Comparison of attitudes to the sexual health of men and women with intellectual disability among parents,professionals, and university students

Background This study investigates whether parents, professionals, and university students have different sexual attitudes towards men versus women with intellectual disability (ID) and which factors are related to such attitudes among these three groups.

Method A self-administered survey using the ASQ-ID questionnaire was implemented, and 130 parents, 173 professionals, and 645 university students completed it.

Results University students showed more positive attitudes than parents and professionals. Parents were more likely to have a positive perception of men with ID than of women with ID with regard to “parenting.” Whether they were parents, professionals, or university students was not correlated with their attitudes; instead, their attitudes were associated with participants' age, education, and religion.

Conclusions Awareness of sexual rights related to people with ID, especially women with ID, needs to be discussed among parents and professionals, particularly those in old age, with a low level of education, and those who follow the Buddhist religion.     

Ageing in people with intellectual disability as it is understood by group home staff

Background The number of older residents in group homes for people with intellectual disability (ID) is increasing. This interview study was focused on how group home staff address issues of ageing and being old among people with ID.

Method Twelve members of staff at 4 different group homes in Sweden were interviewed.

Results Findings revealed old age as something unarticulated in the group home. Group home staff felt unprepared to meet age-related changes in residents. The study also revealed that group home staff had a one-tracked way of describing the process of ageing among people with ID, which was seemingly rooted in a medical paradigm of disability.

Conclusion Based on this study's findings, we suggest that there is a need to raise issues and give guidance related to ageing and ID in disability policy documents to support the development of a formal culture that addresses old age and ID in disability services.     

The experiences of parents in supporting their son or daughter with intellectual disability to learn about dying and death

Background People with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual disability about dying and death.

Method Four participants were interviewed about how they discussed dying and death with their son or daughter with intellectual disability. Thematic analysis was used to interpret the findings.

Results Parents did more than talk to their son or daughter about death; they involved them in dying and death experiences. Parents’ motivations influenced the way they included their son or daughter in these experiences.

Conclusions The parents played an important role in providing learning experiences for their son or daughter with intellectual disability about dying and death.     

Self-reported substance use and intervention experience of prisoners with intellectual disability

Background It has been increasingly recognised that many offenders with intellectual disability (ID) have substance use issues, yet surprisingly little is known about the treatment needs of this population.

Method In order to explore pre-sentence patterns of substance use, the role of substance use in offending behaviour, and experience with substance treatment programs, interviews were conducted with 33 sentenced prisoners.

Results The findings of this study identified hazardous and harmful rates of alcohol use and high rates of substance use among prisoners with ID. Most participants reported being intoxicated at the time of their offence. Participants’ experience of substance intervention programs varied. Although many reported a positive experience, others reported significant participation barriers.

Conclusions This study supports the increasingly recognised link between substance use and offending behaviour among prisoners with ID and highlights the importance of tailored and coordinated treatment initiatives, both within corrections facilities and the community.     

A cross-sectional analysis of developmental trajectories of vocabulary comprehension among children and adolescents with Down syndrome or intellectual disability of undifferentiated aetiology

Background In this work we sought to expand our knowledge of developmental trajectories of subcomponents of the language systems of individuals with intellectual disability (ID). We aimed to explore how general and relational vocabularies evolve as a function of cognitive level.

Method Developmental trajectories of general and relational vocabulary comprehension were compared among typically developing (TD) children and children and adolescents with ID of undifferentiated aetiology (UND) or Down syndrome (DS).

Results Comparisons between TD participants and participants with UND showed no interaction between cognitive level and diagnostic status for general vocabulary, and only a very weak interaction for relational vocabulary. Comparisons between TD participants and participants with DS failed to reveal group-specific trajectories. Performance in general vocabulary was higher than in relational vocabulary for participants with UND and DS.

Conclusion The developmental trajectories of vocabulary appear to be globally comparable for participants with or without ID.     

Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: A German-language version feasibility study

Background In this study, we evaluated the feasibility of using the German-language version of a recently developed screening tool for dementia for persons with intellectual disability (ID): the National Task Group – Early Detection Screen for Dementia (NTG-EDSD).

Method Some 221 paid carers of ageing persons with ID were asked to use the NTG-EDSD and report back on its utility and on 4 feasibility dimensions, and to provide detailed feedback on aspects deemed critical or missing.

Results All feasibility dimensions were rated good to very good, and 80% of respondents found the NTG-EDSD useful or very useful for the early detection of dementia. This highlights a high acceptability of this instrument by the main target group.

