Habilidades funcionais e assistência do cuidador de crianças e adolescentes com síndrome de Down / Functional habilities and caregivers assistance of children and adolescents with Down syndrome

Introdução: A síndrome de Down (SD) é uma das cromossomopatias mais frequentes em todo o mundo e é a causa mais comum de deficiência intelectual.. Embora trabalhos disponibilizem evidências sobre as limitações em atividades e restrição na participação de pessoas com SD, informações sobre o impacto destas limitações na família e principalmente uma caracterização da assistência necessária pelo cuidador ainda é uma área pouco explorada, mas necessária para organizar um programa de reabilitação. Objetivo: Analisar as habilidades funcionais de crianças e adolescentes com Síndrome de Down e a assistência oferecida pelos cuidadores, o que será fundamental para organização de programas de reabilitação. Método: Trata-se de trabalho analítico, transversal em que foram entrevistados 100 pais/cuidadores de crianças e adolescentes com SD através do Inventário de Avaliação Pediátrica de Incapacidades (PEDI). As habilidade funcionais e a assistência oferecida pelos cuidadores obtidas foram distribuídas em gráficos de dispersão. Para as análises estatísticas foram utilizados os softwares MedCalc versão 16.8.4 e GraphPad Prism versão 6.07. Resultados: Crianças e adolescentes com SD necessitam maior tempo para aquisição das habilidades de auto-cuidado, mobilidade e função social, sendo mais evidente nas duas últimas. Seus pais conseguem identificar melhor suas dificuldades antes dos 8 anos e necessitam de apoio profissional especializado a partir dessa faixa etária para auxiliar o desenvolvimento das potencialidades de seus filhos. Conclusão: Os pais conseguem identificar as dificuldades de seus filhos em idades mais precoces e oferecem mais assistência, porém não ocorre o mesmo à medida que atingem a idade escolar, indicando a necessidade de apoio profissional nesse período que não se restrinja às orientações e à escola

Introduction: Down Syndrome (DS) is one of the most common chromosomal disorders worldwide and is the most common cause of intellectual disability. Although there is evidence of limitations in activities and restriction of participation in people with DS, information about the impact of these limitations on the family and especially a characterization of the care needed by the caregiver is still an unexplored but necessary area to organize a rehabilitation program. Objective: To analyze the functional abilities of children and adolescents with Down Syndrome and the care provided by caregivers, which will be fundamental for the organization of rehabilitation programs. Method: This is an analytical, transversal work in which 100 parents / caregivers of children and adolescents with DS were interviewed through the Pediatric Assessment of Disabilities Inventory (PEDI). The functional skills and care provided by the caregivers obtained were distributed in scatter plots. Statistical analyzes were performed using MedCalc software version 16.8.4 and GraphPad Prism version 6.07. Results: Children and adolescents with DS need more time to acquire the abilities of self-care, mobility and social function, being more evident in the last two. Their parents are able to better identify their difficulties before they are 8 years old and require specialized professional support from this age group to help their children\'s development. Conclusion: Parents are able to identify the difficulties of their children at a younger age and offer more assistance, but they do not do so as they reach school age, indicating the need for professional support in this period that is not restricted to guidelines and school

Results From Three Performance Validity Tests (PVTs) in Adults With Intellectual Deficits.

Previous studies of performance on the Word Memory Test (WMT; Green, 2003 ; Green & Astner, 1995 ) in adults with very low intelligence have provided conflicting evidence. Most studies suggest that a Full-Scale IQ (FSIQ) less than 70 cannot explain failure on the WMT, but Shandera et al. ( 2010 ) suggest that many adults with mental retardation (MR) cannot pass the WMT. If so, we would expect adults with such low intelligence to fail the WMT at a high rate, even if they were motivated to perform well. In the current study, parents with an FSIQ of 70 or less, who were seeking custody of their children, rarely failed the WMT or the Medical Symptom Validity Test (MSVT; Green, 2004 ). They did not fail the WMT or MSVT any more often than adults of higher intelligence. On the other hand, adults with an external incentive to appear impaired scored significantly lower on the WMT and MSVT than did parents with an incentive to look good. The data strongly suggest that MR with an FSIQ in the range of 46 to 70 is not sufficient to explain failure on these performance validity tests by adults.

Foster care, residential care and public care placement patterns are associated with adult life trajectories: population-based cohort study.

