Caregiver Acceptance Research Articles

Telephone-Based Acceptance and Commitment Therapy for Caregivers of Persons with Dementia: Results of a Randomized Controlled Trial

ABSTRACT Objectives Family caregivers of persons with dementia (PwD) experience high levels of distress. We used a randomized-controlled trial to investigate the effects of telephone-based acceptance and commitment therapy (tbACT) for family caregivers. Methods Caregivers were randomly allocated to an intervention group (tbACT, n = 41) or an untreated control group (CG, n = 40). The intervention consisted of eight weekly sessions of tbACT. Depression and anxiety (primary outcomes), physical symptoms, pre-death grief, care-related thoughts, acceptance (secondary outcomes), quality of life, coping and well-being (well-being/coping outcomes) were assessed pre- and post-assessment. A 6-month follow-up was conducted. Results Compared to CG participants, tbACT participants had at post-assessment significantly lower depressive symptoms; fewer physical symptoms (rheumatic pain); better physical health; more resource utilization (coping with daily hassles, social support); better coping with the care situation and better emotional well-being. During the six-month follow-up, tbACT participants showed less pre-death grief, fewer physical symptoms, and more utilization of resources related to coping with daily hassles. Conclusions tbACT is a feasible and promising psychotherapeutic intervention for family caregivers of PwD. Because of small sample size our results are preliminary. Clinical Implications Most of the effects of tbACT were not maintained 6 months after the intervention, suggesting that booster sessions may be helpful.

Acceptance and commitment therapy group protocol for caregivers of anxious youth: an open trial pilot study

Acceptance and commitment therapy group protocol for caregivers of anxious youth: an open trial pilot study

Caregiver acceptance of human papillomavirus vaccine for their female children in Chileka, Blantyre, Malawi

IntroductionMalawi is one of the countries enduring an enormous burden of cervical cancer. Human Papillomavirus (HPV) vaccination offers a feasible and effective tool for reducing the burden. Such a prospect however, is being impeded by low uptake rates of the HPV vaccine in the country. This study, therefore, sought to identify barriers to caregiver acceptance of the HPV vaccine for their female children in Chileka, Blantyre, Malawi and to establish the consequential willingness to vaccinate their children. MethodologyA cross-sectional study was conducted using qualitative methods. We conducted 6 Focus Group Discussions (FGDs) with 4 groups of women and 2 groups of men in 4 villages located in a semi-urban area, Chileka, Blantyre. The guiding questionnaire was designed to draw out two main outcomes: barriers to caregiver acceptance of the HPV vaccine and willingness to vaccinate children. The data was analysed by thematic analysis by an inductive approach using NVivo software version 11. ResultsLack of knowledge on cervical cancer and HPV vaccination coupled with numerous misconceptions are the main barriers discouraging the population from accepting the HPV vaccine. Consequently, there was little desire to get their children vaccinated against HPV. Though responsibility to get the children vaccinated was mainly attributed to women, men argued that they need to have a final say in their children’s vaccination. ConclusionIn the wake of the revealed barriers and low acceptance of the HPV vaccine, it is imperative to organize effective and sustainable awareness programmes for the improvement of the HPV vaccine’s uptake.

The Homeostasis-Enrichment-Plasticity (HEP®) Approach for Premature Infants with Developmental Risks: A Pre-Post Feasibility Study.

Background: The environmental enrichment (EE) framework has inspired several early intervention (EI) approaches. This study evaluated the feasibility, safety, caregiver acceptance, and satisfaction of implementing the HEP Approach intervention, a novel EI model based on the EE paradigm. Outcome measures for motor development, individual functional goals, sensory functions, caregiver-provided environmental affordances, and motivation for movement were examined. Methods: A pre-post-study design examined 18 premature infants (<33 weeks six days gestation) with a corrected age of 4-10 months. A 21-item Likert scale survey assessed the feasibility, safety, acceptability, and satisfaction of implementing the HEP Approach intervention. The Peabody Developmental Motor Scales-2, Test of Sensory Functions in Infants, Affordances in the Home Environment for Motor Development, and Infant Movement Motivation Questionnaire were used for outcomes. The goal attainment scale measured progress toward parent goals. The HEP Approach consisted of 12 one-hour sessions implemented over three months. Results: Most participating parents found the HEP Approach intervention feasible, safe, acceptable, and satisfactory. GAS scores demonstrated significant gains with a mean t-score of 67.75 (SD = 2.00). Results found significant improvement (p ≤ 0.05) in all outcome measures. Conclusions: Results suggest that the HEP Approach intervention is safe, feasible, and acceptable to implement. Outcome measures were meaningful and sensitive in identifying improved motor development, individualized parental goals, sensory functions, caregivers' use of environmental opportunities, and movement motivation in premature at-risk infants. Results suggest further studies on the HEP Approach are feasible, and highlight the potential of this intervention to inspire and guide future research in this field.

