Background: Intellectual disability (ID) is a developmental disorder that causes considerably below-average intellectual performance and adaptive behaviour. In the context of the present study, families raising a child with ID are reported to experience multiple challenges that appear not to be well documented in Pakistan. Methods and procedures: Pakistan, which was conducted in Karachi, Pakistan, followed participatory action research, in which the researcher and participants examined their existing experiences of informal social support and then created, implemented, and evaluated actions to strengthen this informal social support. A total of five families (n = 25) participated in the study. These participating families comprise parents, siblings, and significant others, i.e., aunts, uncles, and grandparents, living with the child with ID. Families with children with ID were selected through a school for children with ID who are under 12 years old. This qualitative action research was conducted in two distinct parts, i.e., a) exploratory part and b) action part. This paper presents the findings of the first exploratory part of the study. Aim: The exploratory phase aimed to explore and examine the experiences and challenges families may experience with informal social support while caring for a child with an intellectual disability in Karachi, Pakistan. Findings: Parents often sacrifice their personal needs and aspirations for their children, leading to decreased tolerance and anxiety. Lack of communication, support, and assistance from family members is another significant issue. Stigmatisation and discrimination from school, relatives, and friends can cause depression and distress. The study emphasises the need for a unified and coordinated approach to support and care. Religious beliefs, siblings, and close friends provide comfort and well-being. When parents manage to connect with similar families, they have the opportunity to express a collective commitment to caregiving. Conclusion: To strengthen the situation, families propose enhancing intimacy and competency within homes and taking action at the governmental level. Governments must provide appropriate services, such as nurses supporting families, support groups, and religious traditions, to promote acceptance and holistic development for intellectually disabled children.
Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.
Individuals with mild intellectual disabilities or borderline intellectual functioning are at increased risk to develop a substance use disorder—however, effective treatment programs adapted to this target group are scarce. This study evaluated the effectiveness of Take it Personal!+ in individuals with mild intellectual disabilities or borderline intellectual functioning and substance use disorder. Take it Personal!+ is a personalized treatment based on motivational interviewing and cognitive-behavioral therapy supported by an mHealth application. Data were collected in a nonconcurrent multiple baseline single-case experimental design across individuals with four phases (i.e., baseline, treatment, posttreatment, and follow-up). Twelve participants were randomly allocated to baseline lengths varying between 7 and 11 days. Substance use quantity was assessed during baseline, treatment, and posttreatment with a daily survey using a mobile application. Visual analysis was supported with statistical analysis of the daily surveys by calculating three effect size measures in 10 participants (two participants were excluded from this analysis due to a compliance rate below 50%). Secondary, substance use severity was assessed with standardized questionnaires at baseline, posttreatment, and follow-up and analyzed by calculating the Reliable Change Index. Based on visual analysis of the daily surveys, 10 out of 12 participants showed a decrease in mean substance use quantity from baseline to treatment and, if posttreatment data were available, to posttreatment. Statistical analysis showed an effect of Take it Personal!+ in terms of a decrease in daily substance use in 8 of 10 participants from baseline to treatment and if posttreatment data were available, also to posttreatment. In addition, data of the standardized questionnaires showed a decrease in substance use severity in 8 of 12 participants. These results support the effectiveness of Take it Personal!+ in decreasing substance use in individuals with mild intellectual disabilities or borderline intellectual functioning.
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
