Browsing by Person "Curnow, Eleanor"

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Are we getting better at identifying and diagnosing neurodivergent girls and women? Insights into sex ratios and age of diagnosis from clinical population data in Scotland
(Sage, 2025) Maciver, Donald; Roy, Anusua Singh; Johnston, Lorna; Boilson, Marie; Curnow, Eleanor; Johnstone-Cooke, Victiora; Rutherford, Marion
This study examined differences in referral and diagnosis based on sex recorded at birth (hereafter, ‘sex’), using case notes from 408 individuals diagnosed by 30 multidisciplinary teams across Scotland. Analyses focused on male-to-female ratios and median ages at referral and diagnosis across attention-deficit/hyperactivity disorder, autism and intellectual disability. The lifespan male-to-female ratio across all diagnoses was 1.31, varying by category and age. In autism, the male-to-female ratio was 2.21 for children under 10 years, but there were more females in adolescence (male-to female ratio=0.79) and adulthood (male-to-female ratio=0.94). Across the lifespan, combining all diagnoses, females were referred later (median ages: 14.4 vs 19.7 years; p<0.001) and diagnosed later (median ages: 15.2 vs 20.2 years; p<0.001), indicating a 5-year delay. Among autistic children and adolescents, females were referred later (median age: 7.5 vs 10.5years; p=0.002) and diagnosed later (median age: 9.3 vs 11.9years; p=0.003). However, no significant differences were found in age of referral or diagnosis for autistic adults. Overall, the results indicate partial equalisation of sex ratios across the lifespan, pronounced asymmetry in younger age groups, andconsistent delays in referral and diagnosis ages for females.
Assessment of need and practice for assistive technology and telecare for people with dementia—The ATTILA (Assistive Technology and Telecare to maintain Independent Living At home for people with dementia) trial
(Elsevier, 2019-09-03) Forsyth, Kirsty; Henderson, Catherine; Davis, Lucy; Singh Roy, Anusua; Dunk, Barbara; Curnow, Eleanor; Gathercole, Rebecca; Lam, Natalie; Harper, Emma; Leroi, Iracema; Woolham, John; Fox, Chris; O'Brien, John; Bateman, Andrew; Poland, Fiona; Bentham, Peter; Burns, Alistair; Davies, Anna; Gray, Richard; Bradley, Rosie; Knapp, Martin; Newman, Stanton; McShane, Rupert; Ritchie, Craig; Talbot, Emma; Hooper, Emma; Winson, Rachel; Scutt, Bethany; Ordonez, Victoria; Nunn, Samantha; Lavelle, Grace; Howard, Robert
Introduction The objective of this study was to define current assistive technology and telecare (ATT) practice for people with dementia living at home.
Assistive technology: Occupational therapy assessment and services for people with dementia
(SAGE, 2024-05-21) Curnow, Eleanor; Maclean, Fiona; McCormack, Brendan
Introduction: Research suggests that services are not effectively providing suitable assistive technology for people with dementia. There is a need to understand the challenges facing practitioners to identify where service changes should be focussed to improve this situation. Method: This study used an online survey to explore the experiences of 41 occupational therapists working with people with dementia, and/or assistive technology. Eight participants subsequently agreed to participate in online discussion groups. Group discussions were transcribed and checked. Data responses from group discussions and open questions in the survey were analysed thematically using the person-centred framework to identify domains supporting or obstructing effective assistive technology service delivery. Results: Forty-one occupational therapist participants described challenges to providing person-centred assistive technology services. These included restricted access to assistive technology interventions, limited knowledge regarding developments in the field, variable funding, unsupportive systems, limited relevant training and difficulties working across health and social care sectors. Conclusion: There is a need to revise the systems surrounding the provision of assistive technology for people with dementia. Occupational therapists need access to training relative to this field, and systems need to be adapted to support the provision of person-centred care by widening access to assistive technology.
