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1.
J Appl Res Intellect Disabil ; 35(1): 3-23, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34337837

ABSTRACT

BACKGROUND: People with intellectual disabilities have a high risk of developing mental ill-health. Treatment is often neglected and diagnosis is misattributed to a person's disability. Standard psychosocial interventions can improve a person's well-being. This review aimed to understand what interventions are being delivered, any benefits, and future recommendations. METHODS: Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines were followed, and the review registered with PROSPERO-CRD42020160254. Databases searched included: MEDLINE, Embase, and PsycINFO. A framework synthesis approach was used to present the findings. RESULTS: There are limited psychosocial interventions offered for this population. When groups are delivered having a creative element, multiple activities over a short period of time, with breaks and group rules outcomes can be improved. CONCLUSIONS: Adaptations and reasonable adjustments should be used specifically to a person's ability. A mixed-method design allows people to share their experiences alongside quantitative data that provides clinical information.


Subject(s)
Disabled Persons , Intellectual Disability , Humans , Intellectual Disability/therapy , Mental Health , Psychosocial Intervention
2.
J R Army Med Corps ; 163(4): 242-250, 2017 Aug.
Article in English | MEDLINE | ID: mdl-28320916

ABSTRACT

BACKGROUND: Higher levels of alcohol consumption have been observed in the UK armed forces compared with the general population. For some, this may increase the risk of using alcohol as a coping strategy when adjusting to multiple life events occurring when moving back into civilian life. METHOD: A systematic review was conducted to determine the effectiveness of alcohol brief interventions for military personnel during transition. Electronic databases including Medline, Central, Healthcare Management Information Consortium (HMIC) and Embase, and grey literature, were searched. Two reviewers independently assessed potential studies for inclusion, extracted data and assessed quality of selected articles using an established instrument. RESULTS: Ten studies met criteria for inclusion. Studies were synthesised narratively. Interventions were heterogeneous, and bias within studies may have acted to increase or decrease their reported effectiveness. The findings suggest some evidence for effectiveness of self-administered web-based interventions, involving personalised feedback over a number of sessions, and system-level electronic clinical reminders. All studies were from the USA. Delivery of interventions by a clinician during motivational interviews was most effective for those with post-traumatic stress disorder symptoms. CONCLUSIONS: A UK trial of web-based interventions with personalised feedback is recommended.


Subject(s)
Alcoholism/prevention & control , Military Personnel/psychology , Risk Assessment , Adaptation, Psychological , Alcoholism/diagnosis , Counseling , Depression/psychology , Humans , Stress Disorders, Post-Traumatic/psychology
3.
BMJ Paediatr Open ; 8(1)2024 Jun 18.
Article in English | MEDLINE | ID: mdl-38897620

ABSTRACT

BACKGROUND: The UK National Health Service (NHS) Long Term Plan aims to reduce waiting times for childhood autism diagnostic assessment and improve parent and child satisfaction. This empirical research investigated current childhood diagnostic practice provision, and changes made by teams to address challenges faced. METHODS: Data were collected using an online semi-structured research questionnaire. UK childhood autism diagnostic assessment services (for children aged 1-18 years) were invited to participate through multidisciplinary clinical networks, special interest groups and professionals mailing lists. The study was on the National Institute for Health Research Clinical Research Network portfolio. RESULTS: 128 clinicians from diverse NHS services responded including: 10 (8%) integrated services, 46 (36%) Child and Adolescent Mental Health Services (CAMHS) and 72 (56%) paediatric services. A minority of services (23, 17.9%) reported always meeting the National Institute for Health and Care Excellence guidance for assessment. Referrals rose 115% between 2015 and 2019. Clinicians described increased child and family complexity compared with previously; children had more co-occurring physical, mental health and neurodevelopmental conditions and there were more frequent family health problems and safeguarding concerns. Most services (97, 75.8%) reported recent funding stayed constant/decreased. Incomplete multidisciplinary teams (MDTs) were frequently reported; a minority of services reported increased availability of professionals, and some experienced reductions in key professionals. Many teams were unable to undertake assessments or make recommendations for associated neurodevelopmental and co-existing conditions. Teams described improvement strategies implemented (eg, adapting professionals' roles, supporting parents). CONCLUSIONS: Most UK autism paediatric and CAMHS diagnostic teams experience significant challenges affecting the assessment of children with possible autism, and recommendations regarding treatment/intervention. Where CAMHS or paediatric services work in isolation, there are often competency gaps in MDTs and ability to deliver full neurodevelopmental and mental health assessments. Teams identified service improvement strategies; however, investment in MDT expertise is required to enable services to implement changes to meet the needs of children and families.


