Original Article
Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis
Tanja Besier PhD,
Anja Born MSc,
Gerhard Henrich PhD,
Andreas Hinz PhD,
Alexandra L. Quittner PhD,
Lutz Goldbeck PhD,
The TIDES Study Group,
Corresponding Author
Tanja Besier PhD
Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Ulm, Germany
Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Steinhoevelstr. 5, 89075 Ulm, Germany.Search for more papers by this authorAnja Born MSc
Independent Department for Medical Psychology and Medical Sociology, University of Leipzig, Leipzig, Germany
Search for more papers by this authorGerhard Henrich PhD
Department of Psychosomatic Medicine, University Hospital of the Technical University Munich, Munich, Germany
Search for more papers by this authorAndreas Hinz PhD
Independent Department for Medical Psychology and Medical Sociology, University of Leipzig, Leipzig, Germany
Search for more papers by this authorAlexandra L. Quittner PhD
Department of Psychology, University of Miami, Miami, Florida
Search for more papers by this authorLutz Goldbeck PhD
Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Ulm, Germany
Search for more papers by this authorThe TIDES Study Group
Search for more papers by this authorTanja Besier PhD,
Anja Born MSc,
Gerhard Henrich PhD,
Andreas Hinz PhD,
Alexandra L. Quittner PhD,
Lutz Goldbeck PhD,
The TIDES Study Group,
Corresponding Author
Tanja Besier PhD
Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Ulm, Germany
Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Steinhoevelstr. 5, 89075 Ulm, Germany.Search for more papers by this authorAnja Born MSc
Independent Department for Medical Psychology and Medical Sociology, University of Leipzig, Leipzig, Germany
Search for more papers by this authorGerhard Henrich PhD
Department of Psychosomatic Medicine, University Hospital of the Technical University Munich, Munich, Germany
Search for more papers by this authorAndreas Hinz PhD
Independent Department for Medical Psychology and Medical Sociology, University of Leipzig, Leipzig, Germany
Search for more papers by this authorAlexandra L. Quittner PhD
Department of Psychology, University of Miami, Miami, Florida
Search for more papers by this authorLutz Goldbeck PhD
Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Ulm, Germany
Search for more papers by this authorThe TIDES Study Group
Search for more papers by this authorAbstract
Objective
To assess the prevalence of symptoms of anxiety and depression and the extent of life satisfaction in parents caring for children with cystic fibrosis (CF) in Germany.
Methods
The study included 650 caregivers of 564 children with CF ages 0–17, who completed the Hospital Anxiety Depression Scale (HADS), the Center for Epidemiologic Studies Depression Scale (CES-D) and the Questions on Life Satisfaction (FLZM).
Results
More than one-third (37.2%) of parents showed elevated levels of anxious symptoms, compared to 18.9% of a population sample (P ≤ 0.001) and significantly more parents reported elevated levels of depressive symptoms compared to a community sample (28% vs. 21%, P = 0.01). Higher levels of anxious and depressive symptoms were associated with lower life satisfaction (P < 0.001).
Conclusions
High levels of anxious and depressive symptoms among parents of children with CF suggested that annual symptom screening is warranted. This will facilitate identification of those at risk and provide referrals and intervention for those who are in need of it. Pediatr. Pulmonol. 2011; 46:672–682. © 2011 Wiley-Liss, Inc.
REFERENCES
- 1Barlow JH, Ellard DR. The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base. Child Care Health Dev 2006; 32: 19–31.
- 2Kazak AE, Cant MC, Jensen MM, McSherry M, Rourke MT, Hwang WT, Alderfer MA, Beele D, Simms S, Lange BJ. Identifying psychosocial risk indicative of subsequent resource utilization in families of newly diagnosed pediatric oncology patients. J Clin Oncol 2003; 21: 3220–3225.
- 3Quittner AL, Espelage D, Opipari L, Carter B, Eid N, Eigen H. Role strain in couples with and without a child with chronic illness: association with marital satisfaction, intimacy, and daily mood. Health Psychol 1998; 17: 112–124.
- 4Stern M, Sens B, Wiedemann B, Busse O, Damm G, Wenzlaff P. Qualitätssicherung Mukoviszidose. Überblick über den Gesundheitszustand der Patienten in Deutschland 2005. Berlin: Medizinisch Wissenschaftliche Verlagsgesellschaft; 2007.
- 5Barker DH, Quittner AL. A biopsychosocial model of CF: social and emotional functioning, adherence and quality of life. In: J Allen, H Panitch, R Rubenstein, editors. Lung biology in health and disease series: cystic fibrosis. New York: Informa Healthcare; 2010. pp. 468–481.
- 6Rapoff MA. Adherence to pediatric medical regimens. New York: Kluwer Academic/Plenum Publishers; 1999.
