Living with type 1 diabetes is challenging for Zambian adolescents: qualitative data on stress, coping with stress and quality of care and life

Abstract

BackgroundPsychosocial problems are common in patients with diabetes. However, data on psychosocial issues affecting patients with diabetes in Zambia are scarce. The present study explored sources of stress, stress coping strategies, stigma and perceived quality of life and care as experienced by adolescents living with Type 1 Diabetes in Zambia.MethodsSemi-structured interviews were carried out. Three groups of participants involving adolescents with Type 1 Diabetes (n = 10), caregivers (n = 8) and health practitioners (n = 4) were interviewed. Transcripts were analyzed using a thematic approach.ResultsStress was commonly reported by adolescents mainly stemming from social, psychological and physical sources. To deal with stress, adolescents often employed different coping strategies such as adapting, accepting and avoiding among others. Both internal factors (those relating to the patients themselves) and external factors (those related to the context of the patients’) influenced the patients’ quality of health care. In addition, low quality of life was an issue among adolescents and their families. Poor diet, low socioeconomic status and lack of medicine were factors affecting quality of health care.ConclusionStress was an issue affecting adolescents; the coping strategies employed were sometimes maladaptive such as avoiding injecting themselves to escape stress. Several aspects of quality of life were suboptimal in both adolescents and their families, such as stigmatization, short life expectancy, low socioeconomic status and poor social participation. Findings show that there is an urgent need for a strong response from all stakeholders (governments, patients, organizations and companies) to improve diabetes care and living conditions for young people with type 1 diabetes living in Zambia.

A discussion paper on stigmatizing features of diabetes

“…For example, the Lin et al (2008) study on Taiwanese individuals with T2DM found that some people believe diabetes is an infectious disease, and they stigmatize people with diabetes as contagious. Hapunda et al (2015) noted that in Zambia there is a fear of getting diabetes in a social setting. Therefore, some children who participated in a study mentioned that the community perceived them as "infectious" and some of their peers would deny playing with them because they may catch diabetes (Hapunda et al, 2015).…”

“…It is estimated that, globally, 387 million people have diabetes; this number is expected to rise to 592 million by 2035 (International Diabetes Federation, n.d.). In response to a world pandemic of diabetes, it is crucial to consider that people living with diabetes are stigmatized by their illness (Abdoli, Ashktorab, Ahmadi, Parvizy, & Dunning, ; Anderson‐Lister & Treharne, ; Hapunda, Abubakar, Van de Vijver, & Pouwer, ; Kato, Takada, & Hashimoto, ; Schabert, Browne, Mosely, & Speight, ; Singh, Cinnirella, & Bradley, 2012), especially those living with T1DM (Abu Hassan et al., ; Jaacks, Liu, Ji, & Mayer‐Davis, ; Spencer, Cooper, & Milton, ; Vishwanath, ).…”

Screening and support for emotional burdens of youth with type 1 diabetes: Strategies for diabetes care providers

“…15 Depressive symptoms and diabetes distress have consistently demonstrated associations with lower engagement in T1D self-management, poorer glycemic outcomes, and lower quality of life, 16,17 and fear of hypoglycemia has mixed associations with diabetes outcomes. 15 Interpersonal diabetes-related burdens include stigma, [18][19][20] family conflict, 21,22 and insufficient parental involvement in diabetes selfmanagement, 23 which have been linked with suboptimal diabetes management and glycemic outcomes. 24,25 Some youth and families are more vulnerable to diabetes-related emotional burdens than others.…”

<b> Diabetes Mellitus na infância e adolescência: repercussões no cotidiano dos familiares / Diabetes mellitus in children and adolescents: repercussions in daily life of families

“…Estudo internacional apresenta que as famílias desenvolvem estratégias de enfrentamento da doença, sendo a religião e a espiritualidade ferramentas fundamentais para o auxílio na aceitação da nova condição crônica (14) .…”