Diabetes Complications in Youth

Abstract

OBJECTIVE -Youth with type 1 diabetes face long-term risks of health complications of the disease. Little is known about patients' and parents' knowledge, acquisition of information, and family communication regarding these complications. This paper reports qualitative analyses of parental focus-group discussions of this topic.RESEARCH DESIGN AND METHODS -A total of 47 participants (30 mothers, 14 fathers, and 3 others) representing 33 children between the ages of 8 and 18 years with type 1 diabetes participated in 1 of 13 focus groups. Open-ended questions focused on the type and amount of information about long-term complications presented to parents by health care professionals at different time points, as well as the way that information was presented. Questions also elicited details about parent-child communication and exposure to misconceptions about diabetes complications.RESULTS -Qualitative analysis of the transcribed focus groups revealed that participants experienced significant anxiety about diabetes complications, with a shift from concern about daily management tasks to concern about long-term complications over time. Participants desired a flexible, collaborative educational approach, especially regarding the timing and type of information, relative to the child's age and duration of diabetes. Many parents wanted more sensitive communication and emotional support from health care providers. Motivating children appeared to be a particular challenge; family burnout with regard to diabetes care over time was reported. Knowledge was gained in many ways, yet misinformation was uncommon.CONCLUSIONS -Obtaining information about long-term complications is an important process that changes over the course of the disease and with the child's developmental level. More research is needed, especially regarding youth knowledge, learning, and beliefs about diabetes complications.

Awareness and knowledge of diabetes mellitus among diabetic patients in Puducherry, India

“…6 Similar findings are seen in previous studies where there is a high prevalence of diabetes among the elders. 7,8 Many patients are illiterate in our study group, as educational level is positively associated with knowledge of the disease. 9 Similar finding was seen in a study done in rural area of Chennai, which reports that the higher the educational levels, the higher the knowledge about diabetes.…”

Mapping the information-coping trajectory of young people with long term illness

“…Misinformation was reported elsewhere in the literature (Buckloh et al 2008). Buckloh et al (2008) also reported on the negative impact that a lack of information or withholding information can have leading to misunderstanding about the illness and possible maladjustment.…”

“…Buckloh et al (2008) also reported on the negative impact that a lack of information or withholding information can have leading to misunderstanding about the illness and possible maladjustment. A number of the young people reported that the lack of information and support had a negative impact on their health and wellbeing, and the ability to cope with their condition:…”

“…Decker et al (2004) identify the need to assess adolescents' information needs throughout the course of their treatment in order that healthcare professionals can develop meaningful interventions and help the young people cope. Thorne et al, (2004) identify the criticality of communicating information effectively and appropriately to help people cope with illness, with sensitivity needed in health communications (Buckloh et al, 2008).…”

“She's Trying Her Best, Even Though She Gets on My Nerves”: Diabetes and the Caregiver-Child Relationship in Jamaica

“…[8][9][10][11] At the root of tensions are the negotiation of children's autonomy as adolescents; differing opinions on each party's role; children's irritation at parents' frequent reminders, lack of knowledge, and scepticism of their ability to manage diabetes; and parents' frustration with nonadherence. 5,9,[11][12][13][14][15] These struggles have serious repercussions; conflict compromises family cohesion, adherence and control, intra-family communication, and the quality of life (QOL) and physical and psychosocial functioning of parents and children. 5,7,[16][17][18] There are limited data on Jamaican youth living with diabetes.…”