Ten studies were included in the review: six qualitative studies (151 participants) and four quantitative studies (226 participants). Study quality was reported to be variable. Limitations included: low survey response rate; lack of clarity, variation or limited numbers in terms of the study sample; and measurement instrument not validated (full quality results were not reported).
Caregiving experiences of having a child with a tracheostomy (four qualitative studies; three quantitative studies): A consistent theme was the perceived domination of assumed clinical responsibility and parents subsequently feeling unable to distinguish their role as a parent or a nurse. Other studies showed mixed results. Some noted increased pressure and stress associated with these clinical responsibilities; others demonstrated coping strategies to help maintain normality. Mixed results were found in terms of building confidence and acceptance in relation to care-giving over time.
Social experiences related to having a child with a tracheostomy (three qualitative studies; four quantitative studies): Care-giving was associated with social isolation that arose from fears of leaving the home and the social stigma of having a child with a tracheostomy. Broken marriage was a consequence of care-giving in two studies. Reducing social isolation was an integral part of wanting to improve quality of life for the child. Quantitative studies reported significant detrimental impact of care-giving on parents' quality of life.
Experiences of service organisation and delivery of care (six qualitative studies; two quantitative studies): The importance of having parents' expert role valued by health professionals and in developing trusting and equal relationships between the two parties was noted. Parents had a central role in delivery of care packages and expressed the importance of shared written information about the child. Several studies reported concerns about supplies, delays in discharge planning, provision of respite care, unskilled carers and poorly defined roles and responsibilities. The need for support was echoed across many studies and in particular having an accessible and familiar professional contact.