factors. Multivariate relationships with caregiving burden were examined using forwards elimination to produce a parsimonious model of carer burden. The final model, consisting of caregiving factors (e.g., relationship type, skills), carer mental health) and loved one wellbeing (i.e., purging symptoms, depression/self-harm/suicidality) explained a large proportion (62%) of the variance in carers' burden. Carer mental health, caregiving skills and relationship type (e.g., parent, spouse, sibling) were key predictors of carers' burden. Nearly a third of carers had not used any carer support services, yet most carers expressed an interest in such services. Caregiving burden is determined by experiences and skills of the carer as well as the person they are caring for. Carer support services should continue to address the general wellbeing of carers and caregiver skills. Research into the barriers to carer support uptake is needed.

Caring for persons with Dementia: a qualitative study of the needs of carers following care recipient discharge from hospital

BackgroundA randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers’ perceptions of their own and their care-recipients’ needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge.MethodsThe CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient’s life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer’s perception of the care recipient’s future needs, carer’s current needs, and a proposed current and future care plan. The researcher’s philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants’ reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied.ResultsThirty carer participants were included. Analysis identified three major themes: Carers’ perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions.ConclusionThe CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer.Trial RegistrationAustralian Clinical Trials Registration: (ACTRN12619001187134).

Research Translation and Impact of a Program of Work to Support Carers of a Person with Depressive or Anxiety Symptoms

In 2018, Every Mind responded to a lack of research into supports for carers of a person with depressive or anxiety symptoms, by designing, piloting, and implementing an online support program targeting these carers. Previous publications have documented several benefits of this research, such as the program’s feasibility, acceptability, and trends in efficacy. Although these results are promising, a deeper examination of the societal and economic significance of the research is warranted. The present study utilised the Framework to Assess the Impact from Translational Health Research (FAIT) and examined program documentation to retrospectively assess the benefits, costs and lessons learned from the Minds Together research. The results revealed that the benefits were widespread, particularly in capacity building. The economic analysis found a return on investment of over $80,000 AUD 2022. The study also emphasised the role of research centre staff in communicating and disseminating research findings. The retrospective application of FAIT to the Minds Together program proved feasible and has provided valuable insights. The present study highlights the comprehensive benefits of Minds Together beyond the trial outcomes reported in previous studies and emphasises the advantages of using health economics methodologies to examine the impacts of research targeting informal carers.

Adaptive interviewing for the inclusion of people with intellectual disability in qualitative research.

Historically the voices of people with intellectual disability have been occluded by barriers imposed by research practice. More recently, adaptive research approaches have been proposed to enhance the inclusion of people with intellectual disability in qualitative research. This article presents anadaptive interviewing approach employed with five people ageing with intellectual disabilities in rural South Australia. The interviews were conducted within a broader participatory action research project in which tools and resources were co-designed for post-parental care planning. We describe our adaptive interviewing approach incorporating multiple methods: (i) responsive communication techniques; (ii) the inclusion and support of family carers; (iii) visual tools; (iv) walking interviews. Findings contribute knowledge about how an adaptive interview approach supports the participation of people with an intellectual disability in qualitative research.

World Alzheimer Report 2022 ‐ How strong are global health systems: Lessons learned and case studies from across the globe

AbstractBackgroundEach year Alzheimer’s Disease International (ADI) publishes a World Alzheimer Report, a comprehensive source of global health and socioeconomic information on dementia. The theme of ADI’s 2022 World Alzheimer Report was post‐diagnostic support ‐ aiming to provide a global perspective on treatment, care and support models, barriers to access and areas of best practice, and the role of policy in strengthening health systems.MethodWe conducted 3 global surveys; with people living with dementia in 41 countries, informal carers across 68 countries, and health & long‐term care professionals in 69 countries. 215 global experts contributed 119 expert essay and case studies. We also highlighted commentary and perspectives from people living with dementia and carers.ResultKey themes include a lack of access to post‐diagnostic support which impacted well‐being and health outcomes of families and professionals. 45% of people with dementia in lower‐ and middle‐income countries (LMICs) and 37% in high‐income countries (HICs) said they had not been offered support after their diagnosis. 66% of people with dementia did not have a personalised care plan. 54% of informal carers and 37% of professionals reported being stressed often or all the time. Case studies indicated stigma remains a major barrier and that care pathways are not clear or integrated – and often not culturally appropriate to ensure proper access to treatment and care. Carers and professionals expressed the need for better education and training. There were also areas of best practice to share.ConclusionHealth and long‐term care systems must be strengthened in order to provide treatment, care and support of people living with dementia and their carers. National dementia plans provide a framework, but don’t always guarantee access. Stigma must be challenged and person‐centred care that is culturally appropriate, gender inclusive, coordinated and accessible must become the norm. Support for carers must be prioritised and education and training must be improved and expanded. There are radical differences both between and within countries in education, acculturation, access to services, family responsibilities, and ability to mobilise resources. Understanding how these differences shape dementia care practice is crucial for developing appropriate dementia care policies.

