Skip to main content

Advertisement

SpringerLink
Log in

The Social Context and Illness Identity in Youth with Type 1 Diabetes: A Three-Wave Longitudinal Study

  • Empirical Research
  • Published:
Journal of Youth and Adolescence Aims and scope Submit manuscript

Abstract

Youth with type 1 diabetes are confronted with the challenging task of integrating diabetes into their identity. This integration process, referred to as illness identity, may play an important role in how youth with type 1 diabetes cope with normative and illness-specific challenges. In line with socio-ecological theorizing, the present study investigated the longitudinal interplay between illness identity and two important social contexts for youth, the parent and peer contexts. A total of 559 (54.5% female; mean age = 18.8 years) adolescents (14–17 years) and emerging adults (18–25 years) with type 1 diabetes completed questionnaires at three time-points with intervals of one year. A total of 98% of these participants had the Belgian nationality, and all of them spoke Dutch. At each time point, illness identity (i.e., acceptance, enrichment, rejection, and engulfment), peer support, extreme peer orientation, parental responsiveness, parental psychological control, and parental overprotection were self-assessed. The present findings show that overprotective parenting may lead to youth feeling engulfed by their diabetes. Further, when type 1 diabetes becomes adaptively integrated into youth’s identity, the data suggest that youth may be better prepared to engage in healthy peer relationships. Thus, the present findings show that illness identity may be affected by the social context, and in turn may have an impact on parent and peer relationships as well. In general, the present findings underscore the importance of adaptive illness integration for youth with type 1 diabetes, and further emphasize the importance of achieving a coherent identity.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  • Adachi, P., & Willoughby, T. (2015). Interpreting effect sizes when controlling for stability effects in longitudinal autoregressive models: implications for psychological science. European Journal of Developmental Psychology, 12(1), 116–128.

    Google Scholar 

  • Armsden, G. C., & Greenberg, M. T. (1987). The inventory of parent and peer attachment: Individual differences and their relationship to psychological well-being in adolescence. Journal of Youth and Adolescence, 16(5), 427–454.

    Article  PubMed  Google Scholar 

  • Arnett, J. J. (2000). Emerging adulthood: a theory of development from the late teens through the twenties. American Psychologist, 55(5), 469–480.

    PubMed  Google Scholar 

  • Asbring, P. (2001). Chronic illness—a disruption in life: Identity-transformation among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 34(3), 312–319.

    PubMed  Google Scholar 

  • Barber, B. K. (1996). Parental psychological control: revisiting a neglected construct. Child Development, 67(6), 3296–3319.

    PubMed  Google Scholar 

  • Barber, B. K., Stolz, H. E., Olsen, J. A., Collins, W. A., & Burchinal, M. (2005). Parental support, psychological control, and behavioral control: assessing relevance across time, culture, and method. Monographs of the Society for Research in Child Development, 70, 1–137.

    PubMed  Google Scholar 

  • Barry, C. M., Madsen, S. D., Nelson, L. J., Carroll, J. S., & Badger, S. (2009). Friendship and romantic relationship qualities in emerging adulthood: differential associations with identity development and achieved adulthood criteria. Journal of Adult Development, 16(4), 209–222.

    Google Scholar 

  • Berg, C. A., Butler, J. M., Osborn, P., King, G., Palmer, D. L., Butner, J., & Wiebe, D. J. (2008). Role of parental monitoring in understanding the benefits of parental acceptance on adolescent adherence and metabolic control of type 1 diabetes. Diabetes Care, 31(4), 678–683.

    PubMed  Google Scholar 

  • Berg, C. A., Butner, J., Wiebe, D. J., Lansing, A. H., Osborn, P., King, P. S., & Butler, J. M. (2017). Developmental model of parent-child coordination for self-regulation across childhood and into emerging adulthood: type 1 diabetes management as an example. Developmental Review, 46, 1–26.