Subject(s)
Autistic Disorder , Humans , United Kingdom/epidemiology , Child , Child, Preschool , Adolescent , Autistic Disorder/diagnosis , Autistic Disorder/therapy , Autistic Disorder/epidemiology , Infant , Male , Female , Surveys and Questionnaires , Child Health Services , State Medicine , Referral and Consultation , Health Care Surveys
4.
Autism ; 27(2): 344-355, 2023 02.
Article in English | MEDLINE | ID: mdl-35670069

ABSTRACT

LAY ABSTRACT: Research has identified types of support helpful to autistic people, for example, physical and mental health interventions, psycho-education, peer support, developing positive identities and affiliation with social groups. However, accessing suitable post-autism diagnosis support and services is extremely difficult. We asked autistic adults, relatives and clinicians about their experiences of receiving and delivering post-autism diagnosis support/services. In Stage 1, 343 autistic adults and 45 relatives completed a survey. They answered questions about their experiences of UK autism post-diagnosis support/services for adults within 12 months after receiving a diagnosis. Thirty-five clinicians completed a similar survey. Just over half of adults and relatives said there was a follow-up appointment or discussion about support after diagnosis. Fewer than 40% received any support/services in 12 months after diagnosis. We used information from the surveys to create 11 statements describing characteristics of appropriate adult post-autism diagnosis support/services. In Stage 2, we asked clinicians for their views on the statements - they agreed with all of them. For example, those adults are offered an additional follow-up meeting after diagnosis and have access to mental and physical health services. We shared results with autistic adults, relatives and clinicians at two events. Some autistic adults, relatives and clinicians were positive about post-autism diagnosis support/services. However, they described many areas for improvement. The study findings can be used to define, develop and improve the types of adult post-diagnosis support services.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Humans , Adult , Autistic Disorder/diagnosis , Autism Spectrum Disorder/diagnosis , Consensus , Mental Health , United Kingdom
5.
BMJ Open ; 12(12): e065945, 2022 12 23.
Article in English | MEDLINE | ID: mdl-36564116

ABSTRACT

OBJECTIVES: To investigate key stakeholders' views on how to improve access to primary care in general practice settings for people with learning disabilities (or intellectual disabilities). Further to explore how inequalities and barriers in specific areas including annual health checks might be addressed. DESIGN: A qualitative study design was used with data collected during focus groups, interviews and open-response surveys; data analysis was thematic and informed by stakeholder consultation. Processes to facilitate quality included triangulation of stakeholder perspectives, triangulation of data collection methods and checking interpretation of findings with participants. SETTING: UK regional services including learning disability organisations, primary care general practitioner (GP) clinical practice networks and supported housing organisations. PARTICIPANTS: Sixteen people participated in the study: four people with learning disabilities participated in a focus group; four relatives completed an interview or survey; eight GPs, practice nurses and supported housing managers participated in interviews. RESULTS: Five overarching themes describing approaches to improve primary care access for people with learning disabilities were identified including: prioritisation, proactivity, innovation and improvement, personalisation and prevention and follow-up. Definitions of themes were described and illustrated with quotes. Ten recommendations informed by the thematic analysis, stakeholder consultation, research and primary care guidance were codeveloped with people with learning disabilities. CONCLUSIONS: All stakeholders identified problems, with primary care interfaces being misaligned with the needs of people with learning disabilities. The recommendations informed by all stakeholders can be used to guide development of service provision to better meet the needs of people with learning disabilities in primary care. Future research should explore professionals' understanding of reasonable adjustments.


Subject(s)
Intellectual Disability , Learning Disabilities , Humans , Access to Primary Care , Qualitative Research , Focus Groups
6.
Autism ; 26(8): 1959-1972, 2022 11.
Article in English | MEDLINE | ID: mdl-35168407

ABSTRACT

LAY ABSTRACT: Living with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people's experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Humans , Autistic Disorder/diagnosis , Autistic Disorder/psychology , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/psychology , Surveys and Questionnaires , United Kingdom
7.
Res Dev Disabil ; 112: 103914, 2021 May.
Article in English | MEDLINE | ID: mdl-33631599

ABSTRACT

BACKGROUND: Research suggests exposure to adverse life events is elevated in people with intellectual disabilities. We developed the Lancaster and Northgate Trauma Scales (LANTS) to address the limited availability of screening questionnaires for people with intellectual disabilities affected by adverse traumatic experiences. AIMS: The aims of this study were to (i) evaluate the factor structure of the self-report LANTS and (ii) assess compatibility with the International Classification of Diseases Eleventh Revision (ICD-11) criteria for complex PTSD. METHODS AND PROCEDURE: Ninety-eight people with mild to moderate intellectual disability (86 % men; mean age 41 years) completed the self-report LANTS. Exploratory factor analysis was undertaken using a polychoric correlation matrix, appropriate for the LANTS ordinal response options. OUTCOMES AND RESULTS: Seven items including self-harm and anger were non-normal in distribution and excluded from the analysis; a four-factor structure was identified for the 22 remaining items. We make suggestions for correspondence of LANTS items to ICD-11 criteria for complex PTSD. CONCLUSIONS AND IMPLICATIONS: This is the first exploratory factor analysis of the LANTS. Items pertaining to anger and self-harm may be prone to response bias and development of these items using qualitative methods would be useful. The findings require replication with a larger group of people with intellectual disabilities, including more women.


