Facilitators' Experiences of Delivering a Tailored Health Education Resource to People With Mild/Moderate Intellectual Disability

To explore the preparedness and training needs of a regional public mental health workforce to support people with intellectual disability and mental ill health. Staff from a regional public mental health service in Victoria, Australia. A mixed-methods design comprised a survey, interviews and a focus group to collect data about staff attitudes, confidence, education and professional development regarding supporting people with intellectual disability and mental ill health. Descriptive and thematic analyses were used. Data from 31 survey respondents, seven interviews and one focus group were analysed. Survey descriptive analyses showed participants believed treating people with intellectual disability was part of their role but reported areas of low confidence along with insufficient education and training in intellectual disability mental health. Thematic analyses from interviews showed that underpinning confidence, education and training were the themes (1) need for flexibility, such as having more time and (2) solutions but with challenges, such as limited opportunity to upskill and availability of experts. A need for collaborative problem-solving where staff share skills and information to work towards person-centred solutions was a key theme from the focus group analysis. Professional development in intellectual disability mental health is required for the regional public mental health workforce but needs to account for the challenges experienced and reflect how teams function. Exploration of described preparedness offered a possible learning approach informed by workforce members. Collaborative learning approaches to supporting people with intellectual disability and mental ill health are suggested.

Timely detection of stress in people with dementia and people with an intellectual disability (ID) may reduce the occurrence of challenging behavior. However, detecting stress is often challenging as many long-term care (LTC) residents with dementia and residents with ID have communication impairments, limiting their ability to express themselves. Wearables can help detect stress but are not always accepted by users and are uncomfortable to wear for longer periods. Integrating sensors into clothing may be a more acceptable approach for users in LTC. To develop a sensor system for early stress detection that is accepted by LTC residents with dementia and residents with ID, understanding their perceptions and requirements is essential. This study aimed to (1) identify user requirements for a garment-integrated sensor system (wearable) for early stress detection in people with dementia and people with ID, (2) explore the perceptions of the users toward the sensor system, and (3) investigate the implementation requirements in LTC settings. A qualitative design with 18 focus groups and 29 interviews was used. Focus groups and interviews were conducted per setting (dementia, ID) and target group (people with dementia, people with ID, family caregivers, health care professionals). The focus groups were conducted at 3 time points within a 6-month period, where each new focus group built on the findings of previous rounds. The data from each round were used to (further) develop the sensor system. A thematic analysis with an inductive approach was used to analyze the data. The study included 44 participants who expressed a positive attitude toward the idea of a garment-integrated sensor system but also identified some potential concerns. In addition to early stress detection, participants recognized other potential purposes or benefits of the sensor system, such as identifying triggers for challenging behavior, evaluating intervention effects, and diagnostic purposes. Participants emphasized the importance of meeting specific system requirements, such as washability and safety, and user requirements, such as customizability and usability, to increase user acceptance. Moreover, some participants were concerned the sensor system could contribute to the replacement of human contact by technology. Important factors for implementation included the cost of the sensor system, added value to resident and health care professionals, and education for all users. The idea of a garment-integrated sensor system for early stress detection in LTC for people with dementia and people with ID is perceived as positive and promising by stakeholders. To increase acceptability and implementation success, it is important to develop an easy-to-use, customizable wearable that has a clear and demonstrable added value for health care professionals and LTC residents. The next step involves pilot-testing the developed wearable with LTC residents with dementia and residents with ID in clinical practice.

