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1.
J Prim Care Community Health ; 15: 21501319241251938, 2024.
Article in English | MEDLINE | ID: mdl-38708679

ABSTRACT

INTRODUCTION: People with intellectual disability are less likely to participate in breast screening than people without intellectual disability. They experience a range of barriers to accessing breast screening, however, there is no consensus on strategies to overcome these barriers. Our objective was to reach consensus on the strategies required for accessible breast screening for people with intellectual disability. METHODS: Fourteen experts participated in a modified on-line Delphi that used Levesque's model of health care access as the theoretical framework. At the end of each round descriptive and thematic analyses were completed. Data was then triangulated to determine if consensus was reached. RESULTS: After 3 rounds, 9 strategies were modified, 24 strategies were added and consensus was reached for 52 strategies across the 5 dimensions of access. Key areas of action related to (i) decision making and consent, (ii) accessible information, (iii) engagement of peer mentors, (iv) service navigators, and (v) equipping key stakeholders. CONCLUSIONS: The resulting strategies are the first to articulate how to make breast screening accessible and can be used to inform health policy and quality improvement practices.


Subject(s)
Breast Neoplasms , Delphi Technique , Early Detection of Cancer , Health Services Accessibility , Intellectual Disability , Humans , Female , Intellectual Disability/diagnosis , Breast Neoplasms/diagnosis , Early Detection of Cancer/methods , Decision Making , Mammography
2.
Aust J Rural Health ; 2024 May 08.
Article in English | MEDLINE | ID: mdl-38715521

ABSTRACT

OBJECTIVE: To explore the preparedness and training needs of a regional public mental health workforce to support people with intellectual disability and mental ill health. SETTING AND PARTICIPANTS: Staff from a regional public mental health service in Victoria, Australia. DESIGN: 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. RESULTS: 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. CONCLUSION: 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.

3.
Res Sq ; 2024 May 02.
Article in English | MEDLINE | ID: mdl-38746362

ABSTRACT

Individual sensitivity to environmental exposures may be genetically influenced. This genotype-by-environment interplay implies differences in phenotypic variance across genotypes. However, environmental sensitivity genetic variants have proven challenging to detect. GWAS of monozygotic twin differences is a family-based variance analysis method, which is more robust to systemic biases that impact population-based methods. We combined data from up to 21,792 monozygotic twins (10,896 pairs) from 11 studies to conduct the largest GWAS meta-analysis of monozygotic phenotypic differences in children and adolescents/adults for seven psychiatric and neurodevelopmental phenotypes: attention deficit hyperactivity disorder (ADHD) symptoms, autistic traits, anxiety and depression symptoms, psychotic-like experiences, neuroticism, and wellbeing. The SNP-heritability of variance in these phenotypes were estimated (h2: 0% to 18%), but were imprecise. We identified a total of 13 genome-wide significant associations (SNP, gene, and gene-set), including genes related to stress-reactivity for depression, growth factor-related genes for autistic traits and catecholamine uptake-related genes for psychotic-like experiences. Monozygotic twins are an important new source of evidence about the genetics of environmental sensitivity.

4.
EBioMedicine ; 103: 105096, 2024 May.
Article in English | MEDLINE | ID: mdl-38574408

ABSTRACT

BACKGROUND: Type 2 diabetes (T2D) susceptibility is influenced by genetic and environmental factors. Previous findings suggest DNA methylation as a potential mechanism in T2D pathogenesis and progression. METHODS: We profiled DNA methylation in 248 blood samples from participants of European ancestry from 7 twin cohorts using a methylation sequencing platform targeting regulatory genomic regions encompassing 2,048,698 CpG sites. FINDINGS: We find and replicate 3 previously unreported T2D differentially methylated CpG positions (T2D-DMPs) at FDR 5% in RGL3, NGB and OTX2, and 20 signals at FDR 25%, of which 14 replicated. Integrating genetic variation and T2D-discordant monozygotic twin analyses, we identify both genetic-based and genetic-independent T2D-DMPs. The signals annotate to genes with established GWAS and EWAS links to T2D and its complications, including blood pressure (RGL3) and eye disease (OTX2). INTERPRETATION: The results help to improve our understanding of T2D disease pathogenesis and progression and may provide biomarkers for its complications. FUNDING: Funding acknowledgements for each cohort can be found in the Supplementary Note.