Subject(s)
Intellectual Disability , International Classification of Diseases , Adult , Anger , Factor Analysis, Statistical , Female , Humans , Intellectual Disability/diagnosis , Male , Self Report
8.
Res Dev Disabil ; 117: 104039, 2021 Oct.
Article in English | MEDLINE | ID: mdl-34314952

ABSTRACT

INTRODUCTION: Research suggests some trauma symptoms e.g. avoidance are difficult to recognise in autistic people with intellectual disability while arousal/emotional and interpersonal difficulties may be useful signals. This review aims to (i) identify questionnaires used in general population complex trauma interventions to measure emotional and interpersonal difficulty and (ii) evaluate their psychometric properties to inform selection of a potential measure/s for use and/or adaptation for autistic people with mild intellectual disability and trauma related mental health conditions. METHODS: Stage 1: we searched Medline, Cinahl, Embase and PsycInfo for general population and clinical complex trauma intervention studies. Stage 2: we used a search filter in Embase to identify psychometric evaluations of relevant questionnaires used in Stage 1 studies and assessed these with the COnsensus based Standards for the selection of health based Measurement Instruments (COSMIN) checklist. RESULTS: five studies were identified in Stage 1 utilising three measures of emotion dysregulation and interpersonal difficulties. Thirty-three articles on their psychometric properties were identified in Stage 2. Strongest psychometric evidence was found for the Emotion Regulation Questionnaire (ERQ) and Difficulties in Emotion Regulation Scale (DERS). CONCLUSIONS: Evaluating content validity/acceptability of the ERQ and DERS for autistic people with mild intellectual disability and trauma-related mental health conditions are useful next steps.


Subject(s)
Autistic Disorder , Intellectual Disability , Adult , Checklist , Humans , Intellectual Disability/diagnosis , Psychometrics , Surveys and Questionnaires
9.
Front Psychol ; 11: 1771, 2020.
Article in English | MEDLINE | ID: mdl-33101097

ABSTRACT

Background: Children with physical health long-term conditions (LTCs) have increased risk of mental health difficulties relative to healthy peers. However, availability of psychological support integrated into pediatric physical health settings is limited, and there are long waiting times for access to child mental health services. Arts-based therapies involve using creative media to develop a therapeutic relationship, and offer a potential alternative to talking-based therapies. The aim of this systematic review is to establish the effectiveness of arts-based therapies for improving the mental health of children with physical health LTCs. Methods: The review protocol was published on PROSPERO. Four electronic databases were searched (Medline, Embase, Cinahl, and PsycINFO), plus hand searches of two key journals and relevant reviews, and forward/back citations searches of selected articles were conducted. The Effective Public Health Practice Project (EPHPP) Quality Assessment Tool was used to assess bias in selected articles. Second reviewers completed 10% of article screening and 20% of bias assessments. The findings were synthesized narratively. Results: Sixteen studies met inclusion criteria and demonstrated some improvements on indicators of mental health and well-being including quality of life, coping behaviors, anxiety, self-concept, and mood. However, replication across interventions and outcomes was absent. Overall, the quality of evidence of effectiveness in the studies reviewed was moderate/weak. This was due to bias in study design; other limitations included a lack of detail on intervention components, e.g., use of a manual, and single recruitment sites. Conclusions: The heterogeneity of existing research evaluating arts-based therapies for children with physical health LTCs limits conclusions about effectiveness. Suggestions are made to inform the design of future research studies to help build a robust evidence base.

