Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability

The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author’s own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author’s design have been used in the research. Likert-type scale “Perspective of intellectual disability” has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author’s own design have been used: a Likert-type scale “The essence of sexuality in persons with an intellectual disability” which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.     

Informal caregivers of people with an intellectual disability in England: health,quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well‐being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population‐representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio‐demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar‐sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well‐being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.     

Self‐reported care needs of Dutch homeless people with and without a suspected intellectual disability: a 1.5‐year follow‐up study

Cognitive impairment is a prevalent problem among the homeless and seems related to more psychosocial problems. However, little is known about the care needs of the subgroup of homeless people with an intellectual disability compared to those without an intellectual disability and how their care needs develop over time. This study explores self‐reported care needs within a broad range of life domains among Dutch homeless people with and without a suspected intellectual disability to gain insight into the transition of self‐reported care needs from baseline to follow‐up in both subgroups. This longitudinal study is part of a cohort study among homeless people who had been accepted for an individual programme plan in four major Dutch cities. The initial cohort consisted of 513 participants who were interviewed in 2011. At 1.5‐year follow‐up, 336 participants (65.5%) were also interviewed and screened for intellectual disability. Of these participants, 31% (95% CI 26.2–36.1) had a suspected intellectual disability. For both groups, between baseline and follow‐up, the number of ‘unmet care needs’ decreased significantly and the number of ‘no care needs’ increased significantly, while at follow‐up, participants with a suspected intellectual disability reported ‘no care needs’ on significantly fewer life domains than those without a suspected intellectual disability (mean numbers 16.4 vs. 17.5). Between baseline and follow‐up, ‘met care needs’ decreased significantly on housing for both groups, and increased on finances and dental care for participants with a suspected intellectual disability. At follow‐up, participants with a suspected intellectual disability more often preferred housing support available by appointment than those without a suspected intellectual disability. These findings suggest that homeless people who had been accepted for an individual programme plan with a suspected intellectual disability have care needs for a longer period of time than those without a suspected intellectual disability. Providing care to homeless people with a suspected intellectual disability might require ongoing care and support, also after exiting homelessness. Support services should take this into account when considering their care provision and planning of services.     

Attitudes Towards Affectivity and Sexuality of People with Intellectual Disability

The acceptance of sexuality and its manifestations has changed in recent decades to being considered a normal feature of the identity of each individual. However, the person with intellectual disability have not benefited from this change in attitude. Their sexuality remains shrouded in myths and prejudices. The study population consisted of 454 students from the University of Beira Interior, from the Medicine, Psychology and Architecture majors. The data was collected using a questionnaire specifically drafted for this research. Most surveyed students consider sexuality an important part of life for every human being. From the responses to the questionnaire, psychology students were those with a more positive attitude towards sexuality and affectivity of the individual with intellectual disability, but the variability of the distribution of student responses from the three majors did not differ significantly. A positive attitude is characteristic of those who have acquired sufficient knowledge, females and of those who have frequent contact with individuals with intellectual disability.     

Impediments to community‐based care for people ageing with intellectual disability in rural New South Wales

The emerging phenomenon of ageing with an intellectual disability has become subject to an increasing research focus in recent years. However, there remains little knowledge regarding the specific impediments that community workers face in supporting this cohort. The aims of the current study were to identify the major factors that, direct care staff believe, have most impact upon individuals ageing with an intellectual disability in the community. A three‐round Delphi project was conducted across rural areas of New South Wales in Australia with 31 disability support workers to gain their perspectives on the main impediments facing a person ageing with intellectual disability. The 2010 study identified that the issue of ageing with an intellectual disability was presenting significant problems for community‐based service delivery to this group of people. The panel identified 25 different impediments to the provision of support. A thematic analysis of the items indicated three main themes of ‘funding’, ‘training’ and ‘access to services’. By identifying these impediments to supporting people ageing with an intellectual disability in the community, both services and government funding bodies have the ability to plan to overcome both current and future problem areas. This identification of impediments may facilitate individuals to receive more appropriate assistance, which in turn may lead to an improved quality of life and maintenance of a community‐based placement rather than premature admission to the congregate‐care system. This study is particularly timely, given that Australia is in the midst of implementing a National Disability Insurance Scheme, and is an opportunity for all levels of government to agree on the mechanisms to appropriately assist individuals with an intellectual disability to continue to be supported in the community as they age.     

