Psychological needs of parents of children with complicated congenital heart disease after admitting to pediatric intensive care unit: A questionnaire study

Table 1 General information on parents of the children

Measurement index	Variable	n
Age (yr)	≤ 25	28
	26-35	120
	≥ 36	52
Sex	Male	63
	Female	137
Relationship to the child	Mother	137
	Father	61
	Grandparents	2
	Babysitter	0
	Other	0
Education level	Junior high school and below	47
	Technical secondary school or high school	56
	College or undergraduate	91
	Master degree and above	6
Occupation	Medical staff	7
	Enterprise but not medical staff	47
	Unemployment	33
	Freelancer	78
	Farming	16
	Other	19
Monthly family income (RMB)	Below 3000	30
	3000-5999	85
	> 6000-10000	37
	More than 10000	48
Home	City	69
	Rural area	87
	Town	44
The only child	Yes	83
	No	117
Religious beliefs	Yes	23
	No	117

Table 2 Scores of items in the M-CCFNI scale

Dimension	Item content	Score (mean ± SD)
Medical staff support	1 Hope that before I enter the ICU for the first time, the medical staff can introduce me to the ICU	3.62 ± 0.58
	4 Hope to be guided by medical staff when visiting the ICU	3.63 ± 0.52
	6 Hope that medical staff will take the initiative to inform parents of the child’s condition and current situation	3.76 ± 0.46
	12 When the condition changes, someone can call the parents in time	3.82 ± 0.39
	15 Hope to know other experts who can solve children's problems	3.53 ± 0.66
	23 Hope to provide spiritual and psychological support	3.61 ± 0.58
	24 Hope that medical staff treat patients as relatives and sincerely care and take care of patients	3.78 ± 0.44
	28 I hope to talk to the ICU medical staff about my bad emotions, such as guilt, anger, etc.	2.97 ± 1.02
	29 Hope that medical staff will help like friends	3.54 ± 0.67
	30 Hope that medical staff can patiently explain, comfort and psychologically counsel	3.59 ± 0.63
	36 Sometimes family members are emotionally upset for the patient, and I hope the medical staff can understand	3.53 ± 0.63
Parents' own comfort	8 Hope that family members have comfortable rest facilities in the waiting room	3.12 ± 0.89
	13 Hope that there is a special waiting room for parents outside the ICU	3.00 ± 1.05
	19 Hope that there will be a special waiting room for family members outside the ICU	3.48 ± 0.71
	26 Hope that the hospital has humanized management and handles the relationship between doctors and patients’ family members	3.67 ± 0.51
Getting information	3 Hope to communicate with the doctor every day	3.69 ± 0.52
	7 Can understand the general information of the patient's doctor in charge and responsible nurse, such as job title, experience, level, etc.	3.52 ± 0.67
	9 I hope to communicate with the same nurse every day to understand the patient’s condition	3.53 ± 0.66
	14 Needs for understanding disease-related knowledge	3.63 ± 0.54
	16 Know what kind of information needs to be asked of staff	3.56 ± 0.63
	17 When you cannot go to the hospital to visit, you can call the responsible nurse or doctor to ask about the child’s condition	3.59 ± 0.62
	22 Know every treatment the child is currently receiving	3.78 ± 0.45
	25 Medical staff do not avoid the condition of the disease, and can talk to me about the possibility that the child's treatment effect is not significant	3.75 ± 0.46
	27 Be informed when planning to change the treatment plan	3.76 ± 0.49
	34 Know the purpose of a certain treatment for the patient	3.75 ± 0.48
	35 I hope to receive dietary guidance and activity guidance for children with various diseases	3.72 ± 0.49
The need to be close to the child	18 When parents have special circumstances, they hope to adjust the visiting time flexibly	3.57 ± 0.60
	32 Hope to be able to accommodate and increase visitation opportunities in special circumstances	3.65 ± 0.58
	33 Get information about the patient's condition every day	3.76 ± 0.47
	37 I hope the doctor can make an appointment to explain the child's condition	3.60 ± 0.62
Condition assurance	2 Hope that the medical staff can explain the condition easily and understandably	3.69 ± 0.52
	5 The medical staff can answer my questions truthfully	3.75 ± 0.45
	10 Feel the care of medical staff for patients	3.69 ± 0.49
	11 Let me understand the prognosis of the child	3.81 ± 0.40
	20 Hope that medical staff will do their best and be responsible	3.82 ± 0.42
	21 Can feel the condition is expected to improve	3.80 ± 0.41
	31 Can know the specific circumstances of the change	3.75 ± 0.47

ICU: Intensive care unit.

