Parental coping after their baby’s diagnosis of congenital heart disease

Masters Research - Master of Clinical Psychology (MClinPsych)Scope and Purpose: Receiving a diagnosis of complex congenital heart disease (CHD) for one’s baby is a highly stressful and potentially traumatic experience for parents and has the potential to have significant and long-lasting psychological effects (Rychik et al., 2013). Due to recent technological advancements it is now possible for mothers and fathers to receive a diagnosis during pregnancy (fetal diagnosis) or postpartum (postnatal diagnosis). Currently, the literature is limited in the exploration of the similarities and differences in psychological outcomes and experiences amongst parents as a result of time of diagnosis and gender. Further, little is known about the coping strategies employed by mothers and fathers as they attempt to cope with such a diagnosis. Consequently, the present study had three main aims. First, to determine whether the stress and coping model proposed by Lazarus and Folkman (1984) can be applied to gain an understanding of parental coping in response to receiving their baby’s diagnosis of complex CHD. Second, to explore thematic similarities and differences in the coping strategies employed by parents who received a fetal diagnosis with parents who received a postnatal diagnosis. Third, to explore thematic similarities and differences in the coping strategies utilised by mothers compared with fathers. Methodology: A cross-sectional, mixed methods study design was utilised and data was taken from a larger study, previously conducted. Participants included mothers and fathers of a baby diagnosed with complex CHD during pregnancy (fetal diagnosis) or within the first six months of life (postnatal diagnosis). Participants were identified through the cardiology databases of the Sydney Children’ Hospital Network, including the Children’s Hospital at Westmead and the Sydney Children’s Hospital, Randwick. In this sub-study, parents who completed their interview after the birth of their baby and before their infant reached 6 months of age were included. Participants were first required to complete a semi-structured interview with Dr Nadine Kasparian, which was audio-recorded and transcribed verbatim. Two weeks after completing the interview, participants were then asked to complete a brief self-report questionnaire, from which, this study accessed demographic and medical information. Transcripts were coded utilising a modified analytic induction approach with the assistance of the qualitative data analysis software, <i>QSR NVivo10</i>. Results: In total, twenty-five parents of fifteen babies completed twenty-two semi-structured interviews, with three couples choosing to complete the interview together. The sample consisted of six mothers and six fathers who received a fetal diagnosis and nine mothers and four fathers who received a postnatal diagnosis. After applying Lazarus and Folkman’s model of stress and coping (1984), each of the three types of coping proposed (problem-focused, emotion-focused, meaning-focused) were evident within the narratives of participants. One main theme identified that could not be categorised within the model was parental pride and focus on the baby. In the exploration of differences based on time of diagnosis it was found that parents who received a fetal diagnosis differed from parents who received a postnatal diagnosis in their level of preparedness, the nature and quality of distancing, meaning-focused coping and sources of reassurance. In comparing mothers and fathers, differences arose in the use of confrontive coping, as mothers more frequently reported fighting to be close to their baby, and in the application of emotion-focused coping, as mothers more frequently reported using emotion-focused coping such as drawing upon social support. A larger proportion of mothers than fathers were also found to engage in meaning-focused coping, finding the benefit in the stressful situation that was their baby’s condition. General Conclusions and Implications: Parental coping with a diagnosis of complex CHD in their baby can be broadly categorised by the model of stress and coping proposed by Lazarus and Folkman (1984) with the exception of parental pride and focus on the baby. This finding suggests that while the model may be beneficial in guiding clinicians’ generally in understanding the coping strategies employed by parents within this setting, it is limited in its ability to capture the importance of the relationship between parent and baby in coping with the difficulties resulting from a diagnosis. The identified differences in coping strategies between diagnostic groups highlights the need for medical staff to help parents to feel better prepared for the birth and treatment of their baby. This will likely involve assisting parents in gathering information as problem-focused coping was identified as an important strategy employed by both mothers and fathers. Medical staff also have a role to play in helping parents to strengthen their attachment with their baby and find ways to separate their baby from their diagnosis of complex CHD. As a result of these findings, recommendations for further research include the use of quantitative measures, larger sample sizes and targeted exploration of the various forms of meaning-focused coping, emotion-focused coping and sources of reassurance utilised by parents