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 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 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 way they cope with TFA. 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 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’ perceptions of women’s coping to identify potential disparities between health professionals’ and women’s accounts. To answer these objectives, a mixed methodology was utilised and five studies were 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 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. Ethical approval was obtained for all studies prior to fieldwork commencing. 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 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 experiences both shaping and reflecting the political and sociocultural environment within which TFA occurs. 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. 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 findings also indicate that a relationship exists between coping and posttraumatic growth, with ‘positive reframing’ being a significant predictor of growth. 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 raised by the women in this research. 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 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

The role of beliefs about infertility on psychological adjustment: a systematic review

Aims Beliefs about an illness can influence psychological adjustment. This relationship has been studied using the Common Sense Model (CSM). This systematic review explores the association between perceptions of infertility, measured by the Illness Perception Questionnaire (IPQ), and psychological adjustment among patients with difficulty conceiving. Methods Six electronic databases were searched between 1996 and 2012. Results Three papers were selected. Results indicate significant relationships between perceptions of infertility and psychological adjustment. Perceptions of more severe consequences, longer timeline and lower controllability contributed to greater distress and lower well-being. Individuals’ perceptions influenced partner’s psychological adjustment. Gender differences were also observed. Conclusions The review suggests that the CSM is an appropriate framework to study infertility. Thus, interventions based on modifying perceptions of infertility may improve psychological well-being. Given the limited number of studies available and methodological limitations, further research is needed to ascertain the IPQ’s contribution to research on infertility

Conducting research in a sensitive area: a researcher’s reflective account of the joys and pitfalls of doing research on termination of pregnancy for fetal abnormality

Perinatal loss has received widespread coverage with the Baby Loss Awareness Week that took place in October 2018. But what is it like to do research in such a sensitive area? This article offers a researcher’s reflections on the joys and pitfalls of conducting research on pregnancy termination for fetal abnormality

Pregnancy termination for fetal abnormality: do coping strategies predict perinatal grief and posttraumatic growth?

Background - Pregnancy termination for fetal abnormality (TFA) represents 2% of all terminations in England and Wales. This number has increased in recent years (3,099 in 2014 vs. 2,085 in 2009, Department of Health, 2010-2015) due to technological developments in prenatal diagnosis and increased maternal age, which have led to more fetal abnormalities being identified. TFA can have negative psychological consequences for women, including depression, posttraumatic stress disorder and complicated grief (Kersting et al., 2007, 2009; Korenromp et al., 2009). However, little is known of women’s coping processes when dealing with TFA despite evidence of a relationship between coping and psychological adjustment (Carver & Connor-Smith, 2010; Lazarus & Folkman, 1984). Similarly, although research indicates that some individuals experience positive growth as a result of trauma (Tedeschi & Calhoun, 2004) no research has been conducted on potential positive psychological outcomes following TFA. Aims - The objective of the study was to gain insights into women’s coping strategies when dealing with TFA and examine the relationship between coping and psychological adjustment as defined by perinatal grief and posttraumatic growth. Methods - A quantitative retrospective study was conducted between February and May 2014. Participants were recruited from a support organisation and completed the Brief COPE, the Short Perinatal Grief Scale and the Posttraumatic Growth Inventory. Data were collected online from 161 participants, and analysed using multiple regression analyses. Results - Despite mainly using adaptive coping strategies, women’s levels of grief were high and, for some, distress persisted long after the termination. Only moderate levels of growth were observed. A relationship between coping and psychological adjustment was evidenced. In particular, coping strategies such as ‘acceptance’ and ‘positive reframing’ were closely associated with lower levels of grief, whilst ‘self-blame’ and ‘behavioural disengagement’ related to higher grief levels. Similarly, ‘positive reframing’ was a significant predictor of posttraumatic growth. Implications – The study has several practical implications including: the need to identify women at risk of poor psychological adjustment and the need for a truly women-centred care. Furthermore, coping strategies such as ‘acceptance’ and ‘positive reframing’ appear particularly relevant as potential protective factors against distress and foundation for growth. Interventions such as Cognitive Behavioural Therapy or Acceptance and Commitment Therapy may be beneficial for women

Interruptions de grossesse pour anomalie foetale: un aperçu de la situation en Angleterre

This talk will cover the legal, political and practical frameworks within which pregnancy termination for fetal abnormality (TFA) take place in England. It will also provide an overview of the practice of prenatal diagnosis in England, discuss the health professionals' take on the law and examine their reflections on their own clinical practice. The talk will conclude with an exploration of women's experiences of TFA and a discussion about the support available to them

Frames of decision-making in prenatal consultations in England and France. Towards a sociological, relational, and processual approach to autonomy

