Experiences of adolescents with Type 1 Diabetes Mellitus on treatment adherence
Van der Westhuizen, Liezel
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Type I Diabetes Mellitus (T1DM) is a major health problem and a burden for affected young individuals, as well as for society. It is among the most prevalent paediatric disorders, affecting an estimated 1.7 per 100 children and adolescents. Given the complexity of diabetes treatment regimens, it is not surprising that children, adolescents, and their families often have difficulty adhering to these regimens. Studies have found that the overall adherence rate among children and adolescents with diabetes is about 50%. It has also been found that adherence to T1DM often tends to decrease when the adolescent begins to assume most of the responsibility for managing the disease and the parents‟ role starts to decline. However, literature indicates that adolescent patients‟ adherence is poor and an important strategy to improving their metabolic control is to increase self-care. The most common age of onset for T1DM is between 10-14 years. The adolescent population is highly neglected in current research on diabetes, because the focus tends to favour children and not adolescents. It is widely recognised that glycaemic control in adolescents is complex, challenging and dependent on interconnected relationships between numerous inputs at individual, family, community and health service levels. Optimal care of adolescents with diabetes has not been subjected to rigorous scientific studies, and research results related to optimal glycaemic control are conflicting. Development and continuous evaluation of best practices pertaining to diabetes mellitus remains one of the major objectives of diabetes care, possibly allowing a delay in and/or prevention of later complications. Research indicates that adolescence is the one age group where there has been no discernible improvement in health over the last 20 years. A great number of research studies on the subject of diabetes are done globally, but less literature, especially in the South African context, can be found that focuses on and explain the experiences of adolescents with T1DM with regard to their treatment adherence. This qualitative study explored the experiences of adolescents with T1DM. A purposive sample (n=7) of young adolescents between the ages of 13 and 15 willingly participated in the research study to explore and describe their experiences with managing their treatment regimen. In-depth interviews were conducted to collect rich descriptive data, followed by participants‟ verbal reflections once a week for the duration of a month. After the in-depth interviews and weekly reflections, the researcher held a focus group interview with all the participants. Transcribed data were analysed by means of thematic analysis from which themes and subthemes were derived. The participants expressed both positive and negative emotions associated with their diabetes; they experienced a lack of understanding by significant others because of a lack of knowledge, interest or support regarding their diabetes; they mentioned that they continually need age-appropriate support and parental involvement, even though they manage diabetes through their own processes; and lastly, participants struggled with a fear of friends‟ and peers‟ perceptions. From the findings it is clear that in order to cope, the adolescents need not only medical treatment and education about diabetes (T1DM), but emotional support, supervision and repeated reinforcement to achieve effective self-management. The basic suggestion is that diabetes care for children and young people should include routine assessment of the psychological and social pressures on the adolescent and the family so that strategies can be put in place to give support and education as needed and as appropriate. The researcher also recommends that school personnel must be educated about diabetes so that they can understand the changing medical and psychosocial needs of the adolescent and can help him/her to participate fully in all the available work, sport, and leisure activities. Models of legislation and training programmes for school staff specifically addressing the needs of children with diabetes in school have been developed in a number of countries such as Greece, Germany, Italy, Poland, Spain, Sweden, the UK and the USA. These programmes should be considered as an example to other countries. These best practices can serve as a foundation for national improvement.
- Humanities