title: Ethical issues relating to the inclusion of relatives as clients in the post-stroke rehabilitation process as perceived by patients, relatives and health professionals.
abstract: OBJECTIVE
  To document the ethical issues regarding the systematic inclusion of relatives as clients in the post-stroke rehabilitation process.
  
  
  METHODS
  A two-phase qualitative design consisting of in-depth interviews with relatives and stroke-clients (Phase 1) and three focus groups with relatives, stroke-clients and health professionals (Phase 2). Data was audio recorded. Transcribed interviews and focus groups content were rigorously analyzed by two team members.
  
  
  RESULTS
  The interview sample was composed of 25 relatives and of 16 individuals with a first stroke whereas the three focus group sample size varied from 5 to 7 participants. Four main themes emerged: (1) overemphasis of caregiving role with an unclear legitimacy of relative to also be a client; (2) communication as a key issue to foster respect and a family-centered approach; (3) availability and attitudes of health professionals as a facilitator or a barrier to a family-centered approach; and (4) constant presence of relatives as a protective factor or creating a perverse effect.
  
  
  CONCLUSIONS
  The needs of relatives are well known. The next step is to legitimize their right to receive services and to acknowledge the combined clinical and ethical value of including them post-stroke. Interdisciplinary health care approaches and communication skills should be addressed.
authors.affiliation: Montreal University, Quebec, Canada; Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Quebec, Canada. Electronic address: annie.rochette@umontreal.ca.
authors.forename: Annie
authors.initials: A
authors.lastname: Rochette
authors.affiliation: Montreal University, Quebec, Canada; McGill University, Montreal, Canada; Montreal Clinical Research Institute (IRCM), Canada.
authors.forename: Eric
authors.initials: E
authors.lastname: Racine
authors.affiliation: Montreal University, Quebec, Canada; Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Quebec, Canada.
authors.forename: Helene
authors.initials: H
authors.lastname: Lefebvre
authors.affiliation: Montreal Gingras-Lindsay Rehabilitation Institute, Canada.
authors.forename: Jocelyne
authors.initials: J
authors.lastname: Lacombe
authors.affiliation: Laval Social Services and Health Centre, Canada.
authors.forename: Josee
authors.initials: J
authors.lastname: Bastien
authors.affiliation: Montreal University, Quebec, Canada.
authors.forename: Myriam
authors.initials: M
authors.lastname: Tellier
mesh_terms: D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D002170:Canada; D017028:Caregivers / Q000941:ethics* / Q000523:psychology; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology; D010465:Perception; D011368:Professional-Family Relations / Q000941:ethics*; D011369:Professional-Patient Relations; D036301:Qualitative Research; D012046:Rehabilitation / Q000941:ethics*; D012944:Social Support; D000071939:Stroke Rehabilitation; D014505:Urban Population
keywords: Cerebrovascular disease/stroke; Ethics and policy; Qualitative study; Rehabilitation; Relatives; Social Environment