RESUMO
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.
RESUMO
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.
RESUMO
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.