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Background: The COVID‐19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters. Methods: A co‐designed tool, the COVID Check‐in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check‐in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups. Findings: Forty‐four percent of participants engaged in the Health Check‐in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check‐in, along with challenges using the COVID Check‐in Tool, according to both the adults with disabilities who were interviewed and the family caregivers. Conclusions: The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical. Accessible Summary: Our team worked together to make a tool that would help people with intellectual and developmental disabilities talk to their doctor about health problems after not seeing them a lot because of the pandemic. We called this tool the 'COVID Check‐in'.Then people from our team taught online health courses about how to use the COVID Check‐in Tool and other health topics.After the courses were over, we asked 36 adults with intellectual and developmental disabilities and 96 family caregivers if they had a Health Check‐in with their doctor and how it went, or what problems they had with it.Almost half of the people who took the courses had a Health Check‐in and most of the people thought it was helpful. Some people did not do it or did it but had problems with it.We end the paper with some ideas of how to make it easier to check in with the doctor and why it is important to include people with disabilities and family caregivers when making healthcare tools. [ABSTRACT FROM AUTHOR]

Background: Acquired laryngotracheal stenosis (LTS) is a rare condition that causes breathlessness and dyspnoea. Patients have reconstructive airway surgery to improve their breathing difficulties, but both LTS and the surgery can cause voice difficulties. The existing evidence base for management of voice difficulties for adults with LTS focuses on symptoms. There is limited information to provide clinical guidance for speech and language therapists (SLTs) and a limited understanding of the impact of voice changes on adults with LTS. Aim: To investigate the lived experience of adults with laryngotracheal stenosis (LTS), who have had reconstructive surgery; here focussing on voice concerns with the aim of guiding clinical care for SLTs. Methods and Procedures: A phenomenological, qualitative study design was used. Focus groups and semi‐structured interviews were completed with adults living with LTS who had had reconstructive surgery. Audio recordings were transcribed and inductive thematic analysis was used by the research team to identify themes and sub‐themes. Outcomes and Results: A total of 24 participants (five focus groups and two interviews) took part in the study before thematic saturation was identified in analysis. Three main themes were identified specific to the experience of living with LTS: the Medical, Physical and Emotional journey. All participants referenced voice difficulties as they related to each of these overall themes. Sub‐themes directly related to voice included experience of surgery, information provision, staff expertise/complacency, symptoms, symptom management, identity, support networks, impact on life and living with a chronic condition. Conclusions and Implications: In this qualitative study participants have described the integral part voice difficulties play in their lived experience of LTS and reconstructive surgery. This is considered in the context of their clinical care and the need for individualised management and information provision throughout the course of their condition. The broader research literature relating to voice difficulties is explored with links made to people with LTS and recommendations made for future research into people living with LTS and dysphonia. What this paper adds: What is already known on this subject: Adults with laryngotracheal stenosis (LTS) experience voice changes as a result of their condition, and the surgeries necessary as a treatment. These changes can lead to altered pitch, vocal fatigue, loss of pitch range and loss of volume control. Although there are known psychosocial implications both to living with a chronic condition and voice difficulties there has been no research exploring this in adults with LTS, and there is minimal clinical guidance for speech and language therapists (SLTs) working with these patients. What this paper adds to existing knowledge: This research is the first study to explore the lived experience of adults with LTS who undergo reconstructive surgery, focusing on their voice concerns. This study demonstrates the multifactorial impacts of voice changes on all aspects of the lives of adults with LTS and the need for individualised information provision and clinical care to help support them. What are the potential or actual clinical implications of this work?: Adults with LTS want expert SLTs to facilitate their care and support them throughout their LTS journey alongside other support networks. They want to be carefully prepared for reconstructive surgery and given clear information about symptoms and management of their voice difficulties. This has led to the reorganisation of the care pathway at our centre, and the introduction of a patient‐led pretreatment session. [ABSTRACT FROM AUTHOR]

Background: A limited number of studies have explored religion's role in the intimate lives of adults with intellectual disabilities. This paper illustrates how religion, both of disabled people and those around them (e.g., family members, support workers), can shape the attitudes and experiences of disabled people toward sexuality. Method: This paper draws on in‐depth interviews with adults with intellectual disabilities and support workers from two exploratory projects in Canada. Results: Participants with intellectual disabilities talked about how religion provided a network that served to counter their social isolation and a pool of potential intimate partners, as well as some guidance for maintaining relationships. Support workers discussed the influence of organisational values in their practices related to sexuality. Conclusions: Religion shapes disabled sexualities in various ways, sometimes supporting or constraining sexual expression. This paper invites disability scholars to consider religion when researching the intimate lives of disabled people. [ABSTRACT FROM AUTHOR]

