The impact of prenatal counselling on mothers of surviving children with hypoplastic left heart syndrome: A qualitative interview study.

Objective: To explore the role of antenatal counselling in how parents make treatment decisions following an antenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). Background: Antenatal counselling is a critical part of patient management following a diagnosis of fetal congenital heart disea...

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Publicado en:Health Expectations Vol. 23; no. 5; pp. 1224 - 1231
Autores principales: Bertaud, Sophie, Lloyd, David F. A., Sharland, Gurleen, Razavi, Reza, Bluebond‐Langner, Myra
Formato: research tables/charts Journal Article
Publicado: Wiley-Blackwell Oct2020
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Oct2020
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      pub: Wiley-Blackwell
      place: Malden, Massachusetts
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        atl: The impact of prenatal counselling on mothers of surviving children with hypoplastic left heart syndrome: A qualitative interview study.
      aug:
        au:
          Bertaud, Sophie
          Lloyd, David F. A.
          Sharland, Gurleen
          Razavi, Reza
          Bluebond‐Langner, Myra
        affil: Department of Imaging Sciences and Biomedical Engineering, King's College London, Guy's and St Thomas' Hospital, London, UK
      sug:
        subj:
          Prenatal Diagnosis
          Hypoplastic Left Heart Syndrome
          Survivors In Infancy and Childhood
          Mothers Psychosocial Factors
          Prenatal Care Psychosocial Factors
          Counseling Psychosocial Factors
          Decision Making
          Human
          Child
          Qualitative Studies
          Semi-Structured Interview
          Funding Source
          Thematic Analysis
          Content Analysis
          Comparative Studies
          Parents of Children with Disabilities Psychosocial Factors
          Adult
          Female
          Psychological Distress
          Guilt
          Ethics
          Child: 6-12 years
          Adult: 19-44 years
          Female
      ab: Objective: To explore the role of antenatal counselling in how parents make treatment decisions following an antenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). Background: Antenatal counselling is a critical part of patient management following a diagnosis of fetal congenital heart disease; however, there is a very limited evidence base examining how parents actually experience antenatal counselling and make decisions in this context. Methods: Semi‐structured interviews were conducted with women who had received an antenatal diagnosis of HLHS. Interviews were digitally recorded, anonymised and transcribed verbatim. A thematic content analysis was performed using a constant comparative approach. Results: Eight mothers of surviving children with HLHS were interviewed. Eight key themes emerged including new perspectives on how women receive antenatal counselling and how it affects their decision making. Three themes in particular are new to the literature: (a) Mothers of children with HLHS reported feelings of intense guilt that arose in the antenatal period around potentially causing the condition in their child. (b) For this group of women, recollections of perceived pessimism during antenatal counselling had a lasting impact. (c) Despite support from partners or extended family, women nevertheless experienced a strong sense that antenatal decision making was largely a 'maternal' responsibility. Conclusions: When recounting their experiences of antenatal counselling, mothers of surviving children with HLHS offer new perspectives that can guide fetal cardiologists in how best to support their individual patients. Further research is needed to comprehensively understand the experience of prospective parents counselled for severe forms of fetal congenital heart disease.
      pubtype: Academic Journal
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        Journal Article
      ougenre: Article
    language: English
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