title: An analysis of parental roles during haematopoietic stem cell transplantation of their offspring: a qualitative and participant observational study.
abstract: OBJECTIVE
  The aim of this study was to investigate the parents' experiences and reflections on their parental role while taking care of their child.
  
  
  BACKGROUND
  Parents of children undergoing treatment with allogeneic haematopoetic stem cell transplantation for life threatening diseases in protective isolation, experience distress related to the child's care. Parents struggle to cope with the stress related to the child's disease, treatment and survival possibilities.
  
  
  METHODS
  During the period 2007-2009, eight participant studies and 16 in-depth interviews were performed and analysed using a theoretical ideal type construction and an interactionistic approach.
  
  
  RESULTS
  Three ideal types of approaches were identified (1) expertise-mindedness, (2) dialogue-mindedness and (3) the approach of the socially challenged parents. Expertise-minded parents base their rationality for care and interactions on medical knowledge. It is important for dialogue-minded parents that emotions are included in the rationality for care. Being able to manage these two approaches requires emotional work in the form of both surface- and deep acting from the parents. Socially challenged parents fail to adapt to either of the two approaches since they often fail to manage the required emotional work.
  
  
  CONCLUSIONS
  The three described ideal types give a new perspective on the complex interactions that occur between parents, child and staff during treatment with haematopoetic stem cell transplantation. Understanding the rationality behind the different approaches adopted by parents may assist medical staff to understand the parents' rationality for care of their child and to identify socially challenged parents who need help in managing the care of their child.
authors.affiliation: Finsen Centret, Copenhagen University Hospital, Denmark. rh07604@rh.regionh.dk
authors.forename: Hanne Baekgaard
authors.initials: HB
authors.lastname: Larsen
authors.forename: Carsten
authors.initials: C
authors.lastname: Heilmann
authors.forename: Christoffer
authors.initials: C
authors.lastname: Johansen
authors.forename: Lis
authors.initials: L
authors.lastname: Adamsen
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D002648:Child; D002673:Child, Hospitalized / Q000523:psychology*; D002675:Child, Preschool; D004644:Emotions; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects / Q000451:nursing* / Q000523:psychology; D006801:Humans; D007223:Infant; D008297:Male; D015404:Nursing Methodology Research; D010287:Parent-Child Relations; D016487:Parenting; D010290:Parents / Q000523:psychology*; D010356:Patient Isolation / Q000523:psychology; D011368:Professional-Family Relations; D036301:Qualitative Research; D012380:Role; D013315:Stress, Psychological / Q000523:psychology