An empirical study of the sexual abuse of people with intellectual disability

This study describes a comparison between the level of sexual knowledge and experience of sexual abuse among people with intellectual disability and people without intellectual disability. The Sexual Abuse section of the Sexual Knowledge, Experience, and Needs Scale (SexKen) was completed by 30 people with intellectual disability (18 females, 12 males) and 50 control subjects (32 females, 18 males). The results demonstrated a lower level of sexual knowledge among the people with a disability but no differences between the groups in the level of incest and other unwanted sexual activities. There was a high percentage of people with intellectual disability who believed that someone else decides about the level of their sexual experience. They also expressed less negativity about sexual abuse. These findings are discussed in the context of sex education programs for people with intellectual disability.     

Sexual Knowledge,Experience and Feelings Among People with Disability

The current study was designed to evaluate the sexual knowledge, experience, feelings and needs of people with intellectual disability or physical disability, and compare them to people from the general population. Sixty people with mild intellectual disability (28 males, 32 females, mean age=27.62 years), 60 people with physical disability (33 males, 27 females, mean age=28.65 years) and 100 people from the general population (40 males, 60 females, mean age=30.10 years) participated in the study. Each respondent completed the Sexual Knowledge, Experience and Needs Scale (SexKen). This scale assesses levels of knowledge, experience, feelings and needs in 12 different areas of sexuality. The results demonstrated that people with intellectual disability experienced lower levels of sexual knowledge and experience, more negative attitudes to sex and stronger sexual needs than people with physical disability, in all areas of sexuality. People with physical disability demonstrated these same trends when they were compared to people from the general population. An interpretation of these results as they relate to the sexuality of people with intellectual or physical disability is provided.     

The views of carers about support for their family member with an intellectual disability: With a focus on positive behavioural approaches

This qualitative study explored the views of family carers about the support that their adult children with an intellectual disability had received in relation to their behaviour that challenged. There was a particular focus on positive behavioural support (PBS), although some participants spoke more generally in terms of positive approaches. Semi‐structured interviews with eight family carers were analysed using inductive thematic analysis. Four key themes were identified. Good support, of which PBS was an example, was seen as both having reduced behaviours that challenged and having a wider positive impact on the quality of life of the individual and their families. Key features highlighted were: technical knowledge and skill; a strong value base of warmth, acceptance and respect; a collaborative, consistent approach; open communication; and the extension of support to the family carer when needed. It was recognised that there is a need for broad systemic change and for the application of a workforce development model that takes account of the needs of staff, carers and those working in wider systems that have contact with people with an intellectual disability.     

A Desire for Love: Considerations on Sexuality and Sexual Education of People With Intellectual Disability in Poland

This article is intended to attract public attention to the fact that people with intellectual disability, despite their delayed sexual development, still remain sexual beings, which is connected with many individual and social consequences. The empirical data collected in this work provides knowledge about biological and psychological conditioning of sexual development of individuals with intellectual disability. However, the problem of sexuality for this population should be further analyzed. One should also think about the possibility of supporting the psychological and sexual development of people with more severe intellectual disability.     

Effects of occupational therapy intervention on activities of daily living and awareness of disability in persons with intellectual disabilities

Aim:  The purpose of this study was to evaluate the effects of an occupational therapy intervention program on activities of daily living (ADL) ability and awareness of disability.
Methods:  Six persons with intellectual disabilities participated in the study, which was based on a single-case design. Assessment of Motor and Process Skills and Assessment of Awareness of Disability were used as evaluation tools.
Results:  Activities of daily living performance improved in five of the six participants after implementation of the program, with improvement across both motor and process skills. However, no clear improvement in awareness of disability was found following implementation of the program.
Conclusion:  It may be concluded from this study that persons with intellectual disabilities can benefit from occupational therapy interventions to improve ADL ability, even in the absence of any change in their awareness of disability.     