10.
Autism Adulthood ; 2(1): 42-47, 2020 Mar 01.
Article in English | MEDLINE | ID: mdl-36600980

ABSTRACT

Background: Clinicians use diagnostic interviews to help them gather and organize information collected in the assessment of autism. Most instruments are developed for children and few measures have been developed that are reliable, valid, and appropriate for use in adulthood. This is a significant barrier to providing a high-quality, timely service for adults. The aim of this development study was to assess the initial utility of the recently developed Autism Clinical Interview for Adults (ACIA) for use in autism diagnostic clinical services before further large-scale testing and evaluation. Methods: We invited adults who had received an autism spectrum diagnosis through a U.K. National Health Service (NHS) multidisciplinary adult autism assessment to participate. Seventeen autistic adults (8 women and 9 men, mean age of 37 years) and four relatives agreed to an interview. The semistructured ACIA interview comprises subject and informant versions, and a self-report preinterview questionnaire. In combination, the ACIA components cover topics relevant to autism and co-occurring condition assessment. We evaluated clinical utility and content validity via comparison with the Diagnostic and Statistical Manual Fifth Edition (DSM-5) and NHS diagnostic reports. Results: Each interview took between 60 and 90 minutes to complete. Comparison with DSM-5 and the NHS autism diagnostic report demonstrated that the ACIA accurately identified information on core autism characteristics needed for a diagnosis, and identified co-occurring conditions. In response to participant suggestions we revised the interview. Conclusions: These initial findings support the potential utility and validity of the ACIA for adult autism diagnostic clinical services. Further investigations of the acceptability, utility, and validity of this interview are planned. Lay summary: Why was this study done?: Clinicians use diagnostic interviews during assessments to help gather and record information both from a person suspected to be on the autism spectrum and from an informant (someone who knows them well). However, most autism diagnostic interviews were originally developed for assessing autism in childhood, and few have been developed for use with adults. The lack of diagnostic interviews developed specifically for use with adults makes it difficult to provide a good-quality, consistent assessment.What was the purpose of this study?: The study tested a new semistructured diagnostic interview called the Autism Clinical Interview for Adults (ACIA). The ACIA includes a questionnaire for people to complete before their interview. This is followed by an interview that can be conducted with the person themselves and a separate version to be used with someone who knows them well (if permitted). The interview covers autism traits, strengths and difficulties, and co-occurring physical and mental health conditions. We wanted to find out if the interview is useful for autism diagnostic services by comparing information collected using the ACIA with clinical diagnostic reports.What did the researchers do?: We invited people who had received a diagnosis of autism from a U.K. National Health Service (NHS) assessment to take part in an interview. We asked them if we could also interview someone who knew them well, and if we could compare their NHS autism diagnostic report with information gathered using the ACIA.What were the results of the study?: Seventeen autistic adults (average age 37 years; 8 women and 9 men) and 4 relatives/supporters (2 parents, a spouse, and a cohabiting partner) agreed to be interviewed. Each interview took 60 to 90 minutes to complete. A comparison with clinical reports showed the ACIA identified autism traits relevant for a diagnosis, as well as co-occurring conditions (e.g., depression). Participants suggested some ways to improve the interview, and revisions were made.What do these findings add to what is already known?: There are few diagnostic interviews designed specifically for use with adults seeking a diagnosis of autism. The findings from this study show that the ACIA is a promising new interview.What are the potential weaknesses of the study?: The study is small. However, it is important to run an initial test study before involving more people and resources in larger studies. Building on these results, we aim to undertake further studies on the acceptability and usefulness of the new interview with a larger number of people, including people from a range of backgrounds.How will these findings help autistic people now or in the future?: The ACIA has potential for use in adult autism clinical assessment services and as a resource for research and training. The semistructured format helps gather important and relevant information, and the interview length supports feasibility in clinical and research settings. The ACIA has the potential to streamline autism assessments and speed up the process for adults who currently wait a long time for their diagnosis.

