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The burdens faced by parents of preschoolers with type 1 diabetes mellitus: an integrative review

  • Received : 2023.05.10
  • Accepted : 2023.06.18
  • Published : 2023.07.31

Abstract

Purpose: This study examined the literature concerning the burdens of parents of preschool-aged children diagnosed with type 1 diabetes mellitus. Methods: We employed an integrative review methodology based on Whittemore and Knafl's framework. The literature search was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines across four electronic databases: PubMed, Web of Science, the Cumulative Index to Nursing Allied Health Literature (CINAHL), and PsycINFO. Ultimately, 18 articles were included in the review. Results: The review yielded four themes: (1) parental burdens, (2) factors related to the burdens, (3) coping strategies, and (4) implications for clinical practice. Parents experienced psychological, physical, and social burdens due to the diabetes care of their children. Several factors influenced burdens, including child-related characteristics such as age, severity of diabetes, and hospitalization experience, as well as parental factors like family income, race, and residential area. Parents initially felt burdened when their child was diagnosed with type 1 diabetes, but over time, they often adapted to the situation through support and sharing of responsibilities. Parents desired education and interventions reflecting the unique characteristics of preschoolers. Conclusion: This integrative literature review revealed that parents experience numerous burdens when their child is diagnosed with diabetes. Future research should focus on developing interventions to address parents' psychological difficulties, including tracking parental psychological changes over time. Tailored nursing interventions should also be provided to parents of preschool-aged children, as opposed to the more generic nursing interventions traditionally applied across all age groups of children in clinical settings.

Keywords

Acknowledgement

This study was supported by a National Research Foundation of Korea (NRF) grant funded by the Korean government (MSIT) (No. NRF-2022R1G1A1010942).

