Abstract
Objectives
Teens and young adults with type 1 diabetes (T1D) often demonstrate difficulty with
diabetes management, as they struggle to navigate the impact of T1D on their identities---their
self-concepts, bodies, social networks, life experiences and desired futures. Positively
incorporating T1D into identity may benefit biomedical and psychosocial outcomes.
We aimed to validate and assess psychometric properties of the Accepting Diabetes
and Personal Treatment (ADAPT) survey, a new measure of incorporation of T1D into
one’s identity.
Methods
This cross-sectional study included 165 teens and young adults (13 to 25 years of
age) with T1D (46% male, 87% Caucasian, 72% pump users, 67% on continuous glucose
monitoring [CGM], age 18.5±3.2 years, diabetes duration 10.2±5.0 years, glycated hemoglobin
[A1C] 8.5±1.3% [69±14 mmol/mol]). A1C was collected from medical records; participants
completed the ADAPT survey and validated measures of fear of hypoglycemia, diabetes
distress and quality of life. Internal consistency, reliability, validity and underlying
factor structure were assessed.
Results
The 18-item ADAPT survey demonstrated excellent internal consistency (alpha=0.90)
as well as criterion and construct validity. Greater incorporation of diabetes was
associated with male sex, pump use, CGM use, lower A1C, less fear of hypoglycemia,
less diabetes distress and improved quality of life (p<0.01 for all). Factor analysis
identified 3 main contributors to incorporation: Stigma Management, Adjustment to
Perceived Interference and Benefit-finding.
Conclusions
The ADAPT survey is a valid and reliable measure of incorporation in teens and young
adults with T1D that highlights the importance of identity in health outcomes. Diabetes
device use and factors of incorporation (Stigma Management, Adjustment to Perceived
Interference and Benefit-finding) offer targets for clinical intervention.
Résumé
Objectifs
Les adolescents et les jeunes adultes atteints du diabète de type 1 (DT1) démontrent
souvent de la difficulté à prendre en charge leur diabète, et ont du mal à composer
avec les répercussions du DT1 sur leurs identités (image de soi, corps, réseaux sociaux,
expériences de vie et situation future souhaitée). L’intégration positive du DT1 à
l’identité peut bénéficier aux résultats biomédicaux et psychosociaux. Notre objectif
était de valider et d’évaluer les propriétés psychométriques de l’enquête Accepting
Diabetes and Personal Treatment (ADAPT), une nouvelle mesure de l’intégration du DT1
à son identité.
Méthodes
Cette étude transversale comptait 165 adolescents et jeunes adultes (de 13 à 25 ans)
atteints du DT1 (46 % de sexe masculin, 87 % de Blancs, 72 % d’utilisateurs de pompes,
67 % effectuant la surveillance de la glycémie en continu [SGC], âgés de 18,5 ± 3,2
ans, durée du diabète de 10,2 ± 5,0 ans, hémoglobine glyquée [A1c] 8,5 ± 1,3 % [69
± 14 mmol/mol]). Les données sur l’A1c ont été recueillies dans les dossiers médicaux;
les participants ont rempli l’enquête ADAPT et les mesures validées de la crainte
de l’hypoglycémie, de la détresse liée au diabète et de la qualité de vie. Nous avons
évalué la cohérence interne, la fiabilité, la validité et la structure factorielle
sous-jacente.
Résultats
L’enquête ADAPT à 18 questions a démontré une excellente cohérence interne (alpha =
0,90) ainsi que des validités critérielle et conceptuelle. Nous avons associé une
plus grande intégration du diabète au sexe masculin, à l’utilisation de la pompe,
à la SGC, à une plus faible A1c, à une crainte moins importante de l’hypoglycémie,
à une détresse moins importante liée au diabète et à une meilleure qualité de vie
(p < 0,01 pour tous). L’analyse factorielle a permis de cerner les 3 principaux facteurs
qui contribuent à l’intégration : la prise en charge de la stigmatisation, l’ajustement
à l’interférence perçue et la constatation des bénéfices secondaires.
Conclusions
L’enquête ADAPT est une mesure valide et fiable de l’intégration, chez les adolescents
et les jeunes adultes atteints du DT1, qui montre l’importance de l’identité dans
les résultats cliniques. L’utilisation de dispositifs pour le diabète et les facteurs
liés à l’intégration (prise en charge de la stigmatisation, l’ajustement à l’interférence
perçue et la constatation des bénéfices secondaires) offrent des cibles d’intervention
clinique.
