ORIGINAL PAPER
“They called me a terrorist”: Social and internalized stigma in Latino youth with type 1 diabetes
 
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Submission date: 2018-06-02
Final revision date: 2018-10-02
Acceptance date: 2018-10-03
Online publication date: 2018-11-28
Publication date: 2018-11-28
 
Health Psychology Report 2018;6(4):307–320
 
KEYWORDS
TOPICS
ABSTRACT
Background:
Diabetes-related stigma (DRS) globally affects patients’ lives. Over a third of adolescents with type 1 diabetes (T1D) in Puerto Rico reported concerns of others knowing about their diabetes and about being different.

Participants and procedure:
We examined DRS among 65 T1D Latino youth (aged 12-17). During a depression-treatment study screening, they answered open-ended questions about diabetes-related concerns/difficulties and issues bothering them while interacting with peers, family, and healthcare professionals because of T1D. Using content analysis, we classified responses into Social stigma (SS), Internalized stigma (IS), and No stigma. Four SS and IS sub-categories were developed.

Results:
After coding, inter-rater reliability (Cohen’s κ) ranged from 0.73 to 1.00 (p < .001). Forty-four youth (67.69%) reported at least one DRS verbalization, and 25 reported more than one. Both SS and IS were identified in 32 (49.23%) adolescents. Among SS experiences were: “they call me a junkie [because of insulin shots]”; “they call me a terrorist [because of the insulin pump]”. IS verbalizations included: “I’ve never wanted to accept that I have T1D, so I don’t practice good self-care”; “at times I do not feel the same as others”. We found more stigma-related verbalizations among those from urban zones or larger families. DRS was related to increased depressive symptoms and risk of a depressive disorder. Peers were the main source of SS.

Conclusions:
DRS was common, pervasive, and linked to depression. This study innovatively examines DRS in an exclusively T1D Latino and adolescent sample. Understanding its extent and nature is essential for developing interventions to address DRS.

 
REFERENCES (71)
1.
Abdoli, S., Abazari, P., & Mardanian, L. (2013a). Exploring diabetes type 1-related stigma. Iranian Journal of Nursing and Midwifery Research, 18, 65–70.
 
2.
Abdoli, S., Irani, M. D., Parvizi, S., Fatemi, N. S., & Amini, M. (2013b). Living in the shadow and light: Iranian youths’ responses to diabetes-related stigma. European Online Journal of Natural and Social Sciences, 2, 439–448.
 
3.
Adams, O. P., & Carter, A. O. (2010). Diabetes and hypertension guidelines and the primary health care practitioner in Barbados: knowledge, attitudes, practices and barriers: a focus group study. BMC Family Practice, 11, 96–96. doi: 10.1186/1471-2296-11-96.
 
4.
Alzubaidi, H., Mc Mamara, K., Chapman, C., Stevenson, V., & Marriott, J. (2015). Medicine-taking experiences and associated factors: comparison between Arabic-speaking and Caucasian English-speaking patients with type 2 diabetes. Diabetic Medicine: A Journal of the British Diabetic Association, 32, 1625–1633. doi: 10.1111/dme.12751.
 
5.
Banion, C. R., Miles, M. S., & Carter, M. C. (1983). Problems of mothers in management of children with diabetes. Diabetes Care, 6, 548–551.
 
6.
Bossy, D., Knutsen, I. R., Rogers, A., & Foss, C. (2017). Group affiliation in self-management: support or threat to identity? Health Expectations, 20, 159–170. doi: 10./hex.12448.
 
7.
Bravo, M., Ribera, J., Rubio-Stipec, M., Canino, G., Shrout, P., Ramírez, R., Fábregas, L., Chavez, L., Alegría, M., Bauermeister, J. J., & Taboas, A. M. (2001). Test-retest reliability of the Spanish version of the Diagnostic Interview Schedule for Children (DISC-IV). Journal of Abnormal Child Psychology, 29, 433–444. doi: 10.1023/A:1010499520090.
 
8.
Brazeau, A.-S., Nakhla, M., Wright, M., Henderson, M., Panagiotopoulos, C., Pacaud, D., Kearns, P., Rahme, E., Da Costa, D., & Dasgupta, K. (2018). Stigma and its association with glycemic control and hypoglycemia in adolescents and young adults with type 1 diabetes: Cross-sectional study. Journal of Medical Internet Research, 20, e151. doi: 10.2196/jmir.9432.
 
