“My heart burns” – A qualitative study of perceptions and experiences of type 1 diabetes among children and youths in Tajikistan

Abstract

Aims

To explore and describe perceptions and experiences of living with type 1 Diabetes Mellitus among children/youths in Tajikistan.

Methods

Qualitative methods were employed. Participants were recruited through purposive and snowball samplings. Data were collected using a semi-structured interview guide with children/youths having diabetes, their parents as well as health professionals. Data were analyzed according to Malterud’s systematic text condensation.

Results

Children/youths with diabetes (n = 18), their parents (n = 19) and endocrinologists (n = 4) were interviewed. Families described unique stories in which “emotional stress” and a spiritual “evil eye” were perceived as possible causes of diabetes. Life-threatening complications and maltreatment preceding diagnosis of diabetes were frequent. From manifestation of diabetes onwards, families struggled with systemic and cultural obstacles, causing stigma, discrimination, high school-drop-out rates, diabetic coma, chronic complications or death of the child/youth with diabetes.

Conclusions

Results of this qualitative study highlight the severity and complexity of challenges families living with a child/youth having diabetes in this low-income country face. Efforts to improve life expectancy and life quality are strongly needed and require addressing both systemic and cultural factors in order to accomplish sustainable impact.

Keywords

Type 1 diabetes qualitative methodology low-income countries access to health care quality of life

Get full access to this article

View all access options for this article.

References

Danei

Finucane

. National, regional, and global trends in fasting plasma glucose and diabetes prevalence since 1980: systematic analysis of health examination surveys and epidemiological studies with 370 country-years and 2.7 million participants. Lancet 2011; 378: 31–40.

Patterson

Guariguata

Dahlquist

. Diabetes in the young – a global view and worldwide estimates of numbers of children with type 1 diabetes. Diabetes Res Clin Pract 2014; 103: 161–175.

International Diabetes Federation, IDF Diabetes Atlas, 6th ed. Online referencing, www.idf.org/sites/default/files/EN_6E_Atlas_Full_0.pdf (2013, accessed 26 May 2016).

Yudkin

. Insulin for the world’s poorest countries. Lancet 2000; 355: 919–921.

Gale

. Dying of diabetes. Lancet 2006; 368: 1626–1628.

Beran

Yudkin

. Diabetes care in sub-Saharan Africa. Lancet 2006; 368: 1689–1695.

Daneman

. State of the world’s children with diabetes. Pediatr Diabetes 2009; 10: 120–126.

Muyer

Buntinx

Mapatano

. Mortality of young patients with diabetes in Kinshasa, DR Congo. Diabet Med 2010; 27: 405–411.

Gill

Yudkin

Keen

. The insulin dilemma in resource-limited countries. A way forward? Diabetologia 2011; 54: 19–24.

10.

Beran

. Developing a hierarchy of needs for Type 1 diabetes. Diabet Med 2014; 31: 61–67.

11.

Marshall

Carter

Rose

. Living with type 1 diabetes: perceptions of children and their parents. J Clin Nurs 2009; 18: 1703–1710.

12.

Miller

. Hearing from children who have diabetes. J Child Health Care 1999; 3: 5–12.

13.

Moreira

Dupas

. Living with diabetes: the experience as it is told by children. Rev Lat Am Emfermagem 2006; 14: 25–32.

14.

Hatton

Canam

Thorne

. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs 1995; 22: 569–577.

15.

Smaldone

Ritholz

. Perceptions of parenting children with type 1 diabetes diagnosed in early childhood. J Pediatr Health Care 2011; 25: 87–95.

16.

Hapunda

Abubakar

van de Vijver

. Living with type 1 diabetes is challenging for Zambian adolescents: qualitative data on stress, coping with stress and quality of care and life. BMC Endocr Disord 2015; 15: 20–20.

17.

Abdoli

Abazari

Mardanian

. Exploring diabetes type 1 related stigma. Iran J Nurs Midwifery Res 2013; 18: 65–70.

18.

European Union. European community strategy paper for assistance to Central Asia for the period 2007-2013. Brussels: European Commission, 2007.

19.

Marshall

. Sampling in qualitative research. Fam Pract 1996; 13: 522–525.

20.

Golafshani

. Understanding reliability and validity in qualitative research. Qual Rep 2003; 8: 597–607.

21.

Holloway

. A-Z of qualitative research in healthcare, Chichester: Blackwell Publishing, 2008.

22.

Green

Britten

. Qualitative research and evidence based medicine. BMJ 1998; 316: 1230–1232.

23.

Tajikistan statistics summary (2002-present). World Health Organization. Online referencing, http://apps.who.int/gho/data/?theme=country&vid=19300 (2013, accessed 26 May 2016).

