Indian Journal of Health and Wellbeing

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Living with Type 1 Diabetes:Diabetic Children's Experiences and Perceptions


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1 Centre for Early Childhood Development and Research, Jamia Millia Islamia, New Delhi, India
     

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Research studies on health and disease have been recurrently inclined towards demographic and medical perspectives. Lately the importance of 'emic' perspective has been realized in this field so as to understand from the viewpoints, perceptions and opinions of the concerned subjects. With the 'new sociology of childhood' emphasizing the agency of children, it is imperative to consider children's acuity and listen to their assertions in the matters that affect their life and living. The foregoing paper derives its stance from an interpretative research with Type 1 Diabetic children and features their perceptions related to ongoing health condition and treatment seeking, the stressors encountered, impact on their daily activities as well as coping patterns. Thirty children, aged 6-12 years, seeking treatment in a public hospital setting were enrolled for the study with due consent from the guardians and after seeking assent from children themselves. To obtain relevant data, child friendly methods such as storytelling and personalized informal interviews were used and the narratives obtained were analyzed and interpreted thematically. The findings ascertained that children were aware of their condition and found it highly disturbing and stressful. The most cited problems were restricted diet, daily multiple insulin injections and associated pain, episodes of hypoglycemia, constant fatigue, incessant parental vigil and missed school. Besides, it was noted that incongruity with distressed care givers negatively impacted children's own self esteem as well as treatment adherence. A repertorre of positive strategies such as learning to self administer insulin injections, maintaining self written journal of daily blood glucose levels, and self motivated observance of dietary and treatment regimen were also noted in a few children. The study purports engaging opportunities for diabetic children to express their views, integrating their perspectives in health cared delivery and a deliberate strategy to assist them tide over their condition.

Keywords

Type 1 Diabetes, Children, Insulin, Caregivers.
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  • American Diabetes Association (2000). Standards of medical care for patients with diabetes mellitus. Diabetes Care, 23, 32-42.

  • American Diabetes Association (2003). Standards of medical care for patients with diabetes mellitus. Diabetes Care, 25,33-50.

  • American Diabetes Association (2005). Care of children and adolescents with type 1 diabetes. Diabetes Care, 25,186-212.

  • Anderson, BJ. (2011). Parenting styles and parenting practices in pediatric diabetes. Diabetes Care, 34(8), 1885-1886.

  • Anderson, BJ., & Brackett, J. (2005). Diabetes in children, psychology in diabetes care. In J.S. Frank and T. C. Skinner (Eds.), John Wiley and Sons Limited: West Sussex (Ch, 1,2 ed.,pp. 1-25). England. ISBN-13 978-0-470-02384-8.

  • Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46,722-730.

  • Bregani, P., Delia, P.V, & Carbone, A. (1979). Attitude of juvenile diabetics and their families towards dietetic regimen. Paediatric and Adolescent Endocrinology, 7,159-163.

  • Burke, S., Kauffmann, E., Costello, E., & Dillon, M. (1991). Hazardous secrets and reluctantly taking charge: Parenting a child with repeated hospitalizations. Image, 23(1), 39-45.

  • Cohen, S. (1999). Families coping with childhood chronic illness: A research review Family, Systems and Health, 17(2), 149-164.

  • Gibson, C. (1988). Perspectives in parental coping with a chronically ill child: The case of cystic fibrosis. Issues in Comprehensive Pediatric Nursing, 11, 33-41.

  • Grey, M., Boland, E.A., Yu, C, Sullivan-Bolyai, S., & Tamborlane, W.V. (1998). Personal and social factors associated with quality of life in adolescents with IDDM. Diabetes Care, 21(6) 909-914.

  • Hanson, C. L., De Guire, M. J., Schinkel, A. M., Kolterman, O. G., Goodman, J. P., & Buckingham, B. A. (1996). Self-care behaviors in insulin-dependent diabetes: evaluative tools and their associations with glycemic control. Journal of Pediatric Psychology, 21,467-482.

  • Hatton, D., Canam, C, Thome, S., & Hughes, A. (1995). Parents perceptions of caring for an infant or toddler with diabetes. Journal of Advanced Nursing, 22, 569-577.

