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1.
Am J Intellect Dev Disabil ; 123(3): 241-253, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29671635

RESUMO

It is well documented that mothers of children with challenging behavior (CB) experience elevated levels of stress and that this persists over time, but less is known about the experience of mothers of children with rare genetic syndromes. This article describes 2 studies, 1 cross-sectional and 1 longitudinal, comparing well-being in mothers of children with Angelman, Cornelia de Lange and Cri du Chat syndrome who have either shown chronic CB ( n = 18) or low/no CB ( n = 26) in the preceding 7 years. The presence of chronic, long-term CB increased maternal stress but not depression or anxiety, and did not influence positive well-being. Stress relating specifically to their child's genetic syndrome reduced with age, highlighting the need for further exploration in this area.


Assuntos
Síndrome de Angelman , Ansiedade/psicologia , Síndrome do Miado do Gato , Síndrome de Lange , Depressão/psicologia , Saúde Mental , Mães/psicologia , Comportamento Problema , Estresse Psicológico/psicologia , Atividades Cotidianas , Adolescente , Adulto , Síndrome de Angelman/fisiopatologia , Síndrome de Angelman/psicologia , Estudos de Casos e Controles , Criança , Síndrome do Miado do Gato/fisiopatologia , Síndrome do Miado do Gato/psicologia , Estudos Transversais , Síndrome de Lange/fisiopatologia , Síndrome de Lange/psicologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Comportamento Problema/psicologia , Doenças Raras , Adulto Jovem
2.
Arch Phys Med Rehabil ; 98(12): 2520-2525, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-28648682

RESUMO

OBJECTIVE: To undertake a qualitative investigation of exercise perceptions and experiences in people with multiple sclerosis (PwMS) before, during, and after participation in a personally tailored program designed to promote long-term maintenance of self-directed exercise. DESIGN: Focus groups and semistructured telephone interviews. SETTING: University exercise science department close to the recruiting hospital. PARTICIPANTS: PwMS (N=33; mean age ± SD, 47.6±7.9y). INTERVENTIONS: Participants were recruited after participation in a randomized controlled exercise trial; all had been allocated to a 12-week exercise program comprising supervised and self-directed exercise sessions. MAIN OUTCOME MEASURES: Exercise perceptions and experiences before, during, and after participation in the program. RESULTS: Four themes emerged from the analysis: (1) the transition to inactivity; (2) lack of knowledge and confidence; (3) positive exercise experiences; and (4) perspectives on exercise adherence. CONCLUSIONS: Lack of confidence and exercise knowledge, coupled with negative perceptions about physical capabilities after an MS diagnosis, are clear barriers to exercise participation in PwMS. These issues are not being adequately addressed as part of the health care pathway or in community settings. Perceptions of improved posture, ability to overcome everyday difficulties, acute mood enhancements during and after exercise, and increased opportunities for social interaction were among the reported benefits of exercise participation. Despite the provision of a personally tailored exercise plan and use of cognitive behavioral strategies, self-directed exercise continued to present challenges to PwMS, and the importance of seeking cost-effective ways to maintain motivational support was implicit in participant responses.


Assuntos
Terapia por Exercício/métodos , Terapia por Exercício/psicologia , Esclerose Múltipla/psicologia , Esclerose Múltipla/reabilitação , Percepção , Adulto , Exercício/psicologia , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Autoeficácia
3.
Trials ; 16: 468, 2015 Oct 15.
Artigo em Inglês | MEDLINE | ID: mdl-26470880

