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Erschienen in: BMC Pediatrics 1/2018

Open Access 01.12.2018 | Research article

Health-related quality of life of the parents of children hospitalized due to acute rotavirus infection: a cross-sectional study in Latvia

verfasst von: Gunta Laizane, Anda Kivite, Inese Stars, Marita Cikovska, Ilze Grope, Dace Gardovska

Erschienen in: BMC Pediatrics | Ausgabe 1/2018

Abstract

Background

Rotavirus is the leading cause of severe diarrhea in young children and infants worldwide, representing a heavy public health burden. Limited information is available regarding the impact of rotavirus gastroenteritis on the quality of life of affected children and their families.
The objectives of study were to estimate the impact of rotavirus infection on health-related quality of life (HRQL), to assess the social and emotional effects on the families of affected children.

Methods

This study enrolled all (n = 527) RotaStrip®-positive (with further PCR detection) cases (0–18 years of age) hospitalized from April 2013 to December 2015 and their caregivers. A questionnaire comprising clinical (filled-in by the medical staff) and social (filled by the caregivers) sections was completed per child.

Results

Main indicators of emotional burden reported by caregivers were compassion (reported as severe/very severe by 91.1% of parents), worry (85.2%), stress/anxiety (68.0%). Regarding social burden, 79.3% of caregivers reported the need to introduce changes into their daily routine due to rotavirus infection of their child. Regarding economic burden, 55.1% of parents needed to take days off work because of their child’s sickness, and 76.1% of parents reported additional expenditures in the family’s budget.
Objective measures of their child’s health status were not associated with HRQL of the family, as were the parent’s subjective evaluation of their child’s health and some sociodemographic factors. Parents were significantly more worried if their child was tearful (p = 0.006) or irritable (p < 0.001). Parents were more stressful/anxious if their child had a fever (p = 0.003), was tearful (p < 0.001), or was irritable (p < 0.001). Changes in parents’ daily routines were more often reported if the child had a fever (p = 0.02) or insufficient fluid intake (p = 0.04).

Conclusion

Objective health status of the child did not influence the emotional, social or economic burden, whereas the parents’ subjective perception of the child’s health status and sociodemographic characteristics, were influential.
A better understanding of how acute episodes affect the child and family, will help to ease parental fears and advise parents on the characteristics of rotavirus infection and the optimal care of an infected child.
Abkürzungen
CI
Confidence interval
HRQL
Health-related quality of life
n
Absolute number
OR
Odds ratio
PCR
Polymerase chain reaction

Background

Rotavirus is known to be the leading cause of severe gastroenteritis among infants and young children worldwide [1]. Rotavirus gastroenteritis is frequently associated with severe disease symptoms (vomiting, diarrhea, dehydration, etc.) and increased hospitalization episodes compared to other types of acute gastroenteritis caused by infectious agents [2].
Rotavirus gastroenteritis represents a heavy public health burden [3]. From 2010 to 2015, an average of 3000 registered rotavirus cases per year are reported in the age group of 0–6 years, being responsible for an average of approximately 1000 hospitalizations per year in Latvia [4].
The epidemiology of rotavirus gastroenteritis is well documented [5], but these data are not the only indicators of disease burden. Limited information is available regarding the impact of rotavirus gastroenteritis on the quality of life of affected children and their families [5].
Health-related quality of life (HRQL) refers to the subjective and objective impact of dysfunction associated with an illness or injury, medical treatment, and health care policy [6] and integrates physical, emotional and social well-being and functioning as perceived by the individual [7]. In pediatric research, HRQL measure has received an increasing attention and is recognized as a substantial health outcome [8]. Pediatric HRQL research is necessary to examine broader psychosocial outcomes and provide an in-depth understanding of the effects of disease and treatment on children’s health status [9]. Nerveless, this measure is primarily used in children with various chronic diseases [8].
In the case of pediatric disease, assessment of HRQL of the family is becoming increasingly important because a child’s illness affects the whole family as a holistic system. Studies in this area provide information on family needs, responses to the child’s disease, coping strategies and changes in family functioning. Most studies are related to childhood chronic diseases, such as congenital heart disease [7], bleeding disorders [10], atopic dermatitis [11], attention deficit/hyperactivity disorder [12], chronic kidney disease [13], and juvenile idiopathic arthritis [14], etc., in association with the quality of family life because of the long-term progression of such diseases and their impact on quality of life.
Less information is available regarding associations between temporary health conditions, such as acute rotavirus gastroenteritis, and HRQL. However, as childhood rotavirus gastroenteritis is a public health problem, it should be evaluated beyond clinical trials with respect to the psychological, social and economic consequences of the disease.
Studies that evaluated the effect of acute childhood rotavirus gastroenteritis on the family have revealed negative effects on family function and parental psycho-emotional wellbeing [5, 1517]. Parents indicated economic impact, such as lost work days lost due to the child’s disease [5] and additional direct costs [17], disruption of schedules and restrictions on daily activities [1517], high distress and worries due to symptoms [5, 1517], exhaustion and helplessness [16], need for additional childcare and the use of more nappies [5].
The aim of this study was to estimate the impact of rotavirus infection on HRQL and to assess the social and emotional impacts on the families of affected children. In addition, the factors associated with HRQL characteristics will be clarified.
This article reports the family impact of rotavirus gastroenteritis requiring hospitalization of a child based on individual interviews with parents or legal caregivers and objective data from patient files.

Methods

Study design

To investigate the quality of life of families where child is suffering from acute rotavirus infection, a quantitative cross-sectional study was carried out among caregivers of children who had been hospitalized in the Children’s Clinical University Hospital in Riga from April 2013 to December 2015.

Inclusion and exclusion criteria

The study enrolled all hospital cases of rotavirus-positive children (0–18 years of age) and their caregivers (parents or legal family representatives). Caregivers had to be willing to participate and provide written consent. As exclusion criteria included the absence of caregivers or caregivers not providing signed consent.

Data collection

Parents, of the laboratory confirmed rotavirus positive children, were invited to participate in individual interviews. The interviewer collected data regarding the clinical status of the child from patient files, and interviewed parents about emotional, social and economic factors pertaining to their child affecting their daily lives. All results and answers were collated in a questionnaire.