Young people are more likely to seek help about abusive relationships from friends, rather than adults or professionals, irrespective of gender, age or ethnic group. However, friends may be unequipped to deal with relationship problems and unable to provide adequate emotional or practical support. The aim of this paper is to explore how young people would support friends if they were seeking help or shared experiences of abuse. Qualitative findings drawn from a larger UK mixed‐methods study are used to explicate this. Data was gathered using 16 focus groups and one interview with girls, young women and non‐binary young people aged 13 to 24 years. Thematic analysis provided six themes pertaining to supporting friends and help‐seeking around relationship abuse. Findings showed young people recommended supporting friends in a non‐judgemental way to keep conversations open and help them recognise unhealthy behaviours. However, young people confirmed this is a difficult topic and many would feel fearful, helpless and under pressure. Conversations illustrated the need for more awareness of non‐physical abuse and resources specifically aimed at young people to enable them to help friends and know where and when to seek professional support. [ABSTRACT FROM AUTHOR]

Background: Adults with intellectual disabilities have historically been hindered, rather than supported, in their desire to form loving relationships. This paper sought to explore with them what kinds of support they wanted in the 21st Century. Method: Semi‐structured in‐depth interviews were conducted with 40 adults with intellectual disabilities in the United Kingdom. Results: Participants placed a high value on having a partner and being supported to maintain and develop a loving relationship. The factors which constrained them in achieving this included a lack of social opportunities, barriers created by social care services and limits on them exercising autonomy. Facilitating factors included access to specialist dating agencies, strong family and staff support and opportunities to learn about relationships. Conclusions: The importance of a loving relationship as a source of pleasure and meaning in the lives of adults with intellectual disabilities who are often disadvantaged in many other spheres of life is emphasised. [ABSTRACT FROM AUTHOR]

Background: Autistic people require varying levels of support at different stages of their lives. Yet, the healthcare needs of autistic adults are largely unmet. Speech and language therapy (SLT) is one healthcare service that has an important role in supporting autistic people: both with initial diagnosis, and with the ongoing support needed to navigate different communicative challenges across the lifespan. Despite recommendations for such support, currently there is no clear SLT pathway for autistic adults, and a lack of established approaches to support autistic adults' speech, language and communication needs. Aims: To seek autistic adults' views on (1) their communication skills and support needs; (2) the type of support SLT could offer; and (3) how such support could be provided. Methods & Procedures: A total of 18 autistic adults were interviewed in their preferred mode of communication (e.g., face to face, phone call, text messaging, e‐mail), expressing their views on their communication skills and needs. Interview data were analysed using thematic analysis. Outcomes & Results: Autistic adults presented complex views on communication, identifying the benefits of communication, while also emphasizing the significant negative impact that communication difficulties can have on their everyday lives. Identifying a range of internal (e.g., personal feelings) and external (e.g., the communication partner) factors, they highlighted the need for support at both individual levels (for specific life situations) and broader societal levels (to increase awareness and acceptance of communication difficulties). Conclusions & Implications: Considering the negative impact that communication difficulties can have for autistic adults, a need for support was emphasized. Despite recognition of this need within current legislation (in the UK) and positive steps toward providing support, more needs to be done. As experts in supporting individuals with communication difficulties, speech and language therapists could play a pivotal role in providing support at an individual level, as well as increasing awareness of communication differences more widely. What this paper addsWhat is already known on this subjectThere is a growing population of autistic adults with unmet support needs. A core characteristic of autism is difficulty with neurotypical social communication and interaction, which persists into adulthood and impacts across various life domains.What this paper adds to existing knowledgeAutistic adults outlined the types of communication difficulties they experience, and how these can negatively impact on physical and mental health. Results highlight how these difficulties are not just rooted within the person themselves but can be influenced by external factors (e.g., the environment and the communication partner).What are the potential or actual clinical implications of this work?Some autistic adults may benefit from direct support from SLT services. However, increased awareness and respect for communication differences at a broader societal level is also needed. Speech and language therapists can play an important role in increasing this level of awareness, positively highlighting differences in communication and ways to support people with communication difficulties/differences. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Research highlights the role of key actors and relationships in supporting the educational attainment and progress of children in care and care leavers. We know less about how relationships influence the educational journeys of people with care experience over time and how to support the educational progress and engagement of adults with care experience. The principle of "linked lives" is central to the life course perspective referring to the interdependence of human lives throughout the life course. This paper explores how the principle of linked lives can illuminate our understanding of how relationships positively influence the educational journeys of adults with care experience over time. Educational life history interviews were conducted with 18 care‐experienced adults (aged 24–36) in Ireland. Findings suggest that the principle of linked lives is a valuable conceptual tool for providing new insights on this issue. Four key themes were identified: (a) opportunities for educational support are present across the life course; (b) "family" is a central source of educational support; (c) there is intergenerational capacity for educational support; and (d) relationships beyond the "family" are supportive of education. Implications for practice, policy, and research are explored. [ABSTRACT FROM AUTHOR]

