Chafe Roger, Albrechtsons Daniel, Hagerty Donna, Newhook Leigh Anne
Janeway Pediatric Research Unit, Division of Pediatrics, Faculty of Medicine, Memorial University of Newfoundland, Room 409, Janeway Hostel, 300 Prince Phillip Drive, St. John's, NL, A1B 3V6, Canada.
Memorial University of Newfoundland, St. John's, NL, Canada.
BMC Res Notes. 2015 Sep 1;8:395. doi: 10.1186/s13104-015-1358-7.
Diabetic ketoacidosis (DKA) is the most common cause of morbidity and mortality for youth with type 1 diabetes mellitus (T1DM). This article reports qualitative data from focus groups with youth and parents of youth with T1DM on the barriers that they identify to DKA prevention and resources that may aid youth better manage their diabetes.
Four focus groups were held in three communities, two rural and one urban, in the Canadian province of Newfoundland and Labrador (NL) with adolescents and parents of youth with diabetes. Open-ended questions focused on knowledge of DKA, diabetes education, personal experiences with DKA, barriers to diabetes self-management, situations which put them at risk for DKA and resources that could be developed to aid youth in preventing DKA.
There were 19 participants (14 parents and 5 youth). Participants identified factors which increased their risk of DKA as difficulty in distinguishing cases of DKA from other illnesses; variations in diabetes education received; information overload about their condition; the long period from initial diagnosis, when most education about the condition was received; and stress regarding situations where youth are not in the direct care of their parents. Participants from rural areas reported geographical isolation and lack of regular access to specialist health care personnel as additional barriers to better diabetes management.
The project identified barriers to DKA prevention for youth which were not previously identified in the medical literature, e.g., the stress associated with temporary guardians, risk of information overload at initial diagnosis and the long period from initial diagnosis when most diabetes education is received. Families from rural areas do report additional burdens, but in some cases these families have developed community supports to help offset some of these problems. Mobile and online resources, educational refreshers about DKA, concise resources for teachers and other temporary guardians, and DKA treatment kits for parents may help improve diabetes management and prevent future episodes of DKA.
糖尿病酮症酸中毒（DKA）是1型糖尿病（T1DM）青少年发病和死亡的最常见原因。本文报告了来自T1DM青少年及其父母焦点小组的定性数据，内容涉及他们所确定的DKA预防障碍以及可能有助于青少年更好管理糖尿病的资源。
在加拿大纽芬兰与拉布拉多省（NL）的三个社区（两个农村社区和一个城市社区）举行了四个焦点小组会议，参与者为青少年糖尿病患者及其父母。开放式问题聚焦于对DKA的了解、糖尿病教育、DKA个人经历、糖尿病自我管理障碍、使他们面临DKA风险的情况以及可开发用于帮助青少年预防DKA的资源。
共有19名参与者（14名家长和5名青少年）。参与者确定的增加其DKA风险的因素包括：难以区分DKA病例与其他疾病；所接受的糖尿病教育存在差异；关于自身病情的信息过载；从最初诊断开始的很长一段时间（此时接受了关于该疾病的大部分教育）；以及青少年不在父母直接照料下时的压力。农村地区的参与者报告称，地理隔离和缺乏定期接触专科医护人员是更好管理糖尿病的额外障碍。
该项目确定了青少年DKA预防的障碍，这些障碍在医学文献中此前未被发现，例如与临时监护人相关的压力、初始诊断时信息过载的风险以及从最初诊断开始很长一段时间（此时接受了大部分糖尿病教育）。农村地区的家庭确实报告了额外负担，但在某些情况下，这些家庭已发展出社区支持来帮助抵消其中一些问题。移动和在线资源、关于DKA的教育复习课程、为教师和其他临时监护人提供的简明资源以及为家长提供的DKA治疗包可能有助于改善糖尿病管理并预防未来的DKA发作。
