Perceived Quality of Life and Health of Hospitalized Children ...

Child Ind Res (2008) 1:198–209 DOI 10.1007/s12187-007-9004-0

Perceived Quality of Life and Health of Hospitalized Children Francisca González-Gil & Cristina Jenaro & Maria Gómez-Vela & Noelia Flores

Accepted: 10 December 2007 / Published online: 25 December 2007 # Springer Science + Business Media B.V. 2007

Abstract Objective The purpose of the current study was to examine the impact of disease and hospitalization on children’s quality of life. Method Three measures were administered to 105 participants ranging in age from 6 to 15 years, from public hospitals in Castilla y Leon (Spain). Data were collected throughout 9 months. Measures were the Survey on Subjective Perception of Hospitalization and Hospital (CPSH), the quality of life survey KINDL, and the health survey SF-36. Internal consistency coefficients were acceptable for most of scales and subscales. Results indicated that children experience a decrease in their quality of life, mainly in daily living activities and psychological well being; that emotional states impact their quality of life, and that hospitals need to make some changes to better meet the needs of hospitalized children. Conclusions Interventions, at an organizational and individual level, may help improve the well-being of hospitalized children. Keywords Hospitalized children . Quality of life . Needs . Assessment . Health Several studies (Dougherty and Brown 1990; Fekkes et al. 2000; Palomo del Blanco 1995; Vernon et al. 1965) have assessed the consequences of disease and hospitalization on children, especially regarding their emotional well-being (Flórez and Valdés 1986). More common issues include anxiety or depression (Eiser 1990; Lizasoáin and Polaino-Lorente 1988; Polaino-Lorente and del Pozo 1991; Rodriguez and Boggs 1998) as well as low self-esteem (Kashani and Orvaschel 1990; Lizasoáin and Polaino-Lorente 1992, 1995; Ochoa and Polaino-Lorente 1999).

F. González-Gil (*) : C. Jenaro : M. Gómez-Vela : N. Flores Institute on Community Integration, INICO, Facultad de Psicología, Universidad de Salamanca, Avda. de la Merced, 109-131, 37005 Salamanca, Spain e-mail: [email protected]

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Hospitalization and disease produce a number of harmful long-term consequences (Burke et al. 1998; Zatzick et al. 2006). Therefore, it is important to find strategies to ameliorate these effects. Among them are the implementations of administrative and organizational changes in pediatric units, and individual and family interventions (Boone et al. 2004; Klinzing and Klinzing 1987; Patrick and Erickson 1988; Rodriguez and Boggs 1994), to reduce the impact of hospitalization on children’s quality of life (Ortigosa and Méndez 2000; Schipper et al. 1990; Walker 1992). Likewise, an increasing number of researchers and clinicians are focusing on measuring quality outcomes (Abbott and Gee 1998; Schalock 1996; Schalock and Verdugo 2002; Schuttinga 1995; Woodend et al. 1997). According to Brown et al. (1996), the concept of health is intimately related to the quality of life concept. Good health is a universal indicator of quality of life, but an overall good life is mainly a consequence of feeling healthier. The interest in the assessment of quality of life has impacted on the roles and responsibilities of decision makers regarding health care (Grégoir 1995; Read 1988; Schalock and Verdugo 2002). Schalock (1990, 1996) substantiates the relevance of the conceptualization and measurement of quality of life on two grounds; first, because this concept may help improve the whole society, and second, because it may allow the improvement of quality of human services. That requires measures to identify needs and perform quality of life appraisals of hospitalized children from a broader perspective, to include not only the absence of disease, but also their global physical, mental, and social well-being. Efforts have been made in this sense. For example, a number of studies have assessed the quality of life of children from a multidimensional perspective. Some of the most commonly employed measures are (Schalock and Verdugo 2002) the World Health Organization Quality of Life Assessment (WHOQOL-100; The WHOQOL Group 1993, 1994), the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36; Ware and Scherbourne 1992; Ware et al. 1993, 2000), the Nottingham Health Profile (NHP; Hunt and McEwen 1980), and the Sickness Impact Profile (SIP) (Bergner et al. 1981). Nevertheless, there is still a long way to go. There are not enough measures to assess children’s appraisal on hospitalization and health from a multidimensional perspective and regardless of their specific diseases (Bullinger and Ravens-Sieberer 1995; Casas 1992; Christie et al. 1993; Gill and Feinstein 1994; Moreno and Ximenez 1996; Cummins 1997; Schalock and Verdugo 2002). There are not enough intervention programs to meet the educational, affective, and the additional needs of hospitalized children (Hester 1989; PolainoLorente and Lizasoain 1992; Grau and Ortiz 2001). In addition, decisions concerning the children and their environments are typically taken without considering their opinions (Kiebert et al. 1994; Pass 1987; Woodgate and Kristjanson 1996). Considering these facts, the three aims of the current study are: (1) to increase the knowledge on appraisals of hospitalized children, (2) to determine the impact of this situation on their quality of life, and (3) to determine if pediatric units in general hospitals are prepared to meet the needs of hospitalized children. Two research questions and three hypotheses were stated: (1) what are the needs related to quality of life of hospitalized children, and (2) to what extent are general hospitals ready to meet these needs. We hypothesized that: (1) hospitalized children will experience

