|Year : 2018 | Volume
| Issue : 1 | Page : 43-48
Quality of life of children with asthma and their caregivers
Bendangmenla Ao1, Bharathy Jacob2, Mary A Johnson3
1 Assoc Professor, CON, Christian Institute of Health Science & Research, Dimapur, India
2 Professor, CON, Christian Institute of Health Science & Research, Dimapur, India
3 Professor, College of Nursing, CMC, Vellore, India
|Date of Web Publication||11-Jun-2020|
Source of Support: None, Conflict of Interest: None
Asthma ranks as the 14th disorder in the world in terms of the extent and duration of disability, with 14 % of children worldwide experiencing asthma symptoms. Both children and their families are at risk of impaired psychological functioning, well-being, and Quality of Life (QOL). A descriptive study was undertaken to assess the QOL of children with Asthma and their caregivers visiting the outpatient department of a tertiary care center in South India. Using consecutive sampling technique 77 children and 77 caregivers were recruited for the study. Data were collected using a self-administered questionnaire, designed by the investigator and was validated by experts. Analysis revealed that 65.9% and 54.5% of the children with Asthma had moderate quality of life among the 5-10 and 11-15 year old age groups respectively. Among the caregivers 64.9% had moderate QOL and 2.6% had poor QOL. Demographic variables such as living in urban locality (p=.03), male children (p=0.05), number of days absent in school (p=.01) were significantly associated with poor QOL among children between 11-15 years. A highly significant association was found between the QOL of children and the caregivers (p<.001). Every health professional should take active initiative in planning ongoing Asthma education which can improve the psychological functioning and QOL of both the child and the care giver.
Keywords: quality of life, children, Asthma, care givers
|How to cite this article:|
Ao B, Jacob B, Johnson MA. Quality of life of children with asthma and their caregivers. Indian J Cont Nsg Edn 2018;19:43-8
| Introduction|| |
Health problems though often mild, recur throughout childhood but some children unfortunately end up with chronic conditions which impair their day to day activities to a large extent. Asthma is a serious burden and Asthma related deaths are more common in low and middle-income countries (Global Asthma Network, 2014). According to the Global Burden of Disease studies Asthma is the 14th disorder causing disability during a persons lived years. Asthma affects the quality of life of people not only due to the physical symptoms but also due to the psychological and social effects. Asthma accounts for 334 million people globally, and 14% of children suffer from Asthma, approximately affecting one in seven of the world’s children (Global Asthma Network, 2014). Asthma is a chronic inflammatory disease of the airway and is estimated to affect as many as 300 million people worldwide - a number that could increase by a further 100 million by 2025. With the growing number and need of Asthma children, it increases the burden among the health care giver and poses strain over the work activities, thereby decreases the parents’ quality of life. Over 50 million people in Central and Southern Asia have Asthma, and many do not have access to the medications that can control the disease. An absolute 2% increase in the prevalence of Asthma in India would result in an additional 20 million people with the disease (Masoli, Fabian, Holt, & Beasley, 2004). India accounts for 10% ofthe global Asthma burden and prevalence of childhood Asthma in India is between 2.1% to 11.8% (Mukherjee, 2012). Between 100 and 150 million people around the globe suffer from Asthma and this number is rising. World-wide, deaths from this condition have reached over 180,000 annually. In India, rough estimates indicate a prevalence of between 10% and 15% in 5-11 year old children (World Health Organisation [WHO], 2016). Treating morbidity associated with childhood Asthma can deplete the family’s financial and social resources and therefore treatment adherence and Quality Of Life (QOL) in children with Asthma need to be addressed.
QOL measurement provides valuable information to all members of health care team. QOL assessment has become an important measure of the nursing outcome variable as cited by King and Hinds (2003). Asthma is a major public health problem and increasing concern in United States. Low income population experience disproportionately higher morbidity and mortality. Asthma is ranked third in causing hospitalization among children below 15 years of age, and the estimated cost of treating Asthma in children younger than 15 years of age is 3.2 billion dollar per year (Centre for Disease Control [CDC], 2002). The occurrence of chronic diseases death is 80% in low and middle income countries (WHO, 2005). Asthma accounts for numerous nights of interrupted sleep, limitation of activities and disruptions of family and caregivers routine. Although children with Asthma symptoms do not visit the emergency department they can still be physically incapacitated to live a normal life.
