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Preliminary Findings From a Nationwide, Multicenter Mental Health Service for Adults and Older Adolescents With Autism Spectrum Disorder and ID

HELVERSCHOU, Sissel Berge
BAKKEN, Trine Lise
BERGE, Heidi
BJØRGEN, Tale Gjertine
BOTHEIM, Henrik
HELLERUD, Jane Askeland
HELSET, Ingunn
ODDBJØRN, Hove
JOHANSEN, Per Anders
KILDAHL, Arvid Nikolai
LUDVIGSEN, Linn Beate
NYGAARD, Sissel
RYSSTAD, Anne
WIGAARD, Elisabeth
HOWLIN, Patricia
2020

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Background: The identification and treatment of psychiatric disorders in individuals with autism spectrum disorders (ASD) and ID presents many challenges. We describe the development of a professional network, together with a standardized protocol for clinical assessment, designed to promote clinical competence and professional development in eight clinical centers responsible for providing mental health services to autistic individuals with ID across all four health regions of Norway. Specic aims to describe: (1) patterns of psychiatric and behavior problems in patients treated by the network, (2) patterns of change over time, and (3) the relationship between psychiatric disorders and behavior problems.


Method: A standardized protocol was used to assess individual progress in 132 patients (inpatients and outpatients) with autism and ID over 2 years (at referral (T1), after 1 year (T2), and after 2 years (T3)). Changes in psychiatric symptoms and behavior problems were assessed with the Psychopathology in Autism Checklist (PAC) and Aberrant Behavior Checklist (ABC).


Results: Patients showed signicant (p < .001) improvements from T1 to T2 on the psychosis, depression and anxiety subscales of the PAC, but no signicant improvement on the obsessive compulsive disorder (OCD) subscale. Improvements were maintained from T2 to T3. Patients showed signicant (p < .01) improvements on the ABC total score and on all ABC subscales except inappropriate speech from T1 to T2; these improvements were maintained from T2 to T3.


Discussion: The combination of a professional network and a standardized protocol for clinical assessment has promise as a strategy for improving professional competence and facilitating specialized mental health services for autistic individuals with ID and psychiatric disorders across an extensive geographical area.

Developing a Logic Model for the Triple-C Intervention: A Practice-Derived Intervention to Support People with Intellectual Disability and Challenging Behavior

TOURNIER, Tess
HENDRIKS, Alexander H C
JAHODA, Andrew
HASTINGS, Richard P
EMBREGTS, Petri J C M
2020

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Partly due to a lack of evidence-based methods to support people with intellectual disability (ID) and challenging behavior, their needs are often poorly met. One way to generate rapid evidence is to systematically describe and monitor interventions that are considered to be “good practice”—to develop evidence based on practical knowledge. This study describes the Dutch practice-based intervention Triple-C (Client, Coach, Competence). The intervention was developed in practice to support people with severe ID to borderline functioning and challenging behavior. The practice-based nature of Triple-C means that many of the professionals’ actions or activities are often underpinned by their implicit knowledge about the intervention they are delivering. Consequently, as the emphasis is on practice, the professionals can find it difficult to articulate how the intervention is operationalized and positive change achieved. This study aimed to assess the practical knowledge of Triple-C professionals and to develop an understanding of the mechanisms of change for Triple-C to improve understanding and to inform future research about the intervention. Through an iterative process, a logic model was developed to describe the intervention and its underlying assumptions. The development of the logic model was shaped using interviews with the founders, focus groups with support staff, psychologists, managers and members of the board of a service provider, and the analysis of published accounts of the Triple-C intervention. Data gathered from these sources were analyzed using content analysis. The logic model of the Triple-C intervention provides insight into the key elements of the approach, such as the need for unconditional supportive relationship and carrying out meaningful activities. Moreover, the potential relationship with existing evidence-based interventions such as Positive Behavioral Support and Active Support are described. Dening the underlying logic of a practice-based intervention like Triple-C is an important first step toward producing an evidence base for interventions developed from clinical practice.