Do Ethnic Identity, Familial, and Community Contexts Impact the Association Between Adverse Childhood Experiences and Psychopathology Among Latinx Adolescents?

Few studies have explored the interplay of how individual identity, parental, familial, and contextual factors impact associations between Latinx adolescent adversities and psychopathology. This study aimed to examine whether these factors mediate the relationship between adversities and psychopathology in Latinx youth. Latinx youth (n= 2,411) data from the Adolescent Brain Cognitive Development (ABCD) Study were used to examine path models with adverse childhood experiences (ACEs) as the predictor and either youth- or caregiver-rated internalizing/externalizing scores over 4 timepoints as the outcome (ages 9-13 years). Models examined 3 potential mediators: (1) ethnic identity, (2) familial context (comprising parental monitoring, family conflict, and caregiver acceptance), and (3) community cohesion. Models were conducted separately for internalizing and externalizing symptoms. Greater adversity was associated with greater youth- and caregiver-rated internalizing/externalizing psychopathology over time. Greater adversity was associated with lower family functioning and lower ethnic identity, and greater family functioning was associated with lower psychopathology. Family functioning mediated associations between adversity and psychopathology over time (youth-reported internalizing: 95% CI= 0.012-0.019; youth-reported externalizing: 95% CI= 0.020-0.028). In contrast, there was not strong evidence for ethnic identity and community cohesion mediating associations between adversities and psychopathology over time. Unlike previous studies, ethnic identity did not influence the relationship between ACEs and psychopathology over time. Additional research is needed to identify whether possible tensions rise as Latinx youth acculturate into US culture and achieve optimal levels of ethnic identity formation. Providers need to assess specific Latinx parental and familial contexts that may interfere with youth identity formation.

“Whatever is bad goes back to the woman”: The gendered blame game of sickle cell disease in Malawi and Uganda

Mothers are commonly blamed for the ill-health of their children, and this is well documented in research. However, few studies have considered gendered patterns of blame for hereditary conditions caused by mutations from both parents through dual, shared genetic inheritance. This paper explores the ‘gendering’ of blame in the context of an inherited blood disorder known as sickle cell disease. The findings are drawn from 18 focus group discussions with 117 caregivers of children with sickle cell disease in Malawi and Uganda. Although one mutation from each parent is required for the disease to develop, low awareness about their status as healthy carriers of a sickle cell trait complicated the caregivers' recognition and acceptance of their genetic link to the child's condition. This study demonstrates how fathers and other members of the paternal side of the child's family would deflect blame from their own lineage by directing sole ‘genetic responsibility’ for the child's disease towards mothers. We discuss the implications of gendered blame on household dynamics and healthcare-seeking for children with sickle cell disease in this setting.

Use of Virtual Reality and Augmented Reality Technologies to Support Resilience and Skill-Building in Caregivers of Persons With Dementia: A Scoping Review.