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low quality of life, (2) emotional states will significantly impact on their quality of life; and (3) general hospitals are not prepared to meet the needs of hospitalized children.

1 Method 1.1 Sample The sample was composed of 105 (79%) of 133 hospitalized children, ranging in ages from 6 to 15 years, from 8 of the 10 public hospitals in Castilla-Leon (Spain). The cutoff point regarding the age of participants was established after a previous pilot study. Those children whose health problems did not allow us to interview them, as well as children who, at the time of the interview, were not accompanied by a legal representative (i.e. parent, tutor), or whose parents or themselves refused to participate were included in the study. Regarding gender, 56.2% were male, and 43.8% were female. The average hospital stay was 8.3 days, with 23.8% of participants being hospitalized for two days, 21.90% for 3 days, and 19.2% from 10 up to 73 days. The most common diagnoses for their last admission were (Table 1) digestive disorders (20%) or orthopedic injuries (20%). Concerning comorbility, most hospitalized children (72.38%) do not have concurrent diagnoses. Of those children with additional disorders, an important percentage is related to digestive disorders (24.14%), or neurological disorders (24.14%). Reasons for previous admissions relate to hematological disorders (14.58%), followed by otorhinolaryngologic disorders (13.89%), neurological disorders (13.19%), and respiratory disorders (12.50%).

Table 1 Participants data on current diagnosis Current diagnosis

Number

Percent

Neurological disorders (cephalalgia, seizures...) Digestive disorders (abdominal pain, gastroenteritis, intestinal problems) Hematological disorders (lymphomas, tumors, medullary aplasia, ...) Orthopedic injuries (fractures, traumatisms, ...) Urological and renal disorders Appendectomy Endocrinologic disorders (hormonal studies, diabetes, ...) Respiratory disorders (asthma, pneumonia, bronchitis, quistic fibrosis, ...) Otorhinolaryngologic disorders Dermatological disorders Circulatory problems Psychological disorders (depression) Intoxication Ophthalmologic problems Non available Total

12 21 8 21 9 9 3 6 6 2 2 1 3 1 1 105

11.43 20.00 7.62 20.00 8.57 8.57 2.86 5.71 5.71 1.90 1.90 0.95 2.86 0.95 0.95 100.00


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1.2 Procedure Data were collected by individual interviews with prior written informed consent from their parents. Three measures were administered during a single interview: first, one on general issues about hospitalization; second, one on quality of life, and the third one on health. The 10 general hospitals in Castilla-Leon were contacted, and eight agreed to participate. In Castilla-Leon there are no children’s hospitals, so medical care for children is provided in the pediatric units of general hospitals. Data were collected after a pilot study in which the cutoff point regarding the age of participants was established. The 105 interviews required from three to five visits to each of the hospitals over a period of nine months. Each interview lasted approximately one hour and the interviewer administered the three. Interviews were supplemented with data from medical records, with confidentiality and anonymity being guaranteed during the whole process. 1.3 Measures For the current research, three measures were used. First, the Survey on Subjective Perception of Hospitalization and Hospital (CPSH; González-Gil 2002), a measure specifically developed for this research. It is composed of five sections: the first section includes general questions regarding hospitalization and diagnosis; the second section assesses the children’s knowledge of their hospitalization and their feelings about it; the third section assess activities undertaken during hospitalization; the fourth section asks children about their opinion toward the hospital; the fifth section asks about feelings during hospitalization. The measure was developed with help from experts whom rated the relevance of each of the items. Secondly, a translation and adapted version of the KINDL (Bullinger and RavensSieberer 1995; revised by Ravens-Sieberer and Bullinger 1997; Ravens-Sieberer and Bullinger 1998a, b) was used. This measure is composed of 40 items to be rated on a five-point Likert type scale to assess physical and psychological well-being, daily living activities, and social relationships of hospitalized children. This measure has been used in previous research in Spanish (Sabeh 2000), and it has proved its adequacy. For the current research, some changes were made to the KINDL survey (González-Gil 2002): (a) items were written in present tense; (b) some items were changed slightly; for example, “I enjoy the classes at the hospital” instead of “I enjoy the classes”; (c) wording clarification for some of the items. Six expert raters guaranteed that these changes would not affect the survey properties. Inter-rater agreements were calculated regarding valence and category of the items, and agreement levels (alpha=0.99 and alpha=0.98 respectively), supported the adequacy of the changes. In addition, internal consistency tests were performed for the scale and each of the factors. Coefficients ranged from alpha=0.40 and 0.88 for the different factors and the total scale (see Table 2). Thus, satisfactory levels have been obtained, with the exception of data for factor 4. The third measure, a translated and adapted version of the SF-36 (Ware and Sherbourne 1992; McHorney et al. 1993) was used. More specifically, items were adapted to be used with children. It is comprised of 36 items grouped into 14 types

