Assessing clinicians' consultation with people with profound learning disability: producing a rating scale

This paper describes the development of a scale for assessing clitiicians’ communication with people with profound learning disability. Four psychiatrists and four nurses were assessed completing three simple non-invasive clinical procedures—blood pressure, pulse and axillary temperature—with people with profound learning disability. Videotaped assessmetit of consultations was performed by three experienced speech and language therapists using a previously designed scale for analysing encounters with people with mild learning disability. This led to the production of a new scale specifically for people with profound learning disability. A significant inter-rater reliability was found between the three speech therapists for total scores (rater a-b, corr = 0·654, P= 0·006; rater a–c, corr = 0·795, P= 0·0001: rater b–c, corr = 0·673, P = 0·004). Significant reliability between raters was also found for the subsections of verbal behaviour and non-verbal behaviour.     

Burnout in direct care staff in intellectual disability services: a factor analytic study of the Maslach Burnout Inventory

Background There is gathering research interest in the well‐being of staff working in services for people with intellectual disability (ID), including the assessment of burnout and its correlates. However, no previous studies have considered the applicability of the main three dimensions of burnout to staff in ID services. Methods Data were analysed from two samples of staff (total n = 184) who participated in research studies that included completion of the Maslach Burnout Inventory (MBI). Results Nineteen of the MBI items loaded clearly onto factors closely resembling the three original subscales: emotional exhaustion, depersonalization and personal accomplishment. Internal consistency for the three MBI subscales was fair to good (range 0.68–0.87). Conclusions The original three MBI dimensions were found to be highly relevant to the present sample of staff. The analyses support the construct validity and reliability of the MBI for staff in ID services.     

A pilot study of the reliability and validity of the Caregiver Activity Survey – Intellectual Disability (CAS-ID)

Background People with Down's syndrome (DS) are at increased risk of Alzheimer‐type dementia (AD) when compared to the general population. Despite AD being a serious progressive disorder, little attention has been paid to the impact of the illness on formal caregivers. In the general population, the Caregiver Activity Survey (CAS) is used to measure time spent by family caregivers assisting people with AD in their day‐to‐day activities of living. In order to plan appropriate models of health and social care effectively for people with AD and DS, it is imperative that the care requirements of individuals at different stages of dementia are realized. An amended version of this survey, the Caregiver Activity Survey – Intellectual Disability (CAS‐ID), was developed and tested for use by professional caregivers in the present study. Methods The CAS‐ID was administered to 30 people with DS and their caregivers. Convergent validity was tested by comparing the results of the CAS‐ID to other validated tests for cognitive and functional impairment in individuals with DS. Test–retest and inter‐rater reliability were investigated. Results The final version of the CAS‐ID consists of eight items: dressing, bathing/showering, grooming, toileting, eating and drinking, housekeeping, nursing care‐related activities, and supervision/ behaviour management. The scale had excellent test–retest reliability, and correlated strongly with the Down Syndrome Mental Status Examination (DSMSE; r = ?0.770), the Test for Severe Impairment (TSI; r = ?0.881) and the Daily Living Skills Questionnaire (DLSQ; r = ?0.855). Conclusions The present authors provide preliminary evidence for the validity and reliability of the CAS‐ID. This instrument offers a means of identifying and measuring care and resources requirements as this population experiences symptoms of dementia. Such information may help assist healthcare professionals in planning supports and services to address the care challenges evidenced at different stages of the disease process.     

Validity and reliability of the Spanish version of the diagnostic assessment for the severely handicapped (DASH-II)

Background and objectivesThe DASH-II scale is a specific instrument for measuring psychopathological symptoms in people with severe and profound intellectual disability (ID). The aim of the study is the validation of the Spanish version, evaluating its reliability and validity. At the same time we examine the prevalence of mental disorders in our sample.Material and methodsTwo reviewers independently passed the Spanish version of the DASH-II (DASH-II-S) to 83 users to establish inter-rater reliability. To assess inter-rater reliability or test–retest reliability, fifty participants were reassessed by the same rater within 7 days.ResultsDASH-II-S showed good internal consistency (Cronbach's α = 0.879) and good reliability, both intra and inter-rater reliability. The prevalence of psychopathology in the sample is 94%, and the use of psychotropic drugs is also high, with 61.4% receiving one or more antipsychotics.ConclusionsDASH-II-S is a valid and reliable instrument that can be used for the assessment of psychopathology in people with ID. The translated version retains the psychometric properties of the original English version. Moreover, the high prevalence of mental disorders in this population may explain the widespread use of psychotropic drugs, but it forces us to continuous reassessment and justification.     