Conclusions The positive feasibility evaluation of the NTG-EDSD indicates the usability and adequacy of this instrument for application of early detection of dementia in persons with ID.     

Who provides primary health care for people with an intellectual disability: General practitioner and general practice characteristics from the BEACH dataset

Background People with an intellectual disability (ID) have complex healthcare needs yet experience barriers to participation in primary care. Further research is required to examine if the characteristics of general practitioners (GPs) and their practices influence their delivery of care to people with ID.

Methods Data from the Bettering the Evaluation and Care of Health program was used to determine if there are significant differences in the ID-GP and Non ID-GP group. Analysis included characteristic-specific rates, chi-square, and odds ratios.

Results This study found that GPs who were Australian medical graduates, practising in rural areas, in accredited practices, and in some states of Australia were significantly more likely to be classified to the ID-GP than the Non ID-GP group.

Conclusions This research suggests that certain GP and practice characteristics may present barriers to primary care participation for people with ID and supports the need for a comprehensive national action framework.     

The prevalence of intellectual disability among 1-year cohorts of Finnish elderly as determined with the multiple register method

Background Longevity is increasing among persons with intellectual disability (ID) simultaneously with that of the general population. There is a need to update prevalence figures of ID among the elderly. The aim of this study was to estimate the prevalence of ID among the elderly in Finland.

Method We combined data from 8 national health and social benefits registers to calculate the ID prevalence for age cohorts separated by 1-year intervals. We corrected a discontinuity due to loss of diagnostic information in the main registers at retirement age (65 years) by comparing the age distribution to that of the entire population.

Results The distribution correction more than doubled the number of persons with ID in this age group, resulting in an apparent prevalence of 0.75%.

Conclusions The 1-year interval between age cohorts proved useful in detecting discontinuities and permitted estimation. The new estimate for the prevalence of ID among the elderly is higher than those previously published, but congruent with the increasing life expectancy of elderly persons with ID.     

The feasibility of psychomotor therapy in acute mental health services for adults with intellectual disability

Background Psychomotor therapy enables people to reflect on the relationship between experiences and feelings by starting from awareness of bodily responses rather than from awareness of emotion. In this study we examine PsyMot (ID), an assessment that directs this psychological therapy.

Method Twelve suitable consecutive admissions were recruited from a specialist intellectual disability (ID) assessment and treatment unit for adults. Video-recordings of PsyMot (ID) allowed assessment of interrater reliability (IRR). Treatment goals indicated by PsyMot (ID) were addressed using psychomotor therapy as part of a comprehensive program of interventions.

Results Psychomotor therapy was both feasible and popular with patients who participated without any adverse effects. Nine patients completed PsyMot (ID). IRR of the treatment goals identified by all 3 raters was good to excellent in 81% cases, but there were discrepancies for individual items.

Conclusions PsyMot (ID) and psychomotor therapy is feasible within this context, and enriched the clinical team's formulation. Further studies of reliability and efficacy should be undertaken.     

Adaptation in families raising children with fetal alcohol spectrum disorder. Part I: What has helped

Background There is limited research investigating the lived experiences of parents raising children with fetal alcohol spectrum disorder (FASD). The aim of this paper is to use qualitative analysis to identify how parents have adapted to the experience of raising their child with FASD.

Method Eighty-four parents and caregivers of children with FASD in Ontario, Canada, participated in in-depth, semistructured interviews employing a basic interpretive approach.

Results Parents of children with FASD report a number of strategies, supports, and transformational outcomes. Using interpretative phenomenological analysis, 5 themes were identified: understanding FASD and advocating on their child's behalf, day-to-day adaptation, transformational outcomes, as well as the importance of informal and formal supports.

Conclusions Understanding what families do in order to facilitate adaptation is important when assisting families who may not be adapting as successfully. Continued research looking at the family experience of raising a child with a developmental disability, such as FASD, is necessary.     

Positive aspects of coping among mothers of adolescent children with developmental disability in the Druze community in Israel

Background The purpose of this study was to compare perceptions of coping as experienced by 240 mothers of adolescents with and without developmental disability in the Druze community in Israel.

Method The mothers completed the Sociodemographic Questionnaire, Grandparents Functional Support Assessment, Family Adaptability and Cohesion Evaluation Scales, and the Posttraumatic Growth Inventory.