Al-Akour and Khader (2008) in their study used the Pediatric Asthma Quality of Life Questionnaire (PAQLQ) to measure how Asthma impaired the daily lives of 200 Jordanian children with Asthma. The findings revealed that children with Asthma scored towards the negative end of the QOL scale. QOL scores were lower in limitation on activities than in emotions symptoms. The most restricted ability was found in running. They also found an association between age (younger), gender (female children) and place of living (rural areas) and lower QOL. In a cross sectional community based study Van Gent et al. (2007) assessed the quality of life of children with undiagnosed and diagnosed Asthma among the school children aged 7-10 years and their caregivers. They reported that QOL scores among children and caregivers were lower if the child had been diagnosed with Asthma (p<.05) with lowest score in diagnosed Asthmatic children and reported to have more school absence (p<.05). Overall evidence from literature suggested a low QOL in children with Asthma. The researcher, in her clinical experience, found that many children from across the country come to the Out Patient Department(OPD) with Asthma, which increases the family burden and impairs or decreases the QOL among the parents as well as the affected children. These observations motivated the researcher to find the impact of the disease on the QOL of children and the primary healthcare giver of Asthma, so as to prevent future morbidity and improve the patient and caregivers well-being.
| Objectives|| |
- To assess the QOL of children with Asthma
- To assess the QOL of caregivers of children with Asthma
- To determine association between the QOL of children with selected demographic and clinical variables
- To find the association between QOL of caregivers of children with Asthma with selected demographic and clinical variables of children with Asthma
- To find the association between QOL of children with that of the caregivers
| Methods|| |
The study design was descriptive in nature. It was conducted in Child Health OPD of a tertiary care hospital. The sample size was 77 children and their 77 caregivers. The samples were selected using consecutive sampling technique. The instrument on quality of life was formulated by the investigator by interviewing the children with Asthma and their care givers. The instrument was tested and validated by experts in the fields and translation was done in Tamil, Hindi, and Bengali and back translated to English. The content validity index was 0.98. The instrument was a 5 point Likert scale consisting of a total of 21 questions. A score of 4 to 5 was classified as good quality of life; a score between 2.1 to 3.9 was classified as moderate quality of life and 1 to 2 was classified as poor quality of life. The study was conducted after the approval by the College Research and Ethics Committee and after obtaining informed written consent. Subjects were explained about the purpose and need of the study, and assured confidentiality throughout the study. The data was collected for a period of six weeks from the Child Health OPD as well as the Asthma clinic. The patient’s chart was checked to identify those children who met the inclusion criteria. Both the caregiver and the child were allowed to fill the questions in separate formats, without the interference of each other as it may alter the responses. If there were more than one caregiver accompanying the child the one who took close care of the child was asked to fill the QOL questionnaire. Based on their experiences in the last 4 weeks they were instructed to score each item in the questionnaire. Descriptive and Inferential statistics were used to analyze data.
| Results|| |
For data analysis the age group of the children was divided into 2 groups as 5-10 years and 11-15 years. Majority of the children (81.8%) were from the age group of 11-13 years. Majority of the children were males in both age groups with 77.3% in 5-10 years and 78.8% in 11-15 years. Majority of the children were from rural (61.4 %) in 5-10 years. The children had good compliance to treatment in both the age groups with 81.8% among 5-10 years and 69.7% among 11-15 years. The number of children on inhalers were 90.9% among 5-10 years and 97% among 11-15 years.
Among the caregivers more than half of the caregivers (61%) were in joint families. Subjects in the age group between 31- 40 years were 44.1%. More than half of the caregivers who were in the study were females (58.4%).
Majority of the children in both 5-10 and 11-15 years age group had moderate QOL. Only 2.3% among 5-10 years and 6.1% among 11-15 years had poor QOL (see [Figure 1]).
[Figure 2] shows that 11.4% in the 5-10 years age group had poor QOL in the social domain as compared to other domains with 6.8% in physical and 9.1% in emotional domains. In the age group 11-15 years 6.1% of children had poor QOL in emotional and social domain, while in physical domain it was only 3%. Moderate QOL in physical domain was seen in 66.7%. QOL was perceived as moderate (36.3%)in 11-15 year olds and good in emotional domain(43.2%) and 57.6% in 5-10 year and 11-15 year olds respectively
|Figure 2: Distribution of children in relation to QOL in different domain|
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Among the caregivers of children with Asthma, 5.2% had poor QOL equally in both the physical and emotional domains. Majority of the caregivers had moderate QOL in physical (67.5%), emotional (58.4%), and social (35.1%) domains. Good quality of life was reported by 61% of the caregivers in the social domain. The overall QOL was moderate and good in 64.9% and 32.9% respectively (see [Figure 3]).
