Being concerned: Caregiving for Taiwanese mothers of a child with cerebral palsy

Abstract

Aims and objectives. This article explores the Chinese social context and provides insight into Taiwanese mothers’ challenging experiences when a disabled child is born into their families. Background. International research indicates that barriers to maternal caregiving for a disabled child revolve around challenging relationships. Giving birth to a disabled child creates a huge challenge for mothers in Chinese society. Design. Data were collected using in-depth interviews and journaling methods. A hermeneutic phenomenological approach, informed by the philosophical world views of Heidegger and Gadamer, provided theoretical guidance in revealing and interpreting mothers’ experiences. Method. Interviews were carried out with a purposeful sample of 15 mothers who were primary caregivers for a child aged between 0–18 years who was diagnosed with cerebral palsy and used Mandarin or Taiwanese as their primary language. Results. Shared meanings revealed four modes of being concerned: (1) experiencing burden as a sole primary caregiver; (2) managing the challenges by balancing demands; (3) being marginalised by others; and (4) encountering limited or no professional support. Conclusions. Taiwanese mothers face the strain of managing barriers to caregiving in contexts in which their children are not supported or acknowledged as being important contributors to family and Chinese society at large. This study highlights how the family can be important to caregiving mothers in traditional Chinese family life. Poor support and dynamics will emerge when family members regard disability as a loss of face or a stigma. Relevance to clinical practice. By learning from Taiwanese mothers who accommodate barriers to caregiving on a daily basis, nurses can seize the impetus to explore ways of reconceptualising nursing practice with families and people with disabilities. The aim is to explore ways that will ultimately align intentions and caring processes and foster coping and positive reward in caring, thereby creating a context that is stress reducing and therapeutic.

Key words: cerebral palsy, family caregiving, mother, nurses, nursing, phenomenology, Taiwan