Subject(s)
CpG Islands , DNA Methylation , Diabetes Mellitus, Type 2 , Humans , Diabetes Mellitus, Type 2/genetics , Female , Male , Genome-Wide Association Study , Genetic Predisposition to Disease , Middle Aged , Epigenesis, Genetic , Otx Transcription Factors/genetics , Otx Transcription Factors/metabolism , Diabetes Complications/genetics , Gene Expression Profiling
5.
Genes (Basel) ; 15(4)2024 Apr 16.
Article in English | MEDLINE | ID: mdl-38674429

ABSTRACT

The contributions of genetic variation and the environment to gene expression may change across the lifespan. However, few studies have investigated the heritability of blood gene expression in older adults. The current study therefore aimed to investigate this question in a community sample of older adults. A total of 246 adults (71 MZ and 52 DZ twins, 69.91% females; mean age-75.79 ± 5.44) were studied. Peripheral blood gene expression was assessed using Illumina microarrays. A heritability analysis was performed using structural equation modelling. There were 5269 probes (19.9%) from 4603 unique genes (23.9%) (total 26,537 probes from 19,256 genes) that were significantly heritable (mean h2 = 0.40). A pathway analysis of the top 10% of significant genes showed enrichment for the immune response and ageing-associated genes. In a comparison with two other gene expression twin heritability studies using adults from across the lifespan, there were 38 out of 9479 overlapping genes that were significantly heritable. In conclusion, our study found ~24% of the available genes for analysis were heritable in older adults, with only a small number common across studies that used samples from across adulthood, indicating the importance of examining gene expression in older age groups.


Subject(s)
Aging , Humans , Female , Aged , Male , Aged, 80 and over , Aging/genetics , Twins, Dizygotic/genetics , Twins, Monozygotic/genetics , Gene Expression/genetics
6.
BMJ Ment Health ; 27(1)2024 Mar 27.
Article in English | MEDLINE | ID: mdl-38538031

ABSTRACT

BACKGROUND: Mental health services are available for young people involved with the criminal justice system. However, they have unmet mental health needs after the expiration of criminal justice supervision. OBJECTIVE: To determine the incidence rate and identify predictors of psychiatric hospitalisations within 24 months after the expiration of criminal justice supervision among young people involved with the New South Wales (NSW) criminal justice system. METHODS: Retrospective data from 1556 individuals aged 14-22 years who participated in four surveys of justice-involved young people in NSW were harmonised and linked to four NSW data collections. We calculated the incidence rates of psychiatric hospitalisations within 24 months postsupervision and identified predictors of these hospitalisations using a competing risks regression analysis. RESULTS: Within 24 months postsupervision, 11.4% had a psychiatric hospitalisation compared with 3.5% during supervision. 20.7% of those admitted had a known history of mental illness and engaged with community-based and outpatient mental health services postsupervision. Predictors of psychiatric hospitalisations were: female sex (adjusted subdistribution HR (asHR) 1.84, 95% CI 1.24 to 2.73); previous incarceration (highest asHR for ≥4 episodes 1.67, 95% CI 1.01 to 2.78); head injury (asHR 1.63, 95% CI 1.20 to 2.21); personality disorder (asHR 3.66, 95% CI 2.06 to 6.48) and alcohol and substance use disorder (asHR 1.89, 95% CI 1.29 to 2.77). CONCLUSION: Justice-involved youth have higher rates of psychiatric admissions after criminal justice supervision. Engagement with mental health services postsupervision is important in addressing emerging or persisting mental health needs.