9.
Browne, J. L., Ventura, A., Mosely, K., & Speight, J. (2013). ‘I call it the blame and shame disease’: a qualitative study about perceptions of social stigma surrounding type 2 diabetes. BMJ Open, 3, e003384–e003384. doi: 10.1136/bmjopen-2013-003384.
 
10.
Browne, J. L., Ventura, A., Mosely, K., & Speight, J. (2014). ‘I’m not a druggie, I’m just a diabetic’: a qualitative study of stigma from the perspective of adults with type 1 diabetes. BMJ Open, 4, e005625–e005625. doi: 10.1136/bmjopen-2014-005625.
 
11.
Brundisini, F., Giacomini, M., DeJean, D., Vanstone, M., Winsor, S., & Smith, A. (2013). Chronic disease patients’ experiences with accessing health care in rural and remote areas: a systematic review and qualitative meta-synthesis. Ontario Health Technology Assessment Series, 13, 1–33. Available from http://www.hqontario.ca/en/ documents/eds/2013/full-report-OCDM-rural-health-care.pdf.
 
12.
Caban, A., & Walker, E. A. (2006). A systematic review of research on culturally relevant issues for Hispanics with diabetes. The Diabetes Educator, 32, 584–595. doi: 10.1177/0145721706290435.
 
13.
Cabassa, L. J., Hansen, M. C., Palinkas, L. A., & Ell, K. (2008). Azúcar y nervios: Explanatory models and treatment experiences of Hispanics with diabetes and depression. Social Science & Medicine, 66, 2413–2424. doi: 10.1016/j.socscimed.2008.01.054.
 
14.
Carbone, E. T., Rosal, M. C., Torres, M. I., Goins, K. V., & Bermudez, O. I. (2007). Diabetes self-management: Perspectives of Latino patients and their health care providers. Patient Education and Counseling, 66, 202–210. doi: 10.1016/j.pec.2006.12.003.
 
15.
Centers for Disease Control and Prevention. (2016). Chronic Disease Indicators (CDI) Data. Retrieved from http://nccd.cdc.gov/cdi.
 
16.
Ciechanowski, P. S., Katon, W. J., Russo, J. E., & Walker, E. A. (2001). The patient-provider relationship: Attachment theory and adherence to treatment in diabetes. American Journal of Psychiatry, 158, 29–35. doi: 10.1176/appi.ajp.158.1.29.
 
17.
Clarke, J., Vatiliotis, V., Verge, C. F., Holmes-Walker, J., Campbell, L. V., Wilhelm, K., & Proudfoot, J. (2015). A mobile phone and web-based intervention for improving mental well-being in young people with type 1 diabetes: design of a randomized controlled trial. JMIR Research Protocols, 4, e50. doi: 10.2196/resprot.4032.
 
18.
Commissariat, P. V., Kenowitz, J. R., Trast, J., Heptulla, R. A., & Gonzalez, J. S. (2016). Developing a personal and social identity with type 1 diabetes during adolescence: A hypothesis generative study. Qualitative Health Research, 26, 672–684. doi: 10.1177/1049732316628835.
 
19.
Coyne, J. C. (1976). Depression and the response of others. Journal of Abnormal Psychology, 85, 186–193. doi: 10.1037/0021-843x.85.2.186.
 
20.
Cumba-Avilés, E. (2017). Cognitive-behavioral group therapy for Latino youth with type 1 diabetes and depression: A case study. Clinical Case Studies, 16, 58–75. doi: 10.1177/1534650116668270.
 
21.
Cumba-Avilés, E., & Sáez-Santiago, E. (2016). Research program on type 1 diabetes and youth depression in Puerto Rico. Revista Puertorriqueńa de Psicología, 27, 44–60.
 
22.
Della, L. J. (2011). Exploring diabetes beliefs in at risk Appalachia. The Journal of Rural Health, 27, 3–12. doi: 10.1111/j.1748-0361.2010.00311.x.
 
23.
Della, L. J., Ashlock, M. Z., & Basta, T. B. (2011). Social construction of diabetes-related stigma in Appalachia: Implications for local public health officials. Paper presented at the American Public Health Association 139th Annual Meeting and Exposition, Washington, DC.
 
