46 Mother' Experiences of Caring for Children with Complex Needs - Challenges Faced in the Outside World

Abstract

Background: Children with complex needs, however defined, are increasingly being cared for at home.

Aim: The aim of the study was to explore the experiences of mothers caring for children who had rare, congenital and genetic disorders at home in Ireland.

Heideggerian and Gadamerian approaches were used and data were collected seventeen mothers. Multiple interviews and diary recordings were analysed using an adaptation of a number of models.

Results: Mothers provide care in three worlds; an inside world of the home, an outside world and a going-between world. Mothers were involved in care-giving in an unstable world where support was limited. Care-giving involves four aspects- normal mothering, technical care-giving, pre-emptive care-giving and individualised care-giving. Paperwork and administration, constant observation, instability and communication added significantly to the complexity of caring. Mothers' were ‘knowing’ of their child's needs. Others' ‘unknowingness’ impacted significantly on the mothers throughout the child's illness trajectory in all worlds. Caring involved a ‘no choice’ situation. Providing care in the outside world away from the home raises specific challenges for mothers who are required to deliver care in the presence of others who do not fully understand their situation.

Conclusions and recommendations: Service providers need to understand the challenges faced by mothers when they deliver care to their children at home and understand that caring at home involves more than the provison of care within home.

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