Subject(s)
Criminal Law , Substance-Related Disorders , Adolescent , Humans , Female , Retrospective Studies , Substance-Related Disorders/epidemiology , Hospitalization , Australia/epidemiology
8.
Australas J Ageing ; 2024 Jan 13.
Article in English | MEDLINE | ID: mdl-38217882

ABSTRACT

OBJECTIVES: Physical decline can be associated with the onset of depressive symptoms in later life. This study aimed to identify physical and lifestyle risk factors for depressive symptom trajectories in community-dwelling older adults. METHODS: Participants were 553 people aged 70-90 years who underwent baseline physical, psychological and lifestyle assessments. Group-based trajectory analysis was used to identify patterns of depressive symptom development over 6 years of follow-up. Strengths of associations between baseline functional test performances and depressive symptom trajectories were evaluated with univariable ordinal models. Subsequently, the adjusted cumulative odds ratio for the association between identified risk factors, demographic factors and baseline anti-depressant use were measured using multivariable ordinal logistic regression. RESULTS: Three distinct depressive symptom trajectories were identified: a low-and-stable course (10% of participants), a low-and-increasing course (81%) and a moderate-and-increasing course (9%). Timed Up and Go test time was the strongest risk factor of depressive symptom trajectory, followed by Five Times Sit-to-Stand test performance, planned physical activity levels, and knee extension strength (adjusted standardised ORs 1.65, 95% CI 1.34-2.04; 1.44, 95% CI 1.16-1.77; 1.44, 95% CI 1.17-1.76 and 1.41, 95% CI 1.15-1.73 respectively). After adjusting for age, sex, body mass index and baseline anti-depressant use, Timed Up and Go test performance and knee extension strength were independently and significantly associated with depressive trajectories. CONCLUSIONS: Timed Up and Go test times, Five Times Sit-to-Stand test performance, planned physical activity levels and knee extension strength are associated with three discrete depressive symptom trajectories. These clinical tests may help identify older adults aged 70-90 years at risk of developing depressive symptoms and help guide subsequent strength and mobility interventions.

9.
Autism ; 28(2): 301-315, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37161777

ABSTRACT

LAY ABSTRACT: This study looked at how Australian autistic and non-autistic adults experience barriers to healthcare. We asked autistic and non-autistic adults to complete the Barriers to Healthcare Checklist Short-Form (BHC). We analysed data from 263 autistic adults and 70 non-autistic adults. We found that autistic adults experienced more barriers to healthcare than non-autistic adults. Gender diversity, feeling more anxious, having greater disability and feeling unsatisfied with social support contributed to barriers to healthcare in autistic participants. We recommend interventions such as developing and implementing a national action plan, similar to the National Roadmap for Improving the Health of People with Intellectual Disability (2021) to reduce barriers and address unmet healthcare needs of Australian autistic adults. We also recommend working with autistic adults to develop new policies and strategies, implementing environmental adaptations to health care facilities, and increasing Autism education opportunities for health professionals to address gaps in knowledge.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Humans , Australia , Anxiety , Health Services Accessibility
10.
Autism Adulthood ; 5(4): 423-436, 2023 Dec 01.
Article in English | MEDLINE | ID: mdl-38116050

ABSTRACT

Background: Receiving an autism diagnosis in adulthood often leads to improved self-understanding and deeper self-reflection, which can have major impacts on people's well-being and sense of identity. However, autism diagnosis also exposes individuals to societal stigma, which may become internalized over time. This study aimed to explore relationships between psychological and service-related impacts of diagnosis and internalized stigma using mixed methods. Methods: One hundred forty-three autistic adults completed an online survey involving impact of diagnosis domains of Self-Understanding, Well-being, Clinician Support, and Service Access, internalized stigma, and open-ended questions on beliefs about autism diagnosis. Results: On average, participants reported mild levels of internalized stigma and positive impact of diagnosis in all domains except Service Access. Older age at diagnosis was positively associated with Clinician Support only. The path analysis model showed positive relationships between impact of diagnosis domains, with Self-Understanding having a positive effect on Well-being via lowered internalized stigma. We developed four themes of Continuity and Acceptance, Late Diagnosis as Regret and Freedom, Coming to Terms with Being Autistic, and Stigma Resistance from qualitative data. Conclusions: Self-understanding protects against the development of internalized autism stigma. Diagnosticians and service providers play an important role in improving self-understanding and well-being in autistic adults. More research is needed to understand the role of age at diagnosis and mechanisms behind positive identity development after autism diagnosis.


