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1.
Subst Use Misuse ; 55(8): 1269-1279, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32176551

RESUMO

Background: Unhealthy alcohol use is a public health issue, prioritized by the World Health Organization (WHO) for prevention and reduction. Ukraine falls in the highest WHO category of "years of life lost" due to alcohol use. Objective: To investigate perceptions of alcohol consumption in a sample of youth and adults in western Ukraine. Methods: In-depth semi-structured interviews were conducted with 38 adult stakeholders (aged 21-63 years), and 81 adolescents and young adults (aged 12-21 years) completed paper-and-pencil open-ended questions. A combined deductive-inductive thematic analysis of these qualitative data resulted in an initial coding scheme for both parts of the data. These initial codes were organized into patterns, which were further condensed to four themes. Results: The four themes that were developed are: (1) The general historical, socio-economic-political situation and its relation to alcohol use, (2) Alcohol in the home and daily environment, (3) Alcohol use, related feelings, peers, family, and burden to health, and (4) Perceptions of the consequences of alcohol (mis)use. Conclusions: Respondents indicated awareness that daily consumption, also in youth, as well as binge drinking and childhood sipping constitute a risk to health. These risks were described in the context of easy availability, low pricing, and peer pressure. The respondents mentioned awareness that alcohol dependence (AD) of parents affected families with the risk of disadvantageous child development. Interventions may include targeting current norms, stigmatizing beliefs and supporting subjects in developing coping skills.


Assuntos
Consumo de Bebidas Alcoólicas , Alcoolismo , Adolescente , Criança , Humanos , Grupo Associado , Percepção , Ucrânia , Adulto Jovem
2.
J Intellect Disabil Res ; 61(12): 1117-1129, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-29024162

RESUMO

BACKGROUND: Sexual rights and sexuality are important aspects of quality of life, also for people with intellectual disabilities (IDs). However, providing support in this area to people with ID poses some challenges. In this study, the content of individual support plan (ISP) documents was analysed to determine the extent to which sexuality and sexual rights are addressed in part of the ISP documents. METHOD: Content analysis was carried out on a sample of 187 ISP documents from seven different service provider organisations in the Netherlands. First, we conducted a lexical search using terms related to sexuality and sexual health. The retrieved segments were then analysed. RESULTS: A total of 159 ISP documents (85%) of 60 men and 99 women contained some reference to aspects of sexuality. However, these references were mostly descriptive and offered little guidance in terms of providing support. Moreover, these notations mostly described negative or problematic aspects of sexuality. References to sexual education, treatment, intervention programs or support strategies were rarely found in the ISP documents. CONCLUSIONS: Although sexuality is addressed in most ISP documents, there is little information available about the provision of professional support in this area that would give people the opportunity to exert sexual rights. As sexuality and exerting sexual rights are important for people with ID as well as for other people, it is recommended that issues surrounding proactive sex education, shared decision-making and the implementation of sexual healthcare plans are addressed in the ISP.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Deficiência Intelectual , Comportamento Sexual , Saúde Sexual , Sexualidade , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
3.
J Intellect Disabil Res ; 61(3): 245-254, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-27561444

RESUMO

BACKGROUND: Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. METHODS: This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. RESULTS: The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. CONCLUSION: The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.


Assuntos
Planejamento Antecipado de Cuidados/normas , Tomada de Decisão Clínica/métodos , Deficiência Intelectual/terapia , Médicos , Ordens quanto à Conduta (Ética Médica) , Adulto , Humanos , Países Baixos , Pesquisa Qualitativa
4.
J Intellect Disabil Res ; 60(3): 254-62, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26564447

