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.

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.

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.

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.

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.

Vivência do cuidador familiar de paciente com câncer

Pós-graduação em Enfermagem (mestrado profissional) - FMB

A inclusão escolar de crianças com paralisia cerebral: a relação das características dos cuidadores familiares implicadas neste processo

Pós-graduação em Educação - FFC

Independência funcional de idosos no pós-operatório de cirurgia de fêmur proximal: papel do cuidador

Pós-graduação em Saúde Coletiva - FMB

A experiência do idoso com fratura de fêmur

Pós-graduação em Saúde Coletiva - FMB

A experiência do cuidador familiar e da equipe multiprofissional com processo de cuidar de doentes renais crônicos em hemodiálise

Pós-graduação em Enfermagem (mestrado profissional) - FMB

Perfil de pacientes portadores de gastrostomia e o papel dos cuidadores no domicílio

Pós-graduação em Enfermagem (mestrado profissional) - FMB

Participação da família no tratamento de paciente em diálise peritoneal

Dramatic changes occur in the lives of patients on peritoneal dialysis and his family life, changing lifestyle, professional and social activities. Considering the important role of family in treatment, is crucial for nurses to know how these families perceive their role as caregivers and their difficulties and needs, in the process of peritoneal dialysis. The approach chosen for the study was the phenomenological method, based on Merleau-Ponty, who proposes to understand the human experience, from the description of those who lived it. The study findings show that in the beginning of treatment, family members, feel impacted with the disease severity and eager to become responsible for maintenance treatment, fearing not match the expectations.Guided by staff, appear confident in taking care and deal with the difficulties and complications of treatment, supported by professionals. However, resent the great changes in their social activities and work, his life turns out to be quite limited, due to the dedication to a sick family member. Many feel overwhelmed because they are not supported by other family members. Some envision a future outlook for renal transplant, others seem skeptical, given the long waiting list, especially when advanced age of the sick family member. These results suggest the need for individualized attention to family caregivers, and to encourage the family to organize itself and develop a joint work. In this sense, the design of health care, taking care with the focus of the family, it seems highly appropriate in preparing the plan of family orientation, this is defined as a dynamic unity, which, working in harmony, can contribute positively in the treatment of health a sick member

O cuidador de paciente com neoplasia cerebral maligna primária: os desafios do cuidado

Patients with primary malignant brain tumor endure several motor and cognitive dysfunctions, demanding the presence of a caregiver even more because the time necessary for their assistance increases considerably. Usually this task is performed by a family relative, whose activities include taking care of the patient’s personal hygiene, escorting them to medical appointments, managing their money and performing their housework. All of this overwhelms the caregiver both physical and psychologically. This bibliographic research intends to analyze the role in which a caregiver plays in the quality of life of those kinds of patients, the complications of such task, the caregivers’ needs and the daily life of those terminal patients. It was used CAPES, PubMed and Google Academic databases for researching articles related to family caregivers who assisted adult patients with primary malignant brain tumor. The study concluded that being a caregiver of patients in such conditions harms one’s quality of life, with consequences such as stress, insomnia, financial problems and lack of social support. Theirs needs include: having someone to talk to about the matter, attending programs for reducing stress and increasing their knowledge about the disease. In advanced phases of the condition, the patient shows great mobility problems, aphasia and regular seizures, which end up overwhelming the caregiver. The level of quality of life found was above other types of cancer’s caregivers. Therefore, they represent a group with special needs, which should be especially handled by health professionals.

A intersetorialidade das políticas de saúde e de assistência social no sistema de atenção domiciliar em Franca/SP

Pós-graduação em Serviço Social - FCHS