Why is this an important issue?: Receiving an autism diagnosis in adulthood can help people understand themselves better. This can help them feel better too. Autistic adults' experiences during diagnosis and their experience with support services after diagnosis might also affect how they think and feel about themselves. There are many negative beliefs about autism in society. Some autistic people might think more negatively about themselves because of these beliefs. What was the purpose of this study?: This study tries to understand relationships between the impact of autism diagnosis and negative beliefs about autism in autistic adults. We also wanted to know if age at diagnosis is related to these factors. What did the researcher do?: One hundred forty-five autistic adults filled in an online survey. We asked questions about the impact of autism diagnosis on four aspects: how they understand themselves, their well-being, experiences with the professional who gave the diagnosis, and support services after diagnosis. We also asked questions about autistic adults' negative beliefs about autism. We used the answers to these questions to test a model of how we think these factors might affect each other: good experiences with the professional who gave the diagnosis help with self-understanding and getting support services. Better self-understanding helps autistic adults think less negatively about autism. Better self-understanding, less negative thinking about autism, and better support services all help improve well-being after diagnosis.We asked autistic adults some general questions about the effect of autism diagnosis on their lives. We asked autistic adults whether they think being diagnosed at an older or younger age made a difference. We also asked autistic adults about negative beliefs that some autistic people might have about their autism. We then read these answers and made a list of the important and common ideas in people's answers. What were the results of the study?: In general, autism diagnosis improved autistic adults' self-understanding and well-being. Most autistic adults had good experiences with the diagnosing professional but did not have good support services after diagnosis. On average, autistic adults had a small amount of negative beliefs about autism. People diagnosed at older ages had better support from the health professional who diagnosed them. We did not find any other differences between people diagnosed at different ages. We successfully tested our model of relationships between self-understanding, well-being, experiences with the diagnosing professional, experience of support services, and negative beliefs about autism.Autistic adults said getting the diagnosis did not change who they are. It helped them understand and accept themselves. Some late-diagnosed autistic adults wished they were diagnosed earlier. Others said being diagnosed younger might make you think less of yourself because there was less autism acceptance in society at that time. Both early-diagnosed and late-diagnosed autistic adults said growing older helped them understand what it means to be autistic. Autistic adults also talked about autistic and non-autistic people's negative beliefs about autism. Some autistic adults said that negative beliefs are caused by society not being accepting enough, not because autism itself is bad. This thinking helps autistic adults think more positively about autism. What do these findings add to what was already known?: This is the first study to measure and develop a model of the relationships between impacts of diagnosis and negative beliefs about autism in autistic adults. What are potential weaknesses in this study?: Most people who did our survey were diagnosed as teens and adults. It was hard to measure the effects of age at autism diagnosis because we did not have enough participants diagnosed at young ages. The people who did our survey were mostly female, White, spoke English only, and did not have intellectual disability. This means that the people in our study are not a good representation of all autistic adults in Australia. The questions we used to measure negative beliefs about autism were originally made for people with mental illness. There might be negative beliefs specific to autism that we did not measure. How will these findings help autistic adults now or in the future?: Our findings tell professionals who diagnose or support autistic adults that it is important to help autistic adults understand what it means to be autistic in a positive way. This will help autistic adults form more positive beliefs about autism and live happier lives.

11.
J Contin Educ Nurs ; 54(12): 554-560, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37855824

ABSTRACT

BACKGROUND: People with autism spectrum disorder and/or intellectual disability have some of the worst health outcomes of any population group. Internationally, it has been identified that RNs are not adequately prepared to provide care to these groups through mainstream health care services. METHOD: A cross-sectional online evaluation survey of participants who completed learning to build the capacity of RNs to care for people with autism spectrum disorder and/or intellectual disability was conducted. RESULTS: The learning site was found to be easily accessible and engaging, and it facilitated knowledge construction. A statistically significant increase in self-reported comfort, confidence, and preparedness compared with the sample of RNs in a national survey conducted before the site launch was identified. CONCLUSION: This online continuing professional development program facilitated RNs' perceived comfort, confidence, and preparedness to care for people with autism spectrum disorder and/or intellectual disability. Findings suggest the merit of high-quality online continuing professional development programs to fill this educational gap. [J Contin Educ Nurs. 2023;54(12):554-560.].