The relationship between levels of mood, interest and pleasure and 'challenging behaviour' in adults with severe and profound intellectual disability

Background Research on affective disorders in adults with intellectual disability (ID) suggests that depression may not present a ‘classic picture’ in individuals with severe and profound ID, but may include challenging behaviours, which are referred to as ‘atypical symptoms’, such as self‐injury, aggression and irritability. The aim of the present study was to explore whether there is an association between constructs relating closely to the core symptoms of depression and challenging behaviours in adults with severe and profound ID. Method Mood and levels of interest and pleasure were measured in 53 adults with severe or pro‐found ID using the Mood, Interest and Pleasure Questionnaire (MIPQ). Results Two groups of adults were identified based on MIPQ scores: (1) a ‘low mood’ group (lowest score = 12); and (2) a comparison group (highest scoring = 12). The groups were clearly differentiated on the MIPQ (P < 0.0001), but were comparable on age, gender and medication use. The Challenging Behaviour Interview showed no difference between the two groups in self‐injury, aggression or disrupting the environment. A secondary analysis revealed that participants who showed challenging behaviour scored significantly lower on the MIPQ than those who did not show challenging behaviour. Conclusions Possible reasons for these results and considerations for future studies are discussed.     

Feasibility, reliability and validity of the Dutch translation of the Anxiety, Depression And Mood Scale in older adults with intellectual disabilities

Background

The informant-based Anxiety, Depression And Mood Scale was translated into Dutch and its feasibility, reliability and validity in older adults (aged ≥ 50 years) with intellectual disabilities (ID) was studied.

Method

Test-retest (n = 93) and interrater reliability (n = 83), and convergent (n = 202 and n = 787), discriminant (n = 288) and criterion validity (n = 288) were studied. Convergent and criterion validity were studied for the Depressed mood and General anxiety subscales. Subgroups based on level of ID and autism have been made to study the criterion validity. Psychiatric diagnoses based on the PAS-ADD Interview were used as gold standard.

Results

All subscales had good internal consistency (α ≥ 0.80), excellent test-retest reliability (ICC ≥ 0.75) and good interrater reliability (ICC ≥ 0.74), except for the Social avoidance subscale (ICC = 0.57). The Depressed mood subscale showed low correlation (r = 0.44) with the self-report Inventory of Depressive Symptomatology, high correlation with the informant-report Signalizing Depression List for people with ID (r = 0.71) and no correlation with the PAS-ADD's sleep disorders subscale (r = 0.15). Its sensitivity ranged from 73 to 80%, and its specificity from 71 to 79%. The General anxiety subscale showed low correlation with the self-report scales: Glasgow Anxiety Scale (r = 0.37) and Hospital Anxiety and Depression Scale (r = 0.41), and no correlation with the sleep disorder subscale (r = 0.02). Its sensitivity ranged from 67 to 100%, and its specificity from 48 to 81%.

Conclusions

The Dutch translation of the ADAMS is reliable and sufficiently valid to screen for anxiety and depression in older people with ID.     

Improvement of inter-rater reliability of PANSS items and subscales by a standardized rater training

The present evaluation focused on the inter-rater reliability of single items and subscales of the Positive and Negative Syndrome Scale (PANSS) before and after a standardized rater training. The results of two independent studies comprising n=23 (study I) and n= 12 (study II) psychiatrists and videotaped interviews with schizophrenic patients were analysed. Chance-corrected coefficients of rating agreement with expert standards (weighted κ) were computed for single items and subscales of the PANSS. The results clearly demonstrate the importance of rater trainings. After three training sessions, 90% of the PANSS items reached an acceptable level of reliability (κ_w>0.40) in both evaluated studies, and for 80% of the PANSS items values of κ_w>0.60 were achieved.     