Clinical effectiveness of the NIDUS randomised control trial of a tailored, goal‐focused intervention for increasing goal attainment in people living with dementia and their family carers

AbstractBackgroundMost people living with dementia want to remain living in their own homes and are supported to do so by family carers. We have co‐produced, with family carers of people with dementia and health and social care professionals, a psychosocial intervention (NIDUS‐family). NIDUS‐family is the first fully manualised intervention that is tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals.MethodA randomised, two‐arm, single‐blind, multi‐site clinical trial involving 302 people living with dementia‐family carer dyads. Dyads were randomised 2:1 to receive the NIDUS‐family intervention with usual care (n = 204) or usual care alone (n = 98). The intervention group received over 1 year, 6‐8 video call or telephone sessions (or face to face if COVID‐19 restrictions allowed) in the initial 6 months, followed by telephone follow‐ups every 1‐2 months to support implementation, with a trained facilitator. We will evaluate the effect of NIDUS‐family and usual care on attainment on goals set by family carers towards the care recipient living as well as possible at home, as measured by Goal Attainment Scaling (GAS), compared to usual care alone at 12‐month follow‐up. Secondary outcomes measures include functioning, neuropsychiatric symptoms of care recipients, time remaining living at home and care costs, and family carer mood, quality of life and reported abusive behaviours.ResultThe trial recruited to target, with good adherence to the intervention (85% fully adherent) and trial retention to date (87% at 6‐month follow‐up). The trial’s 12 month follow up data will be completed in early May 2023 and results will be analysed and ready to share by July 2023.ConclusionOur intervention, which we adapted to include remote delivery prior to commencement due to the COVID‐19 pandemic, aims to address barriers to living as well and as independently as possible. If effective, NIDUS‐family is potentially scalable to benefit many people living with dementia and their family carers.

Typologies of caregiving: Understanding support needs of carers across four continents

AbstractBackgroundCaregivers play an essential role in supporting people living with Alzheimer’s disease globally. Cross‐country research on caregivers’ experiences of coping is a prerequisite to developing useful trans‐cultural guidelines for support organisations. While some coping strategies of caregivers globally have been identified, these are neither well understood or elaborated, nor linked effectively into carer support offerings.MethodsIn partnership with Alzheimer’s Disease International (ADI) and Roche, we conducted in‐depth qualitative interviews with photo‐elicitation with 34 caregivers from UK, US, Brazil, and South Africa to understand critical factors in coping during and after the pandemic. Inductive narrative analysis of data and participant generated images coded to dominant themes (Relationships and Caring role) were developed with input from global and national charity and industry sectors.ResultsWe uncovered four caregiving styles: Empaths used emotion‐focused strategies to construct their caring role ('put yourself in that person’s shoes’). They tended to develop strong coping skills, but needed psychosocial support and time specific information. Organisers used problem‐focused strategies and sought information and training early on ('I’m a pretty good expert now’). They developed strong narratives of organisation, advocacy and expertise. Non‐identifiers managed some aspects of the caring role but felt isolated and lacked knowledge and expertise ('do everything I can…there’s nobody else’). They sought others to manage disease related support. Reluctants struggled with unwanted caring duties ('I didn’t sign up for this’). They needed support in coming to terms with their loved one’s diagnosis and professional help with the day‐to‐day caring role.ConclusionOur findings highlight the need for tailored user‐driven support offerings, that begin with the individual carer’s experiences and needs. Our typology will be used in the communication and development of findings and best practice guidelines to inform charities and policy makers about cost effective ways of tailoring support to fit individual carer circumstances globally.