Expectations management; employer perspectives on opportunities for improved employment of persons with mental disabilities in Kenya

EBUENYI, Ikenna D
VAN DER HAM, Aida J
BUNDERS-AELEN, Joske F G
REGEER, Barbara J
January 2019

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Purpose: In Kenya, the employment rate for persons with disabilities is about 1% compared to 73.8% for the general population, and the situation is even worse for persons with mental disabilities. Persons with mental disabilities are often regarded as “mad”, and stand little or no chance of employment. We undertook an exploratory study with employers and potential employers to understand factors that hinder or facilitate their employment and to gain insight into employers’ perceptions of mental disability.

 

Materials and methods: We adopted a mixed method study design, including in-depth interviews (n = 10) and questionnaires (n = 158) with (potential) employers in Kenya to explore the barriers and facilitators of employment for persons with mental disabilities.

 

Results: Out of the 158 employers who completed the questionnaire, only 15.4% had ever employed persons with mental disabilities. The perceptions that these persons are not productive and may be violent was associated with an unwillingness to employ them (OR: 10.11, 95%CI: 2.87–35.59 and OR: 3.6, 95%CI: 1.34–9.64, respectively). The possession of skills was the highest reported facilitator of employing persons with mental disabilities. Employers suggested that information about mental illness and the disclosure by prospective employees with mental disabilities are relevant for the provision of reasonable accommodation in the workplace.

 

Conclusion: Possession of skills and disclosure by persons with mental disabilities could improve their employability. Information targeted at all actors including employers, employees, government, and policymakers is necessary for balancing employers and employees expectations.

Nationwide implementation of a national policy for evidence-based rehabilitation with focus on facilitating return to work: a survey of perceived use, facilitators, and barriers

BJORK BRAMBERG, Elisabeth
JENSEN, Irene
KWAK, Lydia
October 2018

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Aim: The aim is to assess whether the national policy for evidence-based rehabilitation with a focus on facilitating return-to-work is being implemented in health-care units in Sweden and which factors influence its implementation.

 

Methods: A survey design was used to investigate the implementation. Data were collected at county council management level (process leaders) and clinical level (clinicians in primary and secondary care) using web surveys. Data were analyzed using SPSS, presented as descriptive statistics.

 

Results: The response rate among the process leaders was 88% (n = 30). Twenty-eight percent reported that they had already introduced workplace interventions. A majority of the county councils’ process leaders responded that the national policy was not clearly defined. The response rate among clinicians was 72% (n = 580). Few clinicians working with patients with common mental disorders or musculoskeletal disorders responded that they were in contact with a patient’s employer, the occupational health services or the employment office (9–18%). Nearly, all clinicians responded that they often/always discuss work-related problems with their patients.

 

Conclusions: The policy had been implemented or was to be implemented before the end of 2015. Lack of clearly stated goals, training, and guidelines were, however, barriers to implementation.

Gender and diagnostic impact on everyday technology use: a differential item functioning (DIF) analysis of the Everyday Technology Use Questionnaire (ETUQ)

KOTTORP, Anders
MALINOWSKY, Camilla
LARSSON-LUND, Maria
NYGARD, Louise
May 2018

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Background: As the use of everyday technology is increasingly important for participation in daily activities, more in-depth knowledge of everyday technology use in relation to diagnosis and gender is needed. The purpose of this study was to investigate the stability of the perceived challenge of a variety of everyday technologies across different samples of varying diagnoses including both males and females.

 

Methods: This cross-sectional study used 643 data records from clinical and research samples, including persons with dementia or related disorders, acquired brain injury, intellectual disability, various mental or medical disorders, and adults without known diagnoses. The Everyday Technology Use Questionnaire, comprising 93 everyday technology artifacts and services (items) measuring the level of everyday technology challenge and relevance of and perceived ability to use these was used for data gathering. A two-faceted Rasch model in combination with differential item functioning (DIF) analyses were used for comparing item hierarchies across samples.