Instruments used

A questionnaire was developed to estimate the impact of rotavirus infection on parents of affected children.
The questionnaire consisted of two general parts: clinical (filled-in by the medical staff) and social (filled by the caregivers) parts. The clinical part posed questions regarding the demographic data of the patient and family, and objective and subjective signs and symptoms to determine the clinical severity of the case. To categorize clinical severity, the Vesikari score [18] was used. The social part of the questionnaire was developed based on concepts and research methods used in previous similar studies [5, 1517] and covered the following domains of the impact of pediatric rotavirus on the family: 1) parental emotional wellbeing and feelings (distress; helplessness; mental exhaustion; worry; anxiety for the child; fear of being infected; feelings of guilt); 2) social burden of disease (or the disease impact on parents’ daily activities (work schedule, training plans (syllabus), leisure time activities, domestic works (household)); 3) economic burden of the disease (working days lost due to child disease, additional financial expenditures); 4) parental opinion about the child’s physical symptoms (diarrhea, vomiting, fever, abdominal pain, dehydration, loss of appetite) and changes in behavior (apathy, sleeping disorders, irritability, anxiety); 5) parental opinion about rotavirus vaccine use (awareness of vaccine existence (yes/no); use of vaccine (yes/no; if answered “no”, the parents were asked about their motives for refusal).
Five-hundred twenty-seven hospitalized RotaStrip®-positive subjects further confirmed by PCR were enrolled in the study from April 2013 to December 2015. Totally 3301 hospitalized cases were registered from 2013 to 2015. As all enrolled patients were rotavirus-positive, the study did not have a rotavirus negative control group, but that can be considered in future research.

Statistical analysis

Descriptive statistics such as means for continuous variables and proportions for categorical variables were calculated. To evaluate the statistical significance of the differences of proportions of severe/very severe cases between subgroups, a Chi-square test or Fisher’s exact test were used. Statistical significance was set at p = 0.05.
Data processing was performed using IBM SPSS Statistics (Statistical Package for the Social Science, Version 22.0).

Results

Demographic characteristics of study subjects and their parents

The characteristics of the subjects and their parents are summarized in Table 1 (uploaded as separate file). The children’s mean age was 26.1 months, and the sex ratio was balanced between male and female subjects. The majority of responding parents where in the 25–34 year-old age group. Collected data on education levels revealed that majority of mothers had a higher education; among fathers - persons with secondary/vocational education and a higher education were equally represented. Most respondents had a stable social status, and were living in urban areas. Low income citizens are defined by Cabinet of Ministers of Latvia by regulation No.299. It determines that citizens with total monthly income less than 128.06 EUR per family member, can obtain status of low income person, and may apply for social support. Others have stable social status [19].
Table 1
Demographic and clinical characteristics of the study subjects and their parents (n = 527a)
Parameter
Number
Percent
Age of the child (months)
 Mean (range)
26.1 (1–209)
   ≤ 12
156
29.7
  13–24
168
31.9
  25–36
89
16.9
   ≥ 37
113
21.5
Gender of the child
 Female
258
49.0
 Male
269
51.0
Age of the mother (years)
  ≤ 24
55
10.5
 25–34
335
63.8
 35–44
127
24.2
  ≥ 45
8
1.5
Age of the father (years)
  ≤ 24
27
5.3
 25–34
281
55.1
 35–44
164
32.2
  ≥ 45
38
7.5
Education of mother
 Primary
29
5.6
 Secondary/vocational
189
36.2
 Higher
304
58.2
Education of father
 Primary
36
7.2
 Secondary/vocational
245
48.7
 Higher
222
44.1
Place of residence
 Urban
449
87.2
 Rural
66
12.8
Social status
 Low-income
28
5.4
 Socially stable
491
94.6
aThe sum of the stratified numbers can differ according to the parameters due to missing values

Objective and subjective appraisal of child’s health status

Clinical symptoms were categorized as severe according to the Vesikari score [18] in 93% patients (n = 463) and moderate in 7% (n = 35); no mild cases were detected. The objective and subjective appraisals of the health status of the included children are summarized in Table 2 (uploaded as separate file). Three symptoms most often notified by parents as very severe were diarrhea (mentioned by 53.6% (n = 280) of parents), insufficient fluid intake (49.6%, n = 259) and loss of appetite (41.5%, n = 215).
Table 2
Objective and subjective appraisal of the child’s health status (n = 527a)
Parameter
Number
Percent
Maximal number of vomiting episodes per day
 Mean (range)
2.1 (0–3)
Number of diarrhea episodes per 24 h
 Mean (range)
2.5 (1–3)
Severity (assessed by Vesikari score)
 Mild
0
0
 Moderate
35
7.0
 Severe
463
93.0
Severity of symptoms (assessed by parent)
 Diarrhea
  Not at all
16
3.1
  Mild
17
3.3
  Moderate
77
14.8
  Severe
132
25.3
  Very severe
280
53.6
 Vomiting
  Not at all
82
15.7
  Mild
61
11.7
  Moderate
87
16.7
  Severe
111
21.3
  Very severe
181
34.7
 Fever
  Not at all
78
15.0
  Mild
65
12.5
  Moderate
110
21.2
  Severe
109
21.0
  Very severe
158
30.4
 Abdominal pain
  Not at all
92
18.1
  Mild
71
14.0
  Moderate
135
26.6
  Severe
108
21.3
  Very severe
102
20.1
 Insufficient fluid intake
  Not at all
40
7.7
  Mild
34
6.5
  Moderate
84
16.1
  Severe
105
20.1
  Very severe
259
49.6
 Loss of appetite
  Not at all
45
8.7
  Mild
44
8.5
  Moderate
106
20.1
  Severe
108
20.5
  Very severe
215
41.5
 Apathy
  Not at all
43
8.4
  Mild
42
8.2
  Moderate
106
20.6
  Severe
139
27.0
  Very severe
184
35.8
 Inflamed bottom
  Not at all
203
39.2
  Mild
81
15.6
  Moderate
87
16.8
  Severe
67
12.9
  Very severe
80
15.4
 Interrupted sleep mode
  Not at all
167
32.2
  Mild
94
18.1
  Moderate
121
23.3
  Severe
82
15.8
  Very severe
55
10.6
 Tearfulness
  Not at all
78
15.0
  Mild
75
14.4
  Moderate
153
29.4
  Severe
131
25.2
  Very severe
83
16.0
 Anxiety, irritability
  Not at all
124
23.9
  Mild
95
18.3
  Moderate
121
23.4
  Severe
104
20.1
  Very severe
74
14.3
aThe sum of the stratified numbers can differ according to the parameters due to missing values

