Characterization of the motor performance in infants with a diagnosis of Cerebral Palsy in process of rehabilitation: the importance of the proactivity of caregivers

Introduction: The progress in technology, associated to the high survival rate in premature newborn infants in neonatal intensive care units, causes an increase in morbidity. Individuals with CP present complex motor alterations, with primary deficits of abnormal muscle tone affecting posture and voluntary movement, alteration of balance and coordination, decrease of force, and loss of selective motor control with secondary problems of contractures and bone deformities.Objective: The aim of this work is to describe the spontaneous movement and strategies that lead infants with cerebral palsy to move.Methods: Seven infants used to receive assistance at the Essential Stimulation Center of CIAM (Israeli Center for Multidisciplinary Support - Philanthropic Institution), with ages ranging between six and 18 months with diagnosis of Cerebral Palsy (CP) were assessed.Results: The results show the difficulty presented by the infants with respect to the spontaneous motor functions and the necessity of help from the caregiver in order to perform the functional activity (mobility). Prematurity prevails as the major risk factor among the complications.Conclusion: The child development can be understood as a product of the dynamic interactions involving the infant, the family, and the context. Thus, the social interactions and family environment in which the infant live may encourage or limit both the acquisition of skills and the functional independence.

Moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a day care center

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Dimensional analysis of burden in family caregivers of patients with obsessive-compulsive disorder

Aims: Obsessivecompulsive disorder (OCD) also generates emotional burden in the patient's family members, but no study has evaluated the specific dimensions of burden. The objectives were to evaluate the dimensions of the Zarit Burden Interview (ZBI) and possible correlates. Methods: This was a cross-sectional study involving 47 patients and 47 caregivers, using a sociodemographic questionnaire; the ZBI; the Self Reporting Questionnaire; the Family Accommodation Scale; and the YaleBrown ObsessiveCompulsive Scale. The ZBI factor analysis was conducted using Varimax Rotation. Results: Six factors were identified, explaining 74.2% of the total variance: factor 1, interference in the caregiver's personal life (36.6% of the variance); factor 2, perception of patient's dependence (10.8%); factor 3, feelings of irritation or intolerance (9.2%); factor 4, guilt (7.2%); factor 5, insecurity (5.6%); and factor 6, embarrassment (4.8%). The six ZBI factors were associated with greater OCD severity and with greater accommodation to the patient's symptoms, and factors 1, 2, 5 and 6 with caregiver's psychological morbidity. Caregiver's sex (female) was associated with factors 5 and 6, relationship with the patient (being a parent or son/daughter) with factor 5, higher educational level with factor 6, living with the patient with factor 3, worse self-evaluation of health with factors 1, 5 and 6, and occupational status (not working) with factors 1, 2, 5 and 6. Conclusion: The dimensions of burden identified indicate the most affected aspects of a caregiver's life and could guide the planning of more specific interventions. Thus, the caregiver could participate more effectively in the OCD patient's treatment, with a lower impact on his/her life.

Psychopathological features in patients with Parkinson's disease and related caregivers' burden

Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)

Caring for heart transplant recipients: The lived experience of primary caregivers

Objective: To understand the experience of primary caregivers of heart transplant recipients. Methods: A phenomenological approach was used to understand the caregivers' experience of caring for a heart transplant patient. In-depth interviews were conducted with 11 caregivers, in a Brazilian hospital, from December 2008 to March 2009. Results: Following the transplant, caregivers' lives change drastically; their priority becomes providing care for their relative. Despite successful transplant results, the uncertainty about future remains, generating permanent distress. Anxiety is exacerbated by familial or economic problems and, consequently, many participants turn to their local communities for support. Some caregivers learn from the experience and plan return to regular activities. Others feel helpless, unable to overcome personal losses and difficulties. Conclusions: Nurses are ideally placed to lead the way by providing family-centered support and education for caregivers of heart recipients. Listening to the concerns of family caregivers seems to be an essential aspect of effective interventions. © 2013 Elsevier Inc.

