Until the last breath: exploring the concept of hope for parents and health care professionals during a child's serious illness.
OBJECTIVE
To investigate the concept of hope for families and pediatric health care professionals during a child's serious illness.


METHODS
Eight focus groups.


METHODS
Academic pediatric medical center.


METHODS
Bereaved parents, pediatricians, pediatric residents, and nurses (N = 39). Intervention Participants were asked standardized questions related to their definition of hope, its role in medical decisions, and the benefits and detriments of hope in focus group sessions.


METHODS
We identified attributes of participants' concepts of hope using qualitative analysis of audio-taped sessions.


RESULTS
While all participants identified common elements in their definition of hope, parents identified their role as bearers of hope; it was a cornerstone of decision making. Health care professionals tended to view hope as related to a positive outcome. Some physicians reported difficulty in maintaining hope in the face of prognostic data; others acknowledged the importance of the family's hope. Nurses identified particular challenges around parents' decisions to continue treatment when it prolonged the child's suffering. All participants noted the changing nature of hope and its implications for care.


CONCLUSIONS
The tension between maintaining hope and accepting the reality of the prognosis may lessen when acknowledging that parents see their role as bearers of hope. Supporting families around the changing nature of hope may allow health care professionals to partner with parents while maintaining honest communication.
Reder
Elizabeth A Keene
EA
St. Mary's Regional Medical Center, 97 Campus Avenue, Lewiston, ME 04240, USA. ekeene@stmarysmaine.com
Serwint
Janet R
JR
D000223:Adaptation, Psychological; D001291:Attitude of Health Personnel; D001293:Attitude to Death; D001601:Bereavement; D002648:Child; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D029181:Spirituality; D011795:Surveys and Questionnaires; D019452:Terminally Ill