Assessment of emotional, social and economic impact of the disease on the family quality of life

Emotional, social, and economic impact of the disease is summarized in Table 3 (uploaded as separate file). Speaking about emotional burden of rotavirus infection - a very high level of compassion was found, mentioned as very severe in 76.4% (n = 402) of questionnaires, followed by a very high level of worry in 59.6% (n = 311) of cases and stress/anxiety (37.8% (n = 199) of cases). Social burden was analyzed by changes in daily routines, and the analyzed data showed that 79.0% (n = 413) of families had changes in their daily routine. Economic impact was analyzed by describing parental work day loss directly related to episodes of their child’s illness. It revealed that only 33.1% (n = 173) of parents did not need to take any days off work. Additionally - 75.2% (n = 380) of respondents had extra expenditures due to the disease (symptomatic drugs, diapers, etc.).
Table 3
Assessment of emotional, social and economic impact of the disease on the family quality of life (n = 527a)
Parameter
Number
Percent
Emotional burden
 Stress, anxiety
  Not at all
15
2.9
  Mild
46
8.7
  Moderate
112
21.3
  Severe
154
29.3
  Very severe
199
37.8
 Helplessness, despair
  Not at all
108
20.6
  Mild
77
14.7
  Moderate
130
24.8
  Severe
95
18.1
  Very severe
114
21.8
 Exhaustion
  Not at all
55
10.5
  Mild
62
11.8
  Moderate
149
28.4
  Severe
110
21.0
  Very severe
148
28.2
 Worry
  Not at all
10
1.9
  Mild
18
3.4
  Moderate
53
10.2
  Severe
130
24.9
  Very severe
311
59.6
 Compassion
  Not at all
8
1.5
  Mild
4
0.8
  Moderate
30
5.7
  Severe
82
15.6
  Very severe
402
76.4
 Fear to get infected
  Not at all
265
50.4
  Mild
91
17.3
  Moderate
75
14.3
  Severe
44
8.4
  Very severe
51
9.7
 Guilt
  Not at all
199
38.0
  Mild
82
15.6
  Moderate
94
17.9
  Severe
60
11.5
  Very severe
89
17.0
Social burden
 Changes in daily routine
  Yes
413
79.0
  No
110
21.0
Economic burden
 Days off work
  None
173
33.1
  1–2
117
22.4
  3–4
96
18.4
  5+
76
14.5
  Not employed
61
11.7
 Other expenditures
  Yes
380
75.2
  No
125
24.8
aThe sum of the stratified numbers can differ according to the parameters due to missing values

Factors associated with the impact of the disease on the family quality of life

To evaluate the emotional burden of the disease, the three most common indicators of emotional burden were chosen for the further analysis, i.e., compassion, worry and stress/anxiety. To better perceive and interpret the data for further analysis the categories “severe” and “very severe” were combined, and the categories “mild” and “not at all” were combined.
In Table 4 (uploaded as separate file) the independent factors (sociodemographic, subjective and objective health status indicators) associated with the emotional burden of the disease are summarized.
Table 4
Emotional burden (stress/anxiety, worry, compassion) of the disease stratified by the associated factors (n = 527a)
Factor
Not at all / mild
Moderate
Severe / very severe
p
Number
%
Number
%
Number
%
 
