The Experience of Being a Taiwanese Mother of a Child with Cerebral Palsy

Abstract

Cerebral palsy (CP) is the most common cause of physical disability in children. Disabilities are associated with walking, sitting and hand function. The nature and severity of impairments varies but in all cases the demands placed upon caregivers is significant. Many care-giving studies have examined the effects of having a child with CP in rational and functional aspects. Few studies have aimed to gain a better understanding of the meaning of the care-giving experience and there exists no literature that undertakes a hermeneutic phenomenological approach to explore the Taiwanese mothers’ lived experience of raising children with CP. This study adopts a hermeneutic phenomenological approach informed by the philosophical worldviews of Heidegger and Gadamer. Heidegger’s philosophy provided me with guidance to explore the meaning of experience attributed to everyday practical care-giving for a mother of a child with CP in Taiwan. While Gadamer guided me to understand and interpret the meaning of stories mothers shared, through the fusion of horizons. Meaning was disclosed through an exploration of the life-world of 15 mothers, voluntary participants recruited from a medical centre located in the metropolitan area of Middle Taiwan. Through stories of everyday care-giving the participating mothers revealed the importance of their family background which influenced how and what they experienced, the importance of being supported by family, and the significant influence of a traditional Chinese culture. Some participating mothers shared their experiences of anticipated pleasure of becoming a parent and how this was destroyed. All participating mothers expressed their concern as they realised that something was wrong with their children. They described their experiences of learning the diagnosis of CP and feeling out of control and powerless. Many mothers experienced a sense of disbelief, a profound sense of loss for their anticipated 'ideal' children, feelings of no hope, and a gradual learning to accept their children and through this a feeling of empowerment to search for new possibilities for the future...