title: Parenting a child with metabolic diseases: Impact on health related quality of life of parents.
abstract: 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.
authors.affiliation: College of Nursing, Sultan Qaboos University, Oman. Electronic address: deepash@squ.edu.om.
authors.forename: Deepa
authors.initials: D
authors.lastname: Shaji Thomas
authors.affiliation: College of Nursing, Sultan Qaboos University, Oman. Electronic address: shakman@squ.edu.om.
authors.forename: Lina
authors.initials: L
authors.lastname: Mohd Wali Shakman
authors.affiliation: College of Nursing, Sultan Qaboos University, Oman. Electronic address: saraswathik@squ.edu.om.
authors.forename: Kannekanty
authors.initials: K
authors.lastname: Saraswathy
authors.affiliation: College of Nursing, Sultan Qaboos University, Oman. Electronic address: judie@squ.edu.om.
authors.forename: Judie
authors.initials: J
authors.lastname: Arulappan
mesh_terms: D000328:Adult; D002648:Child; D002668:Child Rearing / Q000523:psychology*; D005195:Family Relations; D005260:Female; D005500:Follow-Up Studies; D006306:Health Surveys; D006801:Humans; D008297:Male; D008603:Mental Health; D008659:Metabolic Diseases / Q000523:psychology*; D008875:Middle Aged; D016487:Parenting / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D011379:Prognosis; D011788:Quality of Life; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Child with metabolic disease; Health related quality of life; Parenting