Genetic disease in the family: trajectories and experiences in public health services
Abstract Objective: To identify the trajectories and experiences of families of children with genetic diseases in health services. Method: A qualitative study, with data collected through interviews with 15 families and caregivers of children with Genetic Disease, living in the northern region of...
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| Format: | Article |
| Language: | English |
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Universidade Federal do Rio de Janeiro
2019-10-01
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| Series: | Escola Anna Nery |
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| Online Access: | http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1414-81452020000100204&tlng=en |
| _version_ | 1818889296241754112 |
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| author | Laura Helena Gerber Franciscatto Mara Regina Santos da Silva Alessandro Marques dos Santos Adriane Maria Netto de Oliveira Keterlin Salvador |
| author_facet | Laura Helena Gerber Franciscatto Mara Regina Santos da Silva Alessandro Marques dos Santos Adriane Maria Netto de Oliveira Keterlin Salvador |
| author_sort | Laura Helena Gerber Franciscatto |
| collection | DOAJ |
| description | Abstract Objective: To identify the trajectories and experiences of families of children with genetic diseases in health services. Method: A qualitative study, with data collected through interviews with 15 families and caregivers of children with Genetic Disease, living in the northern region of Rio Grande do Sul. Interviews were conducted from March to May 2018. Data analysis was based on thematic analysis. Results: A genetic disease diagnosis led to families' changes due to the demands of treatment, and also the needs of the child for being met by health services. To access specialized services, some families needed to travel to referral centers in larger cities. Families experienced difficulties such as unprepared health professionals, lack of organization of services, judicialization of resources, and need for structured Health Care Networks. Conclusion: The professional has the fundamental role of providing families with access to information and are responsible for decision making and for the organization and management of health and nursing services to meet the demands imposed on the individual and the family by the genetic disease. |
| first_indexed | 2024-12-19T17:06:46Z |
| format | Article |
| id | doaj.art-e19800e71b9e46bea82f51cb8ee02d68 |
| institution | Directory Open Access Journal |
| issn | 2177-9465 |
| language | English |
| last_indexed | 2024-12-19T17:06:46Z |
| publishDate | 2019-10-01 |
| publisher | Universidade Federal do Rio de Janeiro |
| record_format | Article |
| series | Escola Anna Nery |
| spelling | doaj.art-e19800e71b9e46bea82f51cb8ee02d682022-12-21T20:13:08ZengUniversidade Federal do Rio de JaneiroEscola Anna Nery2177-94652019-10-0124110.1590/2177-9465-ean-2019-0128Genetic disease in the family: trajectories and experiences in public health servicesLaura Helena Gerber Franciscattohttps://orcid.org/0000-0001-5972-7085Mara Regina Santos da Silvahttps://orcid.org/0000-0002-7385-7609Alessandro Marques dos Santoshttps://orcid.org/0000-0002-0872-5925Adriane Maria Netto de Oliveirahttps://orcid.org/0000-0001-9422-423XKeterlin Salvadorhttps://orcid.org/0000-0002-4886-1876Abstract Objective: To identify the trajectories and experiences of families of children with genetic diseases in health services. Method: A qualitative study, with data collected through interviews with 15 families and caregivers of children with Genetic Disease, living in the northern region of Rio Grande do Sul. Interviews were conducted from March to May 2018. Data analysis was based on thematic analysis. Results: A genetic disease diagnosis led to families' changes due to the demands of treatment, and also the needs of the child for being met by health services. To access specialized services, some families needed to travel to referral centers in larger cities. Families experienced difficulties such as unprepared health professionals, lack of organization of services, judicialization of resources, and need for structured Health Care Networks. Conclusion: The professional has the fundamental role of providing families with access to information and are responsible for decision making and for the organization and management of health and nursing services to meet the demands imposed on the individual and the family by the genetic disease.http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1414-81452020000100204&tlng=enGeneticsNursingHealth servicesFamilyQualitative Research |
| spellingShingle | Laura Helena Gerber Franciscatto Mara Regina Santos da Silva Alessandro Marques dos Santos Adriane Maria Netto de Oliveira Keterlin Salvador Genetic disease in the family: trajectories and experiences in public health services Escola Anna Nery Genetics Nursing Health services Family Qualitative Research |
| title | Genetic disease in the family: trajectories and experiences in public health services |
| title_full | Genetic disease in the family: trajectories and experiences in public health services |
| title_fullStr | Genetic disease in the family: trajectories and experiences in public health services |
| title_full_unstemmed | Genetic disease in the family: trajectories and experiences in public health services |
| title_short | Genetic disease in the family: trajectories and experiences in public health services |
| title_sort | genetic disease in the family trajectories and experiences in public health services |
| topic | Genetics Nursing Health services Family Qualitative Research |
| url | http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1414-81452020000100204&tlng=en |
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