11.
Autism Adulthood ; 2(1): 24-33, 2020 Mar 01.
Article in English | MEDLINE | ID: mdl-36600985

ABSTRACT

Background: Anxiety is highly prevalent in autistic adults and can cause a significant impact on functioning and quality of life. There are no existing measures of anxiety designed and validated specifically for autistic adults. In this study, we aimed to adapt an existing anxiety measure designed for autistic children, in collaboration with autistic adults and other professionals, to make it suitable for use for autistic adults and to examine the measurement properties of the newly designed measure. Methods: Through consultation with autistic adults and professionals working with autistic people, we developed a preliminary self-report anxiety measure. Five hundred fifty-one autistic adults completed the measure and another measure of anxiety and depression (the Hospital Anxiety and Depression Scale). Participants completed measures again after 1 month to determine test/retest reliability. We split the sample to enable exploratory and confirmatory factor analyses to be undertaken on different samples. We conducted internal consistency and convergent and divergent validity analyses. We completed receiver operator curve (ROC) analyses to investigate sensitivity and specificity and identify an indicative clinical cutoff. Results: Our findings indicate that the Anxiety Scale for Autism-Adults (ASA-A) has promising psychometric properties. Factor analysis indicated that a bifactor solution with orthogonal general and specific factors was an adequate fit and that minimal measurement bias would occur if the scale were treated as unidimensional, so the total score could be used as a valid measure of anxiety. We identified a General Anxiety factor and three group factors (Social Anxiety, Uncertainty, and Anxious Arousal). ROC analysis indicated a score of 28 could be considered an indicative clinical cutoff. Conclusion: The ASA-A is the first self-report anxiety questionnaire specifically developed and validated for autistic adults. Preliminary evaluation of the measurement properties indicates that the scale will be a useful tool in research and clinical contexts. Lay summary: Why was this study done?: Autistic adults commonly experience anxiety, which can have a huge impact on their quality of life. One way of identifying anxiety is by using questionnaires. Research shows that anxiety may be experienced differently by autistic people, and so, questionnaires that have been created for neurotypical adults may not be suitable for autistic adults. At present, there are no anxiety measures that have been adapted specifically for autistic adults.What was the purpose of this study?: Our team previously created an anxiety questionnaire for autistic children-the Anxiety Scale for Children-Autism Spectrum Disorder (ASC-ASD). We aimed to adapt this questionnaire to make it suitable for autistic adults.What did the researchers do?: We met with autistic people and professionals, and asked them how to change the ASC-ASD to make it suitable for measuring anxiety in autistic adults. We discussed whether the questions were appropriate for adults, if the questions were worded clearly, and if anything was missing. We then created the Anxiety Scale for Autism-Adults (ASA-A).What did we find?: Once the questionnaire was created, 551 autistic adults with anxiety completed it. We used this information to test whether the questionnaire was a good way of measuring anxiety. We also tested the questionnaire subscales, which were as follows: Anxious Arousal, Social Anxiety, and Uncertainty. We found that the questionnaire is useful in giving a total score for anxiety, and we found that a score of 28 indicated anxiety that was likely to have an impact on someone's daily life. Each subscale was also found to be useful for providing a "profile" of anxiety.What do these findings add to what was already known?: These findings suggest that the ASA-A is a good way of measuring anxiety in autistic adults. This is the first anxiety measure to be developed for autistic adults. This study is the first step toward testing out the usefulness of the measure. We hope that our questionnaire can be further tested and that in the future it will help to identify anxiety experienced by autistic adults more accurately. This would mean that the results of future studies are more likely to be valid, which should help improve what we know about the anxiety autistic people experience.What are potential weaknesses in the study?: We used another anxiety measure to measure anxiety levels when testing what the cutoff score should be on our measure. A clinical interview may have been a more accurate way, and should be done in the future to check that the cutoff of 28 on the ASA-A is still appropriate for identifying anxiety in autistic adults.We recruited autistic adults from a database of people who are interested in taking part in research. This helped us to get enough people to test the questionnaire, but we cannot tell how well these results apply to all autistic people. Testing the questionnaire with other autistic people, including those who may need some assistance with reading or who may need someone else to complete it on their behalf will let us know.How will these findings help autistic adults now or in the future?: The final questionnaire, the ASA-A, has been shown to accurately measure anxiety in autistic adults who do not have an intellectual disability. The questionnaire will be helpful in both clinical and research services.

12.
Autism ; 23(2): 287-305, 2019 02.
Article in English | MEDLINE | ID: mdl-29439585

ABSTRACT

Accurately diagnosing autism spectrum disorders in adulthood can be challenging. Structured questionnaires and diagnostic measures are frequently used to assist case recognition and diagnosis. This study reviewed research evidence on structured questionnaires and diagnostic measures published since the National Institute for Health and Care Excellence evidence update. The Cochrane library, Medline, Embase and PsycINFO were searched. In all, 20 studies met inclusion criteria. Sensitivity and specificity of structured questionnaires were best for individuals with previously confirmed autism spectrum disorder diagnoses and reduced in participants referred for diagnostic assessments, with discrimination of autism spectrum disorder from mental health conditions especially limited. For adults with intellectual disability, diagnostic accuracy increased when a combination of structured questionnaires were used. Evidence suggests some utility of diagnostic measures in identifying autism spectrum disorder among clinic referrals, although specificity for diagnosis was relatively low. In mental health settings, the use of a single structured questionnaire is unlikely to accurately identify adults without autism spectrum disorder or differentiate autism spectrum disorder from mental health conditions. This is important as adults seeking an autism spectrum disorder diagnostic assessment are likely to have co-existing mental health conditions. Robust autism spectrum disorder assessment tools specifically for use in adult diagnostic health services in the presence of co-occurring mental health and neurodevelopmental disorders are a research priority.


Subject(s)
Autism Spectrum Disorder/diagnosis , Adult , Autism Spectrum Disorder/epidemiology , Comorbidity , Diagnosis, Differential , Humans , Mental Disorders/diagnosis , Mental Disorders/epidemiology , Psychometrics , Sensitivity and Specificity , Surveys and Questionnaires
13.
PLoS One ; 13(5): e0190144, 2018.
Article in English | MEDLINE | ID: mdl-29718969

ABSTRACT

Exposure to stressful and potentially traumatic experiences is a risk for military personnel and for some this may increase susceptibility to reduced well-being. The aim of this systematic review was to examine the effectiveness of interventions to promote the well-being of military personnel adjusting to civilian life. Electronic databases were searched including MEDLINE, Embase, HMIC, PsycINFO, Pilots and CINAHL. Twelve articles, all conducted in the USA, were included in the review. Articles were synthesised narratively and assessed for bias against established criteria. The studies evaluated the effectiveness of interventions for current and former military personnel. The interventions included expressive writing, anger management, cognitive training, psycho-education, and techniques to promote relaxation, connection in relationships and resilience. Interventions had some significant positive effects mostly for veterans adjusting to civilian life and other family members. There was much heterogeneity in the design and the outcome measures used in the studies reviewed. The review highlights the need for future robust trials examining the effectiveness of well-being interventions in military groups with diverse characteristics; in addition qualitative research to explore a conceptualisation of well-being for this group and the acceptability of interventions which may be perceived as treatment. The results of the review will be of interest to a number of stakeholders in military, public health and mental health settings. PROSPERO Registration number: CRD42015026341.


