Lessons Learned from a Life with Type 1 Diabetes: Adult Perspectives

Wednesday, 24 July 2013

Donna Freeborn, PhD, FNP, CNM1
Susanne Olsen Roper, PhD2
Tina Dyches, PhD3
Barbara L. Mandleco, PhD, RN1
(1)College of Nursing, Brigham Young University, Provo, UT
(2)School of Family Life, Brigham Young University, Provo, UT
(3)Department of Counseling Psychology and Special Education, Brigham Young University, Provo, UT

Learning Objective 1: identify lessons learned by adults with type 1 diabetes.

Learning Objective 2: incorporate lessons learned from adults with type 1 diabetes into patient education for children and adolescents with type 1 diabetes and their parents.

Purpose: The study aims were to gain a better understanding of the experience of growing up and living with type 1 diabetes (T1DM) from adults who have had T1DM.

Methods: This qualitative study, using the biographical method, consisted of two in-depth interviews of adults with T1DM. The first interview allowed participants to answer the prompt “tell me about growing up and living with type 1 diabetes” in his/her own words. The second interview focused on answering the following questions about their diagnosis, challenges, self-management, family interaction, and advice for children/adolescents with T1DM and their parents. Interviews were transcribed verbatim, entered into NVivo version 9, and coded independently by two to three researchers. Participant age at diagnosis ranged from 2 years to 48 years; they had lived with T1DM for 1 to 54 years.

Results: Six major themes related to participant experiences living with T1DM emerged:  1) it’s not who you are; 2) don’t let it limit you; 3) get involved in diabetes support groups; 4) it’s going to be OK; 5) teach them, don’t scare them; 6) don’t single kids out. Each theme included pearls of advice including: don’t let it take over your life; don’t be hard on yourself; you can do anything; be independent; you are not alone; taking care of it makes it better; and, celebrate your diagnosis day.


Adults with T1DM have a perspective that children/adolescents with the disease do not have. They have lived through the challenges of diagnosis, life-style changes, childhood/adolescent experiences, and adulthood and have learned valuable lessons. Nurses and nurse practitioners who care for patients with T1DM should talk with their adult patients living with T1DM and share these insights and lessons with young patients with T1DM and their parents.