Dementia presents a growing public health challenge with most affected individuals living at home, placing significant responsibility on their caregivers. Various interventions, from traditional support groups and education programs to emerging technologies, and more specifically virtual reality (VR) and augmented reality (AR), aim to enhance caregiver skills. While VR/AR shows promise in educating and fostering empathy among caregivers and healthcare professionals, its overall effectiveness and practicality in older adults and dementia care warrant further exploration. This review aimed to summarize currently available VR and AR interventions tailored for family caregivers of persons living with dementia (PLWD) in home or clinical settings, including their level of effectiveness, and to compile a summary of features that contributed to technology acceptance in family caregivers of PLWD. We conducted a systematic search in OVID PsychInfo, CINAHL, Google Scholar, and ERIC, as well as CADTH's Grey Matters, OpenGrey, National Technical Information Service, OAIster, and Health Quality Ontario, to comprehensively summarize the existing evidence underscoring the role of VR and AR in supporting education, resilience-building, and skills training for family caregivers of PLWD. The search terms were built with the assistance of a research librarian and involved synonyms for VR, AR, and dementia. Two screeners conducted a rigorous screening and data extraction to analyze and summarize findings. Studies were included if they focused on family caregivers engaging in interventions utilizing a three-dimensional VR environment and/or Metaverse for group learning in psychotherapeutic modalities such as psychoeducation, therapy, communication, and skill-building. The primary outcome of the studies was assessing measures of well-being (e.g., quality of life, communication, interaction, personhood) and learning outcomes for caregivers, while the secondary outcomes focused on identifying barriers and facilitators influencing the acceptability of VR/AR among dementia caregivers. Content analysis and descriptive statistics were used to summarize key trends in technology and evidence effectiveness and acceptability. Of the 1,641 articles found, 112 were included, with six articles meeting inclusion for analysis. Studies differed in duration and frequency of data collection, with interventions varying from single events to months-long programs, often employing home-based approaches using VR or online platforms. No study used AR. Usability issues and unclear benefits of use were identified as factors that hinder technology acceptance for dementia caregivers. However, technologies demonstrated engaging user experiences, fostering skill-building, confidence, and competence among caregivers. Positive psychological effects were also observed, facilitated by immersive VR and AR interventions, resulting in improved caregiver empathy and reduced stress, depression, and loneliness. VR and AR interventions for family caregivers ofPLWD show the potential to enhance empathy and skills and reduce stress. Challenges such as technological limitations and user inexperience issues persist. Home-based VR training aligns with caregiver comfort but lacks focus on financial aspects and cultural competencies. Co-design approaches offer solutions by addressing user concerns and promoting end-user engagement or empowerment.

Feasibility and acceptability of an acceptance and commitment therapy for caregivers of dementia: a single arm trial emphasizing adult protection

PurposeCaregivers for older adults play a crucial role in protecting those diagnosed with dementia. These caregivers often experience heightened anxiety, depression and burdens associated with their responsibilities. Sufficient support and efficient coping mechanisms alleviate distress and caregiving burdens, thereby enhancing and protecting adults. Acceptance and commitment therapy (ACT) fosters acceptance of internal experiences and promotes behaviors aligned with personal values. This single-arm pilot study aims to evaluate the feasibility, acceptability and preliminary effects of an online ACT intervention (Online Acceptance and Commitment Therapy Intervention for Caregivers [OACTIC]) on well-being aspects among dementia caregivers, emphasizing the importance of tailored interventions to protect older adults and their caregivers.Design/methodology/approachThe caregiver must be ≥21 years of age (i.e. a parent, spouse, partner, sibling or adult child), or they must be the primary caregiver of older adults with dementia for ≥12 months and have scores that indicate moderate or higher on the scale of anxiety, depression and poor quality of life. Participants received an online-based ACT over six weekly 1-h sessions. The following outcome measures were administered at baseline (T1), immediately post-intervention (T2) and three-month follow-up (T3): Generalized Anxiety Disorder-7, Patient Health Questionnaire-9, Zarit Burden Interview, The Experience of Suffering Measure and Acceptance and Action Questionnaire-II.FindingsAll 45 participants completed the study, with 93.3% rating their OACTIC experience as “completely satisfied.”Originality/valueOACTIC (Trial Registration# AEARCTR-0012366) is a novel study conducted in Pakistan, offering a cost-effective and time-efficient treatment approach that enhances the psychological well-being and protects older adults and their caregivers.

L’électroconvulsivothérapie, toute une (psycho)éducation !