BACKGROUND Timely detection of stress in people with dementia and people with an intellectual disability (ID) may reduce the occurrence of challenging behavior. However, detecting stress is often challenging as many long-term care (LTC) residents with dementia and residents with ID have communication impairments, limiting their ability to express themselves. Wearables can help detect stress but are not always accepted by users and are uncomfortable to wear for longer periods. Integrating sensors into clothing may be a more acceptable approach for users in LTC. To develop a sensor system for early stress detection that is accepted by LTC residents with dementia and residents with ID, understanding their perceptions and requirements is essential. OBJECTIVE This study aimed to (1) identify user requirements for a garment-integrated sensor system (wearable) for early stress detection in people with dementia and people with ID, (2) explore the perceptions of the users toward the sensor system, and (3) investigate the implementation requirements in LTC settings. METHODS A qualitative design with 18 focus groups and 29 interviews was used. Focus groups and interviews were conducted per setting (dementia, ID) and target group (people with dementia, people with ID, family caregivers, health care professionals). The focus groups were conducted at 3 time points within a 6-month period, where each new focus group built on the findings of previous rounds. The data from each round were used to (further) develop the sensor system. A thematic analysis with an inductive approach was used to analyze the data. RESULTS The study included 44 participants who expressed a positive attitude toward the idea of a garment-integrated sensor system but also identified some potential concerns. In addition to early stress detection, participants recognized other potential purposes or benefits of the sensor system, such as identifying triggers for challenging behavior, evaluating intervention effects, and diagnostic purposes. Participants emphasized the importance of meeting specific system requirements, such as washability and safety, and user requirements, such as customizability and usability, to increase user acceptance. Moreover, some participants were concerned the sensor system could contribute to the replacement of human contact by technology. Important factors for implementation included the cost of the sensor system, added value to resident and health care professionals, and education for all users. CONCLUSIONS The idea of a garment-integrated sensor system for early stress detection in LTC for people with dementia and people with ID is perceived as positive and promising by stakeholders. To increase acceptability and implementation success, it is important to develop an easy-to-use, customizable wearable that has a clear and demonstrable added value for health care professionals and LTC residents. The next step involves pilot-testing the developed wearable with LTC residents with dementia and residents with ID in clinical practice.

People with intellectual and developmental disabilities remain more digital excluded than many other groups within society. Perceived vulnerability of people with intellectual and developmental disabilities by those providing support may increase their digital exclusion and the digital divide. Few studies have considered online risk from the perspective of adults with intellectual and developmental disabilities. Online risks have previously been classified as contact, conduct and content but little is known about how adults with intellectual disabilities experience these specific risks. Underpinned by post-postivist and phenomenological epistemologies, perceptions and meanings of online risks for people with intellectual and developmental disabilities were gathered. Individual interviews were conducted with thirteen adults with intellectual and developmental disabilities who all identified themselves as self advocates. Interview discussions considered online risk experiences of being online and using social media. Data were audio recorded, transcribed verbatim and analysed using thematic analysis. Overarching themes of risk experiences, awareness and support to manage salient risks, and developing independence and resilience through online participation were identified. Accounts also identified concerns around online risks and carer gatekeeping as potential instrumental factors in digital exclusion, such exclusion was considered detrimental to wellbeing. Adults with intellectual disabilities with low support needs appeared more able to manage online risk than may be presupposed by a vulnerability-focused perspective. The importance of utilising language salient to the person when discussing risk was also highlighted. Experiential learning to better understand and manage salient online risks appears a way forward for both research and practice.

The American Association of Intellectual and Developmental Disabilities (AAIDD, 2011) assert that individuals with intellectual disabilities, irrespective of gender, have an equal right to learn about and experience their own sexuality. A review of the extant literature indicated that the voices of women with intellectual disabilities on the topic of familial culture, as it relates to sexuality, are rarely included (McCarthy, 1993; Shakespeare, 2000; Siebers, 2012). The purpose of this qualitative study was to examine the role of familial culture and lived experiences of women with intellectual disabilities, ages 21-35, in understanding their own sexuality. Eight women participated in individual and three repeated focus group interviews. The questions that guided this study included: (1) What is the role of familial culture in addressing sexuality for young women with intellectual disabilities and (2) How do young women with intellectual disabilities describe their understanding of sexuality? The findings of this study suggested that familial culture played a significant role in the women's decisions regarding accessing their own sexuality. In addition, data collected indicated that women's lived experiences highly influenced in their understanding of sexuality and as a women with intellectual disabilities. Data from a thematic analysis were used to develop a person-centered theoretical model for understanding sexuality. In addition, these data were used to create a research-based theatrical script, known as an Ethnodrama (Saldana, 2005) to bring forward the voices of these women affirming their understanding of sexuality.