Beyond Accommodations: Supporting Autistic Health Professionals. Practice based guide for employers and employees
(National Autism Implementation Team, 2024) Curnow, Eleanor; Rutherford, Marion; Maciver, Donald; Johnston, Lorna; Utley, Isabelle; Murray, M; Johnstone-Cooke, Victoria; Muggleton, J; Jenkins, N; Gray, A; Meff, T
This guide is intended to support neurodivergent people working in the healthcare sector by providing information and practical suggestions based upon the views and preferences of neurodivergent adults. Autistic people can have poor employment outcomes, are under-represented in the workforce, and often experience discrimination and poor mental health (Buckley et al., 2021; Bury et al., 2021; Wood et al., 2022). Employment is often precarious (short term, part-time, low paid) and individuals are underemployed or overqualified for their current roles. Although, as not all autistic people are diagnosed or choose to share their autistic identity, the literature may not reflect the true picture. It is therefore important that we increase our understanding of the challenges facing autistic people not only in gaining employment but within the workforce. This study draws on the experience of autistic professionals working in health and education because professionals working within health and education are well placed to become influential positive role models (Lawrence, 2019). The guidance is based on information obtained during a review of published literature and interviews with thirty-four autistic people who work in professional roles within health and education in Scotland. They were asked about their experiences of training, recruitment, and employment, particularly factors that offered them support, and factors which challenged them. They also provided recommendations for improving training, recruitment, and employment for neurodivergent people in the future. The guide was also reviewed by people working in management and human resources roles across health and education. This guide is intended to provide information which will support neurodivergent people in employment. Often adjustments to language, mindsets and actions do not cost money and can provide benefit to the whole diverse workforce. Throughout this guide we have included direct quotations obtained during interviews with autistic professionals. This guide and the research on which it is based was conducted by a team which includes autistic and non-autistic researchers. Although our focus has been on autistic people, it is well known that most autistic people experience co-occurring mental health and neurodevelopmental differences. Similar experiences are shared by people with ADHD or who identify as neurodivergent.
Beyond Accommodations: Supporting Autistic Professionals in Education. Practice based guide for employers and employees
(National Autism Implementation Team, 2024) Curnow, Eleanor; Rutherford, Marion; Maciver, Donald; Johnston, Lorna; Utley, Isabelle; Murray, M; Johnstone-Cooke, Victoria; Muggleton, J; Jenkins, N; Gray, A; Meff, T
This guide is intended to support neurodivergent people working by providing information and practical suggestions based upon the views and preferences of neurodivergent adults. Autistic people can have poor employment outcomes, are under-represented in the workforce, and often experience discrimination and poor mental health (Buckley et al., 2021; Bury et al., 2021; Wood et al., 2022). Employment is often precarious (short term, part-time, low paid) and individuals are underemployed or overqualified for their current roles. Although, as not all autistic people are diagnosed or choose to share their autistic identity, the literature may not reflect the true picture. It is therefore important that we increase our understanding of the challenges facing autistic people not only in gaining employment but within the workforce. This study draws on the experience of autistic professionals working in health and education because professionals working within health and education are well placed to become influential positive role models (Lawrence, 2019). The guidance is based on information obtained during a review of published literature and interviews with thirty-four autistic people who work in professional roles within health and education in Scotland. They were asked about their experiences of training, recruitment, and employment, particularly factors that offered them support, and factors which challenged them. They also provided recommendations for improving training, recruitment, and employment for neurodivergent people in the future. The guide was also reviewed by people working in management and human resources roles across health and education. This guide is intended to provide information which will support neurodivergent people in employment. Often adjustments to language, mindsets and actions do not cost money and can provide benefit to the whole diverse workforce. Throughout this guide we have included direct quotations obtained during interviews with autistic professionals. This guide and the research on which it is based was conducted by a team which includes autistic and non-autistic researchers. Although our focus has been on autistic people, it is well known that most autistic people experience co-occurring mental health and neurodevelopmental differences. Similar experiences are shared by people with ADHD or who identify as neurodivergent.
