Measuring empathy in youth and young adults with mild intellectual disabilities or borderline intelligence in residential care - The validation of an adapted basic empathy scale: The BES-MID.

Youths with mild intellectual disability (MID) are assumed to show impaired cognitive and affective empathy. However, the use of linguistic and conceptual complex empathy measures set limits to the valid and reliable assessment of empathy in youth with MID or borderline intelligence (BI). The objective of the present study was to evaluate the validity and reliability of the adapted BES-MID as an instrument for assessing cognitive and affective empathy in youth and young adults (12-24years) with MID/BI. The current study was conducted in a sample of N = 146 youth and young adults with MID or BI Results from Confirmatory Factor Analyses confirm the two-factor structure of affective and cognitive empathy for the BES-MID. While the original BES cannot be used to assess empathy in youth and young adults with MID or borderline intelligence, the BES-MID showed satisfactory validity and reliability in youth and young adults with MID or borderline intelligence. Despite some limitations and the need for further research, the current study has resulted in a valid and reliable empathy scale (BES-MID) for assessing cognitive and empathic abilities in youth and young adults with MID or borderline intelligence, which is important for future empathy research in youth and young adults with MID or borderline intelligence.

An Individual Music Intervention for Adults With Intellectual Disabilities and Challenging Behavior: Protocol for a Randomized Controlled Trial.

BACKGROUND: Individuals with intellectual disabilities (ID) are more likely to have problems with executive functioning (EF) and challenging behavior (CB), which are negatively linked to well-being. Among clinical populations, music interventions have been shown to improve various outcome measures, such as CB and EF. Until now, no randomized controlled trials (RCTs) have been conducted to examine the effectiveness of an individual music intervention for adults with ID and CB. OBJECTIVE: The study aims to identify the effect and feasibility of an individual music intervention compared with care-as-usual for people with ID and CB. METHODS: In this study, a 2-group RCT with a pretest, posttest, and follow-up assessment after 8 weeks is presented. Participants of the music intervention condition will receive 16 individual music sessions within 8 to 10 weeks. The music intervention will be guided by a manual for music workers, in which every session will have a different focus (introduction, emotions, different EF, and end performance). Participants receiving care as usual will function as a control group. After the research is finished, they will be offered a budget, which they can spend on musical activities or musical instruments as they wish. Assessments will include caregiver rating scales and self-report questionnaires and tests, which will assess outcome measures of CB, well-being, depression, anxiety, self-esteem, and 4 domains of EF. A process evaluation will be conducted after the completion of the study, which entails the analysis of data on multiple aspects of the intervention and the study overall. RESULTS: Enrollment commenced in July 2021, and data collection ended in May 2023. A total of 97 participants were recruited, with 44 participants allocated to the intervention group and 53 allocated to the control group. Data will be analyzed after this protocol has been accepted for publication. CONCLUSIONS: Because there are currently no published RCTs of an individual music intervention for adults with ID and CB, this study will provide insight into the effectiveness and experiences of an individual music intervention for this target group. TRIAL REGISTRATION: International Clinical Trials Registry Platform NL8482; http://tinyurl.com/4565s5pd. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52497.

Photographic visualization of stories: documenting the experiences of people with intellectual disabilities with guided photovoice.

People with intellectual disabilities are often excluded from participation in research, whilst research has the potential to enhance positive change in their lives. In the current study, using a guided photovoice procedure, the experiences of people with intellectual disabilities regarding participation in research are evaluated. A total of 14 participants with intellectual disabilities were interviewed using guided photovoice. Through thematical analyses the experiences of people with intellectual disabilities regarding photovoice are discussed. Benefits were taking time, visual cues and the opportunity to speak out. Challenges were abstract concepts and aftercare. Guided photovoice helps to better understand the perspective of people with intellectual disabilities and thus can help to improve their quality of life. People with intellectual disabilities were interested in taking part in the current research project and experienced participating as a positive experience. However careful planning and expertise in communication with people with intellectual disabilities is necessary to include people with intellectual disabilities in research.

Active music making and leisure activities for people with intellectual disabilities: A cluster randomized pilot study.