P102: Supporting Informal Carers to Undertake Regular Physical Activity from Home: a Co-design and Prototype Development Study of a novel app, “CareFit”

Background:Informal carers (unpaid family members and friends), are critical to millions worldwide for the ongoing delivery of health and well-being needs. However, the physical and mental wellbeing of caregivers is often poor including low levels of physical activity, frequently owed to contributing factors such as lack of time, lack of support and motivation. Thus, accessible evidence-based tools to facilitate physical activity for carers are urgently needed.Objective:The aim of this study was to co-design and develop a novel mobile app to educate and support carers in the undertaking of regular physical activity. This is achieved via integration of the transtheoretical model of behaviour change and UK physical activity guidelines across 8 weeks of use.Methods:We co-designed a mobile app, “CareFit,” by directly involving caregivers, health care professionals, and social care professionals in the requirements, capturing, and evaluation phases across a number of Agile Scrum development sprints. Requirements for CareFit were grounded in a combination of behavioural change science and UK government physical activity guidelines.Results:Participants identified different barriers and enablers to physical activity, such as a lack of time, recognition of existing activities, and concerns regarding safely undertaking physical activity. Requirements analysis highlighted the importance of simplicity in design and a need to anchor development around the everyday needs of caregivers (eg, easy-to-use video instructions, reducing text). Our final prototype app integrated guidance for undertaking physical activity at home through educational, physical activity, and communication components.Conclusions:Integrating government guidelines with models of behavioural change into a mobile app to support the physical activity of carers is novel and holds future promise. Integrating core physical activity guidelines into a co-designed smartphone app with functionality such as a weekly planner and educational material for users is feasible acceptable and usable. Here we will document the latest developments on the project including an ongoing national study currently taking place in Scotland to test the prototype with 50 carers.

The Sustainable Personalised Interventions for Cognition, Care, and Engagement (SPICE) Program: A twelve week reablement intervention for people with dementia and carers

AbstractBackgroundThere is a need for integrated and effective reablement programs to promote the quality of life of people with dementia and their carers.MethodThe Sustainable Personalised Interventions for Cognition, Care, and Engagement (SPICE) Program is currently being evaluated in Canberra, Australia. SPICE is a multicomponent active therapeutic intervention delivered by allied health professionals over twelve weeks. The five components are: 1) cognitive stimulation therapy (CST); 2) carer education, support and capacity building; 3) physical activity; 4) Care of People with dementia in their Environments (COPE) program; and 5) dietary assessment and advice. Six people with dementia and their six carers participate in a small group twice per week for the CST, carer, and physical activity components, while COPE and dietary assessment and advice are completed as a dyad. Pre‐ and post‐intervention outcome measures on quality of life, neuropsychiatric symptoms, cognitive function, and physical function are being collected, in addition to a program evaluation interview. After four groups have completed the protocol, the SPICE waiting‐list pilot trial will finish data collection in early 2024. Here we report on the first group to complete the program.ResultAttendance to the in‐person components of the program were 94% for people with dementia and 92% for carers. All participants completed the COPE program, and compliance with the dietary appointments was 94%. Quantitative outcome measures suggest benefits, but inferences cannot be drawn due to small sample size. Both people with dementia and carers reported high program satisfaction and perceived benefits, supporting the feasibility of the intervention. The program was rewarding for all participants, and carers felt the strategies and lessons learned had immediate benefits. The social aspects, inclusiveness, and group cohesiveness were key drivers of their satisfaction with the program.ConclusionThe results from the first group to complete the SPICE program shows that an intensive, multicomponent active therapeutic program is feasible and considered valuable for people with dementia and their carers. Findings from the pilot trial are required to confirm the results from the first group to potentially support a randomised controlled trial.

Navigating the Australian child protection system: The importance of formal and informal support for carers to effectively provide care to children in out‐of‐home care

AbstractChildren in out‐of‐home care (OOHC) are a vulnerable group who often experience poorer outcomes than their peers who are not in OOHC. In 2020–2021, there were approximately 46 200 children in OOHC in Australia, with 91% in a family setting with foster or kinship carers. Data from other countries show similar patterns indicating that foster and kinship carers provide care for most children in OOHC. To effectively provide children in OOHC with the care they require, including safety, stability, and connection, the carers need a social support system that equips them to meet the needs of these vulnerable children and to prevent the breakdown of placements. The study presented in this paper draws on social constructivist and critical perspectives to examine the formal and informal social support available to carers using data from a qualitative study investigating OOHC in Queensland, Australia. Our sample is 113 carers, caring for 194 children aged 1–12 years old. We find lack of integration across formal support systems and failure to recognize the invisible workload undertaken by carers are two key challenges faced by carers. Upskilling and stabilizing the child protection work force, as well as better training for carers, is also required. Addressing these issues will enhance the social support systems of carers and improve the safety, stability, and connection of children in OOHC.