 

Results: Only three items (3.2%) demonstrated a clinically relevant DIF by gender, and nine items (9.7%) by diagnosis.

 

Discussion: The findings support a stable hierarchy of everyday technology challenge in home and community that can facilitate planning of an accessible and inclusive society from a technological departure point

Nigerian Teachers’ Understanding of Autism Spectrum Disorder: A Comparative Study of Teachers from Urban and Rural areas of Lagos State

ODUNSI, Remi
PREECE, David
GARNER, Philip
2017

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Purpose: Autism Spectrum Disorder (ASD) is a lifelong developmental disability characterised by difficulties in social interaction and social communication, and restricted and repetitive behaviour (American Psychiatric Association, 2013). Despite its prevalence the world over, there is a paucity of research in some areas such as education, particularly in sub-Saharan Africa. This paper attempts to address the gap by exploring teachers’ understanding of ASD in Nigeria.

 

Method: Using an adapted version of the Knowledge About Childhood Autism Among Health Workers (KCAHW) questionnaire (Bakare et al, 2008), a survey was conducted among 177 mainstream primary teachers from Lagos State (112 from eleven urban schools and 65 from four rural schools).

 

Results: The total mean score on the Adapted KCAHW questionnaire among all the participating teachers was 10.81 ± 4.13 out of a possible total of 16. The mean score for urban teachers was 11.21 ± 4.31, while the mean score for rural teachers was 10.11 ± 3.75. In total, 46% of the urban teachers and 31% of the rural teachers demonstrated a generally accurate knowledge of ASD, with 15% (23 urban teachers and 4 rural teachers) of the sample answering all questions correctly.  Over 50% of urban teachers and almost 70% of rural teachers surveyed had only a low or moderate understanding of ASD.

 

Conclusions: This research supports previous studies that identified low professional knowledge and understanding of ASD, and a need for improved professional education and training. 

 

Limitations: The focus was on only one state within Nigeria, and only on mainstream primary schools. Further research is necessary across the educational age range as well as different geographical areas in the country.

Effect of Multidisciplinary Intervention on Clinical Outcomes of Children with Autism Spectrum Disorder in Mumbai, India

DALWAI, S H
MODAK, D K
BONDRE, A P
ANSARI, S
SIDDIQUI, D
GAJRIA, D
2017

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Purpose: To analyse clinical outcomes in terms of functional changes in children with Autism Spectrum Disorder (ASD), before and after receiving a multidisciplinary developmental intervention programme.

 

Methods: Structured goal-oriented multidisciplinary intervention, individualised to each child, was implemented through 5 child development centres in Mumbai, India, in 2014-2015. Secondary data analysis of 38 children diagnosed with ASD, in the age group of 2.1 - 6.1 years, was conducted. All children received occupational therapy and speech therapy, and parental counselling was also done. The average number of intervention sessions were 48-72 for occupational therapy (twice or thrice a week), 24-48 for speech therapy (once or twice a week) and 5-6 for parental counselling (once a month). Childhood Autism Rating Scale (CARS) and Vineland Social Maturity Scale (VSMS) were used for assessment, before and after intervention.

 

Results: Mean positive difference in CARS total scores through paired t-test was 4.18 (p < 0.0001). Significant positive changes in functional ability were observed in most of the sub-scales (relating to people; object use; visual response; verbal and non-verbal communication; taste, smell and touch response and use; level and consistency of intellectual response and general impression). Paired t-test also showed significant positive changes on all VSMS sub-scales, exceptSocialisation.

 

Conclusions: The model used in this multidisciplinary intervention, and adherence to its protocols, has the potential to improve functional ability (or the child’s adaptation to his/her condition) in children with ASD, in a region with limited awareness of developmental disabilities.

 

Limitations: Separate effects of factors outside the intervention could not be tested due to inadequate sample sizes for sub-analyses. Results also need to be validated by tests that do not depend on parental reporting (e.g., CARS and VSMS) but assess the performance of the child instead.