A brief neuro-affirming resource to support school absences for autistic learners: development and program description
(Frontiers Media, 2024-03-22) Johnston, Lorna; Maciver, Donald; Rutherford, Marion; Gray, Anna; Curnow, Eleanor; Utley, Izy
Background: Education should be inclusive, nurturing each individual’s potential, talents, and creativity. However, criticisms have emerged regarding support for autistic learners, particularly in addressing disproportionately high absence levels within this group. The demand for accessible, person-centered, neuro-affirming approaches is evident. This paper provides a program description of a structured absence support framework, developed and implemented during and following the Covid-19 pandemic. We detail creation, content, and implementation. Methods: We collaborated with stakeholders, reviewed literature and drew on existing theoretical frameworks to understand absence in autistic learners, and produced draft guidance detailing practical approaches and strategies for supporting their return to school. The final resource was disseminated nationally and made freely available online with a supporting program of work around inclusive practices. Results: The resource is rooted in neuro-affirming perspectives, rejecting reward-based systems and deficit models of autism. It includes key messages, case studies and a planning framework. It aims to cultivate inclusive practices with an autism-informed lens. The principles promoted include recognizing the child’s 24-hour presentation, parental partnership, prioritizing environmental modifications, and providing predictable, desirable and meaningful experiences at school. Feedback to date has been positive in terms of feasibility, face validity, and utility. Conclusion: This novel, freely available resource provides a concise, practical framework for addressing absence in autistic learners by cultivating a more inclusive, equitable, and supportive educational system in which autistic individuals can thrive.
Contextual factors influencing neuro-affirming practice – identifying what helps or hinders implementation in health and social care
(SAGE Publications, 2025-09-09) Gray, Anna; Johnston, Lorna; Rutherford, Marion; Curnow, Eleanor; Maciver, Donald
There has been limited research to date into contextual factors hindering or supporting the successful implementation of neuro-affirming practice in support for Autistic and otherwise neurodivergent adults. We used a Realist Evaluation approach to explore key contexts affecting neuro-affirming practice. A preliminary programme theory of key aspects of support was developed. Views on current practice were sought through structured interviews with 32 senior professionals in leadership roles within Health and Social Care services in Scotland. This study identified important contexts shaping the implementation of neuro-affirming practice for adults. Results indicate widespread professional support for modifying practice to better accommodate neuro-affirming ideas, and scope to achieve this. However, some contexts, including limited resources, restrictive eligibility criteria and rigid service structures, hinder progress. Growing demand for services was often viewed as a restrictive context, but it also offered a chance to rethink conventional, one-size-fits-all models and adopt neuro-affirming approaches. The study is important in addressing a current gap in research into professional perspectives of the contexts required to develop transdiagnostic, neuro-affirming approaches and pathways for Autistic and neurodivergent adults. The insights from this study may offer transferable practice approaches, applicable across different countries with similar healthcare contexts.
Delphi Consensus Study and Clinical Practice Guideline Development for Functional Electrical Stimulation to support upright mobility in people with an upper motor neuron lesion
(Wiley, 2023-07-11) Bulley, Catherine; Burridge, Jane; Adonis, Adine; Joiner, Sarah; Curnow, Eleanor; van der Linden, Marietta; Street, Tamsyn
Purpose A Clinical Practice Guideline (CPG) is required to provide guidance on optimal service delivery for Functional Electrical Stimulation (FES) to support upright mobility in people living with mobility difficulties due to an upper motor neuron lesion, such as stroke or multiple sclerosis. A modified Delphi consensus study was used to provide expert consensus on best practice. Methods A Steering Group supported recruitment of an Expert Panel which included a range of stakeholders who participated in up to three survey rounds. In each round panellists were asked to rate their agreement of draft statements about best practice using a 6-point Likert scale and add free text to explain their answer. Statements that achieved over 75% agree/strongly agree on the Likert scale were included in the CPG. Those that did not were revised based on free text comments and proposed in the next survey round. Results The first round included 82 statements with seven sub-statements. 65 people (84% response rate) completed survey round 1 leading to 62 statements and four sub-statements being accepted. Fifty-six people responded to survey round 2, and consensus was achieved for all remaining statements. Conclusion The accepted statements are included within the CPG and provide recommendations about who can benefit from FES and how they can be optimally supported through FES service provision. As such the CPG will support advocacy for, and optimal design of, FES services.