S6: Adapting and implementing WHO iSupport among dementia caregivers worldwide: users' perspectives and future development (Session I)

Symposium OverviewThe WHO Global Action Plan against Dementia calls for “at least 75% of member states providing carer support and training by 2025”. In response to the global target, WHO has developed iSupport aiming to provide support for caregivers of people living with dementia. The generic WHO iSupport has been translated and adapted in 39 countries and 37 languages so far. The adapted versions of WHO iSupport are now being implemented worldwide, usually as an online program for caregivers. The feasibility, accessibility, effectiveness and sustainability of the iSupport program in different cultural context is now being explored extensively. This symposium aims to share the up-to-date research findings and lessons learned on the adaptation and implementation process and users’ perspectives from diverse cultural background. It will include seven presentation and be divided into sessions: 3 presentations on Session I and 4 presentations on Session II.Session I: The first presentation will be dedicated to overviewing the development and the progress of adaptation and implementation of WHO iSupport. The second presentation will focus on the adaptation of iSupport in Uganda. The presentation will inform the utility of iSupport in Sub-Sahara Africa. Based on individual semi-structural interview data from Tunisia, the third presentation will highlight that caregivers’ experience and needs are valuable for cultural adaptation of iSupport.Session II: The first presentation will demonstrate how facilitator-enabled iSupport intervention would change the interaction and engagement in learning among Chinese caregivers living in Australia and Greater China. The second presentation will focus on adapting iSupport in Switzerland using a community-based participatory approach. The third presentation will show the potential benefit of raising awareness of the Russian society about dementia after the implementation of iSupport through digital technologies. The fourth presentation will report on the co-design of an adapted version of iSupport for young caregivers.The symposium is expected to inform further development, improvement and implementation of WHO iSupport for diverse cultural background. This will be not only valuable information for participants who are interested in iSupport but also for those (interested in) investigating interventions developed in another cultural setting.

S20: Adapting and implementing WHO iSupport among dementia caregivers worldwide: users' perspectives and future development (Session II)

The WHO Global Action Plan against Dementia calls for “at least 75% of member states providing carer support and training by 2025”. In response to the global target, WHO has developed iSupport aiming to provide support for caregivers of people living with dementia. The generic WHO iSupport has been translated and adapted in 39 countries and 37 languages so far. The adapted versions of WHO iSupport are now being implemented worldwide, usually as an online program for caregivers. The feasibility, accessibility, effectiveness and sustainability of the iSupport program in different cultural context is now being explored extensively. This symposium aims to share the up-to-date research findings and lessons learned on the adaptation and implementation process and users’ perspectives from diverse cultural background. It will include seven presentation and be divided into sessions: 3 presentations on Session I and 4 presentations on Session II.Session I: The first presentation will be dedicated to overviewing the development and the progress of adaptation and implementation of WHO iSupport. The second presentation will focus on the adaptation of iSupport in Uganda. The presentation will inform the utility of iSupport in Sub-Sahara Africa. Based on individual semi-structural interview data from Tunisia, the third presentation will highlight that caregivers’ experience and needs are valuable for cultural adaptation of iSupport.Session II The first presentation will demonstrate how facilitator-enabled iSupport intervention would change the interaction and engagement in learning among Chinese caregivers living in Australia and Greater China. The second presentation will focus on adapting iSupport in Switzerland using a community-based participatory approach. The third presentation will show the potential benefit of raising awareness of the Russian society about dementia after the implementation of iSupport through digital technologies. The fourth presentation will report on the co-design of an adapted version of iSupport for young caregivers.The symposium is expected to inform further development, improvement and implementation of WHO iSupport for diverse cultural background. This will be not only valuable information for participants who are interested in iSupport but also for those (interested in) investigating interventions developed in another cultural setting.

FC18: Can rehabilitation improve functional independence of older people with dementia? A pragmatic randomized controlled trial (RCT) of the Interdisciplinary Home-bAsed Reablement Program (I-HARP)