BackgroundElectroconvulsive therapy (ECT) remains an essential, yet often stigmatized, treatment in psychiatry. Addressing this issue, our study introduces and evaluates a psychoeducational intervention aimed at demystifying ECT for patients and their caregivers, using the QuAKE (Questionnaire on Attitudes and Knowledge of ECT). MethodsThis psychoeducational approach was designed for individuals indicated for ECT and their caregivers. The session's effectiveness was gauged by comparing pre- and post-intervention QuAKE scores. Statistical significance was determined using paired Student t-test. ResultsThe study included 20 participants, with caregivers constituting 90% of the sample. The intervention led to a statistically significant increase in knowledge (mean increase of 7.55 points, p<0.001) and a notable decrease in stigmatizing attitudes (mean decrease of 9 points, p<0.001) towards ECT, as measured by the QuAKE scales. DiscussionThe significant improvements in both knowledge and attitudes underline the potential benefits of incorporating psychoeducational interventions into ECT treatment protocols. Future research should further explore the role of such interventions in the broader treatment pathway, enhancing patient and caregiver understanding and acceptance of ECT.

‘Let him die in peace’: understanding caregiver’s refusal of medical oxygen treatment for children in Nigeria

IntroductionEfforts to improve oxygen access have focused mainly on the supply side, but it is important to understand demand barriers, such as oxygen refusal among caregivers. We therefore aimed to...

The shared decision-making tool for caregivers of children with prenatal opioid exposure: A pilot and acceptability study.

This pilot and acceptability study sought to report provider acceptability and developmental concerns expressed by caregivers of children with prenatal opioid exposure using the Shared Decision-Making Tool (SDMT), an instrument created by study authors. Data were collected from five health care and early intervention providers and 83 caregivers from a medical clinic and early intervention service center. Descriptive statistics were used to identify frequency, mean level, and prioritization of developmental concerns using the SDMT, and to summarize provider acceptability about integrating the SDMT into their workflow. Communication was the most frequently cited concern in four consecutive age categories, followed by Inattention/impulsivity and Problem behavior. All providers "strongly agreed" or "agreed" with all statements on the provider feedback survey, except two instances. Results of this study support the SDMT as a potential tool to help engage caregivers and providers of children with prenatal opioid exposure in the shared decision-making process by standardizing communication related to areas of developmental concern and caregivers' priority needs. Findings from this pilot study will inform modifications to the SDMT and administration instructions before our next study, which will examine psychometric properties and caregiver acceptability of the scale.

A Web-Based Intervention Based on Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Mixed Methods Feasibility Study.

Acceptance and commitment therapy (ACT), as an empirically based third-wave cognitive behavioral therapy, has shown promise in enhancing well-being and functioning across diverse populations. However, in the context of caregiving, the effect size of available ACT interventions remains at best moderate, sometimes accompanied by high dropout rates, highlighting the need for more effective and feasible intervention designs. The objective of our study was to evaluate the feasibility and acceptability of a fully online ACT program designed for family caregivers of people with dementia. This study aimed to boost psychological flexibility and support caregivers, enabling them to realize and prioritize their own life values alongside their caregiving responsibilities. A mixed methods feasibility study using an uncontrolled pretest-posttest design was conducted. This intervention included a 9-week web-based self-help program based on ACT incorporating collaborative goal setting and weekly web-based motivational coaching for family caregivers of people with dementia. This study involved 30 informal caregivers recruited through memory clinics and social media platforms in the Netherlands and received approval from the Medical Ethics Committee of the Maastricht University Medical Center+ (NL77389.068.21/metc21-029). A total of 24 caregivers completed the postintervention assessment, indicating a high adherence rate (24/29, 83%). Caregivers reported positive feedback regarding collaborative goal setting, but some found challenges in implementing new skills due to their own habitual responses or the unpredictable context of dementia caregiving. Personalizing the intervention based on individual value preferences was highlighted as beneficial. Compared to other web-based self-help ACT interventions for family caregivers, this intervention showed a high adherence and sufficient level of feasibility, which underscores the use of personalization in delivering web-based interventions. Moreover, the potential of this ACT-based intervention for family caregivers of people with dementia was demonstrated, suggesting that further research and a larger-scale controlled trial are warranted to validate its effectiveness. RR2-10.1136/bmjopen-2022-070499.