RESUMO

BACKGROUND: The success of a clinical trial is often dependant on whether recruitment targets can be met in the required time frame. Despite an increase in research into the benefits of exercise in people with multiple sclerosis (PwMS), no trial has reported detailed data on effective recruitment strategies for large-scale randomised controlled trials. The main purpose of this report is to provide a detailed outline of recruitment strategies, rates and estimated costs in the Exercise Intervention for Multiple Sclerosis (ExIMS) trial to identify best practices for future trials involving multiple sclerosis (MS) patient recruitment. METHODS: The ExIMS researchers recruited 120 PwMS to participate in a 12-week exercise intervention. Participants were randomly allocated to either exercise or usual-care control groups. Participants were sedentary, aged 18-65 years and had Expanded Disability Status Scale scores of 1.0-6.5. Recruitment strategies included attendance at MS outpatient clinics, consultant mail-out and trial awareness-raising activities. RESULTS: A total of 120 participants were recruited over the course of 34 months. To achieve this target, 369 potentially eligible and interested participants were identified. A total of 60 % of participants were recruited via MS clinics, 29.2 % from consultant mail-outs and 10.8 % through trial awareness. The randomisation yields were 33.2 %, 31.0 % and 68.4 % for MS clinic, consultant mail-outs and trial awareness strategies, respectively. The main reason for ineligibility was being too active (69.2 %), whilst for eligible participants the most common reason for non-participation was the need to travel to the study site (15.8 %). Recruitment via consultant mail-out was the most cost-effective strategy, with MS clinics being the most time-consuming and most costly. CONCLUSIONS: To reach recruitment targets in a timely fashion, a variety of methods were employed. Although consultant mail-outs were the most cost-effective recruitment strategy, use of this method alone would not have allowed us to obtain the predetermined number of participants in the required time period, thus leading to costly extensions of the project or failure to reach the number of participants required for sufficient statistical power. Thus, a multifaceted approach to recruitment is recommended for future trials. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Registry number: ISRCTN41541516 ; date registered: 5 February 2009.


Assuntos
Publicidade como Assunto/economia , Terapia por Exercício , Esclerose Múltipla/terapia , Seleção de Pacientes , Adolescente , Adulto , Idoso , Instituições de Assistência Ambulatorial/economia , Protocolos Clínicos , Análise Custo-Benefício , Avaliação da Deficiência , Inglaterra , Terapia por Exercício/economia , Feminino , Custos de Cuidados de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/economia , Esclerose Múltipla/fisiopatologia , Serviços Postais/economia , Encaminhamento e Consulta/economia , Apoio à Pesquisa como Assunto , Tamanho da Amostra , Comportamento Sedentário , Fatores de Tempo , Resultado do Tratamento , Adulto Jovem
4.
BMC Neurol ; 15: 147, 2015 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-26293925

RESUMO

BACKGROUND: Inflammatory neuropathies such as Guillain-Barré syndrome, chronic inflammatory demyelinating polyradiculoneuropathy and paraproteinaemic demyelinating neuropathy are a heterogenous group of peripheral nerve disorders that affect around one to two people per 100,000. Whilst treatments such as intravenous immunoglobulin, plasma exchange and corticosteroids have generally positive results, long-term residual symptoms and associated activity limitations are common. There is currently no standardised care for patients with ongoing activity limitation and participation restriction as a result of inflammatory neuropathy IN but data from observational studies and a randomised controlled trial suggest that exercise either alone or as part of a multidisciplinary rehabilitation programme may be beneficial in improving activity limitation. Tailoring the intervention for participants following physiotherapy assessment and incorporating patient preference for type and location of exercise may be important. METHODS/DESIGN: The current study is a pragmatic, prospective, parallel observer-blind, randomised controlled trial to evaluate the efficacy and cost-effectiveness of a twelve week tailored home exercise programme versus advice and usual care. Seventy adults with stable immune mediated inflammatory neuropathy IN will be recruited to the study from two main sources: patients attending selected specialist peripheral nerve clinics in the South East and West Midlands of England and people with who access the GAIN charity website or newsletter. Participants will be randomised to receive either advice about exercise and usual care or a 12 week tailored home exercise programme. The primary outcome of activity limitation and secondary outcomes of fatigue, quality of life, self-efficacy, illness beliefs, mood and physical activity will be assessed via self-report questionnaire at baseline, 12 weeks and 12 months post intervention. Cost effectiveness and cost utility will be assessed via interview at baseline and 12 months post intervention. Intention to treat analysis will be our primary model for efficacy analysis. Semi-structured interviews will be conducted with a selected sample of participants in order to explore the acceptability of the intervention and factors affecting adherence to the exercise programme. DISCUSSION: This is the first randomised controlled trial to compare the efficacy and cost-effectiveness of tailored home exercise with advice about exercise and usual care for adults with inflammatory neuropathy. TRIAL REGISTRATION: Current Controlled Trials ISRCTN13311697.


