2.50
Hdl Handle:
http://hdl.handle.net/10755/163689
Category:
Abstract
Type:
Presentation
Title:
Parenting the child living with hypoplastic left heart syndrome
Author(s):
Mott, Sandra
Author Details:
Sandra Mott, Associate Professor, Boston College, School of Nursing, West Bridgewater, Massachusetts, USA, email: sandr.mott.1@bc.edu
Abstract:
What is it like to live every day with a child whose heart has been reconfigured and who is sensitive to changes in fluid intake, air quality, and activity-related energy expenditure? What can experienced parents tell us about daily life and health maintenance that can be shared with similar families in the future? Since the population of children living with hypoplastic left heart syndrome (HLHS) is both new and somewhat small, there are few research studies that look at the impact of the diagnosis and the demands of its treatment on the day-to-day parenting role. Because quality survival is relatively recent, parents have few role models and nursing has little information and limited theory to share with parents as they search for guidance. For nursing to be truly effective in the role of providing information and support that facilitates parental caregiving skills for these children, it is imperative to learn from experienced parents as they share their perspectives, experiences and accounts of everyday happenings and decisions as they parent their children with HLHS. Using a qualitative descriptive methodology, the in-depth interviews revealed that parents modified and adapted their parenting behaviors in response to their experiences caring for their child born with HLHS. The initial study addressed the research question, What is the nature of parenting a child who has chronic cardiac disease from HLHS but who presently is healthy and engaging in developmentally appropriate activities? As the data were read, compared, categorized, and inductively conceptualized and abstracted, two concepts emerged related to the descriptions of their current parenting behaviors. The first concept was labeled, limiting the intrusiveness of the disease. The strategies used by the parents were assessing, modifying, and protecting. The second concept, living day-to-day was managed by using the strategies of uncertain hope and cautious optimism. Of particular note, however, was the time and energy these parents spent in reliving the initial decision making process to have the staged surgeries and then the consequent demands this decision made on their lives. It seemed that the basis for their current parenting behaviors was directly tied to that initial decision and its consequences. Only by revisiting the past were they able to explain or justify the present. Therefore, a secondary analysis of the data is being done to answer the research question, What was the process by which the identified parenting behaviors emerged?
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.titleParenting the child living with hypoplastic left heart syndromeen_GB
dc.contributor.authorMott, Sandraen_US
dc.author.detailsSandra Mott, Associate Professor, Boston College, School of Nursing, West Bridgewater, Massachusetts, USA, email: sandr.mott.1@bc.eduen_US
dc.identifier.urihttp://hdl.handle.net/10755/163689-
dc.description.abstractWhat is it like to live every day with a child whose heart has been reconfigured and who is sensitive to changes in fluid intake, air quality, and activity-related energy expenditure? What can experienced parents tell us about daily life and health maintenance that can be shared with similar families in the future? Since the population of children living with hypoplastic left heart syndrome (HLHS) is both new and somewhat small, there are few research studies that look at the impact of the diagnosis and the demands of its treatment on the day-to-day parenting role. Because quality survival is relatively recent, parents have few role models and nursing has little information and limited theory to share with parents as they search for guidance. For nursing to be truly effective in the role of providing information and support that facilitates parental caregiving skills for these children, it is imperative to learn from experienced parents as they share their perspectives, experiences and accounts of everyday happenings and decisions as they parent their children with HLHS. Using a qualitative descriptive methodology, the in-depth interviews revealed that parents modified and adapted their parenting behaviors in response to their experiences caring for their child born with HLHS. The initial study addressed the research question, What is the nature of parenting a child who has chronic cardiac disease from HLHS but who presently is healthy and engaging in developmentally appropriate activities? As the data were read, compared, categorized, and inductively conceptualized and abstracted, two concepts emerged related to the descriptions of their current parenting behaviors. The first concept was labeled, limiting the intrusiveness of the disease. The strategies used by the parents were assessing, modifying, and protecting. The second concept, living day-to-day was managed by using the strategies of uncertain hope and cautious optimism. Of particular note, however, was the time and energy these parents spent in reliving the initial decision making process to have the staged surgeries and then the consequent demands this decision made on their lives. It seemed that the basis for their current parenting behaviors was directly tied to that initial decision and its consequences. Only by revisiting the past were they able to explain or justify the present. Therefore, a secondary analysis of the data is being done to answer the research question, What was the process by which the identified parenting behaviors emerged?en_GB
dc.date.available2011-10-27T11:12:04Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:12:04Z-
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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