Parental use and acceptance of an accessible, commercially available intraoral camera for teledentistry in their children.

The potential of combining teledentistry and engaging parents as underutilised resources to monitor paediatric dental health was emphasised during the COVID-19 pandemic and remains underexplored. This study aims to assess parental acceptance and use of a commercially available intraoral camera (IOC) for effective remote monitoring. 47 child-parent dyads, where the parent was the main caregiver and the child was treated under general anaesthesia for early childhood caries, were recruited. Caregivers were trained to image their child's teeth on a commercially available IOC. Subsequently, submitted images were reviewed asynchronously by dentists for image quality, presence of dislodged fillings, abscesses, cavitation, and oral hygiene. Post-surgery monitoring was performed using teledentistry at 1 and 2months and in-person at 4months. A modified Telehealth Usability Questionnaire (TUQ) was used to record caregiver acceptance for study procedures. A mean TUQ of 6.09 out of 7 was scored by caregivers. Caregiver-reported issues were limited to problems with technique and child uncooperativeness. The number of clear images during the second teledentistry review was improved compared to the first (p = 0.007). 68% of children liked having images of their teeth taken. This study supports the feasibility of using an IOC as a clinically appropriate avenue for teledentistry with a high level of caregiver-child acceptance.

Student and caregiver acceptability of a school-based intervention to improve sugar-sweetened beverage behaviors: a mixed methods study.

Kids SIPsmartER is a 6-month behavioral and health literacy intervention effective at reducing sugar-sweetened beverage (SSB) intake among middle school students and their caregivers in the rural Appalachian region. This exploratory mixed methods study utilized a convergent parallel design to assess participant acceptability of a school-based curriculum for students and a text messaging program for caregivers. Acceptability was assessed using surveys (873 students and 453 caregivers), five focus groups (34 students) and telephone interviews (22 caregivers). Quantitative data were analyzed descriptively, and qualitative data were content coded. On a 5-point scale, average quantitative survey acceptability ratings ranged from 2.7 to 3.3 among three student-rated questions and 4.1 to 4.2 among four caregiver-rated questions. Qualitative focus group findings suggested that students preferred curricular activities that were hands-on and involved social interaction, while caregiver interview results showed high acceptability of the text messaging program's design, including usability, content messages and personalization. Students and caregivers reported similar program benefits: increased knowledge of SSBs and health risks, increased awareness of SSB behaviors and support to make beverage behavior changes. Results from this study can be used to understand Kids SIPsmartER's effectiveness data, communicate the intervention's acceptability with stakeholders and plan for future implementation studies.

An Open Trial of a Brief Engagement Program for Caregivers of Children with ADHD

ABSTRACT This open trial evaluated the feasibility, acceptability, and preliminary efficacy of Bootcamp for ADHD (BC-ADHD), a novel, four-session, group intervention designed to prepare caregivers as informed consumers to engage in multimodal evidence-based treatments (EBTs) for ADHD. Participants were 59 primary caregivers (85% biologic mothers) of children recently diagnosed with ADHD within a co-located, subspecialty pediatric clinic (ages 5–11; 73% male). Results indicated BC-ADHD was feasible to deliver, as evidenced by high levels of program usability (i.e. content and process fidelity), and caregiver behavioral engagement (M attendance = 88%; M homework adherence = 2.95 homework, SD = 1.15, 0–4 range). Families were also very satisfied (M = 6.06, 1–7 range). At post-treatment, BC-ADHD resulted in increases in caregiver empowerment and acceptability of behavioral treatment and reductions in concerns about both behavioral (adverse effects and feasibility) and medication (adverse effects) treatments (absolute Cohen’s d = 0.27 to 0.35). At 6-month follow-up, effects were sustained for increases in caregiver empowerment and for reductions in concerns about both behavioral and medication treatments (absolute ds = 0.36 to 0.40). Sleeper effects were observed for increased medication acceptability and decreased affiliate stigma (absolute ds = 0.26 to 0.29). Child impairment was also reduced at follow-up (d = -0.58). The percentage of caregivers who initiated behavior therapy (Kendall’s w = 0.63) or medication (Kendall’s w = 0.15) increased from baseline to 6-month follow-up. These findings provide initial support for BC-ADHD as a promising engagement program to foster positive caregiver attitudes and initiation of EBTs.