AIM: A pilot cluster randomized controlled trial was performed to evaluate the effects of a music group intervention and a leisure activities group intervention on well-being, self-esteem, social acceptance, challenging behaviour and three components of executive functions (inhibitory control, cognitive flexibility and visual working memory) of adults with intellectual disabilities (ID). METHOD: Twenty-nine participants living in four residential facilities for people with ID were randomized into a music or a leisure activities group intervention. Sixteen weekly sessions of one hour were performed with six to eight participants per group. Measurements were carried out at baseline, post-intervention and 11 weeks follow- up. Results were analysed with linear mixed models. RESULTS: The leisure activities group intervention improved more than the music group intervention on internalizing behaviour overall and on inhibitory control at post-intervention. However, further analyses showed that this improvement was only significant in one of the two leisure activities facilities. CONCLUSION: A leisure activities group intervention seems a promising intervention to improve internalizing behaviour and inhibitory control of younger adults with mild ID. Implications for the delivery of leisure activities group interventions and especially music group interventions are discussed. WHAT THIS PAPER ADDS: Involvement in leisure activities of people with ID is associated with better well-being, an improvement in social skills and a reduction in emotional and behavioural problems. Active music making, as a specific form of leisure activities, seems to improve well-being, social acceptance and challenging behaviour (CB) as well. Moreover, in different (non-clinical) groups a significant effect of active music making has been found on self-esteem and executive functioning (EF). So far, little attention has been paid to the possible positive effects of active music making on adults with ID. In the current paper, a randomized controlled trial (RCT) was conducted to compare the post-intervention and follow-up measurements with baseline measurements between a music group intervention and a leisure activities group intervention on well-being, self-esteem, social acceptance, CB and EF in adults with ID. Multilevel models were used to detect possible intervention effects of 16 weekly sessions. Overall, inhibitory control and internalizing behaviour improved more amongst the participants of the leisure activities group than amongst the participants of the music group. This was mainly the case for younger participants who had mild ID. These effects are discussed and recommendations regarding the improvement of a music intervention for people with ID are presented.

Resilience in the face of adversity: How people with intellectual disabilities deal with challenging times.

In people with intellectual disabilities research and policy are often still focused on risks or the prevention of risks. Research on the process of resilience is in its infancy in the care for people with intellectual disabilities. In the current study, applying a guided photovoice procedure, people with intellectual disabilities were asked what helped them to deal with adverse events. Additionally, informants from their social network were asked to reflect on this question. The following sources of resilience were identified: acceptance, autonomy, beautiful memories, perseverance, physical wellbeing, positive emotions, social skills, spirituality, activities, a home and the social network. Our findings provide practical guidelines for clinicians to talk about resilience with people with intellectual disabilities. Suggestions for future research are made that will contribute to the process of resilience and inclusion of people with intellectual disabilities.

A Dutch Perspective on Two Health Related Issues Regarding Children and Adolescents with Intellectual Disabilities.

In this opinion article, we want to inspire readers by highlighting recent Dutch developments about two important health related issues regarding the quality of life of children and adolescents with intellectual disabilities. Firstly we focus on the prevention, treatment and reduction of (disability-related) somatic and psychological problems by specialized physicians for people with intellectual disabilities. Secondly, we emphasize the importance of the prevention of adverse childhood experiences and the promotion of protective and compensatory experiences. Subsequently, we stress the need for trauma informed care to support children and adolescents with intellectual disabilities who encounter adverse events. A specialized and multidisciplinary approach is advised as is the need for promoting healthy (family) relations with a focus on (co)regulation and connection as a basis for recovery.

Music therapy for stress reduction: a systematic review and meta-analysis.

Music therapy is increasingly being used as an intervention for stress reduction in both medical and mental healthcare settings. Music therapy is characterized by personally tailored music interventions initiated by a trained and qualified music therapist, which distinguishes music therapy from other music interventions, such as 'music medicine', which concerns mainly music listening interventions offered by healthcare professionals. To summarize the growing body of empirical research on music therapy, a multilevel meta-analysis, containing 47 studies, 76 effect sizes and 2.747 participants, was performed to assess the strength of the effects of music therapy on both physiological and psychological stress-related outcomes, and to test potential moderators of the intervention effects. Results showed that music therapy showed an overall medium-to-large effect on stress-related outcomes (d = .723, [.51-.94]). Larger effects were found for clinical controlled trials (CCT) compared to randomized controlled trials (RCT), waiting list controls instead of care as usual (CAU) or other stress-reducing interventions, and for studies conducted in Non-Western countries compared to Western countries. Implications for both music therapy and future research are discussed.

External sources promoting resilience in adults with intellectual disabilities: A systematic literature review.