to identify communication strategies suggested by Primary Health Care professionals to enhance older adults' understanding of health information. this qualitative, exploratory, and descriptive study involved 20 PHC professionals from the Health Units in a city in Rio Grande do Sul. Data were collected in June 2023 through focus groups and analyzed using discursive textual analysis. the category Strategies that Facilitate Communication with Older Adults emerged from the analysis. This category included strategies such as group meetings, using drawings to facilitate understanding, limiting the amount of information provided in each consultation, speaking slowly, using simple language, repeating information, and applying the re-teaching technique. professionals need training and guidance on communication strategies that can facilitate older adults' understanding of health information.

Background Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities. Specific aim: The present study sought to explore the views of service managers and families on the definitions, aims, outcomes and general experiences of these programmes among a sample of adults with intellectual disabilities (ID) using a range of alternative respite services. Method Participants were managers of respite services for people with ID (n = 6) and family members (predominantly parents, n = 32) of adults receiving respite services from these organisations. All participants were provided with appropriate information on the study and gave consent. Semi-structured interviews were used to explore participants’ perspectives on alternative respite provision for adults with ID. Data were analysed using thematic analysis, with multiple analysts involved to allow for reflection on the interpretation of data. Findings Managers and families showed diversity in the conceptualisations of respite services, with themes highlighting the importance of the break for both people with ID and families, as well as a clear focus on the needs of and developmental outcomes for the person with ID. As such respite was viewed as both a model of service and an outcome for families and individuals with ID. These differing views appeared to have implications for views on who was the target beneficiary of respite. Discussion The present study reflects alternative respite as a diverse experience for people with ID, their family members and the service providers supporting them. Nevertheless, views were generally positive. Further consideration of the nature of respite services beyond the traditional conceptualisation is warranted.

Previous research suggests that participation in the arts and/or disability arts can positively influence individuals’ affirmation, or a positive embracement, of a disability identity; however, until more recently, persons with intellectual disabilities have not been included in this research to the same extent as their peers with physical or sensory disabilities. This article contributes to the increasing empirical consideration of intellectual disability identity among professional artists. Data were collected via two focus groups, one with five performing artists and the second with five visual artists, as well as follow-up, individual interviews with 8 of the artists. Key findings were identified via thematic analysis. Findings show affirmation of an intellectual disability identity emerged as a stronger theme among performing artists than visual artists. Additional themes related to confidence development, peer relationships and demonstrations of capability supported the notion that professional art practice can foster the affirmation of an intellectual disability identity. Points of interest This research is about artists with intellectual disabilities and the “affirmative model” of disability. This model means thinking that disability is a good part of someone’s identity. Other research about how disability can be a good part of someone’s identity has focused on different types of disability. All participants in this research had intellectual disabilities. This paper describes the words and ideas that artists shared in two group discussions and individual interviews. Nobody else spoke for them. All performing artists said that intellectual disability was a good part of their identity. Some of the visual artists did not think it was a good part of their identity. Making art helped artists feel confident, make friends, and show what they could do. Making art helped some participants feel good about themselves and their intellectual disability. This means art can be connected to a positive identity for people with intellectual disabilities.

