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  • Research article
  • Open Access
  • Open Peer Review

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

BMC PediatricsBMC series – open, inclusive and trusted201818:114

https://doi.org/10.1186/s12887-018-1086-y

  • Received: 26 June 2017
  • Accepted: 7 March 2018
  • Published:
Open Peer Review reports

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.

Keywords

  • Rotavirus gastroenteritis
  • Health-related quality of life
  • Latvia
  • Childhood
  • Acute
  • Impact
  • Family

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.

Abbreviations

CI: 

Confidence interval

HRQL: 

Health-related quality of life

n: 

Absolute number

OR: 

Odds ratio

PCR: 

Polymerase chain reaction

Declarations

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.

Availability of data and materials

The datasets generated and analyzed during the current study are available in the Zenodo repository.

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Authors’ contributions

GL developed the clinical and social demographic parts of the questionnaire and was responsible for patient involvement, data collection, and preparation and submission of the manuscript. MC participated in patient involvement and data entry. AK participated in the development of the questionnaire, developed the platform for data entry, drafted the manuscript and performed the statistical analysis. IS participated in the development of the questionnaire and preparation of the manuscript. IG participated in the development of the clinical and social demographic parts of the questionnaire and preparation of the manuscript. DG was the project manager and supervisor. All authors read and approved the final manuscript.

Ethics approval and consent to participate

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.

Consent for publication

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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Authors’ Affiliations

(1)
Department of Paediatrics, Riga Stradins University, Vienibas gatve 45, Riga, LV-1004, Latvia
(2)
Department of Public Health and Epidemiology, Riga Stradins University, Kronvalda boulevard 9, Riga, LV-1010, Latvia

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Copyright

© The Author(s). 2018

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