Neurology Research International / 2011 / Article / Tab 3

Research Article

Quality of Life in Prodromal HD: Qualitative Analyses of Discourse from Participants and Companions

Table 3

Sample positive and negative QOL statements by content domain.

Positive statements PrHDCompanion

EmploymentWell, one thing I did was change careers (to teaching).Teaching… would be more of a positive experience.
SpiritualityMy faith has become stronger because I need that to lean on.She believes in God and lord as savior. She believes that one day everything will be better.
Interpersonal relationshipsI know my husband will take care of me.Well, she told me I’m a support system.
CopingQuality of life is to live life to the fullest and experience most things that they can.Good quality of life is finding satisfaction, I suppose, in the things that you do.

Negative statementsPrHDCompanion

EmploymentI am not going to have a normal retirement age. I’m concerned; I want to make sure I am financially set.He works nine hour days.
Interpersonal relationshipsThe emotional toll of being told (about being gene positive) and then the ramifications for both yourself and your family, is something that for me, at least, sent me into a tailspin for a while.The other thing that really affects quality of life is if you have children, that was … probably the hardest part for my husband, which is the fact we had kids already and when we had children, he had no idea he was at risk.
HD in other peopleI have seen some pretty negative things with this disease, as far as seeing people in my family who have HD.It makes it hard to relate or communicate with my father-in-law because he is so negative or depressed.
CopingI do worry about HD, I’ll admit that.We would both like to have more kids (but will not due to HD).

PrHD: Prodromal for HD. Sample statements within each row are paired, such that they are taken from a single dyad.

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