Children with intellectual and developmental disabilities are at a higher risk of developing dental caries. Few scoping reviews have been conducted in India to understand their issues. We aimed to summarise the distribution and risk factors of dental caries among children and adolescents with intellectual disabilities in India. A scoping review was conducted based on the Arksey O Malley framework. Quality assessment of studies, descriptive and thematic analyses were also conducted. We charted, collated, and summarised from four databases. Thirty-one studies met the study criteria consisting of children and adolescents with intellectual disabilities. Median caries prevalence was 70%, decayed missing and fIlled permenant teeth (DMFT) was 2.4, decayed missing and filled decidous teeth (dmft) was 2.36, and DMFS was 3.7. Major determinants were the severity of disability, socioeconomic status and parents' education. Oral care and dental visits were inadequate. Further exploration is required to improve access and reduce caries experience and prevalence among children with intellectual and developmental disabilities in India.

Evidence supports the effectiveness of shared book reading for promoting language and literacy development, but it is known that families experiencing vulnerability may have reduced access to books and are less likely to share books regularly at home. Community hubs often provide support to families experiencing vulnerability and may provide an opportunity to create environments that support families to engage in shared book reading, especially if families are invited into the creation of these environments through co-design. However, there is currently little evidence regarding the impact of co-designing shared book reading environments with families in community settings. The current study is part of a broader project which used co-design to develop a shared book reading environment in collaboration with stakeholders in a community hub. This small-scale study aimed to provide a preliminary evaluation of the impact of this co-designed shared book reading environment at the community hub on (1) the frequency of shared book reading at the hub; (2) participants' confidence and enjoyment of reading with children at the hub; and (3) participants' experiences of shared book reading at the hub. The co-design project was carried out in four phases with families, staff and community partners at the community hub. A convergent mixed-methods approach was used to collect and analyse quantitative and qualitative data in the first and last phase of the project to evaluate project outcomes. Quantitative data (environmental observations of reading at the hub and participant ratings of confidence and enjoyment of reading with children at the hub) were analysed using descriptive statistics and nonparametric statistical tests. Qualitative data (participants' responses regarding their experiences of changes implemented in the community hub) were analysed using inductive content analysis. An increased frequency of shared book reading was observed within the community hub after changes were implemented, and positive changes in enjoyment of book reading were recorded. Qualitative responses from participants following conclusion of the project were organised into three main categories, which showed that (1) children and families were reading more and enjoying reading activities that were happening; (2) children and families were borrowing more books; and (3) families had changed the way they were reading at home with their children. A co-designed shared book reading environment within a community hub had a positive impact on shared book reading experiences for families in areas with high levels of vulnerability. What is already known on this subject Community hubs provide a unique opportunity to support early language and literacy development in partnership with families in areas of vulnerability; however, there is limited literature investigating the impacts of these supports. A previous study utilised co-design to develop a shared book reading environment with stakeholders at a community hub in an area where a high proportion of children are considered to be 'vulnerable' in terms of language and literacy development. It was found that co-design enabled the development of collaborative changes to support shared book reading that were valued and owned by families, staff and community partners at the community hub. What this study adds The current study focused on evaluating the impact of a co-design project on the frequency of shared book reading at the hub and participants' experiences, confidence and enjoyment of reading with children at the hub. Analysis of pre- and post-data provide preliminary evidence that a co-designed shared book reading environment in a community hub can have a positive impact on increasing families' awareness and engagement with book borrowing, engagement in shared book reading activities in the community and at home, and participants' confidence and enjoyment of reading with children. What are the clinical implications of this work? Speech pathologists have an important role to play in prevention and promotion. This study has shown that collaboration with families experiencing vulnerability can support the implementation of strategies to promote shared reading in a community hub and demonstrate increased quality and frequency of shared book reading. The utilisation of a community hub also highlights the opportunities for the speech pathology profession to deliver community-based promotion and prevention initiatives as a strategy to address equitable language outcomes.