- 7Modi AC, Lim CS, Yu N, Geller D, Wagner MH, Quittner AL. A multi-method assessment of treatment adherence for children with cystic fibrosis. J Cyst Fibros 2006; 5: 177–185.
- 8Quittner AL, Drotar D, Ievers-Landis CE, Slocum N, Seidner D, Jacobsen J. Adherence to medical treatments in children with cystic fibrosis: the development and evaluation of family-based interventions. In: D Drotar, editor. Promoting adherence to medical treatments in childhood chronic illness: concepts, methods and interventions. Mahwah, NJ: Lawrence Earlbaum Associates; 2000. pp. 383–407.
- 9Anthony H, Paxon S, Bines J, Phelan P. Psychosocial predictors of adherence of nutritional recommendations and growth outcomes in children with cystic fibrosis. J Psychosom Res 1999; 47: 623–634.
- 10Modi AC, Marciel KK, Slater SK, Drotar D, Quittner AL. The influence of parental supervision on medical adherence in adolescents with cystic fibrosis: developmental shifts from pre to late adolescence. Child Health Care 2008; 37: 78–92.
- 11Patterson JM, Budd J, Goetz D, Warwick WJ. Family correlates of a 10-year pulmonary health trend in cystic fibrosis. Pediatrics 1993; 91: 383–389.
- 12Patterson JM, McCubbin HI, Warwick W. The impact of family functioning on health changes in children with cystic fibrosis. Soc Sci Med 1990; 31: 159–164.
- 13Ievers CE, Drotar D. Family and parental functioning in cystic fibrosis. J Dev Behav Ped 1996; 17: 48–55.
- 14Quittner AL, Barker DH, Marciel KK, Grimley ME. Cystic fibrosis: a model for drug discovery and patient care. In: MC Roberts, RG Steele, editors. Handbook of pediatric psychology. New York: Guilford Press; 2009. pp. 271–286.
- 15Quittner AL, Barker DH, Snell C, Grimley ME, Marciel K, Cruz I. Prevalence and impact of depression in cystic fibrosis. Curr Opin Pulm Med 2008; 14: 582–588.
- 16Yilmaz O, Sogut A, Gulle S, Can D, Ertan P, Yuksel H. Sleep quality and depression-anxiety in mothers of children with two chronic respiratory diseases: asthma and cystic fibrosis. J Cyst Fibros 2008; 7: 495–500.
- 17Driscoll KA, Montag-Leifling K, Acton JD, Modi AC. Relations between depressive and anxious symptoms and quality of life in caregivers of children with cystic fibrosis. Pediatr Pulmonol 2009; 44: 784–792.
- 18Quittner AL, Barker DH, Geller D, Butt S, Gondor M. Effects of maternal depression on electronically monitored enzyme adherence and changes in weight for children with CF [abstract]. J Cyst Fibros 2007; 6: S77.
10.1016/S1569-1993(07)60292-6 Google Scholar
- 19Smith BA, Modi AC, Quittner AL, Wood L. Depressive symptoms in children with cystic fibrosis and parents and its effects on adherence to airway clearance. Pediatr Pulmonol 2010; 45: 756–763.
- 20Lawoko S, Soares JJF. Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res 2003; 12: 655–666.
- 21Goldbeck L. The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 2006; 15: 1121–1131.
- 22Hatzmann J, Heymans HS, Carbonell A, van Praag BM, Grootenhuis MA. Hidden consequences of success in pediatrics: parental health-related quality of life—results from the Care Project. Pediatrics 2008; 122: e1030–1038.
- 23Klassen AF, Klaassen R, Dix D, Pritchard S, Yanofsky R, O'Donnell M, Scott A, Sung L. Impact of caring for a child with cancer on parents' health-related quality of life. J Clin Oncol 2008; 26: 5884–5889.
- 24Goldbeck L, Besier T, Hinz A, Singer S, Quittner AL, The TIDES Study Group. Prevalence of anxious and depressive symptoms in German patients with cystic fibrosis. Chest 2010; 138: 929–936.
- 25Henrich G, Herschbach P. Questions on Life Satisfaction (FLZM)—a short questionnaire for assessing subjective quality of life. Eur J Psychol Assess 2000; 16: 150–159.
- 26Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 1983; 67: 361–370.
- 27Herrmann C. International experiences with the Hospital Anxiety and Depression Scale—a review of validation data and clinical results. J Psychosom Res 1997; 42: 17–41.
- 28Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 2002; 52: 69–77.
- 29Herrmann-Lingen C, Buss U, Snaith RP. HADS-D Hospital Anxiety and Depression Scale—Deutsche version. 2nd edition. Bern: Huber; 2005.
