Self-care and caregiver contribution to self-care in adolescents with type 1 diabetes mellitus: a pilot cross-sectional study

Authors

  • Diletta Fabrizi Department of Medicine and Surgery, University of Milano – Bicocca, Milano, Italy
  • Irene Natta Department of Medicine and Surgery, University of Milano – Bicocca, Milano, Italy
  • Michela Luciani Department of Medicine and Surgery, University of Milano – Bicocca, Milano, Italy
  • Stefania Di Mauro Department of Medicine and Surgery, University of Milano – Bicocca, Milano, Italy
  • Paola Rebora Department of Medicine and Surgery, Centre of Biostatistics for Clinical Epidemiology, University of Milano – Bicocca, Milano, Italy
  • Davide Ausili Department of Medicine and Surgery, University of Milano – Bicocca, Milano, Italy

DOI:

https://doi.org/10.57177/idn.v15.12

Keywords:

Self-care, Type 1 Diabetes, Caregiver, self-management, Adolescence

Abstract

Background: Type 1 diabetes mellitus requires complex skills of self-care that, during adolescence, need to be adapted to continuous major changes. Therefore, adolescents could struggle in performing adequate self-care, with consequences on glycaemic control. Caregivers’ contribution to self-care could be useful for reaching health outcomes. Existing studies lacked a theoretical framework, and tools administered for measuring adolescents’ self-care and caregivers’ contribution to self-care were not theory grounded.

Aim: To describe adolescents’ self-care and caregiver contribution to self-care within the theoretical framework of the middle-range theory of self-care of chronic illness.

Methods: A cross-sectional observational study was conducted enrolling 153 adolescent-caregiver dyads. The Self-Care of Diabetes Inventory (SCODI), including self-care maintenance, monitoring and management, was administered to adolescents. The Caregiver Contribution to Self-Care of Diabetes Inventory (CC-SCODI), including caregiver contribution to self-care maintenance, monitoring and management, was administered to caregivers. We analysed the differences in caregiver contribution according to adolescents’ self-care level and the differences in caregiver characteristics according to their contribution to self-care level.

Results: Adolescents mostly obtained adequate scores for self-care maintenance (74%), monitoring (52%) and management (58%). Caregivers mostly obtained adequate scores for contribution to self-care maintenance (72%) and monitoring (52%), and almost adequate scores for contribution to self-care management (41%). Scores were consistent within the dyads for self-care monitoring and management: high caregiver contribution when adequate adolescent self-care and vice-versa (P < 0.001). Higher caregiver self-efficacy in contributing to patient self-care was associated with higher caregiver contribution to self-care maintenance (P = 0.022), monitoring (P < 0.001) and management (P < 0.001).

Conclusion: Caregivers can contribute significantly to the self-care of adolescents with type 1 diabetes. Health professionals could implement interventions aimed at improving caregivers’ contribution through enhancing caregiver self-efficacy in contributing to patient self-care. Researchers could deepen the understanding of the relationship between adolescent self-care and caregiver contribution to self-care, as well as the determinants of caregiver contribution to self-care, and its effects on health outcomes.

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References

American Diabetes Association. 13. Children and adolescents: standards of medical care in diabetes – 2021. Diabetes Care 2021; 44(Suppl 1): S180–99. doi. 10.2337/dc21-S013

International Diabetes Federation. IDF diabetes atlas, 10th ed. Brussels: IDF; 2021.

Phelan H, Lange K, Cengiz E, Gallego P, Majaliwa E, Pelicand J, et al. ISPAD clinical practice consensus guidelines 2018: diabetes education in children and adolescents. Pediatr Diabetes 2018; 19(Suppl 27): 75–83. doi. 10.1111/pedi.12762

Cameron FJ, Garvey K, Hood KK, Acerini CL, Codner E. ISPAD clinical practice consensus guidelines 2018: diabetes in adolescence. Pediatr Diabetes Oct 2018; 19: 250–61. doi. 10.1111/pedi.12702

Hamilton K, Stanton-Fay SH, Chadwick PM, Lorencatto F, De Zoysa N, Gianfrancesco C, et al. Sustained type 1 diabetes self-management: specifying the behaviours involved and their influences. Diabet Med 2021; 38(5): e14430. doi. 10.1111/dme.14548

Chen C-Y, Lo F-S, Shu S-H, Wang R-H. Pathways of emotional autonomy, problem-solving ability, self-efficacy, and self-management on the glycemic control of adolescents with type 1 diabetes: a prospective study. Res Nurs Health 2021; 44(4): 643–52. doi. 10.1002/nur.22162