Psychometric evaluation of a Swedish version of the Reiss Screen for Maladaptive Behavior

Background People with intellectual disability (ID) are afflicted by mental health problems to a greater extent than other individuals, and the coexistence of ID and mental health problems involves diagnostic as well as treatment difficulties. Methods A Swedish version of the Reiss Screen for Maladaptive Behavior (RSMB), an instrument used for identification of mental health problems in people with intellectual disability (ID) was evaluated in terms of inter‐rater agreement, internal consistency, item grouping and criterion validity based on a random sample and a clinical group of adults with ID. Results The Swedish version of the RSMB had moderate‐to‐low inter‐rater agreement on specific items and good internal consistency. The total score was considered to be a fairly reliable measure of a positive or negative result on the RSMB. A principal component analysis yielded seven interpretable components. A close resemblance in sets of items between the Swedish version and the original version of RSMB was found for three subscales: Aggressive Behaviour, Avoidance Disorder and Depression (Behavioural Signs). The outcome of the criterion validity analysis indicated a higher rate of false negatives than false positives. Conclusions The potential influence of concurrent psychopharmacological treatment is discussed. It is concluded that the Swedish version of the RSMB can be used as intended by staff as a primary screening device for the identification of mental health problems among people with ID in a Swedish setting.     

Feasibility, reliability and validity of the Spanish version of Psychiatric Assessment Schedule for Adults with Developmental Disability: a structured psychiatric interview for intellectual disability

Background Over 30% of people with intellectual disability (ID) have a comorbid psychiatric disorder. However, there are few assessment instruments available for international use and cross‐cultural validation studies of these instruments are rare. The aim of the present study was to standardize the Spanish version of the Psychiatric Assessment Schedule for Adults with Developmental Disability (PAS‐ADD‐10), a semi‐structured interview for people with ID. Methods After a conceptual translation, feasibility (i.e. applicability, acceptability and practicality) and reliability analyses were carried out. The predictive validity of the PAS‐ADD‐10 CATEGO‐5 codings was also examined (i.e. positive and negative predictive values). Four independent raters with wide‐ranging experience in quantitative evaluation and psychiatric assessment of ID evaluated a sample of 80 subjects with ID and borderline intellectual functioning at the AFANAS occupational centre in Jerez, Southern Spain. The ICD‐10 codes were used for psychiatric diagnosis. Results The practicality of the PAS‐ADD‐10 is limited because of the need for previous standardization of SCAN interviews. Nevertheless, its overall feasibility was judged adequate by raters and the PAS‐ADD‐10 was considered extremely useful for training. Test–retest and inter‐rater reliability kappa values were moderate to high. The CATEGO coding showed limited validity because of overdiagnosis of anxiety disorders and underdiagnosis of mood and psychotic disorders (positive predictive value = 74%, negative predictive value = 76%). Conclusions The PAS‐ADD‐10 is a useful tool for standard psychiatric assessment of people with ID; however, CATEGO codings show low validity and a series of modifications should be considered before this instrument is used extensively in Spain. In this regard, a study on the clinical usefulness of the PAS‐ADD‐10 in patients with ID and severe mental disorders has been undertaken.     

The ComFor: an instrument for the indication of augmentative communication in people with autism and intellectual disability

Background The ComFor (Forerunners in Communication) is an instrument to explore underlying competence for augmentative communication. More specifically, it measures perception and sense‐making of non‐transient forms of communication at the levels of presentation and representation. The target group consists primarily of individuals with autism and intellectual disability (ID) without or with only limited verbal communication. The ComFor is suitable for children and adults with a developmental level between 12 and 60 months. This paper describes the theoretical framework and structure of the ComFor, the results of a study on its psychometric properties and its clinical uses. Method The ComFor was tested on a sample of 623 children and adults from the Netherlands and Flanders: a group with autism and ID (n = 310); a group with ID without autism (n = 174); and a control group of typically developing children (n = 139). Results The data generally support the reliability and validity of the ComFor. Internal consistency, inter‐rater and test–retest reliability were found to be good. Construct validity (internal structure, convergent and divergent patterns) was established in different ways. The criterion‐related validity has yet to be established, as predictive data are not available at the moment. Conclusion Taken together, the results indicate that the ComFor is a promising instrument to explore underlying competence for augmentative communication. Areas for future research are outlined and the clinical relevance is discussed.     

