Abstract
There is an increasing number of children with complex care needs, however, there is limited evidence of the experience of families during the process of transitioning to becoming their child's primary care giver. The aim of this study was to explore parents' perspectives of the transition to home of a child with complex respiratory health care needs. Parents of children with a tracheostomy with or without other methods of respiratory assistance, who had transitioned to home from a large children's hospital in the last 5 years, were invited to participate in the interviews. Voice-centred relational method of qualitative analysis was used to analyse parent responses. Four key themes emerged from the interviews including "stepping stones: negotiating the move to home", "fighting and frustration", "questioning competence" and "coping into the future". There is a need for clear and equitable assessments and shared policies and protocols for the discharge of children with complex care needs. Direction and support are required at the level of health service policy and planning to redress these problems. This study provides evidence that the transition of children with complex care needs from hospital to home is a challenging dynamic in need of further improvement and greater negotiation between the parent and health service provider. There are tangible issues that could be addressed including the introduction of a standardised approach to assessment of the needs of the child and family in preparation for discharge and for clear timelines and criteria for reassessment of needs once at home.
Highlights
There is an increasing number of children with complex care needs, there is limited evidence of the experience of families during the process of transitioning to becoming their child’s primary care giver
It is acknowledged that the term transition is used in the context of children transferring to adult care services; it is increasingly being used internationally to reflect the discharge to home of children with complex health care needs from acute care services; most commonly from transitional care units within these facilities
The evidence suggests that there was great variation in the length of time the children spent in hospital prior to discharge (3–22 months) (Table 1) as well as a difference in hours of care provided through individual homecare packages
Summary
There is an increasing number of children with complex care needs, there is limited evidence of the experience of families during the process of transitioning to becoming their child’s primary care giver. While there are many definitions of complex care, it is generally accepted that children with a medical complexity have substantial health care needs as a result of one or more chronic conditions, with functional limitations that often require technology assistance and need to access multiple health support services [3] Much research in this area has identified specific physical and emotional needs of parents caring for a child with complex health needs in the home [4,5,6], while a recent integrative literature review identified critical factors for a successful transition to home [7]. It is acknowledged that the term transition is used in the context of children transferring to adult care services; it is increasingly being used internationally to reflect the discharge to home of children with complex health care needs from acute care services; most commonly from transitional care units within these facilities
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