    PubMed  Google Scholar 

  • Berry, D., & Willoughby, M. T. (2017). On the practical interpretability of cross-lagged panel models: rethinking a developmental workhorse. Child Development, 88(4), 1186–1206.

    PubMed  Google Scholar 

  • Beyers, W., Goossens, L., Vansant, I., & Moors, E. (2003). A structural model of autonomy in middle and late adolescence: connectedness, separation, detachment, and agency. Journal of Youth and Adolescence, 32(5), 351–365.

    Google Scholar 

  • Bollen, K. A. (1989). Structural equations with latent variables. New York, NY: Wiley.

    Google Scholar 

  • Brenning, K. M., Soenens, B., Van Petegem, S., & Kins, E. (2017). Searching for the roots of overprotective parenting in emerging adulthood: investigating the link with parental attachment representations using an actor partner interdependence model (APIM). Journal of Child and Family Studies, 26(8), 2299–2310.

    Google Scholar 

  • Bronfenbrenner, U. (1986). Ecology of the family as a context for human development: research perspectives. Developmental Psychology, 22(6), 723–742.

    Google Scholar 

  • Butler, J. M., Skinner, M., Gelfand, D., Berg, C. A., & Wiebe, D. J. (2007). Maternal parenting style and adjustment in adolescents with type I diabetes. Journal of Pediatric Psychology, 32(10), 1227–1237.

    PubMed  Google Scholar 

  • Centers for Disease Control and Prevention (2012). Diabetes public health resource: Children and diabetes. Retrieved from: http://www.cdc.gov/diabetes/projects/cda2.htm.

  • Chapman, D. W., & Carter, J. F. (1979). Translation procedures for the cross cultural use of measurement instruments. Educational Evaluation and Policy Analysis, 1(3), 71–76.

    Google Scholar 

  • Charmaz, K. (1987). Struggling for a self: Identity levels of the chronically ill. Research in the Sociology of Health Care, 6, 283–321.

    Google Scholar 

  • Commissariat, P. V., Kenowitz, J. R., Trast, J., Heptulla, R. A., & Gonzalez, J. S. (2016). Developing a personal and social identity with type 1 diabetes during adolescence: a hypothesis generative study. Qualitative Health Research, 26(5), 672–684.

    PubMed  Google Scholar 

  • Curran, P. J., & Bauer, D. J. (2011). The disaggregation of within-person and between-person effects in longitudinal models of change. Annual Review of Psychology, 62, 583–619.

    PubMed  PubMed Central  Google Scholar 

  • Daneman, D. (2006). Type 1 diabetes. The Lancet, 367(9513), 847–858.

    Google Scholar 

  • Doeselaar, L. V., Becht, A. I., Klimstra, T. A., & Meeus, W. H. J. (2018). A review and integration of three key components of identity development. European Psychologist, 23(4), 278–288.

    Google Scholar 

  • Drew, L. M., Berg, C., & Wiebe, D. J. (2010). The mediating role of extreme peer orientation in the relationships between adolescent-parent relationship and diabetes management. Journal of Family Psychology, 24(3), 299–306.

    PubMed  PubMed Central  Google Scholar 

  • Eckshtain, D., Ellis, D. A., Kolmodin, K., & Naar-King, S. (2010). The effects of parental depression and parenting practices on depressive symptoms and metabolic control in urban youth with insulin dependent diabetes. Journal of Pediatric Psychology, 35(4), 426–435.

    PubMed  Google Scholar 

  • Ellis, D. A., Templin, T. N., Podolski, C. L., Frey, M. A., Naar-King, S., & Moltz, K. (2008). The parental monitoring of diabetes care scale: development, reliability and validity of a scale to evaluate parental supervision of adolescent illness management. Journal of Adolescent Health, 42(2), 146–153.

    Google Scholar 

  • Enders, C. K. (2010). Applied missing data analysis. New York, NY: Guilford Press.