RESUMO

BACKGROUND: Goals and objectives as mentioned in Individual Support Plans (ISPs) were analysed to explore what domains of quality of life they are associated with, what support resources are referenced for achieving the goals, and how domains and resources are related to clients age, gender and intellectual disability (ID) level. METHOD: A total of 209 ISPs for persons with ID from eight residential Dutch service provider organisations were analysed. Mixed linear regression analyses were conducted to examine the relations between client characteristics and the content of goals and support resources. RESULTS: Results showed that ISPs of people with mild and moderate ID had significantly more goals related to independence and social participation as compared to the ISPs of people with severe and profound ID. ISPs of clients with profound ID addressed quality of life factors related to 'well-being' more than ISPs of all other clients. ISPs of people aged 20-34 years had significantly more goals on independence than the two other age groups. ISPs of people under the age of 50 had significantly fewer goals with respect to well-being than found in ISPs of older people. Regarding the use of resources, 42.6% of the ISP goals were associated with resources from specialised services, 31.5% associated with natural resources and 25.9% associated with a combination of both natural and specialised services. In ISPs of people with mild ID, natural resources are more often mentioned, and specialised service-based resources are less often mentioned than for other people. CONCLUSIONS: This study offers empirical feedback on ISP practices in the field of ID in the Netherlands. In light of current ISP practices, results suggest that attention should be paid to: (1) distinguishing between a 'service contract' and an ISP; (2) keeping a focus on the whole person in all age groups and levels of functioning and (3) involving the service recipient in ISP development and implementation.


Assuntos
Objetivos , Necessidades e Demandas de Serviços de Saúde , Deficiência Intelectual/psicologia , Deficiência Intelectual/reabilitação , Planejamento de Assistência ao Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Humanos , Pessoa de Meia-Idade , Países Baixos , Instituições Residenciais , Adulto Jovem
5.
J Intellect Disabil Res ; 58(4): 307-20, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-23521046

RESUMO

BACKGROUND: Solution-Focused Brief Therapy (SFBT) is a form of behaviour therapy that focuses on evoking desired behaviour rather than on diminishing existing problem behaviour. SFBT has a number of advantages that makes it attractive for use with people who have intellectual disabilities (ID). These advantages include: focus on empowerment for the person, unique intervention strategies for each person based on their particular skills, and recognition of the expert status of the individual identified as the patient resulting in a sense of self-efficacy. METHODS: To investigate the effects of SFBT, we conducted a controlled pre- and post-test and follow-up study with 20 people with mild ID (MID) receiving SFBT and 18 people with MID receiving care as usual (CAU). We expected that SFBT could help people with MID with (1) reaching treatment goals; (2) improving quality of life (i.e. psychological and social functioning); (3) reducing maladaptive behaviour; and (4) increasing resilience (autonomy and social optimism). RESULTS: Two of the 20 clients terminated SFBT prematurely. Most clients receiving SFBT (13 of 18 clients) showed clinically relevant progressions (more than two points on a 1 to 10 scale) towards their treatment goals after SFBT and at follow-up, an additional client showed clinically relevant progress (total of 14 of 18 clients). Directly after therapy, the SFBT group performed statistically significantly better than the CAU group on psychological functioning, social functioning, maladaptive behaviour, autonomy and social optimism. The effect sizes of these improvements were medium to large. At 6-week follow-up, the improvements in psychological functioning, social functioning and maladaptive behaviour in the treatment group were still statistically significant compared with CAU, with medium to large effect sizes. CONCLUSIONS: Although the study had limitations because of the short follow-up period and the non-random selection of participants, the statistically significant differences between the SFBT and CAU groups and the medium to large effect sizes, indicate the potential effectiveness of SFBT for people with MID.


Assuntos
Terapia Comportamental/métodos , Deficiência Intelectual/terapia , Psicoterapia Breve/métodos , Adulto , Seguimentos , Humanos , Pessoa de Meia-Idade , Resultado do Tratamento
6.
J Intellect Disabil Res ; 58(10): 915-25, 2014 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24528781

RESUMO

BACKGROUND: 22q11 deletion syndrome (22q11DS) is associated with mild or borderline intellectual disability (ID). There are hardly any reports on subjects with 22q11DS with moderate or severe ID, and therefore its behavioural and psychiatric characteristics are unknown. METHOD: We describe behavioural and psychiatric characteristics of 33 adults with 22q11DS and a Full-Scale IQ (FSIQ) below 55. Participants were divided into two groups: one group having a FSIQ ≤ 55 caused by intellectual decline (n = 21) and one group with a FSIQ ≤ 55 who had always functioned at this level (n = 12). RESULTS: High scores on psychopathology sub-scales were found for both subgroups. 22q11DS patients with intellectual decline showed higher rates of co-morbid psychopathology, particularly psychosis. Furthermore, psychosis and intellectual decline were positive correlated. CONCLUSION: This is the first report addressing adult patients with 22q11DS and moderate to severe ID. Overall we found high levels of psychopathology with higher scores of psychopathology in the intellectual decline group. Life time psychosis seems to be related to deterioration.