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Table 2 KINDL reliability analysis

Alpha F1: Physical well-being F2: Psychological well-being F3: Daily living activities F4: Social Relationships Total

0.73 0.76 0.71 0.40 0.88

of questions regarding health. The measure includes two sections: first, appraisals regarding general health before hospitalization, and second, appraisals regarding health during the 4 weeks prior to hospital admission. A factor analysis with principal component method and Varimax rotation was performed. The factors were similar to those obtained in the original version resulting in eight factors that together explain 62% of total variance (Table 3). This result supports the construct validity of the adapted measure. Factor 1 examines objective physical limitations in performing daily living activities; factor 2 relates to subjective perception on health; factor 3 assesses health related interferences on normal performance in the four weeks prior to admission; factor 4 looks at limitations because of feelings; factor 5 refers to experienced pain; factor 6 relates to depressive and lack of well-being feelings; factor 7 relates to health interferences on moderate activities and factor 8 assesses subjective perception on overall health. Reliability analyses were performed, with acceptable alpha levels for all factors, except factor 8; this may be due to the small number of items in that factor (Table 4). Pearson correlations were performed among the factors, and significant correlations (alpha=0.05) were found for most of the factors. Second-order factor analysis was then performed using the same procedure as before. First order factors were grouped into a two-factors solution that together explains 55.9% of total variance. The first factor grouped first-order factors number 2, 3, 4, 5, 6 and 8; all of them related to personal appraisal of health and so we have named it “Individual appraisal of health and its impact”. The second factor grouped first-order factors number 1 and 7 that relate to objective health state so we have named it “Objective assessment of health and its impact”. Internal consistency coefficients were alpha=0.72 and 0.63, respectively (Table 4). In sum, the measure assesses two key health issues: objective and subjective, which agrees with the Table 3 Factor composition of the SF-36 (eigenvalues and relative and accumulated percentages of variance) Factor

Eigenvalues

% Variance

% Accumulated variance

F1: F2: F3: F4: F5: F6: F7: F8:

8.57644 3.30806 2.34217 2.11896 1.67493 1.51497 1.44180 1.35501

23.8 9.2 6.5 5.9 4.7 4.2 4.0 3.8

23.8 33.0 39.5 45.4 50.1 54.3 58.3 62.0

Objective physical limitations Subjective perception on health Interferences on normal performance Interferences of feelings Experienced pain Depressive feelings Health interferences on Activities Subjective perception on overall health

Perceived Quality of Life and Health of Hospitalized Children Table 4 SF-36 reliability analysis

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F1: Objective physical limitations F2: Subjective perception on health F3: Interferences on normal performance F4: Interferences of feelings F5: Experienced pain F6: Depressive feelings F7: Health interferences on activities F8: Subjective perception on overall health FI: Individual appraisal of health and its impact FII: Objective assessment of health and its impact Total

0.82 0.79 0.73 0.70 0.89 0.62 0.57 0.31 0.72 0.63 0.89

quality of life framework stated in this paper and according to the existing literature (Schalock et al. 2002; Verdugo et al. 2005); quality of life is both an objective and subjective construct, with the subjective appraisal being the key indicator of perceived life well-being. 1.4 Data Analyses All analyses were performed with the SPSS for Windows (Release 11.5.1)-statistical package (SPSS Inc., Chicago, IL, USA). Routine descriptive analyses were completed, as well as Pearson correlations. In addition, univariate and multivariate analyses were used to test for group differences on selected variables. Group differences were examined with Multianalyses of variance. Post-hoc univariate analyses were made if Wilks’s Lambda was statistically significant. Multiple comparisons were made using Scheffe and Duncan procedures.