Chi square test was done to determine the association of demographic and clinical variables with QOL of children and care givers. There were no significant association between the clinical and demographic variables and the quality of life among children in age group 5 -10 years.
There was a significant association between the QOL and the sex of the children (p=.05) with females having better QOL than males and children living in the rural area had better QOL (p=.03) than those in urban area. Children who were never absent in school had good QOL with (p=.01) in the age group of 11-15 yrs. The other variables compared were not statistically significant.
There is no statistical association between the QOL of caregivers and their demographic variables. There was a significant relationships between the QOL of caregivers with the clinical variable of children related to absent school days (p=.02) and a history ofAsthma in the family (p<.001).
[Table 1] reveals that there was a significant association between the QOL of caregivers and their children (p<.001).
| Discussion|| |
The study was undertaken to assess the QOL of children with Asthma as well as their caregivers. The overall QOL of children who rated on a five point Likert scale showed that 65.9% (29) among the age group of 5-10 years and 54.5%(18) among 11-15 years had moderate QOL and 2.3% (5-10 years) and 6.1% (11-15years) had poor QOL. This result was consistent with a study done by Rich, Lamola and Woods (2006) in assessing the QOL among adolescent using the PAQOLQ which revealed a mean score of 4.78. Majority of the children had a moderate QOL. Another study done by Boran, Tokuç, Pisgin, and Oktem (2008) reported that overall median QOL score was 5.9 and 51% of the patients reported that Asthma affected their lives, 55% reported impairment in physical activities, 55% reported impaired QOL due to Asthma symptoms like shortness of breath, cough or wheeze, and 52% felt irritable, frustrated or left out and that they could not keep up with others because of their Asthma.
The QOL of caregivers of Asthmatic children was assessed under three aspects i.e., emotional, physical, and social life. It is important to note that only 2.6% of the caregivers had poor QOL, and the rest had moderate and good QOL. Similar finding was seen in other studies (Dalheim- Englund, Rydstrom, Rasmussen, Moller, & Sandman, 2004) in which they found that most parents with Asthma evaluated their QOL as close to the positive or good end of the scale and that the diagnosis of Asthma in their children did not influence the parents’ QOL to a greater degree. This finding could be due to their unique individual differences in terms of their life perception and adjustment styles. It also may be due to the fact that the absolute impact of child symptoms on caregivers QOL varies among different individual perceptions.
Chi-square was used to identify the association between the QOL of children with the clinical and demographic variables. Out of the 44 children in the 5-10 years age group, there were no significant findings in the gender but among the 11-15 years significant association was identified (p =0.05) with gender. More male children (68.2%) had poor to moderate QOL as against only 28.6% of females who had poor to moderate QOL. They found that QOL was more persistently impaired in males than in females. Contrary to these findings Boran et al. (2008) did not find any statistical difference with the sex of the child.
It is also relevant to note that majority of urban children had poor to moderate QOL (80%) as against 44.4% (p=0.03) in the rural areas which could be due to the industrialization and increased stressors among the urban dwellers. Similar to this study it was noted by Chakravarthy, Singh, Swaminathan, and Venkatesan (2002) that majority of the patients with Asthma were from urban areas.
With regard to association between QOL of children and the clinical variables, no significant association was noted except between absent school days and QOL. Out of 33 children, 72.7% of children had poor to moderate QOL who absented themselves from school for more than 10 days (p<.01). It was supported by a study done by Jenifer (2008) which showed that QOL scores were significantly associated with absent school days (p<.03). It was also supported in a study done by Williams (2005) in which a negative correlation between the QOL score of both the caregiver and the children with the number of missed school days at p<.001. Poor QOL can be the cause of school absenteeism and this can interfere with the children’s social and knowledge development.
It was found that caregivers who were unemployed had better QOL as compared to other employed workers. It could be because the caregiver could spend more time with the child during their illness. The study also revealed that those caregivers who had less children had better QOL as compared to those who had more children. This may indicate that with more number of children they may be burdened with the heavy daily schedules, unforeseen tasks and responsibilities. There was a highly statistical significant association between the QOL of children with the QOL of caregivers (p=<.001).
| Conclusion|| |
This study was done to assess the QOL of children with Asthma and their caregivers. QOL may depend on different individual perception. It was found that majority of the children as well as the caregivers had moderate QOL and a negligible percentage had poor QOL. It may be due to better compliance to treatment, quality of care and lifestyle modifications. However ongoing assessment of QOL of the child with Asthma and the caregiver need to be included as vital part of follow up care. Such initiative will pave way to implement interventions that would improve and maintain QOL in both children and caregivers.
Conflicts of Interest: The authors have declared no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3]