TY - JOUR
T1 - Genetic counselling in parents of children with congenital heart disease significantly improves knowledge about causation and enhances psychosocial functioning
AU - Blue, Gillian M.
AU - Kasparian, Nadine A.
AU - Sholler, Gary F.
AU - Kirk, Edwin P.
AU - Winlaw, David S.
PY - 2015/1/15
Y1 - 2015/1/15
N2 - Background One of the key questions asked by parents of children with congenital heart disease (CHD) is 'why' and 'how did this happen?'. Receiving more information in response to these questions is therefore important to parents. This study sought to assess the efficacy of individualised genetic counselling sessions in improving knowledge of causation and psychosocial functioning in parents of children with CHD.Methods Parents of children undergoing surgery for CHD were offered individualised genetic counselling during their child's hospital admission. Assessments occurred at three time-points (immediately pre-, immediately post-, and two months post-session) using questionnaires comprising a purpose-designed knowledge measure, as well as validated psychological measures.Results Of the 94 participants approached, 57 attended the genetic counselling session (participation rate = 60.6%). Knowledge scores for the participants who completed all three questionnaires improved significantly from pre- (x¯ = 7.38/16, SD = 3.53) to post-session (x¯ = 13.33/16, SD = 2.82) (p < 0.001). Participants retained this knowledge over time, with no changes in scores at two-month follow-up (p = 0.11). Perceived personal control also increased post-session, while reported guilt, shame, depression, anxiety and stress decreased. Overall satisfaction was high, with 96.4% of participants indicating they would recommend this service to other parents of children with CHD.Conclusion Individualised genetic counselling sessions were highly beneficial to parents of children with CHD in regards to improving knowledge about the causes of CHD and enhancing psychosocial functioning, and should be considered as part of 'best care' practices.
AB - Background One of the key questions asked by parents of children with congenital heart disease (CHD) is 'why' and 'how did this happen?'. Receiving more information in response to these questions is therefore important to parents. This study sought to assess the efficacy of individualised genetic counselling sessions in improving knowledge of causation and psychosocial functioning in parents of children with CHD.Methods Parents of children undergoing surgery for CHD were offered individualised genetic counselling during their child's hospital admission. Assessments occurred at three time-points (immediately pre-, immediately post-, and two months post-session) using questionnaires comprising a purpose-designed knowledge measure, as well as validated psychological measures.Results Of the 94 participants approached, 57 attended the genetic counselling session (participation rate = 60.6%). Knowledge scores for the participants who completed all three questionnaires improved significantly from pre- (x¯ = 7.38/16, SD = 3.53) to post-session (x¯ = 13.33/16, SD = 2.82) (p < 0.001). Participants retained this knowledge over time, with no changes in scores at two-month follow-up (p = 0.11). Perceived personal control also increased post-session, while reported guilt, shame, depression, anxiety and stress decreased. Overall satisfaction was high, with 96.4% of participants indicating they would recommend this service to other parents of children with CHD.Conclusion Individualised genetic counselling sessions were highly beneficial to parents of children with CHD in regards to improving knowledge about the causes of CHD and enhancing psychosocial functioning, and should be considered as part of 'best care' practices.
KW - Congenital heart disease
KW - Genetic counselling
KW - Genetics education
KW - Guilt and shame
KW - Intervention
KW - Psychological stress
UR - http://www.scopus.com/inward/record.url?scp=84916237529&partnerID=8YFLogxK
U2 - 10.1016/j.ijcard.2014.10.119
DO - 10.1016/j.ijcard.2014.10.119
M3 - Article
C2 - 25464235
AN - SCOPUS:84916237529
SN - 0167-5273
VL - 178
SP - 124
EP - 130
JO - International Journal of Cardiology
JF - International Journal of Cardiology
ER -