Psychometric evaluation of a Dutch version of the Mini PAS‐ADD for assessing psychiatric disorders in adults with different levels of intellectual disability

Background People with intellectual disabilities (ID) have an increased vulnerability to develop psychiatric problems. Moreover, the early recognition and the accurate diagnosis of psychiatric disorders in the population of persons with ID are challenging. Method A Dutch version of the Mini PAS‐ADD, which is a screening instrument for identification of mental health problems in people with ID, was evaluated in terms of internal consistency, interinformant reliability, item grouping and criterion validity based on a large‐scale random sample (n = 377) and a clinical sample (n = 99) of adults with ID. Results The Dutch version of the Mini PAS‐ADD showed moderate internal consistency, and moderate concordance among informants. Both aspects of the reliability were comparable for different levels of ID. A factor analysis largely confirmed the scale structure. Concurrent validity with the Reiss Screen for Maladaptive Behavior was high for the Depression, Psychosis and Autism scale. The outcome of the criterion‐validity analysis indicated high specificity. The sensitivity for specific psychiatric disorders by the corresponding scales was moderate, but the general sensitivity for the presence of psychopathology on the basis of any of the scales was satisfying. Conclusions The present research reconfirmed the use of the Mini PAS‐ADD as a primary screening device for the identification of mental health problems among people with ID.     

The Equity Perception Scale – Intellectual Disability Services (EPS-IDS): Evaluating the reliability and validity of a new measure

Abstract

Background?The aim of this paper was to evaluate the reliability and validity of the Equity Perception Scale – Intellectual Disability Services (EPS-IDS), a detailed measure of staff equity perceptions in services for people with intellectual disability (ID). The EPS-IDS contains 3 relationship indices that assess staff relationships with their employing organisation, their co-workers, and service users.

Method?Postal questionnaires were used to collect quantitative data from a purposive sample of ID service staff.

Results?The EPS-IDS was found to have good internal consistency reliability. The overall test–retest reliability of the measure, however, was found to be less satisfactory. With the exception of the co-worker relationship index, the EPS-IDS indices were found to have promising validity.

Conclusions?The findings from the study suggest that the EPS-IDS shows some promise as a measure of the equity perceptions of ID service staff. Further refinements to the relationship indices, however, may be required.     

Validation of the Subjective and Objective Family Burden Interview (SOFBI/ECFOS) in primary caregivers to adults with intellectual disabilities living in the community

Background There is little information on the psychometric properties of instruments for assessing family care burden in adults with intellectual disabilities (ID). The aim of this study is therefore to analyse the usefulness of the ‘Subjective and Objective Family Burden Interview’ (SOFBI) in the assessment of principal caregivers in Spain. Methods The SOFBI was administered to 166 principal caregivers of adults with ID in a vocational centre. The psychometric analysis included: internal consistency, inter‐rater and test–retest reliability, construct validity, convergent validity with the World Health Organization's Disability Assessment Schedule II, and feasibility. Results The Cronbach's alpha was 0.88 for the overall interview and always above 0.7 in the quantitative subdomains. The Kappa coefficients for test–retest were between 0.5 and 0.8, whereas inter‐rater agreement was nearly perfect. Maximum‐likelihood factor analysis showed four well‐defined factors, which fitted the previously designed domains. Feasibility was also good. Conclusions The SOFBI is a multi‐domain, modular instrument which is feasible, reliable and valid for measuring the burden of family caregivers to adults with ID living in the community.     

