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PubMedDate not supplied

Measurement of mood in adolescents with intellectual disability.

To date, there has been limited research into mood responses among adolescents with intellectual disability. One reason for this is the absence of a reliable and valid measure for the assessment of mood among this population. The present study evaluated such a measure among a sample of 135 adolescents with mild intellectual disability. Results supported the factorial validity of a 12-item derivative of the Profile of Mood States, referred to as the Intellectual Disability Mood Scale (IDMS). Convergent and divergent validity was also supported. Overall, the IDMS showed encouraging psychometric characteristics as a measure of mood among adolescents with intellectual disability. It is hoped that the results of this study will stimulate further research to expand our knowledge of mood responses among this population.

Adaptation, Psychological↗
PubMed2006

Reviewing the use of antipsychotic drugs in people with intellectual disability.

INTRODUCTION: Antipsychotics are the most widely prescribed drugs in people with intellectual disability even if schizophrenia and other psychotic disorders do not affect more than 3% of such population. Many authors outline the lack of studies on the efficacy of antipsychotics on schizophrenia or other psychotic disorders in people with intellectual disability. MATERIALS AND METHODS: The aim of the present study is to review all evidences resulting from international trials selected by Medline, and compare efficacy and side effects of different antipsychotics in people with both intellectual disability and psychotic disorders and/or behavioural disorders. RESULTS: 195 studies were identified; 117 concern traditional antipychotics while 78 new generation ones. If we consider the type of studies, it results that only the 12.8% of all production is represented by meta-analyses, systematic reviews, and randomised and not controlled trials. CONCLUSIONS: Randomised controlled trials and systematic reviews would be the golden standard for therapeutical studies; unfortunately they are really few in this field. It is anyway significative that all the studies reported focus on the use of antipsychotics in people with intellectual disability presenting behavioural problems. To increase the validity of these studies it is recommendable to proceed only with well-designed studies, possibly double-blind versus placebo or other medications. There is need to define precise inclusion criteria, precise symptomatological or behavioural targets and adaptative ability assessment, using valid and reliable diagnostic instruments.

Antipsychotic Agents↗
PubMed1999

Pain measurement in persons with intellectual disabilities.

OBJECTIVE: The goal was to study the utility of nonverbal facial expressions as a research tool for assessing pain in persons with intellectual disabilities. Biases and stereotypes related to age, gender, physical attractiveness, and intellectual disability that may influence the ability of observers to evaluate pain reactions were also examined. DESIGN: Facial reactions to an intramuscular injection of 40 adults (mean age = 49.6 years) with an intellectual disability were videotaped and objectively examined using the Facial Action Coding System. Self-reported pain ratings were obtained using a Colored Visual Analogue Scale for pain. Pain reactions were also rated by untrained observers. RESULTS: A significant proportion of participants (35%) was unable to provide valid self-report. The intensity of objectively coded facial activity as well as observer-rated pain intensity showed significant increases from baseline to injection segments. Observers' pain ratings were primarily determined by the intensity of facial activity and were not significantly affected by stereotypes based on perceived level of intellectual disability, gender, age, or physical attractiveness. CONCLUSIONS: The findings support the validity of both objectively coded and observer-rated facial expressions of pain as research tools in treatment outcome studies involving persons with intellectual disabilities. Self-report has substantial limitations for the assessment of pain in this population.

Age Factors↗
PubMed2003

Medical services for persons with intellectual disability in Israel.

