Longitudinality and continuity of care for children and adolescents with chronic diseases

摘要

Objective: To analyze longitudinality and continuity of care provided to children and adolescents with chronic disease, from the family caregiver?′ perception. Methods: This is a qualitative study developed on twelve family members of children and adolescents with chronic diseases, by means of focus groups or semi-structured interviews from February to October 2013, with thematic content analysis. Results: Two issues emerged: the constant search and wait for care in the healthcare system and strategies to overcome them; and longitudinality of care: forging a new path. Conclusion: Meaningful vulnerabilities are observed regarding the programmatic, institutional and personal levels that leave the children and adolescent vulnerable by lack of adequate monitoring and management of the disease in the health care network. Substantial changes in the ways we organize work and actions in the daily routine of the health services are required to meet the needs of this population.