This PeP, the first of its kind in Malaysia, has significantly increased levels of knowledge among parents of seriously ill children which may point towards the potential for these services to increase coping in Malaysian PoCwC.
Deletion of the SMN1 exon 7 is a major cause of SMA in Malaysia, and NAIP gene deletions are not rare in type I SMA in Malaysia. The lower percentage of the SMN1 gene deletion may be due to the possibility that the present study included some patients without SMN1 gene abnormality and/or some patients with non-deletion type mutations in the SMN1 gene.
Abstract-Introduction: Diagnosis of cancer in children poses a challenging situation for parents to cope with. Method: Seventy-nine (N = 79) parents whose children are receiving treatment for cancer in Hospital Universiti Sains Malaysia participated in this cross-sectional descriptive study. They completed a set questionnaire measuring their level of anxiety and stress, knowledge about cancer, and amount of activities they perform with or for the child to enhance the child's coping abilities, in addition to children's psychological problems. Socio-demographic information was obtained. Results: Parents with higher cancer knowledge reported reduced stress (p<0.01) and anxiety (p<0.05). The higher the income (p<0.05) and education (p<0.01), the higher cancer knowledge. Parental stress was negatively correlated with income (p<0.05) and education (p<0.01), indicating that the better educated and higher the salary, less stress symptoms. Highly educated parents engaged in more activities with their children (p<0.05). Parental anxiety was correlated significantly with children's current treatment including chemotherapy procedure (p<0.01), 'In-patient' Vs 'Outpatient' (p<0.01), and children's condition (p<0.01). Parents of hospitalized children who underwent chemotherapy were significantly more anxious than their counterparts. Parents who perceived their children's current condition as 'very good', reported reduced anxiety, compared to those who reported their child's condition as 'ok'. The more psychological problems the children had, the higher parental anxiety (p<0.05) and stress symptoms (p<0.01). Discussion: Some groups of parents reported more psychological difficulties compared to others. Ongoing psychological assessment and intervention may reduce parental stress by increasing coping and reducing children psychological problems.
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