Introduction/background: The COVID-19 pandemic significantly impacted the availability of community support and resources to vulnerable populations, including persons experiencing homeless within the Regional Municipality of Durham, Ontario, Canada. In response, the Region developed pilot community hubs to address escalating unmet housing, healthcare and support needs. Why did you do it? The community hub evaluation project is a community-based research co-created by a research team from Ontario Tech University and community stakeholders to measure the community hubs' effectiveness in addressing service users' unmet needs during the COVID-19 pandemic. Who is it for? The project is relevant to healthcare and social service policymakers and service providers, service users, researchers, and community organizers involved in researching, funding, designing and delivering healthcare and social services for vulnerable populations. Who did you involve and engage with? The project collaborators comprised a research team from Ontario Tech University and an advisory committee of community hub staff members and service users convened by the research team. All aspects of the project’s design and implementation, including creating the data collection tools, participant recruitment, data collection, data analysis and developing the knowledge translation products, were completed in collaboration with the research advisory committee that met monthly. Service users on the advisory committee were compensated for their time and contribution. What did you do? A mixed-methods research design was used to explore the experiences of the community hub service users, staff members and subject matter experts. Service users were recruited from the community hubs. Staff members were recruited through virtual staff meetings. Face-to-face surveys were administered to 75 service users at the community hubs. Staff online surveys were self-administered by 15 direct service staff. Virtual interviews were conducted with five community hub managerial staff and two subject matter experts. Quantitative data were calculated using the SPSS statistical software. Qualitative data were analyzed using thematic analysis. What results did you get? What impact did you have? The integrated service model was described as saving service users’ lives. Adequate, core funding is required for the sustainability of the community hubs. Results from the evaluation provided the regional government with data to help inform its strategic priorities for vulnerable populations. What is the learning for the international audience? The needs of vulnerable populations including persons experiencing homelessness are deep and entrenched. Community hubs integrate a range of healthcare and social support services, including the social determinants of health that respond to service users’ immediate and emerging needs. What are the next steps? Knowledge translation through conferences, symposiums, presentations at regional sector tables and peer-reviewed publications. Collaborating with the community hubs to utilize the research findings to support improvement in future service design and delivery.

BackgroundTwo community hubs are currently located in Durham Region, Ontario, Canada, to provide a single point of access to a wide range of support services for individuals experiencing homelessness and other at-risk populations. The community hub in Oshawa is formally known as the Back Door Mission for the Relief of Poverty and the community hub in Ajax is formally known as the Ajax Hygiene Hub. It is unclear if these two community hubs are effective in addressing the needs of individuals experiencing homelessness and how the COVID-19 pandemic continues to impact these services amongst this population. This study was conducted to identify gaps and barriers within the community hub models as well as provide recommendations to improve the coordination and delivery of services serving individuals experiencing homelessness and other at-risk populations.MethodsA mixed methods approach was utilized in this study, which included surveys for individuals experiencing homelessness, through open-ended and close-ended questions to assess their experiences at either one of the two community hubs. A total of 75 surveys were completed by the study participants (40 surveys in Oshawa and 35 in Ajax). Thematic analysis was performed for all the open-ended survey responses. A literature review was also conducted to evaluate the community hub models as well as best practices for the implementation locally, nationally, and internationally.ResultsData analysis for the open-ended survey responses revealed the need for housing support, increased resources for medical services, and the expansion of programs provided by the community hubs.ConclusionsHomelessness is a major public health issue however community hubs play a pivotal role in addressing this concern in Durham Region. The equitable access to a diverse range of services that are co-located in a community hub is imperative for individuals experiencing homelessness, especially during the COVID-19 pandemic.Key messagesThe needs of homeless populations, program outcomes, service gaps, partnership collaboration, and best practices were explored to help inform the development of new community hubs in Durham Region.Study highlighted the effectiveness of community hubs in addressing the needs of homeless populations, whether it should become a permanent solution, and be developed in Durham Region and beyond.