BACKGROUND: The first school for children with intellectual disability (ID) was opened in Tel Aviv in 1929; the first boarding school for children with ID was established in Jerusalem in 1931; and the first center for assessment of children with ID established in Tel Aviv in 1936. With the establishment of the State of Israel in 1948, there was a total of four residential care centers providing services for 150 children with ID. OBJECTIVE: This paper will describe the history and development of the public health work with persons with intellectual disability from the birth of the State of Israel in 1948 until today, with a focus on medical and nursing care and ideas for future work with this population. DATA SOURCES: Studies and documents from the Office of the Medical Director, Division for Mental Retardation of the Ministry of Social Affairs in Israel. DATA EXTRACTION: The Division for Mental Retardation is in contact with approximately 23,000 persons of all ages. Residential care is provided to about 6,000 persons in 54 institutions countrywide. In addition, 2,000 persons receive residential care in hostels or protected apartments within the community. More than 50 other settings provide vocational and educational services to 15,000 persons--day-care kindergartens, day-treatment centers, sheltered workshops, or integrated care within the community. DATA SYNTHESIS: Data on the health profile, morbidity, and mortality of the residents in residential care centers are used to illustrate the medical and nursing work with this population. CONCLUSIONS: We recommend that the direction in Israel should be a combination of both community and institutional care for the population of persons with ID. We recommend the establishment of a subspecialty for physicians and nurses in intellectual disability and the establishment of a Health Division within the Ministry of Social Affairs to facilitate better service, education, and research.

Adolescent↗
PubMed1998

Visual behaviour and dyadic interaction between people with intellectual disability and people who are non-disabled.

Patterns of visual dominance in human interaction have been studied by a number of authors. The purpose of the present research was to investigate the implications of these studies for interaction between people who are disabled and people who are non-disabled. It was predicted that disability would differentiate the two groups, with non-disabled partners dominating the visual interaction. Two studies are reported. The first looked at visual interaction through the two looking modes of looking while listening and looking while speaking between 16 dyads where one partner was intellectually disabled and the other non-disabled. In the second study, eight subjects who were intellectually disabled and who had participated in the first study interacted with another person who had an intellectual disability. Their looking modes were then compared between conversing with a non-disabled partner in study 1 and with those of their partner with intellectual disability in study 2. The outcome of the studies showed that subjects who were intellectually disabled did not discriminate in looking mode between partners of different intellectual levels. Conversely, subjects who were non-disabled spoke and looked significantly more when conversing with their partner who was intellectually disabled. It has been argued that overlooking and overspeaking could arise from the need for the non-disabled person to gain some sign of affiliation from their partner, or alternatively, that it might reflect a dominant non-disabled person attempting to facilitate a cooperative style.

Adolescent↗
PubMed2024

Variants in HCFC1 and MN1 genes causing intellectual disability in two Pakistani families.

BACKGROUND: Intellectual disability (ID) is a neurodevelopmental condition affecting around 2% of children and young adults worldwide, characterized by deficits in intellectual functioning and adaptive behavior. Genetic factors contribute to the development of ID phenotypes, including mutations and structural changes in chromosomes. Pathogenic variants in the HCFC1 gene cause X-linked mental retardation syndrome, also known as Siderius type X-linked mental retardation. The MN1 gene is necessary for palate development, and mutations in this gene result in a genetic condition called CEBALID syndrome. METHODS: Exome sequencing was used to identify the disease-causing variants in two affected families, A and B, from various regions of Pakistan. Affected individuals in these two families presented ID, developmental delay, and behavioral abnormalities. The validation and co-segregation analysis of the filtered variant was carried out using Sanger sequencing. RESULTS: In an X-linked family A, a novel hemizygous missense variant (c.5705G > A; p.Ser1902Asn) in the HCFC1 gene (NM_005334.3) was identified, while in family B exome sequencing revealed a heterozygous nonsense variant (c.3680 G > A; p. Trp1227Ter) in exon-1 of the MN1 gene (NM_032581.4). Sanger sequencing confirmed the segregation of these variants with ID in each family. CONCLUSIONS: The investigation of two Pakistani families revealed pathogenic genetic variants in the HCFC1 and MN1 genes, which cause ID and expand the mutational spectrum of these genes.

Humans↗
PubMed2002

Menstrual and contraceptive management in women with an intellectual disability.