General and oral health-related quality of life among caregivers of Parkinson's disease patients

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Vivenciando a sobrecarga ao vir-a-ser um cuidador familiar de pessoa com acidente vascular cerebral (AVC): análise do conhecimento

Trata-se de trabalho do tipo bibliográfico com a finalidade de fazer uma análise temática da produção do conhecimento em periódicos, acerca da sobrecarga em cuidadores familiares de pessoas com Acidente Vascular Cerebral (AVC). O corpus de análise reuniu artigos localizados nas décadas de 80 e 90, a partir das bases de dados Medline, Lilacs e Cinahl. A análise de conteúdo foi o referencial metodológico que permitiu organizar todo o conhecimento, em um corpo de categorias e subcategorias, denominadas: Categoria 1 - As seqüelas do AVC gerando sobrecarga; Categoria 2 - Aspectos gerando sobrecarga, congregando as subcategorias: o isolamento social, as mudanças e as insatisfações conjugais, as dificuldades financeiras e os déficits na saúde física e no autocuidado do cuidador; Categoria 3 - Outras análises relacionadas à sobrecarga em cuidadores familiares.

Heart transplantation experiences: a phenomenological approach

Aim. The aim of this study was to understand the heart transplantation experience based on patients' descriptions.Background. To patients with heart failure, heart transplantation represents a possibility to survive and improve their quality of life. Studies have shown that more quality of life is related to patients' increasing awareness and participation in the work of the healthcare team in the post-transplantation period. Deficient relationships between patients and healthcare providers result in lower compliance with the postoperative regimen.Method. A phenomenological approach was used to interview 26 patients who were heart transplant recipients. Patients were interviewed individually and asked this single question: What does the experience of being heart transplanted mean? Participants' descriptions were analysed using phenomenological reduction, analysis and interpretation.Results. Three categories emerged from data analysis: (i) the time lived by the heart recipient; (ii) donors, family and caregivers and (iii) reflections on the experience lived. Living after heart transplant means living in a complex situation: recipients are confronted with lifelong immunosuppressive therapy associated with many side-effects. Some felt healthy whereas others reported persistence of complications as well as the onset of other pathologies. However, all participants celebrated an improvement in quality of life. Health caregivers, their social and family support had been essential for their struggle. Participants realised that life after heart transplantation was a continuing process demanding support and structured follow-up for the rest of their lives.Conclusion. The findings suggest that each individual has unique experiences of the heart transplantation process. To go on living participants had to accept changes and adapt: to the organ change, to complications resulting from rejection of the organ, to lots of pills and food restrictions.Relevance to clinical practice. Stimulating a heart transplant patients spontaneous expression about what they are experiencing and granting them the actual status of the main character in their own story is important to their care.

Between freedom and reclusion: Social support as a quality-of-life component in the family caregiver-dependent person binomial

This is a qualitative study which uses Grounded Theory as its methodological framework and Symbolic Interactionism as a theoretical base to understand the experience of family caregivers for Cerebrovascular Accident (CVA) patients with regard to social support during their rehabilitation process at home. The components (themes and categories) of the phenomenon assuming home care and specifically the themes assuming care with support and assuming care without support were inter-related for the purpose of comparison and analysis, in order to apprehend how the interaction between them occurred, It was observed that, in addition to the recovery of the patient's autonomy, social support is one of the intervenient components in the quality of life for the family caregiver-disabled person binomial, particularly with respect to the caregiver's freedom to resume his/her life plan.

Estratégias de coping desenvolvidas por cuidadores de idosos portadores de doença crônica

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Entre o fortalecimento e o declínio do vínculo voluntário-idoso dependente em um centro-dia

Trata-se de um estudo qualitativo que utiliza, como referencial teórico, o Interacionismo Simbólico e, como referencial metodológico, a Grounded Theory, visando a: compreender a experiência interacional voluntário-idoso dependente em um Centro-Dia e elaborar um modelo teórico representativo dessa experiência. A estratégia para a obtenção dos dados foi a entrevista não diretiva. Dos resultados, emergiram dois fenômenos: responsabilizando-se pela continuidade do exercício do voluntariado, junto a idosos dependentes, amparado na expectativa reparadora de ex-cuidadores familiares perante uma sociedade com consciência solidária em declínio, e assumindo o papel de voluntário. A experiência nos permitiu ampliar o conhecimento referente ao movimento que eles empreenderam na vivência denominada: entre o fortalecimento e o declínio do vínculo voluntário-idoso dependente em um centro-dia mediado por (des) motivação.