Objective:The Interdisciplinary Home-bAsed Reablement Program (I-HARP) integrates evidence-based rehabilitation strategies into a dementia-specific person-centred, time-limited, home-based, interdisciplinary rehabilitation package. I-HARP was a 4-month model of care, incorporated into community aged care services and hospital-based community geriatric services. I-HARP involved: 8-10 individually tailored home visits by occupational therapist and registered nurse; 2-4 optional other allied health sessions; up to A$1,000 minor home modifications and/or assistive devices; and three individual carer support sessions. The aim of the study was to determine the effectiveness of I-HARP on the health and wellbeing of people living with dementia and their family carers.Methods:A multi-centre pragmatic parallel-arm randomised controlled trial compared I-HARP to usual care in community-dwelling people with mild to moderate dementia and family carers in Sydney, Australia (2018-22). Assessments of the client’s daily activities, mobility and health-related quality of life, caregiver burden and quality of life were conducted at baseline, 4- and 12-month follow-up. Changes from baseline were compared between groups.Results:Of 260 recruited, 232 (116 dyads of clients and their carers, 58 dyads per group) completed the trial to 4-month follow-up (89% retention). Clients were: aged 60-97 years, 63% female, 57% with mild dementia and 43% with moderate dementia. The I-HARP group had somewhat better mean results for most outcome measures than usual care at both 4 and 12 months, but the only statistically significant difference was a reduction in home environment hazards at 4 months (reduction: 2.29 on Home Safety Self-Assessment Tool, 95% CI: 0.52, 4.08; p=.01, effect size [ES] 0.53). Post-hoc sub-group analysis of 66 clients with mild dementia found significantly better functional independence in the intervention group: 11.2 on Disability Assessment for Dementia (95% CI: 3.4, 19.1; p=.005; ES 0.69) at 4 months and 13.7 (95% CI: 3.7, 23.7; p=.007; ES 0.69) at 12 months.Conclusion:The I-HARP model enhanced functional independence of people with mild dementia only but not significantly in people with moderate dementia, so did not result in better outcomes in the group overall. A different type of rehabilitation model or strategies may be required as dementia becomes more severe.

A Study to Demonstrate Impact of Active Referral of Acute Leukemia Patients and Families to Patient Organization at Diagnosis

Introduction and background Key factors that relate to worse quality of life (QoL) in acute leukemia patients were identified in a global survey conducted by the Acute Leukemia Advocates Network (ALAN) such as age, gender, socioeconomic state, social functioning (e.g., worries about family and friends, feeling isolated, finances, etc.[ Pemberton-Whiteley et al, 2023]). These factors should be taken into consideration by healthcare professionals caring for acute leukemia patients to enable a robust support system. The role of patient organizations (PO) in the care of the patient and family is becoming increasingly important, however, patients are often not aware of the existence of POs and physicians and providers are often unsure of the role and benefits of PO, which then leads to a delay in patients reaching out to POs (for information, education resources, support resources [support groups, online chat, peer-to-peer support, financial support, psychological support, carer support], etc.). To date, there is limited evidence showing the importance of support offered to patients and their families. The ALAN, the Mayo Clinic and a national PO, are conducting a study that aims to assess both retrospectively and prospectively the benefits of active referrals to PO for patients with acute leukemia. Hypothesis We hypothesize that active referrals of adult patients with acute leukemia to PO at diagnosis has a positive impact on patient-reported outcomes and patient experience. Methods Here we present the study methodology that uses a quantitative method via administration of surveys at different timepoints. We plan to do both a retrospective and prospective evaluation of patients (target N=200) previously referred and new patients with a diagnosis of acute leukemia. There are 4 scenarios which are presented in Figure 1. For patients already diagnosed and evaluated at Mayo Clinic (scenarios 3 and 4), we will contact them either via email or portal message to see if they are interested in the study. A study consent form will be sent to them. If they indicate interest and consent, they will be contacted to understand whether they were referred to or sought help from PO around the time of their diagnosis or subsequently, and a questionnaire will be sent to them to assess if PO services helped them in their disease or treatment course. For newly diagnosed patients (scenarios 1 and 2), active referral to PO using PO referral online form will be provided and they will receive study consent form during their first visit at Mayo Clinic. A questionnaire will be sent to them to understand if they used the services from PO after the referral and if yes, to assess if PO services helped them in their disease or treatment course. In addition, every month from diagnosis up to 6 months, all patients who consented to take part in the study will be asked to complete the validated HM-PRO QoL assessment tool (an instrument designed to measure patient-reported outcomes in those with hematological malignancies), to assess QoL and symptoms and change over time. Conclusion This is a pilot study aiming at building evidence on the importance of support offered to patients and their families and demonstrating the impact of an active referral at diagnosis. 1 Pemberton-Whiteley Z, Nier S, Geissler J, Wintrich S, Verhoeven B, Christensen RO, Salek S, Oliva EN, Ionova T, Bradley J. Understanding quality of life in patients with acute leukemia, a global survey. J Patient Cent Res Rev. 2023;10:21-30