BACKGROUND: Persons with an intellectual disability are at increased risk of experiencing adversities. The current study aims at providing an overview of the research on how resilience in adults with intellectual disabilities, in the face of adversity, is supported by sources in their social network. METHOD: A literature review was conducted in the databases Psycinfo and Web of Science. To evaluate the quality of the included studies, the Mixed Method Appraisal Tool (MMAT) was used. RESULTS: The themes: "positive emotions," "network acceptance," "sense of coherence" and "network support," were identified as sources of resilience in the social network of the adults with intellectual disabilities. CONCLUSION: The current review showed that research addressing sources of resilience among persons with intellectual disabilities is scarce. In this first overview, four sources of resilience in the social network of people with intellectual disabilities were identified that interact and possibly strengthen each other.

Self-Report Stress Measures to Assess Stress in Adults With Mild Intellectual Disabilities-A Scoping Review.

Stress has a major negative impact on the development of psychopathology and contributes to the onset of adverse physical conditions. Timely recognition and monitoring of stress-related problems are therefore important, especially in client populations that are more vulnerable to stress, such as people with mild intellectual disabilities (MID). Recent research on the use of physiological measures to assess stress levels emphasize that, in addition to these measures, self-report instruments are necessary to gain insight into the individual perception and impact of stress on daily life. However, there is no current overview of self-report stress measures that focus on the experience of stress in the present moment or in daily life. To provide an overview of the existing self-report stress measures for clinicians and researchers, a scoping review was conducted. In addition, to advise clinical professionals on the use of self-report measures of stress for people with MID, the results of an expert consultation were used to refine the preliminary findings. A systematic scoping literature search resulted in a total of 13 self-reported stress measures that met the final inclusion criteria, of which three were developed specifically for assessing stress in adults with MID (GAS-ID, LI, and SAS-ID). For each included self-report stress measure, the psychometric quality, assessment procedure, and suitability for adults with MID were reported. These were supplemented by the findings from the expert consultation. Implications for clinical practice on the use of self-report stress measures, particularly for people with MID, are discussed. Recommendations for future research and development are given.

Prevalence of and relationship between adverse childhood experiences and family context risk factors among children with intellectual disabilities and borderline intellectual functioning.

BACKGROUND: Adverse Childhood Experiences (ACEs) are an overlooked risk factor for behavioural, mental and physical health disparities in children with intellectual disabilities (ID) and borderline intellectual functioning (BIF). AIMS: To gain insight into the presence of the 10 original Wave II ACEs and family context risk variables in a convenience sample of children with ID and BIF in Dutch residential care. METHODS AND PROCEDURES: 134 case-files of children with ID (n = 82) and BIF (n = 52) were analysed quantitatively. OUTCOMES AND RESULTS: 81.7 % of the children with ID experienced at least 1 ACE, as did 92.3 % of the children with BIF. The average number of ACEs in children with ID was 2.02 (range 0-8) and in children with BIF 2.88 (range 0-7). About 20 % of the children with moderate and mild ID experienced 4 ACEs or more. Many of their families faced multiple and complex problems (ID: 69.5 %; BIF 86.5 %). Multiple regression analysis indicated an association between family context risk variables and the number of ACEs in children. CONCLUSIONS AND IMPLICATIONS: The prevalence of ACEs in children with ID and BIF appears to be considerably high. ACEs awareness in clinical practice is vital to help mitigate negative outcomes.

Assessing the quality of support and discovering sources of resilience during COVID-19 measures in people with intellectual disabilities by professional carers.

BACKGROUND: During COVID-19 measures face-to-face contact is limited and professional carers have to find other ways to support people with intellectual disabilities. COVID-19 measures can increase stress in people with intellectual disabilities, although some people may adapt to or grow from these uncertain situations. Resilience is the process of effectively negotiating, adapting to, or managing significant sources of stress and trauma. The current study aims to provide professional carers with new insights into how they can support people with intellectual disabilities. METHOD: An online survey was shared through the social media and organizational newsletters of MEE ZHN (a non-governmental organization for people with disabilities). The resilience framework by Ungar (2019) was adapted to fit to people with intellectual disabilities during COVID-19 measures. Statistical analyses were performed in SPSS statistics version 26. RESULTS: Results show that professional carers applied diverse and distal methods to maintain contact with people with intellectual disabilities during the COVID-19 measures. Professional carers reported a significant decrease in the quality of contact with clients with intellectual disabilities, but overall high levels of resilience in the same clients. IMPLICATIONS: Online methods of communication are possibly insufficient for professionals to cover all needs of people with intellectual disabilities. During this pandemic professionals should be aware of stress but also of resilience in people with intellectual disabilities.

Music Therapy Interventions for Stress Reduction in Adults With Mild Intellectual Disabilities: Perspectives From Clinical Practice.