Diagnostic Assessment of Autism in Adults -Current Considerations in Neurodevelopmentally Informed Professional Learning with reference to ADOS-2
(Frontiers Media, 2023-10-05) Curnow, Eleanor; Utley, Izy; Rutherford, Marion; Johnston, Lorna; Maciver, Donald
Services for the assessment and diagnosis of autism in adults in the United Kingdom have been widely criticised and there is an identified need for further research in this field. There is a call for diagnostic services to become more accessible, person-centred, neurodiversity affirming, and respectful. In Scotland, there is a need for workforce development which will increase capacity for diagnostic assessment and support for adults. ADOS-2 is a gold-standard diagnostic assessment tool for autism recommended in clinical guidelines. However, diagnostic procedures such as the ADOS-2 are rooted in the medical model and do not always sit comfortably alongside the neurodiversity paradigm preferred by the autistic community. Training and educational materials need to account for the differences between these approaches and support clinicians to provide services which meet the needs of the adults they serve. The National Autism Implementation Team work alongside ADOS-2 training providers to support clinicians in Scotland, to provide effective diagnostic assessment within a respectful environment. The team engaged with clinicians who had attended ADOS training to identify areas of uncertainty or concern. Training materials were developed to support ADOS assessors to incorporate key principles including 'nothing about us without us;' 'difference not deficit;' 'environment first;' 'diagnosis matters,' 'language and mindsets matter;' and 'a neurodevelopmental lens,' to support the provision of neurodiversity affirming practice. The National Autism Implementation Team also provided examples of actions which can be undertaken by clinicians to enhance the assessment experience. Training materials are based on research evidence and clinical experience.
Differences in assistive technology installed for people with dementia living at home who have wandering and safety risks
(BMC, 2021-10-30) Curnow, Eleanor; Rush, Robert; Górska, Sylwia; Forsyth, Kirsty
Background: Assistive Technology for people with dementia living at home is not meeting their care needs. Reasons for this may be due to limited understanding of variation in multiple characteristics of people with dementia including their safety and wandering risks, and how these affect their assistive technology requirements. This study therefore aimed to explore the possibility of grouping people with dementia according to data describing multiple person characteristics. Then to investigate the relationships between these groupings and installed Assistive Technology interventions. Methods: Partitioning Around Medoids cluster analysis was used to determine participant groupings based upon secondary data which described the person characteristics of 451 people with dementia with Assistive Technology needs. Relationships between installed Assistive Technology and participant groupings were then examined. Results: Two robust clustering solutions were identified within the person characteristics data. Relationships between the clustering solutions and installed Assistive Technology data indicate the utility of this method for exploring the impact of multiple characteristics on Assistive technology installations. Living situation and caregiver support influence installation of assistive technology more strongly than level of risk or cognitive impairment. People with dementia living alone received different AT from those living with others. Conclusions: Results suggest that caregiver support and the living situation of the person with dementia influence the type and frequency of installed Assistive Technology. Reasons for this include the needs of the caregiver themselves, the caregiver view of the participants’ needs, caregiver response to alerts, and the caregiver contribution to the assistive technology assessment and selection process. Selection processes should be refined to account for the needs and views of both caregivers and people with dementia. This will require additional assessor training, and the development of validated assessments for people with dementia who have additional impairments. Policies should support the development of services which provide a wider range of AT to facilitate interventions which are focused on the needs of the person with dementia.
