Table 1 Open in new tab Characteristics...

Study ID

Country

Parent ratio

Child age

Diagnosis

Study design

Data collection

Data analysis

Bright et al.³⁴

Australia

63 fathers

42–202 days

Congenital heart disease

Retrospective mixed method

Semi-structured interview questionnaire

Thematic analysis

Cantwell-Bartl and Tibballs¹⁴

Australia

16 mothers 13 fathers

1–19 years

Hypoplastic left heart syndrome

Retrospective mixed method

Semi-structured interview questionnaire

Thematic analysis

Gaskin³⁵

United Kingdom

12 mothers 4 fathers

Not reported

Congenital heart disease

Prospective longitudinal mixed method

Semi-structured interview questionnaire

Thematic analysis

Golfenshtein et al.¹⁵

USA

14 mothers

11–63 days

Congenital heart disease

Qualitative

Semi structured focused group

Content analysis

Harvey et al.³⁶

USA

8 mothers

0–5 months

Congenital heart disease

Retrospective and prospective qualitative

Journaling

Colaizzi’s steps to analysis of phenomenological data

Hill et al.³⁷

USA

3 mothers 3 fathers

0–12 months

Congenital heart disease (complex)

Prospective longitudinal qualitative

Semi-structured Interview (secondary data)

Content analysis

Jackson et al.³⁸

Australia

15 mothers 2 fathers

1–11+

Congenital heart disease

Qualitative

Semi-structured Interview

Content analysis

Kim and Cha³⁹

South Korea

16 fathers

0–1 month

Congenital heart disease

Qualitative

Semi-structured Interview

Colaizzi’s phenomenological data analysis

Kosta et al.¹⁶

Australia

154

91 mothers 63 fathers

0–4 months

Congenital heart disease

Retrospective mixed method

Semi-structured Interview

Thematic analysis

Lopez et al.¹⁷

USA

9 mothers 1 father

12 days –5 years

Congenital heart disease

Prospective mixed method

Semi-structured interview questionnaire

Thematic analysis

Barreto et al.⁴⁰

Brazil

7 mothers 4 fathers

15 days – 15 months

Congenital heart disease

Qualitative

Semi-structured interview

Thematic analysis

Nakazuru et al.⁴¹

Japan

11 mothers

4 months – 5 years

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Content analysis

Nascimento et al.⁴²

Brazil

17 mothers

1 month –5 years

Congenital heart disease

Prospective qualitative

Semi-structured interview

Content analysis

Obas et al.¹⁸

Canada

9 mothers

2 months – 14 years

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Thematic analysis

Re et al.¹⁹

Australia

27 mothers

0–2 months

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Thematic analysis

Rempel et al.⁴³

Canada

15 mothers 10 fathers 28 grandparents

6–54 months

Hyperplastic left heart syndrome

Retrospective qualitative

Semi-structured interview

Grounded theory analysis

Rempel et al.⁴⁴

Canada

15 mothers 10 fathers 28 grandparents

6–54 months

Hyperplastic left heart syndrome

Retrospective qualitative

Semi-structured interview (secondary data)

Grounded theory analysis

Rempel et al.⁴⁵

Canada

24 mothers 17 fathers

2–60 months

Hyperplastic left heart syndrome

Retrospective qualitative

Semi-structured interview (secondary data)

Thematic analysis

Sabzevari et al.⁴⁶

Iran

16 mothers 1 father 1 nurse

7 months–14 years

Congenital heart disease

Qualitative

Semi-structured interview

Content analysis (Graneheim and Landman)

Salgado et al.²⁰

Brazil

5 mothers 1 father

0–10 years

Congenital heart disease

Qualitative

Semi-structured interview observation

Content analysis And Thematic analysis

Sikora and Janusz²¹

Poland

4 mothers

0–1 years

Congenital heart disease

Qualitative

Narrative interviews

Thematic analysis

Rabelo et al.⁴⁷

Brazil

21 mothers

Not reported

Cardio-myopathy

Qualitative

Semi-structured interview

Content analysis

Simeone et al.⁴⁸

Italy

9 mothers 7 fathers

Average age of 3 years

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Phenomenological data analysis

Sjostrom-Strand et al.²²

Sweden

8 mothers 2 fathers

0–5 years

Hyperplastic left heart syndrome

Retrospective qualitative

Semi-structured interview

Content analysis

Sood et al.⁴⁹

USA

20 mothers 14 fathers

12–47 months

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Thematic analysis

Wei et al.²³

USA

10 mothers 3 fathers

0–24 months

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Phenomenological data analysis

