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.
DaneiGFinucaneMMLuY. 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. Lancet2011; 378: 31–40.
2.
PattersonCGuariguataLDahlquistG. Diabetes in the young – a global view and worldwide estimates of numbers of children with type 1 diabetes. Diabetes Res Clin Pract2014; 103: 161–175.
YudkinJS. Insulin for the world’s poorest countries. Lancet2000; 355: 919–921.
5.
GaleEA. Dying of diabetes. Lancet2006; 368: 1626–1628.
6.
BeranDYudkinJS. Diabetes care in sub-Saharan Africa. Lancet2006; 368: 1689–1695.
7.
DanemanD. State of the world’s children with diabetes. Pediatr Diabetes2009; 10: 120–126.
8.
MuyerMTBuntinxFMapatanoMA. Mortality of young patients with diabetes in Kinshasa, DR Congo. Diabet Med2010; 27: 405–411.
9.
GillGVYudkinJSKeenH. The insulin dilemma in resource-limited countries. A way forward?Diabetologia2011; 54: 19–24.
10.
BeranD. Developing a hierarchy of needs for Type 1 diabetes. Diabet Med2014; 31: 61–67.
11.
MarshallMCarterBRoseK. Living with type 1 diabetes: perceptions of children and their parents. J Clin Nurs2009; 18: 1703–1710.
12.
MillerS. Hearing from children who have diabetes. J Child Health Care1999; 3: 5–12.
13.
MoreiraPLDupasG. Living with diabetes: the experience as it is told by children. Rev Lat Am Emfermagem2006; 14: 25–32.
14.
HattonDLCanamCThorneS. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs1995; 22: 569–577.
15.
SmaldoneARitholzMD. Perceptions of parenting children with type 1 diabetes diagnosed in early childhood. J Pediatr Health Care2011; 25: 87–95.
16.
HapundaGAbubakarAvan de VijverF. 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 Disord2015; 15: 20–20.
17.
AbdoliSAbazariPMardanianL. Exploring diabetes type 1 related stigma. Iran J Nurs Midwifery Res2013; 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.
MarshallMN. Sampling in qualitative research. Fam Pract1996; 13: 522–525.
20.
GolafshaniN. Understanding reliability and validity in qualitative research. Qual Rep2003; 8: 597–607.
21.
HollowayI. A-Z of qualitative research in healthcare, Chichester: Blackwell Publishing, 2008.
22.
GreenJBrittenN. Qualitative research and evidence based medicine. BMJ1998; 316: 1230–1232.
MalterudK. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health2012; 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).
MajaliwaESMunubhiERamaiyaK. Survey on acute and chronic complications in children and adolescents with type 1 diabetes at Muhimbili National Hospital in Dar es Salaam, Tanzania. Diabetes Care2007; 30: 2187–2192.
36.
MakaniJMatujaWLiyomboE. Admission diagnosis of cerebral malaria in adults in an endemic area of Tanzania: implications and clinical description. QJM2003; 96: 355–362.
37.
ElaminAGhalibM. High incidence of type 1 diabetes mellitus in Sudanese children, 1995–1995. Ann Saudi Med1997; 17: 478–480.
38.
MonabekaHGMbika-CardorelleAMoyenG. Ketoacidosis in children and teenagers in Congo. Sante2003; 13: 139–141.
39.
RwizaHTSwaiABMcLartyDG. Failure to diagnose diabetic ketoacidosis in Tanzania. Diabet Med1986; 3: 181–183.
40.
VanelliMChiariGGhizzoniL. Effectiveness of a prevention program for diabetic ketoacidosis in children. An 8-year study in schools and private practices. Diabetes Care1999; 22: 7–9.
41.
GreenhalghTHelmanCChowdhuryAM. Health beliefs and folk models in British Bangladeshis: a qualitative study. BJM1998; 316: 978–983.
42.
HjelmKBardKNybergP. Religious and cultural beliefs about health and illness in women with diabetes mellitus of different origin living in Sweden. Int J Nurs Stud2003; 40: 627–643.
43.
HuntLMValenzuelaMAPughJA. Porque me toco a mi? Mexican American diabetes patients’ causal stories and their relationship to treatment behaviors. Soc Sci Med1998; 46: 959–969.
44.
DundesA. 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.
AndersonRBuryM. Living with chronic illness: the experience of patients and their families, London: Unwin Human, 1988.
47.
BeranDYudkinJS. Looking beyond the issue of access to insulin: what is needed for proper diabetes care in resource poor settings. Diabetes Res Clin Pract2010; 88: 217–221.
48.
MbanyaJC. From yesterday to tomorrow: making a difference to global diabetes. Diabetes Res Clin Pract2010; 87: 132–135.
49.
KlassenPHaugvikS. Diabetes care guide for children with type 1 diabetes in Tajikistan, Dushanbe: Operation Mercy and Life for a Child Program, 2013.