24.
Earnshaw, V. A. (2011). Chronic illness and anticipated stigma. (Dissertation), University of Connecticut. Retrieved from https://opencommons.uconn.edu/... AAI3485227.
 
25.
Earnshaw, V. A., & Quinn, D. M. (2012). The impact of stigma in healthcare on people living with chronic illnesses. Journl of Health Psychology, 17, 157–168. doi: 10.1177/1359105311414952.
 
26.
Elissa, K., Bratt, E. L., Axelsson, A. B., Khatib, S., & Sparud-Lundin, C. (2017). Societal norms and conditions and their influence on daily life in children with type 1 diabetes in the West Bank in Palestine. Journal of Pediatric Nursing, 33, 16–22. doi: 10./j.pedn.2016.12.005.
 
27.
Fischer, A. E. (1948). Factors responsible for emotional disturbances in diabetic children. Nervous Child, 7, 78–83.
 
28.
Folias, A. E., Brown, A. S., Carvalho, J., Wu, V., Close, K. L., & Wood, R. (2014). Investigation of the Presence and Impact of Social Stigma on Patients with Diabetes in the USA. Paper presented at the 74th American Diabetes Association Annual Convention, Boston, MA.
 
29.
Goffman, E. (1963). Stigma: notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall.
 
30.
Gray, A. J. (2002). Stigma in psychiatry. Journal of the Royal Society of Medicine, 95, 72–76.
 
31.
Gredig, D., & Bartelsen-Raemy, A. (2017). Diabetes-related stigma affects the quality of life of people living with diabetes mellitus in Switzerland: implications for healthcare providers. Health & Social Care in the Community, 25, 1620–1633. doi: 10.1111/hsc.12376.
 
32.
Hansen, M. C., & Cabassa, L. J. (2012). Pathways to depression care: help-seeking experiences of low-income Latinos with diabetes and depression. Journal of Immigrant and Minority Health, 14, 1097–1106. doi: 10.1007/s10903-012-9590-x.
 
33.
Hapunda, G., Abubakar, A., van de Vijver, F., & Pouwer, F. (2015). Living with type 1 diabetes is challenging for Zambian adolescents: qualitative data on stress, coping with stress and quality of care and life. BMC Endocrine Disorders, 15, 20–20. doi: 10.1186/s12902-015-0013-6.
 
34.
Haugvik, S., Beran, D., Klassen, P., Hussain, A., & Haaland, A. (2017). “My heart burns” – A qualitative study of perceptions and experiences of type 1 diabetes among children and youths in Tajikistan. Chronic Illness, 13, 128–139. doi: 10./1742395316668566.
 
35.
Hart-Kepler, V. L. (2017). Mexican-Born Immigrant Decision-Making About Self-Management of Type 2 Diabetes. (Doctoral dissertation), University of San Diego. Retrieved from http://digital.sandiego.edu/di....
 
36.
Jacoby, A. (1994). Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Social Science and Medicine, 38, 269–274. doi: 10.1016/0277-9536(94)90396-4.
 
37.
Jones, V., & Crowe, M. (2017). How people from ethnic minorities describe their experiences of managing type-2 diabetes mellitus: A qualitative meta-synthesis. International Journal of Nursing Studies, 76, 78–91. doi: 10.1016/j.ijnurstu.2017.08.016.
 
38.
Kato, A., Fujimaki, Y., Fujimori, S., Izumida, Y., Suzuki, R., Ueki, K., Kadowaki, T., & Hashimoto, H. (2016). A qualitative study on the impact of internalized stigma on type 2 diabetes self-management. Patient Education and Counseling, 99, 1233–1239. doi: 10.1016/j.pec.2016.02.002.
 
39.
Kato, A., Takada, M., & Hashimoto, H. (2014). Reliability and validity of the Japanese version of the self-stigma scale in patients with type 2 diabetes. Health And Quality Of Life Outcomes, 12, 179–179. doi: 10.1186/s12955-014-0179-z.
 
40.
Kovacs, M. (2001). Children’s Depression Inventory (CDI): Technical Manual. North Tonawanda, NY: Multi-Health Systems.
 