STRESS / ANXIETY
 
Sociodemographic factors
  Gender
   Female
33
12.8
46
17.9
178
69.3
0.16
   Male
28
10.4
66
24.5
175
65.1
  Age
    ≤ 12 months
15
9.6
37
23.7
104
66.7
0.24
   13–24 months
16
9.5
34
20.2
118
70.2
   25–36 months
9
10.2
21
23.9
58
65.9
   37+ months
21
18.6
20
17.7
72
63.7
  Age of the mother
    ≤ 24 years
5
9.1
12
21.8
38
69.1
0.78
   25–34 years
35
10.4
73
21.8
227
67.8
   35–44 years
20
15.9
24
19.0
82
65.1
   45+ years
1
12.5
2
25.0
5
62.5
  Age of the father
    ≤ 24 years
2
7.4
7
25.9
18
66.7
0.99
   25–34 years
35
12.5
59
21.0
187
65.5
   35–44 years
19
11.6
35
21.3
110
67.1
   45+ years
4
10.8
8
21.6
25
67.6
  Education of the mother
   Primary
4
13.8
5
17.2
20
69.0
0.95
   Secondary / vocational
23
12.2
38
20.1
128
67.7
   Higher
34
11.2
67
22.1
202
66.7
  Education of the father
   Primary
7
19.4
6
16.7
23
63.9
0.57
   Secondary / vocational
25
10.2
55
22.5
164
67.2
   Higher
28
12.6
47
21.2
147
66.2
  Family structure
   Both parents
58
11.8
106
21.6
327
66.6
0.20
   Single parent
1
3.6
4
14.3
23
82.1
  Place of residence
   Urban
55
12.3
96
21.4
297
66.3
0.74
   Rural
6
9.1
14
21.2
46
69.7
Objective evaluation of the health status
  Vomiting (times per 24 h)
   0
1
33.3
0
0
2
66.7
0.36
   1
12
12.4
18
18.6
67
69.1
   2
28
12.4
58
25.7
140
61.9
   3
18
10.8
30
18.0
119
71.3
  Diarrhea (times per 24 h)
   1
9
14.3
12
19.0
42
66.7
0.95
   2
13
10.6
27
22.0
83
67.5
   3
37
11.9
68
21.8
207
66.3
  Severity of episode (Vesikari)
   Moderate
4
11.4
6
17.1
25
71.4
0.79
   Severe / very severe
55
11.9
101
21.9
306
66.2
Subjective evaluation of the health status
  Severity of diarrhea
   Not at all / mild
5
15.2
5
15.2
23
69.7
0.41
   Moderate
13
17.1
17
22.4
46
60.5
   Severe / very severe
43
10.4
89
21.6
280
68.0
  Severity of vomiting
   Not at all / mild
15
10.5
35
24.5
93
65.0
0.33
   Moderate
6
6.9
21
24.1
60
69.0
   Severe / very severe
40
13.7
56
19.2
195
67.0
  Severity of fever
   Not at all / mild
22
15.4
44
30.8
77
53.8
0.003
   Moderate
10
9.2
22
20.2
77
70.6
   Severe / very severe
29
10.9
45
16.9
193
72.3
  Severity of abdominal pain
   Not at all / mild
24
14.7
34
20.9
105
64.4
0.61
   Moderate
14
10.4
32
23.9
88
65.7
   Severe / very severe
21
10.0
44
21.0
145
69.0
  Severity of insufficient fluid intake
   Not at all / mild
8
10.8
16
21.6
50
67.6
0.74
   Moderate
11
13.1
22
26.2
51
60.7
   Severe / very severe
42
11.6
73
20.1
248
68.3
  Severity of loss of appetite
   Not at all / mild
13
14.6
19
21.3
57
64.0
0.07
   Moderate
9
8.5
33
31.1
64
60.4
   Severe / very severe
39
12.1
59
18.3
224
69.6
  Severity of apathy
   Not at all / mild
7
8.2
20
23.5
58
68.2
0.37
   Moderate
17
16.0
25
23.6
64
60.4
   Severe / very severe
36
11.2
64
19.9
222
68.9
  Severity of inflamed bottom
   Not at all / mild
38
13.4
66
23.2
180
63.4
0.35
   Moderate
10
11.6
14
16.3
62
72.1
   Severe / very severe
13
8.8
30
20.4
104
70.7
  Severity of interrupted sleep mode
   Not at all / mild
36
13.8
54
20.8
170
65.4
0.19
   Moderate
14
11.6
32
26.4
75
62.0
   Severe / very severe
11
8.0
25
18.2
101
73.7
  Severity of tearfulness
   Not at all / mild
35
22.9
30
19.6
88
57.5
< 0.001
   Moderate
12
7.9
43
28.3
97
63.8
   Severe / very severe
14
6.5
39
18.2
161
75.2
  Severity of anxiety / irritability
   Not at all / mild
44
20.2
47
21.6
127
58.3
< 0.001
   Moderate
9
7.4
36
29.8
76
62.8
   Severe / very severe
8
4.5
27
15.2
143
80.3
WORRY
 
Sociodemographic factors
  Gender
   Female
12
4.7
20
7.8
224
87.5
0.16
   Male
16
6.0
33
12.4
217
81.6
  Age
    ≤ 12 months
6
3.9
16
10.4
132
85.7
0.12
   13–24 months
6
3.6
15
8.9
147
87.5
   25–36 months
5
5.7
6
6.9
76
87.4
   37+ months
11
9.8
16
14.3
85
75.9
  Age of mother
    ≤ 24 years
4
7.3
1
1.8
50
90.9
0.21
   25–34 years
15
4.5
35
10.5
283
85.0
   35–44 years
9
7.3
14
11.3
101
81.5
   45+ years
0
0
2
25.0
6
75.0
  Age of father
    ≤ 24 years
1
3.7
1
3.7
25
92.6
0.81
   25–34 years
15
5.4
27
9.6
238
85.0
   35–44 years
9
5.6
18
11.1
135
83.3
   45+ years
1
2.8
5
13.9
30
83.3
  Education of mother
   Primary
0
0
2
6.9
27
93.1
0.58
   Secondary / vocational
11
5.9
16
8.6
159
85.5
   Higher
17
5.6
33
10.9
252
83.4
  Education of father
   Primary
3
8.3
0
0
33
91.7
0.30
   Secondary / vocational
12
5.0
26
10.8
203
84.2
   Higher
11
5.0
24
10.9
186
84.2
  Family structure
   Both parents
26
5.3
49
10.0
413
84.6
0.92
   Single parent
1
3.6
3
10.7
24
85.7
  Place of residence
   Urban
25
5.6
48
10.8
372
83.6
0.27
   Rural
3
4.6
3
4.6
59
90.8
Objective evaluation of the health status
  Vomiting (times per 24 h)
   0
1
33.3
0
0
2
66.7
0.21
   1
6
6.3
6
6.3
84
87.5
   2
11
4.9
26
11.6
187
83.5
   3
6
3.6
19
11.4
141
84.9
  Diarrhea (times per 24 h)
   1
6
9.5
3
4.8
54
85.7
0.13
   2
5
4.1
10
8.1
108
87.8
   3
13
4.2
38
12.3
257
83.4
  Severity of episode (Vesikari)
   Moderate
2
5.7
2
5.7
31
88.6
0.64
   Severe / very severe
22
4.8
49
10.7
387
84.5
Subjective evaluation of the health status
  Severity of diarrhea
   Not at all / mild
2
6.1
5
15.2
26
78.8
0.07
   Moderate
9
11.8
6
7.9
61
80.3
   Severe / very severe
17
4.2
41
10.0
350
85.8
  Severity of vomiting
   Not at all / mild
7
4.9
13
9.2
122
85.9
0.09
   Moderate
1
1.1
14
16.1
72
82.8
   Severe / very severe
20
6.9
25
8.7
243
84.4
  Severity of fever
   Not at all / mild
11
7.8
13
9.2
117
83.0
0.14
   Moderate
5
4.6
17
15.7
86
79.6
   Severe / very severe
12
4.5
22
8.3
232
87.2
  Severity of abdominal pain
   Not at all / mild
13
8.0
18
11.0
132
81.0
0.34
   Moderate
8
6.1
14
10.7
109
83.2
   Severe / very severe
7
3.3
19
9.1
183
87.6
  Severity of insufficient fluid intake
   Not at all / mild
5
6.8
6
8.1
63
85.1
0.89
   Moderate
3
3.6
9
10.7
72
85.7
   Severe / very severe
20
5.6
37
10.3
302
84.1
  Severity of loss of appetite
   Not at all / mild
5
5.6
9
10.1
75
84.3
0.57
   Moderate
3
2.9
14
13.5
87
83.7
   Severe / very severe
19
5.9
29
9.0
273
85.0
  Severity of apathy
   Not at all / mild
1
1.2
12
14.3
71
84.5
0.24
   Moderate
7
6.6
12
11.3
87
82.1
   Severe / very severe
19
5.9
28
8.8
273
85.3
  Severity of inflamed bottom
   Not at all / mild
20
7.1
34
12.0
229
80.9
0.13
   Moderate
4
4.7
5
5.8
77
89.5
   Severe / very severe
4
2.8
13
9.0
128
88.3
  Severity of interrupted sleep mode
   Not at all / mild
19
7.4
26
10.1
213
82.6
0.33
   Moderate
5
4.2
14
11.7
101
84.2
   Severe / very severe
4
2.9
12
8.8
121
88.3
  Severity of tearfulness
   Not at all / mild
16
10.5
19
12.5
117
77.0
0.006
   Moderate
6
4.0
16
10.6
129
85.4
   Severe / very severe
6
2.8
16
7.5
191
89.7
  Severity of anxiety / irritability
   Not at all / mild
21
9.7
26
12.0
170
78.3
< 0.001
   Moderate
2
1.7
19
15.8
99
82.5
   Severe / very severe
5
2.8
7
4.0
165
93.2
COMPASSION
 
