Parents' experiences and views of caring for a child with a tracheostomy: a literature review

Objectives: To review the published/reported experiences and views of parents' whose child has had a tracheostomy. To date, no review has focused specifically on parents' experiences and views of having a child with a tracheostomy.

Methods: MEDLINE, CINAHL, PsycINFO and Embase were systematically searched from 1990 to 2012 and a review of reference lists was conducted. The review draws on articles where parents' views of caring for their child's tracheostomy were either the sole focus of the research or where parental views of caring for their child's tracheostomy have been sought as a subsidiary aim. Studies relating to the aims of the review were examined using quality appraisal tools and in line with criteria for inclusion of studies. Studies were excluded if findings were about adults, studies that only focused on children's or sibling's views were not based on empirical work (e.g. literature reviews or expert commentary) or were not published in the English language. Findings were summarised under thematic headings.

Results: The systematic database search identified 442 citations of which 10 were eligible for inclusion in the review. Of those 10 studies six were quantitative and four qualitative. Only one paper published qualitative data specifically on parents' experiences about their tracheotomised child. The three main themes identified were parents' experiences of caregiving, their social experiences and experiences of service delivery of having a child with a tracheostomy. Although parents encountered emotional and social challenges, some positive responses to these challenges were reported.

Conclusion: This review identifies a lack of qualitative research on parents' views of having a child with a tracheostomy. Issues surrounding parental management of tracheostomy require further investigation. This review has identified the need to elicit parents' longitudinal experiences of having a child with a tracheostomy.