Table 3 M-CCFNI scores of various dimensions and total score of parents of children with complicated congenital heart disease

Demand dimension	Score (mean ± SD)	Ranking
Condition assurance	3.76 ± 0.46	1
Get information	3.66 ± 0.56	2
The need to be close to the child	3.65 ± 0.57	3
Support from medical staff	3.58 ± 0.65	4
Parents' own comfort	3.31 ± 0.86	5
Total score	3.62 ± 0.62

Table 4 Scores of top 5 needs of parents of children with complicated congenital heart

Dimension	Entry	Score (mean ± SD)	"Very important" proportion/%	Sort
AS	Hope that medical staff will do their best and be responsible	3.82 ± 0.42	83.3	1
SS	When the condition changes, someone can call the parents in time	3.82 ± 0.39	81.9	2
AS	Allow me to understand the prognosis of the child	3.81 ± 0.40	81.9	3
AS	Can feel the condition is expected to get better	3.80 ± 0.41	80.9	4
IS	Know every treatment the child is currently receiving	3.78 ± 0.45	76.5	5

AS: Assurance scale; SS: Support scale; IS: Information scale.

Table 5 Single factor analysis of demand scores of parents of children with congenital heart disease

Influencing factors	Dimension 1: Medical staff support			Dimension 2: Parents' own comfort			Dimension 3: Getting information			Dimension4: Close to the needs of children			Dimension5: Condition assurance
	Demand score	F value	P value	Demand score	F value	P value	Demand score	F value	P value	Demand score	F value	P value	Demand score	F value	P value
Age (yr)		1.635	0.202		9.320	0.003b		4.609	0.033a		6.892	0.009b		4.021	0.046a
≤ 35	22.40 ± 2.22			7.43 ± 0.93			25.60 ± 3.78			11.03 ± 1.56			11.52 ± 1.03
> 35	21.94 ± 2.21			6.96 ± 0.99			25.87 ± 2.54			10.37 ± 1.58			11.17 ± 1.20
Sex		0.637	0.426		1.304	0.255		1.341	0.248		0.433	0.511		0.733	0.393
Male	22.10 ± 2.08			7.19 ± 1.01			26.19 ± 2.68			10.75 ± 1.49			11.33 ± 1.14
Female	22.37 ± 2.28			7.36 ± 0.94			26.62 ± 2.32			10.91 ± 1.63			11.47 ± 1.06
Parents		1.307	0.254		1.694	0.195		1.491	0.224		0.896	0.345		0.733	0.393
Father	22.02 ± 2.06			7.17 ± 1.01			26.17 ± 2.67			10.70 ± 1.50			11.33 ± 1.14
Mother	22.40 ± 2.28			7.37 ± 0.94			26.63 ± 2.33			10.93 ± 1.63			11.47 ± 1.06
Education		2.532	0.113		2.359	0.126		7.319	0.007b		7.422	0.007b		7.259	0.008b
Below college	22.04 ± 2.46			7.20 ± 1.03			26.04 ± 2.78			10.56 ± 1.68			11.23 ± 1.21
College degree and above	22.54 ± 1.91			7.41 ± 0.88			26.96 ± 1.93			11.16 ± 1.42			11.64 ± 0.89
Monthly income		1.704	0.193		1.443	0.231		3.075	0.081		1.043	0.308		0.518	0.473
≤ 6000 yuan	22.10 ± 2.39			7.23 ± 1.03			26.23 ± 2.62			10.76 ± 1.59			11.38 ± 1.12
> 6000 yuan	22.52 ± 1.95			7.40 ± 0.86			26.84 ± 2.14			11.00 ± 1.58			11.49 ± 1.03
Place of residence		5.213	0.023a		1.515	0.220		4.777	0.030a		0.562	0.454		2.027	0.156
Rural area	22.02 ± 2.29			7.24 ± 1.01			26.21 ± 2.59			10.79 ± 1.63			11.35 ± 1.14
City	22.77 ± 2.01			7.42 ± 0.86			27.00 ± 2.04			10.97 ± 1.51			11.58 ± 0.95
Only child		0.075	0.785		2.557	0.111		0.181	0.671		0.667	0.415		0.093	0.760
No	22.32 ± 2.10			7.21 ± 1.01			26.55 ± 2.28			10.78 ± 1.61			11.41 ± 1.08
Yes	22.23 ± 2.39			7.43 ± 0.89			26.40 ± 2.66			10.96 ± 1.55			11.46 ± 1.10
Religious belief		0.711	0.400		0.054	0.816		0.000	0.989		0.554	0.457		0.051	0.821
No	22.33 ± 2.23			7.31 ± 0.97			26.49 ± 2.45			10.82 ± 1.60			11.42 ± 1.10
Yes	21.91 ± 2.11			7.26 ± 0.96			26.48 ± 2.47			11.09 ± 1.47			11.48 ± 0.99

^aP < 0.05.

^bP < 0.01.