Kepelbagaian Cabaran Terhadap Kanak-Kanak Yang Menghidap Penyakit Kronik Cystic Fibrosis: Sebuah Kajian Kes

Abstract

Cystic fibrosis is one of the rare diseases caused by genetic problems, and it requires lifetime treatment. Cystic fibrosis patients experience various treatment challenges and complications that are at risk to their life development. It is also a challenge for their caregivers, mainly a nuclear family that has never experienced a family member suffering from a chronic illness at a young age. This study focuses on the challenges experienced by children with cystic fibrosis and their families through field case management by medical social workers at a tertiary health centre in Kuala Lumpur. The study found that children suffering from cystic fibrosis experience physical, mental, and social challenges. At the same time, their families face challenges in adapting to the situation, are burdened with high expenses of ongoing care, and are exposed to the risk of domestic violence and long-term dependence on public resources. The study concludes that chronic diseases among children are a challenge to the long-term development of the family; thus, an intervention based on patient and family-centred care practice is imperative.