Perspectives on dementia care self-learning platform: A focus group study of family and professional caregivers.

OBJECTIVE: To compare perspectives of family and professional caregivers regarding an online self-learning platform. METHODS: Family and professional caregivers were interviewed separately. A thematic analysis was conducted with 12 family caregivers and 13 professional caregivers of people living with dementia in Macao using six semi-structured focus group interviews. RESULTS: Family and professional caregivers had different perspectives regarding the application of online learning program Four main themes emerged from the focus groups, including similarities and differences, namely 1) Need for services; 2) Accessibility to services; 3) Barriers to online learning; 4) Adjustments to the platform. CONCLUSIONS: The psychological assurance offered by an online learning program is imperative to the well-being of family caregivers. By identifying the gap between the needs and abilities of family caregivers and those imagined by professional caregivers, it allows for the development of support programs and interventions tailored to meet the specific needs of family caregivers.

Social support during youth concussion recovery.

PURPOSE: We explored the lived experience of high-school aged girls receiving social support during concussion recovery to better understand (1) how they define meaningful social support and barriers/facilitators to receiving it; (2) who provides that support; and (3) the role of peers. METHODS: In person, semi-structured interviews were conducted with 10 girls (aged 14-19 years) with a personal history of concussion. RESULTS: Close friends, youth with personal history of concussion, and parents were identified as key providers of meaningful social support during concussion recovery. Participants identified specific examples of support provided by each group. Close friends built a sense of social inclusion that mitigated feelings of social isolation. Youth with a personal history of concussion used their lived experiences to communicate empathy and validate the participant's challenges. Parents assisted with practical challenges (e.g. accessing accommodations) by leveraging their "adult power". Participants identified that lack of understanding of their lived experiences was a key barrier to receiving support. They proposed solutions focused on education initiatives highlighting personal accounts from youth with concussion, and specific examples of how peers can help. CONCLUSIONS: Fostering social support may require strategies tailored to each group of key providers as they mitigate different challenges in recovery.

Culturally Adapting the World Health Organization Digital Intervention for Family Caregivers of People With Dementia (iSupport): Community-Based Participatory Approach.

BACKGROUND: Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based digital program developed by the World Health Organization to provide education and support for the informal everyday care of people living with dementia. OBJECTIVE: Our study aims to describe in detail the cultural adaptation process of iSupport in Switzerland. We specifically focused on the participatory strategies we used to design a culturally adapted, Swiss version of iSupport that informed the development of the desktop version, mobile app, and printed manual. METHODS: We used a mixed methods design, with a community-based participatory approach. The adaptation of iSupport followed the World Health Organization adaptation guidelines and was developed in 4 phases: content translation, linguistic and cultural revision by the members of the community advisory board, validation with formal and informal caregivers, and refinement and final adaptation. RESULTS: The findings from each phase showed and consolidated the adjustments needed for a culturally adapted, Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (eg, from "lesson" to "chapter" and from "suffering from" dementia to "affected by" dementia), resources (hyperlinks to local resources for dementia), contents (eg, from general nonfamiliar scenarios to local and verisimilar examples), graphics (eg, from generalized illustrations of objects to human illustrations), and extra features (eg, a glossary, a forum session, and a read-aloud option, as well as a navigation survey). CONCLUSIONS: Our study provides evidence on how to culturally adapt a digital program for informal caregivers of people living with dementia. Our results suggest that adopting a community-based participatory approach and collecting lived experiences from the final users and stakeholders is crucial to meet local needs and to inform the further development, testing, and implementation of digital interventions in a specific cultural context.

Adapting the World Health Organization iSupport Dementia program to the Indonesian socio-cultural context.