Introduction: This paper describes first‐line department healthcare professionals' experiences of conversations with young adults (16–25 years) who express existential concerns. Existential concerns encompass questions about the meaning of life and the choices people must make, and they are sometimes expressed during the period in which a child is becoming an adult. Sometimes the transition to adulthood can be difficult, and many young adults seek support from people in first‐line departments, such as primary care providers, youth guidance centre personnel and student health service employees in high schools and universities. Conversations in which existential concerns are recognised may be important for preventing mental illness in the future. Aim: The study aimed to describe healthcare professionals' lived experiences of conversations with young adults who express existential concerns. Approach and methods: This qualitative study utilises thematic meaning analysis. Interviews were conducted with healthcare professionals working in first‐line departments, and data were analysed based on the principles of reflective lifeworld research. The study followed ethical codes of conduct and conformed to the ethical guidelines adopted by the Swedish Research Council. Findings: The results are presented in three themes of meaning: searching for innermost thoughts requires being present, uncertainty about the unpredictable and awakening of one's own existential concerns. Conclusions and implications: Healthcare professionals are affected when young adults express their existential concerns, and they need more support to strengthen their ability to stay present and create inviting atmospheres. [ABSTRACT FROM AUTHOR]

Promoting community participation for people with intellectual disability through encounter with strangers is an integral part of the mission of disability support workers. This paper offers detailed micro-level analysis of the practices of support workers when they accompany a person with intellectual disability outside their home and explores the subtle differences which make some staff practices more effective than others in promoting more convivial encounters with strangers. Based on 160 h of observations of twenty-six adults with intellectual disability in a variety of public places, and interviews and focus groups with their support workers, the paper points to some of the critical judgements support workers need to make when considering whether, when and how to initiate or intervene in such encounters. [ABSTRACT FROM AUTHOR]

Abstract: Background: Adolescents living with chronic conditions often portray themselves as “healthy” online, yet use the Internet as one of their top sources of health information and social communication. There is a need to develop online support programs specific to adolescents with chronic conditions in order to provide a private space to discuss concerns. This paper endeavors to increase our understanding of the online support needs and wants of these adolescents and their interest in and preferences for an online support program. Methods: A qualitative descriptive study using semistructured interviews was completed. Stratified purposive sampling was utilized to ensure a representative sample based on age and diagnosis. English speaking adolescents (aged 12–18 years) diagnosed with a chronic condition were recruited from clinic and inpatient areas across 3 paediatric hospitals in Canada. Results: Thirty‐three participants aged 15.3 ± 1.8 years (64% female) completed the study. The main topics identified were (a) the purpose of current online activity, (b) the benefits and challenges of existing online supports, and (c) a description of ideal online resources. The purpose of online activity was social networking, information, online gaming, and social support. When accessing health information online, participants prioritized websites that were easy to access and understand despite the trustworthiness of the site. The reported benefits and challenges varied across participants with many areas perceived as both a benefit and a challenge. The majority of participants were interested in participating in an online support program that included both accurate disease‐related information and a community of other adolescents to provide social support. Conclusions: Adolescents with chronic conditions are interested in online support that encompasses health information and social support that is flexible and easy to navigate. Findings can be used to develop or adapt existing online support programs for adolescents with chronic conditions to help increase engagement and utilization. [ABSTRACT FROM AUTHOR]