Djonou C, Tankeu AT, Dehayem MY, Tcheutchoua DN, Mbanya JC, Sobngwi E. Glycemic control and correlates in a group of sub Saharan type 1 diabetes adolescents. BMC Res Notes 2019; 12(1): 1–5. doi. 10.1186/s13104-019-4054-1

Riegel B, Jaarsma T, Strömberg A. A middle-range theory of self-care of chronic illness. Adv Nurs Sci 2012; 35(3): 194–204. doi. 10.1097/ANS.0b013e318261b1ba

Riegel B, Jaarsma T, Lee CS, Strömberg A. Integrating symptoms into the middle-range theory of self-care of chronic illness. ANS Adv Nurs Sci 2019; 42(3): 206–15. doi. 10.1097/ANS.0000000000000237

Vellone E, Lorini S, Ausili D, Alvaro R, Di Mauro S, De Marinis MG, et al. Psychometric characteristics of the caregiver contribution to self-care of chronic illness inventory. J Adv Nurs 2020; 76(9): 2434–45. doi. 10.1111/jan.14448

Ausili D, Barbaranelli C, Rossi E, Rebora P, Fabrizi D, Coghi C, et al. Development and psychometric testing of a theory-based tool to measure self-care in diabetes patients: the self-care of diabetes inventory. BMC Endocr Disord 2017; 17(1): 66. doi. 10.1186/s12902-017-0218-y

Caruso R, Rebora P, Dellafiore F, Fabrizi D, Riegel B, Ausili D, et al. Clinical and socio-demographic determinants of inadequate self-care in adults with type 1 diabetes mellitus: the leading role of self-care confidence. Acta Diabetol 2019; 56(2): 151–61. doi. 10.1007/s00592-018-1259-z

Goldberg A. Parents’ representations and glycemic control among adolescents with type 1 diabetes. J Public Health 2018; 27(6): 707–12. doi. 10.1007/s10389-018-1003-8

Bouldin ED, Trivedi RB, Reiber GE, Rosland AM, Silverman JB, Krieger J, et al. Associations between having an informal caregiver, social support, and self-care among low-income adults with poorly controlled diabetes. Chronic Illn 2017; 13(4): 239–50. doi. 10.1177/1742395317690032

Vellone E, Riegel B, Alvaro R. A situation-specific theory of caregiver contributions to heart failure self-care. J Cardiovasc Nurs 2019; 34(2): 166–73. doi. 10.1097/JCN.0000000000000549

Keklik D, Bayat M, Başdaş Ö. Care burden and quality of life in mothers of children with type 1 diabetes mellitus. Int J Diabetes Dev Ctries 2020; 40(3): 431–5. doi. 10.1007/s13410-020-00799-3

Alhaidar AM, Alshehri NA, Alhussaini MA. Family support and its association with glycemic control in adolescents with type 1 diabetes mellitus in Riyadh, Saudi Arabia. J Diabetes Res. 2020; 2020: 5151604. doi. 10.1155/2020/5151604

Luo J, Guo J, Yang J, Ou X, Grey M. Parent–child relationship quality as a mediator of the association between perceived stress and diabetes self-management in adolescents with type 1 Diabetes. J Fam Nurs. 2020; 27(1): 73–82. doi: 101177/1074840720971584

Lee S-L, Tsai M-C, Chang S-C, Chen J-L, Wang R-H. Modelling individual, parental and peer factors to glycaemic control in adolescents with type 1 diabetes: a prospective study. J Adv Nurs 2020; 76(5): 1162–71. doi. 10.1111/jan.14317

Perlberg M, Katz I, Loewenthal N, Kahil N, Haim A, Chechik T, et al. The role of autonomy-supportive parenting in the competence, adherence and glycemic control of adolescents with type 1 diabetes. Diabetes Res Clin Pract 2021; 173: 108679. doi. 10.1016/j.diabres.2021.108679

Khemakhem R, Dridi Y, Hamza M, Ben Hamouda A, Khlayfia Z, Ouerda H, et al. How do parents of children with type 1 diabetes mellitus cope and how does this condition affect caregivers’ mental health? Arch Pédiatr 2020; 27(5): 265–9. doi. 10.1016/j.arcped.2020.05.001

Lewin AB, LaGreca AM, Geffken GR, Williams LB, Duke DC, Storch EA, et al. Validity and reliability of an adolescent and parent rating scale of type 1 diabetes adherence behaviors: the self-care inventory (SCI). J Pediatr Psychol 2009; 34(9): 999–1007. doi. 10.1093/jpepsy/jsp032

