title: Parents' views of their child's end-of-life care: subanalysis of primary care involvement.
abstract: BACKGROUND
  The medical literature encourages primary care pediatricians (PCPs) to play a role in the care of patients who are dying. Actual involvement has not been investigated.
  
  
  OBJECTIVE
  Our objective was to explore current involvement of PCPs when their patients face the end of life and bereaved parents' attitudes toward it.
  
  
  METHODS
  Individual, in-depth, semi-structured interviews were conducted using a focused ethnographic technique. Qualitative analysis was performed on the interviews.
  
  
  METHODS
  Most (14/16) interviews were conducted in the family's home, involving parents of Massachusetts children who died aged 1 month to 11 years during 2005.
  
  
  METHODS
  Themes identified through thematic analysis of interview transcripts were utilized.
  
  
  RESULTS
  Interviews were thematically analyzed, revealing four categories of themes: 1) the role of individual PCP in decision making and care at end of life; 2) general attitudes about the care provided by the PCP; 3) the impact of practice infrastructure on the PCP's care; and 4) bereavement involvement. From the interviews we hypothesize that PCPs play a supportive and appreciated role while having limited involvement in decision making and care; an involved PCP acting with knowledge of a family may in some cases provide profound guidance, but that kind of involvement is not typical; and although there is an articulated role for the PCP with the parents' and siblings' bereavement, it is not routinely exercised.
  
  
  CONCLUSIONS
  The interviews suggest limited involvement by PCPs in care at the end of life and subsequent bereavement. Parents overall seem to accept this role. Further research is needed to examine these observations from the perspective of PCPs.
authors.affiliation: Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Pediatric Advanced Care Team, Children's Hospital Boston, Massachusetts 02215, USA. richard_goldstein@dfci.harvard.edu
authors.forename: Richard
authors.initials: R
authors.lastname: Goldstein
authors.forename: Kathleen P
authors.initials: KP
authors.lastname: Rimer
mesh_terms: D001293:Attitude to Death; D001601:Bereavement; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007407:Interviews as Topic; D008297:Male; D008404:Massachusetts; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011320:Primary Health Care; D013727:Terminal Care