Stress is increasingly being recognized as one of the main factors that is negatively affecting our health, and therefore there is a need to regulate daily stress and prevent long-term stress. This need seems particularly important for adults with mild intellectual disabilities (MID) who have been shown to have more difficulties coping with stress than adults without intellectual disabilities. Hence, the development of music therapy interventions for stress reduction, particularly within populations where needs may be greater, is becoming increasingly important. In order to gain more insight into the practice-based knowledge on how music therapists lower stress levels of their patients with MID during music therapy sessions, we conducted focus group interviews with music therapists working with adults with MID (N = 13) from different countries and clinical institutions in Europe. Results provide an overview of the most-used interventions for stress reduction within and outside of music. Data-analysis resulted in the further specification of therapeutic goals, intervention techniques, the use of musical instruments, and related therapeutic change factors. The main findings indicate that music therapists used little to no receptive (e.g., music listening) interventions for stress reduction, but preferred to use active interventions, which were mainly based on musical improvisation. Results show that three therapy goals for stress relief could be distinguished. The goal of "synchronizing" can be seen as a sub goal because it often precedes working on the other two goals of "tension release" or "direct relaxation," which can also be seen as two ways of reaching stress reduction in adults with MID through music therapy interventions. Furthermore, the tempo and the dynamics of the music are considered as the most important musical components to reduce stress in adults with MID. Practical implications for stress-reducing music therapy interventions for adults with MID are discussed as well as recommendations for future research.

Resilience in the face of adversity in adults with an intellectual disability: A literature review.

BACKGROUND: Persons with an intellectual disability are at a higher risk of experiencing adversities. The concept of resilience offers promising insights into facilitating personal growth after adversity. The current study aims at providing an overview of the current research on resilience and the way this can contribute to quality of life in people with intellectual disability. METHOD: A literature review was conducted in the databases PsycINFO and Web of Science. To evaluate the quality of the studies, the Mixed Method Appraisal Tool (MMAT) was used. RESULTS: The themes, autonomy, self-acceptance and physical health, were identified as internal sources of resilience. External sources of resilience can be found within the social network and daily activities. CONCLUSION: The current overview shows promising results to address resilience in adults with intellectual disability. More research is needed to identify the full range of resiliency factors.

Effects of music interventions on stress-related outcomes: a systematic review and two meta-analyses.

Music interventions are used for stress reduction in a variety of settings because of the positive effects of music listening on both physiological arousal (e.g., heart rate, blood pressure, and hormonal levels) and psychological stress experiences (e.g., restlessness, anxiety, and nervousness). To summarize the growing body of empirical research, two multilevel meta-analyses of 104 RCTs, containing 327 effect sizes and 9,617 participants, were performed to assess the strength of the effects of music interventions on both physiological and psychological stress-related outcomes, and to test the potential moderators of the intervention effects. Results showed that music interventions had an overall significant effect on stress reduction in both physiological (d = .380) and psychological (d = .545) outcomes. Further, moderator analyses showed that the type of outcome assessment moderated the effects of music interventions on stress-related outcomes. Larger effects were found on heart rate (d = .456), compared to blood pressure (d = .343) and hormone levels (d = .349). Implications for stress-reducing music interventions are discussed.

Brief report: Follow-up outcomes of multisystemic therapy for adolescents with an intellectual disability and the relation with parental intellectual disability.

Research on follow-up outcomes of systemic interventions for family members with an intellectual disability is scarce. In this study, short-term and long-term follow-up outcomes of multisystemic therapy for adolescents with antisocial or delinquent behaviour and an intellectual disability (MST-ID) are reported. In addition, the role of parental intellectual disability was examined. Outcomes of 55 families who had received MST-ID were assessed at the end of treatment and at 6-month, 12-month and 18-month follow-up. Parental intellectual disability was used as a predictor of treatment outcomes. Missing data were handled using multiple imputation. Rule-breaking behaviour of adolescents declined during treatment and stabilized until 18 months post-treatment. The presence or absence of parental intellectual disability did not predict treatment outcomes. This study was the first to report long-term outcomes of MST-ID. The intervention achieved similar results in families with and without parents with an intellectual disability.

Participatory Peer Research in the Treatment of Young Adults With Mild Intellectual Disabilities and Severe Behavioral Problems.