Background: Providing care for people with dementia (PwD) without sufficient understanding of the condition might negatively affect the wellbeing of the caregivers, given the lengthy care and progressive nature of the disease. The iSupport for dementia developed by World Health Organization (WHO) is a self-administered training manual for caregivers of PwD, adaptable to local cultures and contexts. This manual needs translation and adaptation to produce a culturally appropriate version for use in Indonesia. This study reports the outcomes and lessons learnt from our translation and adaptation of iSupport content into Bahasa Indonesia. Methods: The original iSupport content was translated and adapted using the WHO iSupport Adaptation and Implementation Guidelines. The process included forward translation, expert panel review, backward translation, and harmonization. The adaptation process included Focus Group Discussions (FGD), involving family caregivers, professional care workers, professional psychological health experts, and Alzheimer's Indonesia representatives. The respondents were asked to express their opinions about the WHO iSupport program, which comprises five modules and 23 lessons covering well-established topics on dementia. They were also asked to suggest improvements and their personal experiences compared to the adaptations applied in the iSupport. Results: Two experts, 10 professional care workers, and eight family caregivers participated in the FGD. Overall, all participants had positive views of the iSupport material. The expert panel identified the need to reformulate definitions, recommendations, and local case studies to fine-tune the original contents to local knowledge and practices. Based on the feedback in the qualitative appraisal, several improvements regarding the language and diction, additional relevant and concrete examples, personal names and cultural habits, and customs and traditions were addressed. Conclusions: The translation and adaptation of the iSupport into the Indonesian context have shown some changes needed to make the iSupport content culturally and linguistically appropriate for Indonesian end users. In addition, given the broad spectrum of dementia, various case illustrations have been added to improve the understanding of care in particular situations. Future studies are needed to evaluate the efficacy of the adapted iSupport in improving the quality of life of PwD and their caregivers.

Improving the lives of ethnically diverse family carers and people living with dementia using digital media resources - Protocol for the Draw-Care randomised controlled trial.

Objectives: Ethnically diverse family carers of people living with dementia (hereafter carers and people with dementia) experience more psychological distress than other carers. To reduce this inequality, culturally adapted, multilingual, evidence-based practical assistance is needed. This paper details the Draw-Care study protocol including a randomised control trial (RCT) to test the effectiveness of a digital intervention comprising a multilingual website, virtual assistant, animated films, and information, on the lives of carers and people with dementia in Australia. Methods: The Draw-Care intervention will be evaluated in a 12-week active waitlist parallel design RCT with 194 carers from Arabic, Cantonese, Greek, Hindi, Italian, Mandarin, Spanish, Tamil, and Vietnamese-speaking language groups. Our intervention was based on the World Health Organization's (WHO) iSupport Lite online carer support messages and was co-designed with carers, people with dementia, service providers, and clinicians. Culturally adapted multilingual digital resources were created in nine languages and English. Results: In Phase I (2022), six co-design workshops with stakeholders and interviews with people with dementia informed the development of the intervention which will be trialled and evaluated in Phases II and III (2023 and 2024). Conclusions: Digital media content is a novel approach to providing cost-effective access to health care information. This study protocol details the three study phases including the RCT of a co-designed, culturally adapted, multilingual, digital intervention for carers and people with dementia to advance the evidence in dementia and digital healthcare research and help meet the needs of carers and people with dementia in Australia and globally.

Adaptation of an eHealth Intervention: iSupport for Carers of People with Rare Dementias.

'iSupport' is an online psychoeducation and skills development intervention created by the World Health Organisation to support people with dementia. This project adapted iSupport for carers of people with rare dementias (iSupport RDC), creating a new resource to support the health and wellbeing of this underserved population. The adaptation involved three phases: (1) Co-design methods to generate preliminary adaptations; (2) Analysis of phase one findings informing adaptations to iSupport to develop; iSupport RDC; (3) Post-adaptation survey to ascertain participant agreement with the adaptations in iSupport RDC. Fourteen participants contributed, resulting in 212 suggested adaptations, of which 94 (92%) were considered practical, generalisable, and aligned with iSupport principles. These adaptations encompassed content and design changes, including addressing the challenges of rare dementias (PCA, PPA, LBD, and FTD). iSupport RDC represents a significant adaptation of the WHO iSupport intervention. Its tailored nature acknowledges the unique needs of people caring for someone with a rare dementia, improving their access to specialised resources and support. By extending iSupport to this population, it contributes to advancing dementia care inclusivity and broadening the understanding of rare dementias. A feasibility study is underway to assess iSupport RDCs acceptability, with prospects for cultural adaptations to benefit carers globally.

