Table 2

Summary of the methodology and data of the 11 publications used in this review

Andersen et al,18 2008Qualitative: in-depth, face-to-face interviews
  • To investigate psychosocial aspects of living with long QT syndrome (LQTS)

  • To identify the daily challenges and coping strategies of LQTS patients

  • To describe the experience of LQTS patients with healthcare services

  • LQTS patients were concerned that the condition would be inherited by their children and grandchildren.

  • LQTS patients favoured early genetic testing for LGTS, and the provision of information about LQTS in children presented early and gradually.

Claessens et al,19 2005Qualitative: unstructured, in-depth interviews
  • To explore the lived experiences of adult patients with congenital heart disease

  • The central theme of the patients’ lived experiences was ‘feeling different’. Patients struggled constantly with themselves and with their environment to be accepted as normal.

Dekker et al,22 2016Publicly available narratives from three online support groups
  • To describe the experience of women diagnosed with peripartum cardiomyopathy (PPCM)

  • Nearly 40% of women felt that they were dismissed by healthcare providers. Women had difficulty caring for their newborns during the postnatal period, and they struggled with the medical advice they received to not conceive again.

Gantt,21 1992Qualitative: unstructured face-to-face interviews; grounded theory
  • To generate an understanding of, and theories about, the lives of women with congenital heart disease

  • Lack of information related to women’s bodies and reproductive issues (‘growing up female’).

  • Over involvement of mothers and healthcare professionals in the affairs of the child’s and woman’s body, resulting in decreased ownership of the body by the woman (‘living against the body’).

  • Poor self-esteem, self-concept and body image (‘growing up heartsick’).

  • A need for various types of counselling for women with congenital heart disease was identified.

Gantt,20 2002Qualitative: descriptive with unstructured interviews
  • To study the effect of congenital heart diseases on the mother–daughter relationship

  • Over-riding theme of the study was normalising in the face of chronic illness, with a tendency by the mothers and daughters to focus on their lives instead of their relationship with one another.

Hess et al,26 2010Descriptive: a survey of open-ended and Likert-type questions
  • To determine the benefits of participation in the online support group for peripartum cardiomyopathy, based on a survey of active members of the group

  • One of the most important issues facing women with peripartum cardiomyopathy is future childbearing.

  • The benefits of participation in the online support group included obtaining and sharing information, exchanging stories, being understood by other women and reassurance.

Hess et al,27 2012Mixed method: analysis of social media postings made by 156 people
  • To describe the contents of postings made on the My Space peripartum cardiomyopathy support group website by women with peripartum cardiomyopathy

  • The subject of pregnancy subsequent to the diagnosis of peripartum cardiomyopathy was mentioned 102 times (among 247 posts), making it an issue that was foremost in the minds of many women.

Ngu et al,25 2014Mixed method: retrospective and descriptive
  • To assess the perceptions of women with congenital heart disease regarding the severity of their cardiac abnormality and its implications in pregnancy, and whether their motivations to conceive were similar to those of women without congenital heart disease

  • The personal experience of women, who successfully lived with their heart condition, influenced their perception of the pregnancy risks.

  • Women with congenital heart disease were concerned about the health risks associated with their congenital heart disease and that of their child.

Ngu et al,24 2014Mixed method: case studies
  • To understand the motivations of women with congenital heart disease to bear children, and to assess if there were any differences between the cohort with low-risk and those with high-risk heart disease

  • Women with high-risk (moderate to severe) congenital heart disease appeared to have similar motivations for conceiving as women with low-risk (mild) congenital heart disease. Their drive for motherhood appeared to be stronger than their drive for self-care.

Patel, Berg et al,28 2016Mixed method: qualitative face-to-face and telephone interviews; review of medical records
  • To explore and describe the experiences of symptoms in peripartum cardiomyopathy in women

  • A sense of being caught in a spider web consisting of the invasion of the body by experienced symptoms and a feeling of helplessness.

Patel, Schaufelberge et al,23 2016Qualitative: unstructured interviews
  • To explore the healthcare experience of women during their diagnosis with peripartum cardiomyopathy

  • The main theme was ‘Exacerbated Suffering’ expressed in three subthemes: ‘not being cared about’, ‘not being cared for’ and ‘not feeling secure’.