Subject(s)
Adaptation, Psychological , Mental Health , Military Personnel/psychology , Humans
14.
Autism Res ; 9(11): 1205-1215, 2016 11.
Article in English | MEDLINE | ID: mdl-26887910

ABSTRACT

Many children with autism spectrum disorder (ASD) experience high levels of anxiety. A widely used measure for typically developing children is the Revised Child Anxiety and Depression Scale (RCADS). However, such anxiety measures may require adaptation to accommodate characteristics of those with ASD. An adapted version of the RCADS was created based on empirical evidence of anxiety phenomenology in ASD, which included additional items related to sensory anxiety, intolerance of uncertainty, and phobias. Content validity was refined during focus groups with parents. Polychoric factor analysis was undertaken on data from 170 children with ASD, aged 8-16, and their parents. This process resulted in the creation of a new 24 item scale (self and parent report) each with four subscales: Performance Anxiety, Uncertainty, Anxious Arousal, and Separation Anxiety, with evidence of good reliability and validity. The freely available Anxiety Scale for Children - ASD, Parent and Child versions (ASC-ASD) has promising psychometric properties including good internal consistency, validity, and 1 month test-retest reliability. Autism Res 2016, 9: 1205-1215. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.


Subject(s)
Anxiety Disorders/complications , Anxiety Disorders/diagnosis , Autism Spectrum Disorder/complications , Child , Female , Humans , Male , Psychometrics/methods , Reproducibility of Results , United Kingdom
15.
PLoS One ; 11(6): e0156843, 2016.
Article in English | MEDLINE | ID: mdl-27253196

ABSTRACT

BACKGROUND: Childhood vaccinations are a core component of public health programmes globally. Recent measles outbreaks in the UK and USA have prompted debates about new ways to increase uptake of childhood vaccinations. Parental financial incentives and quasi-mandatory interventions (e.g. restricting entry to educational settings to fully vaccinated children) have been successfully used to increase uptake of childhood vaccinations in developing countries, but there is limited evidence of effectiveness in developed countries. Even if confirmed to be effective, widespread implementation of these interventions is dependent on acceptability to parents, professionals and other stakeholders. METHODS: We conducted a systematic review (n = 11 studies included), a qualitative study with parents (n = 91) and relevant professionals (n = 24), and an on-line survey with embedded discrete choice experiment with parents (n = 521) exploring acceptability of parental financial incentives and quasi-mandatory interventions for preschool vaccinations. Here we use Triangulation Protocol to synthesise findings from the three studies. RESULTS: There was a consistent recognition that incentives and quasi-mandatory interventions could be effective, particularly in more disadvantaged groups. Universal incentives were consistently preferred to targeted ones, but relative preferences for quasi-mandatory interventions and universal incentives varied between studies. The qualitative work revealed a consistent belief that financial incentives were not considered an appropriate motivation for vaccinating children. The costs of financial incentive interventions appeared particularly salient and there were consistent concerns in the qualitative work that incentives did not represent the best use of resources for promoting preschool vaccinations. Various suggestions for improving delivery of the current UK vaccination programme as an alternative to incentives and quasi-mandates were made. CONCLUSIONS: Parental financial incentives and quasi-mandatory interventions for increasing uptake of preschool vaccinations do not currently attract widespread enthusiastic support in the UK; but some potential benefits of these approaches are recognised.


Subject(s)
Motivation , Parents , Vaccination/economics , Child , Child, Preschool , Cost-Benefit Analysis , Humans , Research Design , Sample Size
16.
J Autism Dev Disord ; 45(4): 943-52, 2015 Apr.
Article in English | MEDLINE | ID: mdl-25261248

ABSTRACT

Sensory processing abnormalities, anxiety and restricted and repetitive behaviours (RRBs) frequently co-occur in autism spectrum disorders (ASD). Though the relationship between these phenomena is not well understood, emerging evidence indicates intolerance of uncertainty (IU) may play an important role. This study aimed to determine pathways between sensory abnormalities and RRBs, and the role anxiety and IU may have. We gathered caregiver report data for 53 children with ASD aged 8-16 years. We found sensory under responsiveness and sensory over responsiveness were significantly associated with repetitive motor and insistence on sameness behaviours, and the relationships significantly mediated by IU and anxiety. Our findings indicate different mechanisms may underpin repetitive motor and insistence on sameness RRBs, which can inform treatment interventions.