EMOTIONAL BURDEN IN CAREGIEVERS of PATIENTS WITH OBSESSIVE-COMPULSIEVE DISORDER

The objective of this study was to evaluate the emotional burden, psychological morbidity, and level of family accommodation in caregivers of obsessive-compulsive disorder (OCD) patients, according to sociodemographic and clinical factors. Methods: Fifty Brazilian DSM-IV OCD patients and their caregivers were evaluated using the Family Accommodation Scale, the Zarit Burden Interview (ZBI), the Self-Report Questionnaire (caregivers), the Yale-Brown Obsessive-Compulsive Scale, and the Beck Depression Inventory (patients). Most caregivers (80%) were aged between 30 and 59 years and lived with the patient (88%). Results: Forty-two percent presented a common mental disorder and their mean ZBI score was 28.9. Family accommodation was moderate in 26% and severe or very severe in 24%. Caregivers' levels of psychological morbidity, accommodation, and emotional burden were associated with each other and with the severity of patient obsessive-compulsive and depressive symptoms. Conclusions: The results suggest that caregivers of OCD patients have important levels of burden and psychological morbidity and should receive orientation and support to minimize this emotional impact. Depression and Anxiety 25:1020-1027, 2008. (C) 2008 Wiley-Liss, Inc.

Prevalence and Correlates of Cognitive Impairment among the Elderly in a General Hospital

Aims: To estimate the prevalence and correlates of cognitive impairment (CI) among the elderly in a general hospital. Methods: A cross-sectional study, including 200 Brazilian inpatients aged 60 years or over, using the Mini Mental State Examination to evaluate CI (dependent variable), and the Geriatric Depression Scale and the Katz and Lawton Index to evaluate basic (BADL) and instrumental activities of daily living (IADL). Results: 56% were women, 29% were dependent for BADL and 77.5% for IADL. The prevalence of CI was 29% and, in the logistic regression, it remained associated with higher age (1 74 years old), number of previous hospitalizations (1 3) and dependency for BADL (being dependent raised the odds of being cognitively impaired). Conclusions: It is essential to train the hospital staff to properly assist these patients, and to orient and support their caregivers. Copyright (C) 2009 S. Karger AG, Basel

Sentimentos e percepções de puérperas com relação à assistência prestada pelo serviço materno-infantil de um hospital universitário

OBJETIVOS: avaliar percepções e sentimentos de puérperas adultas e adolescentes, relacionados ao filho e a assistência materno-infantil, em hospital universitário de nível terciário. MÉTODOS: estudo transversal, envolvendo 180 puérperas, no Alojamento Conjunto (AC) e no Berçário Interno (BI) do Hospital das Clínicas da Faculdade de Medicina de Botucatu , entrevistadas no segundo e terceiro dia pós-parto e distribuídas em três grupos: adultas primíparas, adultas multíparas e adolescentes. Para comparação entre grupos e locais de internação utilizou-se o chi2 ou teste de Fisher. RESULTADOS: ultrasom obstétrico e cardiotocografia tiveram impacto positivo na emoção materna. Houve pouca diferença entre os grupos quanto aos sentimentos antes e após o parto, sendo felicidade, amor, responsabilidade, ansiedade e medo os mais freqüentes. A culpa predominou nas adolescentes do BI. As percepções relacionadas ao filho, a avaliação da assistência e equipe, não diferiram entre adultas e adolescentes. Nas duas enfermarias o relacionamento entre mães e cuidadores foi bom, as mães mostraram-se satisfeitas com a equipe e a assistência, mas o aleitamento materno foi pouco valorizado e poucas mães conheciam o médico. CONCLUSÕES: está ocorrendo um processo de humanização na assistência materno-infantil deste hospital universitário, mas alguns aspectos precisam ser melhorados, especialmente a valorização do aleitamento materno e a individualização no contato médico-paciente.