This study provides an illustration of a research design complementary to randomized controlled trial to evaluate program effects, namely, participatory peer research (PPR). The PPR described in current study was carried out in a small sample (N = 10) of young adults with mild intellectual disabilities (MID) and severe behavioral problems. During the PPR intervention, control and feedback to individuals is restored by training them to become participant-researchers, who collaborate in a small group of people with MID. Their research is aimed at the problems the young adults perceive and/or specific subjects of their interest. The study was designed as a multiple case study with an experimental and comparison group. Questionnaires and a semistructured interview were administered before and after the PPR project. Results of Reliable Change Index (RCI) analyses showed a decrease in self-serving cognitive distortions in the PPR group, but not in the comparison group. These results indicate that PPR helps to compensate for a lack of adequate feedback and control, and in turn may decrease distorted thinking and thereby possibly later challenging behavior.

Evaluating the effects of multisystemic therapy for adolescents with intellectual disabilities and antisocial or delinquent behaviour and their parents.

BACKGROUND: An adaptation of multisystemic therapy (MST) was piloted to find out whether it would yield better outcomes than standard MST in families where the adolescent not only shows antisocial or delinquent behaviour, but also has an intellectual disability. METHOD: To establish the comparative effectiveness of MST-ID (n = 55) versus standard MST (n = 73), treatment outcomes were compared at the end of treatment and at 6-month follow-up. Pre-treatment differences were controlled for using the propensity score method. RESULTS: Multisystemic therapy-ID resulted in reduced police contact and reduced rule breaking behaviour that lasted up to 6 months post-treatment. Compared to standard MST, MST-ID more frequently resulted in improvements in parenting skills, family relations, social support, involvement with pro-social peers and sustained positive behavioural changes. At follow-up, more adolescents who had received MST-ID were still living at home. CONCLUSIONS: These results support further development of and research into the MST-ID adaptation.

Adverse Childhood Experiences in Children with Intellectual Disabilities: An Exploratory Case-File Study in Dutch Residential Care.

Adverse Childhood Experiences (ACEs) are negative childhood events occurring in a child's family or social environment, that may cause harm or distress. Children with intellectual disabilities (ID) and their families are underrepresented in international ACEs research, while current insights can also contribute to the improvement of their health and well-being. Deficiencies in intellectual and adaptive functioning and living circumstances can increase their vulnerability to adversities. In the present exploratory study 69 case-files of children referred to a Dutch national center for residential youth care for children with ID were analyzed to assess the prevalence and associations of ACEs. It was found that almost half (49.3%) of the children experienced 2 ACEs from the original ACEs framework or more (M (mean) = 2.1; SD (standard deviation) = 1.8) and that the number of ACEs in children was related to the presence of ACEs in parents. Both child and parental ACEs were also related to attachment- and trauma- and stressor-related disorders. Finally, living circumstances and multiple ACEs from the expanded ACEs framework, especially related to parental characteristics, were found to be related to ACEs in children with ID. This implicates the importance of a transgenerational approach when further investigating the impact of ACEs on mental and physical health in children with ID (intellectual disabilities).

Development and Testing of a Screener for Intelligence and Learning Disabilities (SCIL).

BACKGROUND: Many clients in contact with social services and (mental) health care have mild to borderline intellectual disabilities (MBID). Yet, administering a full intelligence test may not be feasible. METHOD: In 318 adults and 305 juveniles, the scores on 14 questions that comprise the screener for intelligence and learning disabilities (SCIL) were analysed in relation to the IQs of the participants. RESULTS: The SCIL score had good predictive validity for detecting MBID in adults (AUC = 0.93). A cut-off score of 19 or lower is recommended to detect (a suspicion of) MBID. Test-retest reliability of the SCIL was 0.92. In juveniles, AUC values were 0.91 for 16- to 17-year-olds, 0.90 for 14- to 15-year-olds and 0.83 for 12- to 13-year-olds. CONCLUSIONS: The SCIL appears to be a time-efficient tool for screening for MBID in adults (18+) and juveniles of 14 years or older.

Photovoice in research involving people with intellectual disabilities: A guided photovoice approach as an alternative.

BACKGROUND: In studies involving people with intellectual disabilities, photovoice is increasingly used to include the voice of participants. Analysing existing literature, the present authors found that photovoice was used in various forms with different outcomes. These studies describe both obstructing and facilitating factors. The present authors designed a more standardized approach of photovoice and developed an alternative strategy: "guided photovoice." METHOD: The "guided photovoice" approach was tested on fourteen participants with intellectual disabilities. The outcomes of the approach were evaluated. RESULTS: The effectiveness of the approach varied with the participants' capabilities and needs. Some participants were talked more while taking photographs, others told their story easily during the interviews. The use of follow-up questions was helpful to deepen the interview. CONCLUSIONS: A more standardized, guided photovoice approach is a helpful addition to the various options for using photovoice; it is important to decide which approach best fits the needs and capabilities of the participants.