Assuntos
Síndrome da Deleção 22q11/fisiopatologia , Deficiência Intelectual/fisiopatologia , Inteligência/fisiologia , Transtornos Mentais/fisiopatologia , Síndrome da Deleção 22q11/complicações , Adulto , Feminino , Humanos , Deficiência Intelectual/etiologia , Masculino , Transtornos Mentais/etiologia , Pessoa de Meia-Idade , Índice de Gravidade de Doença , Adulto Jovem
7.
Clin Genet ; 84(3): 223-9, 2013 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-23167724

RESUMO

Little is known about the aging process of people with specific syndromes, like Rett syndrome (RTT). Recognition of the clinical and behavioral characteristics of the adult RTT is needed in order to improve future management of the RTT girl and counseling of parents. In association with the Dutch RTT parent association, a 5-year longitudinal study was carried out. The study population consisted of 53 adult women with a clinical diagnosis of RTT. Postal questionnaires were sent, including demographic features, skills, physical and psychiatric morbidity. At the time of the second measurement seven women had died. In 2012, 80% of the questionnaires (37/46) were returned. Mean age of the women was 31.4 years. Molecular confirmation was possible for 83% of the women for whom analyses were carried out. The adult RTT woman has a more or less stable condition. The general disorder profile is that of a slow on-going deterioration of gross motor functioning in contrast to a better preserved cognitive functioning, less autonomic and epileptic features and good general health. This is the first longitudinal cohort study about aging in RTT. Continuing longitudinal studies are needed to gain more insight into the aging process in RTT.


Assuntos
Envelhecimento , Síndrome de Rett/epidemiologia , Adolescente , Adulto , Peso Corporal , Comunicação , Comorbidade , Comportamento Alimentar , Feminino , Estudos de Associação Genética , Genótipo , Acessibilidade aos Serviços de Saúde , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Prevalência , Síndrome de Rett/diagnóstico , Condições Sociais , Inquéritos e Questionários , Adulto Jovem
8.
J Intellect Disabil Res ; 57(3): 257-67, 2013 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23379862

RESUMO

BACKGROUND: Empirical research on homosexuality among people with an intellectual disability (ID) is limited and, to date, very little is known regarding the personal experiences of gay and lesbian people with an ID. This study set out to answer the question: What are the lived experiences of a specific cohort of homosexual people with an intellectual disability living in the Netherlands? METHOD: To answer this question, a qualitative study was performed in which 21 people with a mild ID were interviewed via semi-structured interviews. In this study, 19 participants were men and two were women (average age = 40.5 years). RESULTS: Participants reported positive and negative experiences, and talked about their gay or lesbian identity. Almost half of the participants (n = 10) reported that they had experienced sexual abuse including partner violence (n = 6). Additionally, they indicated that there was a lack of support for homosexual people with an ID. CONCLUSION: Specific problems impact the lives of homosexual people with ID, namely the high prevalence of negative sexual experiences, the lack of support, training and sex education, and their search for a suitable partner.