OBJECTIVE: To review the clinical management of young women with intellectual disabilities with menstrual and contraceptive concerns. DESIGN: Prospective cohort study of all girls and young women with a significant intellectual disability and moderate to high support needs who presented at my gynaecology clinic for management of menstrual and contraception-related issues in the period 1990-1999. SETTING: Gynaecology clinic at the Centre for Adolescent Health, Royal Children's Hospital, Melbourne, and my private consulting rooms. OUTCOME MEASURES: The clinical management options considered most appropriate for these women, including advice, reassurance, medication (oral contraceptive pill, non-steroidal anti-inflammatory drugs, depomedroxyprogesterone acetate, hormone replacement therapy) and surgical options. RESULTS: For 2 of 107 young women, surgical approaches were required to manage their menstrual problems or contraception-related issues. For the remainder of the women, information, advice or medical management were sufficient. CONCLUSIONS: Management of the menstrual and contraceptive needs of young women with an intellectual disability is similar in most cases to the management of non-disabled women. Surgical management is required infrequently.

Adolescent↗
PubMed2006

Stress and burnout amongst professional carers of people with intellectual disability: another health inequity.

PURPOSE OF REVIEW: This paper summarizes trends in the research literature about stress and burnout in the lives of people who are the professional carers of people with intellectual disability. The principal time period considered was from 2004 to 2006. RECENT FINDINGS: Studies reviewed here focus on several themes including inequities affecting professional carers of people with intellectual disability and the possible effects of some models of care on inequities. Implications for people with intellectual disability are also considered. SUMMARY: The diaspora of people with intellectual disability into the community and their accompanying services found a whole new set of unpredicted and unprecedented challenges. Life in the community has rendered professional carers of people with intellectual disability more clearly vulnerable to stress and burnout for a variety of complex reasons, some identified and others as yet unrecognized. Lack of support and lack of role definition are particular problems. Presence of physical and mental health inequities result in major disparities in community care for people with intellectual disability.

Burnout, Professional↗
PubMed1998

A five-year follow-up study of older long-stay clients with intellectual disability using the Disability Assessment Schedule.

The emphasis on community care means closure of the long-stay institutions for people with intellectual disability. Studies have indicated that older people with intellectual disability in particular may not be adequately cared for because of poor monitoring of their changing needs and inadequate provision of services. The use of rating instruments to monitor changes, and to predict outcome or needs in this population may help to improve care by assisting with planning and projection of service requirements. In 1991, all residents of a long-stay hospital for people with intellectual disability were assessed using the Disability Assessment Schedule (DAS). Five years later, the 1991 scores of the older residents (aged > 50 years) were reviewed and compared under three outcome groups: in-patients, discharged and deceased. Furthermore, all older people resident in the hospital in 1996 were reassessed using the DAS. Out of the 144 older clients resident in 1991, five years later, 78 were still in-patients, 38 had been discharged into the community and 28 were deceased. In 1991, the decreased group had the greatest problems with continence and symbolic behaviour, while the discharged group had the greatest problems with self-help, vision, hearing, communication, social interaction, echolalia and repetitive speech. In comparison with 1991, the 1996 DAS scores of older residents showed that there were increasing problems with vision, hearing, communication, behaviour and symbolic activities. The present study suggested that the DAS is a useful instrument for monitoring change and predicting outcome in older people with intellectual disability.

Activities of Daily Living↗
PubMed2002

The influence of intellectual disability on life expectancy.

BACKGROUND: To date, relatively few representative data have been available to health planners and advocacy groups on the life expectancy of people with intellectual disability. A study of trends in the survival profiles of people with intellectual disability was undertaken to assist in the planning of appropriate medical and support services. METHODS: Since 1953, the Disability Services Commission of Western Australia has maintained a database of persons diagnosed with intellectual disability. The database was used to calculate survival probabilities on a total of 8724 individuals, 7562 of whom were still alive at the time of sampling in December 2000. RESULTS: Kaplan-Meier survival plots showed a strong negative association between severity of intellectual disability and survival, with median life expectancies of 74.0, 67.6, and 58.6 years for people with mild, moderate, and severe levels of handicap. Significant negative associations also were observed with male gender, Indigenous Australian parentage, and individuals diagnosed with a specific genetic disorder. CONCLUSIONS: The findings indicate a major and expanding increase in the service requirements of this aging, intellectually disabled population during the past two generations.