AN EXPLORATORY SECONDARY DATA ANALYSIS OF THE IMPACT OF HETEROGENEITY ON ASSISTIVE TECHNOLOGY TO REDUCE SAFETY AND WANDERING RISKS FOR PEOPLE WITH DEMENTIA LIVING AT HOME
(Queen Margaret University, Edinburgh, 2020) Curnow, Eleanor
Introduction: There is an acknowledged gap between the potential and achieved benefit of assistive technology in the care of people with dementia. In order to make better use of this resource, this research aimed to investigate the heterogeneity of population characteristics of people with dementia living at home who have safety and wandering risks and how this is related to assistive technology recommended and installed to meet their needs. Methods: This research consisted of two studies; a systematic review and secondary data analysis. Initially, published quantitative data describing the needs of people with dementia living at home was subjected to meta-analysis in order to explore the prevalence of needs reported by people with dementia and their caregivers and associated heterogeneity. Following univariate analyses, ordinal models were developed using secondary data which described the needs of people with dementia, and their level of wandering and safety risk, to explore the relationship between needs and risks in this population. The possibility of grouping participants according to data describing multiple needs, predisposing characteristics and enabling resources was investigated using cluster analysis. Associations between these groups and recommended and installed Assistive Technology were investigated. Results: Prevalence estimates for twenty-four needs reported by people with dementia and their caregivers were provided for the first time. Heterogeneity was associated with the person reporting the needs and age of onset. Level of need was often not recorded in the dataset indicating limited assessment. Wandering risks were shown to be associated with posture and mobility, routine and cognition needs, whilst safety risks were associated with posture and mobility, and problem-solving needs. Partitioning Around Medoids cluster analysis demonstrated that robust clustering solutions could be created from data describing participants. Clustering solutions were then validated through exploring their association with recommended and installed Assistive Technology data and the published literature. Caregiver support and living situation impact Assistive Technology installed for people with dementia. Discussion: This research advances understanding of the impact that needs, safety and wandering risks, caregiver support and the living situation of the person with dementia have on variation in the assistive technology interventions recommended and installed for people with dementia. Results have implications for needs assessment and for the tailoring of Assistive Technology for this population. Keywords: dementia, assistive technology, community dwelling, meta-analysis, cluster analysis, ordinal regression, wandering, safety, risk, needs.
Exploring the needs of people with dementia living at home reported by people with dementia and informal caregivers: A systematic review and meta-analysis
(Taylor & Francis, 2019-12-03) Curnow, Eleanor; Rush, Robert; Maciver, Donald; Górska, Sylwia; Forsyth, Kirsty
Objectives: To provide prevalence estimates of needs of people with dementia living at home, and to determine sources of variation associated with needs for this population.
Frame Running as a community-based exercise option for young people with moderate-to-severe walking impairments: a feasibility study
(Taylor & Francis Group, 2024-12-29) Andreopoulou, Georgia; van der Linden, Marietta; Theis, Nicola; Thacker, Elizabeth; McEwan, Gary; Koufaki, Pelagia; Jagadamma, Kavi; Curnow, Eleanor; Phillips, Shaun; van Schie, Petra E.M.; Ryan, Jennifer M.
