Table 4.
List of included articles and their characteristics
| Author, year | Setting | Study design | Sample (n =) | Ethnicity, marital status (when documented) | Sample (type) | Study quality |
|---|---|---|---|---|---|---|
| Gaskin, 2021 [45] | UK, specialist children cardiac centre | Prospective longitudinal mixed methods (interviews and self-report instruments) | n = 16 mothers and fathers | 25% minority ethnicity, 91.6% living with partner | CCHD | Good |
| Hill, 2019 [42] | USA, major academic children’s hospital |
Prospective longitudinal qualitative focus group interviews Secondary analysis of part of a larger study |
n = 3 groups of mothers and fathers | 33.3% minority ethnicity, 100% married | CCHD | Good |
| Cantwell-Bartl, 2013 [44] | Australia, tertiary hospital PICU | Cross-sectional mixed methods (retrospective narrative interviews and psychometric testing) | n = 29; 16 mothers and 13 fathers | 17% English as a second language | HLHS | Good |
| Lisanti, 2017 [41] | USA, Children’s hospital of Philadelphia PICU | Cross-sectional qualitative focus group. Retrospective narrative interviews | n = 14 mothers in 3 focus groups | 7% minority ethnicity, 93% married | CCHD | Good |
| Bertaud, 2020 [58] | UK, tertiary hospitals | Cross-sectional qualitative content analysis of retrospective narrative interviews | n = 8 mothers | Not documented | HLHS | Good |
| Ellinger, 2010 [49] | Canada, tertiary hospital | Cross-sectional qualitative retrospective narrative interviews | n = 25; 15 mothers and 10 fathers | Not documented | HLHS | Fair |
| Vandvik, 2000 [53] | Norway, National hospital | Cross-sectional qualitative retrospective narrative interviews | n = 20 mothers | 80% remained in partnership with the father after birth | HLHS | Fair |
| Cantwell-Bartl, 2014 [48] | Australia, tertiary children’s hospital | Cross-sectional qualitative retrospective narrative interviews | n = 29; 16 mothers and 13 fathers | Not documented | HLHS | Good |
| Hwang, 2020 [52] | Korea, tertiary hospital | Cross-sectional qualitative retrospective narrative interviews | n = 9 fathers | Not documented | CCHD | Good |
| Harvey, 2013 [43] | USA, tertiary children’s hospital | Cross-sectional qualitative retrospective journal entry | n = 8 mothers | 37.5% minority ethnicity, 75% married, 25% divorced | CHD | Good |
| Sood, 2018 [59] | USA, tertiary children’s hospital | Cross-sectional qualitative interviews | n = 34; 20 mothers and 14 fathers | 53% minority ethnicity, 85% non-single parents | CHD | Good |
| Kim, 2017 [51] | Korea, tertiary hospital | Prospective cross-sectional qualitative interviews | n = 6 fathers | Not documented | CHD | Good |
| Harris, 2020 [46] | USA, tertiary children’s hospital | Prospective longitudinal qualitative interviews | n = 27; 16 mothers, 8 fathers and 3 support people | 26% minority ethnicity, 18% English as a second language | CCHD | Good |
| Carlsson, 2016 [54] | Sweden, two tertiary referral hospitals | Prospective cross-sectional content analysis of qualitative interviews | n = 26; 14 mothers and 12 fathers (11 continued pregnancy and 15 terminated) | 100% Swedish | CHD | Good |
| Carlsson, 2016 [55] | Sweden, tertiary referral hospital | Prospective cross-sectional qualitative content analysis of interviews | n = 9; 5 mothers and 4 fathers | 100% minority ethnicity | CHD | Good |
| Lotto, 2018 [34] | UK, four fetal medicine sites, two tertiary referral hospitals | Prospective cross-sectional qualitative interviews and audio-recording of consults | n = 38; 20 mothers and 18 fathers | Not documented | Severe fetal anomalies | Fair |
| Woolf-King, 2018 [60] | USA, tertiary children’s hospital | Cross-sectional qualitative retrospective narrative interviews | n = 25; 15 mothers and fathers, 10 health care providers | Not documented | CHD | Good |
| Clark, 1999 [47] | USA, tertiary academic hospital |
Prospective longitudinal qualitative interviews Secondary analysis of part of a larger study |
n = 8 fathers | 87.5% married parents | CHD | Good |
| Rempel, 2013 [50] | Canada, tertiary cardiac hospital | Cross-sectional qualitative grounded theory interview study | n = 53; 15 mothers, 10 fathers and 28 grandparents 17 grandmothers and 11 grandfathers, 15 young children | 0% minority ethnicity, 100% Canadian | HLHS | Good |
| Thomi, 2019 [57] | Switzerland, tertiary academic children’s hospital | Prospective cross-sectional qualitative interviews | n = 18; 9 mothers and 9 fathers | 0% minority ethnicity, 100% Swiss/Other European | CCHD | Good |
| Leuthner, 2003 [40] | USA, tertiary cardiac hospital, and obstetric unit | Cross-sectional qualitative focus group interviews (retrospective narrative) | N = 16; 4 parent focus groups; 9 mothers and 7 fathers (1 termination) | 0% minority ethnicity, 100% Caucasian | CHD | Good |
| Bratt, 2015 [56] | Sweden, tertiary fetal unit | Prospective cross-sectional qualitative interviews | n = 12; 6 mothers and 6 fathers | 100% coupled parents, 0% single parents | CHD | Good |
USA United States of America, PICU Paediatric Intensive Care Unit, UK United Kingdom, CHD Congenital Heart Disease, CCHD Critical Congenital Heart Disease, HLHS Hypoplastic left heart syndrome, Minority ethnicity = non-white and immigrants