Advances in Mental Health Care: Five N = 1 Studies on the Effects of the Robot Seal Paro in Adults With Severe Intellectual Disabilities

Background: The evidence base for psychological treatments for autism and mood disorders in people with moderate to severe intellectual disabilities (ID) is limited. Recent promising robot-based innovations in mental health care suggest that robot-based animal assisted therapy (AAT) could be useful to improve social skills and mood in people with moderate to severe ID. This study explores the efficacy of the innovative therapeutic robot seal Paro on alertness and mood in adults with moderate to severe ID. Method: Five N = 1 studies were performed in adults (59–70 years) with moderate to severe ID. During a control phase of four weeks, participants could interact with a plush seal, which was replaced by the robot seal Paro during an equally long treatment phase. Results: In one participant, alertness and mood, as rated by supervisors, improved during the treatment phase as compared to the baseline phase. The other four participants did not improve on either of the outcome measures. Conclusion: We conclude that robot-based AAT does not have clear beneficial effects on alertness and mood in adults with moderate to severe ID, but that positive interactions with the robot seal could be of therapeutic value in itself.     

Development,reliability, and validity of a self-assessment scale for dementia care management

Background

This study aimed to develop a self-assessment scale for care management of people with dementia and examine its reliability and validity.

Methods

Based on Bloom's Taxonomy, previous research, and experts' opinions on dementia and care management, a scale consisting of 18 items was developed to assess care managers' attitudes, knowledge, and skills in their management of people with dementia. To examine the scale's reliability and validity, data were collected from 638 care managers. Construct validity using exploratory factor analysis, known-group validity, and internal consistency reliability of the scale were evaluated.

Results

Exploratory factor analysis supported the construct validity with a four-factor model and explained 59.1% of the total variance. Following were the four factors: Factor I ‘Person centred care’; Factor II ‘Understanding of disease characteristics, treatment and care’; Factor III ‘Understanding of people with dementia and care management according to their characteristics’; and Factor IV ‘Utilization of local resources surrounding people with dementia’. Regarding the known-group validity, results showed that the group with a qualified chief care manager scored significantly higher than the group without one on Factors I (P = 0.013) and III (P = 0.026). Cronbach's alpha coefficient for the 18 items was 0.928.

Conclusions

The findings prove that the scale has acceptable reliability and validity, and can help care managers reflect on their practice. Future research is desirable to measure the validation of change in the scale.     

Operational definitions improve reliability of the age‐related white matter changes scale

Background and purpose: Although the age‐related white matter changes (ARWMC) scale has been advocated to be applicable to both MRI and CT for assessing the severity of WMC, its inter‐rater reliability on CT is only fair. We aimed to operationalize the ARWMC scale and investigate the effect of this operationalization on the reliability and validity on MRI and CT. Methods: Operational definitions of the ARWMC scale were derived from Erkinjuntti research criteria for subcortical vascular dementia and Scheltens scale. Using original and operationalized ARWMC scale, eight observers recorded the time for rating per MRI and per CT. We investigated the inter‐rater and intrarater reliability as well as validity against volume using data from 97 stroke patients. Results: Inter‐rater reliability of the operationalized scale on CT (0.874, 95% confidence interval [0.780–0.934]) was better than the original scale (0.569, 95% confidence interval [0.247–0.775]). Its intrarater reliability on CT (0.869) and reliability on MRI (inter‐rater: 0.860; intrarater: 0.838) was comparable with the original scale (CT intrarater: 0.750 and on MRI inter‐rater: 0.845; intrarater: 0.853). The time required to administer the operationalized scale (4′2″ for MRI and 1′18″ for CT) was similar to that of the original scale (3′56″ for MRI and 1′16″ for CT). The original scale and operationalized scale also significantly correlated with WMC volume (operationalized scale ρ = 0.613, P < 0.001, original scale ρ = 0.638, P < 0.001). Conclusion: Operational definitions improve the inter‐rater reliability of ARWMC scale on CT, and it correlates with volumetric measurement.     

