Parents’ Journeys of Mastery and Knowledge Construction After Their Infant’s First Stage of Surgery for Complex Congenital Heart Disease

Figures & data

Table 1. Interview topic guide.

Topic guide: Face to face Interviews with parents participating in the study before discharge from hospital (Baseline T0).

How do you feel about the transition of going home with your infant for the first time?

a. Perception of the transition (change in role, affect, source, timing, onset, duration, degree of stress)

b. What support systems do they have (intimate, family, friends, institutional, physical environment)

c. Individual characteristics (parent demographics, previous experiences, knowledge and understanding)

Topic Guide: Telephone interviews after discharge (T1, T2) and face to face or telephone (T3)

How do you feel about the transition and adaptation to being at home with your infant now?

− Balance of resources and deficits

− Differences in pre and post transition environment

− Perceptions (change in role, affect, source, timing, onset, duration, degree of stress)

− What support systems do they have (intimate, family, friends, institutional, physical environment)

− Individual characteristics (parent demographics, previous experiences, knowledge and understanding)

Table 2. The number of completed self-report tools and interviews at T0, T1, T2, T3.

	Mothers Completed MCQ	Fathers completed MCQ	Mothers completed interviews alone	Fathers completed interview alone	Mother and father interviewed together
T0	12 (100%)	4 (100%)	8		4
T1	9 (75%)	4 (100%)	7	1	2
T2	7 (58%)	3 (75%)	4		3
T3	9 (75%)	2 (50%)	7		2
TOTAL	37	13	26	1	11

Reasons for non-completion:

Infant was not discharged home, interviews not conducted at T1, 2 or 3.

Infants have been readmitted to hospital at T2 (n = 2).

Mothers not contactable at T1 (n = 2), T2 (n = 2), T3 (n = 2).

Father not available at T1 (n = 1 for interview but completed MCQ), T2 (n = 1), T3 (n = 2).

Table 3. Parents’ and infants’ demographics data.

Demographic	Mother n (%)	Father n (%)
Parent’s Age
20–25	3 (25%)
26–30	4 (33.3%)
31–40	5 (41.7%)
Not known		4 (100%)
Multipara	7 (58.3%)
Parent’s Health
Fit and healthy	10 (83.3%)	2 (50%)
Chronic illness (e.g. Diabetes, Asthma, Adult Heart Disease e.g. high BP)	1 (8.3%)	1 (25%)
Mental Health problems (e.g. Depression, Schizophrenia)	1 (8.3%)	1 (25%)
Living Arrangements
Living with partner (married or unmarried)	11 (91.6%)	3 (75%)
Not stated	1 (8.3%)	1 (25%)
Distance from home to the specialist heart hospital
Less than 20 miles	6 (50%)	1 (25%)
20–30 miles	2 (16.7%)
30–40 miles	2 (16.7%)	1 (25%)
50–100 miles	2 (16.7%)	2 (50%)
Employment
Employed for wages	0	2 (50%)
Self-employed	1 (8.3%)	1 (25%)
A homemaker	8 (66.7%)	0
Maternity/paternity leave	3 (25%)	0
Sick leave	0	1 (25%)
Education
School (up to 16 years)	4 (33.3%)
School/College (up to 19 years)
Higher Education	5 (41.6%)	2 (50%)
Not known	3 (25%)	2 (50%)
Ethnicity
White – British	9 (75%)	1 (25%)
White – Irish	1 (8.3%)
White – European	0	1 (25%)
Black British	1 (8.3%)
Black Caribbean	1 (8.3%)	1 (25%)
British Asian	0	1 (25%)
Infant’s Birth and Medical Information
Demographic	n(%)
Time of Diagnosis
Antenatal	11 (91.6%)
Postnatal	1 (8.3%)
Female	7 (58.3%)
Male	5 (41.6%)
Gestation
35+	1 (8.3%)
36+	1 (8.3%)
38+	4 (33.3%)
39+	3 (25%)
40+	2 (16.6%)
42+	1 (8.3%)
Birth weight
2–2.5 Kg	4 (33.3%)
2.6–3 Kg	2 (16.6%)
3.1–3.5 Kg	4 (33.3%)
4.1–4.5 Kg	2 (16.6%)
Diagnosis
Hypoplastic Left Heart Syndrome	10 (83.3%)
Hypoplastic Right Heart	1 (8.3%)
Tetralogy of Fallot	1 (8.3%)
Other non-cardiac defects	5 (41.6%)
Genetic abnormality	3 (25%)
Specialist Hospital Admission Route
Retrieval team*	12 (100%)
Pre-operative management
Mechanical ventilation	6 (50%)
Prostaglandin infusion	12 (100%)
Inotropic support	5 (41.6%)
Acidosis	8 (66.6%)

*retrieved from the maternity hospital and transferred to children’s hospital by specialist pediatric intensive care retrieval team.