Assuntos
Homossexualidade Feminina/psicologia , Homossexualidade Masculina/psicologia , Deficiência Intelectual/psicologia , Deficiências da Aprendizagem/psicologia , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Países Baixos , Pesquisa Qualitativa , Índice de Gravidade de Doença , Comportamento Sexual/psicologia , Apoio Social , Estereotipagem , Adulto Jovem
9.
J Intellect Disabil Res ; 57(11): 1027-36, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-22973900

RESUMO

BACKGROUND: According to Dutch jurisdiction, individual support plans (ISP) should register the mutual agreements between a person with intellectual disabilities (ID) and a professional service organisation with respect to the support that will be provided. In planning for support, active involvement of both parties is necessary. The current study focuses on the perceptions and experiences of Dutch persons with ID with respect to their involvement in their ISP. METHOD: Data were gathered through semi-structured interviews with 61 people with mild to moderate ID. Participants were recruited in 23 Dutch service provider organisations. A systematic qualitative analysis was performed on the interview transcripts. RESULTS: Although persons with ID are present at their ISP meeting, active client involvement in developing, executing and evaluating the ISP is not common practice. Issues of accessibility and lack of control over the process and content of ISP hamper effective involvement of people with ID. CONCLUSIONS: The study raises questions concerning ISP practices in the Netherlands. The question needs to be addressed as to how to facilitate active involvement of people with ID in planning for support. The results further suggest that support organisations perceive an ISP rather as a formal document to comply with bureaucratic rules than as an instrument of empowerment to enhance control of persons with ID over their own lives.


Assuntos
Acessibilidade aos Serviços de Saúde , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Serviços de Saúde/estatística & dados numéricos , Deficiência Intelectual/psicologia , Deficiência Intelectual/terapia , Apoio Social , Adulto , Idoso , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Países Baixos , Percepção , Relações Profissional-Paciente , Adulto Jovem
10.
J Intellect Disabil Res ; 57(11): 1068-78, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-22974110

RESUMO

BACKGROUND: The population of ageing people with mild and moderate intellectual disabilities (ID) is growing rapidly. This study examines how personal resources (physical health, mental health and social networks) impact the well-being of ageing people with ID. METHODS: Longitudinal survey data on 667 people with a mild or moderate ID were acquired via interviews in 2006 and 2010. Indicators of personal resources (physical health, mental health and social networks) were assessed, as were indicators of well-being (satisfaction with life, happiness and loneliness). Additionally, data on background characteristics and autonomy were gathered. RESULTS: The results show that age is positively related to decreased mobility and auditory disabilities and negatively related to independent living, autonomy in how one spends one's leisure time and autonomy in decision-making. Longitudinal analyses demonstrated that, with the exception of health that deteriorated, and social satisfaction that improved, almost all variables remained stable over the 4-year period. Further, good physical health in 2006 predicted happiness in 2010. CONCLUSION: Despite the fact that age is associated with poorer physical and mental health and a smaller social network, this study showed that older people with ID have relatively high levels of well-being. Findings are discussed in the light of coping with ageing and impact of life events.


Assuntos
Envelhecimento/psicologia , Efeitos Psicossociais da Doença , Deficiência Intelectual/psicologia , Saúde Mental , Apoio Social , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Coleta de Dados , Características da Família , Feminino , Felicidade , Transtornos da Audição/psicologia , Humanos , Vida Independente , Solidão , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Satisfação Pessoal , Adulto Jovem
11.
Brain Cogn ; 78(3): 206-17, 2012 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-22261226

RESUMO

The ability to flexibly adapt to the changing demands of the environment is often reported as a core deficit in fragile X syndrome (FXS). However, the cognitive processes that determine this attentional set-shifting deficit remain elusive. The present study investigated attentional set-shifting ability in fragile X syndrome males with the well-validated intra/extra dimensional set-shifting paradigm (IED) which offers detailed assessment of rule learning, reversal learning, and attentional set-shifting ability within and between stimulus dimensions. A novel scoring method for IED stage errors was employed to interpret set-shifting failure in terms of repetitive decision-making, distraction to irrelevance, and set-maintenance failure. Performance of FXS males was compared to typically developing children matched on mental age, adults matched on chronological age, and individuals with Down syndrome matched on both mental and chronological age. Results revealed that a significant proportion of FXS males already failed prior to the intra-dimensional set-shift stage, whereas all control participants successfully completed the stages up to the crucial extra-dimensional set-shift. FXS males showed a specific weakness in reversal learning, which was characterized by repetitive decision-making during the reversal of newly acquired stimulus-response associations in the face of simple stimulus configurations. In contrast, when stimulus configurations became more complex, FXS males displayed increased distraction to irrelevant stimuli. These findings are interpreted in terms of the cognitive demands imposed by the stages of the IED in relation to the alleged neural deficits in FXS.