Sociodemographic factors
  Gender
   Female
3
1.2
15
5.8
239
93.0
0.25
   Male
9
3.3
15
5.6
245
91.1
  Age
    ≤ 12 months
3
1.9
4
2.6
149
95.5
0.21
   13–24 months
6
3.6
9
5.4
153
91.1
   25–36 months
1
1.1
6
6.8
81
92.0
   37+ months
2
1.8
11
9.7
100
88.5
  Age of mother
    ≤ 24 years
1
1.8
1
1.8
53
96.4
0.68
   25–34 years
8
2.4
17
5.1
310
92.5
   35–44 years
3
2.4
10
7.9
113
89.7
   45+ years
0
0
1
12.5
7
87.5
  Age of father
    ≤ 24 years
0
0
1
3.7
26
96.3
0.43
   25–34 years
7
2.5
11
3.9
263
93.6
   35–44 years
5
3.0
11
6.7
148
90.2
   45+ years
0
0
4
10.8
33
89.2
  Education of mother
   Primary
0
0
1
3.4
28
96.6
0.36
   Secondary / vocational
7
3.7
8
4.2
174
92.1
   Higher
5
1.7
20
6.6
278
91.7
  Education of father
   Primary
4
11.1
2
5.6
30
83.3
0.01
   Secondary / vocational
4
1.6
13
5.3
227
93.0
   Higher
4
1.8
11
5.0
207
93.2
  Family structure
   Both parents
12
2.4
27
5.5
452
92.1
0.67
   Single parent
0
0
2
7.1
26
92.9
  Place of residence
   Urban
11
2.5
27
6.0
410
91.5
0.79
   Rural
1
1.5
3
4.5
62
93.9
Objective evaluation of the health status
  Vomiting (times per 24 h)
   0
0
0
0
0
3
100.0
0.22
   1
4
4.1
10
10.3
83
85.6
   2
4
1.8
9
4.0
213
94.2
   3
2
1.2
10
6.0
155
92.8
  Diarrhea (times per 24 h)
   1
1
1.6
6
9.5
56
88.9
0.54
   2
4
3.3
6
4.9
113
91.9
   3
5
1.6
17
5.4
290
92.9
  Severity of episode (Vesikari)
   Moderate
0
0
4
11.4
31
88.6
0.24
   Severe / very severe
10
2.2
25
5.4
427
92.4
Subjective evaluation of the health status
  Severity of diarrhea
   Not at all / mild
0
0
2
6.1
31
93.9
0.48
   Moderate
3
3.9
2
2.6
71
93.4
   Severe / very severe
8
1.9
26
6.3
378
91.7
  Severity of vomiting
   Not at all / mild
2
1.4
12
8.4
129
90.2
0.32
   Moderate
3
3.4
2
2.3
82
94.3
   Severe / very severe
6
2.1
16
5.5
269
92.4
  Severity of fever
   Not at all / mild
3
2.1
11
7.7
129
90.2
0.84
   Moderate
2
1.8
6
5.5
101
92.7
   Severe / very severe
6
2.2
13
4.9
248
92.9
  Severity of abdominal pain
   Not at all / mild
6
3.7
12
7.4
145
89.0
0.31
   Moderate
1
0.7
6
4.5
127
94.8
   Severe / very severe
4
1.9
10
4.8
196
93.3
  Severity of insufficient fluid intake
   Not at all / mild
0
0
5
6.8
69
93.2
0.41
   Moderate
2
2.4
2
2.4
80
95.2
   Severe / very severe
9
2.5
23
6.3
331
91.2
  Severity of loss of appetite
   Not at all / mild
2
2.2
4
4.5
83
93.3
0.98
   Moderate
2
1.9
6
5.7
98
92.5
   Severe / very severe
7
2.2
20
6.2
295
91.6
  Severity of apathy
   Not at all / mild
3
3.5
7
8.2
75
88.2
0.60
   Moderate
3
2.8
5
4.7
98
92.5
   Severe / very severe
5
1.6
18
5.6
299
92.9
  Severity of inflamed bottom
   Not at all / mild
6
2.1
22
7.7
256
90.1
0.12
   Moderate
3
3.5
4
4.7
79
91.9
   Severe / very severe
2
1.4
3
2.0
142
96.6
  Severity of interrupted sleep mode
   Not at all / mild
4
1.5
16
6.2
240
92.3
0.73
   Moderate
4
3.3
5
4.1
112
92.6
   Severe / very severe
3
2.2
9
6.6
125
91.2
  Severity of tearfulness
   Not at all / mild
3
2.0
12
7.8
138
90.2
0.46
   Moderate
5
3.3
7
4.6
140
92.1
   Severe / very severe
3
1.4
10
4.7
201
93.9
  Severity of anxiety / irritability
   Not at all / mild
4
1.8
15
6.9
199
91.3
0.53
   Moderate
3
2.5
9
7.4
109
90.1
   Severe / very severe
4
2.2
6
3.4
168
94.4
None of the sociodemographic factors showed a significant association with the indicators of emotional burden of rotavirus infection. The only factor showing a significant association with compassion was education of the father, i.e., fathers with higher education corresponded to a higher proportion reporting high or very high levels of compassion (p = 0.01).
None of the indicators of emotional burden showed a statistically significant association with the objective health status variables as well as with most of the subjective indicators of the child’s health status. A significant correlation was found only between stress/anxiety and fever (more severe fever corresponded to a higher level of severe stress/anxiety (p = 0.003)), between stress/anxiety and irritability of the child, between worry and irritability of the child (more intense irritability corresponded to a higher proportion of caregivers reporting severe or very severe stress (p < 0.001) or feelings of worry (p < 0.001)), and between stress or worry and tearfulness of the child (more severe tearfulness corresponded to a higher proportion of parents reporting severe or very severe stress (p < 0.001) or worry (p = 0.006)).