Perceived burden of care and reported coping strategies and needs for family caregivers of people with mental disorders in Zimbabwe

MARIMBE, Bazondlile D
COWAN, Frances
KAJAWU, Lazarus
MUCHIRAHONDO, Florence
LUND, Crick
2016

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Background: Mental health service resources are inadequate in low-income countries, and families are frequently expected to provide care for their relative with a mental disorder. However, research on the consequences of care giving has been limited in low-income countries, including Zimbabwe.


Objective: The study explored the perceived impact of mental illness, reported coping strategies and reported needs of family members of persons diagnosed with bipolar affective disorder or schizophrenia attending a psychiatric hospital in Harare, Zimbabwe.


Methods: A purposive sample of 31 family members participated in in-depth interviews and focus group discussions using standardized study guides. Participants were also screened for Common Mental Disorders (CMD) using the 14-item Shona Symptom questionnaire (SSQ). Qualitative data were analyzed thematically. Statistical Package for Social Sciences (SPSS version 16) was used for quantitative data analysis.


Results: Caregivers experienced physical, psychological, emotional, social and financial burden associated with care giving. They used both emotion-focused and problem-focused coping strategies depending on the ill family members’ behaviours. Seeking spiritual assistance emerged as their most common way of coping. Twenty one (68%) of the caregivers were at risk of CMD and were referred to a psychiatrist for further management. Caregivers required support from health care professionals to help them cope better.


Conclusion: Caregivers carry a substantial and frequently unrecognized burden of caring for a family member with mental disorder. Better support is needed from health professionals and social services to help them cope better. Further research is required to quantitatively measure caregiver burden and evaluate potential interventions in Zimbabwe.
 

Relationships between Sense of Coherence, Coping Strategies and Quality of Life of Parents of Children with Autism in Malaysia: A Case Study among Chinese Parents

Siah, P C
Tan, S H
2016

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Purpose: This study aimed to examine the relationships between Sense of Coherence (SoC), Coping Strategies and Quality of Life (QoL) of parents of children with autism in Malaysia.

 

Method: Purposive sampling was used to recruit parents of children with autism from 3 Autism Centres run by NGOs. The parents were asked to complete a questionnaire.

 

Results: The results of the study show that SoC and cognitive reframing are important factors that are associated with QoL.

 

Conclusions: It is recommended that policy-makers and programmers at the Autism Centres conduct more training workshops for parents of children with Autism Spectrum Disorder (ASD), so that their overall QoL can be improved.

 

Limitations: Future studies could recruit more participants, especially parents at government centres.

Problem Behaviour and Academic Grade Level Performance of Adjudicated Children with Juvenile Delinquency

VENKATESAN, S
SWARNALATHA, G
2013

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Purpose: This paper attempted to profile the contemporary grade level academic performance as well as the frequency, spread and intensity of problem behaviour in relation to a few associated variables, of children adjudged as juvenile delinquents in India.

 

Method: A cross-sectional exploratory survey design was employed, with randomised convenience sampling of 66 inmates, between 9 and 18 years of age, from two representative Observation Homes. To ascertain their current grade levels, a criterion referenced ‘Grade Level Assessment Protocol’ was prepared exclusively for this study. Another standardised ‘Behaviour Assessment Scale for Indian Children with Mental Retardation, Part B’ was used to profile their problem behaviour.

 

Results: The contemporary academic performance results satisfy the conventional two-grade discrepancy criteria, usually postulated for identifying children with learning disabilities. Among the associated variables examined in this study, inmates who were booked under sections of the Indian Penal Code showed significantly greater academic grade discrepancy compared to the other children. Similarly, poorer academic performance, greater grade discrepancy, as well as higher frequency, spread and intensity of reported problem behaviour were found among children from intact family backgrounds, where parents were illiterates or educated below primary school level, and more among boys than girls, and among those in the 10-12 year age group.

 

Conclusions: While these are tentative findings, they call attention to the need for extensive research on the possible links between academic performance, under achievement and learning disabilities, and juvenile delinquency in this country.

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