2 Results Mean and standard deviation scores were calculated for each of the items and factors of the KINDL. Means ranged from 1.50 (item 34: “Other kids from the hospital come to see and play with me”) to 4.96 (item 4: “My parents are good to me”). All factors showed similar scores, with factor 4, social relationships, being the highest rated (mean=4.26) and factor 3, Daily living activities, being the lowest (mean= 3.70). Next, data from the Survey on Subjective Perception of Hospitalization and Hospital (CPSH; González-Gil 2002) were analyzed. Children were asked to identify likes and dislikes, as well as those issues that they would like to be different, or that they have missed at the Hospital. Individual answers were grouped into broader categories (Table 5). Five elements were analyzed: (1) rooms, (2) pediatric unit, (3) consulting rooms, (4) Nurses and medical assistants, and (5) doctors. Regarding rooms, physical conditions obtained a higher number of answers that denote satisfaction. On the contrary, medical equipment related to dislikes of the children. Regarding the pediatric unit, there was a predominance of factors that denoted dissatisfaction, especially with medical procedures and equipment. Regarding

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Table 5 Frequency of satisfactory and dissatisfactory sources Satisfaction sources

Number Percent Dissatisfaction sources

Number Percent

Rooms Physical conditions

111

94.07

7

5.93

Medical equipment Physical conditions Lying in bed Organizational factors: Schedules

18 78 5 3

16.98 75.47 4.72 2.83

70

78.65

Non-medical equipment and instruments Medical equipment and procedures Personnel: doctors and nurses Other patients (sick kids, children who cry, ...)

22

40

18

32.73

5 5

9.09 9.09

8.99

Rules (not being allowed to go out)

5

9.09

31

46.97

Procedures and medical instruments 63

74.12

30

45.18

14

16.47

5

7.58

Furniture and non-medical equipment Organizational factors:(sharing rooms with adults, seeing other adult patients ...)

8

9.41

100 11 12

81.3 8.94 9.76

Temperament Job-related procedures Physical looking

33 46 6

38.82 54.12 7.06

74 24 4

72.55 23.53 3.92

Temperament Job-related procedures Physical appearance

62 21 3

72.09 24.42 3.49

Organizational factors: (having roommates, being alone) Pediatric units Non-medical equipment and instruments

Personnel: doctors and nurses 3 Other patients (being with 8 other children, seeing younger children) Other 8 Consulting rooms Furniture and medical equipment Furniture and non-medical equipment Other

Nurses Temperament Job-related procedures Physical looking Doctors Temperament Job-related procedures Other

3.37 8.99

consulting rooms, answers denoted discomfort rather than comfort. In addition, and congruent with previous results, procedures and medical equipments are the highest source of dislikes. Concerning human resources, and more specifically regarding nurses, there is a predominance of answers that denote satisfaction, especially with their behavior with hospitalized children. On the contrary, job related issues (give them injections, cures), are the main sources of dissatisfaction. Regarding doctors, an important percentage of answers (72.09%) that denote dissatisfaction are related to their behavior with the children. Lastly, regarding suggestions for improvement, the main results are: 66 children (62.86%) mentioned the need for painting walls and rooms with “happier” colors, and 59 children (56.19%) mentioned the need for having games – chess, cards, puzzles, toys – in the rooms. Regarding pediatric units, 41 children (56.19%)


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suggested the inclusion of ornaments such as pictures, drawings, and posters, and 34 children (32.38%) suggested painting the walls and doors colorfully. Concerning consulting rooms, 32 children (30.48%) suggested moving out of view all equipment, machines, or medical instruments. Regarding nurses, 34 children (32.38%) suggested they should be “kinder” and “nicer”, and regarding doctors, 78 children (74.28%) recommend they improve their character. In order to test the impact of emotional states on children’s quality of life, three set of multiple analyses of variance were made by grouping participants into two groups; feeling/not feeling worried, nervousness, and scared, according to answers from the fifth section of the CPSH. Dependent variables were the four factors of the KINDL. ANOVA tests were then performed if MANOVA were significant. Thus, regarding being or not being worried, multivariate analyses were significant (Wilks’ Lambda=0.83126, F (4,99)=5.02418, p