The emotional process from diagnosis to birth following a prenatal diagnosis of fetal anomaly: A qualitative study of messages in online discussion boards

Carlsson, Tommy; Starke, Veronica; Mattsson, Elisabet

doi:10.1016/j.midw.2017.02.010

Cited by 37 publications

(69 citation statements)

References 32 publications

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“…Whilst provision of additional information is frequently advocated as a solution to support complex decision making, the difficulties associated with this have also been highlighted. 18,27 These findings further support the need for a more nuanced view of informing parents-to-be due to the complexity and variability of the information-seeking process enacted. In this study, the influence of the Internet and technologybased health literacy skills were key to many parents-to-be.…”

Section: Discussionmentioning

confidence: 62%

“…“Information seeking” was a prominent mechanism employed by parents‐to‐be to overcome uncertainty. Whilst provision of additional information is frequently advocated as a solution to support complex decision making, the difficulties associated with this have also been highlighted . These findings further support the need for a more nuanced view of informing parents‐to‐be due to the complexity and variability of the information‐seeking process enacted.…”

Section: Discussionmentioning

confidence: 94%

“…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%

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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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Section: Discussionmentioning

confidence: 62%

Section: Discussionmentioning

confidence: 94%

Section: Discussionmentioning

confidence: 98%

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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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“…[30][31][32] Furthermore, health professionals need to make sure that expectant parents feel involved in the planning of the postnatal care, that they are offered sufficient information, and that they have access to emotional and instrumental support structures. 33…”

Section: Discussionmentioning

confidence: 99%

Parental reactions, distress, and sense of coherence after prenatal versus postnatal diagnosis of complex congenital heart disease

et al. 2019

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Introduction:A diagnosis of congenital heart disease (CHD) in offspring triggers psychological distress in parents. Results of previous studies have been inconsistent regarding the psychological impact of a prenatal versus a postnatal diagnosis. The aim of this study was to evaluate the influence of the time of diagnosis on levels of parental distress.Methods:Pregnant women and their partners with a fetus diagnosed with complex CHD, parents of children with postnatally diagnosed CHD, and pregnant women and their partners with uncomplicated pregnancies were invited to participate. Data were collected during pregnancy and 2–6 months after delivery using the Hospital Anxiety and Depression Scale, sense of coherence, life satisfaction, and Dyadic Adjustment Scale.Results:During pregnancy, the prenatal group scored lower sense of coherence compared to controls (p=0.044). Postnatally the prenatal group scored lower on sense of coherence compared to the postnatal group and controls (p=0.001; p=0.001). Postnatally, the prenatal and postnatal groups had higher levels of anxiety compared to controls (p=0.025; p=0.0003). Life satisfaction was lower in the prenatal group compared to that in the postnatal group and in controls (p=0.000; p=0.0004).Conclusion:Parents with a prenatal diagnosis of CHD in offspring report a low sense of coherence already during pregnancy which decreased further at follow-up. The same group reported a lower satisfaction with life compared to parents of a child with postnatal diagnosis of CHD and parents of a healthy child. This motivates further efforts to improve counselling and support during pregnancy and for parents after a prenatal diagnosis.

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“…Nevertheless, three‐dimensional printing could have cognitive benefit aspects by interfering with the rollercoaster of prenatal emotional process. Indeed, it could help prospective parent in the acceptance step of the facial abnormality by anticipating the reality of the malformed facial shape and by preparing mentally for caring of a disabled child …”

mentioning

confidence: 99%

Comment on “Ethical considerations of prenatal three‐dimensional printing in craniofacial abnormalities”

2019

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The emotional process from diagnosis to birth following a prenatal diagnosis of fetal anomaly: A qualitative study of messages in online discussion boards

Cited by 37 publications

References 32 publications

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

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

Parental reactions, distress, and sense of coherence after prenatal versus postnatal diagnosis of complex congenital heart disease

Comment on “Ethical considerations of prenatal three‐dimensional printing in craniofacial abnormalities”

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