Papadakis JL, Shapiro JB, Evans M, Feldman MA, Weil LEG, Vesco AT, et al. Psychometric properties of the diabetes skills checklist for adolescents with type 1 diabetes and their parents. Pediatr Diabetes 2021; 22(6): 924–32. doi. 10.1111/pedi.13241

Vellone E, Riegel B, Cocchieri A, Barbaranelli C, D’Agostino F, Glaser D, et al. Validity and reliability of the caregiver contribution to self-care of heart failure index. J Cardiovasc Nurs 2013; 28(3): 245–55. doi. 10.1097/JCN.0b013e318256385e

Riegel B, Dickson VV, Faulkner KM. The situation-specific theory of heart failure self-care revised and updated. J Cardiovasc Nurs 2016; 31(3): 226–35. doi. 10.1097/JCN.0000000000000244

World Medical Association. World Medical Association declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013; 310(20): 2191–4. doi. 10.1001/jama.2013.281053

De Maria M, Fabrizi D, Luciani M, Caruso R, Di Mauro S, Riegel B, et al. Further evidence of psychometric performance of the self-care of diabetes inventory in adults with type 1 and type 2 diabetes. Ann Behav Med 2021; 56(6): 632–44. doi. 10.1093/abm/kaab088

Raykov T. Scale construction and development using structural equation modeling. In: Hoyle RH, ed. Handbook of structural equation modeling. New York: The Guilford Press; 2012, pp. 472–92.

De Maria M, Iovino P, Lorini S, Ausili D, Matarese M, Vellone E. Development and psychometric testing of the caregiver self-efficacy in contributing to patient self-care scale. Value Health 2021; 24(10): 1407–15. doi. 10.1016/j.jval.2021.05.003

Uchmanowicz I, Krzemińska S, Ausili D, Luciani M, Lisiak M. Polish adaptation of the self-care of diabetes inventory (SCODI). Patient Prefer Adherence 2020; 14: 1341–50. doi. 10.2147/PPA.S253444

Ebadi A, Ausili D, Albatineh AN, Salarvand S, Ghashlagh RG. Psychometric evaluation of the Farsi version of the self-care of diabetes inventory in Iranian patients with diabetes. Diabetes Metab Syndr Obes Targets Ther 2019; 12: 2775–84. doi. 10.2147/DMSO.S235436

Fabrizi D, Rebora P, Luciani M, Di Mauro S, Valsecchi MG, Ausili D. How do self-care maintenance, self-care monitoring, and self-care management affect glycated haemoglobin in adults with type 2 diabetes? A multicentre observational study. Endocrine 2020; 69(3): 542–52. doi. 10.1007/s12020-020-02354-w

Vellone E, D’Agostino F, Buck HG, Fida R, Spatola CF, Petruzzo A, et al. The key role of caregiver confidence in the caregiver’s contribution to self-care in adults with heart failure. Eur J Cardiovasc Nurs 2015; 14(5): 372–81. doi. 10.1177/1474515114547649

Vellone E, Biagioli V, Durante A, Buck HG, Iovino P, Tomietto M, et al. The influence of caregiver preparedness on caregiver contributions to self-care in heart failure and the mediating role of caregiver confidence. J Cardiovasc Nurs 2020; 35(3): 243–52. doi. 10.1097/JCN.0000000000000632

Bhan N, Rao N, Raj A. Gender differences in the associations between informal caregiving and wellbeing in low- and middle-income countries. J Womens Health 2020; 29(10): 1328. doi. 10.1089/jwh.2019.7769

Song Y, Nam S, Park S, Shin IS, Ku BJ. The impact of social support on self-care of patients with diabetes: what is the effect of diabetes type? Systematic review and meta-analysis. Diabetes Educ 2017; 43(4): 396–412. doi. 10.1177/0145721717712457

Montali L, Zulato E, Cornara M, Ausili D, Luciani M. Barriers and facilitators of type 1 diabetes self-care in adolescents and young adults. J Pediatr Nurs Nurs Care Child Fam 2022; 62: 136–43. doi. 10.1016/j.pedn.2021.09.014

Published

2022-11-14

How to Cite

Fabrizi, D., Natta, I., Luciani, M., Di Mauro, S., Rebora, P., & Ausili, D. (2022). Self-care and caregiver contribution to self-care in adolescents with type 1 diabetes mellitus: a pilot cross-sectional study. International Diabetes Nursing, 15. https://doi.org/10.57177/idn.v15.12

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Section

Original Articles