  • Herbst, A., Bachran, R, Kapellen, T, & Holl, R (2006). Effects of regular physical activity on control of glycemia in pediatric patients with type 1 diabetes mellitus. Archives of Pediatrics and Adolescent Medicine, 160(6), 573-577.

  • Hirose, T, & Ueda, R. (1990). Long-term follow up study of cerebral palsy children and coping behavior of parents. Journal of Advanced Nursing, 15, 762-770.

  • International Diabetes Federation (2011). IDF Diabetes Atlas, International Diabetes Federation, Brussels, Belgium, (6th ed.). http://www.idf.org/diabetesatlas.

  • Johnson, S. (1980). Psychosocial factors in juvenile diabetes: A review. Journal of Behavioral Medicine, 3, 95-116.

  • Jones, K. L. (1998). Non-insulin dependent diabetes in children and adolescents: The therapeutic challenge. Clinical Pediatrics, 37, 103-110.

  • Kalra, S., Sridhar, G.R, Balhara, Y.S., Sahay, R.K., Bantwal, G., Baruah, MP. Unnikrishnan, A.G., Madhu, K., Verma, K., Sreedevi, A., Shukla, R, & Kumar P.K.M. (2013). National recommendations: Psychosocial management of diabetes in India. Indian Journal of Endocrine Metabolism, 17,376-95

  • Kovacs, M, Goldston, D., Obrosky, S., & Iyengar, S. (1992). Prevalence and predictors of pervasive noncompliance with medical treatment among youths with insulin dependent diabetes mellitus. Journal of the American Academy of Child and Adolescent Psychiatry, 31,1112-1119.

  • La-Greca, A. M (1990). Issues in adherence with pediatric regimens. Journal of Pediatric Psychology, 75,423-436.

  • Leaverton, D. R (1979). The child with diabetes mellitus. In J. Noshpitz (Ed), Basic handbook of Child Psychiatry (Vol.1, pp. 425-458). Basic Books, New York.

  • Lee, CM., & Gotlib, I.H. (1991). Family disruption, parental availability, and child adjustment: An integrative review. In R.J. Prinz (Ed), Advances in the Behavioral Assessment of Children and Families (Vol. 5, pp. 166-199). London: Jessica Kingsley.

  • Matziou, V., Tsoumakas, K.,Vlahioti, E., Chrysicopoulou, L., Galanis, P., & Petsios, K. (2011). Factors influencing the quality of life of young patients with diabetes. Journal of Diabetes, 3, 82-90.

  • Mehta, N.N., McGillicuddy, F.C., Anderson, P.D., Hinkle, C.C., Shah, R, & Pruscino. L. (2009). Experimental endotoxemia induces adipose inflammation and insulin resistance in humans. Diabetes, 59(1), 172-181.

  • Moussa, M.A.A., Alsaeid, M., Abdella, N, Refai, T.M.K., Al-Sheikh, N, & Gomez, J.E (2005). Social and psychological characteristics of kuwaiti children and adolescents with type 1 diabetes. Social Science and Medicine, 60(8), 1835-1844.

  • Pastors, J.G., & Franz, M.J. (2013). Effectiveness of medical nutrition therapy in diabetes. In M.J. Franz and A.B. Evert (Eds.), American Diabetes Association Guide to Nutrition Therapy for Diabetes (p. 265). Alexandria, VA, USA: American Diabetes Association.

  • Puri,K.,Savita,S.,&Jain,V.(2013). Behavioral and cognitive profile and quality of life of Indian children with Type 1 Diabetes. Journal of Pediatric Endocrinology and Metabolism. Retrieved from http://mc.manuscriptcentral.com/jpem/2013/0121

  • Ryden, O., Nevander, L., Johnsson, P., Hansson, K., Kronvall, P., Sjoblad, S., & Westbom, L. (1994). Family therapy in poorly controlled juvenile IDDM: Effects on diabetic control, self-evaluation and behavioural symptoms. Acta Paediatrica, 83, 285-291.

  • Schafer, L. C, Glasgow, R E., McCaul, K. D., & Dreher, M. (1983). Adherence to IDDM regimens: Relationship to psychosocial variables and metabolic control. Diabetes Care, 6, 493-498.