Wei et al.²⁴

USA

10 mothers 3 fathers

0–24 months

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Content analysis

Study ID

Country

Parent ratio

Child age

Diagnosis

Study design

Data collection

Data analysis

Bright et al.³⁴

Australia

63 fathers

42–202 days

Congenital heart disease

Retrospective mixed method

Semi-structured interview questionnaire

Thematic analysis

Cantwell-Bartl and Tibballs¹⁴

Australia

16 mothers 13 fathers

1–19 years

Hypoplastic left heart syndrome

Retrospective mixed method

Semi-structured interview questionnaire

Thematic analysis

Gaskin³⁵

United Kingdom

12 mothers 4 fathers

Not reported

Congenital heart disease

Prospective longitudinal mixed method

Semi-structured interview questionnaire

Thematic analysis

Golfenshtein et al.¹⁵

USA

14 mothers

11–63 days

Congenital heart disease

Qualitative

Semi structured focused group

Content analysis

Harvey et al.³⁶

USA

8 mothers

0–5 months

Congenital heart disease

Retrospective and prospective qualitative

Journaling

Colaizzi’s steps to analysis of phenomenological data

Hill et al.³⁷

USA

3 mothers 3 fathers

0–12 months

Congenital heart disease (complex)

Prospective longitudinal qualitative

Semi-structured Interview (secondary data)

Content analysis

Jackson et al.³⁸

Australia

15 mothers 2 fathers

1–11+

Congenital heart disease

Qualitative

Semi-structured Interview

Content analysis

Kim and Cha³⁹

South Korea

16 fathers

0–1 month

Congenital heart disease

Qualitative

Semi-structured Interview

Colaizzi’s phenomenological data analysis

Kosta et al.¹⁶

Australia

154

91 mothers 63 fathers

0–4 months

Congenital heart disease

Retrospective mixed method

Semi-structured Interview

Thematic analysis

Lopez et al.¹⁷

USA

9 mothers 1 father

12 days –5 years

Congenital heart disease

Prospective mixed method

Semi-structured interview questionnaire

Thematic analysis

Barreto et al.⁴⁰

Brazil

7 mothers 4 fathers

15 days – 15 months

Congenital heart disease

Qualitative

Semi-structured interview

Thematic analysis

Nakazuru et al.⁴¹

Japan

11 mothers

4 months – 5 years

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Content analysis

Nascimento et al.⁴²

Brazil

17 mothers

1 month –5 years

Congenital heart disease

Prospective qualitative

Semi-structured interview

Content analysis

Obas et al.¹⁸

Canada

9 mothers

2 months – 14 years

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Thematic analysis

Re et al.¹⁹

Australia

27 mothers

0–2 months

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Thematic analysis

Rempel et al.⁴³

Canada

15 mothers 10 fathers 28 grandparents

6–54 months

Hyperplastic left heart syndrome

Retrospective qualitative

Semi-structured interview

Grounded theory analysis

Rempel et al.⁴⁴

Canada

15 mothers 10 fathers 28 grandparents

6–54 months

Hyperplastic left heart syndrome

Retrospective qualitative

Semi-structured interview (secondary data)

Grounded theory analysis

Rempel et al.⁴⁵

Canada

24 mothers 17 fathers

2–60 months

Hyperplastic left heart syndrome

Retrospective qualitative

Semi-structured interview (secondary data)

Thematic analysis

Sabzevari et al.⁴⁶

Iran

16 mothers 1 father 1 nurse

7 months–14 years

Congenital heart disease

Qualitative

Semi-structured interview

Content analysis (Graneheim and Landman)

Salgado et al.²⁰

Brazil

5 mothers 1 father

0–10 years

Congenital heart disease

Qualitative

Semi-structured interview observation

Content analysis And Thematic analysis

Sikora and Janusz²¹

Poland

4 mothers

0–1 years

Congenital heart disease

Qualitative

Narrative interviews

Thematic analysis

Rabelo et al.⁴⁷

Brazil

21 mothers

Not reported

Cardio-myopathy

Qualitative

Semi-structured interview

Content analysis

Simeone et al.⁴⁸

Italy

9 mothers 7 fathers

Average age of 3 years

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Phenomenological data analysis

Sjostrom-Strand et al.²²

Sweden

8 mothers 2 fathers

0–5 years

Hyperplastic left heart syndrome

Retrospective qualitative

Semi-structured interview

Content analysis

Sood et al.⁴⁹

USA

20 mothers 14 fathers

12–47 months

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Thematic analysis

Wei et al.²³

USA

10 mothers 3 fathers

0–24 months

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Phenomenological data analysis