Rationale, aims and objectives The article looks at how, during consultations, pregnant women identified as presenting an increased risk of giving birth to a child with an impairment, and practitioners in the field of prenatal diagnosis, decide whether or not to accept the risk of a miscarriage and proceed with a diagnostic examination. Methods We conducted 63 observations of consultations in France and 22 in England. Participants were women for whom an elevated risk of abnormality had been identified and the practitioners involved in their care. Our analytical approach consisted in suspending the normative concepts of non-directiveness and autonomy, and in drawing on Goffman’s (1974) notion of “frame” to take account of the experiential and structural aspects that the protagonists bring into the (inter)actions. Results We identified four frames: medico-scientific expertise, medical authority, religious authority and compassion. Observation of the ways in which the frames intertwine during consultations revealed configurations that facilitate or hinder the fluidity of the interactions and the decision-making process. The medico-scientific expertise frame, imposed by the guidelines, heavily dominated our observations, but frequently caused distress and misunderstanding. Temporary or sustained use of the compassion and/or medical authority frames could help to repair the discussion and create the conditions that enable women/couples to reach a decision. Variations in configuration highlighted the differences between practitioners in the two countries. Conclusions Combining frames allows protagonists to exert reflective abilities and to maintain/restore interactions. The frame analysis promotes a vision of autonomy that is sociological, relational and processual rather than philosophical. The frames are anchored in different structural conditions in England and France

Mental health and wellbeing in doctoral students from Black, Asian and Minority Ethnic backgrounds (BAME)

There is a large body of evidence for the poor mental health of both undergraduate and postgraduate students in higher education settings (Peluso et al., 2011), leading to the Higher Education Academy calling for higher education (HE) institutions to embed information and support on mental wellbeing into teaching and learning strategies (Houghton & Anderson, HEA 2017). There is a dearth of research on doctoral students. The limited evidence available suggests that doctoral students may experience a greater degree of difficulty with maintaining good levels of mental health and wellbeing compared to undergraduate students (Peluso et al., 2011). Evidence also suggests that Black, Asian and Minority Ethnic (BAME) doctoral students face specific challenges that are not addressed by universities’ support structures (Peluso et al., 2011). The objective of this study was to explore the mental health and wellbeing of doctoral students from BAME backgrounds

Women's coping with pregnancy termination for fetal abnormality: a comparison between health professionals' perceptions and women's accounts

Background: Termination of pregnancy for fetal abnormality (TFA) may have profound psychological consequences. Evidence suggests that women’s experience of care influences the way they adjust to TFA. Yet caring for parents in these circumstances presents some challenges for health professionals, which may relate to their understanding of women’s experience. Objectives: This study examined health professionals’ perceptions of women’s coping with TFA. Data were compared with women’s accounts of their coping processes to identify similarities and differences. Methods: A qualitative study was conducted among health professionals in two fetal medicine units in England. Fifteen semi-structured interviews were conducted with a range of professionals. Data were analysed using Thematic Analysis and compared with the results of a qualitative study of women’s experience of coping with TFA. Results: Health professionals’ perceptions of women’s coping with TFA covered six areas, also present in women’s accounts: support, acknowledging the baby, problem-solving, avoidance, meaning making and another pregnancy. Health professionals also considered their role as information providers as essential in women’s ability to cope with TFA, while women, generally placed more importance on health professionals’ emotional support. Results also indicate a lack of insights into women’s long-term coping processes, although midwives appeared more knowledgeable than fetal medicine consultants on this point. Conclusion: Health professionals’ perceptions of women’s coping with TFA closely matched women’s accounts suggesting a high level of understanding. However, the lack of insight into women’s long-term coping processes has important clinical implications, as research suggests that coping with TFA is a long-term process

Posttraumatic growth following pregnancy termination for fetal abnormality: the predictive role of coping strategies and perinatal grief

Background: Research about termination for fetal abnormality (TFA) suggests that it is a traumatic event with potential negative psychological consequences. However, evidence also indicates that following traumatic events individuals may experience growth. Although TFA’s negative psychological outcomes are well documented, little is known of the potential for growth following this event. Therefore, the study’s objectives were to measure posttraumatic growth (PTG) post-TFA, examine the relationship between PTG, perinatal grief and coping, and determine the predictors of PTG. Design: An online, retrospective survey was conducted with 161 women. Methods: Eligible participants were women over 18 who had undergone TFA. Participants were recruited from a support organisation. They completed the Brief COPE, Short Perinatal Grief Scale and Posttraumatic Growth Inventory. Data were analysed using regression analyses. Results: Moderate levels of PTG were observed for “relating to others,” “personal strengths” and “appreciation of life.” “Positive reframing” was a significant predictor of PTG. Despite using mainly “adaptive” coping strategies, women’s grief levels were high. Conclusions: “Adaptive” coping strategies such as, “positive reframing” are relevant to TFA. They may act as protective factors against distress and as foundations for growth, implicating that interventions such as Cognitive Behavioural Therapy, which aim to reframe women’s experience, may be beneficialN/

Pregnancy termination for fetal abnormality: ambivalence at the heart of women’s experience

The aim of this article is to demonstrate the centrality of ambivalence in women’s experience of pregnancy termination for fetal abnormality (TFA). Data were collected from two qualitative studies conducted in England and France with women who had undergone TFA (n = 44). The findings point to eight manifestations of ambivalence throughout the process of TFA: hope and despair, a choice but no choice, standing still and rushing, bonding and detaching, trauma and peace, disclosure and secrecy, bridging past and future, and individual and societal experience. Women’s ambivalence illustrates their internal struggle to reconcile the act of termination with their desire to become mothers. It also reflects societal tensions regarding abortion and disability. We argue that the absence of normative responses, social desirability bias and the potentially confusing coexistence of the fields of prenatal diagnosis and social integration of people with disability account for the ambivalence women feel as they go though TFA. As women’s ambivalence may impact upon the way they adjust to TFA, it is important to remain cognisant of the complexity of TFA to support women appropriately