References

  1. Winkley K, Upsher R, Stahl D, Pollard D, Kasera A, Brennan A, et al. Psychological interventions to improve self-management of type 1 and type 2 diabetes: a systematic review. Health Technology Assessment. 2020;24(28):1-232. https://doi.org/10.3310/hta24280 
  2. Rogers MAM, Rogers BS, Basu T. Prevalence of type 1 diabetes among people aged 19 and younger in the United States. Preventing Chronic Disease. 2018;15:E143. https://doi.org/10.5888/pcd15.180323 
  3. Streisand R, Monaghan M. Young children with type 1 diabetes: challenges, research, and future directions. Current Diabetes Reports. 2014;14(9):520. https://doi.org/10.1007/s11892-014-0520-2 
  4. Pierce JS, Kozikowski C, Lee JM, Wysocki T. Type 1 diabetes in very young children: a model of parent and child influences on management and outcomes. Pediatric Diabetes. 2017;18(1):17-25. https://doi.org/10.1111/pedi.12351 
  5. Park YJ. Management of obesity and diabetes mellitus in children and adolescents: staged intervention. Journal of Korean Diabetes. 2020;21(4):221-226. https://doi.org/10.4093/jkd.2020.21.4.221 
  6. Chae HW, Seo GH, Song K, Choi HS, Suh J, Kwon A, et al. Incidence and prevalence of type 1 diabetes mellitus among Korean children and adolescents between 2007 and 2017: an epidemiologic study based on a national database. Diabetes & Metabolism Journal. 2020;44(6):866-874. https://doi.org/10.4093/dmj.2020.0212 
  7. Lee J. Diagnosis and management of pediatric type 1 diabetes mellitus. Journal of the Korean Medical Association. 2021;64(6): 425-431. https://doi.org/10.5124/jkma.2021.64.6.425 
  8. World Health Organization (WHO). Diabetes [Internet]. 2022 [cited 2023 June 17]. Available from: https://www.who.int/news-room/fact-sheets/detail/diabetes 
  9. Burrack AL, Martinov T, Fife BT. T cell-mediated beta cell destruction: autoimmunity and alloimmunity in the context of type 1 diabetes. Frontiers in Endocrinology. 2017;8:343. https://doi.org/10.3389/fendo.2017.00343 
  10. Springer Medizin. [Burokratie und Fremdsteuerung lassen Arzte ausbrennen]. MMW Fortschritte der Medizin. 2017;159(7):16-17. German. https://doi.org/10.1007/s15006-017-9510-z 
  11. Baszynska-Wilk M, Wysocka-Mincewicz M, Swiercz A, lwiderska J, Marszal M, Szalecki M. Peripheral neuropathy as a complication of diabetic ketoacidosis in a child with newly diagnosed diabetes type 1: a case report. Journal of Clinical Research in Pediatric Endocrinology. 2018;10(3):289-293. https://doi.org/10.4274/jcrpe.5374 
  12. Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. Journal of Pediatric Psychology. 2017;42(8):846-860. https://doi.org/10.1093/jpepsy/jsx056 
  13. Pierce JS, Wasserman R, Enlow P, Aroian K, Lee J, Wysocki T. Benefit finding among parents of young children with type 1 diabetes. Pediatric Diabetes. 2019;20(5):652-660. https://doi.org/10.1111/pedi.12860 
  14. Qazaryan KSY, Karim SK. The clinical link of preschoolers' picky eating behavior with their growth, development, nutritional status, and physical activity in Iraq/Kurdistan region. Neurology and Neuroscience Reports. 2019;2:1-8. https://doi.org/10.15761/NNR.1000115 
  15. Cameron FJ, Northam EA, Ryan CM. The effect of type 1 diabetes on the developing brain. The Lancet. Child & Adolescent Health. 2019;3(6):427-436. https://doi.org/10.1016/S2352-4642(19)30055-0 
  16. Coshway LK, Hoffman RP. Unique challenges of type 1 diabetes in the preschool population. Current Diabetes Reviews. 2017;13(2):122-131. https://doi.org/10.2174/1573399812666151022143757 
  17. Goethals ER, Oris L, Soenens B, Berg CA, Prikken S, Van Broeck N, et al. Parenting and treatment adherence in type 1 diabetes throughout adolescence and emerging adulthood. Journal of Pediatric Psychology. 2017;42(9):922-932. https://doi.org/10.1093/jpepsy/jsx053 
  18. Bassi G, Mancinelli E, Di Riso D, Salcuni S. Parental stress, anxiety and depression symptoms associated with self-efficacy in paediatric type 1 diabetes: a literature review. International Journal of Environmental Research and Public Health. 2020;18(1):152. https://doi.org/10.3390/ijerph18010152 
  19. Cho MK, Kim MY. Influencing factors on quality of life in parents with type 1 diabetes children Crisisonomy. 2021;17(3):137-147. https://doi.org/10.14251/crisisonomy.2021.17.3.137 
  20. Kim MY, Kang HJ. The anxiety, diabetes-related distress and posttraumatic growth of parents who have child with type 1 diabetes. Journal of the Korea Academia-Industrial cooperation Society. 2017;18(7):257-268. https://doi.org/10.5762/KAIS.2017.18.7.257 
  21. 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? Archives de Pediatrie. 2020;27(5):265-269. https://doi.org/10.1016/j.arcped.2020.05.001 
  22. Abdoli S, Vora A, Smither B, Roach AD, Vora AC. I don't have the choice to burnout; experiences of parents of children with type 1 diabetes. Applied Nursing Research. 2020;54:151317. https://doi.org/10.1016/j.apnr.2020.151317 
