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Comparing Psychological Adaptation to having a Disease Gene in Affected Individuals and Unaffected Carrier Parents
Author(s) -
Read Catherine Y.
Publication year - 2006
Publication title -
nursing and health sciences
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.563
H-Index - 47
eISSN - 1442-2018
pISSN - 1441-0745
DOI - 10.1111/j.1442-2018.2006.00272_13.x
Subject(s) - intrusiveness , likert scale , disease , adaptation (eye) , clinical psychology , psychology , perception , psychological adaptation , scale (ratio) , developmental psychology , medicine , pathology , neuroscience , physics , quantum mechanics
The Psychological Adaptation to Genetic Information Scale (PAGIS, Read et al .) has demonstrated that adaptation to genetic information is a multidimensional phenomenon comprised of five factors. The purpose of this web‐based survey was to compare PAGIS scores of individuals with a genetic disease ( n = 137, 49%) with scores of parents who have transmitted a genetic disease to their child ( n = 143, 51%). Each of 26 items is rated on a 1–6 Likert scale, where a higher score represents more positive adaptation. The biological parents had higher scores ( P = 0.004) on the total PAGIS and four of the five subscales (non‐intrusiveness, support, self‐worth, and certainty). There was no significant difference between the two groups on the self‐efficacy subscale. Overall, parents who have transmitted a disease‐related gene to their child demonstrate more positive adaptation than affected individuals to the knowledge that they possess a disease‐related gene. This is not surprising, given the burden of having a genetic disease. However, parents do not score higher on the self‐efficacy subscale, a measure that reflects the client’s general perception of control over consequences of having the gene. The findings reinforce the multidimensional nature of psychological adaptation to genetic information, and suggest that these dimensions will vary among subgroups.