Results Both groups were found to be similar in their perception of family cohesion and emotional support. However, mothers of adolescents with a developmental disability reported higher rates of both adaptability to change and personal growth. Moreover, associations were found between family cohesion and adaptability to change and support, and between adaptability to change and social support and personal growth.

Conclusion Druze mothers of adolescents with developmental disability reveal important information regarding positive coping strategies.     

Young adults with severe intellectual disability: Culture,parent, and sibling impact

Background Having a child with intellectual disability impacts all family members, with both parents and siblings having to adjust. Negative impact on the typically developing sibling, specifically, has been shown to vary based on caregiving responsibilities and mothers’ stress level.

Method This study gathered information from 238 Latina and Anglo mothers of young adults with intellectual disability to explore sibling negative impact related to maternal stress, positive feelings about parenting, sibling diagnostic category, and cultural group.

Results Mothers experiencing more stress reported higher levels of sibling impact; mothers with more positive feelings about parenting reported lower levels of negative impact, with Latina mothers reporting higher levels of stress and positive feelings about parenting. Anglo mothers, however, were less likely to designate a sibling as a future caregiver.

Conclusions These findings suggest culture and diagnostic classification should be given more attention relative to their impact on typically developing siblings.     

Perceptions and expectations of regular support meetings between staff and people with an intellectual disability

Background Client-centred models of care emphasise the importance of collaborative working between staff and clients with an intellectual disability (ID). How people with an ID perceive the nature of their engagement with staff is relatively unknown. This study investigated the perceptions of staff and people with an ID about the goals for their meetings and what aspects of the meetings they viewed as important.

Method Interviews were carried out with 9 client–staff dyads. Prior to their meeting, staff and clients were asked about their expectations. Afterwards, both parties were asked about what they believed happened during the interaction. The participants’ answers were subjected to a thematic analysis.

Results People with an ID appreciated the opportunity to tell their story and valued reliable, practical support and advice. A trusting relationship was important to both clients and staff. Only staff viewed promoting clients’ autonomy as important.

Conclusion Staff and people with an ID appear to differ in their expectations and perceptions regarding regular support meetings.     

Parental report on socio-communicative behaviours in children with 22q11.2 deletion syndrome

Background Children with 22q11.2 deletion syndrome (22q11.2DS) are reported to have socio-communicative impairments. Although many of these children are diagnosed with intellectual disability (ID) and/or autism spectrum disorder (ASD), these populations are seldom used as control groups. Hence, information regarding syndrome-specific socio-communicative challenges is lacking.

Method Parental concerns regarding everyday communication were investigated by means of the Children’s Communication Checklist-2-NL (Geurts, 2007). Twenty children with 22q11.2DS (chronological age: 6 years–13 years 3 months) were compared to 21 children with idiopathic ID and 23 children with idiopathic ID and comorbid ASD. All groups were matched for fluid intelligence (Gf), chronological age, and core language scores.

Results Neglect or inadequate use of context information was more prevalent in children with 22q11.2DS than in children with idiopathic ID. Nonverbal communication seemed less impaired than in children with idiopathic ID + ASD.

Conclusion Pragmatic language skills and developmental trajectories in children with 22q11.2DS merit further investigation.     

Clinicians’ use of sexual knowledge assessment tools for people with intellectual disability

Background Many people with intellectual disability have limited sexual knowledge. Several assessment tools have been developed to assess the sexual knowledge of people with intellectual disability. This paper examines how clinicians’ are using these tools.

Method This research uses a constructivist grounded theory approach. Semistructured qualitative interviews were conducted with clinicians who use sexual knowledge assessment tools.

Findings and Discussion Assessment of sexual knowledge is not routine in disability service provision. Sexual knowledge is typically only assessed when there has been an incident of problematic sexualised behaviour. This reactive approach perpetuates a pathological sexual health discourse.

Conclusions Clinicians using assessment tools said that they need the tools to support work they do in relation to sexual health of people with intellectual disability. However, they also reported that the tools have gaps and are not fully meeting their needs or the needs of people with intellectual disability.     

Development and pilot testing of a tool to calculate parental and societal costs of raising a child with intellectual disability

Background There is a lack of evidence in Canada surrounding the costs to parents and society to raise a child with intellectual disability. Knowledge of these costs is necessary to ensure appropriate governmental support to families and to assess the financial impact of new diagnostic tests and treatments.

Method We adapted 2 paper-based cost diaries into an online retrospective survey and evaluated it using a small pilot study of individuals with Down syndrome.