Subject(s)
Autism Spectrum Disorder , Intellectual Disability , Nurses , Child , Humans , Developmental Disabilities , Cross-Sectional Studies , Capacity Building , Australia
12.
Assessment ; : 10731911231196486, 2023 Sep 12.
Article in English | MEDLINE | ID: mdl-37700577

ABSTRACT

No tools quantify the experience, psychological, and practical impact of receiving a diagnosis from a non-deficit perspective. Autism is increasingly late diagnosed in adulthood. The Impact of Diagnosis Scale (IODS) was initially developed for borderline personality disorder. We aimed to develop a revised version suitable for autistic adults and potentially other diagnostic groups. Following a trial of a preliminary revision, the researchers and autistic research advisors co-produced an expanded pool of 46 items, scored on 7-point Likert-type scale, within 6 hypothesized domains. Scale reduction processes were applied to data from 125 formally diagnosed autistic adults. Following iterative rounds of factor analysis using maximum likelihood estimation with Promax rotation, 22 items were retained across 4 domains to comprise the IODS-R. The IODS-R adds new understanding to the experience of receiving an autism diagnosis in adulthood. It may be useful for evaluating diagnostic services and other diagnostic groups.

13.
J Appl Res Intellect Disabil ; 36(6): 1354-1362, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37688365

ABSTRACT

INTRODUCTION: Access to health information is a right for all people. Easy read information is one strategy used to make information accessible for people with intellectual disability. This research explored how easy read is used and the ways accessible information can address access barriers, with a focus on Australian mental health services. METHODS: Semi-structured interviews were conducted across four sites to explore how easy read was used. Participants (n = 49) were easy read users, health practitioners and staff from services providing mental health care in New South Wales, Australia. An integrated health literacy framework was used to analyse data. RESULTS: Most mental health staff did not use easy read or other accessible information, and did not consistently offer people with intellectual disability opportunities to understand, appraise and apply health information. This investigation confirmed the limited availability of accessible information resources, including easy read, and the importance of relationships of support when accessing health information. CONCLUSION: People with intellectual disability did not routinely have access to mental health information. Substantial change is required to address this disparity. IMPLICATIONS: Agency policy and processes require change to support staff practices that uphold the right to information. Inclusive practices that incorporate using easy read in health contexts, including mental health, are needed to facilitate change.


Subject(s)
Intellectual Disability , Mental Health Services , Humans , Intellectual Disability/psychology , Australia , Mental Health , Reading
14.
J Psychiatr Res ; 164: 51-58, 2023 08.
Article in English | MEDLINE | ID: mdl-37315354

ABSTRACT

BACKGROUND: Premature mortality in people with mental illness is well-documented, yet deaths during inpatient psychiatric care have received little research attention. This study investigates mortality rates and causes of death during inpatient psychiatric care in New South Wales (NSW), Australia. Risk factors for inpatient death were also explored. METHODS: A retrospective cohort study using linked administrative datasets with complete capture of psychiatric admissions in NSW from 2002 to 2012 (n = 421,580) was conducted. Univariate and multivariate random-effects logistic regression analyses were used to explore risk factors for inpatient death. RESULTS: The mortality rate during inpatient psychiatric care was 1.12 deaths per 1000 episodes of care and appeared to decline over the study period. Suicide accounted for 17% of inpatient deaths, while physical health causes accounted for 75% of all deaths. Thirty percent of these deaths were considered potentially avoidable. In the multivariate model, male sex, unknown address and several physical health diagnoses were associated with increased deaths. CONCLUSIONS: The mortality rate and number of avoidable deaths during inpatient psychiatric care were substantial and warrant further systemic investigation. This was driven by a dual burden of physical health conditions and suicide. Strategies to improve access to physical health care on psychiatric inpatient wards and prevent inpatient suicide are necessary. A coordinated approach to monitoring psychiatric inpatient deaths in Australia is not currently available and much needed.