Wei et al.²⁴

USA

10 mothers 3 fathers

0–24 months

Congenital heart disease

Retrospective qualitative

Semi-structured interview

Content analysis

Table 1

Open in new tab

Characteristics of included studies

Study ID	Country	n	Parent ratio	Child age	Diagnosis	Study design	Data collection	Data analysis
Bright et al.³⁴	Australia	63	63 fathers	42–202 days	Congenital heart disease	Retrospective mixed method	Semi-structured interview questionnaire	Thematic analysis
Cantwell-Bartl and Tibballs¹⁴	Australia	29	16 mothers 13 fathers	1–19 years	Hypoplastic left heart syndrome	Retrospective mixed method	Semi-structured interview questionnaire	Thematic analysis
Gaskin³⁵	United Kingdom	16	12 mothers 4 fathers	Not reported	Congenital heart disease	Prospective longitudinal mixed method	Semi-structured interview questionnaire	Thematic analysis
Golfenshtein et al.¹⁵	USA	14	14 mothers	11–63 days	Congenital heart disease	Qualitative	Semi structured focused group	Content analysis
Harvey et al.³⁶	USA	8	8 mothers	0–5 months	Congenital heart disease	Retrospective and prospective qualitative	Journaling	Colaizzi’s steps to analysis of phenomenological data
Hill et al.³⁷	USA	6	3 mothers 3 fathers	0–12 months	Congenital heart disease (complex)	Prospective longitudinal qualitative	Semi-structured Interview (secondary data)	Content analysis
Jackson et al.³⁸	Australia	17	15 mothers 2 fathers	1–11+	Congenital heart disease	Qualitative	Semi-structured Interview	Content analysis
Kim and Cha³⁹	South Korea	16	16 fathers	0–1 month	Congenital heart disease	Qualitative	Semi-structured Interview	Colaizzi’s phenomenological data analysis
Kosta et al.¹⁶	Australia	154	91 mothers 63 fathers	0–4 months	Congenital heart disease	Retrospective mixed method	Semi-structured Interview	Thematic analysis
Lopez et al.¹⁷	USA	10	9 mothers 1 father	12 days –5 years	Congenital heart disease	Prospective mixed method	Semi-structured interview questionnaire	Thematic analysis
Barreto et al.⁴⁰	Brazil	11	7 mothers 4 fathers	15 days – 15 months	Congenital heart disease	Qualitative	Semi-structured interview	Thematic analysis
Nakazuru et al.⁴¹	Japan	11	11 mothers	4 months – 5 years	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Content analysis
Nascimento et al.⁴²	Brazil	17	17 mothers	1 month –5 years	Congenital heart disease	Prospective qualitative	Semi-structured interview	Content analysis
Obas et al.¹⁸	Canada	9	9 mothers	2 months – 14 years	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Thematic analysis
Re et al.¹⁹	Australia	27	27 mothers	0–2 months	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Thematic analysis
Rempel et al.⁴³	Canada	53	15 mothers 10 fathers 28 grandparents	6–54 months	Hyperplastic left heart syndrome	Retrospective qualitative	Semi-structured interview	Grounded theory analysis
Rempel et al.⁴⁴	Canada	53	15 mothers 10 fathers 28 grandparents	6–54 months	Hyperplastic left heart syndrome	Retrospective qualitative	Semi-structured interview (secondary data)	Grounded theory analysis
Rempel et al.⁴⁵	Canada	41	24 mothers 17 fathers	2–60 months	Hyperplastic left heart syndrome	Retrospective qualitative	Semi-structured interview (secondary data)	Thematic analysis
Sabzevari et al.⁴⁶	Iran	17	16 mothers 1 father 1 nurse	7 months–14 years	Congenital heart disease	Qualitative	Semi-structured interview	Content analysis (Graneheim and Landman)
Salgado et al.²⁰	Brazil	6	5 mothers 1 father	0–10 years	Congenital heart disease	Qualitative	Semi-structured interview observation	Content analysis And Thematic analysis
Sikora and Janusz²¹	Poland	4	4 mothers	0–1 years	Congenital heart disease	Qualitative	Narrative interviews	Thematic analysis
Rabelo et al.⁴⁷	Brazil	21	21 mothers	Not reported	Cardio-myopathy	Qualitative	Semi-structured interview	Content analysis
Simeone et al.⁴⁸	Italy	16	9 mothers 7 fathers	Average age of 3 years	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Phenomenological data analysis
Sjostrom-Strand et al.²²	Sweden	10	8 mothers 2 fathers	0–5 years	Hyperplastic left heart syndrome	Retrospective qualitative	Semi-structured interview	Content analysis
Sood et al.⁴⁹	USA	34	20 mothers 14 fathers	12–47 months	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Thematic analysis
Wei et al.²³	USA	13	10 mothers 3 fathers	0–24 months	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Phenomenological data analysis
Wei et al.²⁴	USA	13	10 mothers 3 fathers	0–24 months	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Content analysis