  • Schafer, L. C, McCaul, K. D., & Glasgow, R. E. (1986). Supportive and nonsupportive family behaviors: Relationships to adherence and metabolic control in persons with type 1 diabetes. Diabetes Care, 9, 179-185.

  • Sayfer, A.W., Hauser, S.T., Jacobson, A.M., Bliss, R, Herskowitz, R.D., & Wolfsdorf. J. I. (1993). The impact of the family on diabetes adjustment: A developmental perspective. Child and Adolescent Social Work Journal, 10, 123-140.

  • Seibel, J.A. (2009). Diabetes and eye problems, http://diabetes.webmd.com/causes-treatments.

  • Sridhar, G. R. (1997). Diabetes mellitus in children below the age of five. Indian Journal of Endocrinolgy and Metabolism, 1,13-1 5.

  • Sridhar, G.R., & Madhu, K. (2002). Psychosocial and cultural issues in diabetes mellitus. Current Science, 83(2), 25.

  • Thompson, S. J., Auslander, W. E., & White, N. H. (2001). Comparison of single-mother and two-parent families on metabolic control of children with diabetes. Diabetes Care, 24, 234-238.

  • Von-Korff, M., Gruman, J., Schaefer, J., Curry, S.J., & Wagner, E.H. (1997). Collaborative management of chronic illness. Annals of Internal Medicine, 127(12). 1097-1102.

  • Ward, S., & Hisley, S. (2009). Maternal child nursing care: Optimizing outcomes for mothers, children and families. Philadelphia, FA., Davis Company, Pp. 641-662.

  • Whittemore, R, Jaser, S., Chao, A., Jang, M., & Grey.M. (2012). Review psychological experience of parents of children with type 1 diabetes: A systematic mixed-studies review. Diabetes Education, 38(4), 562-579.

  • Wysocki, T, Huxtable, K., Linscheid, T.R, & Wayne, W. (1989). Adjustment to diabetes mellitus in preschoolers and their mothers. Diabetes Care, 12, 524-529.

  • Wysocki, T, Greco, P., & Buckloh, L. M. (2003). Childhood diabetes in psychological context. In M. C. Roberts (Ed.), Handbook of Pediatric Psychology (pp. 304-320). New York: The Guilford Press.


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  • Living with Type 1 Diabetes:Diabetic Children's Experiences and Perceptions

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Authors

Neelima Chopra
Centre for Early Childhood Development and Research, Jamia Millia Islamia, New Delhi, India
Bindiya Narang
Centre for Early Childhood Development and Research, Jamia Millia Islamia, New Delhi, India

Abstract


Research studies on health and disease have been recurrently inclined towards demographic and medical perspectives. Lately the importance of 'emic' perspective has been realized in this field so as to understand from the viewpoints, perceptions and opinions of the concerned subjects. With the 'new sociology of childhood' emphasizing the agency of children, it is imperative to consider children's acuity and listen to their assertions in the matters that affect their life and living. The foregoing paper derives its stance from an interpretative research with Type 1 Diabetic children and features their perceptions related to ongoing health condition and treatment seeking, the stressors encountered, impact on their daily activities as well as coping patterns. Thirty children, aged 6-12 years, seeking treatment in a public hospital setting were enrolled for the study with due consent from the guardians and after seeking assent from children themselves. To obtain relevant data, child friendly methods such as storytelling and personalized informal interviews were used and the narratives obtained were analyzed and interpreted thematically. The findings ascertained that children were aware of their condition and found it highly disturbing and stressful. The most cited problems were restricted diet, daily multiple insulin injections and associated pain, episodes of hypoglycemia, constant fatigue, incessant parental vigil and missed school. Besides, it was noted that incongruity with distressed care givers negatively impacted children's own self esteem as well as treatment adherence. A repertorre of positive strategies such as learning to self administer insulin injections, maintaining self written journal of daily blood glucose levels, and self motivated observance of dietary and treatment regimen were also noted in a few children. The study purports engaging opportunities for diabetic children to express their views, integrating their perspectives in health cared delivery and a deliberate strategy to assist them tide over their condition.

Keywords


Type 1 Diabetes, Children, Insulin, Caregivers.

References