Through Mothers' Eyes: The Lived Experience of Caring for a Child who has Undergone and Recovered from a Liver Transplantation
Authors:   , Murphy Sandra Elisabeth Ebbeling 
Published: November 2021

<p>Paediatric liver transplantation is a complicated and costly procedure. It also has the potential to be life-changing for the child and family.  Paediatric liver transplantation commenced in New Zealand in July 2001. Approximately six to eight New Zealand children require liver transplantation annually. International survival rates of children receiving a liver transplant have increased in association with effective drug therapy and technological advances, though the children experience varying levels of wellbeing. Children are discharged relatively quickly following their major surgery. Upon discharge the child is assessed to be well, exhibits satisfactory liver function and the social situation at home is assessed to be conducive to their ongoing care. On discharge the child remains under the spotlight of health care workers. Monitoring reduces as the child's condition improves. The child is only seen by health professionals in outpatient appointments or if admitted back to the ward. The close engagement in the hospital setting is untangled. The child, mother and family regain their autonomy. The long term implications of caring for a child recovering from a life-threatening condition to relative normalcy are largely unobserved. Mothers, whose children had undergone a liver transplant more than one year ago at time of interview and whose children were outpatients of Starship Children's Hospital, were invited to participate in this research. Mothers are generally the most common primary caregiver of children. In caring for their transplanted child following recovery, mothers are relied upon to provide information about their child's wellbeing and functioning. A Heideggerian hermeneutic phenomenological approach, informed by the work of van Manen (1990) was used. Three mothers of children who had received a liver transplant were interviewed to reveal the meanings of the phenomenon - what is the meaning of lived experience of mothers in caring for their child who has undergone and recovered following liver transplantation? Little previous study regarding mothers' lived experience of caring for their child, who had recovered from a liver transplant, was found in the literature. The emerging themes were punctuated with stress being a consistent feature. Utilising Ruddick's (1983) concepts of maternal thinking, the emerging themes were merged within the three interests governing maternal practice; preservation, growth and acceptability. The absolute capacity for attentive love draws the experience together. An essential theme identified out of the analysis was the concept of survival relating to the unique features of liver transplantation and the consequences of liver rejection and failure. The findings contribute to the understanding of the phenomenon, emphasising the need for good support systems for families of children who have undergone transplantation; assistance in the establishment of maternal coping strategies and regular feedback on the children's progress  acknowledging the role and care provided by mothers. Health professionals might develop new understandings of the dynamic and evolving issues arising out of the provision of care by mothers. There may be a greater empathy and understanding of the experiences of mothers in their roles of caring. The findings provide glimpses of the life of children who have  undergone and recovered from a liver transplant.</p>