Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families.
Congenital adrenal hyperplasia (CAH), like other genetic conditions, is a relational disease from both the biological and psychosocial perspectives since the diagnosis gives rise to a variety of health, reproductive, and psychosocial implications. It is in these contexts that family communication of...
| Publicado en: | Journal of Genetic Counseling Vol. 26; no. 4; pp. 763 - 776 |
|---|---|
| Autores principales: | , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Aug2017
|
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=123992110&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 123992110 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Aug2017 vid: 26 iid: 4 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 123992110 123992110 123992110 10.1007/s10897-016-0043-x 123992110 ppf: 763 ppct: 13 formats: fmt: @attributes: type: P tig: atl: Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families. aug: au: Abad, Peter Anonuevo, Cora Daack-Hirsch, Sandra Abad, Lorna Padilla, Carmencita Laurino, Mercy affil: College of Nursing , University of the Philippines Manila , Manila Philippines sug: subj: Hyperplasia Family History Hereditary Diseases Filipinos Human Genetic Counseling Philippines Semi-Structured Interview Thematic Analysis ab: Congenital adrenal hyperplasia (CAH), like other genetic conditions, is a relational disease from both the biological and psychosocial perspectives since the diagnosis gives rise to a variety of health, reproductive, and psychosocial implications. It is in these contexts that family communication of genetic information is important to study. Hence, this research aimed to explore genetic information communication in Filipino families affected with CAH. Using a qualitative descriptive design, families with a child affected with CAH were recruited through the CAH parent support group and were interviewed. Semi-structured interviews explored flow and content of genetic information communicated, the meanings the families attach to the communicated information, and the motivating and hindering factors in communication. Thematic analysis was used to analyze the findings. A total of five families participated, which included 11 individuals. Findings revealed that the diagnosis of CAH is not kept secret and it is openly shared with the family. The decision to communicate is influenced by several factors including the family's desire to seek further information about their family history. Initially, the focus of the communicated information is on the health implications and while communication about genetics occurs, this is almost always confined to the immediate family. The mother and grandmother serve as primary communicators in the family. The families have limited understanding of CAH especially its genetic implications including recurrence risk and carrier status. The findings can guide genetic counselors in supporting families in communicating information about CAH with the rest of the family. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
|---|