Table 4. Illustrative quotes.

Learning from the time of diagnosis

I didn’t know anything about it at all, but now yeah, especially when they referred me to the women’s hospital and I saw the doctor there, [name], yeah and she was really really good, she went into a lot of detail and explained it really well (mother 9, T0, MCQ 58)

I sort of deal with well what is it you know, what can they do, what can’t they do and all that sort of side of it so I don’t, whether it helped or not I don’t know, whether sometimes knowledge can be you know, too much (father D, T0, MCQ 50).

Dissociation of thoughts

… it feels like I’m still in a nightmare that I’ll wake up any minute and I’ll still be pregnant (mother 1, T0, MCQ 70).

… it’s like a standstill, you’re like ‘where am I?’ you’re on like a standstill, I was just focused on that one cot. I wasn’t even daring to look around me. Oh, God no, all I seen was these big machines and I thought I’m not even looking, I was like I’m not looking nowhere, my eyes, it was horrible (mother 11, T0, MCQ 52).

Experiential learning before discharge

you know, to try and get into my brain exactly what is the matter with him, what they’ve done, what procedure was done… and what the surgical procedure was done and what the next one and so like from a medical point of view… I know what’s going on with him…. I don’t fully understand it because I’m not medical, but to try and get in my head so I know exactly what to look for when we are at home (mother 1, T0, MCQ 70)

“I think from being here I’ve picked up some of the tools and how to spot and doing simple things like putting a hand on her and checking her breathing” (mother 7, T0, MCQ 60)

The liminal phase

I think because we left it so late going home even though we were discharged like midday, but we didn’t actually get home until like half past 8 (father D, T3, MCQ 69)

… .[we were] clinging on to straws (mother 10, T3, MCQ 70)

Experiential learning at home

I do a bit more for him at home, I just basically get on with it at home …. it just … it just feels more comfortable and I feel more confident in my abilities to like do his medicines and things like that now (Mother 2, T1, MCQ 49)

I did the school run and everything and he’s in bed so I’ve been able to cope on my own with 3 medications going down, feeding her, sorting (child) out, getting (child and baby) into the car by half past 8 so I can do it (mother 10, T1, MCQ 70)

now we feel confident enough that we know the signs to check for and the traffic light system ourselves and kind of know where it would be in the book (Mother 5, T2, MCQ 64)

we’re obviously constantly learning what (baby) needs and we know when she’s grizzly and what to check and things like that … .we’re at a stage where I think we sort of know her more than anything, know what’s normal for her (Father D, T2, MCQ 69).

Learning in different environments

I don’t really like taking him out at the moment, because of the cold and things like that, so when he gets a bit bigger and his immune system is a bit better then yeah (mother 8, T1, MCQ 70)

we’ve been quite fortunate, the timings been quite good in that the new shopping precinct has just opened up, so we went in there to have a look round and we’ve been visiting family and stuff (father D, T1, MCQ 62)

we went to [shop name] just now and there was a kid coughing there and it was like ‘oh keep away from me!’ so we moved (mother 10, T1, MCQ 70)

I find it easier to go to someone’s house rather than out to town or something, it’s more comfortable to give his meds and stuff (mother 9, T2, MCQ 65).

Other sources of Support

no one else understands (mother 10, T2, MCQ 70)

it’s called Young at Heart and it’s children’s hospital heart charity and I’m in their group on Facebook but I haven’t really spoken yet but I’ve looked in there and stuff and then I’m in a group on baby centre as well (mother 9, T2, MCQ 65)

I don’t know, like it’s kind of support you see; just knowing that other people in common knowing exactly what you’re going through, because friends and family support you, but they can’t fully understand it (mother 9, T3, MCQ 69)

… we get a lot [support] on Facebook don’t we really, you can see everyone going through what you’re going through and if you’re not sure on something you can ask them you know, they might have had it or … (mother 3, T3, MCQ 68).

… a few days ago I started to look into child care and him going to school and things and obviously I went onto the LHM website and I kind of realised how daunting it can actually be having your child go to school and things like that, and making sure that they’re aware of the situation and they can cope when something happens and things like that so … getting advice from parents that have gone through it, you know, it’s very helpful (mother 8, T3, MCQ 68).

Process of integration

[I’m] definitely more aware of different things regarding his condition, [his] heart … it opened my eyes to things … . I think I was angry and I was angry when I went home because I thought why didn’t they pick it up? [antenatally]. But then I just thought one day, well it wouldn’t have made any difference … we’d have still been here for four months … So I’d have known more about it and I probably wouldn’t have enjoyed the pregnancy … (mother 1 T3 MCQ 66)

Figure 1. A conceptual framework: Parenting through transitions - hospital to home.