Comparison of Health-Related Quality of Life Among 10- to 12-Year-Old Children With Chronic Illnesses and Healthy Children: The Parents’ Perspective

INTRODUCTION

Chronic illnesses among school-age children are increasing as children are surviving illness and managing their conditions (Lightfoot, Wright, & Sloper, 1999). Most children spend a considerable part of each day at school; therefore, parents’ perspectives on issues relating to the provision of health care to chronically ill children are important. Notaras and colleagues (2002) found 48% (n = 161) of parents of chronically ill children perceived that their child required some form of care or attention while at school; 75% of the parents said special knowledge and skill was required to deliver this care; and 56% of the parents did not feel that teachers had the knowledge to look after their child during school hours.

Little research has focused directly on health-related support in school for children with chronic illnesses. Lightfoot and colleagues (1999) found that 11- to 16-year-old chronically ill children and children with disabilities (n = 33) were actively managing the effects of their condition but needed informal support from parents, teachers, and close friends. As in other Western cultures, asthma is the most common chronic illness in children in Iceland with prevalence of 9% among 10- to 11-year-old children (Clausen, Bjorksten, Haraldsson, & Kristjansson, 2002; Mannino et al., 1998). Based on parents’ reports 17–20.1% of Icelandic children aged 2–17 years and 13.6% of 7- to 12-year-old children have been reported to have long-term illnesses (Berntsson & Kohler, 2001; Pedersen & Madsen, 2002). However, research is lacking on the quality of life of chronically ill school-age children, and little is known about parental perception of children’s health-related quality of life (HRQOL) when the child is diagnosed with a chronic health condition or illness.

LITERATURE REVIEW

Quality of life is defined as the satisfaction felt by an individual within various areas of his/her life (Vila et al., 2003). Numerous tools have been developed to assess quality of life associated with various conditions, particularly chronic diseases. Interest in the impact of illness on day-to-day functioning is leading investigators to include both disease specific and generic HRQOL questionnaires in a broad range of clinical studies. HRQOL includes both physical and psychosocial functioning.

According to Varni, Burwinkle, Rapoff, Kamps, and Olson (2004), pediatric HRQOL instruments must be sensitive to cognitive development and include child self-report and parent proxy report to reflect their unique perspectives. Lack of agreement between self-and proxy report has been documented (Annett, Bender, DuHamel, & Lapidus, 2003; Guyatt, Juniper, Griffith, Feeny, & Ferrie, 1997; le Coq, Boeke, Bezemer, Colland, & van Eijk, 2000; Varni et al., 2004). No correlation was found between asthma control as viewed by the clinician and the quality of life scores of the children. In addition, low correlation was found between the children’s and the parents’ rating of HRQOL (Williams & Williams, 2003).

Self-report is considered the standard for measuring perceived HRQOL. Nevertheless, it is typically the parents’ perceptions of their children’s HRQOL that influence health care utilization. The lack of agreement observed between child self-report and parent proxy report supports the need to measure the perspectives of both the child and parent when evaluating HRQOL because these perspectives may be independently related to health care utilization and risk factors. In a study on quality of life in 228 Dutch families of children with asthma, the parent version of the child’s quality of life showed greater ability to detect changes in children’s quality of life over time than the child version of the scale (le Coq et al., 2000). Also, Annett and colleagues (2003) found the correlation between child and parent reported quality of life to improve with increasing age of the child.

Although quality of life from the child’s or the parents’ perspective has not received much attention in the literature, the health status of school children has been widely studied. Like other Western cultures, obesity among Icelandic adolescents has increased significantly over the last decades (Briem, 1999; Olafsson, Olafsson, Magnusson, & Eggertsdottir, 2003; World Health Organization, 1998). Obesity not only affects the physical health of children but can also affect children’s general well-being and academic performance (Olafsson et al., 2003). Nevertheless, only 50% of school nurses have been found to provide overweight children with counseling and referral only when the parents asked for help (Moyers, Bugle, & Jackson, 2005).

Icelandic children have been found to be generally in good physical and psychosocial health because they are raised in an affluent society in which standard of living is high and access to health care is basically free. However, the society is changing and is becoming faster paced than before (Fagrad Landlaeknisembaettisins, 2003). The prevalence of chronic illnesses in children in Iceland has increased from the years 1984–1996, and it has been concluded that the incidence of chronic illnesses in Icelandic children is higher than in other Nordic countries that have similar social structures (Berntsson & Kohler, 2001; Pedersen & Madsen, 2002). In addition, Icelandic children of parents with low socioeconomic status have been found to have poorer health than children of more affluent parents; however, no difference was found between these two groups in utilization of physician services (Halldorsson, Cavelaars, Kunst, & Mackenbach, 1999).