Frame Running is an adapted community-based exercise option for people with moderate-to-severe walking impairments. This mixed-methods study aimed to examine the feasibility of 1) community-based Frame Running by young people with moderate-to-severe walking impairments and 2) conducting future studies on the impact of Frame Running on functional mobility and cardiometabolic disease risk factors. Weekly training sessions and data collection occurred in two sites. Quantitative data were collected at baseline, and after 12 (both sites) and 24 (one site) weeks of training, followed by interviews or focus groups. Consent and retention rates, attendance and outcome measure completion rates were calculated. Qualitative data were analysed abductively using concurrent inductive and deductive thematic content analysis. Data for the assessments at baseline, 12 and 24 weeks were available for 23, 15 and 5 participants respectively. Participants were aged 5-25 with most diagnosed with cerebral palsy (GMFCS II-IV). Consent, intervention drop-out and adherence rates were 55%, 17% and 83% respectively with no serious adverse events. Outcome measure completion rates ranged between 60% and 98%. Themes related to facilitators to participating in Frame Running were mostly identified in the personal and social domains with barriers more common in the environmental and policy domains. The study results support the existing evidence that Frame Running is a safe and acceptable community-based exercise option for those with moderate-to-severe walking impairments. Themes identified in personal, social, environmental, and policy domains can guide the implementation of community-based Frame Running participation. Our feasibility data can inform the design of future definitive studies.
An interdisciplinary nationwide complex intervention for lifespan neurodevelopmental service development: Underpinning principles and realist programme theory
(Frontiers Media, 2023-01-30) Maciver, Donald; Rutherford, Marion; Johnston, Lorna; Curnow, Eleanor; Boilson, Marie; Murray, Mairéad
Background: People seeking support for neurodevelopmental differences often report waiting too long for assessment and diagnosis, as well as receiving inadequate support in educational and health settings. The National Autism Implementation Team (NAIT) developed a new national improvement programme in Scotland, focusing on assessment, diagnosis, educational inclusion, and professional learning. The NAIT programme was conducted within health and education services across the lifespan for a range of neurodevelopmental differences, including autism, developmental coordination disorder, developmental language disorder, and attention deficit hyperactivity disorder. NAIT included a multidisciplinary team, with the involvement of an expert stakeholder group, clinicians, teachers, and people with lived experience. This study explores how the NAIT programme was planned, delivered, and received over three years. Design: We performed a retrospective evaluation. We collected data from review of programme documents, consultation with programme leads and consultation with professional stakeholders. A theory-based analysis was completed, drawing on the Medical Research Council Framework for developing and evaluating complex interventions, and realist analysis methods. We developed a programme theory of the contexts (C), mechanisms (M), and outcomes (O) influencing the NAIT programme, based on comparison and synthesis of evidence. A key focus was on identifying the factors that contributed to the successful implementation of NAIT activities across different domains, including practitioner, institutional and macro levels. Results: On synthesis of the data, we identified the key principles underlying the NAIT programme, the activities and resources utilised by the NAIT team, 16 aspects of context, 13 mechanisms, and 17 outcome areas. Mechanisms and outcomes were grouped at practitioner level, service level and macro level. The programme theory is pertinent to observed practice changes across all stages of referral, diagnosis and support processes within health and education services for neurodivergent children and adults. Conclusions: This theory-informed evaluation has resulted in a clearer and more replicable programme theory that can be used by others with similar aims. This paper illustrates the value of NAIT, as well as realist and complex interventions methodologies as tools for policymakers, practitioners, and researchers.
Learning from the experiences of autistic professionals working in health and education
(Mary Ann Liebert, 2025-01-20) Curnow, Eleanor; Maciver, Donald; Johnston, Lorna; Murray, Mairead; Johnstone-Cooke, Victoria; Utley, Izy; Jenkins, Natalie; Meff, Tamsin; Muggleton, Joshua; Rutherford, Marion
Background: This study aimed to explore the experiences of autistic professionals working in the public sector in Scotland and investigate the factors that supported them in achieving employment in their chosen career. Methods: We interviewed 34 autistic adults employed in professional roles in the health and education sectors in Scotland about their successes and challenges during training, recruitment, and employment. Interview conversations of 60–90-minute duration were transcribed verbatim. The research team, which included autistic and non-autistic researchers, conducted inductive thematic analysis. Results: Resultant themes included complexity of disclosure; navigating differences in social communication and across employment stages; and control of the environment. Autistic professionals face inequalities and unsupportive environments. Participants described multifaceted decision-making processes behind choices to disclose or withhold their autism diagnosis, which could determine their right to workplace accommodations or provoke unfavorable treatment. The styles of communication preferred by colleagues could engender misunderstanding and lead to challenges negotiating social situations, recruitment processes, and organizational culture. Participants’ needs and preferences for predictability and routine required them to use strategies to overcome the negative impacts of suboptimal social and physical environments. Conclusion: Findings confirm the importance of acceptance and inclusion and demonstrate that there is a need for culture change within public sector education and health workplaces to improve accessibility. Applying minor changes to the environment and individual communication styles can enhance workplace conditions for autistic employees.