Study ID	Country	n	Parent ratio	Child age	Diagnosis	Study design	Data collection	Data analysis
Bright et al.³⁴	Australia	63	63 fathers	42–202 days	Congenital heart disease	Retrospective mixed method	Semi-structured interview questionnaire	Thematic analysis
Cantwell-Bartl and Tibballs¹⁴	Australia	29	16 mothers 13 fathers	1–19 years	Hypoplastic left heart syndrome	Retrospective mixed method	Semi-structured interview questionnaire	Thematic analysis
Gaskin³⁵	United Kingdom	16	12 mothers 4 fathers	Not reported	Congenital heart disease	Prospective longitudinal mixed method	Semi-structured interview questionnaire	Thematic analysis
Golfenshtein et al.¹⁵	USA	14	14 mothers	11–63 days	Congenital heart disease	Qualitative	Semi structured focused group	Content analysis
Harvey et al.³⁶	USA	8	8 mothers	0–5 months	Congenital heart disease	Retrospective and prospective qualitative	Journaling	Colaizzi’s steps to analysis of phenomenological data
Hill et al.³⁷	USA	6	3 mothers 3 fathers	0–12 months	Congenital heart disease (complex)	Prospective longitudinal qualitative	Semi-structured Interview (secondary data)	Content analysis
Jackson et al.³⁸	Australia	17	15 mothers 2 fathers	1–11+	Congenital heart disease	Qualitative	Semi-structured Interview	Content analysis
Kim and Cha³⁹	South Korea	16	16 fathers	0–1 month	Congenital heart disease	Qualitative	Semi-structured Interview	Colaizzi’s phenomenological data analysis
Kosta et al.¹⁶	Australia	154	91 mothers 63 fathers	0–4 months	Congenital heart disease	Retrospective mixed method	Semi-structured Interview	Thematic analysis
Lopez et al.¹⁷	USA	10	9 mothers 1 father	12 days –5 years	Congenital heart disease	Prospective mixed method	Semi-structured interview questionnaire	Thematic analysis
Barreto et al.⁴⁰	Brazil	11	7 mothers 4 fathers	15 days – 15 months	Congenital heart disease	Qualitative	Semi-structured interview	Thematic analysis
Nakazuru et al.⁴¹	Japan	11	11 mothers	4 months – 5 years	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Content analysis
Nascimento et al.⁴²	Brazil	17	17 mothers	1 month –5 years	Congenital heart disease	Prospective qualitative	Semi-structured interview	Content analysis
Obas et al.¹⁸	Canada	9	9 mothers	2 months – 14 years	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Thematic analysis
Re et al.¹⁹	Australia	27	27 mothers	0–2 months	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Thematic analysis
Rempel et al.⁴³	Canada	53	15 mothers 10 fathers 28 grandparents	6–54 months	Hyperplastic left heart syndrome	Retrospective qualitative	Semi-structured interview	Grounded theory analysis
Rempel et al.⁴⁴	Canada	53	15 mothers 10 fathers 28 grandparents	6–54 months	Hyperplastic left heart syndrome	Retrospective qualitative	Semi-structured interview (secondary data)	Grounded theory analysis
Rempel et al.⁴⁵	Canada	41	24 mothers 17 fathers	2–60 months	Hyperplastic left heart syndrome	Retrospective qualitative	Semi-structured interview (secondary data)	Thematic analysis
Sabzevari et al.⁴⁶	Iran	17	16 mothers 1 father 1 nurse	7 months–14 years	Congenital heart disease	Qualitative	Semi-structured interview	Content analysis (Graneheim and Landman)
Salgado et al.²⁰	Brazil	6	5 mothers 1 father	0–10 years	Congenital heart disease	Qualitative	Semi-structured interview observation	Content analysis And Thematic analysis
Sikora and Janusz²¹	Poland	4	4 mothers	0–1 years	Congenital heart disease	Qualitative	Narrative interviews	Thematic analysis
Rabelo et al.⁴⁷	Brazil	21	21 mothers	Not reported	Cardio-myopathy	Qualitative	Semi-structured interview	Content analysis
Simeone et al.⁴⁸	Italy	16	9 mothers 7 fathers	Average age of 3 years	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Phenomenological data analysis
Sjostrom-Strand et al.²²	Sweden	10	8 mothers 2 fathers	0–5 years	Hyperplastic left heart syndrome	Retrospective qualitative	Semi-structured interview	Content analysis
Sood et al.⁴⁹	USA	34	20 mothers 14 fathers	12–47 months	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Thematic analysis
Wei et al.²³	USA	13	10 mothers 3 fathers	0–24 months	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Phenomenological data analysis
Wei et al.²⁴	USA	13	10 mothers 3 fathers	0–24 months	Congenital heart disease	Retrospective qualitative	Semi-structured interview	Content analysis

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