41.
Lambert, V., & Keogh, D. (2015). Striving to live a normal life: a review of children and young people’s experience of feeling different when living with a long term condition. Journal of Pediatric Nursing, 30, 63–77. doi: 10./j.pedn.2014.09.016.
 
42.
Lee, S., Lee, M. T. Y., Chiu, M. Y. L., & Kleinman, A. (2005). Experience of social stigma by people with schizophrenia in Hong Kong. The British Journal of Psychiatry, 186, 153–157. doi: 10.1192/bjp.186.2.153.
 
43.
Lee, S. M., Lim, L. C., & Koh, D. (2015). Stigma among workers attending a hospital specialist diabetes clinic. Occupational Medicine, 65, 67–71. doi: 10.1093/occmed/kqu150.
 
44.
Liu, N. F., Brown, A. S., Younge, M. F., Guzman, S. J., Close, K. L., & Wood, R. (2017). Stigma in people with type 1 or type 2 diabetes. Clinical Diabetes, 35, 27–34. doi: 10.2337/cd16-0020.
 
45.
Llorente, M. D., & Malphrus, J. E. (Eds.) (2007). Psychiatric disorders and diabetes mellitus. Oxon, UK: Informa Healthcare.
 
46.
Marshall, M., Carter, B., Rose, K., & Brotherton, A. (2009). Living with type 1 diabetes: perceptions of children and their parents. Journal of Clinical Nursing, 18, 1703–1710.
 
47.
McQuillan, L. (2014). Latinos and Hispanics and diabetes: The need for outreach. Insulin Nation. Retrieved from http://insulinnation.com/livin....
 
48.
Mulvaney, S. A., Hood, K. K., Schlundt, D. G., Osborn, C. Y., Johnson, K. B., Rothman, R. L., & Wall-ston, K. A. (2011). Development and initial validation of the barriers to diabetes adherence measure for adolescents. Diabetes Research and Clinical Practice, 94, 77–83. doi: 10.1016/j.diabres.2011.06.010.
 
49.
Muze, K. C., & Majaliwa, E. S. (2015). Type 1 diabetes care updates: Tanzania. Indian Journal of Endocrinology and Metabolism, 19, S12–S13. doi: 10.4103/2230-8210.155348.
 
50.
NCD Risk Factor Collaboration. (2016). Worldwide trends in diabetes since 1980: a pooled analysis of 751 population-based studies with 4.4 million participants. The Lancet, 387, 1513–1530. doi: 10.1016/S0140-6736(16)00618-8.
 
51.
Nishio, I., & Chujo, M. (2017). Self-stigma of patients with type 1 diabetes and their coping strategies. Yonago Acta Medica, 60, 167–173. Available from http://www.lib.tottori-u.ac.jp....
 
52.
O’Donohue, W. T., & Tolle, L. W. (2009). Behavioral approaches to chronic disease in adolescence: A guide to integrative care. New York, NY: Springer.
 
53.
Osborn, C. Y., Amico, K. R., Cruz, N., O’Connell, A. A., Perez-Escamilla, R., Kalichman, S. C., Wolf, S. A. & Fisher, J. D. (2010). A brief culturally tailored intervention for Puerto Ricans with type 2 diabetes. Health Education and Behavior, 37, 849–862. doi: 10.1177/1090198110366004.
 
54.
Piette, J. D., & Kerr, E. A. (2006). The impact of comorbid chronic conditions on diabetes care. Diabetes Care, 29, 725–731. doi: 10.2337/diacare.29.03.06.dc05-2078.
 
55.
Pyatak, E. A., Florindez, D., Peters, A. L., & Weigensberg, M. J. (2014). “We Are All Gonna Get Diabetic These Days”: The Impact of a Living Legacy of Type 2 Diabetes on Hispanic Young Adults’ Diabetes Care. Diabetes Educator, 40, 648–658. doi: 10.1177/0145721714535994.
 
56.
Rankin, D., Harden, J., Jepson, R., & Lawton, J. (2017). Children’s experiences of managing type 1 diabetes in everyday life: a thematic synthesis of qualitative studies. Diabetic Medicine, 34, 1050–1060. doi: 10.1111/dme.13362.
 