Living with and breaking a cycle of illness: A secondary qualitative data analysis of women’s experiences with long COVID
(MDPI, 2022-06-17) Jackes, Alison; Malfesi, Michael; Curnow, Eleanor; Tyagi, Vaibhav; Bulley, Catherine
Long COVID is an emerging condition, with early evidence suggesting it impacts women at a greater rate than men. As we seek to understand long COVID, it is important to consider the holistic impacts of this condition. Therefore, a qualitative perspective was used to explore the experience of those living with long COVID. Eight people from Scotland, who presented as women and Caucasian, participated in this study. A thematic analysis, from a phenomenological perspective, was conducted on data collected during two semi-structured focus groups. Five central themes emerged including: (1) a prolonged, varied, and debilitating illness; (2) barriers to care; (3) predominantly negative experiences of care; (4) fighting to carry the burden; and (5) looking to the future. These themes are linked through an explanatory theory describing a cycle of illness, the work required to break the cycle, and participant’s aims to regain their health and advocate for their condition. The thematic results are consistent with two prior qualitative studies on long COVID, creating a relatively consistent picture of individuals’ experiences during the pandemic. Additionally, the developed theory shares commonalities with individuals living with chronic illness, providing further insight into participants’ experiences.
Mental health in autistic adults: a rapid review of prevalence of psychiatric disorders and umbrella review of the effectiveness of interventions within a neurodiversity informed perspective
(Public Library of Science, 2023-07-13) Curnow, Eleanor; Rutherford, Marion; Maciver, Donald; Johnston, Lorna; Prior, Susan; Boilson, Marie; Shah, Premal; Jenkins, Natalie; Meff, Tamsin
Background Autistic adults have high risk of mental ill-health and some available interventions have been associated with increased psychiatric diagnoses. Understanding prevalence of psychiatric diagnoses is important to inform the development of individualised treatment and support for autistic adults which have been identified as a research priority by the autistic community. Interventions require to be evaluated both in terms of effectiveness and regarding their acceptability to the autistic community. Objective This rapid review identified the prevalence of psychiatric disorders in autistic adults, then systematic reviews of interventions aimed at supporting autistic adults were examined. A rapid review of prevalence studies was completed concurrently with an umbrella review of interventions. Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines were followed, including protocol registration (PROSPERO#CRD42021283570). Data sources MEDLINE, CINAHL, PsycINFO, and Cochrane Database of Systematic Reviews. Study eligibility criteria English language; published 2011–2022; primary studies describing prevalence of psychiatric conditions in autistic adults; or systematic reviews evaluating interventions for autistic adults. Appraisal and synthesis Bias was assessed using the Prevalence Critical Appraisal Instrument and AMSTAR2. Prevalence was grouped according to psychiatric diagnosis. Interventions were grouped into pharmacological, employment, psychological or mixed therapies. Strength of evidence for interventions was assessed using GRADE (Grading of Recommendations, Assessment, Development and Evaluation). Autistic researchers within the team supported interpretation. Results Twenty prevalence studies were identified. Many included small sample sizes or failed to compare their sample group with the general population reducing validity. Prevalence of psychiatric diagnoses was variable with prevalence of any psychiatric diagnosis ranging from 15.4% to 79%. Heterogeneity was associated with age, diagnosis method, sampling methods, and country. Thirty-two systematic reviews of interventions were identified. Four reviews were high quality, four were moderate, five were low and nineteen critically low, indicating bias. Following synthesis, no intervention was rated as ‘evidence based.’ Acceptability of interventions to autistic adults and priorities of autistic adults were often not considered. Conclusions There is some understanding of the scope of mental ill-health in autism, but interventions are not tailored to the needs of autistic adults, not evidence based, and may focus on promoting neurotypical behaviours rather than the priorities of autistic people.