Prevalence of autism spectrum disorder among Nigerian children with intellectual disability: a stopgap assessment

The prevalence of autism spectrum disorder (ASD) among sub-Saharan African children with intellectual disability is about 0.7% more than three decades ago. During this period, the prevalence of ASD has been on the increase worldwide. Studies are not available in recent times addressing epidemiology of ASD among sub-Saharan African children. The present study assessed the prevalence of ASD among Nigerian children with intellectual disability. Forty four children with intellectual disability were assessed for diagnosis of childhood autism based on criteria specified in F84.0 section of International Classification of Diseases, Tenth Edition (ICD-10) Diagnostic Criteria for Research. Five (11.4%) of the children studied met the diagnostic criteria for childhood autism. Male/female ratio was 4:1. There is need for large scale epidemiological studies of ASD among sub-Saharan African children to clearly define the inter-relationship between ASD and intellectual disability in this population and to help in health care policy formulation.     

Activities of daily living in persons with intellectual disability: Strengths and limitations in specific motor and process skills

As there is a wide range of abilities among clients with intellectual disability, occupational therapists should use assessments of activities of daily living that specify clients' strengths and limitations to guide and target interventions. The aim of the present study was to examine if activities of daily living performance skills differ between adults with mild and moderate intellectual disability. Three hundred and forty-eight participants with either mild intellectual disability ( n  = 178) or moderate intellectual disability ( n  = 170) were assessed using the Assessment of Motor and Process Skills to examine the quality of their activities of daily living skills. The overall activities of daily living motor and activities of daily living process hierarchies of skill item difficulties remained stable between groups. Although participants with moderate intellectual disability had more difficulty overall with activities of daily living motor and activities of daily living process skills, they were able to carry out some of these activities equally as well as participants with mild intellectual disability. The findings are discussed in relation to the planning of specific interventions to improve the ability of clients with intellectual disability to carry out activities of daily living.     

Occupational therapy and people with intellectual disability from culturally diverse backgrounds

The multicultural nature of Australian society creates a need for occupational therapists to become aware of the issues facing people from culturally diverse backgrounds. People with intellectual disability from culturally diverse backgrounds may experience a 'double disadvantage' due to issues of their culture and their disability. This research aimed to identify the experiences, issues and strategies used by occupational therapists working with people with intellectual disability from culturally diverse backgrounds. A semistructured group interview and three individual interviews were conducted with occupational therapists from both metropolitan and rural locations in Queensland. It was found that communication and residential services present some unique issues for people with intellectual disability from culturally diverse backgrounds. Strategies suggested by therapists to address a range of issues are listed. Implications for occupational therapy are discussed, and suggestions for future research are provided.     

Parents' experiences in assisting a person with an intellectual disability to achieve optimal dental health

This qualitative study explored the experiences and perceptions of parents in relation to dental care for their son or daughter with an intellectual disability. Six parents were interviewed, each of whom had a school-aged child with an intellectual disability. Themes which emerged include the use of coping strategies and adaptations by parents in assisting with dental care, the priority placed on dental care, trauma in dealing with dental issues, differences in expectations and outcomes for people with a disability compared with non-disabled siblings, and parents' views on dental services. While parents reported satisfaction with current dental services, it was apparent that their expectations may not have been as high for their child with a disability as for their other children. Possible reasons for this are discussed. Areas for further research are suggested.     

Inadequacies in the treatment of visual impairment in people with an intellectual disability--who is responsible?

A recent retrospective study established that in clients with intellectual disabilities visiting a low vision centre, treatment advice for refractive errors and cataract had not been given in many cases, especially in patients with severe learning disabilities, and that the advice given was not always realised. Due to the retrospective nature of the study design, the reasons for this and the role of the different involved parties could no longer be ascertained. However, the risk of visual impairment and blindness in this specific population is known to be ten-times higher than for the population in general. This gives rise to effects on daily functioning over and above the functional effects of intellectual disability. As refractive errors and cataract are major treatable causes of visual impairment and blindness in this group, optimal treatment should have a high priority. Recent research by our group reveals that implementation of treatment advice by intellectual disability service providers is poor. Important causes are a lack of specific expertise and time under professional carers, management giving insufficient priority to sensory impairments resulting in lack ofsupport, and a lack of pressure by controlling bodies. Furthermore, intellectual disability physicians and general practitioners should far more actively advocate the importance of treatment and effectuate ophthalmologic referral. A practical ophthalmologic guideline for cataract surgery in this population may facilitate a harmonisation of the indications for surgery.     

