What is the impact of asthma on the quality of life of parents and caregivers of children who have the disease?

Cristian Roncada, Postdoctoral degree in Child Health, Pontifícia Universidade Católica do Rio Grande do Sul, Porto Alegre, RS, Brazil. E-mail: crisron@gmail.com
 

This study aimed to evaluate the levels of quality of life of parents and caregivers of children diagnosed with asthma. The results demonstrate that the quality of life of individuals who take care of asthmatic children are significantly inferior compared to those responsible for healthy children or even children with asthma remission due to the care the disease requires. 

Asthma can be a stressful condition not only for patients but also for their caregivers. The way the family faces the disease directly influences the child's adherence to treatment. Thus, the objective of this study was to evaluate the levels of quality of life of parents/caregivers of asthmatic children when compared to a control group and subgroups, according to the severity classification of the disease.

Researchers from the Pontifícia Universidade Católica do Rio Grande do Sul (PUCRS), in Porto Alegre, Rio Grande do Sul, assessed 101 parents/caregivers of asthmatic children – in outpatient follow-up at a reference center in pediatric asthma in Southern Brazil –, clinically healthy ones, and those with asthma remission – selected by convenience in schools from the local community. Among the parents/caregivers chosen, 49% belonged to the asthma group and 51% to the control group. The study was carried out from April 2015 to March 2016 and published under the title "Evaluation of quality of life of parents and caregivers of asthmatic children" in the Revista Paulista de Pediatria (vol. 36, No. 4). The case-control study used respiratory questionnaires to classify the sample. To asses the levels of quality of life, researchers applied the instrument developed by the World Health Organization (WHO) – World Health Organization Quality Of Life-Bref (WHOQOL-BREF) –, previously validated for the study group, and compared the physical, psychological, social relations, environmental, and total score domains, in addition to the correlation between levels of self-perceived quality of life and health satisfaction.

The results indicate that the levels of quality of life of caregivers of children with persistent asthma are lower than those of parents of healthy children or children with asthma remission in all domains established by WHOQOL-BREF. In the quality of life assessment regarding disease severity, the results show significant differences between parents of healthy children or children with asthma remission and those with other levels of disease severity (mild, moderate, or severe asthma). Differently than expected, parents of children with severe asthma demonstrated more acceptable levels of quality of life among the three disease severities. This result is due to these children having severe asthma resistant to treatment and participating in a specific treatment program, which leads to a better control of the disease.

According to the researchers, increasing the number of clinical studies that address this issue is of utmost importance, as the quality of life of guardians of asthmatic children can directly or indirectly interfere in the child's treatment and care.1 Patients with this disease need special care, hence the importance of how guardians face their reality.2 Based on information found in other studies,3-5 the authors believe that these guardians also need psychological support, due to the strain of the disease, which can be as detrimental to them as to the patients. 

1. Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M. Measuring quality of life in the parents of children with asthma. Qual Life Res. 1996;5:27-34 [cited 2018 Nov 10]. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8901364

2. Sawyer MG, Spurrier N, Whaites L, Kennedy D, Martin AJ, Baghurst P. The relationship between asthma severity, family functioning and the health-related quality of life of children with asthma. Qual Life Res. 2000;9:1105-15 [cited 2018 Nov 10]. Available from: https://www.ncbi.nlm.nih.gov/pubmed/11401043

3. Everhart RS, Fiese BH, Smyth JM. A cumulative risk model predicting caregiver quality of life in pediatric asthma. J Pediatr Psychol. 2008;33:809-18 [cited 2018 Nov 10]. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18356183

4. Kaugars AS, Klinnert MD, Bender BG. Family influences on pediatric asthma. J Pediatr Psychol. 2005;30:123 [cited 2018 Nov 10]. Available from: https://www.ncbi.nlm.nih.gov/pubmed/15347697

5. Sales J, Fivush R, Teague GW. The role of parental coping in children with asthma’s psychological well-being and asthma-related quality of life. J Pediatr Psychol. 2008;33:208-19 [cited 2018 Nov 10]. Available from: https://www.ncbi.nlm.nih.gov/pubmed/17717005

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