Assuntos
Atenção/fisiologia , Síndrome do Cromossomo X Frágil/psicologia , Reversão de Aprendizagem/fisiologia , Enquadramento Psicológico , Adulto , Cognição/fisiologia , Tomada de Decisões/fisiologia , Feminino , Humanos , Deficiência Intelectual/psicologia , Masculino , Testes Neuropsicológicos
12.
Horm Behav ; 59(4): 444-50, 2011 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-21223969

RESUMO

Mental retardation is one of the clinical characteristics of Prader-Willi syndrome (PWS) and in part of the patients growth hormone deficiency is demonstrable. Cognitive function seems to be influenced by insulin-like growth factor I (IGF-I); however, little is known about cognitive function in relation to IGF-I levels in PWS adults. The aim of the present study was to evaluate cognitive function in adult PWS patients in comparison to healthy siblings and to investigate whether there is a correlation between cognitive function and IGF-I levels. Anthropometric measurements, IGF-I levels, quality of life (QoL), Appetite Assessment Score, IQ (GIT and Raven) and cognitive function (by four subtests of the Cambridge Neuropsychological Automated Testing Battery, CANTAB) were evaluated in PWS patients and their healthy siblings served as control group. PWS patients had significantly lower IGF-I levels, IQ and QoL when compared to controls. Reaction times were longer and performance was worse on CANTAB subtests in PWS adults. IGF-I on one hand and IQ, Appetite Assessment Score and cognitive performance on the other hand seem to be correlated in PWS patients. In conclusion, IGF-I levels, IQ and QoL are significantly lower in PWS subjects when compared to healthy siblings. In PWS adults, temporal as well as prefrontal cognitive functions are impaired. Higher IGF-I levels appear to be related to better intellectual skills and faster temporal memory processing in PWS patients.


Assuntos
Cognição/fisiologia , Fator de Crescimento Insulin-Like I/metabolismo , Síndrome de Prader-Willi/sangue , Síndrome de Prader-Willi/psicologia , Qualidade de Vida/psicologia , Adulto , Feminino , Humanos , Inteligência/fisiologia , Masculino , Memória/fisiologia , Testes Neuropsicológicos , Tempo de Reação/fisiologia
13.
J Intellect Disabil Res ; 55(1): 4-18, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-21029235

RESUMO

BACKGROUND: Community participation has been defined as performing daytime activities by people while interacting with others. Previous studies on community participation among people with intellectual disability (ID) have mainly focused on the domestic life aspect. This study investigates the variation in community participation in the domains work, social contacts and leisure activities among people with ID in the Netherlands. A number of categories of people with ID were distinguished by: (1) gender; (2) age; (3) type of education; (4) severity of ID; and (5) accommodation type. METHODS: Data were gathered on 653 people with mild or moderate ID, of whom 513 by oral interviews and 140 by structured questionnaires filled in by representatives of those who could not be interviewed. Pearson chi-square tests were used to test differences between categories of people with ID in the distributions of the participation variables. Additional logistic regression analyses were conducted to correct for differences between the categories in other variables. RESULTS: Most people with mild or moderate ID in the Netherlands have work or other daytime activities, have social contacts and have leisure activities. However, people aged 50 years and over and people with moderate ID participate less in these domains than those under 50 years and people with mild ID. Moreover, people with ID hardly participate in activities with people without ID. CONCLUSION: High participation among people with a mild or moderate ID within the domains of work, social contact and leisure activities does not necessarily indicate a high level of interaction with the community, because the majority hardly interact with people without ID. Furthermore, older people with ID and people with a more severe level of ID seem to be more at risk for social exclusion.