Subject(s)
Anxiety/diagnosis , Child Development Disorders, Pervasive/diagnosis , Sensation Disorders/diagnosis , Stereotyped Behavior , Uncertainty , Adolescent , Anxiety/psychology , Caregivers/psychology , Child , Child Development Disorders, Pervasive/psychology , Cognition/physiology , Female , Humans , Male , Sensation/physiology , Sensation Disorders/psychology , Stereotyped Behavior/physiology
17.
Health Technol Assess ; 19(94): 1-176, 2015 Nov.
Article in English | MEDLINE | ID: mdl-26562004

ABSTRACT

BACKGROUND: Uptake of preschool vaccinations is less than optimal. Financial incentives and quasi-mandatory policies (restricting access to child care or educational settings to fully vaccinated children) have been used to increase uptake internationally, but not in the UK. OBJECTIVE: To provide evidence on the effectiveness, acceptability and economic costs and consequences of parental financial incentives and quasi-mandatory schemes for increasing the uptake of preschool vaccinations. DESIGN: Systematic review, qualitative study and discrete choice experiment (DCE) with questionnaire. SETTING: Community, health and education settings in England. PARTICIPANTS: Qualitative study - parents and carers of preschool children, health and educational professionals. DCE - parents and carers of preschool children identified as 'at high risk' and 'not at high risk' of incompletely vaccinating their children. DATA SOURCES: Qualitative study - focus groups and individual interviews. DCE - online questionnaire. REVIEW METHODS: The review included studies exploring the effectiveness, acceptability or economic costs and consequences of interventions that offered contingent rewards or penalties with real material value for preschool vaccinations, or quasi-mandatory schemes that restricted access to 'universal' services, compared with usual care or no intervention. Electronic database, reference and citation searches were conducted. RESULTS: Systematic review - there was insufficient evidence to conclude that the interventions considered are effective. There was some evidence that the quasi-mandatory interventions were acceptable. There was insufficient evidence to draw conclusions on economic costs and consequences. Qualitative study - there was little appetite for parental financial incentives. Quasi-mandatory schemes were more acceptable. Optimising current services was consistently preferred to the interventions proposed. DCE and questionnaire - universal parental financial incentives were preferred to quasi-mandatory interventions, which were preferred to targeted incentives. Those reporting that they would need an incentive to vaccinate their children completely required around £110. Those who did not felt that the maximum acceptable incentive was around £70. LIMITATIONS: Systematic review - a number of relevant studies were excluded as they did not meet the study design inclusion criteria. Qualitative study - few partially and non-vaccinating parents were recruited. DCE and questionnaire - data were from a convenience sample. CONCLUSIONS: There is little current evidence on the effectiveness or economic costs and consequences of parental financial incentives and quasi-mandatory interventions for preschool vaccinations. Universal incentives are likely to be more acceptable than targeted ones. Preferences concerning incentives versus quasi-mandatory interventions may depend on the context in which these are elicited. FUTURE WORK: Further evidence is required on (i) the effectiveness and optimal configuration of parental financial incentive and quasi-mandatory interventions for preschool vaccinations - if effectiveness is confirmed, further evidence is required on how to communicate this to stakeholders and the impact on acceptability; and (ii) the acceptability of parental financial incentive and quasi-mandatory interventions for preschool vaccinations to members of the population who are not parents of preschool children or relevant health professionals. Further consideration should be given to (i) incorporating reasons for non-vaccination into new interventions for promoting vaccination uptake; and (ii) how existing services can be optimised. STUDY REGISTRATION: This study is registered as PROSPERO CRD42012003192. FUNDING: The National Institute for Health Research Health Technology Assessment programme.


Subject(s)
Motivation , Parents , Patient Acceptance of Health Care , Reward , Vaccination/economics , Adult , Child, Preschool , Humans , Qualitative Research , Surveys and Questionnaires , United Kingdom , Vaccination/statistics & numerical data
18.
PLoS One ; 9(1): e85268, 2014.
Article in English | MEDLINE | ID: mdl-24465519