24.

Tajikistan country profile. World Health Organization. Online referencing, www.who.int/countries/tjk/en/ (2012, accessed 26 May 2016).

25.

The World Bank. Population ages 0-14 (% of total). Online referencing, http://search.worldbank.org/data?qterm=population%200-14&language=EN (2014, accessed 26 May 2016).

26.

Poverty headcount ratio at national poverty line (% of population). World Bank. Online referencing, http://data.worldbank.org/indicator/SI.POV.NAHC/countries (2014, accessed 26 May 2016).

27.

Human Development Index. Human Nations Development Program. Online referencing, http://hdr.undp.org/en/content/human-development-index-hdi-table (2014, accessed 26 May 2016).

28.

Khodjamurodov

Rechel

. Health systems in transition. Health Syst Transit 2010; 12: 1–154.

29.

Morse JM. Purposive sampling. SAGE research methods. Online referencing, http://srmo.sagepub.com/view/the-sage-encyclopedia-of-social-science-research-methods/n774.xml?rskey=P25AhU&row=6 (2016, accessed 26 May 2016).

30.

Morgan DL. Snowball sampling. SAGE research methods. Online referencing, http://srmo.sagepub.com/view/sage-encyc-qualitative-research-methods/n425.xml?rskey=BTeVk6&row=1 (2016, accessed 26 May 2016).

31.

Malterud

. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health 2012; 40: 795–805.

32.

The World Medical Association. World Medical Declaration of Helsinki. Ethical principles for medical research involving human subjects. Online referencing, www.wma.net/en/30publications/10policies/b3/ (2013, accessed 26 May 2016).

33.

Council for International organizations of medical Sciences (CIOMS). International Ethical Guidelines for Biomedical Research Involving Human Subjects. Online referencing, www.cioms.ch/publications/layout_guide2002.pdf (2002, accessed 26 May 2016).

34.

United Nations, Convention on the Rights of the Child. Online referencing, www.ohchr.org/en/professionalinterest/pages/crc.aspx (1990, accessed 26 May 2016).

35.

Majaliwa

Munubhi

Ramaiya

. Survey on acute and chronic complications in children and adolescents with type 1 diabetes at Muhimbili National Hospital in Dar es Salaam, Tanzania. Diabetes Care 2007; 30: 2187–2192.

36.

Makani

Matuja

Liyombo

. Admission diagnosis of cerebral malaria in adults in an endemic area of Tanzania: implications and clinical description. QJM 2003; 96: 355–362.

37.

Elamin

Ghalib

. High incidence of type 1 diabetes mellitus in Sudanese children, 1995–1995. Ann Saudi Med 1997; 17: 478–480.

38.

Monabeka

Mbika-Cardorelle

Moyen

. Ketoacidosis in children and teenagers in Congo. Sante 2003; 13: 139–141.

39.

Rwiza

Swai

McLarty

. Failure to diagnose diabetic ketoacidosis in Tanzania. Diabet Med 1986; 3: 181–183.

40.

Vanelli

Chiari

Ghizzoni

. Effectiveness of a prevention program for diabetic ketoacidosis in children. An 8-year study in schools and private practices. Diabetes Care 1999; 22: 7–9.

41.

Greenhalgh

Helman

Chowdhury

. Health beliefs and folk models in British Bangladeshis: a qualitative study. BJM 1998; 316: 978–983.

42.

Hjelm

Bard

Nyberg

. Religious and cultural beliefs about health and illness in women with diabetes mellitus of different origin living in Sweden. Int J Nurs Stud 2003; 40: 627–643.

43.

Hunt

Valenzuela

Pugh

. Porque me toco a mi? Mexican American diabetes patients’ causal stories and their relationship to treatment behaviors. Soc Sci Med 1998; 46: 959–969.

44.

Dundes

. The evil eye: a casebook, Madison: University of Wisconsin Press, 1992.

45.

Beran D. Developing a hierarchy of needs for Type 1 diabetes. PhD Thesis, University College London, UK, 2011.

46.

Anderson

Bury

. Living with chronic illness: the experience of patients and their families, London: Unwin Human, 1988.

47.

Beran

Yudkin

. Looking beyond the issue of access to insulin: what is needed for proper diabetes care in resource poor settings. Diabetes Res Clin Pract 2010; 88: 217–221.

48.

Mbanya

. From yesterday to tomorrow: making a difference to global diabetes. Diabetes Res Clin Pract 2010; 87: 132–135.

49.

Klassen

Haugvik

. Diabetes care guide for children with type 1 diabetes in Tajikistan, Dushanbe: Operation Mercy and Life for a Child Program, 2013.