Gillian M Blue1, Nadine A Kasparian2, Gary F Sholler1, Edwin P Kirk3, David S Winlaw4. 1. Kids Heart Research, The Children's Hospital at Westmead, Sydney, Australia; The Heart Centre for Children, The Children's Hospital at Westmead, Sydney, Australia; Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Australia. 2. The Heart Centre for Children, The Children's Hospital at Westmead, Sydney, Australia; Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia. 3. Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia; Department of Medical Genetics, Sydney Children's Hospital, Sydney, Australia. 4. Kids Heart Research, The Children's Hospital at Westmead, Sydney, Australia; The Heart Centre for Children, The Children's Hospital at Westmead, Sydney, Australia; Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Australia. Electronic address: david.winlaw@health.nsw.gov.au.
Abstract
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.
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.