RESUMO
Decision making about interventions for children and young people with life-limiting illnesses is fraught with difficulties but faced regularly by staff in children's hospices and paediatric wards. The perspectives of the child, various family members and professionals may all be different. The process of discussion and negotiation and the mechanism by which a decision is arrived at is complex. Various laws have recently changed in the UK that have an impact on this process. This article discusses several clinical scenarios to better understand these decisions and the effects of changes in the law. It also discusses how multidisciplinary teams in children's hospices (and other supportive clinical systems) can best support young people and families with and without recourse to the law.
Assuntos
Tomada de Decisões/ética , Consentimento Livre e Esclarecido/legislação & jurisprudência , Relações Interpessoais , Competência Mental , Assistência Terminal/legislação & jurisprudência , Adolescente , Fatores Etários , Atitude do Pessoal de Saúde , Criança , Defesa da Criança e do Adolescente , Desenvolvimento Infantil , Pré-Escolar , Comunicação , Compreensão , Estado Terminal/terapia , Revelação , Saúde da Família , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Direitos Humanos , Humanos , Lactente , Legislação Médica , Masculino , Relações Pais-Filho , Pais/psicologia , Assistência Terminal/ética , Assistência Terminal/psicologia , Reino Unido , Suspensão de TratamentoRESUMO
This study assessed the psychosocial adjustment of 31 childhood cancer patients five years after diagnosis compared with their school peers. The children were aged 8 to 18 years at the time of the study. No significant difference was found in self-rated measures of anxiety and self-esteem. However, there were significant differences in teacher ratings of concentration, academic progress, and popularity with peers and in parent and teacher ratings of behavioural adjustment (Rutter Scales A and B), indicating that the survivors of childhood cancer were at increased risk of problems. Relationships between behavioural adjustment scores and child, family, and illness variables were investigated within the cancer-survivor group. No significant relationship was found with illness variables or social class. Significant associations were found between behavioural adjustment and parental psychological distress, parental coping strategies, children's perceptions of their own scholastic competence, and their relationships with peers. In addition, children who had shown considerable problems in school work one year after diagnosis were more at risk for behavioural problems at this later state. The findings have implications for the provision of support to childhood cancer patients, their families, and their teachers that may help to prevent later problems in adjustment.
Assuntos
Adaptação Psicológica , Neoplasias/psicologia , Sobreviventes/psicologia , Logro , Adolescente , Ansiedade , Criança , Transtornos do Comportamento Infantil/psicologia , Família/psicologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Autoimagem , Autoavaliação (Psicologia) , Inquéritos e QuestionáriosRESUMO
The paper reports the results of detailed interviews with parents of Down's syndrome infants shortly after their being informed of the diagnosis. It reviews previous studies and confirms a number of findings. 1. The majority of parents wish to be told of the diagnosis as soon as possible and with the spouse present. 2. They do not automatically resent the 'teller'. 3. They wish to be told directly but sympathetically, in private and have access to the baby. 4. Several interviews are needed at short intervals following the initial telling for parents to ask further questions and to assimilate more information about their child's condition.