- 30Radloff LS. The CES-D scale: a self report depression scale for research in the general population. Appl Psychol Meas 1977; 1: 385–401.
- 31Hautzinger M, Bailer M. Allgemeine depressionsskala. 1st edition. Göttingen: Hogrefe; 1993.
- 32Herschbach P, Henrich G, Strasburger CJ, Feldmeier H, Marin F, Attanasio AM, Blum WF. Development and psychometric properties of a disease-specific quality of life questionnaire for adult patients with growth hormone deficiency. Eur J Endocrinol 2001; 145: 255–265.
- 33Goldbeck L, Schmitz TG. Comparison of three generic questionnaires measuring quality of life in adolescents and adults with cystic fibrosis: the 36-item short form health survey, the quality of life profile for chronic diseases, and the questions on life satisfaction. Qual Life Res 2001; 10: 23–36.
- 34Goldbeck L, Zerrer S, Schmitz TG. Monitoring quality of life in outpatients with cystic fibrosis: feasibility and longitudinal results. J Cyst Fibros 2007; 6: 171–178.
- 35Hinz A, Schwarz R. Angst und depression in der allgemeinbevölkerung. Psychother Psychosom Med Psychol 2001; 51: 193–200.
- 36Henrich G, Herschbach P. FLZM—Fragen zur LebenszufriedenheitModule. Version für Erwachsene. Kurzbeschreibung und Vergleichsdaten. München: Klinik und Poliklinik für Psychosomatische Medizin; Psychotherapie und Medizinische Psychologie; 2006.
- 37Bortz J, Döring N. Forschungsmethoden und evaluation für human- und Sozialwissenschaftler. 4th edition. Heidelberg:
Springer-Verlag; 2006.
10.1007/978-3-540-33306-7 Google Scholar
- 38Thoren CT, Petermann F. Reviewing asthma and anxiety. Respir Med 2000; 94: 409–415.
- 39Brown ES, Gan V, Jeffress J, Mullen-Gingrich K, Khan DA, Wood BL, Miller BD, Gruchalla R, Rush AJ. Psychiatric symptomatology and disorders in caregivers of children with asthma. Pediatrics 2006; 118: e1715–e1720.
- 40White T, Miller J, Smith GL, McMahon WM. Adherence and psychopathology in children and adolescents with cystic fibrosis. Eur Child Adolesc Psychiatry 2009; 18: 96–104.
- 41Ullrich G, Wiedau-Görs S, Steinkamp G, Bartig HJ, Schulz W, Freihorst J. Parental fears of Pseudomonas infection and measures to prevent its acquisition. J Cyst Fibros 2002; 1: 122–130.
- 42Smith BA, Shuchman M. Problem of nonadherence in chronically ill adolescents: strategies for assessment and intervention. Curr Opin Pediatr 2005; 17: 613–618.
- 43Kendler KS, Davis CG, Kessler RC. The familial aggregation of common psychiatric and substance use disorders in the National Comorbidity survey: a family history study. Br J Psychiatry 1997; 170: 541–548.
- 44Lieb R, Isensee B, Höfler M, Pfister H, Wittchen H-U. Parental major depression and the risk of depression and other mental disorders in offspring. Arch Gen Psychiatry 2002; 59: 365–374.
- 45Quittner AL, Slater S. Parenting stress, depression, and caregiving for young children with cystic fibrosis. Ped Pulmonol 2005; 28: 180–181.
- 46Glasscoe C, Lancaster GA, Smyth RL, Hill J. Parental depression following the early diagnosis of cystic fibrosis: a matched, prospective study. J Pediatr 2007; 150: 185–191.
- 47 CF Foundation. Patient Registry. Annual Data Report 2008. http://www.cff.org/UploadedFiles/research/ClinicalResearch/2008-Patient-Registry-Report.pdf
- 48Quittner AL, Opipari LC, Regoli MJ, Jacobsen J, Eigen H. The impact of caregiving and role strain on family life: comparisons between mothers of children with cystic fibrosis and matched controls. Rehabil Psychol 1992; 37: 275–290.
- 49Modi AC, Quittner AL. Utilizing computerized phone diary procedures to assess health behaviors in family and social contexts. Child Health Care 2006; 35: 29–45.
- 50Staab D, Wenninger K, Gebert N, Rupprath K, Bisson S, Trettin M, Paul KD, Keller KM, Wahn U. Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity? Thorax 1998; 53: 727–731.
- 51Ullrich G, Wünderich R, Ammon M, Ballmann M, Bartig HJ. Extending the TIDES-CF Study to a health services research approach. In: G Ullrich, editor. Psychology in medical settings: lung transplantation and cystic fibrosis. Norderstedt: Books-on-demand; 2010. pp. 107–130.
Citing Literature