Table 5 (find uploaded as separate file) shows the social burden of the acute rotavirus infection and its associations with different independent variables. No statistically significant associations were found between the necessity to introduce changes in the caregiver’s daily routine and the objective health status indicators. The social burden showed statistically significant associations with different sociodemographic factors - older age of the child (p < 0.001), older age of the mother (p < 0.001) or the father (p = 0.03) and higher education level of the mother (p < 0.001) corresponded to larger proportions of caregivers reporting a need to introduce changes in their daily routine because of the rotavirus infection (such as sporting, educational or culture events/activities).
Table 5
Social burden (changes in daily routine) of the disease stratified by the associated factors (n = 527)
Factor
Yes
No
p
Number
%
Number
%
Sociodemographic factors
 Gender
  Female
211
82.4
45
17.6
0.06
  Male
202
75.7
65
24.3
 Age
   ≤ 12 months
105
67.7
50
32.3
< 0.001
  13–24 months
126
75.4
41
24.6
  25–36 months
79
89.8
9
10.2
  37+ months
102
91.1
10
8.9
 Age of the mother (years)
   ≤ 24 years
31
56.4
24
43.6
< 0.001
  25–34 years
264
79.3
69
20.7
  35–44 years
111
88.8
14
11.2
  45+ years
5
62.5
3
37.5
 Age of the father (years)
   ≤ 24 years
18
66.7
9
33.3
0.03
  25–34 years
212
75.4
69
24.6
  35–44 years
137
85.1
24
14.9
  45+ years
32
86.5
5
13.5
 Education of the mother
  Primary
18
62.1
11
37.9
< 0.001
  Secondary / vocational
133
71.1
54
28.9
  Higher
257
85.1
45
14.9
 Education of the father
  Primary
24
70.6
10
29.4
0.30
  Secondary / vocational
190
78.2
53
21.8
  Higher
181
81.5
41
18.5
 Family structure
  Both parents
386
79.1
102
20.9
0.61
  Single parent
21
75.0
7
25.0
 Place of residence
  Urban
350
78.5
96
21.5
0.57
  Rural
53
81.5
12
18.5
Objective evaluation of the health status
 Vomiting (times per 24 h)
  0
1
33.3
2
66.7
0.08
  1
70
72.2
27
27.8
  2
178
79.1
47
20.9
  3
135
81.3
31
18.7
 Diarrhea (times per 24 h)
  1
48
77.4
14
22.6
0.07
  2
87
71.3
35
28.7
  3
254
81.4
58
18.6
 Severity of episodes (Vesikari)
  Moderate
24
68.6
11
31.4
0.13
  Severe / very severe
366
79.6
94
20.4
Subjective evaluation of the health status
 Severity of diarrhea
  Not at all / mild
24
72.7
9
27.3
0.36
  Moderate
56
74.7
19
25.3
  Severe / very severe
330
80.3
81
19.7
 Severity of vomiting
  Not at all / mild
110
77.5
32
22.5
0.23
  Moderate
63
73.3
23
26.7
  Severe / very severe
237
81.4
54
18.6
 Severity of fever
  Not at all / mild
102
71.8
40
28.2
0.02
  Moderate
94
85.5
16
14.5
  Severe / very severe
215
80.8
51
19.2
 Severity of abdominal pain
  Not at all / mild
123
75.9
39
24.1
0.63
  Moderate
105
78.9
28
21.1
  Severe / very severe
168
80.0
42
20.0
 Severity of insufficient fluid intake
  Not at all / mild
50
68.5
23
31.5
0.04
  Moderate
63
76.8
19
23.2
  Severe / very severe
296
81.5
67
18.5
 Severity of loss of appetite
  Not at all / mild
64
72.2
24
27.3
0.06
  Moderate
78
74.3
27
25.7
  Severe / very severe
264
82.2
57
17.8
 Severity of apathy
  Not at all / mild
60
71.4
24
28.6
0.14
  Moderate
85
81.0
20
19.0
  Severe / very severe
260
81.0
61
19.0
 Severity of inflamed bottom
  Not at all / mild
219
77.9
62
22.1
0.60
  Moderate
82
82.8
15
17.2
  Severe / very severe
117
80.1
29
19.9
 Severity of interrupted sleep mode
  Not at all / mild
199
77.1
59
22.9
0.48
  Moderate
96
79.3
25
20.7
  Severe / very severe
112
82.4
24
17.6
 Severity of tearfulness
  Not at all / mild
116
76.3
36
23.7
0.59
  Moderate
123
80.9
29
19.1
  Severe / very severe
169
79.7
43
20.3
 Severity of anxiety / irritability
  Not at all / mild
168
77.4
49
22.6
0.64
  Moderate
98
81.0
23
19.0
  Severe / very severe
142
80.7
34
19.3
Out of all subjective health status indicators, only fever (similarly to the emotional burden) and insufficient fluid intake were significantly associated with the social burden of the disease. That is, a larger proportion of caregivers reported needing to introduce changes in their daily routine when their child had more severe fevers (p = 0.02) or insufficient fluid intake (p = 0.04).
Finally, Table 6 (find uploaded as separate file) reveals the factors that increased the economic burden of rotavirus infection. None of the objective health status indicators significantly influenced the working abilities of the parents. Only two sociodemographic factors showed a significant impact on the economic burden of the disease: a higher age of the child (p = 0.01) and higher level of education of the mother (p = 0.02) corresponded to a larger proportion of respondents reporting the need to be absent from work for at least 1 day.
Table 6
Economic burden (days off work) of the disease stratified by the associated factors (n = 527a)
Factor
None
 