Assuntos
Terapia por Exercício/métodos , Doenças do Sistema Imunitário/reabilitação , Inflamação/reabilitação , Doenças do Sistema Nervoso/reabilitação , Telerreabilitação/métodos , Adulto , Idoso , Análise Custo-Benefício , Inglaterra , Exercício , Terapia por Exercício/economia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modalidades de Fisioterapia , Estudos Prospectivos , Qualidade de Vida , Autoeficácia , Método Simples-Cego , Inquéritos e Questionários , Telerreabilitação/economia
5.
Am J Intellect Dev Disabil ; 118(4): 262-83, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-23937369

RESUMO

We evaluated autism spectrum disorder (ASD) characteristics and social behavior in Angelman (AS; n  =  19; mean age  = 10.35 years), Cornelia de Lange (CdLS; n  =  15; mean age  = 12.40 years), and Cri du Chat (CdCS, also known as 5 p-syndrome; n  =  19; mean age  =  8.80 years) syndromes. The proportion of individuals meeting the ASD cutoff on the Social Communication Questionnaire was significantly higher in the AS and CdLS groups than in the CdCS group (p < .01). The groups demonstrated divergent social behavior profiles during social conditions in which adult availability, adult familiarity, and social demand were manipulated. Social enjoyment was significantly heightened in AS, whereas social approaches were heightened in individuals with CdCS. Social motivation, social communication, and enjoyment were significantly lower in CdLS. The findings highlight the importance of detailed observation when evaluating ASD and social behavior in genetic syndromes.


Assuntos
Síndrome de Angelman/fisiopatologia , Transtornos Globais do Desenvolvimento Infantil/fisiopatologia , Síndrome do Miado do Gato/fisiopatologia , Síndrome de Lange/fisiopatologia , Comportamento Social , Adolescente , Adulto , Síndrome de Angelman/epidemiologia , Criança , Transtornos Globais do Desenvolvimento Infantil/epidemiologia , Pré-Escolar , Comorbidade , Síndrome do Miado do Gato/epidemiologia , Síndrome de Lange/epidemiologia , Feminino , Humanos , Relações Interpessoais , Masculino , Fenótipo , Escalas de Graduação Psiquiátrica , Testes Psicológicos , Pesquisa Qualitativa , Inquéritos e Questionários , Adulto Jovem
6.
J Autism Dev Disord ; 42(6): 910-9, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21720724

RESUMO

We evaluated the independent association between adaptive behavior, communication and repetitive or ritualistic behaviors and self-injury, aggression and destructive behavior to identify potential early risk markers for challenging behaviors. Data were collected for 943 children (4-18 years, M = 10.88) with severe intellectual disabilities. Odds ratio analyses revealed that these characteristics generated risk indices ranging from 2 to 31 for the presence and severity of challenging behaviors. Logistic regressions revealed that high frequency repetitive or ritualistic behavior was associated with a 16 times greater risk of severe self-injury and a 12 times greater risk of showing two or more severe challenging behaviors. High frequency repetitive or ritualistic behaviors independently predict challenging behavior and have the potential to be early risk markers for self-injury and aggression of clinical significance.


Assuntos
Agressão/psicologia , Deficiência Intelectual/complicações , Comportamento Autodestrutivo/complicações , Comportamento Estereotipado , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Deficiência Intelectual/parasitologia , Masculino , Comportamento Autodestrutivo/psicologia
7.
J Genet Couns ; 20(2): 165-77, 2011 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-21203808

RESUMO

The experiences of mothers of adult offspring with Angelman, Cornelia de Lange, or Cri du Chat syndrome have not been previously explored in research. The current study focuses on experiences with social and medical services and the impact the rareness of an adult offspring's syndrome has on the experiences of mothers. Eight mothers of adults with Angelman, Cornelia de Lange, or Cri du Chat syndrome were interviewed. Thematic Content Analysis was used to interpret the interviews. Four themes emerged from the analysis: (i) The rarity of their offspring's syndrome, (ii) Uneven medical and social care service provision, (iii) The inertia of social care services, and (iv) Mothers as advocates. Mothers felt that the rareness of their offspring's syndrome did not affect experiences with social care services, but did affect access to medical services and some aspects of day-to-day living. Accessing appropriate social care services was reported to be a lengthy and complex process. These data may help inform care service providers about how best to support adults with rare genetic syndromes and their families.