Keywords
Mots clés
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References
- Care of children and adolescents with type 1 diabetes: A statement of the American Diabetes Association.Diabetes Care. 2005; 28: 186-212
- Social support and diabetes management in childhood and adolescence: Influence of parents and friends.Curr Diab Rep. 2006; 6: 117-122
- Peer relations of youth with pediatric conditions and health risks: Promoting social support and healthy lifestyles.J Dev Behav Pediatr. 2002; 23: 271-280
- Attributions of adolescents with type 1 diabetes related to performing diabetes care around friends and peers: The moderating role of friend support.J Pediatr Psychol. 2007; 32: 561-570
- Current state of type 1 diabetes treatment in the U.S.: Updated data from the T1D Exchange clinic registry.Diabetes Care. 2015; 38: 971-978
- State of type 1 diabetes management and outcomes from the T1D Exchange in 2016–2018.Diabetes Technol Ther. 2019; 21: 66-72
- Identity, Youth and Crisis.W.W. Norton, New York1968
- Emerging adulthood. A theory of development from the late teens through the twenties.Am Psychol. 2000; 55: 469-480
- Type 1 diabetes in children and adolescents: A position statement by the American Diabetes Association.Diabetes Care. 2018; 41: 2026-2044
- Defining lives: Occupation as identity: An essay on competence, coherence, and the creation of meaning.Am J Occup Ther. 1999; 53: 547-558
- Self, self-concept, and identity.in: Handbook of Self and Identity. 2nd ed. Guilford Press, New York2012: 69-104
- Self-concept among youth with a chronic illness: A meta-analytic review.Health Psychol. 2013; 32: 839-848
- Redefining relationships and identity in young adults with type 1 diabetes.J Adv Nurs. 2010; 66: 128-138
- Developing a personal and social identity with type 1 diabetes during adolescence: A hypothesis generative study.Qual Health Res. 2016; 26: 672-684
- Loss of self: A fundamental form of suffering in the chronically ill.Sociol Health Illn. 1983; 5: 168-195
- Identity development, coping, and adjustment in emerging adults with a chronic illness: The sample case of type 1 diabetes.J Adolesc Health. 2008; 43: 451-458
- Illness identity in adolescents and emerging adults with type 1 diabetes: Introducing the illness identity questionnaire.Diabetes Care. 2016; 39: 757-763
- Coping skills training for youth with diabetes mellitus has long-lasting effects on metabolic control and quality of life.J Pediatr. 2000; 137: 107-113
- Living with diabetes: Normalizing the process of managing diabetes.Diabetes Educ. 2008; 34: 1004-1012
- The narrative-autobiographical approach in the group education of adolescents with diabetes: A qualitative research on its effects.Patient Educ Couns. 2010; 80: 56-63
- The body, identity, and self.Sociol Q. 1995; 36: 657-680
- Identity and treatment adherence in predominantly ethnic minority teens and young adults with type 1 diabetes.Pediatr Diabetes. 2020; 21: 53-60
- Research electronic data capture (REDCap)---a metadata-driven methodology and workflow process for providing translational research informatics support.J Biomed Inform. 2009; 42: 377-381
- Predictors of fear of hypoglycemia in adolescents with type 1 diabetes and their parents.Pediatr Diabetes. 2006; 7: 215-222
- Youth-perceived burden of type 1 diabetes: Problem Areas in Diabetes survey---Pediatric version (PAID-Peds).J Diabetes Sci Technol. 2015; 9: 1080-1085
- Validation of the WHO-5 Well-Being Index in adolescents with type 1 diabetes.Diabetes Care. 2007; 30 (2003–6)
- Illness centrality and well-being among male and female early adolescents with diabetes.J Pediatr Psychol. 2007; 32: 260-272
- Association between adherence and glycemic control in pediatric type 1 diabetes: A meta-analysis.Pediatrics. 2009; 124: e1171-e1179
- Best friend or spy: A qualitative meta-synthesis on the impact of continuous glucose monitoring on life with Type 1 diabetes.Diabet Med. 2018; 35: 409-418
- Diabetes device use in adults with type 1 diabetes: Barriers to uptake and potential intervention targets.Diabetes Care. 2017; 40: 181-187
- Cost, hassle, and on-body experience: Barriers to diabetes device use in adolescents and potential intervention targets.Diabetes Technol Ther. 2020; 22: 760-767
- Illness self-concept in Type 1 diabetes: A cross-sectional view on clinical, demographic, and psychosocial correlates.Psychol Health Med. 2015; 20: 77-86
- Doing health, doing gender: Teenagers, diabetes and asthma.Soc Sci Med. 2000; 50: 387-396
- Self-management experiences among men and women with type 2 diabetes mellitus: A qualitative analysis.BMC Fam Pract. 2012; 13: 122
- Experiencing chronic illness.in: Albrecht G. Fitzpatrick R. Scrimshaw S. The Handbook of Social Studies in Health & Medicine. Sage, London2000 (277–92)
- Stigma and its association with glycemic control and hypoglycemia in adolescents and young adults with type 1 diabetes: Cross-sectional study.J Med Internet Res. 2018; 20: e151
- Attributions of adolescents with type 1 diabetes in social situations: Relationship with expected adherence, diabetes stress, and metabolic control.Diabetes Care. 2006; 29: 818-822
- Good Days, Bad Days: The Self in Chronic Illness and Time.Rutgers University Press, New Brunswick, New Jersey1991
- Brief report: Benefit finding and identity processes in type 1 diabetes: Prospective associations throughout adolescence.J Adolesc. 2016; 49: 47-50
- The value of positive psychology for health psychology: Progress and pitfalls in examining the relation of positive phenomena to health.Ann Behav Med. 2010; 39: 4-15
- ISPAD clinical practice consensus guidelines 2018: Diabetes technologies.Pediatr Diabetes. 2018; 19: 302-325
Article info
Publication history
Published online: August 31, 2022
Accepted:
August 24,
2022
Received in revised form:
July 14,
2022
Received:
March 24,
2022
Identification
Copyright
© 2022 Canadian Diabetes Association.
