title: Multiple sclerosis (MS) in the life cycle of the family: An interpretative phenomenological analysis of the perspective of persons with recently diagnosed MS.
abstract: BACKGROUND
  In this study the authors explored how people with recently diagnosed multiple sclerosis (MS) experience their disease within their family lives. Ten people in various stages of the cycle of family life (leaving home, finding a partner, raising children, parenting adolescents, launching children) who had been diagnosed with MS were interviewed in half-structured conversational interviews.
  
  
  METHODS
  Transcriptions were analyzed following a phenomenological approach.
  
  
  RESULTS
  Five themes were found: (a) dwindling capacity for housekeeping and childcare (b) struggling to ask for or to accept help, (c) countering awkward attitudes toward my illness, (d) suspecting family members of concealing their, and (e) watching family members wrestle with your illness.
  
  
  CONCLUSIONS
  The participants described that their illness affected their ability to care for their family and home as they used to. Only a couple of studies have addressed the first person perspective of patients on family and MS. The study expands on these studies by exploring not previously examined perspectives on leaving home, finding a partner, parenting adolescents, and launching children. The findings on family and MS, approached as elements of the first person perspective of MS patients, may guide future research. Given the pivotal role of worries on family in patient experience of MS, we argue that acknowledgment of family as a constitutive element of the patient perspective should be integrated in regular MS care. The authors suggest that the clinical handling of MS as a family issue needs to be done thoughtfully and with attention to the specifics of each unique family situation. (PsycINFO Database Record
authors.affiliation: Department of Care Ethics.
authors.forename: Archie
authors.initials: A
authors.lastname: de Ceuninck van Capelle
authors.affiliation: Department of Neurology, St. Elisabeth Tweestedenziekenhuis.
authors.forename: Leo H
authors.initials: LH
authors.lastname: Visser
authors.affiliation: Department of Care Ethics.
authors.forename: Frans
authors.initials: F
authors.lastname: Vosman
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000328:Adult; D001294:Attitude to Health; D006233:Persons with Disabilities / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000523:psychology* / Q000628:therapy; D009426:Netherlands; D010465:Perception; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D013997:Time Factors