The parental journey of fetal care: a systematic review and metasynthesis

Wilpers, Abigail; Bahtiyar, Mert Ozan; Stitelman, David H.; Batten, Janene; Calix, R.X.; Chase, Victoria; Yung, Nicholas; Maassel, Nathan; Novick, Gina

doi:10.1016/j.ajogmf.2021.100320

Cited by 20 publications

(26 citation statements)

References 36 publications

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“…Potential harm from a disconnect of beliefs and values between the provider and patient can occur [66]. Future improvements in care quality during a life-defining event may facilitate a less traumatic experience, further assisting parental adaptation and care engagement [67]. Parents with fewer resources for support psychosocially are more at risk of lower wellbeing over time [68].…”

Section: Discussionmentioning

confidence: 99%

What is Known About Critical Congenital Heart Disease Diagnosis and Management Experiences from the Perspectives of Family and Healthcare Providers? A Systematic Integrative Literature Review

Watkins

Isichei

Gentles³

et al. 2022

Pediatr Cardiol

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The experience of diagnosis, decision-making and management in critical congenital heart disease is layered with complexity for both families and clinicians. We synthesise the current evidence regarding the family and healthcare provider experience of critical congenital heart disease diagnosis and management. A systematic integrative literature review was conducted by keyword search of online databases, MEDLINE (Ovid), PsycINFO, Cochrane, cumulative index to nursing and allied health literature (CINAHL Plus) and two journals, the Journal of Indigenous Research and Midwifery Journal from 1990. Inclusion and exclusion criteria were applied to search results with citation mining of final included papers to ensure completeness. Two researchers assessed study quality combining three tools. A third researcher reviewed papers where no consensus was reached. Data was coded and analysed in four phases resulting in final refined themes to summarise the findings. Of 1817 unique papers, 22 met the inclusion criteria. The overall quality of the included studies was generally good, apart from three of fair quality. There is little information on the experience of the healthcare provider. Thematic analysis identified three themes relating to the family experience: (1) The diagnosis and treatment of a critical congenital heart disease child significantly impacts parental health and wellbeing. (2) The way that healthcare and information is provided influences parental response and adaptation, and (3) parental responses and adaptation can be influenced by how and when support occurs. The experience of diagnosis and management of a critical congenital heart disease child is stressful and life-changing for families. Further research is needed into the experience of minority and socially deprived families, and of the healthcare provider, to inform potential interventions at the healthcare provider and institutional levels to improve family experience and support.

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Section: Discussionmentioning

confidence: 99%

What is Known About Critical Congenital Heart Disease Diagnosis and Management Experiences from the Perspectives of Family and Healthcare Providers? A Systematic Integrative Literature Review

Watkins

Isichei

Gentles³

et al. 2022

Pediatr Cardiol

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“…Wilpers et al [ 35 ] reported that women’s hopes amidst uncertainty or a poor prognosis could easily be misinterpreted as optimistic when healthcare providers are unaware of the unique hopes of the parents. Thus, it would be possible to avoid the negative views of BPs by clinicians even in obstetric-led situations in which fetal anomalies are diagnosed if healthcare providers understand the unique hopes of women and if it is possible to discuss these hopes between the woman and the healthcare provider in advance.…”

Section: Discussionmentioning

confidence: 99%

Hopes expressed in birth plans by women diagnosed with fetal anomalies: a qualitative study in Japan