Assuntos
Deficiência Intelectual/psicologia , Deficiência Intelectual/reabilitação , Inteligência , Relações Interpessoais , Atividades de Lazer , Reabilitação Vocacional , Atividades Cotidianas/classificação , Atividades Cotidianas/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Avaliação da Deficiência , Feminino , Humanos , Entrevista Psicológica , Masculino , Pessoa de Meia-Idade , Países Baixos , Meio Social , Inquéritos e Questionários , Adulto Jovem
14.
J Intellect Disabil Res ; 54(1): 52-9, 2010 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-19888921

RESUMO

BACKGROUND: Persons with intellectual disability (ID) and sleep problems exhibit more daytime challenging behaviours than persons with ID without sleep problems. Several anecdotal reports suggest that melatonin is not only effective in the treatment of insomnia, but also decreases daytime challenging behaviour. However, the effect of melatonin treatment on daytime challenging behaviour in persons with ID has not been investigated in a randomised controlled trial. METHOD: We investigated the effects of melatonin on challenging behaviour using data from two randomised controlled trials on the efficacy of melatonin on sleep problems in 49 persons (25 men, 24 women; mean age 18.2 years, SD = 17.1) with ID and chronic insomnia. Participants received either melatonin 5 mg (<6 years 2.5 mg) or placebo during 4 weeks. Daytime challenging behaviour was measured by the Storend Gedragsschaal voor Zwakzinnigen - Maladaptive Behaviour Scale for the Mentally Retarded (SGZ; Kraijer & Kema, 1994) at baseline week and the end of the fourth treatment week. Salivary dim light melatonin onset (DLMO) was measured at baseline and the last day of the fourth treatment week. Sleep logs were used to gather information on sleep parameters. RESULTS: Melatonin treatment significantly reduced SGZ scores, sleep latency, and number and duration of night wakes, and treatment increased total sleep time and advanced DLMO. However, after 4 weeks of treatment, change in SGZ scores did not significantly correlate with change in sleep parameters, nor with change in DLMO. Relatively strong correlations were found between change in SGZ scores, change in DLMO and number of night wakes. CONCLUSIONS: Melatonin treatment in persons with ID and chronic insomnia decreases daytime challenging behaviour, probably by improving sleep maintenance or by improving circadian melatonin rhythmicity.


Assuntos
Ritmo Circadiano/efeitos dos fármacos , Deficiência Intelectual/tratamento farmacológico , Melatonina/uso terapêutico , Distúrbios do Início e da Manutenção do Sono/tratamento farmacológico , Transtornos do Comportamento Social/tratamento farmacológico , Adolescente , Adulto , Criança , Pré-Escolar , Doença Crônica , Feminino , Humanos , Deficiência Intelectual/psicologia , Masculino , Melatonina/sangue , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como Assunto , Sono/efeitos dos fármacos , Distúrbios do Início e da Manutenção do Sono/psicologia , Transtornos do Comportamento Social/psicologia , Vigília/efeitos dos fármacos
15.
J Intellect Disabil Res ; 54(10): 906-17, 2010 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-20636465

RESUMO

BACKGROUND: Individuals with Prader-Willi syndrome (PWS) are at risk of sleep disturbances, such as excessive daytime sleepiness (EDS) and sleep apnoea, and behavioural problems. Sleep disturbances and their relationship with other variables had not been researched extensively in adults with PWS. METHOD: Sleep disturbances and behavioural problems were investigated in adults with genetically confirmed PWS using standardised questionnaires. Results of adults with paternal deletion (n=45) were compared with those of adults with maternal uniparental disomy (n=33). RESULTS: Eleven adults with PWS (i.e. 15%) had a current sleep problem, mostly night waking problems. Twenty-six adults with PWS (i.e. 33%) suffered from severe EDS. No differences in prevalence of sleep disturbances between genetic subtypes were found. Seventeen adults with deletion (i.e. 38%) and 17 adults with maternal uniparental disomy (i.e. 52%) had behavioural problems. No significant relationships were found between sleep disturbances and behavioural problems. CONCLUSIONS: In adults with PWS, EDS is the most common type of sleep disturbance. Men and individuals with relative high body mass index are at increased risk for EDS. More research, aimed at developing a suitable screening instrument for sleep apnoea in adults with PWS, is necessary. Clinical implications of the findings are discussed.