Person-centered healthcare practice in a pandemic context: An exploration of people's experience of seeking healthcare support
(Frontiers, 2021-09-09) Curnow, Eleanor; Tyagi, Vaibhav; Salisbury, Lisa; Stuart, Kim; Melville-Jóhannesson, Barbara; Nicol, Kath; McCormack, Brendan; Dewing, Jan; Magowan, Ruth; Sagan, Olivia; Bulley, Catherine
Background: The recent COVID-19 pandemic increased pressure upon healthcare resources resulting in compromised health services. Enforced national lockdown led to people being unable to access essential services in addition to limiting contact with social support networks. The novel coronavirus, and subsequent condition known as long covid were not well-understood and clinicians were not supported by existing guidelines or pathways. Our study explored people's experiences of healthcare during this period with a person-centered “lens.”
Support after COVID-19 study: a mixed-methods cross-sectional study to develop recommendations for practice
(BMJ Publishing Group, 2022-08-26) Bulley, Catherine; Tyagi, Vaibhav; Curnow, Eleanor; Nicol, Kath; Salisbury, Lisa; Stuart, Kim; McCormack, Brendan; Magowan, Ruth; Sagan, Olivia; Dewing, Jan
Objectives of study stage 1 were to: explore people’s experiences of illness due to COVID-19 while feeling socially isolated or socially isolating; identify perceptions of what would support recovery; and synthesise insights into recommendations for supporting people after COVID-19. Study stage 2 objectives were to engage stakeholders in evaluating these recommendations and analyse likely influences on access to the support identified. Design: A two-stage, multimethod cross-sectional study was conducted from a postpositivist perspective. Stage 1 included an international online survey of people’s experiences of illness, particularly COVID-19, in isolation (n=675 full responses). Stage 2 involved a further online survey (n=43), two tweetchats treated as large online focus groups (n=60 and n=27 people tweeting), two smaller focus groups (both n=4) and one interview (both using MS teams). Setting: Stage 1 had an international emphasis, although 87% of respondents were living in the UK. Stage 2 focused on the UK. Participants: Anyone aged 18+ and able to complete a survey in English could participate. Stage 2 included health professionals, advocates and people with lived experience. Main outcome measures: Descriptive data and response categories derived from open responses to the survey and the qualitative data. Results: Of those responding fully to stage 1 (mean age 44 years); 130 (19%) had experienced COVID-19 in isolation; 45 had recovered, taking a mean of 5.3 (range 1–54) weeks. 85 did not feel they had recovered; fatigue and varied ‘other’ symptoms were most prevalent and also had most substantial negative impacts. Our draft recommendations were highly supported by respondents to stage 2 and refined to produce final recommendations. Conclusions: Recommendations support access to progressive intensity and specialism of support, addressing access barriers that might inadvertently increase health inequalities. Multidisciplinary collaboration and learning are crucial, including the person with COVID-19 and/or Long Covid in the planning and decision making throughout.
The experiences of autistic professionals working in health and education: A systematic review
(Mary Ann Liebert, 2025) Curnow, Eleanor; Maciver, Donald; Meff, Tamsin; Muggleton, Joshua; Johnston, Lorna; Gray, Anna; Day, Helen; Kourti, Marianthi; Utley, Izy; Rutherford, Marion