  • Enzlin, P., Mathieu, C., & Demyttenaere, K. (2002). Gender differences in the psychological adjustment to type 1 diabetes mellitus: an explorative study. Patient Education and Counseling, 48(2), 139–145.

    PubMed  Google Scholar 

  • Epkins, C. C., & Harper, S. L. (2016). Mothers’ and fathers’ parental warmth, hostility/rejection/neglect, and behavioral control: specific and unique relations with parents’ depression versus anxiety symptoms. Parenting, 16(2), 125–145.

    Google Scholar 

  • Erikson, E. (1968). Identity: youth and crisis. New York, NY: Norton.

    Google Scholar 

  • Fuligni, A. J., & Eccles, J. S. (1993). Perceived parent-child relationships and early adolescents' orientation toward peers. Developmental Psychology, 29(4), 622–632.

    Google Scholar 

  • Furman, W., & Buhrmester, D. (1992). Age and sex differences in perceptions of networks of personal relationships. Child Development, 63(1), 103–115.

    PubMed  Google Scholar 

  • Gerlsma, C., Arrindell, W. A., van der Veen, N., & Emmelkamp, P. M. G. (1991). A parental rearing style questionnaire for use with adolescents: psychometric evaluation of the EMBU-A. Personality and Individual Differences, 12(12), 1245–1253.

    Google Scholar 

  • Hains, A. A., Berlin, K. S., Davies, W. H., Smothers, M. K., Sato, A. F., & Alemzadeh, R. (2007). Attributions of adolescents with type 1 diabetes related to performing diabetes care around friends and peers: the moderating role of friend support. Journal of Pediatric Psychology, 32(5), 561–570.

    PubMed  Google Scholar 

  • Hamaker, E. L., Kuiper, R. M., & Grasman, R. P. (2015). A critique of the cross-lagged panel model. Psychological Methods, 20(1), 102–116.

    PubMed  Google Scholar 

  • Hambleton, R. K. (1994). Guidelines for adapting educational and psychological tests: a progress report. European Journal of Psychological Assessment, 10(3), 229–244.

    Google Scholar 

  • Hartup, W. W., & Stevens, N. (1999). Friendships and adaptation across the life span. Current Directions in Psychological Science, 8(3), 76–79.

    Google Scholar 

  • Helgeson, V. S., Reynolds, K. A., Snyder, P. R., Palladino, D. K., Becker, D. J., Siminerio, L., & Escobar, O. (2013). Characterizing the transition from paediatric to adult care among emerging adults with Type 1 diabetes. Diabetic Medicine, 30(5), 610–615.

    PubMed  PubMed Central  Google Scholar 

  • Hernán, M. A. (2018). The C-word: scientific euphemisms do not improve causal inference from observational data. American Journal of Public Health, 108(5), 616–619.

    PubMed  PubMed Central  Google Scholar 

  • Kerpelman, J. L., Pittman, J. F., & Lamke, L. K. (1997). Toward a microprocess perspective on adolescent identity development: an identity control theory approach. Journal of Adolescent Research, 12(3), 325–346.

    Google Scholar 

  • King, P. S., Berg, C. A., Butner, J., Butler, J. M., & Wiebe, D. J. (2014). Longitudinal trajectories of parental involvement in Type 1 diabetes and adolescents’ adherence. Health Psychology, 33(5), 424–432.

    PubMed  Google Scholar 

  • Kline, R. B. (2015). Principles and practice of structural equation modeling. New York, NY: Guilford Press.

    Google Scholar 

  • La Greca, A. M., Auslander, W. F., Greco, P., Spetter, D., Fisher, Jr., E. B., & Santiago, J. V. (1995). I get by with a little help from my family and friends: adolescents' support for diabetes care. Journal of Pediatric Psychology, 20(4), 449–476.

    PubMed  Google Scholar 

  • Lambert, V., & Keogh, D. (2015). Striving to live a normal life: a review of children and young people’s experience of feeling different when living with a long term condition. Journal of Pediatric Nursing, 30(1), 63–77.

