2.50
Hdl Handle:
http://hdl.handle.net/10755/163671
Category:
Abstract
Type:
Presentation
Title:
Challenges of raising a child with HIV: A longitudinal view
Author(s):
Mawn, Barbara
Author Details:
Barbara Mawn, Associate Professor, University of Massachusetts-Lowell, Department of Nursing, Princeton, Massachusetts, USA, email: barbara_mawn@uml.edu
Abstract:
This longitudinal qualitative study explored the issues of raising a child with HIV infection from the perspective of the parents and the children themselves. The study incorporated a phenomenological approach to examine this uncharted domain. Ten families participated in this study over a 5-year period. The eligibility criteria for the children at the study outset was that they were between the ages of 3 to 7 years with a diagnosis of HIV infection, but not AIDS. The selection criteria for these "long term survivors" at the time of recruitment also included a relatively intact immune system, as defined by specific age-based criteria. At the onset of the study, pediatric cocktails and protease inhibitors were not yet common place standards of care. Since that time, the outlook for these children has shifted dramatically as a result of improved therapeutic options. This has resulted in a whole new range of dilemmas and challenges for these families. Over the course of 5 years, the researcher completed four open-ended interviews with these families with parents/guardians of the children to date. The interviews lasted from 45 minutes to 3 hours with a one to two year interval in between. Interviews with some of the children themselves are currently in progress and will be competed before the spring of 2002. The families include 5 biological parents, 4 adoptive parents, and one relative with custody. Five of the children are African American, two are of Hispanic ethnicity and three are Caucasian. Interviews were taped recorded, transcribed and analyzed using the strategies proposed by Moustakas. While the predominant theme of normalization persists since the first year of the study, it has evolved over time most significantly in relation to the disclosure process. Over the course of the study, all but one of the children has been told his/her diagnosis. Ongoing concerns related to stigma persist with a tendency to keep this matter "private" as opposed to "a secret". Difficulty with medication adherence as the children age is a second major issue. While parents and children have increasingly been involved with their disease management through viral load tracking and other immune system indicators, the long term management of the infection with numerous medications has become problematic for many. As the children now enter pre-adolescence, a new range of concerns is emerging related to sexual identity and potential transmission of the virus. The study participants shared their stories as well as recommendations for health care providers and other families living with pediatric HIV infection.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2002
Conference Name:
14th Annual Scientific Sessions
Conference Host:
Eastern Nursing Research Society
Conference Location:
University Park, Pennsylvania, USA
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleChallenges of raising a child with HIV: A longitudinal viewen_GB
dc.contributor.authorMawn, Barbaraen_US
dc.author.detailsBarbara Mawn, Associate Professor, University of Massachusetts-Lowell, Department of Nursing, Princeton, Massachusetts, USA, email: barbara_mawn@uml.eduen_US
dc.identifier.urihttp://hdl.handle.net/10755/163671-
dc.description.abstractThis longitudinal qualitative study explored the issues of raising a child with HIV infection from the perspective of the parents and the children themselves. The study incorporated a phenomenological approach to examine this uncharted domain. Ten families participated in this study over a 5-year period. The eligibility criteria for the children at the study outset was that they were between the ages of 3 to 7 years with a diagnosis of HIV infection, but not AIDS. The selection criteria for these "long term survivors" at the time of recruitment also included a relatively intact immune system, as defined by specific age-based criteria. At the onset of the study, pediatric cocktails and protease inhibitors were not yet common place standards of care. Since that time, the outlook for these children has shifted dramatically as a result of improved therapeutic options. This has resulted in a whole new range of dilemmas and challenges for these families. Over the course of 5 years, the researcher completed four open-ended interviews with these families with parents/guardians of the children to date. The interviews lasted from 45 minutes to 3 hours with a one to two year interval in between. Interviews with some of the children themselves are currently in progress and will be competed before the spring of 2002. The families include 5 biological parents, 4 adoptive parents, and one relative with custody. Five of the children are African American, two are of Hispanic ethnicity and three are Caucasian. Interviews were taped recorded, transcribed and analyzed using the strategies proposed by Moustakas. While the predominant theme of normalization persists since the first year of the study, it has evolved over time most significantly in relation to the disclosure process. Over the course of the study, all but one of the children has been told his/her diagnosis. Ongoing concerns related to stigma persist with a tendency to keep this matter "private" as opposed to "a secret". Difficulty with medication adherence as the children age is a second major issue. While parents and children have increasingly been involved with their disease management through viral load tracking and other immune system indicators, the long term management of the infection with numerous medications has become problematic for many. As the children now enter pre-adolescence, a new range of concerns is emerging related to sexual identity and potential transmission of the virus. The study participants shared their stories as well as recommendations for health care providers and other families living with pediatric HIV infection.en_GB
dc.date.available2011-10-27T11:11:43Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:11:43Z-
dc.conference.date2002en_US
dc.conference.name14th Annual Scientific Sessionsen_US
dc.conference.hostEastern Nursing Research Societyen_US
dc.conference.locationUniversity Park, Pennsylvania, USAen_US
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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