Assuntos
Deficiência Intelectual/genética , Mães/psicologia , Doenças Raras/genética , Apoio Social , Feminino , Humanos
8.
Am J Intellect Dev Disabil ; 114(5): 356-68, 2009 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-19928017

RESUMO

We used experimental and descriptive functional analyses and lag sequential analyses to examine the functional and temporal relationship among the self-injurious (SIB), potentially injurious, repetitive, challenging, and pragmatic communicative behaviors of 6 children with intellectual disabilities. Functional analyses revealed social function for SIB, potentially injurious, and repetitive behaviors across 5, 4, and 5 participants, respectively. Sixteen functionally equivalent response classes were identified across participants using both experimental and naturalistic observation data. Repetitive, potentially injurious, and SIB behaviors were significantly temporally associated, and pragmatic communicative behaviors were strongly temporally associated with challenging behaviors. The importance of the temporal and functional relationship between imperative communicative acts and challenging behavior is discussed.


Assuntos
Comunicação , Deficiência Intelectual/psicologia , Comportamento Autodestrutivo/psicologia , Adolescente , Agressão , Criança , Pré-Escolar , Interpretação Estatística de Dados , Feminino , Humanos , Relações Interpessoais , Transtornos do Desenvolvimento da Linguagem/psicologia , Masculino , Comportamento Estereotipado , Inquéritos e Questionários
9.
J Health Serv Res Policy ; 12(3): 173-80, 2007 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-17716421

RESUMO

OBJECTIVE: The quality of clinical care is often assessed by retrospective examination of case-notes (charts, medical records). Our objective was to determine the inter-rater reliability of case-note audit. METHODS: We conducted a systematic review of the inter-rater reliability of case-note audit. Analysis was restricted to 26 papers reporting comparisons of two or three raters making independent judgements about the quality of care. RESULTS: Sixty-six separate comparisons were possible, since some papers reported more than one measurement of reliability. Mean kappa values ranged from 0.32 to 0.70. These may be inflated due to publication bias. Measured reliabilities were found to be higher for case-note reviews based on explicit, as opposed to implicit, criteria and for reviews that focused on outcome (including adverse effects) rather than process errors. We found an association between kappa and the prevalence of errors (poor quality care), suggesting alternatives such as tetrachoric and polychoric correlation coefficients be considered to assess inter-rater reliability. CONCLUSIONS: Comparative studies should take into account the relationship between kappa and the prevalence of the events being measured.


Assuntos
Auditoria Médica/métodos , Garantia da Qualidade dos Cuidados de Saúde/métodos , Reprodutibilidade dos Testes , Bases de Dados Bibliográficas , Tomada de Decisões , Determinação de Ponto Final , Humanos , Variações Dependentes do Observador , Estudos de Validação como Assunto
10.
Curr Opin Psychiatry ; 18(5): 484-9, 2005 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-16639105

RESUMO

PURPOSE OF REVIEW: In this paper we review literature published in 2004 on self-injurious behaviour in individuals with intellectual disabilities. Reviewed studies examine phenomenology and comorbidity, pharmacological and other interventions, genetic syndromes, and behavioural assessment and treatment. RECENT FINDINGS: Key findings include the possible association between self-injury and impulse control and stereotyped behaviours. Reports on the use of pharmacological interventions provide little evidence for the use such interventions, although the findings of studies on naltrexone seem stronger. In the behavioural phenotype literature the predictors of self-injury in Prader-Willi syndrome are becoming more refined. The behaviour analysis literature reports further development of assessment methodology to cater for idiosyncratic functions and low-rate behaviours. SUMMARY: Developments in the fields of applied behaviour analysis and genetic syndromes highlight the importance of tailored assessments and interventions. Evidence from the pharmacological literature suggests that although significant numbers of individuals are prescribed such interventions, the research evidence for their efficacy is, at best, weak.

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