Experiences of Teens Living in the Shadow of Huntington Disease

Sparbel, Kathleen J.H.; Driessnack, Martha; Williams, Janet K.; Schutte, Debra L.; Tripp–Reimer, Toni; McGonigal-Kenney, Meghan; Jarmon, Lori; Paulsen, Jane S.

doi:10.1007/s10897-008-9151-6

Cited by 40 publications

(55 citation statements)

References 29 publications

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“…The design of the larger study is reported in more detail elsewhere (Sparbel et al, 2008; Williams & Ayres, 2007; Williams et al, 2007; Williams et al, 2008). In brief, the larger study was a two phase mixed methods study in which the conduct of focus groups and development of a family concerns and strategies survey were completed in the first phase, and the survey was distributed and analyzed in the second phase.…”

Section: Methodsmentioning

confidence: 99%

“…Teens in the focus groups had not met each other before the focus group meetings. Additional sample details are noted elsewhere (Sparbel et al, 2008). …”

Section: Methodsmentioning

confidence: 99%

“…Analysis took place in three phases. As described elsewhere (Sparbel et al, 2008), content analysis methods were followed to code the narrative data (Knafl & Webster, 1988; Sandelowski, 2000). First, each transcript was inspected to identify information teens provided that related directly to caregiving.…”

Section: Methodsmentioning

confidence: 99%

“…Teens who are biologically related to persons with HD may be living in the awareness phase of risk for a genetic illness. They have some knowledge of the possibility that they will develop this condition in the future, while also functioning in the long-term adaptation phase as caregivers of a person in their family who has the condition (Sparbel et al, 2008). …”

Section: Introductionmentioning

confidence: 99%

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Caregiving by Teens for Family Members With Huntington Disease

et al. 2009

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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 and attending doctors’ appointments. Some described emotional distress, and many provided care knowing they had the potential to develop HD. Teens recognized the need for decisions but lacked the authority to make these decisions. Findings may be relevant for other teens who strive to meet caregiver and student roles and developmental tasks.

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Section: Methodsmentioning

confidence: 99%

“…Teens in the focus groups had not met each other before the focus group meetings. Additional sample details are noted elsewhere (Sparbel et al, 2008). …”

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Caregiving by Teens for Family Members With Huntington Disease

et al. 2009

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“…They sometimes have an adult role, could be expected to provide care for the parent [12] and could feel responsible for the family's functioning [13]. A recent survey showed that 7% of the 2424 responding adolescents in Sweden were involved in extensive care of a person close to them [14].…”

Section: Introductionmentioning

confidence: 99%

Impact of a Parent’s Neurodegenerative Disease and Care on the Daily Life of Children

Ferm¹,

Nilsson²,

Nolbris³

et al. 2018

Caregiving and Home Care

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The purpose of the study described in this chapter was to explore children's and parents' views of how a neurodegenerative disease in a parent influences the daily life of the child. Focus groups were carried out with nine families of children, adolescents and parents with and without Parkinson's disease, Multiple Sclerosis (MS) and Huntington's disease. Each group met twice over a period of 4 weeks. Data were transcribed and analysed using qualitative content analysis. The results explored the meaning of the two categories: consequences in daily life and influence of disease on children. These categories emerged out of the following subcategories: economy, responsibility, living with personal assistants, being and feeling, being different, activities and the symptoms of the disease. A parent's disease has an impact on the individual child who is affected emotionally and psychologically, and with regard to practical issues and basic needs. The parent's and the family's needs for support create a conflict between the child's rights for health, well-being and privacy and the needs and rights of the parent with the disease for high quality care. The negative impacts also relate to lack of information and knowledge about the disease and the family's need for economic support.

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When to tell and test for genetic carrier status: Perspectives of adolescents and young adults from fragile X families

Wehbe

Spiridigliozzi

Heise

et al. 2009

American J of Med Genetics Pt A

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We report here our findings from adolescent and young adult females (ages 14-25) with a family history of fragile X syndrome regarding their perceptions of the optimal ages for 1) learning fragile X is inherited, 2) learning one could be a carrier for fragile X, and 3) offering carrier testing for fragile X. Three groups were enrolled: those who knew they were carriers or noncarriers and those who knew only they were at-risk to be a carrier. Only two of the 53 participants felt that offering carrier testing should be delayed until the age of 18 years. Participants who knew only that they were atrisk to be a carrier provided older optimal ages for offering carrier testing than those who knew their actual carrier status. Participants did not express regret or negative emotions about the timing of the disclosure of genetic risk information regarding their own experiences. Participants' reasoning behind reported ages for informing about genetic risk and offering carrier testing varied depending on what type of information was being disclosed, which carrier status group the participant belonged to, and the preferred age for learning the information. Study findings suggest that decisions regarding the timing to inform about genetic risk and offer testing should be tailored to the individual needs of the child and his/her family.

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Experiences of Teens Living in the Shadow of Huntington Disease

Cited by 40 publications

References 29 publications

Caregiving by Teens for Family Members With Huntington Disease

Caregiving by Teens for Family Members With Huntington Disease

Impact of a Parent’s Neurodegenerative Disease and Care on the Daily Life of Children

When to tell and test for genetic carrier status: Perspectives of adolescents and young adults from fragile X families

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