PARENTS’ PERCEPTION OF THEIR CHILD’S QUALITY OF LIFE: A CASE EXAMPLE

Although improvement has been made in long-term survival rates for many childhood cancers, a child and his/her family can suffer poorer health and lower quality of life after the cancer treatment is over. John is a 10-year-old Icelandic boy who was diagnosed with lymphoma a little over 2 years ago. According to his parents, of everything they had experienced (e.g., previous divorces, the father’s manic-depressive disorder, losing their home because of fire, and earthquakes), John’s cancer diagnosis was their worst life experience. The parents coped differently with the diagnosis. The father thought John would die of the disease, causing him to become distant and isolated. John’s mother, on the other hand, coped by caring even more for John and monitoring him carefully throughout his treatment.

John’s parents described their son as sensitive and a good kid. Although he was big for his age, his parents thought he was in a good physical shape 2 years ago. However, after the cancer diagnosis John gradually started to gain weight. Initially he lost a little weight because of the treatment, but he was quick to regain it. Now, 2 years after the diagnosis, John is considered to be “cured” and only needs to visit his doctor for regular check-ups. However, John’s weight gain did not stop, and today, John, who is 5 ft 2 inches tall, weighs 203 lb. John has gained close to 88 lb over 2 years.

According to John’s parents, his obesity has lowered his self-esteem. John believes he is worthless. Because he does not want anyone to see him, he has withdrawn from friends. John’s weight also made him a target for bullying at school. Some of his classmates consistently tease him. His mother is very concerned about her son’s experience. Sometimes she is angry with the teachers and school, but at the same time she is vulnerable and feels helpless. John’s father is angry with the school administration, stating, “They should be able to handle a situation like this.” He has talked to them, but things have not changed. John’s parents desperately want to help their son, but they are not sure what to do. How can John’s family handle this situation? Do they need further professional help regarding John’s obesity and the bullying to enhance his health and well-being? How do John’s mother’s and father’s own well-being and family demands affect their perception of John’s HRQOL?

PURPOSE OF THE STUDY

The purpose of this study was to evaluate mothers’ and fathers’ perception of their child’s HRQOL among 10- to 12-year-old Icelandic children with or without a chronic health condition. The research questions were as follows: Is there a gender difference between mothers’ and fathers’ perception of their child’s HRQOL based on (a) age of their child, (b) gender, (c) bullying victimization, (d) participation in after school activity, (e) visits to school nurses, and (f) if the child had a chronic health condition or illness.

CONCEPTUAL FRAMEWORK

The conceptual framework that guided the research was the Resiliency Model of Family Stress, Adjustment and Adaptation (McCubbin & McCubbin, 1996). In the model, adaptation is the central concept. It is influenced over time by the accumulation of family and care giving demands, family resiliency, appraisal such as the parents’ perceptions of their child’s quality of life, resources and problem solving, and communication among family members. Appraisal is emphasized because a dynamic family appraisal process spans a period of time and involves the family unit with its identity and values, the community, and the members acting as individuals.

Based on the Resiliency Model, the review of the literature, and the case example, it was hypothesized that (a) mothers and fathers would significantly differ on their perception regarding their child’s HRQOL (on the total score and the four subscales); (b) parents who had a child with chronic health condition or illness(es) would perceive their child’s HRQOL to be significantly lower than parents’ who had a child without chronic health condition or illness; and (c) mothers’ and fathers’ perception of their child’s health status, their perception of their child’s health promotion, parents’ education, employment status, annual income of the family, number of children in the family, gender of the child, age of the child, the child’s chronic health condition/illness, whether or not the child was a victim of bullying or bullying perpetrator, visits to the school nurse over 1-week period, and after school activity would significantly predict mothers’ and fathers’ perception of their child’s HRQOL. The hypothesized model to be tested is illustrated in Figure 1.

METHODS

The study is a part of a larger cross-sectional study on generic HRQOL among 10- to 12-year-old Icelandic school children from both the parents’ and the children’s perspective. Data were collected from March 2004 to June 2004 in 12 randomly selected public elementary schools in Reykjavík, the capital of Iceland. The study was introduced to 1,079 children in 5th and 6th grade, their parents, and teachers. From this group, 480 children (209 boys and 271 girls) and 912 parents (510 mothers and 402 fathers) gave their written consent (both the child and parents signed the consent) and participated in the study (45% participation). The parents had, on average, cohabited for 9.98 years (SD 7.0) ranging from 1 to 23 years. Majority of the children, 70.2% (n = 358), were living with both parents, 8.1% (n = 42) were living with one biological parent and a step parent, and 21% (n = 107) were living with one parent; out of those children 4.7% had parents with shared custody. The inclusion criteria for the study were as follows: (a) the children needed to be in 5th or 6th grade and (b) needed to read and write Icelandic according to their age reading level. The parents needed to read and write Icelandic.

