Table 1 Characteristics of studies included in the qualitative synthesis

Boman et al., 2013 [31]

Sweden

To explore and discuss how fathers involved in caring for a child with T1D experience support from paediatric diabetes teams in everyday life.

n = 11 (all fathers)

Age: 37–51 years

Cohabiting with mother: n = 7

Higher education: n = 5

n = 11 (≤8yo n = 6)

Age: 4–16 years

Diabetes duration: 2–8 years

Online focus group discussion (n = 6 fathers); semi-structured interviews (n = 8 fathers) (mix of phone and face-to-face); both (n = 3 fathers)

Constructivist grounded theory analysis

Elissa et al., 2017 [35]

Palestine

To explore the experiences of daily life in children with T1D and their parents living in the West Bank in Palestine

n = 10 (6 mothers)

Age mothers: 28–49 years

Age fathers: 32–42 years

Cohabiting: all

Higher education: n = 3

In employment: n = 4 (fathers)

Rural or camp living: n = 4

n = 10

Age: 8–16 years

Diabetes duration: < 5 years (n = 3); 1–5 years (n = 4); > 5 years (n = 3)

Face-to-face interviews

Qualitative content analysis as per Graneheim & Lundman (2004)

Iversen et al., 2018 [33]

Norway

To explore the lived experience of being mothers and fathers of a young child with T1D aged 1–7 who had had the diagnosis for at least 1 year.

n = 15 (8 mothers)

Age mothers: 26–40 years (m = 30)

Age fathers: 29–46 (m = 38)

Cohabiting: 7 couples, 1 single mother

In employment: all

n = 8

Age: 1–7 years

Age at diagnosis: 1–5 years

Diabetes duration: 1–6 years

MDI (pen): n = 1

CSII: n = 7

In-depth face-to-face interviews (one by telephone)

Interpretative phenomenological methodology as described by Van Manen

Khandan et al., 2018 [34]

Iran

To explore the experiences of mothers with diabetic children after the transfer of caring role

n = 11 (all mothers)

Age: 30–48 years

Cohabiting: n = 9

Higher education: n = 8

In employment: n = 5

n = 11

Age: 7–14 years (≤8yo n = 3)

Diabetes duration: 12–96 months

Semi-structured and open-ended face-to-face interviews

Analysis as per Colaizzi

Lawton et al., 2015 [28]

UK

To explore the difficulties parents encounter in trying to achieve clinically recommended blood glucose levels.

n = 54 (38 mothers)

Age all parents: 25–51 years (m = 40.6 ± 6.1)

Cohabiting: 70%

Higher education: 27.8%

In employment: 68.5%

n = 41

Age: 2–12 years (m = 8.4 ± 2.5)

Age at diagnosis: 3–10 years (m = 5.2 ± 2.1)

Diabetes duration: 1–11 years (m = 4.1 ± 2.9)

CSII: 31.7%

In-depth face-to-face interviews

General theoretical and procedural direction taken from Grounded Theory research

Lindström et al., 2017 [32]

Sweden

To experience how mothers experiencing burnout describe mothering a child with diabetes, with special focus on their need for control and self-esteem.

n = 21 (all mothers)

Age: 31–50 years (m = 41)

Cohabiting: 85.7%

Higher education: 71.5%

In employment: 90.4%

n = 22

Age: 3–17 years (m = 10.7)

Diabetes duration: 1.5–15 years (m = 5.3)

CSII: 77%

Semi-structured, face-to-face interviews

Inductive content analysis

Marshall et al., 2009 [30]

UK

To explore and describe the experiences of children and their parents living with T1D from diagnosis onwards

n = 11 (10 mothers)

Ethnicity: Asian, Eastern European, Jamaican, Irish, English backgrounds

n = 10 (≤8yo n = 4)

Age: 4–17 years

Diabetes duration: 10 months – 8 years

Conversational interviews

Van Manen’s phenomenological approach to thematic coding

Patton et al., 2016 [26]