Demographischer Wandel und Anforderungen an das Gesundheitswesen Stellungnahme anlässlich der Anhörung durch die Enquete-Kommission “Demographischer Wandel” des Deutschen Bundestages zum Thema “Reformbedarf des Gesundheitswesens” am 22. Januar 2001 in Berlin

The Federal Statistical Office is forecasting an increase of individual life expectancy for Germans, paralleled by a decrease of the proportion of young people in the population. The question arises, whether this development will increase the strain on the German Health system in a way that cannot be financed in the future. This memorandum tries to answer this question solely on the basis of existing health data. It is stated that an extended life span is not necessarily associated with a longer time period of illness and disability. There are indications that the increasing ageing of the population does not lead to a proportional rise in expenditure in health care for the elderly. The increase of the proportion of elderly people does not only reflect improved life expectancy as a consequence of cultural, medical and social developments. Instead, reduction of birth rates will significantly impose constraints of the Health System, the extend of which cannot at present be estimated due to the scarcity of evidence based knowledge.     

Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial

BACKGROUND: People with intellectual disability constitute approximately 2% of the population. They die prematurely, and often have a number of unrecognized or poorly managed medical conditions as well as inadequate health promotion and disease prevention. METHODS: A cluster randomized controlled trial with matched pairs was carried out. The participants were adults with intellectual disability (n = 453 in 34 clusters). The intervention was a health assessment programme to enhance interactions between the adult with intellectual disability, their carer and their general practitioner (GP). It prompted the systematic gathering of a health history and, subsequently, access to a GP for a guided health review and development of a health action plan. It also provided information about the health of adults with intellectual disability. Follow-up was for 1 year post intervention, with outcomes extracted from GPs' clinical records. RESULTS: Increased health promotion, disease prevention and case-finding activity was found in the intervention group. Compared with the control group there was a 6.6-fold increase in detection of vision impairment (95% confidence interval 1.9-40); a 30-fold increase in hearing testing (4.0-230); an increase in immunization updates [tetanus/diphtheria a 9-fold increase (4.2-19)], and improvements in women's health screening [Papanicolau smears were eight times more common (1.8-35)]. The intervention increased detection of new disease by 1.6 times (0.9-2.8). CONCLUSIONS: The Comprehensive Health Assessment Program (CHAP) produced a substantial increase in GPs' attention to the health needs of adults with intellectual disability with concomitantly more disease detection. The presumption that these will yield longer-term health benefits, while suggestive, remains unexamined.     

Discourse of needs versus discourse of rights: family caregivers responding to the sexuality of young South African adults with intellectual disability

Although most people with intellectual disability remain under the lifelong care and support of their families, there is a hiatus in research that explores the sexuality of people with intellectual disability within the family setting. Little is known about how the responses of family caregivers align with a human rights approach to the sexuality of people with intellectual disability, particularly in the South African context. This study used a constructivist grounded theory approach to explore how 25 South African family caregivers responded to the sexuality of their young adults with intellectual disability. Findings revealed that family caregivers prioritise what they deem as being the immediate needs of themselves and the young adults, over the young adults’ rights to sexual autonomy. Practitioners, guided by the human rights approach, need to understand the individual and family context so as to better collaborate with family caregivers in supporting people with intellectual disability to realise their sexual rights. We apply two theories of needs to illuminate the conflict between needs-centred ethics and human rights approaches in a context where the family caregivers are the ones determining the sexuality needs of young adults with intellectual disability.     

A systematic review of interventions to promote social support and parenting skills in parents with an intellectual disability

The family support needs of parents with an intellectual disability (ID) are relatively unknown. This paper reviewed two types of intervention for parents with ID: those designed to strengthen social relationships and those teaching parenting skills. A literature search was conducted using electronic databases and a limited number of evaluative studies were found. The evidence for interventions aimed at strengthening social relationships was inconclusive; although positive changes were observed, there were limitations in study design which restricted the generalizability of the results. The evidence for parental skills teaching suggested that behavioural based interventions are more effective than less intensive forms such as lesson booklets and the provision of normal services, although these studies also had limitations. There is a need for further large scale controlled studies in this area to provide clearer evidence and to explore additional factors relating to child, parent and family which may impact on outcomes.