Satisfaction with videoconferencing support for levodopa-carbidopa intestinal gel: An observational study.

Levodopa-carbidopa intestinal gel (LCIG) is a continuously delivered Parkinson's disease therapy intended to stabilize plasma levodopa levels. Patients receiving LCIG require education and follow-up. Some LCIG support programs use video-assisted telenursing. To examine how videoconferencing impacts satisfaction with LCIG support programs. FACILITATE CARE (Feasibility of video-Assisted Care for Intestinal Levodopa Infusion with Telenursing - observAtional Trial Evaluating patient and Caregiver Acceptance in REal life) was a 12-week, prospective, open-label, 2-arm, parallel-group, observational study assessing satisfaction with LCIG support in patients who self-assigned to video or audio-only arms. Patients aged 18-85 years had completed LCIG titration and owned a videoconferencing device (video arm only). A visual analog scale measured satisfaction (1-10, 10 being most satisfied). Patients' mean (standard deviation) ages were 67.9 (7.4, n = 26) and 71.1 (6.2, n = 15) years in the video and audio arms, respectively. Patients, caregivers, and physicians in both groups reported satisfaction scores of 8-10 with LCIG support personnel, communication access, and assistance with becoming independent. At week 12, the Modified Caregiver Strain Index least square means change from baseline was lower in the video vs. audio arm (-2.3 [1.0] vs. 1.6 [1.2]). LCIG support personnel travel time was lower in the video vs. audio arm (125.7 [70.2] vs. 203.0 [70.0] minutes). LCIG support programs are associated with high patient, caregiver, and physician satisfaction; video and audioconferencing satisfaction are similarly high. Video-assisted telenursing may be a convenient communication avenue and may reduce caregiver burden. ClinicalTrials.gov; NCT04500106.

Factors Influencing the Implementation of Infant Warming Devices Among Healthcare Workers in Malawian Hospitals.

Objectives. Preterm infants are at risk of hypothermia. This study described the available infant warming devices (IWDs) and explored the barriers and facilitators to their implementation in neonates in Malawi. Methods. A qualitative descriptive study was conducted among 19 health care workers in Malawi from January to March 2020. All interviews were digitally recorded, transcribed, and managed using NVivo and analyzed using a thematic approach. Results. The warming devices included radiant warmers, Blantyre hot-cots, wall-mounted heaters, portable warmers, and incubators. Inadequate equipment and infrastructure and gaps in staff knowledge and capacity were reported as the main challenges to optimal IWD implementation. Caregiver acceptance was described as the main facilitator. Strategies to optimize implementation of IWD included continuous practical training and adequate availability of equipment and spare parts. Conclusion. Implementation of warming devices for the management of neonatal hypothermia is effective when there are adequate human and material resources.

Blended web-based Acceptance and Commitment Therapy for Informal Caregivers of people with dementia (ACT-IC study): Result of social health aspects

Objective:Numerous e-health programs have shown the potential to enhance psychological and social health outcomes in informal caregivers of People with Dementia (PwD). However, there is still a need for evidence-based interventions tailored to the specific needs of this population, such as maintaining self-management and participating in meaningful activities. This mixed-methods study aims to evaluate the feasibility, acceptability, and preliminary effectiveness of a blended intervention based on acceptance and commitment therapy for informal caregivers of PwD, leading to a better understanding of intervention refinements for future controlled trials.Method:A single-arm clinical trial design is conducted. A total of 20 informal caregivers of PwD are recruited through memory clinics and social media platforms in the Netherlands. The ACT-IC intervention is delivered over a 9-week period and consists of a collaborative goal-setting session, nine online modules, and nine telephone-based motivational coaching sessions. Feasibility and acceptability are assessed using the attrition rate, adherence to, and engagement with the intervention, the proportion of missing data, and semi-structured interviews. Clinical outcome measures assess depression, anxiety, stress, sense of competence, burden, and self-efficacy at baseline and post-intervention.Results:Data collection will be completed by May 2023, and analyses are ongoing. Of the 20 caregivers, 19 completed the baseline assessment, and 3 dropped out. Results of an ANOVA investigating the effect of ACT-IC on the outcome measures at post-intervention will be reported, as well as the results of post-hoc analyses that explored the effect on outcomes of goal attainment and meaningful activities, observed use of the website, and reported adherence to the recommended frequency of website use.Conclusion:The result will contribute to the need for further research on supportive e-health interventions for informal caregivers of PwD. The ACT-IC study is the first trial to apply an evidence-based blended approach to address and evaluate the specific shared needs of caregivers. The mixed-method approach may offer a better understanding of reasons for dropouts, as well as barriers and facilitators that informal caregivers experience over the course of the intervention. Furthermore, social interaction (telephone-based motivational coaching) might improve the feasibility and acceptability of the online ACT intervention.