US

To describe parents’ perceptions of healthful eating for T1D in families of young children and identify factors related to parents’ dietary management in young children.

n = 23 (21 mothers)

Age all parents: 27–49 years (m = 35.7 ± 5.1)

Married: 83%

Higher education: 87%

n = not specified

Age: 2–6.9 years (m = 4.6 ± 1.3)

Ethnicity: 78% non-hispanic white, 13% hispanic, 9% black

Diabetes duration: m = 2.0 ± 1.5 years

CSII: 87%

Semi-structured, face-to-face interviews

Guided by a grounded theory approach

Perez et al., 2018 [27]

US

To explore how parents negotiate the uncertainty surrounding T1D

n = 29 (mother/father not specified)

Age all parents: 33–50 (m = 44)

Ethnicity: all Caucasian/white

Married: n = 28 (97%)

In full-time employment: n = 18 (stay-at-home: n = 11)

Most identified household income as middle to upper-middle class

n = 30

Age: 2–17 years (m = 10.9)

Age at diagnosis: 13 months - 13 years (m = 6.5 years)

Diabetes duration: 4 months - 10 years (m = 4.39)

Interviews (by phone n = 26)

Thematic analysis as per Braun & Clarke (2006)

Rankin et al., 2015 [29]

UK

To explore parents’ experiences of using an insulin pump to manage their child’s diabetes, including their views about the benefits and challenges for themselves and their child.

n = 19 (13 mothers)

Age all parents: 34–44 years (m = 40.1 ± 3.7)

Ethnicity: all white British

Married or cohabiting: n = 18

Higher education: n = 9

In employment: n = 12

n = 14

Age: 3–12 years (m = 8.4 ± 2.8)

Age at diagnosis: 1–6 years (m = 3.8 ± 2.1)

Length of time on pump: 1–4 years (m = 2.2 ± 1.2)

Face-to-face interviews

Thematic analysis using the method of constant comparison

Sullivan-Bolyai et al., 2003 [23]

US

To provide a detailed description of day-to-day management experiences of mothers raising young children under 4 years with T1D.

n = 28 (all mothers)

Age: m = 33 ± 5.24 years

Ethnicity: 89% white

Married: 86%

Education: m = 15 ± 2.5 years

Not working outside of home: n = 15

n = 28

Age: m = 2.9 ± 0.6 years

Diabetes duration: m = 1.25 ± 0.7 years

Face-to-face interviews

Naturalistic inquiry

Sullivan-Bolyai et al., 2004 [24]

US

To describe the experiences of parents managing the T1D of their young children using an insulin pump.

n = 21 (14 mothers)

Age all parents: m = 38 ± 3 years

Ethnicity: all Caucasian

Married: n = 20

Education: m = 16 ± 2 years

n = 16

Age: 2–11 years (m = 7 ± 2 years

Length of time on pump: 3–36 months (m = 16 ± 11)

In-depth, face-to-face interviews

Qualitative content analysis as described by Sandelowski

Sullivan-Bolyai et al., 2006 [25]

US

To describe fathers’ experiences in parenting and managing the care of their young children’s day-to-day diabetes regimen.

n = 14 (all fathers)

Age: m = 36 ± 2 years

Ethnicity: all white

Married: all

Education: m = 16 ± 2 years

In employment: all

n = 15

Age: 2–8 years (m = 5 ± 2)

Diabetes duration: 2 weeks – 3 years (m = 1.4 ± 0.8 months)

Face-to-face interviews

Qualitative content analysis

Watt, 2017 [22]

Canada

To explore the emotion work of doing worry that parents engage in when caring for their children with diabetes.

n = 7 (5 mothers)

Age all parents: 34–53 years (m = 44)

All 2-parent, middle class families

Education: all higher education

n = not specified

Age: 18 years or younger

Age at diagnosis: 9 months – 14 years

In-depth interviews in the context of institutional ethnography (not clear if face-to-face or phone)

Analysis guided by Smith’s (2005) conception of work and analytic questions suggested by IE scholars (McCoy, 2006)