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CHRONIC DISEASE IN CHILDHOOD ANDADOLESCENCE: FAMILY BONDSIN THE HEALTHCARE NETWORK1 1 Article extracted from the thesis - Chronic disease in childhood and adolescence: care bonds constituted in the healthcare network, presented to the Pós-Graduação em Enfermagem, Universidade Federal da Paraíba (UFPB), in 2016. Financial support by Conselho Nacional de Desenvolvimento Científico e Tecnológico (Process no. 474762/2013-0).

ABSTRACT

Objective:

to explain how the bonds between the family of the child/adolescent with chronic disease are created and the different services of the health care network, having the Primary Health Care as the organizing center for care.

Method:

qualitative approach study, carried out with ten family members of children/adolescents diagnosed with a chronic disease between May and November 2015. In order to produce the empirical material, the talking map and the ecomap have been used, both adapted in this study, in their homes, located in the area covered by the Family Health Units and in the Family Health Unit itself, according to a family member’s preference. Subsequently, twelve semi-structured interviews were carried out with professionals of the city’s healthcare network - two Family Health Units and two public hospitals. The data were interpreted based on the French line discourse analysis.

Results:

the sense of bonding is related to the care and attention provided by health professionals. The care presented in the textual marks analyzed is a basic concept, which can be paraphrased in its several meanings, such as: accessibility, resoluteness, accountability, humanization, empathy and satisfied expectation.

Conclusion:

it is necessary that each care point of the healthcare network sought by the family is a broad, concrete and lasting reference, especially the Primary Health Care, which should fulfill its role of a care coordinator and caregiver source.

DESCRIPTORS:
Child’s health; Adolescent’s health; Chronic disease; Professional-family relations; Health services.

Universidade Federal de Santa Catarina, Programa de Pós Graduação em Enfermagem Campus Universitário Trindade, 88040-970 Florianópolis - Santa Catarina - Brasil, Tel.: (55 48) 3721-4915 / (55 48) 3721-9043 - Florianópolis - SC - Brazil
E-mail: textoecontexto@contato.ufsc.br