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Full-Text Articles in Medicine and Health Sciences
Caregiving By Teens For Family Members With Huntington Disease, Janet Williams, Lioness Ayres, Janet Specht, K. Sparbel, M. Klimek
Caregiving By Teens For Family Members With Huntington Disease, Janet Williams, Lioness Ayres, Janet Specht, K. Sparbel, M. Klimek
Lioness Ayres
The purpose of this report is to describe caregiving by teens for family members with Huntington disease (HD). Thirty-two teens in HD families in the United States and Canada participated in focus groups from 2002 to 2005 in a study to identify concerns and strategies to manage concerns. An unexpected finding was 24 (77%) described caregiving activities. Descriptive analysis of caregiving statements identified themes of Tasks and Responsibilities, Subjective Burden, Caregiving in Context of Personal Risk for HD, and Decisional Responsibility. Teens took an active part in nearly all aspects of care with the exception of contacting health care providers …
Explanations Of Risk In Families Without Identified Mutations For Hereditary Nonpolyposis Colorectal Cancer, Anne Ersig, Lioness Ayres, D. Hadley, L. Koehly
Explanations Of Risk In Families Without Identified Mutations For Hereditary Nonpolyposis Colorectal Cancer, Anne Ersig, Lioness Ayres, D. Hadley, L. Koehly
Lioness Ayres
Purpose: Genetic testing for hereditary forms of cancer does not always identify a causative mutation. Little is known about personal or family response to these indeterminate results when a hereditary form of cancer is suspected. This study explored thoughts about and responses to risk for hereditary nonpolyposis colorectal cancer (HNPCC) when a family member has received indeterminate genetic test results. Design: In this qualitative study, data were gathered from index cases who received indeterminate genetic test results through a longitudinal study offering genetic counseling and testing for HNPCC. First-degree relatives of these indeterminate index cases were also invited to participate …
Family Response To A Child's Chronic Illness: A Description Of Major Defining Themes, K. Knafl, A. Gallo, B. Breitmayer, L. Zoeller, Lioness Ayres
Family Response To A Child's Chronic Illness: A Description Of Major Defining Themes, K. Knafl, A. Gallo, B. Breitmayer, L. Zoeller, Lioness Ayres
Lioness Ayres
No abstract provided.
'I'M Like You': Establishing And Protecting A Common Ground In Focus Groups With Huntington Disease Caregivers... With Review By Spencer L, Janet Williams, Lioness Ayres, L. Spencer
'I'M Like You': Establishing And Protecting A Common Ground In Focus Groups With Huntington Disease Caregivers... With Review By Spencer L, Janet Williams, Lioness Ayres, L. Spencer
Lioness Ayres
Focus group research reflects content contributed by participants and the influence of interactions among participants. Analysis of interactions provides insights into focus group dynamics and the contextual meaning of focus group topics. The aim of this report is to analyse interactions that establish or protect a common ground in focus groups of family members caring for adults with Huntington disease (HD). HD tends to stigmatise persons with the disease, as well as their families. Thus, many of the topics in these groups were sensitive. Establishing a common ground was of paramount importance to group members. Participants used interactional processes that …