Approval was received from the Institutional Review Board of the Reykjavík Health Care Services, Reykjavík Council of Education, the principals in the 12 elementary schools, and the National Bioethics Committee, and the study was reported to the Data Protection Committee. All children in 5th and 6th grade from the participating schools were informed about the study by one of the investigators and the school nurse in each school, who gave the children a package of documents to bring home to their parents. The package included an introduction letter, a form for informed consent, two questionnaire booklets (one for the mother and one for the father), and empty envelopes to bring back to the school nurse with a signed consent form (from the parents and child) and completed questionnaires from the parents.

RESULTS

Demographic information regarding the families (parents and children) are listed in Tables 1 to 3. The majority of mothers were educated at either a technical institution or a university (n = 417; 84.8%) and 88% of fathers (n = 347) had a technical or a university education (Table 2). Most of the mothers (81.5%) and fathers (95.2%) were either married or cohabiting with their partner, and the majority of mothers (n = 438; 87.4%) and fathers (n = 387; 98.9%) were working outside the home. Of the children, 142 (27%) were diagnosed with a chronic health condition or illness as reported by their parent. Seventy-nine were diagnosed with physical condition or illness, and 67 were diagnosed with a psychiatric condition or learning disability, hyperactivity, or dyslexia (Table 3).

DISCUSSION

Measuring HRQOL for 10- to 12-year-old school children with or without chronic health conditions or illnesses from the parents’ perspective is important to gain a more holistic picture of how parents perceive the health status of their children. The findings indicate that mothers and fathers of children with chronic health conditions perceived their child to have significantly lower HRQOL than parents of healthy children. This finding is new in the literature and emphasizes the need for developing effective school-related interventions for families of children with chronic health condition so that they receive the care they need during school hours.

Interestingly, no gender difference was found between mothers’ and fathers’ perception on the total score on their children’s HRQOL or on the physical, emotional, or social functioning subscales, indicating that parents are more alike than different in their perception of their child’s HRQOL. However, a gender difference was found between the parents on the school functioning subscale, in which mothers perceived their children to have significantly higher school functioning than fathers. It might well be that Icelandic mothers are more involved in their children’s homework and school activities than fathers; therefore, mothers may perceive their children to have higher school functioning. Of the mothers, 43.7% were working part time or not working outside the home, but only 2% of Icelandic fathers were working part time or not working outside the home, which could also explain why mothers might be in a better position to follow their children’s school functioning than fathers.

Gender difference was found regarding the parents’ perception of HRQOL based on the gender of the child. The Icelandic fathers perceived their daughters to have significantly higher HRQOL than their sons. Also, a gender difference was found between mothers and fathers when visits to the school nurse were evaluated; fathers of children who visited the school nurse over a period of 1 week perceived the HRQOL of their children to be significantly lower than mothers. These findings have not been reported previously in the literature and give new information regarding how parents perceive the quality of life of their child differently. These findings are also consistent with the Resiliency Model (McCubbin & McCubbin, 1996) in which individual family members are believed to engage in a dynamic process over time that shapes their identity and values.

Findings from the regression analyses indicate that there are different factors that predict parents’ perception of the HRQOL for their child. Surprisingly, demographic variables did not predict parents’ perception of their child’s HRQOL. However, for the mothers, their perception of their child’s health status, being a victim of bullying in school, child’s chronic health condition or illness(es), and mothers perception of their child’s health promotion significantly predicted mothers’ perception of HRQOL of their child. For the fathers, their child’s health status and health promotion, after school activity, and bullying victimization significantly predicted the perception of their child’s HRQOL. For both parents, health status, health promotion, and bullying victimization significantly predicted their perception of their child’s HRQOL, but, for mothers, chronic illness and, for the fathers, after school activity added to the parents’ prediction of their child’s HRQOL. According to the Resiliency Model, family members’ appraisal is shaped by their experience, relationships, and values and by the community, which might explain the difference in mothers’ and fathers’ predictors of HRQOL in this study.

CONCLUSION

Parents’ perception of their child’s HRQOL, especially among families of children with chronic health conditions or illnesses, is an important phenomenon to study because information regarding HRQOL early in the lifespan might help identify health-related problems and give school nurses an opportunity for developing interventions. As presented in the case example, the parents of a child with cancer perceived the HRQOL of their son to be low. The family needed support and assistance because their son developed obesity after a cancer diagnosis and was bullied in school. The findings from this Icelandic study and the case example emphasize the need to develop and test interventions for school-age children with chronic health conditions so these children would receive the care and support they need during school hours.