OBJECTIVES: Childhood experiences of public care may be associated with adult psychosocial outcomes. This study aimed to evaluate the associations of four public care exposures: type of placement, length of placement, age at admission to care and number of placements, as well as the reasons for admission to public care with emotional and behavioural traits at age 30 years. METHODS: Participants included 10,895 respondents at the age 30 survey of the 1970 British Cohort Study (BCS70) who were not adopted and whose care history was known. Analyses were adjusted for individual, parental and family characteristics in childhood. RESULTS: Cohort members with a public care experience presented lower childhood family socio-economic status compared with those in the no public care group. After adjusting for confounding, exposure to both foster and residential care, longer placements and multiple placements were associated with more extensive adult emotional and behavioural difficulties. Specifically, residential care was associated with increased risk of adult criminal convictions (OR = 3.09, 95% CI: 2.10-4.55) and depression (1.81, 1.23-2.68). Multiple placements were associated with low self-efficacy in adulthood (OR = 3.57, 95% CI: 2.29, 5.56). Admission to care after the age of 10 was associated with increased adult criminal convictions (OR = 6.03, 95% CI: 3.34-10.90) and smoking (OR = 3.32, 95% CI: 1.97-5.58). CONCLUSION: Adult outcomes of childhood public care reflect differences in children's experience of public care. Older age at admission, multiple care placements and residential care may be associated with worse outcomes.

Family caregiver satisfaction with the nursing home after placement of a relative with dementia.

OBJECTIVE: This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies. METHODS: A stress process model is used to study caregiver satisfaction among 285 family caregivers in relation to primary objective stressors (stage of dementia, length of stay, length of time in caregiving role, visitation frequency, involvement in nursing home, and involvement in hands-on care), subjective stressors (expectations for care), caregiver characteristics (education, marital status, familial relationship, workforce participation, distance from nursing home, and age), and organizational resources (rural/urban location, profit/nonprofit ownership, special care unit [SCU] designation, and custodial unit designation). SAS PROC MIXED is used in a multilevel analysis. RESULTS: Higher satisfaction is associated with earlier stage of dementia, greater length of time involved in caregiving prior to institutionalization, higher visitation frequency, less involvement in hands-on care, greater expectations for care, and less workforce participation. DISCUSSION: Multilevel analysis showed that primary stressors are the strongest predictors of satisfaction. Only one caregiver characteristic (work participation) and one organizational resource (rural/urban location) predict satisfaction. SCU designation was unrelated to satisfaction, perhaps because SCUs have less to offer residents in more advanced as opposed to earlier stages of Alzheimer disease. If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.

Professionally indicated short-term risk-taking in the treatment of borderline personality disorder.

OBJECTIVE: To define and explore the rationale for professionally indicated short-term risk-taking in treating adults with borderline personality disorder, and discuss prerequisites for the approach, clinical implementation and medicolegal contexts. CONCLUSION: When prerequisites are met and clinical and medicolegal practice is sound and thorough, taking short-term risk, as part of a comprehensive treatment, is a legitimate professional consideration in working with some adults with borderline personality disorder.

Unearthing the conflicts between carer and custodian: implications of participation in Section 16 hearings under the Mental Health (Compulsory Assessment and Treatment) Act (1992).

Mental health nursing occurs within a legal and ethical framework that presents conflicts between a paternalistic custodial role and an ethical commitment to autonomy. This paper considers the ethical conflict for nurses posed by acting as second health professional at judicial reviews under Section 16 of the Mental Health (Compulsory Treatment and Assessment) Act. Issues of advocacy and paternalism are discussed in light of the conflict between therapeutic and legislated roles. Strategies aimed at protecting the therapeutic relationship are outlined as a response to the current lack of guidelines in this area. Participation in legal processes of committal requires that nurses reflect carefully and critically on the ethical issues raised.

Resident behaviors and characteristics as determinants of quality of residential care: an observational study.

The effects of resident behaviors and resident characteristics on the quantity and quality of care they receive from direct-care staff was examined. Four hundred and fifty-two residents with severe and profound mental retardation and 416 direct care staff members were involved. Naturalistic observations were conducted on direct-care staff behavior, that is, staff-resident initiatives, staff affection, staff communicative behavior, on resident behaviors (i.e., maladaptive, stereotypic, and adaptive behavior, position, attending, and communicative behavior), and on resident characteristics (i.e., gender, age, ambulancy, sensory handicaps, and seizure disorder). By importance, residents' ambulancy/motoric skills, their communicative behavior, and attending behavior accounted for the greatest differences in the quality and quantity of the care they receive from direct-care staff. Given that certain resident characteristics can be ameliorated through training, residents themselves may control, to a certain extent, the care they receive from direct-care staff in residential facilities.

Psychological, social, and health impact of caregiving: a comparison of black and white dementia family caregivers and noncaregivers.

Psychological, social, and health variables were compared in 175 Black and White family caregivers of patients with dementia and 175 Black and White noncaregivers. Caregivers and noncaregivers did not differ within race on demographic variables. Caregiving was associated with increased depression and decreased life satisfaction only in White families. However, caregiving appears to have similar social consequences for Black and White families, including restriction of social activity and increased visits and support by family from outside of the home. Race, but not caregiving, was associated with physical health variables. Methodological issues in comparing well-being in Black and White caregivers, in particular the importance of including noncaregiving comparison subjects are discussed.