"Nope, I'm outta here!": Understanding how children with life-shortening and life-threatening illnesses experience clinical environments.

BACKGROUND

Children with serious illness, including life-shortening and life-threatening illnesses, live and grow while dealing with the possibility of health decline and death. Pediatric palliative care teams support children with serious illness and their families but must do so with a paucity of research to help them understand the experiences of the children in their care.

AIMS: The purpose of this study was to understand the experiences of children with serious life-shortening or life-threatening illness; one of the findings from this study, children's experiences of clinical environments, is discussed in detail.

METHODS

This study was conducted in the context of a PhD thesis, using arts-based hermeneutic research. Six participants were interviewed about their experiences of having a serious illness. Data analysis included the rigorous interpretation of their interview transcripts and artwork that was created during the interviews.

RESULTS

One of the findings of this study included children's experiences of clinical environments. The participants experienced the hospital and the things inside it as "hostile." Hospice environments were experienced as home-like and as a change of scenery or a place where life was on hold. Nurses and other professionals were experienced as ameliorating the negative experiences of hostile clinical environments and invasive procedures, and as role models to their patients.

CONCLUSIONS

Children with serious illness may experience their environments and procedures as hostile. Nurses can mitigate children's negative experiences of their care. Access to pediatric palliative home care and hospice facilities may decrease children's negative experiences of clinical environments during end of life.