title: Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy.
abstract: OBJECTIVE
  To describe subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (DMD) and to identify factors associated with the level of subjective burden.
  
  
  METHODS
  In a cross-sectional study in 80 parents of 57 adult, severely disabled DMD patients' level of subjective caregiver burden was measured with the Caregiver Strain Index (CSI) and the Self Rated Burden Scale. A visual analogue scale was used to measure happiness. The expanded CSI version, the CarerQoL and open questions were used to analyse caregiving in more depth. In uni and multivariate analyses, associations of objective care characteristics, patient characteristics and caregiver characteristics with burden were explored.
  
  
  RESULTS
  Parents indicated substantial burden, but valued giving care as being important and rewarding. Subjective burden was associated with received support, tracheotomy, active coping by the patient and anxiety in patient and parents, together explaining 34%-36% of variance. Living situation was not associated with experienced burden.
  
  
  CONCLUSIONS
  Caring for an adult son with DMD is burdensome, but rewarding. Subjective caregiver burden of parents may be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping by the patient from childhood.
authors.affiliation: Department of Rehabilitation Medicine and Physical Therapy, ErasmusMC, University Medical Centre Rotterdam, Rotterdam, the Netherlands. r.pangalila@erasmusmc.nl
authors.forename: Robert F
authors.initials: RF
authors.lastname: Pangalila
authors.forename: Geertrudis A M
authors.initials: GA
authors.lastname: van den Bos
authors.forename: Henk J
authors.initials: HJ
authors.lastname: Stam
authors.forename: N Job A
authors.initials: NJ
authors.lastname: van Exel
authors.forename: Werner B F
authors.initials: WB
authors.lastname: Brouwer
authors.forename: Marij E
authors.initials: ME
authors.lastname: Roebroeck
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020388:Muscular Dystrophy, Duchenne / Q000451:nursing*; D009426:Netherlands; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D012720:Severity of Illness Index; D012944:Social Support; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000523:psychology; D011795:Surveys and Questionnaires