Workshop 3: Develop, implement and evaluate technology for social health in dementia: lessons in best practice from the European DISTINCT network

Objective:DISTINCT is a Marie Sklodowska-Curie Innovative Training Network. Supported by the INTERDEM network and European Association of Geriatric Psychiatry, DISTINCT aimed to establish a multi-disciplinary, multi-professional and intersectorial European research framework, for assistive technologies to support social health in dementia. In this symposium, we present research associated with the maturity lifecycle (development to evaluation) of four technologies: the ROADMAP online self-management intervention; online peer support for people with young onset dementia; online acceptance and commitment therapy for caregivers (ACT); and the FindMyApps tablet-based intervention for people with dementia and their caregiver.Method:In 2019, 15 ESRs were recruited to 13 research organizations across 8 European countries. Research projects were launched in collaboration with people living with dementia and caregivers, and industry partners. Projects were adapted to meet challenges and opportunities due to the COVID-19 pandemic. The projects presented in this symposium employed a variety of research paradigms (user-centred design, feasibility and implementation studies, randomized controlled trials). Key insights from each project were combined into best practice guidance for developers, researchers, healthcare professionals and people living with dementia, covering the full innovation lifecycle.Results:All DISTINCT research projects are now in the final stages, having so far resulted in more than 35 peer reviewed publications and many contributions to international conferences. Insights were incorporated into the Best Practice Guidance for Human Interaction with Technology in Dementia, published in December 2022, which will be updated by the end of 2023 with further insights from completed projects. Key findings presented in this symposium concern: development of ROAD MAP online; best practices for, and barriers to, online peer support; acceptability and preliminary effectiveness of online ACT; effectiveness and cost effectiveness of FindMyApps.Conclusion:There is growing evidence that assistive technologies are feasible and effective for supporting social health of people with dementia and caregivers. People living with dementia, formal and informal caregivers, policymakers, designers, and researchers can refer to the DISTINCT Best Practice Guidance to inform their approach to assistive technology. Future research can build on these results, to further understand and improve usability, (cost-)effectiveness, and implementation of assistive technology in dementia.

LGBTQ+ youth experiences of the COVID-19 pandemic as observed through gender-sexuality alliances

Many of the factors that put LGBTQ+ youth at risk for poor mental health outcomes before the COVID-19 pandemic were exacerbated by the period of home confinement during the pandemic. The following exploratory study investigated the experiences of LGBTQ+ youth during the pandemic as perceived by Gender-Sexuality Alliance (GSA) advisors. In October-November 2021, recruitment began for a qualitative survey shared via a closed Facebook group for GSA advisors in a Midwestern state, in addition to an email sent by a nonprofit supporting GSAs in that state. Advisors were asked to complete the survey in reference to their experience facilitating these school clubs from March 2020-March 2021, a period during the pandemic that saw the highest number of restrictions around home confinement along with schools moving to a virtual format. Findings included themes reflecting impacts of the level of caregiver acceptance on access to support, youth engaging in support-seeking behaviors, and enhancements and challenges of virtual meetings. Implications for social work intervention are shared, focusing on supporting caregivers on a path toward acceptance of their child and advocating for policies that transform the culture and the conversation from whether LGBTQ+ youth can exist as themselves in some spaces, to fully embracing their identity as valued members of society.