Experiences of prenatal diagnosis and decision‐making about termination of pregnancy: A qualitative study

Hodgson, Jan; Pitt, Penelope; Metcalfe, Sylvia; Halliday, Jane; Menezes, Melody; Fisher, Jane; Hickerton, Chriselle; Petersen, Kerry; McClaren, Belinda

doi:10.1111/ajo.12501

Cited by 53 publications

(60 citation statements)

References 19 publications

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“…The average grief score following TOPFA was particularly high; this is in line with previous research which suggests that parents faced with TOPFA experience speci c challenges which can contribute to high and/or prolonged levels of grief [86,87]. Given these ndings, further investigation is warranted to understand the potential di culties associated with this type of loss -particularly for men, for whom limited research to date has focused on [87][88][89]. Overall, men who experienced a stillbirth had the highest average grief scores.…”

Section: Discussionsupporting

confidence: 83%

Factors Contributing to Men’s Grief Following Pregnancy Loss and Neonatal Death: Further Development of an Emerging Model in an Australian Sample

Obst

Oxlad

Due

et al. 2020

Preprint

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Background: Historically, men’s experiences of grief following pregnancy loss and neonatal death have been under-explored in comparison to women. However, investigating men’s perspectives is important, given potential gendered differences concerning grief styles, help-seeking and service access. Few studies have comprehensively examined the various individual, interpersonal, community and system/policy-level factors which may contribute to the intensity of grief in bereaved parents, particularly for men. Methods: Men (N = 228) who had experienced an ectopic pregnancy, miscarriage, stillbirth, termination of pregnancy for foetal anomaly, or neonatal death within the last 20 years responded to an online survey exploring their experiences of grief. Multiple linear regression analyses were used to examine the factors associated with men’s grief intensity and style. Results: Men experienced significant grief across all loss types, with the average score sitting above the minimum cut-off considered to be a high degree of grief. Eight factors significantly contributed to men’s grief: type of loss experienced, their age at the time of loss, loss history, marital satisfaction, availability of social support, acknowledgement of their grief from family/friends, time spent bonding with the baby during pregnancy, and feeling as though their role of ‘supporter’ conflicted with their grief process. Factors contributing to grief also differed depending on grief style. Intuitive (emotion-focused) grief was associated with viewing an ultrasound during pregnancy, ethnicity, and support received from healthcare professionals. Instrumental (activity-focused) grief was associated with time and quality of attachment to the baby during pregnancy, availability of social support, acknowledgement of men’s grief from their female partner, supporter role interfering with their grief, and tendencies toward self-reliance.Conclusions: Following pregnancy loss and neonatal death, men can experience high levels of grief, requiring acknowledgement and validation from all healthcare professionals, family/friends, community networks and workplaces. Addressing male-specific needs, such as balancing a desire to both support and be supported, requires tailored information and support. Strategies to support men should consider grief styles and draw upon father-inclusive practice recommendations. Further research is required to explore the underlying causal mechanisms of associations found.Trial registration: N/A

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Section: Discussionsupporting

confidence: 83%

Factors Contributing to Men’s Grief Following Pregnancy Loss and Neonatal Death: Further Development of an Emerging Model in an Australian Sample

Obst

Oxlad

Due

et al. 2020

Preprint

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“…The complexity of the situation faced by parents-to-be as they negotiate the uncertainty arising from the diagnosis of a severe fetal anomaly is increasingly documented within the antenatal literature. 16,[18][19][20] However, the decision-making processes and the impact of these on health care encounters are largely overlooked, with the findings of this study providing initial insights that begin to address this gap.…”

Section: Discussionmentioning

confidence: 98%

Diagnosis of a severe congenital anomaly: A qualitative analysis of parental decision making and the implications for healthcare encounters

Lotto

Smith

Armstrong

2018

Health Expectations

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ObjectiveTo explore parental decision making following diagnosis of a severe congenital anomaly, and implications for healthcare encounters.DesignQualitative semi‐structured interviews with 38 parents‐to‐be were collated and triangulated with data generated from consultation recordings.AnalysisData were analysed using a constant comparative‐based approach.SettingRecruitment was undertaken across four fetal medicine sites in two tertiary referral trusts.ParticipantsParents‐to‐be whose pregnancy was suspected or diagnosed as being affected by a severe congenital anomaly. This sample was purposive to include known factors affecting the decision to terminate or continue the affected pregnancy.FindingsIn trying to make a decision about how to proceed with their pregnancy, parents‐to‐be typically had to work hard to negotiate multiple uncertainties around the diagnosis and prognosis of the suspected anomaly. This was influenced by parents’ capacity to cope with uncertainty and the way in which uncertainty was managed by the clinical team. This negotiation of uncertainty was enacted within a fluid, nonlinear three‐phase process: “information seeking,” reflecting the way parents‐to‐be face the uncertainty associated with a fetal diagnosis and associated prognosis; “implications,” where consideration is given to future consequences of the decision; and “decision making,” which reflects the way in which the decision is made (head‐ or heart‐led). Spectrums of responses were apparent within each phase.ConclusionsThis study provides important insights into how parents‐to‐be make decisions following diagnosis or suspicion of a severe congenital anomaly. The impact of these on healthcare encounters is discussed, alongside recommendations for clinical practice.

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“…Receiving ‘solid’ information and PSC from professionals can help prevent psychological symptoms from developing post‐TOP, but until now, it is not clear what disciplines should be involved at the different stages. The results of our study provide guidance on this issue.…”

Section: Discussionmentioning

confidence: 99%

Termination of pregnancy for fetal anomalies: Parents' preferences for psychosocial care

Dekkers

Stapersma

et al. 2019

Prenatal Diagnosis

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Objective To investigate, from the perspective of women and partners, at what stage of a termination of pregnancy (TOP) for fetal anomalies psychosocial care (PSC) is most meaningful, what topics should be discussed, and who should provide PSC. Method A cross‐sectional retrospective cohort study was conducted with a consecutive series of 76 women and 36 partners, who completed a semi‐structured online questionnaire. Results Overall, women expressed a greater need for PSC than their partners. Parents expressed a preference for receiving support from a maternal‐fetal medicine specialist to help them understand the severity and consequences of the anomalies found and to counsel them in their decision regarding termination. Parents showed a preference for support from mental healthcare providers to help with their emotional responses. Forty‐one percent of the women visited a psychosocial professional outside of the hospital after the TOP, indicating a clear need for a well‐organised aftercare. Conclusion Different disciplines should work together in a complementary way during the diagnosis, decision making, TOP, and aftercare stages. Parents' need for PSC should be discussed at the beginning of the process. During aftercare, attention should be paid to grief counselling, acknowledgement of the lost baby's existence, and possible future pregnancies.

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Experiences of prenatal diagnosis and decision‐making about termination of pregnancy: A qualitative study

Abstract: This study has demonstrated the importance of providing timely access to accurate information and supportive, non-judgemental care for women and their partners following prenatal diagnosis of a fetal abnormality.

Cited by 53 publications

References 19 publications

Factors Contributing to Men’s Grief Following Pregnancy Loss and Neonatal Death: Further Development of an Emerging Model in an Australian Sample

Factors Contributing to Men’s Grief Following Pregnancy Loss and Neonatal Death: Further Development of an Emerging Model in an Australian Sample

Diagnosis of a severe congenital anomaly: A qualitative analysis of parental decision making and the implications for healthcare encounters

Termination of pregnancy for fetal anomalies: Parents' preferences for psychosocial care

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