Subject(s)
Inpatients , Semantic Web , Humans , Male , New South Wales/epidemiology , Retrospective Studies , Cause of Death , Australia
15.
J Clin Nurs ; 32(17-18): 6000-6011, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37149737

ABSTRACT

AIM: To scope the international literature about registered nurses delegated models of care to unlicenced workers, identify gaps and reflect upon how the evidence relates to nursing in multiple contexts. DESIGN: Scoping review of the peer reviewed literature from the year 2000 onwards, using the PRISMA-ScR checklist. METHODS: The study searched the following databases in February 2022: CINAHL, Medline, ProQuest, and SCOPUS, and included keywords, Boolean operators and subject headings relevant to registered nurses delegating the provision of care to unlicenced workers. RESULTS: A total of 49 articles met the eligibility criteria for this study, and relevant data were extractedThree models of delegation were highlighted within the literature: direct, indirect and a mixture of both. The data highlighted that direct delegation mainly occurred in acute contexts, with delegation decreasing with increasing patient acuity and/or complexity but the threshold of when this would occur was not clear. There was one intervention study that measured patient outcomes which could aid in the determination of what is effective delegation. For studies that did report on it (n = 6), there were few examples of better patient outcomes in cases where care was delegated from registered nurses to unlicenced workers. CONCLUSIONS: The scoping review highlighted heterogeneity in practice areas and methods of delegation practice. A key gap in literature is the absence of studies focusing on patient outcomes, with a clear baseline to measure and identify effective delegation practices. Additionally, the legal and logistical implications presented in both direct and indirect delegation practices is not evident in the literature. IMPLICATIONS FOR THE PROFESSION: Decisions related to delegation are often made at the service level and prescribed to those who work within the service, suggesting that models of indirect delegation are in fact not delegation at all, rather a re-distribution of nurses' work. RELEVANCE TO CLINICAL PRACTICE: Delegation is a vital component of the scope of practice of registered nurses. This review has highlighted unique differences in delegation by practice context, where the proliferation of unlicensed workers in certain contexts places a vastly different professional and legal burden on the registered nurse.


Subject(s)
Nurses , Personnel Delegation , Humans
16.
Psychiatry Clin Neurosci ; 77(8): 449-456, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37165609

ABSTRACT

BACKGROUND: Parental history of dementia appears to increase the risk of dementia, but there have been inconsistent results. We aimed to investigate whether the association between parental history of dementia and the risk of dementia are different by dementia subtypes and sex of parent and offspring. METHODS: For this cross-sectional study, we harmonized and pooled data for 17,194 older adults from nine population-based cohorts of eight countries. These studies conducted face-to-face diagnostic interviews, physical and neurological examinations, and neuropsychological assessments to diagnose dementia. We investigated the associations of maternal and paternal history of dementia with the risk of dementia and its subtypes in offspring. RESULTS: The mean age of the participants was 72.8 ± 7.9 years and 59.2% were female. Parental history of dementia was associated with higher risk of dementia (odds ratio [OR] = 1.47, 95% confidence interval [CI] = 1.15-1.86) and Alzheimer's disease (AD) (OR = 1.72, 95% CI = 1.31-2.26), but not with the risk of non-AD. This was largely driven by maternal history of dementia, which was associated with the risk of dementia (OR = 1.51, 95% CI = 1.15-1.97) and AD (OR = 1.80, 95% CI = 1.33-2.43) whereas paternal history of dementia was not. These results remained significant when males and females were analyzed separately (OR = 2.14, 95% CI = 1.28-3.55 in males; OR = 1.68, 95% CI = 1.16-2.44 for females). CONCLUSIONS: Maternal history of dementia was associated with the risk of dementia and AD in both males and females. Maternal history of dementia may be a useful marker for identifying individuals at higher risk of AD and stratifying the risk for AD in clinical trials.