  23. Herbert LJ, Clary L, Owen V, Monaghan M, Alvarez V, Streisand R. Relations among school/daycare functioning, fear of hypoglycaemia and quality of life in parents of young children with type 1 diabetes. Journal of Clinical Nursing. 2015;24(9-10):1199-1209. https://doi.org/10.1111/jocn.12658 
  24. Kim MY. Psychosocial experiences of individuals with type 1 diabetes and their parents. Journal of Korean Diabetes. 2021;22(1):46-50. https://doi.org/10.4093/jkd.2021.22.1.46 
  25. Lukacs A, Bettina Zagraj V, Bartkone Kovacs A, Soos A, Torok A, Barkai L. Health-related quality of life of preschool-aged children with type 1 diabetes in the context of family and maternal functioning. Journal of Child Health Care. 2022;26(1):31-41. https://doi.org/10.1177/1367493521995320 
  26. Houben J, Janssens M, Winkler C, Besser REJ, Dzygalo K, Fehn A, et al.; GPPAD Study Group. The emotional well-being of parents with children at genetic risk for type 1 diabetes before and during participation in the POInT-study. Pediatric Diabetes. 2022;23(8):1707-1716. https://doi.org/10.1111/pedi.13448 
  27. Whittemore R, Knafl K. The integrative review: updated methodology. Journal of Advanced Nursing. 2005;52(5):546-553. https://doi.org/10.1111/j.1365-2648.2005.03621.x 
  28. Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. Updating guidance for reporting systematic reviews: development of the PRISMA 2020 statement. Journal of Clinical Epidemiology. 2021;134:103-112. https://doi.org/10.1016/j.jclinepi.2021.02.003 
  29. Hockenberry MJ, Rodgers CC, Wilson D. Wong's essentials of pediatric nursing. 11th ed. Elsevier; 2021. p. 39. 
  30. Kaur N, Puria A, Kumar A, Chaudhury S, Goyal E, Singh VP. Caregiver burden among working women and homemakers taking care of psychiatric patients. Industrial Psychiatry Journal. 2021;30(Suppl 1):S166-S171. https://doi.org/10.4103/0972-6748.328809 
  31. Li Y, Wang K, Yin Y, Li Y, Li S. Relationships between family resilience, breast cancer survivors' individual resilience, and caregiver burden: a cross-sectional study. International Journal of Nursing Studies. 2018;88:79-84. https://doi.org/10.1016/j.ijnurstu.2018.08.011 
  32. Moghadam YH, Zeinaly Z, Alhani F. How mothers of a child with type 1 diabetes cope with the burden of care: a qualitative study. BMC Endocrine Disorders. 2022;22(1):129. https://doi.org/10.1186/s12902-022-01045-z 
  33. Hong QN, Fabregues S, Bartlett G, Boardman F, Cargo M, Dagenais P, et al. The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Education for Information. 2018;34(4):285-291. https://doi.org/10.3233/EFI-180221 
  34. McDonagh M, Peterson K, Raina P, Chang S, Shekelle P. Avoiding bias in selecting studies. In: Oregon Health & Science University, McMaster University, Southern California Evidencebased Practice Centers, Editors. Methods guide for effectiveness and comparative effectiveness reviews. Agency for Healthcare Research and Quality; 2013. p. 1-21. 
  35. Iversen AS, Graue M, Haugstvedt A, Raheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents' experiences. International Journal of Qualitative Studies on Health and Well-Being. 2018;13(1):1487758. https://doi.org/10.1080/17482631.2018.1487758 
  36. Chisholm V, Atkinson L, Donaldson C, Noyes K, Payne A, Kelnar C. Predictors of treatment adherence in young children with type 1 diabetes. Journal of Advanced Nursing. 2007;57(5):482-493. https://doi.org/10.1111/j.1365-2648.2006.04137.x 
  37. Nieuwesteeg AM, Hartman EE, Aanstoot HJ, van Bakel HJ, Emons WH, van Mil E, et al. The relationship between parenting stress and parent-child interaction with health outcomes in the youngest patients with type 1 diabetes (0-7 years). European Journal of Pediatrics. 2016;175(3):329-338. https://doi.org/10.1007/s00431-015-2631-4 
  38. Nieuwesteeg A, Hartman E, Emons W, van Bakel H, Aanstoot HJ, van Mil E, et al. Paediatric parenting stress in fathers and mothers of young children with type 1 diabetes: a longitudinal study. Diabetic Medicine. 2017;34(6):821-827. https://doi.org/10.1111/dme.13300 
  39. Grey M. Coping and psychosocial adjustment in mothers of young children with type 1 diabetes. Children's Health Care. 2009;38(2):91-106. https://doi.org/10.1080/02739610902813229 
  40. Harrington KR, Boyle CT, Miller KM, Hilliard ME, Anderson BJ, Van Name M, et al.; T1D Exchange Clinic Network. Management and Family burdens endorsed by parents of youth <7 years old with type 1 diabetes. Journal of Diabetes Science and Technology. 2017;11(5):980-987. https://doi.org/10.1177/1932296817721938 
  41. Herbert LJ, Monaghan M, Cogen F, Streisand R. The impact of parents' sleep quality and hypoglycemia worry on diabetes self-efficacy. Behavioral Sleep Medicine. 2015;13(4):308-323. https://doi.org/10.1080/15402002.2014.898303 
  42. Hilliard ME, Monaghan M, Cogen FR, Streisand R. Parent stress and child behaviour among young children with type 1 diabetes. Child: Care, Health and Development. 2011;37(2):224-232. https://doi.org/10.1111/j.1365-2214.2010.01162.x 