At least one
 
Not employed
 
p
Number
%
Number
%
Number
%
 
Sociodemographic factors
 Gender
  Female
81
31.6
148
57.8
27
10.5
0.49
  Male
92
34.5
141
52.8
34
12.7
 Age
   ≤ 12 months
67
43.8
61
39.9
25
16.3
0.01
  13–24 months
56
33.3
96
57.1
16
9.5
  25–36 months
22
24.7
57
64.0
10
11.2
  37+ months
28
25.0
74
66.1
10
8.9
 Age of the mother
   ≤ 24 years
17
31.5
28
51.9
9
16.7
0.84
  25–34 years
110
32.9
188
56.3
36
10.8
  35–44 years
41
32.8
69
55.2
15
12.0
  45+ years
4
50.0
3
37.5
1
12.5
 Age of the father
   ≤ 24 years
11
42.3
11
42.3
4
15.4
0.48
  25–34 years
95
33.9
152
54.3
33
11.8
  35–44 years
54
33.1
92
56.4
17
10.4
  45+ years
7
18.9
25
67.6
5
13.5
 Education of the mother
  Primary
14
48.3
12
41.4
3
10.3
0.02
  Secondary / vocational
73
39.0
85
45.5
29
15.5
  Higher
85
28.1
188
62.3
29
9.6
 Education of the father
  Primary
12
35.3
16
47.1
6
17.6
0.41
  Secondary / vocational
82
33.6
140
57.4
22
9.0
  Higher
71
32.1
120
54.3
30
13.6
 Family structure
  Both parents
159
32.6
271
55.5
58
11.9
0.64
  Single parent
11
39.3
15
53.6
2
7.1
 Place of residence
  Urban
145
32.6
245
55.1
55
12.4
0.53
  Rural
23
34.8
38
57.6
5
7.6
Objective evaluation of the health status
 Vomiting (times per 24 h)
  0
3
1000.
0
0
0
0
0.28
  1
32
33.3
50
52.1
14
14.6
  2
78
34.7
123
54.7
24
10.7
  3
52
31.1
95
56.9
20
12.0
 Diarrhea (times per 24 h)
  1
23
36.5
33
52.4
7
11.1
0.95
  2
40
32.5
66
53.7
17
13.8
  3
104
33.5
170
54.8
36
11.6
 Severity of episodes (Vesikari)
  Moderate
14
40.0
17
48.6
4
11.4
0.70
  Severe / very severe
152
33.0
252
54.8
56
12.2
Subjective evaluation of the health status
 Severity of diarrhea
  Not at all / mild
13
39.4
17
51.5
3
9.1
0.43
  Moderate
31
40.8
39
51.3
6
7.9
  Severe / very severe
128
31.2
232
56.6
50
12.2
 Severity of vomiting
  Not at all / mild
55
38.7
71
50.0
16
11.3
0.26
  Moderate
27
31.0
46
52.9
14
16.1
  Severe / very severe
90
30.9
171
58.8
30
10.3
 Severity of fever
  Not at all / mild
54
38.0
70
49.3
18
12.7
0.19
  Moderate
27
24.8
69
63.3
13
11.9
  Severe / very severe
90
33.7
150
56.2
27
10.1
 Severity of abdominal pain
  Not at all / mild
61
37.4
84
51.5
18
11.0
0.12
  Moderate
51
38.3
71
53.4
11
8.3
  Severe / very severe
57
27.1
124
59.0
29
13.8
 Severity of insufficient fluid intake
  Not at all / mild
32
43.8
28
38.4
13
17.8
0.02
  Moderate
30
35.7
43
51.2
11
13.1
  Severe / very severe
110
30.4
216
59.7
36
9.9
 Severity of loss of appetite
  Not at all / mild
39
44.3
39
44.3
10
11.4
0.06
  Moderate
39
36.8
54
50.9
13
12.3
  Severe / very severe
93
29.0
192
59.8
36
11.2
 Severity of apathy
  Not at all / mild
33
39.8
39
47.0
11
13.3
0.20
  Moderate
34
32.4
55
52.4
16
15.2
  Severe / very severe
99
30.7
192
59.4
32
9.9
 Severity of inflamed bottom
  Not at all / mild
81
28.7
174
61.7
27
9.6
0.03
  Moderate
37
42.5
38
43.7
12
13.8
  Severe / very severe
53
36.3
74
50.7
19
13.0
 Severity of interrupted sleep mode
  Not at all / mild
89
34.4
148
57.1
22
8.5
0.33
  Moderate
37
30.6
66
54.5
18
14.9
  Severe / very severe
45
33.1
72
52.9
19
14.0
 Severity of tearfulness
  Not at all / mild
53
34.9
80
52.6
19
12.5
0.92
  Moderate
47
30.7
88
57.5
18
11.8
  Severe / very severe
71
33.5
118
55.7
23
10.8
 Severity of anxiety / irritability
  Not at all / mild
69
31.7
121
55.5
28
12.8
0.27
  Moderate
34
28.1
76
62.8
11
9.1
  Severe / very severe
67
38.1
90
51.1
19
10.8
aThe sum of the stratified numbers can differ according to the parameters due to missing values
Out of all subjective health status indicators, only insufficient fluid intake (like the social burden) and inflamed bottom seems to increase the economic burden of the infection. A larger proportion of caregivers reported the need to be absent from work for cases of more severe insufficient fluid intake (p = 0.02) or inflamed bottom (p = 0.03) of their child.
Therefore, it can be concluded that the objective health status of the child does not influence the emotional, social or economic burden of the rotavirus infection, whereas the parents’ subjective perceptions of the child’s health status and some sociodemographic characteristics, such as the age of the child and the age or education of parents do influence the burden.