Cultural adaptation of the iSupport online training and support programme for caregivers of people with dementia in Castilla y León, Spain.

BACKGROUND: E-learning has shown to be an effective intervention in helping informal caregivers of people living with dementia. It has the potential to reach people living in remote areas, increasing service coverage. As a response to the demographic context in Spain associated with a higher percentage of ageing, depopulation, and the complexities of health service delivery in rural areas, this paper describes the cultural adaptation and co-design of the iSupport online training and support programme for Castilla y León, Spain, as a potential e-health intervention to mitigate these constraints. METHODS: The translation and cultural adaptation were performed following the WHO guidelines, with some adaptation due to the cultural context of Spain. Three focus groups were conducted with informal caregivers, health professionals, and a group of experts on cognitive impairment and dementia. The co-design process was performed as a Patient and Public Involvement activity with three groups consisting of people living with dementia, informal caregivers, rural population and experts on technology and dementia. RESULTS: A total of 435 suggestions were proposed for adaptation associated with erroneous terminology, rewording text/writing, grammatical or punctuation marks errors, and repeated information or need for additional content. Several recommendations were exposed during the co-design process: preference for interactive material such as videos or images, a forum to receive feedback from health care professionals and to leave satisfaction comments, availability in multiple platforms (e.g., tablet, laptop, mobile), slide format for information presentation, and availability to edit letter size and background colours. CONCLUSIONS: A culturally adapted version of the iSupport was developed for Castilla y León, Spain. The need for modification of words and expressions, information links to local resources websites, adjustments of characters' names and caregivers' scenarios, and additional content to some sections were recommended. Suggestions for the design should be taken into account for further adapted versions and platform developments.

Help-Seeking in Informal Family Caregivers of People with Dementia: A Qualitative Study with iSupport as a Case in Point.

Supportive measures and training interventions can improve the care of people with dementia and reduce the burden on informal caregivers, whose needs remain largely unmet. iSupport is an evidence-based online intervention developed by the World Health Organization to provide support and self-guided education to informal family caregivers of people with dementia. This qualitative study explored barriers and facilitators in the access and use of supportive measures for family caregivers of people with dementia living in Southern Switzerland (Ticino). We conducted five focus groups and explored experiences, beliefs, and attitudes toward seeking help (SH), and used thematic analysis to identify key themes. Participants (N = 13) reported a general reluctance to SH. We identified four main barriers to SH: high level of burden; sense of duty; fear of being misunderstood by others; and difficulty in reaching information. We also identified facilitators of help seeking behaviors and unveiled the need of caregivers to be assisted by a dementia case manager to facilitate access to support resources. Local services and interventions should be adapted to caregivers' needs and expectations, with the aim of facilitating the acceptance of, access to, and service integration of existing and future support measures, including iSupport.

Effects of web-based training for carers in old age homes using WHO-iSupport for dementia, as a training tool - A mixed-method study.

WHO recognized Dementia as public health priority and developed iSupport, a knowledge and skills training program for carers of people living with Dementia. This Mixed-Method study assessed the effectiveness of web-based training sessions among carers at old age homes in and around Puducherry, India, using WHO-iSupport for dementia hardcopy manual as a training tool. We registered the clinical trial protocol with Clinical Trial Registry-India (CTRI), CTRI/2020/11/029154. We determined the change in 35 carer's knowledge and attitude following the training sessions using pre and post-test questionnaires quantitatively. Further, we explored their learning experience by conducting eight descriptive one-to-one telephonic interviews. Due to the COVID-19 pandemic, we conducted this study online. i.e., obtained virtual consents, pre and post-test using Google forms, and training sessions through a webbased platform. We divided carers into groups where each carer attended two training sessions, and each session lasted for 2 h. Training sessions improved the carer's knowledge from a pre-test score of Median (IQR) 12 (9, 15) to a post-test score of 17 (16, 20) and attitude score from 30 (27.3, 34.8) to 33.5 (30.3, 39) in post-test. They perceived that the training sessions were helpful as they gained knowledge on dementia care, and their attitude has changed optimistically towards people living with Dementia. These findings suggest that web-based training has an effect and indicates the need for training among carers in various old age homes for betterment in providing care.

