title: A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study.
abstract: BACKGROUND
  Parents caring for a child with Cystic Fibrosis (CF) are at high risk for psychological distress and have limited access to psychological care. Therefore, a web-based psychological support program for severely distressed parents of children with CF (WEP-CARE) was developed and evaluated for its feasibility and efficacy.
  
  
  METHODS
  A clinical expert panel developed WEP-CARE based on principles of cognitive-behavioral therapy. This web-based writing therapy comprises nine sessions, tailored for the specific needs of caregivers. The pilot study was conducted as a single-group intervention with pre-post-follow-up design. Out of 31 participants, 23 parents completed the intervention (21 female; mean age 37 years; SD = 6.2 years, range 25 - 48 years). Psychological symptoms and quality of life were assessed online by self-report measures at pre- and post-treatment and were followed up three months later.
  
  
  RESULTS
  On average, the caregivers' symptoms of anxiety decreased statistically significant and clinical relevant about five points from an elevated (M = 11.4; SD =2.6) to a normal level (M = 6.7; SD = 2.6; p < .001) between pre and post treatment. Fear of disease progression (p < .001) and symptoms of depression (p = .02) significantly decreased as well. Quality of life significantly improved (p = .01). The effects were maintained at the 3-months follow-up assessment.
  
  
  CONCLUSIONS
  WEP-CARE is feasible and promising regarding its efficacy to improve parental mental health and quality of life.
authors: Department of Child and Adolescent Psychiatry/Psychotherapy, University of Ulm, Medical Centre, Steinhoevelstr. 1, Ulm, 89075, Germany. astrid.fidika@uniklinik-ulm.de.
authors: Astrid
authors: A
authors: Fidika
authors: Department of Child and Adolescent Psychiatry/Psychotherapy, University of Ulm, Medical Centre, Steinhoevelstr. 1, Ulm, 89075, Germany. marion.herle@uniklinik-ulm.de.
authors: Marion
authors: M
authors: Herle
authors: Department of Paediatric Pulmonology/Immunology, Charité, Humboldt University, Berlin, Germany. Christine.Lehmann@charite.de.
authors: Christine
authors: C
authors: Lehmann
authors: Department of Paediatric Pulmonology/Immunology, Charité, Humboldt University, Berlin, Germany. christa.weiss@charite.de.
authors: Christa
authors: C
authors: Weiss
authors: Department of Clinical Psychology and Psychotherapy, Freie University Berlin, Berlin, Germany. christine.knaevelsrud@fu-berlin.de.
authors: Christine
authors: C
authors: Knaevelsrud
authors: Department of Child and Adolescent Psychiatry/Psychotherapy, University of Ulm, Medical Centre, Steinhoevelstr. 1, Ulm, 89075, Germany. lutz.goldbeck@uniklinik-ulm.de.
authors: Lutz
authors: L
authors: Goldbeck
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001007:Anxiety / Q000517:prevention & control; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003376:Counseling / Q000379:methods*; D003550:Cystic Fibrosis / Q000628:therapy*; D003863:Depression / Q000517:prevention & control; D005260:Female; D005858:Germany; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D020407:Internet; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010865:Pilot Projects; D013315:Stress, Psychological / Q000517:prevention & control*
references: J Consult Clin Psychol. 1991 Feb;59(1):12-9
references: 2002127
references: Cochrane Database Syst Rev. 2014;6:CD003148
references: 24941199
references: J Psychosom Res. 2005 Jun;58(6):505-11
references: 16125517
references: Psychol Med. 2007 Mar;37(3):319-28
references: 17112400
references: Eur Respir J. 2007 Mar;29(3):522-6
references: 17182652
references: BMC Psychiatry. 2007;7:13
references: 17442125
references: Pediatrics. 2008 Nov;122(5):e1030-8
references: 18852185
references: Behav Res Ther. 2009 Mar;47(3):175-80
references: 19230862
references: Klin Padiatr. 2009 Jul-Aug;221(4):241-6
references: 19629902
references: Pediatr Pulmonol. 2010 Aug;45(8):756-63
references: 20597082
references: J Pediatr Psychol. 2010 Sep;35(8):814-22
references: 20097908
references: Br J Clin Psychol. 2010 Nov;49(Pt 4):455-71
references: 19799804
references: PLoS One. 2010;5(10):e13196
references: 20967242
references: Pediatr Ann. 2010 Dec;39(12):793-8
references: 21162488
references: Klin Padiatr. 2011 Mar;223(2):79-84
references: 20830660
references: Pediatr Pulmonol. 2011 Jul;46(7):672-82
references: 21384564
references: J Fam Nurs. 2011 Aug;17(3):357-79
references: 21813815
references: Behav Med. 2011 Jul;37(3):95-104
references: 21895427
references: Patient Educ Couns. 2011 Nov;85(2):140-2
references: 21030194
references: Int J Med Inform. 2011 Nov;80(11):765-74
references: 21958551
references: J Cyst Fibros. 2011 Dec;10(6):435-42
references: 21782529
references: Cochrane Database Syst Rev. 2012;8:CD009660
references: 22895990
references: Health Psychol. 2012 Nov;31(6):767-76
references: 22746261
references: Expert Rev Pharmacoecon Outcomes Res. 2012 Dec;12(6):745-64
references: 23252357
references: J Pediatr Psychol. 2013 Sep;38(8):809-28
references: 23843630
references: Diabetes Care. 2013 Sep;36(9):2475-82
references: 23579179
references: Clin Respir J. 2013 Oct;7(4):338-41
references: 23280057
references: J Pediatr Psychol. 2013 Nov;38(10):1101-11
references: 23912164
references: J Cyst Fibros. 2014 May;13 Suppl 1:S3-22
references: 24856776
references: J Cyst Fibros. 2005 Mar;4(1):7-26
references: 15752677