Women’s experience of coping with termination of pregnancy for fetal abnormality: coping strategies, perinatal grief and posttraumatic growth

Pregnancy termination for fetal abnormality (TFA) represents 2% of all terminations in England and Wales. In recent years, the number of TFAs has risen (3,099 in 2014 compared to 2,085 in 2009) due to technological developments in prenatal diagnosis and increased maternal age, which have led to a growing number of fetal abnormalities being identified, and this earlier in pregnancy. Research suggests that TFA can have negative, long-lasting psychological consequences for women. These include depression, posttraumatic stress disorder and complicated grief. However, at the inception of the research programme, no research had been conducted on women’s coping processes when dealing with TFA despite\ud clear evidence of a relationship between coping processes and psychological adjustment in other areas of health research. Similarly, although research indicates that some individuals experience positive growth as a result of trauma, no empirical work had been undertaken on\ud potential positive psychological outcomes following TFA. Finally, a dearth of research on health professionals’ understanding of women’s coping with TFA was also identified, despite the likely impact this understanding would have upon women’s experience of care and the\ud way they cope with TFA.\ud \ud This thesis aims to address these knowledge gaps in order to further our understanding of women’s experience of TFA. Specifically, the research had three main\ud objectives: 1) to gain an understanding of women’s coping strategies when dealing with TFA; 2) to examine the relationship between coping and psychological outcomes, as defined by perinatal grief and posttraumatic growth; and 3) to investigate health professionals’\ud perceptions of women’s coping to identify potential disparities between health professionals’\ud and women’s accounts. To answer these objectives, a mixed methodology was utilised and five studies were\ud conducted: a systematic review of the qualitative evidence pertaining to women’s experiences of TFA; two qualitative studies: the first one exploring women’s coping strategies when dealing with TFA, and the second one investigating health professionals’ perceptions of women’s coping; and, finally, two quantitative studies: the first one examining the relationship between coping strategies and perinatal grief, and the second one\ud assessing the relationship between coping, perinatal grief and posttraumatic growth. The empirical work relating to the women was carried out online, with participants recruited from a specialist support organisation. The empirical work concerning the health professionals was conducted face-to-face, with participants recruited from three hospitals in England.\ud Ethical approval was obtained for all studies prior to fieldwork commencing.\ud The research generated several important findings, which both build upon existing evidence and further our insights into women’s experience of TFA. Firstly, the research clearly indicates that women regard TFA as a traumatic event, which is akin to an existential\ud crisis and which can have negative psychological consequences. Women view TFA as a unique form of bereavement, which can be misunderstood and stigma-bearing. The research also indicates that TFA is an individual as well as a social phenomenon with women’s\ud experiences both shaping and reflecting the political and sociocultural environment within which TFA occurs. \ud \ud Secondly, the research shows that coping with TFA involves four main strategies: ‘support,’ ‘acceptance,’ ‘avoidance,’ and ‘meaning attribution’ which are relevant to both the termination procedure and its aftermath. The findings also reveal that, despite mainly using coping strategies considered to be adaptive, women’s levels of grief are high, and that, for some individuals, distress persists long after the termination. The research also provides evidence of a relationship between coping and psychological adjustment to TFA, with strong associations observed between several coping strategies and psychological adjustment. In particular, the research shows that coping strategies such as ‘acceptance’ and ‘positive reframing’ are closely associated with lower levels of grief, whilst ‘self-blame’ and ‘behavioural disengagement’ relate to higher grief levels. \ud Thirdly, the research offers new insights into the potential for personal growth following TFA. This is particularly manifest in the qualitative investigations and, although it is less evident in the quantitative study, moderate levels of growth were observed for several growth dimensions: ‘relating to others,’ ‘personal strengths’ and ‘appreciation of others.’ The\ud findings also indicate that a relationship exists between coping and posttraumatic growth, with ‘positive reframing’ being a significant predictor of growth.\ud \ud Lastly, the findings reveal that health professionals have a valid understanding of women’s short-term coping strategies when dealing with TFA, but have limited insights into their long-term coping processes. This points to a deficit in aftercare, an issue which was\ud raised by the women in this research.\ud \ud Collectively, these findings have important implications in terms of theory, practice and future research in the area of TFA, which are considered in this thesis. Among the most significant ones are the need to identify women at risk of poor psychological adjustment, the need for a truly women-centred care that continues well beyond the termination, as well as the importance of ‘acceptance’ and ‘positive reframing’ as potential protective factors against distress and of ‘positive reframing’ as a potential foundation for growth. A corollary of the\ud research is the development and implementation of a psychological intervention to support women following TFA. This proposed intervention is underpinned by the reported high levels of grief, the deficit in aftercare, and the potential for growth following TFA, and represents the next step of the research programme