ABSTRACT

BACKGROUND: Evidence about relevant outcomes is required in the evaluation of clinical interventions for children with autism spectrum disorders (ASD). However, to date, the variety of outcome measurement tools being used, and lack of knowledge about the measurement properties of some, compromise conclusions regarding the most effective interventions. OBJECTIVES: This two-stage systematic review aimed to identify the tools used in studies evaluating interventions for anxiety for high-functioning children with ASD in middle childhood, and then to evaluate the tools for their appropriateness and measurement properties. METHODS: Electronic databases including Medline, PsychInfo, Embase, and the Cochrane database and registers were searched for anxiety intervention studies for children with ASD in middle childhood. Articles examining the measurement properties of the tools used were then searched for using a methodological filter in PubMed, and the quality of the papers evaluated using the COSMIN checklist. RESULTS: Ten intervention studies were identified in which six tools measuring anxiety and one of overall symptom change were used as primary outcomes. One further tool was included as it is recommended for standard use in UK children's mental health services. Sixty three articles on the properties of the tools were evaluated for the quality of evidence, and the quality of the measurement properties of each tool was summarised. CONCLUSIONS: Overall three questionnaires were found robust in their measurement properties, the Spence Children's Anxiety Scale, its revised version - the Revised Children's Anxiety and Depression Scale, and also the Screen for Child Anxiety Related Emotional Disorders. Crucially the articles on measurement properties provided almost no evidence on responsiveness to change, nor on the validity of use of the tools for evaluation of interventions for children with ASD. PROSPERO REGISTRATION NUMBER: CRD42012002684.


Subject(s)
Anxiety/diagnosis , Child Development Disorders, Pervasive/diagnosis , Outcome Assessment, Health Care/methods , Research Design , Anti-Anxiety Agents/therapeutic use , Anxiety/drug therapy , Anxiety/physiopathology , Child , Child Development Disorders, Pervasive/drug therapy , Child Development Disorders, Pervasive/physiopathology , Child, Preschool , Databases, Bibliographic , Female , Humans , Male , Mental Status Schedule , Surveys and Questionnaires
19.
Pediatrics ; 134(4): e1117-28, 2014 Oct.
Article in English | MEDLINE | ID: mdl-25225138

ABSTRACT

BACKGROUND AND OBJECTIVE: Financial incentives have been used to promote vaccination uptake but are not always viewed as acceptable. Quasimandatory policies, such as requiring vaccinations for school enrollment, are widely implemented in some countries. A systematic review was conducted to determine the effectiveness, acceptability, and economic costs and consequences of parental financial incentives and quasimandatory schemes for increasing the uptake of preschool vaccinations in high-income countries. METHODS: Electronic databases and gray literature were searched for randomized controlled trials, controlled before-and-after studies, and time series analyses examining the effectiveness of parental financial incentives and quasimandatory schemes, as well as any empirical studies exploring acceptability. All included studies were screened for information on economic costs and consequences. Two reviewers independently assessed studies for inclusion, extracted data, and assessed the quality of selected articles by using established instruments. Studies were synthesized in narrative reviews. RESULTS: Four studies on the effectiveness and 6 on the acceptability of parental financial incentives and quasimandatory interventions met the inclusion criteria. Only 1 study reported on costs and consequences. Studies of effectiveness had low risk of bias but displayed substantial heterogeneity in terms of interventions and methods. CONCLUSIONS: There was insufficient evidence to conclude whether these interventions were effective. Studies of acceptability suggested a preference, in settings where this already occurs, for incentives linking vaccinations to access to education. There was insufficient evidence to draw conclusions on economic costs and consequences.


Subject(s)
Motivation , Parents , Reward , Vaccination/economics , Child, Preschool , Humans , Parents/education , Randomized Controlled Trials as Topic/economics , Randomized Controlled Trials as Topic/methods , Vaccination/methods
20.
Neuropsychology ; 28(2): 222-8, 2014 Mar.
Article in English | MEDLINE | ID: mdl-24219603

ABSTRACT

OBJECTIVE: Everyday decision making requires integration of a broad range of information from a variety of sources, including cognitive and emotional processes. For individuals with autism spectrum disorder (ASD), everyday decision making can be difficult. The mechanisms that underlie decision making in young people diagnosed with ASD have not been fully explored. METHOD: We studied children and young adolescents with autism spectrum disorder (ASD; n = 48) compared with an age- and ability-matched typical control group (CON; n = 54). We evaluated performance and psycho-physiological responsivity during the Iowa Gambling Task (IGT), an affective decision-making task. RESULTS: ASD participants were superior to control participants on overall performance (p < .05), especially because of significantly better learning in later stages of the task. While both groups showed robust and equal psycho-physiological arousal to disadvantageous decks, the groups differed in their choice of card type, with the CON group choosing more often from the frequent-gain disadvantageous deck, despite occasional large losses; while the ASD group chose prominently from the advantageous decks. CONCLUSIONS: A decision-making style characterized by a drive to avoid potential loss rather than to seek possible reward may help decision making for ASD in some situations, but ultimately hinder functioning in relation to prosocial engagement and other complex situations where gain rather than punishment is the most effective motivating factor.


Subject(s)
Child Development Disorders, Pervasive/physiopathology , Child Development Disorders, Pervasive/psychology , Decision Making/physiology , Adolescent , Child , Female , Humans , Male , Risk
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