    PubMed  Google Scholar 

  • Leventhal, H., Idler, E. L., & Leventhal, E. A. (1999). The impact of chronic illness on the self system. Rutgers Series on Self and Social Identity, 2, 185–208.

    Google Scholar 

  • Luyckx, K., Seiffge-Krenke, I., Schwartz, S. J., Goossens, L., Weets, I., Hendrieckx, C., & Groven, C. (2008). Identity development, coping, and adjustment in emerging adults with a chronic illness: the sample case of type 1 diabetes. Journal of Adolescent Health, 43(5), 451–458.

    Google Scholar 

  • Maniatis, A. K., Goehrig, S. H., Gao, D., Rewers, A., Walravens, P., & Klingensmith, G. J. (2005). Increased incidence and severity of diabetic ketoacidosis among uninsured children with newly diagnosed type 1 diabetes mellitus. Pediatric Diabetes, 6(2), 79–83.

    PubMed  Google Scholar 

  • Masselink, M., Van Roekel, E., Hankin, B. L., Keijsers, L., Lodder, G., Vanhalst, J., & Oldehinkel, A. (2018). The longitudinal association between self-esteem and depressive symptoms in adolescents: separating between-person effects from within-person effects. European Journal of Personality, 32(6), 653–671.

    PubMed  PubMed Central  Google Scholar 

  • Meeus, W. (2016). Adolescent psychosocial development: a review of longitudinal models and research. Developmental Psychology, 52(12), 1969–1993.

    PubMed  Google Scholar 

  • Mellinger, D. C. (2003). Preparing students with diabetes for life at college. Diabetes Care, 26(9), 2675–2678.

    PubMed  Google Scholar 

  • Monaghan, M., Helgeson, V., & Wiebe, D. J. (2015). Type 1 diabetes in young adulthood. Current diabetes reviews, 11(4), 239–250.

    PubMed  PubMed Central  Google Scholar 

  • Morea, J. M., Friend, R., & Bennett, R. M. (2008). Conceptualizing and measuring illness self-concept: a comparison with self-esteem and optimism in predicting fibromyalgia adjustment. Research in Nursing & Health, 31(6), 563–575.

    Google Scholar 

  • Oris, L., Rassart, J., Prikken, S., Verschueren, M., Goubert, L., Moons, P., & Luyckx, K. (2016). Illness identity in adolescents and emerging adults with type 1 diabetes: introducing the illness identity questionnaire. Diabetes Care, 39(5), 757–763.

    PubMed  Google Scholar 

  • Palladino, D. K., & Helgeson, V. S. (2012). Friends or foes? A review of peer influence on self-care and glycemic control in adolescents with type 1 diabetes. Journal of Pediatric Psychology, 37(5), 591–603.

    PubMed  PubMed Central  Google Scholar 

  • Palmer, D. L., Berg, C. A., Butler, J., Fortenberry, K., Murray, M., Lindsay, R., & Wiebe, D. J. (2009). Mothers', fathers', and children's perceptions of parental diabetes responsibility in adolescence: examining the roles of age, pubertal status, and efficacy. Journal of Pediatric Psychology, 34(2), 195–204.

    PubMed  Google Scholar 

  • Pasupathi, M. (2013). Identity development: dialogue between normative and pathological developmental approaches. Journal of Personality Disorders, 28(1), 113–120.

    Google Scholar 

  • Prikken, S., Oris, L., Rassart, J., Missotten, L. C., Weets, I., Moons, P., & Luyckx, K. (2019). Parental illness intrusiveness and youth glycaemic control in type 1 diabetes: intergenerational associations and processes. Psychology & Health, 34(4), 438–455.

    Google Scholar 

  • Prinstein, M. J., & Giletta, M. (2016). Peer relations and developmental psychopathology. In D. Cicchetti (Ed.) Developmental Psychopathology. (pp. 527–579). Oxford: John Wiley & Sons, Inc.