Cultural adaptation of World Health Organization iSupport for Dementia program for Chinese-Australian caregivers.

BACKGROUND: Home-based dementia care is common in the Chinese-Australian community. However, dementia education programs for Chinese-Australians in the language of their choice are scarce. The World Health Organization has developed iSupport for Dementia, an online education program for informal caregivers. Cultural adaptation of the program for Chinese-Australian caregivers is an opportunity to address this gap in caregiver support. AIM: The aims of the study were (1) to understand stakeholders' perspectives on the cultural and linguistic appropriateness of the Chinese iSupport for Dementia content and design and (2) to explore factors affecting the future implementation of the Chinese iSupport program in Australia. METHODS: A qualitative descriptive design was applied to address the aims of the study. Focus group discussions with Chinese-Australian caregivers and community aged care workers were conducted to collect data. Thematic analysis was used to analyse data. RESULTS: In total, six focus groups were conducted with 18 Chinese-Australian caregivers and 17 care workers. Six themes were identified and described as follows: (1) appropriateness of the Chinese iSupport content; (2) acceptability of the online Chinese iSupport design; (3) motivations to engage in the iSupport program; (4) desire to interact with peers and professional facilitators; (5) concerns about program accessibility; and (6) the need to extend the iSupport program to care workers. CONCLUSIONS: Engagement with Chinese-Australian caregivers and care workers will inform further revisions of the Chinese iSupport program contents to ensure the program is culturally congruent to Chinese-Australian caregivers. Factors affecting the implementation of the program identified in the study will be considered in the intervention phase of the program.

Empowering Dementia Carers With an iSupport Virtual Assistant (e-DiVA) in Asia-Pacific Regional Countries: Protocol for a Pilot Multisite Randomized Controlled Trial.

BACKGROUND: Dementia is a global public health priority with an estimated prevalence of 150 million by 2050, nearly two-thirds of whom will live in the Asia-Pacific region. Dementia creates significant care needs for people with the disease, their families, and carers. iSupport is a self-help platform developed by the World Health Organization (WHO) to provide education, skills training, and support to dementia carers. It has been adapted in some contexts (Australia, India, the Netherlands, and Portugal). Carers using the existing adapted versions have identified the need to have a more user-friendly version that enables them to identify solutions for immediate problems quickly in real time. The iSupport virtual assistant (iSupport VA) is being developed to address this gap and will be evaluated in a randomized controlled trial (RCT). OBJECTIVE: This paper reports the protocol of a pilot RCT evaluating the iSupport VA. METHODS: Seven versions of iSupport VA will be evaluated in Australia, Indonesia, New Zealand, and Vietnam in a pilot RCT. Feasibility, acceptability, intention to use, and preliminary impact on carer-perceived stress of the iSupport VA intervention will be assessed. RESULTS: This study was funded by the e-ASIA Joint Research Program in November 2020. From January to July 2023, we will enroll 140 dementia carers (20 carers per iSupport VA version) for the pilot RCT. The study has been approved by the Human Research Committee, University of South Australia, Australia (203455). CONCLUSIONS: This protocol outlines how a technologically enhanced version of the WHO iSupport program-the iSupport VA-will be evaluated. The findings from this intervention study will provide evidence on the feasibility and acceptability of the iSupport VA intervention, which will be the basis for conducting a full RCT to assess the effectiveness of the iSupport VA. The study will be an important reference for countries planning to adapt and enhance the WHO iSupport program using digital health solutions. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12621001452886; https://tinyurl.com/afum5tjz. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/33572.