Adult↗
PubMed2004

Understanding the use of breast cancer screening services by women with intellectual disabilities.

OBJECTIVES: The uptake of mammography for breast cancer screening is considerably lower among women with intellectual disability than for women in the general population. The purpose of the present study was to investigate carer perceptions of barriers and enablers to mammography use by these women. METHODS: To determine the reasons why women with intellectual disability are not utilising screening services, a series of focus groups were held with social trainers working in accommodation provided for people with intellectual disability. RESULTS: The major themes identified included the need for a medical referral or invitation from the mammography service to motivate people to attend; the belief that many women with intellectual disability would not understand the procedure or why it needs to be done and therefore would experience fear and anxiety to a greater extent than women in the general population; and that physical disabilities comorbid in many of the women would limit their ability to be adequately accommodated by the machines used to take a mammogram. CONCLUSIONS: The social trainers agreed that many of the barriers to screening would be difficult to overcome and supported alternative strategies to mammography, such as clinical breast examination.

Adult↗
PubMed1999

Treatment of adolescent sex offenders with intellectual disabilities.

The problems of male adolescent sex offenders with intellectual disabilities were described and issues for treatment reviewed. A group treatment based on cognitive therapy was offered. Treatment methods and assessment of attitudes related to commission of sexual offenses were described. Four case studies of teenage male adolescent sex offenders with intellectual disabilities were presented. All subjects responded to treatment. Their individual differences related to their responses were discussed in the context of the type of denial exhibited by each subject. At the time of this study, 3 years had elapsed for 2 subjects and 4 years for the other 2 without a recurrence of an offense.

Adolescent↗
PubMed1998

Stress and the quality of life in the parents of young people with intellectual disabilities.

This paper reports the results of a study into stress and quality of life in the parents of young people with an intellectual disability. Research in this area often finds that parents suffer stress as a result of having a son or daughter with an intellectual disability. According to Glidden (1993), this has led to the mistaken perception amongst researchers and professionals in the field that these parents are maladjusted. Glidden's work with parents adopting children with an intellectual disability suggest the parenting may be a satisfying experience and suggests a research focus based on outcomes. In this study the participants, including 102 parents of young people with (44) and without (58) an intellectual disability, were mailed a stress questionnaire and quality of life questionnaire. The results of the analysis of these data demonstrate that the families with a member with a disability report significantly greater stress, they also demonstrated that as stress increases the quality of life decreases. Governments need to address this problem if current policies of integrating people with intellectual disabilities into the community are to be successful. This paper also discusses the reasons natural parents of people with disabilities are dissatisfied while adopting parents are not and suggests further research into this important topic.

Adaptation, Psychological↗
PubMed1998

Psychoanalytic psychotherapy with men with intellectual disabilities: a preliminary outcome study.

Psychotherapy has been demonstrated to be an effective form of treatment for people with psychological problems. However, there is considerable resistance to attempts to generalize these findings to people with intellectual disabilities. Such therapeutic disdain has a long history without any empirical foundation. Recently it has been argued on philosophical grounds that people with intellectual disabilities should have access to the same services as everyone else. Furthermore, that people with intellectual disabilities should be actively targeted as they are more likely to have psychological difficulties than non-handicapped people. The therapeutic literature concerning people with intellectual disabilities is overwhelmingly behavioural. More recently various psychotherapeutic approaches have been explored as alternatives to behavioural interventions. Publication of several case studies in the late 1980s and early 1990s has provided some evidence for the benefit of various psychotherapeutic approaches with people with intellectual disabilities. However, there are no outcome studies. This paper reports an outcome study of individual psychoanalytic psychotherapy provided in normal clinical practice for 25 men with intellectual disabilities who were referred for behaviour problems. Of the 25 participants in the study, 20 completed treatment. In most cases the problem behaviour was eliminated and this was maintained at six months follow-up.