  • Raymaekers, K., Oris, L., Prikken, S., Moons, P., Goossens, E., Weets, I., & Luyckx, K. (2017). The role of peers for diabetes management in adolescents and emerging adults with type 1 diabetes: a longitudinal study. Diabetes Care, 40(12), 1678–1684.

    PubMed  Google Scholar 

  • Rosseel, Y. (2012). Lavaan: an R package for structural equation modeling and more. Version 0.5–12 (BETA). http://users.ugent.be/∼yrosseel/lavaan/lavaanIntroduction.pdf.

  • Schaefer, E. S. (1965). Children’s reports of parental behavior: an inventory. Child Development, 36(2), 413–424.

    PubMed  Google Scholar 

  • Schwartz, S. J., Zamboanga, B. L., Wang, W., & Olthuis, J. V. (2009). Measuring identity from an Eriksonian perspective: two sides of the same coin? Journal of Personality Assessment, 91(2), 143–154.

    PubMed  Google Scholar 

  • Silverstein, J., Klingensmith, G., Copeland, K., Plotnick, L., Kaufman, F., Laffel, L., & Clark, N. (2005). Care of children and adolescents with type 1 diabetes: a statement of the American Diabetes Association. Diabetes Care, 28(1), 186–212.

    PubMed  Google Scholar 

  • Skinner, T. C., John, M., & Hampson, S. E. (2000). Social support and personal models of diabetes as predictors of self-care and well-being: a longitudinal study of adolescents with diabetes. Journal of Pediatric Psychology, 25(4), 257–267.

    PubMed  Google Scholar 

  • Soenens, B., Vansteenkiste, M., Luyckx, K., & Goossens, L. (2006). Parenting and adolescent problem behavior: an integrated model with adolescent self-disclosure and perceived parental knowledge as intervening variables. Developmental Psychology, 42(2), 305–318.

    PubMed  Google Scholar 

  • Sparud-Lundin, C., Öhrn, I., & Danielson, E. (2010). Redefining relationships and identity in young adults with type 1 diabetes. Journal of Advanced Nursing, 66(1), 128–138.

    PubMed  Google Scholar 

  • Spencer, J. E., Cooper, H. C., & Milton, B. (2013). The lived experiences of young people (13–16 years) with type 1 diabetes mellitus and their parents—a qualitative phenomenological study. Diabetic Medicine, 30(1), 17–24.

    Google Scholar 

  • Steinberg, L., & Monahan, K. C. (2007). Age differences in resistance to peer influence. Developmental Psychology, 43(6), 1531–1543.

    PubMed  PubMed Central  Google Scholar 

  • Tilden, B., Charman, D., Sharples, J., & Fosbury, J. (2005). Identity and adherence in a diabetes patient: transformations in psychotherapy. Qualitative Health Research, 15(3), 312–324.

    PubMed  Google Scholar 

  • Tran, V., Wiebe, D. J., Fortenberry, K. T., Butler, J. M., & Berg, C. A. (2011). Benefit finding, affective reactions to diabetes stress, and diabetes management among early adolescents. Health Psychology, 30(2), 212–219.

    PubMed  PubMed Central  Google Scholar 

  • Van Petegem, S., Soenens, B., Vansteenkiste, M., & Beyers, W. (2015). Rebels with a cause? Adolescent defiance from the perspective of reactance theory and self-determination theory. Child Development, 86(3), 903–918.

    PubMed  Google Scholar 

  • Whittemore, R., Jaser, S., Chao, A., Jang, M., & Grey, M. (2012). Psychological experience of parents of children with type 1 diabetes. The Diabetes Educator, 38(4), 562–579.

  • Wiebe, D. J., Berg, C. A., Mello, D., & Kelly, C. S. (2018). Self- and social-regulation in type 1 diabetes management during late adolescence and emerging adulthood. Current Diabetes Reports, 18(5), 23.