Assuntos
Transtornos Mentais/epidemiologia , Síndrome de Prader-Willi/epidemiologia , Síndromes da Apneia do Sono/epidemiologia , Inquéritos e Questionários , Adolescente , Adulto , Idoso , Feminino , Humanos , Modelos Logísticos , Masculino , Transtornos Mentais/diagnóstico , Pessoa de Meia-Idade , Síndrome de Prader-Willi/genética , Fatores de Risco , Síndromes da Apneia do Sono/diagnóstico , Fases do Sono , Adulto Jovem
16.
J Intellect Disabil Res ; 53(1): 54-64, 2009 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-19093982

RESUMO

STUDY DESIGN: A systematic review of the literature. OBJECTIVES: To describe which environmental factors have an impact on community participation of persons with an intellectual disability. METHODS: A systematic literature search was conducted for the period of 1996-2006 in Pubmed, CINAHL and PSYCINFO. Search terms were derived from the International Classification of Functioning, Disability and Health. Three investigators assessed the relevance of the studies identified using predefined selection criteria. Aspects of community participation included were: domestic life; interpersonal interactions and relationships; major life areas; community, civic and social life. Environmental factors included were: products and technology; natural environment and human-made changes to environment; support and relationships; attitudes; services, systems and policies. RESULTS: Out of 236 initial hits, 9 quantitative studies and 2 qualitative studies met the predefined selection criteria and were included in the study. Various research instruments were used in the studies and only one study used a conceptual framework. The review allowed the identification of a number of environmental factors positively affecting participation: opportunities to make choices; variety and stimulation of the environment of facilities; opportunities for resident involvement in policy making; small residential facilities; opportunities for autonomy; vocational services; social support; family involvement; assistive technology; and positive staff attitudes. A number of identified environmental factors negatively affecting participation are: lack of transport and not feeling accepted. DISCUSSION: It can be concluded that little has been published about the impact of environmental factors on community participation. Many studies do not clearly define the concept of community participation. Research on the impact of environmental factors on community participation so far seems not to be based on a theoretical framework. Most studies focused on the impact of services on community participation in general.


Assuntos
Serviços de Saúde/estatística & dados numéricos , Deficiência Intelectual/psicologia , Relações Interpessoais , Participação do Paciente/psicologia , Características de Residência , Meio Social , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente/estatística & dados numéricos , Relações Profissional-Paciente , Comportamento Social , Apoio Social , Adulto Jovem
17.
J Intellect Disabil Res ; 53(4): 303-18, 2009 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-19087215

RESUMO

STUDY DESIGN: A systematic review of the literature. OBJECTIVES: To investigate community participation of persons with an intellectual disability (ID) as reported in empirical research studies. METHOD: A systematic literature search was conducted for the period of 1996-2006 on PubMed, CINAHL and PSYCINFO. Search terms were derived from the International Classification of Functioning, Disability and Health. Three investigators assessed the relevance of the initially identified studies using predefined content and methodological selection criteria. Included domains of community participation were: (1) domestic life; (2) interpersonal interactions and relationships; (3) major life areas; and (4) community, civic and social life. RESULTS: Of 2936 initial hits, 23 quantitative studies eventually met the selection criteria and were included in the study. Only two studies are based on a theoretical framework. Research instruments were various and were most often ad hoc and not validated. The average number of persons in the social network of people with ID appears to be 3.1, one of them usually being a professional service staff member. People with ID are 3-4 times less employed than non-disabled peers; they are less likely to be employed competitively and are more likely to work in sheltered workshops or in segregated settings than those with other disabilities. People with ID are less likely to be involved in community groups, and leisure activities are mostly solitary and passive in nature. Most of the people with ID had been accompanied in an activity by training/therapeutic staff. CONCLUSION: It can be concluded that on the basis of empirical evidence, within the time frame of this literature search, little is known about community participation of people with ID. Many researchers did not clearly define community participation and were concerned with limited areas of community participation; research is seldom based on a theoretical framework. Most studies focus on people with mild ID, and there are few reports of the subjects' sample. However, one conclusion can consistently be drawn from the review: people with ID living in community settings participate more than people living in a segregated setting, but their participation level is still much lower than non-disabled and other disability groups.


