Caregiving process and caregiver burden: Conceptual models to guide research and practice

BACKGROUND: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. DISCUSSION: Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. SUMMARY: This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area

Impacto em cuidadores de idosos com demência atendidos em um serviço psicogeriátrico Impact on caregivers of elderly patients with dementia treated at a psychogeriatric service

OBJETIVO: O número de idosos com demência no Brasil está crescendo rapidamente, e há carência de dados empíricos sobre o impacto em cuidadores informais. O objetivo do estudo foi avaliar o impacto sobre cuidadores informais de pacientes com síndrome demencial. MÉTODOS: Estudo de corte transversal foi conduzido em um serviço psicogeriátrico da cidade de São Paulo, Brasil. Entrevistas estruturadas e semi-estruturadas foram aplicadas em 49 idosos com demência e em seus cuidadores informais. O impacto em cuidadores foi avaliado com a Zarit Burden Interview. RESULTADOS: Os pacientes eram em sua maioria do sexo feminino, apresentavam escore médio no mini exame do estado mental de 12,2 e alta freqüência de transtornos de comportamento. Os cuidadores eram predominantemente mulheres, filhas ou esposas, e co-residiam com seus pacientes. A média de impacto foi de 32,4 (dp: 16,7). As variáveis estatisticamente associadas a níveis de impacto foram o grau de parentesco do cuidador com o paciente (p=0,011), sintomas psiquiátricos do cuidador (p<0,001) e tempo em que o cuidador exercia o papel de cuidar (p=0,001). CONCLUSÕES: Observou-se alta média de impacto em cuidadores de idosos, com demência, que necessitam de atendimento psicogeriátrico. É necessário que os profissionais de saúde estejam aptos a prover suporte adequado a esses cuidadores, com o objetivo de minimizar problemas tanto para pacientes, quanto para cuidadores.<br>OBJECTIVE: There is an increasingly number of demented elderly in Brazil but empirical data on the resulting impact on their informal caregivers is still poorly documented. The purpose of this study was to evaluate the impact on informal caregivers of elderly with dementia. METHODS: A cross-sectional study was conducted at a psychogeriatric unit in the city of São Paulo, Brazil. Structured and semi-structured interviews were administered to 49 elderly patients with dementia and their caregivers. The impact on the caregiver was measured using the Zarit Burden Interview. RESULTS: Most patients were females, had an average score of 12.2 in the Mini Mental State Examination and high incidence of disruptive behavior. Caregivers were predominantly females, generally wives or daughters who lived with their patients. The mean impact score was 32.4 (SD 16.7). Variables statistically associated with the level of impact were: degree of kinship between patient and caregiver (p=0.011); caregiver's psychiatric symptoms (p<0.001), and duration of caregiving role (p=0.001). CONCLUSIONS: A high impact on caregivers of demented elderly who required psychogeriatric intervention was detected. Healthcare providers should be able to provide the needed support to caregivers in order to minimize problems to both patients and their caregivers