Discussion

This study reveals the impact of rotavirus gastroenteritis on HRQL of families whose children are affected. As the disease is characterized by a sudden onset, it can disrupt daily routine, require unexpected changes, and thus, can affect the physical, emotional and social wellbeing of the child and family. The results show that an acute illness negatively effects the family and increases their emotional, social and economic disease burden. Parents reported moderate or severe parental distress, worry and anxiety, as well as intense feelings of an exhaustion, helplessness and despair. This is consistent with the results of other studies that also reported parental emotions and feelings due to a child’s illness. Parents reported high distress levels during the episode of rotavirus gastroenteritis [5, 17, 18] and felt exhausted and helpless [18]. Our study concludes that parents of hospitalized children are faced with disruptions of their daily routine and social activities. This fact has also been established in similar studies [17]. The economic burden of disease is related to lost days of work and additional expenditures. In our study and other studies, parents experienced lost work days [5, 20] and additional expenditures. [17, 21].
Current research has shown that stress, anxiety, worry and compassion are the most often (and more intense) feelings experienced by parents due a child’s illness. Based on a subjective assessment of disease symptoms, parents reported that severe fever of the child, irritability and tearfulness promoted higher parental stress levels. Emotional reactions, to a certain extent, are socially formatted and structured [22]. Parental responses to a child’s symptoms and their subsequent emotional feelings can be incorporated and interpreted in a cultural framework. In Latvia, fever in children is possibly overestimated as an abnormal and potentially life-threatening condition. This, in turn, can lead to excessive parental stress reactions. Cultural and personal beliefs held by parents also influence perceptions of how a “healthy child” should look and behave [23]. Tearfulness and irritability are usually not associated with the image of a healthy child in Latvia, and these symptoms can provoke more intense levels of parental distress, worry and anxiety. Cultural factors regarding the impact of rotavirus gastroenteritis on families were analyzed in an ethnographic study in Taiwan and Vietnam [21]; another study also compared the emotional reactions of Spanish, Italian and Polish parents due to childhood acute rotavirus gastroenteritis. To help parents manage their child’s health needs during an acute illness and their own perceptions and reactions toward their child’s symptoms, sufficient parental health education is required [24]. A successful and mutual physician-parent communication, as the foundation of the therapeutic relationship, is an essential tool for better social support [25]; otherwise, lack of communication with a child’s parents can lead to misunderstandings and cause additional stress. The social burden of disease is an essential domain of HRQL. This study revealed that older mothers and fathers more often reported the need to unexpectedly change their daily routine because of their child’s acute illness, which was also true for mothers with higher education levels. This finding could be explained by the group of parents aged 35 or more as having more social duties and activities. Parents reported that severe fever and insufficient fluid intake were the most prevalent symptoms of their child that caused disruption of their daily schedule. This could be linked to cultural issues, parental education and health communication. In Latvia, information on child dehydration is broadly released, and the notion that children should drink fluids is strongly embodied in public discourses and practices.
Our study revealed that the main aspect of economic burden is the loss of work days. The larger proportion of parents (caregivers) experienced absence from work for at least 1 day due to a childhood rotavirus gastroenteritis when the child was of higher age. This finding could be explained by paid parental leave in Latvia, that covers first year of life. As children grow older, both parents usually are employed and sick-leave usually is required. Mothers with the higher educational levels more often reported the need to be absent from work at least 1 day. A possible explanation could be related to job specificity (duties, responsibility, etc.) and/or better social insurance and social security system. Parents reported that an inflamed bottom and insufficient fluid intake were the most prevalent symptoms of their child that led to lost work days, which could be linked to cultural and informational issues regarding symptom perception and management.
This study confirmed that acute childhood rotavirus gastroenteritis places a considerable burden on families. It affects all domains of HRQL. This study provides in-depth insight into parental subjective evaluation of their child’s symptoms and their reactions to these symptoms. These results are important for promoting better communication between physicians and parents.
Additional research may be necessary to identify more profound factors and to measure the associations among factors in considering the current development of conceptual frameworks for HRQL assessment in acute gastroenteritis [26].
This study has several limitations. First, the results are not fully generalizable, as only hospitalized children and their families were included. Thus, the results may not be relevant upon extrapolation to milder cases of rotavirus infection.

Conclusions

In this study, we found that the objective health status of the child did not influence the emotional, social or economic burden of rotavirus infection, but rather parents’ subjective perceptions of their child’s health status and sociodemographic characteristics such as the age of the child or the age or education of parents did affect their burden.
A better understanding of how acute episode affect the child and the child’s family could help to ease parental fears and advice parents on the characteristics of rotavirus infection and the optimal care of an affected child.

Acknowledgements

Authors would like to thank Riga Stradins University for granting the project “Clinical peculiarities of Rota viral infection, molecular epidemiology and health-associated life quality for hospitalized children and their family members”. This manuscript was drafted as part of a project.

Funding

Project was granted by Riga Stradins University (Grant No. RSU ZP 06/2013/2–3/155). Manuscript was drafted as part of a project.
The study was conducted in accordance with the Helsinki declaration and good clinical practice guidelines. The protocol and study consent were reviewed and approved by the ethical committee of Riga Stradins University and by the Institutional Review Board of Children’s Clinical University Hospital (No. 22/30.05.2013.)
All involved legal care givers signed consent of participation and written informed consent was obtained from the parents for analyzation and publication of collected data.
All involved legal care givers signed consent of participation and written informed consent was obtained from the parents for analyzation and publication of collected data.

Competing interests

Financial competing interests: Project was granted by Riga Stradins University (Grant No. RSU ZP 06/2013/2–3/155). Manuscript was drafted as part of a project.
Non-financial competing interests: This manuscript is part of the doctoral Thesis of the corresponding author Gunta Laizane.

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Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://​creativecommons.​org/​licenses/​by/​4.​0/​), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://​creativecommons.​org/​publicdomain/​zero/​1.​0/​) applies to the data made available in this article, unless otherwise stated.
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Metadaten
Titel
Health-related quality of life of the parents of children hospitalized due to acute rotavirus infection: a cross-sectional study in Latvia
verfasst von
Gunta Laizane
Anda Kivite
Inese Stars
Marita Cikovska
Ilze Grope
Dace Gardovska
Publikationsdatum
01.12.2018
Verlag
BioMed Central
Erschienen in
BMC Pediatrics / Ausgabe 1/2018
Elektronische ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-018-1086-y

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