Assuntos
Participação da Comunidade/estatística & dados numéricos , Pesquisa Empírica , Deficiência Intelectual/epidemiologia , Humanos
18.
J Intellect Disabil Res ; 53(8): 745-57, 2009 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-19558458

RESUMO

BACKGROUND: People with intellectual disability (ID) who live in regular neighbourhoods have experiences with their neighbours, which are important to understand when studying social integration. METHOD: This study describes and analyses the opinions on, and experiences with, neighbour relationships of 39 people with ID living in neighbourhood housing facilities. RESULTS: We found that, while the views of people with ID on 'good neighbouring' were consistent with 'neighbouring' described in sociological literature, their experiences may be influenced by an organisational context, the tendency to formalise relationships and apprehension towards meeting unfamiliar people. CONCLUSION: Understanding influential factors to neighbouring for people with ID may shed light on the processes involved in social integration of people with ID at a neighbourhood level. This paper contributes to understanding the opinions of people with ID on satisfactory neighbourhood relationships, and explores opportunities to improve them.


Assuntos
Deficiência Intelectual , Características de Residência , Meio Social , Adolescente , Adulto , Idoso , Serviços Comunitários de Saúde Mental/organização & administração , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Comportamento Social , Meios de Transporte , Urbanização , Adulto Jovem
19.
J Intellect Disabil Res ; 53(8): 704-15, 2009 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-19508289

RESUMO

BACKGROUND: Sleep problems are common in individuals with intellectual disability. Little is known about sleep in children and adults with Cri du Chat syndrome (CDC). METHOD: Sleep was investigated in 30 individuals with CDC using a sleep questionnaire. Sleep problems and sleep behaviours in individuals with CDC were compared with individuals with non-specific intellectual disabilities (NS) (n = 30) and Down's syndrome (DS) (n = 30). RESULTS: Nine individuals with CDC (i.e. 30%) had a sleep problem, compared with seven individuals with NS (i.e. 23%) and three individuals with DS (i.e. 10%). Though there were few differences between diagnostic groups, night waking problems were most common in CDC. Individuals with CDC frequently showed behaviours related to disordered breathing and poor-quality sleep. Several behaviours related to sleep had a higher occurrence in CDC than in DS (P < 0.05) but not in NS. CONCLUSIONS: It is concluded that individuals with CDC do not have an increased probability of sleep problems as compared with other individuals who share similar demographic characteristics. Hypotheses about causes of night waking problems in CDC are generated and suggestions for future research of sleep in individuals with CDC are given.


Assuntos
Síndrome de Cri-du-Chat/epidemiologia , Transtornos do Sono-Vigília/diagnóstico , Transtornos do Sono-Vigília/epidemiologia , Adolescente , Adulto , Criança , Pré-Escolar , Síndrome de Cri-du-Chat/genética , Feminino , Testes Genéticos , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Prevalência , Índice de Gravidade de Doença , Estatísticas não Paramétricas , Inquéritos e Questionários , Adulto Jovem
20.
Genet Couns ; 20(4): 307-15, 2009.
Artigo em Inglês | MEDLINE | ID: mdl-20162865

RESUMO

The velo-cardio-facial syndrome: the spectrum of psychiatric problems and cognitive deterioration at adult age: Deletion 22q11.2 syndrome, or the velo-cardio-facial syndrome (VCFS), is a syndrome with a known but varied clinical and behavioral phenotype. We report 7 patients with 22q11.2 deletion syndrome and an intellectual disability. Aside from the described behavioral phenotype in literature, a moderate, severe or profound intellectual disability may be present. Special attention should be given to cognitive deterioration.


Assuntos
Síndrome de DiGeorge/psicologia , Deficiência Intelectual/etiologia , Transtornos Neurocognitivos/etiologia , Transtornos Psicóticos/etiologia , Adulto , Transtorno Autístico/etiologia , Demência/etiologia , Progressão da Doença , Feminino , Humanos , Inteligência , Masculino , Pessoa de Meia-Idade , Países Baixos , Esquizofrenia/etiologia
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