Adolescent↗
PubMed2005

Etiological survey on intellectual disability in the northern Finland birth cohort 1986.

The etiology of intellectual disability was studied both in incident (n = 9,432) and prevalent (n = 9,351) populations in a one-year birth cohort born in Northern Finland in 1985-1986. Data from multiple sources were used to follow the children until the age of 11.5 years. Of the incident cases (n=119) with intellectual disabilities, 66.4% had etiologically biomedical associative factor. Paranatal factors were relatively fewer and prenatal more common compared with earlier studies. We found nearly double the prevalence of genetic factors leading to intellectual disabilities compared with a contemporary study from Norway. The differences between the populations, despite random variation, some dissimilarities between etiological categorization and diagnostic accuracy, are in most part due to true differences between the study populations and genetic pool.

Catchment Area, Health↗
PubMed1994

Endometrial ablation: an option for the management of menstrual problems in the intellectually disabled.

OBJECTIVE: To evaluate endometrial ablation as an alternative to hysterectomy for intellectually disabled women with inadequate menstrual hygiene. DESIGN AND SETTING: A retrospective review of all intellectually impaired women referred to a menstrual management clinic at a university teaching hospital for management of inadequate menstrual hygiene between October 1989 and September 1992. RESULTS: Endometrial resection was considered an appropriate alternative to hysterectomy for eight intellectually disabled women. To date, seven women have undergone the procedure and one is receiving medical treatment. Endometrial ablation was performed with roller-ball electrocautery. Three patients underwent sterilisation at the time of surgery. The mean operating theatre time was 75 minutes. Postoperative hospital stay was less than 48 hours for all but one patient, who underwent minilaparotomy for sterilisation--postoperative analgesia was required only by this patient. There were no complications during or after surgery. Six weeks after surgery, all patients were amenorrhoeic and they and/or their carers expressed satisfaction with the procedure. Four women, followed up for between 16 and 38 months, remain amenorrhoeic and two, followed up for six months, have each experienced one episode of spotting but are otherwise amenorrhoeic. The seventh patient has had irregular bleeding but this is deemed due to erroneous continuation of progesterone therapy and is being monitored. CONCLUSION: Endometrial ablation provides a valuable alternative to hysterectomy. It should be the surgical treatment of choice for intellectually disabled women with inadequate menstrual hygiene unresponsive to medical therapy.

Adolescent↗
PubMed2001

Longitudinal study of dental caries, tooth mortality and interproximal bone loss in adults with intellectual disability.

The investigation focused on longitudinal changes of oral health in a group of adults with intellectual disability. A number of 124 individuals, aged 21-40 yr in 1990, were followed during 8.5 yr. The incidence and prevalence of caries, incidence of tooth mortality, and interproximal bone loss were registered from clinical examinations and bite-wing radiographs. The subjects visited the dental clinic for preventive dental care on average every third month during the period. The caries incidence was low, on average 0.51 new lesions per yr. Persons with mild intellectual disability experienced more caries than other subjects. During the 8.5 yr, the subjects had lost on average 1.82 teeth, with periodontitis dominating as the reason for tooth mortality. Individuals who cooperated poorly with dental treatment had lost the most teeth. The average annual bone loss in all subjects was 0.03 mm. Subjects with Down syndrome had a higher bone loss compared to those with other diagnoses of intellectual disability. Thus, the major part of the persons with intellectual disability showed satisfactory oral health. However, subjects with poor ability to cooperate with dental treatment and subjects with Down syndrome showed an increased risk for impaired oral health.

Adult↗