Reliability and validity of the Japanese version of the Behavior Problem Inventory-Short Form

BackgroundThe Behavior Problems Inventory-Short Form (BPI-S), which assesses behavior problems in individuals with intellectual disabilities (ID), is a shorter version of the BPI-01. This study investigated the reliability and validity of the BPI-S Japanese version (BPI-S-J) for adolescents/adults with ID and behavior problems.MethodsThe test–retest reliability included participants with ID and behavioral problems who were enrolled in welfare services. For test–retest reliability, 42 caregivers independently responded to the BPI-S-J every two weeks. Inter-rater reliability was independently assessed using the BPI-S-J by two caregivers who were familiar with the 42 participants. The participants of the validity assessment were 227 students from special needs schools or patients with ID admitted to medical institutions. The total frequency total score was compared based on the degree of ID. To examine the criterion-related validity, we analyzed the total frequency score, the total score of the Criteria for Determining Severe Problem Behavior (CDSPB) and the total score of the Aberrant Behavior Checklist-Japanese version (ABC-J).ResultsThe BPI-S-J of test–retest reliability was satisfactory (intra-class correlation; ICC) = 0.954), and the total score significantly (ICC = 0.721) represented good inter-rater reliability. For the validity, the BPI-S-J score of participants who had severe and profound ID was significantly higher than those who had mild and moderate ID. Significant correlations were observed between the BPI-S-J score and CDSPB score (r = 0.499), and the ABC-J score (r = 0.699), indicating adequate criterion-related validity.ConclusionThis study showed the utility of the BPI-S-J to assess behavior problems in the Japanese ID population.     

The “make or break” impact of family dynamics on psychological outcomes in focal epilepsy

Objective

Living with epilepsy can shape the dynamics of the whole family unit. The first objective of this study was to establish the reliability and validity of our purpose-built online family mapping tool: “Living with Epilepsy.” Our second objective was to identify distinct patterns of emotional closeness between family members (family typologies), and to explore (1) whether family typologies are shaped by epilepsy-related factors, and (2) which typologies confer optimal psychological outcomes to people with epilepsy.

Methods

Ninety-one adults with chronic epilepsy and their caregivers (n = 56) participated and 70 similarly aged healthy controls and 36 caregiver controls (N = 253). Purpose-built software assessed a range of epilepsy-specific psychosocial issues, including family mapping. Questionnaires validated for epilepsy evaluated mood and quality of life (QOL).

Results

The reliability and validity of the family mapping tool was established. Family maps revealed three typologies varying in emotional closeness, each with distinct patterns of healthy vs maladaptive family behavior: Extremely Close (32%), Close (54%), and Fractured (14%). There was no difference in the frequency of typology between epilepsy and control families (p > .05). Within the epilepsy cohort, however, patients with seizure onset in childhood largely belonged to the extreme typologies: Extremely Close (47%) or Fractured (42%). In comparison, those with adolescent or adult onset commonly belonged to the moderate typology: Close (53%). People with epilepsy from Extremely Close families reported significantly higher QOL (p = .013) and lower mood symptoms (p = .008) relative to other typologies; no such association was found for controls or caregivers (p > .05).

Significance

These findings suggest that adults whose epilepsy commenced in childhood are likely to have extreme family dynamics characterized by either being brought closer together or driven apart. Extremely close families appear highly adaptive for people with epilepsy, bringing benefits for mood and QOL not seen in their caregivers or controls. The results provide strong empirical support for the value of an emotionally supportive family when living with epilepsy and suggest that fostering healthy connections within epilepsy families can optimize long-term patient well-being.     

The Reliability of an Education-related Self-efficacy Scale for People with Psychiatric Disabilities

We investigated the reliability of the Education-related Self Efficacy Scale (ESS-40), a measure of self-efficacy at a core task level designed for people with psychiatric disabilities. Sixty community residents with schizophrenia or schizoaffective disorder participated. The ESS-40 was administered twice via telephone interview. Short cycle test–retest reliability was very good for the total score and most items. The measure demonstrated signs of a coherent internal structure, adequate face validity, good client acceptability, and promising utility. The reliability evidence supports its use in community mental health services and in psychiatric rehabilitation settings. Sensitivity and predictive validity require further investigation.