title: To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R).
abstract: BACKGROUND
  Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised (MDS-R) is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction.
  
  
  METHODS
  The procedure included linguistic translation and cultural adaptation of MDS-R's paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care.
  
  
  RESULTS
  To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens.
  
  
  CONCLUSIONS
  Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.
authors.affiliation: Department of Women's and Children's Health, Karolinska Institutet, SE-171 76, Stockholm, Sweden. margareta.afsandeberg@karolinska.se.|Children's and Women's Health, Karolinska University Hospital, SE-171 76, Stockholm, Sweden. margareta.afsandeberg@karolinska.se.
authors.forename: Margareta
authors.identifier: http://orcid.org/0000-0002-2305-8446
authors.initials: M
authors.lastname: Af Sandeberg
authors.affiliation: Department of Medicine and Health Sciences, Linköping University, SE-581 83, Linköping, Sweden.|Centre for Healthcare Development, Region Östergötland, SE-581 85, Linköping, Sweden.
authors.forename: Marika
authors.initials: M
authors.lastname: Wenemark
authors.affiliation: Department of Women's and Children's Health, Karolinska Institutet, SE-171 76, Stockholm, Sweden.|Children's and Women's Health, Karolinska University Hospital, SE-171 76, Stockholm, Sweden.
authors.forename: Cecilia
authors.initials: C
authors.lastname: Bartholdson
authors.affiliation: Department of Women's and Children's Health, Karolinska Institutet, SE-171 76, Stockholm, Sweden.
authors.forename: Kim
authors.initials: K
authors.lastname: Lützén
authors.affiliation: Department of Women's and Children's Health, Karolinska Institutet, SE-171 76, Stockholm, Sweden.|Children's and Women's Health, Karolinska University Hospital, SE-171 76, Stockholm, Sweden.
authors.forename: Pernilla
authors.initials: P
authors.lastname: Pergert
mesh_terms: D002648:Child; D016638:Critical Illness; D003469:Culture; D006282:Health Personnel / Q000941:ethics* / Q000523:psychology; D006801:Humans; D007802:Language; D009014:Morals; D009369:Neoplasms / Q000523:psychology / Q000628:therapy; D010372:Pediatrics / Q000941:ethics*; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D013548:Sweden; D014175:Translating
keywords: Cognitive interviews; Cultural adaptation; Difficult ethical situations; Healthcare professionals; Moral distress; Paediatric cancer care; Questionnaire; Respondent satisfaction; Translation procedure