nach oben

Indian Journal of Pediatrics

Erschienen in:

01.11.2015 | Original Article

Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study

verfasst von: Ankush K. Khanna, Anusha Prabhakaran, Priyanka Patel, Jaishree D. Ganjiwale, Somashekhar M. Nimbalkar

Erschienen in: Indian Journal of Pediatrics | Ausgabe 11/2015

Einloggen, um Zugang zu erhalten

Abstract

Objectives

To explore social, psychological and financial burden on caregivers of chronically diseased children.

Methods

Participants were recruited from ambulatory and hospital areas in pediatrics department following informed consent. Parents who were caregivers of children 18y or below in age with chronic illness were included. Socio-demographic details were collected using a semi structured questionnaire, adapted from Family Burden Interview Schedule (FBIS). The psychological well-being of caregivers was assessed using Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder (GAD-7). Descriptive analysis and ANOVA was done for comparing mean scores of responses to analyze financial, psychological and social burden across different diagnosis.

Results

A total of 204 (89 females:115 males) participated. Only 27% were receiving some benefits from government or hospital side. No depressive symptoms were reported by 25% caregivers, while 37% reported mild and 38% moderate to severe depressive symptoms. No anxiety symptoms were reported by 33%, while 50% reported mild and 17% moderate to severe anxiety symptoms. No association was seen between gender of the caregiver and depressive or anxiety symptoms. Significantly higher financial and social burden was seen in cerebral palsy and cancer groups vis-a-vis other diseases, being least in thalassemia. Disruption of routine life was highest in cancer group caregivers followed by those in cerebral palsy group.

Conclusions

Most caregivers reported moderate depressive symptoms and mild to moderate anxiety symptoms. Cerebral palsy caused more social and financial burden on family vis-a-vis thalassemia. Social and financial burden on families of remaining diseases was comparable.

Pless IB, Pinkerton P. Chronic childhood disorder: promoting patterns of adjustment. Chicago: Year Book Medical; 1975.

American Academy of Pediatrics Committee on Children with Disabilities and Committee on Psychosocial Aspects of Child and Family Health. Psychosocial risks of chronic health conditions in childhood and adolescence. Pediatrics. 1993;92:876–8.

Bagga A, Mantan M. Nephrotic syndrome in children. Indian J Med Res. 2005;122:13–28.PubMed

Shah D, Choudhury P, Dubey AP. Current trends in management of the beta thalassemias. Indian Pediatr. 1999;36:1229–42.PubMed

Dey SK. Education of physician on end of life care: Indian perspective. Indian Pediatr. 2000;37:1047–50.

Selye H. The stress of life. New York: McGraw Hill; 1976.

de Paula ES, Nascimento LC, Rocha SM. Roles assessment in families of children with chronic renal failure on peritoneal dialysis. Int J Nurs Pract. 2008;14:215–20.CrossRefPubMed

Tong A, Lowe A, Sainsbury P, Craig JC. Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics. 2008;121:349–60.CrossRefPubMed

Morrow AM, Hayen A, Quine S, Scheinberg A, Craig JC. A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev. 2012;38:186–95.CrossRefPubMed

10.

Institute of Medicine. Crossing the quality chasm: a new health system for the twenty-first century. Washington: National Academy Press; 2001.

11.

National Alliance for Caregiving; AARP. Caregiving in the U.S.: executive summary. Bethesda: National Alliance for Caregiving; 2009.

12.

Tsai AC, Morton SC, Mangione CM, Keeler EB. A meta-analysis of interventions to improve care for chronic illnesses. Am J Manag Care. 2005;11:478–88.PubMedCentralPubMed

13.

Mitra S, Banerjee S. The impact of pediatric nephrotic syndrome on families. Pediatr Nephrol. 2011;26:1235–40.CrossRefPubMed

14.

Pai S, Kapur RC. The burden on the family of a psychiatric patient: development of an interview schedule. Br J Psychiatry. 1981;138:332–5.CrossRefPubMed

15.

Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depressive symptoms severity measure. J Gen Intern Med. 2001;16:606–13.PubMedCentralCrossRefPubMed

16.

Spitzer RL, Kroenke K, Williams JB, Lowe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166:1092–7.CrossRefPubMed

17.

Family Caregiver Alliance. Caregiver assessment: principles, guidelines and strategies for change. Report from a national consensus development conference. Vol. I. San Francisco: Family Caregiver Alliance; 2006.

18.

Pinquart M, Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18:250–67.CrossRefPubMed

19.

Rao P, Pradhan PV, Shah H. Psychopathology and coping in parents of chronically ill children. Indian J Pediatr. 2004;71:695–9.CrossRefPubMed

20.

Shatla R, Sayyah Hel S, Azzam H, Elsayed RM. Correlates of parental stress and psychopathology in pediatric epilepsy. Ann Indian Acad Neurol. 2011;14:252–6.PubMedCentralCrossRefPubMed

21.

Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta-analysis. J Pediatr Psychol. 2002;27:699–710.CrossRefPubMed

22.

Medway M, Tong A, Craig JC, et al. Parental perspectives on the financial impact of caring for a child with CKD. Am J Kidney Dis. 2015;65:384–93.CrossRefPubMed

23.

Caro JJ, Ward A, Green TC, et al. Impact of thalassemia major on patients and their families. Acta Hematol. 2002;107:150–7.CrossRef

24.

Shaligram D, Girimaji SC, Chaturvedi SK. Quality of life issues in caregivers of youngsters with thalassemia. Indian J Pediatr. 2007;74:275–8.CrossRefPubMed

25.

Nahalla CK, FitzGerald M. The impact of regular hospitalization of children living with thalassaemia on their parents in Sri Lanka: a phenomenological study. Int J Nurs Pract. 2003;9:131–9.CrossRefPubMed

26.

Lal A, Kumar L, Malhotra S. Socio-economic burden of childhood asthma. Indian Pediatr. 1994;31:425–32.PubMed

27.

Pruthi GK, Singh TB. Psychosocial burden and quality of life in parents of children with thalassemia and CP. Delhi Psychol. 2010;2:46–57.

28.

Altindağ O, Işcan A, Akcan S, Köksal S, Erçin M, Ege L. Anxiety and depression in mothers of children with cerebral palsy. Turk J Phys Med Rehabil. 2007;53:22–4.

29.

Moreira H, Carona C, Silva N, Frontini R, Bullinger M, Canavarro M. Psychological and quality of life outcomes in pediatric populations: a parent–child perspective. J Pediatr. 2013;163:1471–8.CrossRefPubMed

30.

Feizi A, Najmi B, Salesi A, Chorami M, Hoveidafar R. Parenting stress among mothers of children with different physical, mental, and psychological problems. J Res Med Sci. 2014;19:145–52.PubMedCentralPubMed

31.

Gray WN, Graef DM, Schuman SS, Janicke DM, Hommel KA. Parenting stress in pediatric IBD: relations with child psychopathology, family functioning, and disease severity. J Dev Behav Pediatr. 2013;34:237–44.PubMedCentralCrossRefPubMed

32.

Kieckhefer GM, Trahms CM, Churchill SS, Kratz L, Uding N, Villareale N. A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions. Matern Child Health J. 2014;18:563–74.CrossRefPubMed

Titel: Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study
verfasst von: Ankush K. Khanna
Anusha Prabhakaran
Priyanka Patel
Jaishree D. Ganjiwale
Somashekhar M. Nimbalkar
Publikationsdatum: 01.11.2015
Verlag: Springer India
Erschienen in: Indian Journal of Pediatrics / Ausgabe 11/2015
Print ISSN: 0019-5456
Elektronische ISSN: 0973-7693
DOI: https://doi.org/10.1007/s12098-015-1762-y

Update Pädiatrie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.

Newsletter bestellen

Springer Medizin

Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study