57.
Rivera, A., González-Nieves, M. I., Vélez, N., & Colón de Martí, L. N. (2007). Indicadores de síntomas depresivos en una muestra de jóvenes de 12 a 17 ańos de edad con diabetes tipo 1 [Indicators of depressive symptoms in a sample of youth aged 12 to 17 years with type 1 diabetes mellitus]. Puerto Rico Health Science Journal, 26, 51–56.
 
58.
Rosselló, J., & Jiménez-Chafey, M. I. (2007). Depressive and anxious symptomatology in Puerto Rican youth with type 1 diabetes mellitus and their relationship to glycemic control. Ciencias de la Conducta, 22, 103–126.
 
59.
Rosselló, J., & Maysonet-Guzmán, M. (2006). Dificultades y preocupaciones identificadas por jóvenes puertorriqueńos/as con diabetes mellitus insuno-dependientes (IDDM): Su relación con control metabólico, desesperanza, apoyo social y sintomatología depresiva [Difficulties and worries identified by Puerto Rican youth with insulin-dependent diabetes mellitus (IDDM): Their relationship with metabolic control, hopelessness, social support, and depressive symptomatology]. Puerto Rico Health Sciences Journal, 5, 331–335.
 
60.
Sayles, J. N., Ryan, G. W., Silver, J. S., Sarkisian, C. A., & Cunningham, W. E. (2007). Experiences of social stigma and implications for healthcare among a diverse population of HIV positive adults. Journal of Urban Health, 84, 814–828. doi: 10.1007/s11524-007-9220-4.
 
61.
Scambler, G. (1998). Stigma and disease: changing paradigms. Lancet, 352, 1054–1055. doi: 10.1016/s0140-6736(98)08068-4.
 
62.
Schabert, J., Browne, J. L., Mosely, K., & Speight, J. (2013). Social stigma in diabetes: A framework to understand a growing problem for an increasing epidemic. The Patient: Patient-Centered Outcomes Research, 6, 1–10. doi: 10.1007/s40271-012-0001-0.
 
63.
Shaffer, D., Lucas, C. P., Dulcan, M. K., & Schwab-Stone, M. E. (2000). NIMH Diagnostic Interview Schedule for Children Version IV (NIMH DISC-IV): Description, differences from previous versions, and reliability of some common diagnoses. Journal of the American Academy of Child Adolescent Psychiatry, 39, 28–38.
 
64.
Stokes, A., & Preston, S. H. (2017). Deaths attributable to diabetes in the United States: Comparison of data sources and estimation approaches. PLOS ONE, 12, e0170219. doi: 10./journal.pone.0170219.
 
65.
Tak-Ying Shiu, A., Kwan, J. J. Y.-M., & Wong, R. Y.-M. (2003). Social stigma as a barrier to diabetes self-management: implications for multi-level interventions. Journal of Clinical Nursing, 12, 149–150. doi: 10.1046/j.1365-2702.2003.00735.x.
 
66.
Tilden, B., Charman, D., Sharples, J., & Fosbury, J. (2005). Identity and adherence in a diabetes patient: Transformations in psychotherapy. Qualitative Health Research, 15, 312–324. doi: 10.1177/1049732304272965.
 
67.
Vaz, M., Travasso, S. M., & Vaz, M. (2016). Perceptions of stigma among medical and nursing students and tuberculosis and diabetes patients at a teaching hospital in southern India. Indian Journal of Medical Ethics, 1, 8–16. doi: 10.20529/IJME.2016.003.
 
68.
Vishwanath, A. (2014). Negative public perceptions of juvenile diabetics: Applying attribution theory to understand the public’s stigmatizing views. Health Communication, 29, 516–526. doi: 10.1080/10410236.2013.777685.
 
69.
Weiler, D. M., & Crist, J. D. (2009). Diabetes self-management in a Latino social environment. Diabetes Educator, 35, 285–292. doi: 10.1177/0145721708329545.
 
70.
Whittaker, J. A. (2012). The effect of insulin pump therapy on children and adolescents’ quality of life: A qualitative study. (Doctoral dissertation), University of Glasgow.
 
71.
Willig, A. L., Richardson, B. S., Agne, A., & Cherrington, A. (2014). Intuitive eating practices among African-American women living with type 2 diabetes: a qualitative study. Journal of the Academy of Nutrition and Dietetics, 114, 889–896.
 
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