| Title |
What to Do with a Second Chance in Life? Long‐Term Experiences of Non‐carriers of Huntington's Disease
|
|---|---|
| Published in |
Journal of Genetic Counseling, April 2018
|
| DOI | 10.1007/s10897-018-0257-1 |
| Pubmed ID | |
| Authors |
Elisabeth Winnberg, Ulrika Winnberg, Lilian Pohlkamp, Anette Hagberg |
| Abstract |
Little is known about how people's lives are influenced when going from a 50% risk status of Huntington's disease (HD) to no risk after performing predictive testing. In this study, 20 interviews were conducted to explore the long-term (> 5 years) experiences after receiving predictive test results as a non-carrier of HD. The results showed a broad variety of both positive and negative reactions. The most prominent positive reaction reported was feelings of relief and gratitude, of not carrying the HD mutation for themselves and for their children. Also, the non-carrier status promoted in some individuals' significant life changes such as a wishing to have (more) children, pursuing a career or breaking up from an unhappy relationship. However, negative reactions on their psychological well-being were also described. Some had experienced psychological pressure of needing to do something extraordinary in their lives; others expressed feelings of guilt towards affected or untested siblings, resulting in sadness or clinical depression. The new genetic risk status could generate a need of re-orientation, a process that for some persons took several years to accomplish. The results of the present study show the importance of offering long-term post-result counselling for non-carriers in order to deal with the psychological consequences that may follow predictive testing. |
X Demographics
The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 2 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 2 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 37 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 37 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 8 | 22% |
| Student > Doctoral Student | 5 | 14% |
| Student > Bachelor | 4 | 11% |
| Student > Ph. D. Student | 3 | 8% |
| Researcher | 3 | 8% |
| Other | 1 | 3% |
| Unknown | 13 | 35% |
| Readers by discipline | Count | As % |
|---|---|---|
| Psychology | 7 | 19% |
| Nursing and Health Professions | 5 | 14% |
| Biochemistry, Genetics and Molecular Biology | 4 | 11% |
| Medicine and Dentistry | 4 | 11% |
| Agricultural and Biological Sciences | 2 | 5% |
| Other | 1 | 3% |
| Unknown | 14 | 38% |
Attention Score in Context
This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 09 April 2018.
All research outputs
#17,944,820
of 23,041,514 outputs
Outputs from Journal of Genetic Counseling
#914
of 1,161 outputs
Outputs of similar age
#238,831
of 328,950 outputs
Outputs of similar age from Journal of Genetic Counseling
#23
of 30 outputs
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