Cerebral palsy: experiences of mothers after learning their child’s diagnosis

Abstract

Aim. This study is a report of a study describing mothers' experience of learning that their child has been diagnosed with cerebral palsy. Background. Learning a child's diagnosis of disability is a crisis for parents. Their reactions include shock, refusal to accept the diagnosis, anger, fear, and uncertainty about the extent of disability and associated impairment. Knowledge about parental reactions is based on studies conducted in western countries, many of which do not apply to Taiwan where Confucianism strongly influences cultural perspectives of family and disability. Method. In this phenomenological study, data were collected in 2005-2006 using in-depth interviews and journaling with 15 Taiwanese mothers of children diagnosed with cerebral palsy. Hermeneutic analysis was undertaken of interview transcripts and journal notes. Findings. Four shared meanings associated with learning of their child's diagnosis were revealed: feeling out of control and powerless, mistrusting healthcare professionals, release and confirmation, and feeling blamed for not following traditional practices. Mothers experienced a loss of their 'ideal' child when their child was diagnosed with cerebral palsy. Expectations of 'normal' motherhood and fulfilling societal anticipation of giving birth to a healthy child were lost. Maintaining their husband's family honour and prosperity, as well as saving face in their community were threatened. Mixed feelings of disbelief, rejection, self-blame and sadness were compounded by uncertainty about their child's future. Conclusion. To promote better understanding of the child's condition, emotional support and information should be provided to the mother and family, both when informing them of the diagnosis and in the period after diagnosis.