Chiba

Horiuchi

Ishikawa

et al. 2022

BMC Pregnancy Childbirth

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Background Recent advances in prenatal screening and diagnosis have resulted in an increasing number of women receiving a diagnosis of fetal anomalies. In this study, we aimed to clarify the hopes for childbirth and parenting of women diagnosed with fetal anomalies and to suggest a family-centered care tailored for this situation in perinatal settings. Methods A descriptive qualitative study was performed. We recruited women diagnosed with fetal anomalies who were over 22 years old, beyond 22 weeks of gestation, and had scheduled pregnancy and delivery management at a tertiary perinatal medical center specializing in neonatal and pediatric care in a metropolitan area of Japan from April 2019 to December 2019. Women who were willing to participate received support from a midwife to create birth plans. Data were collected from the documented birth plans submitted by 24 women and analyzed using content analysis. Results We identified three themes of women’s hopes based on the descriptions of the submitted birth plans: (1) Hopes as women who are expecting childbirth, (2) Hopes as mothers of a baby, (3) Hopes of being involved in the family needs. Several distinctive hopes were clarified in the context of the women’s challenging situations. In describing their hopes, the women were neither overoptimistic or overstated their actual situations, nor caused embarrassment to the healthcare providers. The importance of supporting their involvement in baby matters in the way each family wants also emerged. However, several barriers to fulfilling the women’s hopes were identified including the babies’ conditions and hospital regulations against family visits or presence. Conclusion All three themes identified in the study provide important insights for analyzing more deeply ways of implementing a family-centered care for women diagnosed with fetal anomalies in perinatal settings. To improve women’s engagement in decision-making as a team member, women’s hopes should be treated with dignity and respect, and included in the perinatal care of women with abnormal fetuses. Further research is needed to improve the inclusion of women’s hopes in their care in clinical settings. Trial registration UMIN Clinical Trials Registry: UMIN000033622 (First registration date: 03/08/2018).

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“…In a systematic review and meta‐synthesis of studies focused on patients' experiences in a tertiary, specialized hospital, Wilpers et al (2021) revealed three themes associated with a positive care experience of parents diagnosed with fetal anomalies: gaining understanding and feeling understood, realizing agency and control, and finding hope and meaning. In the present study, the care in the IG appeared to have achieved all these themes via the delivery of the BPPing program.…”

Section: Discussionmentioning

confidence: 99%

“…Other studies have reported on physicians' perspectives on women's hopes with fetal anomalies. Wilpers et al (2021) showed that women's hopes amidst uncertainty or a poor prognosis were occasionally misunderstood as optimistic by healthcare providers, and it likely happened if healthcare providers were unaware of the unique hopes held by the parents. Additionally, Cortezzo et al (2019) revealed that more than one-third of physicians who participated in the study did not have sufficient time to complete the BPs with parents and that some physicians felt uncomfortable in creating the BPs with the families.…”

Section: Support For Clinicians' Understandings Of Women's Hopesmentioning

confidence: 99%

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Clinical trial of a birth and parenting planning program for women diagnosed with fetal anomalies: A feasibility study

Chiba

Horiuchi

Arimori

2022

Japan Journal Nursing Sci

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Aim We assessed the feasibility of the Birth and Parenting Planning (BPPing) program we developed to support women diagnosed with fetal anomalies. Methods We conducted a feasibility study using a quasi‐experimental, post‐test only, non‐equivalent groups design. We assessed feasibility from four aspects: (1) Demand: birth plan submitting rate (primary outcome); (2) Acceptability: woman's satisfaction of care scale (SATISFACTION) and Visual Analog Scale for care satisfaction; (3) Preliminary efficacy: women's recognition of being able to express and share her hopes scale (HOPES); and (4) Safety: obstetric/neonatal outcomes and frequency of women's referral to a psychological counselor. Fisher's exact test and Mann–Whitney U‐test were used for data analysis. Results We enrolled 62 women with fetal anomalies attending a perinatal medical center for antenatal check‐ups. Of these, 51 women (median age: 34 years) received either the BPPing program (intervention group: n = 25) or the usual care (control group: n = 26). The birth plan submitting rates were 96% (intervention group, 24/25) and 7.7% (control group, 2/26). The intervention group had a significantly higher total score on HOPES at postpartum (U = 441.5, p = 0.027). Upon subgroup analysis based on parity, in the intervention group only, the multiparas had a higher score on the SATISFACTION item, “I would recommend the care I received to someone in a similar situation”. There were no adverse events in either group. Conclusion The BPPing program was feasible in supporting women diagnosed with fetal anomalies in terms of demand, acceptability, preliminary efficacy, and safety.

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The parental journey of fetal care: a systematic review and metasynthesis

Cited by 20 publications

References 36 publications

What is Known About Critical Congenital Heart Disease Diagnosis and Management Experiences from the Perspectives of Family and Healthcare Providers? A Systematic Integrative Literature Review

What is Known About Critical Congenital Heart Disease Diagnosis and Management Experiences from the Perspectives of Family and Healthcare Providers? A Systematic Integrative Literature Review

Hopes expressed in birth plans by women diagnosed with fetal anomalies: a qualitative study in Japan

Clinical trial of a birth and parenting planning program for women diagnosed with fetal anomalies: A feasibility study

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