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1.
Glob Pediatr Health ; 8: 2333794X211065333, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34950751

RESUMO

Introduction. Caregivers of children with chronic illness are at risk of having impairment in their quality of life (QOL). We systematically reviewed the available literature related to the Health Related Quality Of Life (HRQOL) of caregivers of children with Phenylketonuria (PKU). Methods. We comprehensively searched in electronic databases including Scopus, Science Direct, CINAHL, Medline, PubMed, Google scholar, and ProQuest. The search criteria included studies with samples more than one, children suffering from PKU, exploring parents or primary caregiver's HRQOL, published from 2010 to 2020, full article available for download and published in English. Eight studies including 5 cross sectional studies, 1 open label trial, and 2 surveys were systematically reviewed. Results. Seven out of 8 studies have established a negative correlation between PKU and parent's HRQOL in at least 1 of the domains. In one study, the HRQOL of parents is higher than their population norms. Conclusion. Most of the caregivers had poor to moderate HRQOL. More studies are required to explore HRQOL of caregivers of children with PKU using similar tools and outcome measures addressing all the domains of HRQOL in order to have more clarity on the impact of PKU on caregiver's HRQOL. Interventional studies might help in improving the HRQOL of caregivers.

2.
Diabetes Metab Syndr ; 11(1): 25-29, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-27477532

RESUMO

The study was conducted to assess the health related quality of life of the parents of children with inborn errors of metabolism (IEM). The study was conducted at the Genetic and metabolic outpatient department of Sultan Qaboos University Hospital, Oman. The parents of children with metabolic diseases who were accompanying their children to the outpatient clinics were the samples. An explorative descriptive survey design and Convenient sampling technique were used to select the sample. Study included 72 parents of children with metabolic diseases aged between 20 and 55 years. The RAND 36-Item Health Survey version was used to assess the health related quality of life of parents. The results shows lower mean scores in subscales of 'general health' and vitality. Parents with higher educational levels showed higher levels of PCS and MCS scores than parents with lower educational levels. Parents with higher monthly income and younger age showed higher quality of life. A significant association was found between supporting persons and HQoL in the dimensions of the "role limitations due to physical" (p<0.03), and social functioning (p<0.04). Empowering the parents by helping them to actively seek and maintain social support is an important step in improving the health related quality of life.


Assuntos
Educação Infantil/psicologia , Saúde Mental , Doenças Metabólicas/psicologia , Poder Familiar/psicologia , Pais/psicologia , Qualidade de Vida , Adulto , Criança , Relações Familiares , Feminino , Seguimentos , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Inquéritos e Questionários , Adulto Jovem
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