Subject(s)
Alzheimer Disease , Male , Humans , Female , Aged , Middle Aged , Aged, 80 and over , Cross-Sectional Studies , Alzheimer Disease/drug therapy , Parents
17.
ANS Adv Nurs Sci ; 2023 Apr 20.
Article in English | MEDLINE | ID: mdl-37185206

ABSTRACT

There is little nursing research about process issues in conducting inclusive project advisory groups of people with autism and/or intellectual disability or those who are parents/carers of this cohort. Through a descriptive qualitative design, this article aims to analyze the processes, challenges, and solutions when facilitating these groups for a nursing project in Australia. Reflexive thematic analysis was utilized to analyze field notes and meeting minutes. Results highlight the need for a defined, robust communication process between researchers and advisory groups, skilled facilitators, and careful planning of when in the life of the project the groups can contribute meaningfully. This project offers a proposed framework for the valuable contribution of lived experiences from research advisory groups.

18.
Alzheimers Dement ; 19(11): 5138-5150, 2023 11.
Article in English | MEDLINE | ID: mdl-37126409

ABSTRACT

INTRODUCTION: People living with dementia experience poor mental health and high rates of self-harm. We investigated risk factors for self-harm in people aged > 40 years living with dementia and risk factors for dementia after self-harm. METHODS: Using linked hospital data from New South Wales, Australia, we defined a dementia cohort (n = 154,811) and a self-harm cohort (n = 28,972). Using survival analyses, we investigated predictors of self-harm for the dementia cohort, and predictors of dementia for the self-harm cohort. RESULTS: We found self-harm or dementia diagnoses occurred most often within 24 months of a dementia diagnosis or initial self-harm presentation, respectively. Men living with dementia, and people with complex psychiatric profiles, had the greatest risk of self-harm. Men who had self-harmed had the greatest risk of dementia diagnoses. DISCUSSION: Men and people with complex psychiatric profiles and dementia may particularly benefit from post-diagnosis mental and behavioral support to reduce risk of self-harm.


Subject(s)
Dementia , Self-Injurious Behavior , Male , Humans , Self-Injurious Behavior/epidemiology , Self-Injurious Behavior/etiology , Risk Factors , Australia , Dementia/epidemiology
19.
J Intellect Disabil ; : 17446295231174282, 2023 May 22.
Article in English | MEDLINE | ID: mdl-37217215

ABSTRACT

People with intellectual disability and/or autism are likely to be in hospital more often, for longer, and have poorer health outcomes. Few audit tools exist to identify their barriers in mainstream healthcare environments. This study aimed to identify evidence of audit characteristics of healthcare contexts specifically for people with intellectual disability and/or autism, for conceptual development of an auditing framework. A scoping review of evaluations of healthcare environments was completed in January 2023. Findings were presented using the PAGER framework. Of the sixteen studies identified, most originated in the UK, nine focused on intellectual disability, four on autism, and three were concerned with mixed diagnosis. Six domains for auditing healthcare environments were identified: care imperatives, communication to individuals, understanding communication from individuals, providing supportive environments of care, supporting positive behaviour, and actions to make things go well. Further research is recommended to refine an audit framework.

20.
J Autism Dev Disord ; 2023 Apr 05.
Article in English | MEDLINE | ID: mdl-37017862

ABSTRACT

The stress literature suggests that coping strategies are implicated in mental health outcomes. However, the longitudinal relationship between coping strategies and mental health in the autistic adult population has not yet been examined. This 2-year longitudinal study examined the predictive role of both baseline and change in coping strategy use over time (i.e., an increase or decrease) on anxiety, depression, and well-being after 2-years in 87 autistic adults aged 16 to 80 years. Controlling for baseline mental health, both baseline and increase in disengagement coping strategies (e.g., denial, self-blame) predicted higher anxiety and depression, and lower well-being, while an increase in engagement coping strategies (e.g., problem solving, acceptance) predicted higher well-being. These findings extend the current coping literature in autistic adults, offering insight into mental health support and intervention options.

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