ABSTRACTIntroductionPeople with intellectual disabilities (ID) face significant barriers to healthcare and preventive cancer care, resulting in delayed cancer diagnosis and higher mortality rates. There is limited understanding of the factors that influence their participation in colorectal cancer (CRC) screening, particularly from their own perspectives. This study aimed to identify the barriers, facilitators, and needs of people with ID for an inclusive CRC screening programme from their own experiences and viewpoints.MethodsSemi‐structured qualitative interviews and focus groups (N = 31) were conducted with adults with ID in Austria. Interviews and group discussions were audio recorded and transcribed verbatim. Thematic analysis was used as a flexible method to analyse the data.ResultsFive themes were identified from the data with each consisting of two to four sub‐themes: (1) independence within individually adjusted scopes of arrangement and decision‐making, (2) ‘When it comes to health, I do it’, (3) enhancing wellbeing, (4) seeing the person first, then their ID, and (5) deficits in resources and the healthcare system.ConclusionThe findings reveal significant barriers to healthcare and preventive cancer care for people with ID. The following practical implications were derived: Eliminating discrimination, improving accessibility, designing appropriate information and educational materials, implementing mandatory ID‐specific training for health professionals, considering the importance of emotions and implementing ID‐appropriate health services. Considering these aspects when developing inclusive cancer screening programmes is of paramount importance to promote equitable health and cancer prevention, especially for marginalised and vulnerable groups.

Women with intellectual disability (ID) are surviving to the age group at greatest risk of developing breast cancer (50-69 years). These women are more likely to experience a greater number of risk factors placing them at an advanced threat of developing breast cancer. However, as a result of cognitive deficits and communication difficulties these women are dependent upon staff to support them to attend the breast screening clinics. The aim of this paper was to examine how community nurses and residential staff support women with ID to access breast screening services. Six focus groups were held with community nurses and residential staff who work in the field of ID in one region of the UK. The focus groups were tape recorded and the transcriptions were subjected to a thematic content analysis. Although many of the participants recognised the risk factors and signs/symptoms of breast cancer, there was still a deficit of knowledge. Both positive and negative experiences of women with ID attending for breast screening were reported; however, greater discussion focused on the latter. The participants identified 'a lack of health educational material' and also negative 'emotions, attitudes and physical barriers' as inhibiting factors for attendance. This paper highlights the need for developing a health promotion programme for women with ID focusing on breast awareness and information on screening, and also healthier lifestyles. Breast awareness via visual checks was identified for women with ID who refused to attend the breast clinics; however, issues of informed 'consent' and 'vulnerability' were raised for staff and also family carers having to undertake these checks. Development of user-friendly health educational literature using 'pictures, symbols, signs' and simplified words should be accessible to all ID staff, healthcare staff, and also women with ID.

BackgroundAlthough there is consensus regarding the added value of adults with an intellectual disability and family carers as Patient and Public Involvement and Engagement (PPIE) members in research studies, there is limited reporting on the practice and impact of their involvement.MethodsPPIE input was integral to the application process and subsequent research activities in the NIHR-funded PETAL (PErsonalised Treatment packages for Adults With Learning disabilities) programme. We also conducted semi-structured interviews with five researchers/PPIE facilitators and four family carers, and a focus group with three adults with an intellectual disability who are members of the programme advisory groups. The GRIPP2 checklist guided the reporting of PPIE activities.ResultsThematic analysis identified four overarching themes: (a) Motivation for being a PPIE member, (b) Added value of PPIE input into research (c) Logistics and practicalities of PPIE activities, and (d) Insights and reflections. Family carers highlighted the benefit of giving a voice to adults with an intellectual disability in PPIE activities within research. Both PPIE groups were positive about being able to share their thoughts and feelings with the PETAL research team and making valued contributions to research activities. All stakeholders highlighted the importance of accessible meeting formats to facilitate PPIE activities. They also reflected on how meaningful collaboration could enhance research in the field of intellectual disability. Researchers raised the need for greater diversity within PPIE groups.ConclusionsFuture work should aim to further develop PPIE processes and identify strategies to maximise the diversity and inclusion of adults with an intellectual disability and family carers in research advisory groups.