Results Parents completed the survey with apparent ease, giving answers requiring little clarification; they used comment fields to add data that elaborated on both financial and emotional costs. Costs appeared concordant with those reported in other countries.

Conclusion The survey successfully documents care time required, impact on employment, and other expenses. Minor modifications were made as a result of this pilot, and the survey is now available for wider use.     

Screening for intellectual disabilities: a validation of the Hayes Ability Screening Index for in-patients with substance use disorder

Background: There is a reason to believe that many individuals with substance use disorder (SUD) in contact with services have an undiagnosed intellectual disability (ID). Assessing ID in persons with SUD can be challenging due to the influence of substances, time consumption, and specific requirements for the education of the assessor. On the other hand, an undiagnosed condition may lead to a lack of treatment adjustment and may result in drop-out from treatment or lack of treatment effect. There is a need for a time-saving, valid instrument to detect possible ID among people with SUD.

Aims: To validate the Hayes Ability Screening Index (HASI) as a screening instrument for identifying ID in a population of in-patients with SUD using all three ICD-10/DSM5 criteria in classifying ID as the validation criterion.

Methods: Eighty-four SUD in-patients aged 19–64 participated in this multicenter study. An ID was diagnosed according to the ICD-10 using WAIS-IV, Vineland II, and self-reported childhood learning difficulties.

Results: HASI correlated well with both the WAIS-IV and Vineland II. At the recommended cut-off score, the HASI had a sensitivity of 100% and a specificity of 65.4%. A large number of the false positives had IQ or both IQ and adaptive scores in the borderline range.

Conclusions: The HASI has good convergent, discriminant, and overall construct validity in detecting ID in in-patients with SUD.     

Contextual factors influencing the developmental characteristics of young children with severe to profound intellectual disability: A critical review

Background In typical development, primarily contextual factors at the family level are clearly associated with child developmental outcomes. In contrast, knowledge about the contextual factors influencing the developmental characteristics of children (0–12 years) with severe to profound intellectual disability is scarce.

Method Through computerised searches of 4 bibliographic databases, 54 studies were identified.

Results The included studies were characterised by the use of small study populations and nonvalidated research instruments, as well as by strong research designs and detailed reporting of individual results. The majority of the studies evaluated procedures based on behaviourist learning theory, mostly aimed at reducing nonadaptive behaviour or stimulating choice behaviour. The studied factors proved to be generally effective.

Conclusions Family and parenting factors are one of the most striking gaps in the current literature about the development of children with intellectual disability. Also, further research on long-term developmental changes and bidirectional influences is necessary.     

The use of social media and people with intellectual disability: A systematic review and thematic analysis

Background In this paper we present a systematic review of the evidence on the use of social media by people with intellectual disability.

Method Ten primary studies published in the English language between January 2000 and June 2014 were identified from electronic database searches (CINAHL, PsychInfo, PubMed, Web of Knowledge, and Scopus), correspondence with experts, and citation tracking.

Results Nine themes were identified through thematic analysis of the texts: “safety and safeguarding,” “social identity,” “level of usage,” “support,” “relationships,” “happiness and enjoyment,” “communication and literacy skills,” “cyber-language and cyber-etiquette,” and “accessibility/design”.

Conclusion Examination of these themes revealed that some people with intellectual disability are having positive experiences using social media in terms of friendships, development of social identity and self-esteem, and enjoyment. However, barriers that stop people with intellectual disability from successfully accessing social media were identified as being safeguarding concerns, difficulties caused by literacy and communication skills, cyber-language, cyber-etiquette, and accessibility (including lack of appropriate equipment).     

Examining relationships between staff attributions of soundscapes and core affect in people with severe or profound intellectual and visual disabilities

Background People with profound intellectual disability experience a high prevalence of visual disability, making them more dependent on sound. However, research addressing the influence of the auditory environment is scarce.

Method Observations of the auditory environments (soundscapes) and moods of people with profound intellectual and visual disabilities, in terms of core affect, were conducted in residential facilities by direct support personnel. Appraisals of soundscape and core affect dimensions were combined and analysed by means of multilevel linear regression.

Results Findings endorse a positive relationship between the observed pleasantness and eventfulness of soundscapes and core affect of people with profound intellectual and visual disabilities.

Conclusion Based on the results of this study we suggest a relationship between soundscapes and moods of people with profound intellectual and visual disabilities, as judged by staff members engaged in their environments. These findings give reason to believe that improved soundscapes could ameliorate the moods of the residents.