RESUMO
Children with Joubert syndrome have physical and intellectual disabilities. The purpose of this study was to assess the impact of Joubert syndrome on parental burden, coping, and family functioning. Forty-nine primary caregivers were surveyed. Forty-three primary caregivers were mothers and six were fathers; their mean age was 34 years. The following measures were used: Beck Depression Inventory, Child Development Inventory, Caregiver Strain Index, Family Assessment Device, and Ways of Coping Checklist-Revised. The data show that caregiver burden is not related to the severity of the child's illness, but that caregivers report significant burden. Higher burden was associated with the use of palliative coping methods, and family functioning was problematic. The results of this study suggest that for parents of children with Joubert syndrome, degree of parental burden depends more on the parents' coping skills and the level of family functioning rather than on the degree of the child's impairment. These findings highlight the importance of assessing caregiver burden, as well as decreased family functioning or coping abilities, since these problems often can be managed with psychologic intervention.
Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Cerebelo/anormalidades , Efeitos Psicossociais da Doença , Deficiências do Desenvolvimento/psicologia , Relações Familiares , Ataxias Espinocerebelares/psicologia , Atividades Cotidianas/psicologia , Adolescente , Criança , Pré-Escolar , Deficiências do Desenvolvimento/genética , Feminino , Humanos , Lactente , Masculino , Ataxias Espinocerebelares/genética , SíndromeRESUMO
Actual use of a newly established geriatric clinic in a low-cost housing unit was appreciably below projected numbers, even though cost and transportation were removed as barriers to care. In a survey of building occupants, 20% were unaware of the clinic's existence. More than 90% of the occupants did not know clinic hours but a third could identify clinic staff. About half of the occupants had used the clinic, often for minor services. The major reason for lack of use of the clinic was an established pattern of receiving medical care which occupants were reluctant to risk or abandon. Needs must be appropriately assessed before service programs are designed for the elderly. Assumptions may at times be incorrect. A thorough understanding of needs and existing methods of meeting them leads to more appropriately designed programs.