    PubMed  Google Scholar 

  • Wiebe, D. J., Helgeson, V. S., & Berg, C. A. (2016). The social context of managing diabetes across the life span. American Psychologist, 71(7), 526–538.

    PubMed  Google Scholar 

  • Wilson, V.(2010). Students’ experiences of managing type 1 diabetes. Nursing Children and Young People, 22(10), 25–28.

    Google Scholar 

  • Wrzus, C., Hänel, M., Wagner, J., & Neyer, F. J. (2013). Social network changes and life events across the life span: a meta-analysis. Psychological Bulletin, 139(1), 53–80.

    PubMed  Google Scholar 

  • Wysocki, T., Taylor, A., Hough, B. S., Linscheid, T. R., Yeates, K. O., & Naglieri, J. A. (1996). Deviation from developmentally appropriate self-care autonomy: association with diabetes outcomes. Diabetes Care, 19(2), 119–125.

    PubMed  Google Scholar 

  • Young, M. T., Lord, J. H., Patel, N. J., Gruhn, M. A., & Jaser, S. S. (2014). Good cop, bad cop: quality of parental involvement in type 1 diabetes management in youth. Current Diabetes Reports, 14(11), 546–558.

    PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

We would like to thank Chris Groven and the staff of the Belgian Diabetes Registry for their help in collecting the data.

Authors’ Contributions

K.R. wrote the manuscript, performed the statistical analyses, and helped in coordinating the study; K.L. helped in performing the statistical analyses, contributed to the write-up of the manuscript and reviewed/edited the manuscript; L.O. and S.P. helped in coordinating the study and reviewed/edited the manuscript; I.W. helped coordinating the study; J.V., E.G., and P.M. reviewed/edited the manuscript. All authors read and approved the final manuscript.

Funding

Funding was provided through research project G.0B35.14N granted by Research Foundation Flanders (FWO) to the last author.

Data Sharing and Declaration

The datasets generated and/or analyzed during the current study are not publicly available but are available from the corresponding author on reasonable request.

Author information

Authors and Affiliations

  1. School Psychology and Development in Context, KU Leuven, Leuven, Belgium

    Koen Raymaekers, Sofie Prikken, Leen Oris & Koen Luyckx

  2. Research Foundation Flanders, Brussels, Belgium

    Koen Raymaekers, Sofie Prikken, Eva Goossens & Leen Oris

  3. Department of Developmental, Personality, and Social Psychology, Ghent University, Ghent, Belgium

    Janne Vanhalst

  4. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium

    Philip Moons & Eva Goossens

  5. Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden

    Philip Moons

  6. Department of Pediatrics and Child Health, University of Cape Town, Cape Town, South Africa

    Philip Moons

  7. Diabetes Research Center/Clinical Biology, Free University Brussels, Brussels, Belgium

    Ilse Weets

  8. UNIBS, University of the Free State, Bloemfontein, South Africa

    Koen Luyckx

Authors
  1. Koen Raymaekers
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Sofie Prikken
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Janne Vanhalst
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Philip Moons
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Eva Goossens
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Leen Oris
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Ilse Weets
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Koen Luyckx
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Koen Raymaekers.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

Ethical approval was provided by the Medical Ethics Committee and Social and Societal Ethics Committee of KU Leuven.

Informed consent

All participants were sent questionnaire bundles and informed consent forms, including a detailed briefing of the study purpose and content. All participants included in the analyses gave written consent. Parents provided written consent for youth below 18 years of age.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Raymaekers, K., Prikken, S., Vanhalst, J. et al. The Social Context and Illness Identity in Youth with Type 1 Diabetes: A Three-Wave Longitudinal Study. J Youth Adolescence 49, 449–466 (2020). https://doi.org/10.1007/s10964-019-01180-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10964-019-01180-2

Keywords

Search

Navigation