  43. Inverso H, Moore HR, Rooney K, Tully CB, Monaghan M, Hilliard ME, et al. Clinically elevated parent depressive symptoms and stress at child type 1 diabetes diagnosis: associations with parent diabetes self-efficacy at 18-months post-diagnosis. Pediatric Diabetes. 2022;23(6):809-814. https://doi.org/10.1111/pedi.13365 
  44. Limbers CA, Teasdale A. Parenting stress in fathers of children with type 1 diabetes. Family & Community Health. 2018;41(2):117-122. https://doi.org/10.1097/FCH.0000000000000185 
  45. Mednick L, Cogen F, Henderson C, Rohrbeck CA, Kitessa D, Streisand R. Hope more, worry less: hope as a potential resilience factor in mothers of very young children with type 1 diabetes. Children's Health Care. 2007;36(4):385-396. https://doi.org/10.1080/02739610701601403 
  46. Mitchell SJ, Hilliard ME, Mednick L, Henderson C, Cogen FR, Streisand R. Stress among fathers of young children with type 1 diabetes. Families, Systems & Health. 2009;27(4):314-324. https://doi.org/10.1037/a0018191 
  47. Powers SW, Byars KC, Mitchell MJ, Patton SR, Standiford DA, Dolan LM. Parent report of mealtime behavior and parenting stress in young children with type 1 diabetes and in healthy control subjects. Diabetes Care. 2002;25(2):313-318. https://doi.org/10.2337/diacare.25.2.313 
  48. Commissariat PV, Harrington KR, Whitehouse AL, Miller KM, Hilliard ME, Van Name M, et al. "I'm essentially his pancreas": parent perceptions of diabetes burden and opportunities to reduce burden in the care of children <8 years old with type 1 diabetes. Pediatric Diabetes. 2020;21(2):377-383. https://doi.org/10.1111/pedi.12956 
  49. Smaldone A, Ritholz MD. Perceptions of parenting children with type 1 diabetes diagnosed in early childhood. Journal of Pediatric Health Care. 2011;25(2):87-95. https://doi.org/10.1016/j.pedhc.2009.09.003 
  50. Patton SR, Clements MA, Marker AM, Nelson EL. Intervention to reduce hypoglycemia fear in parents of young kids using video-based telehealth (REDCHiP). Pediatric Diabetes. 2020;21(1):112-119. https://doi.org/10.1111/pedi.12934 
  51. Spielberger CD. Manual for the State-trait anxiety inventory (form Y). Consulting Psychologists Press; 1983. p. 1-36. 
  52. Cox DJ, Irvine A, Gonder-Frederick L, Nowacek G, Butterfield J. Fear of hypoglycemia: quantification, validation, and utilization. Diabetes Care. 1987;10(5):617-621. https://doi.org/10.2337/diacare.10.5.617 
  53. Streisand R, Braniecki S, Tercyak KP, Kazak AE. Childhood illness-related parenting stress: the pediatric inventory for parents. Journal of Pediatric Psychology. 2001;26(3):155-162. https://doi.org/10.1093/jpepsy/26.3.155 
  54. Abidin RR. Introduction to the special issue: the stresses of parenting. Journal of Clinical Child Psychology. 1990;19(4):298-301. https://doi.org/10.1207/s15374424jccp1904_1 
  55. Cleary PD. Subjective and objective measures of health: which is better when? Journal of Health Services Research & Policy. 1997;2(1):3-4. https://doi.org/10.1177/135581969700200102 
  56. Arghode V. Qualitative and quantitative research: paradigmatic differences. Global Education Journal. 2012;2012(4):155-163. 
  57. Bajwa H, Baghchechi M, Mujahid M, Kang Dufour MS, Langan SM, Abuabara K. Mixed evidence on the relationship between socioeconomic position and atopic dermatitis: a systematic review. Journal of the American Academy of Dermatology. 2022;86(2):399-405. https://doi.org/10.1016/j.jaad.2021.09.018 
  58. Stepanikova I, Oates GR. Dimensions of racial identity and perceived discrimination in health care. Ethnicity & Disease. 2016;26(4):501-512. https://doi.org/10.18865/ed.26.4.501 
  59. Lange K, Swift P, Pankowska E, Danne T; International Society for Pediatric and Adolescent Diabetes. ISPAD clinical practice consensus guidelines 2014. Diabetes education in children and adolescents. Pediatric Diabetes. 2014;15 Suppl 20:77-85. https://doi.org/10.1111/pedi.12187 
  60. Jeon YK. A case study on child-centered play therapy in children with childhood diabetes. Korean Journal of Play Therapy. 2022;5(2):65-96. https://doi.org/10.54880/klpta.5.2.65 
  61. Patton SR, Dolan LM, Henry R, Powers SW. Parental fear of hypoglycemia: young children treated with continuous subcutaneous insulin infusion. Pediatric Diabetes. 2007;8(6):362-368. https://doi.org/10.1111/j.1399-5448.2007.00242.x 
  62. Knafl KA, Darney BG, Gallo AM, Angst DB. Parental perceptions of the outcome and meaning of normalization. Research in Nursing & Health. 2010;33(2):87-98. https://doi.org/10.1002/nur.20367 
  63. Allen PJ, Vessey JA, Schapiro NA. Primary care of the child with a chronic condition. 5th ed. Mosby; 2010. p. 22-41. 
  64. Dall'Oglio I, Gasperini G, Carlin C, Biagioli V, Gawronski O, Spitaletta G, et al. Self-care in pediatric patients with chronic conditions: a systematic review of theoretical models. International Journal of Environmental Research and Public Health. 2021;18(7):3513. https://doi.org/10.3390/ijerph18073513 
  65. Jonsson L, Lundqvist P, Tiberg I, Hallstrom I. Type 1 diabetes - impact on children and parents at diagnosis and 1 year subsequent to the child's diagnosis. Scandinavian Journal of Caring Sciences. 2015;29(1):126-135. https://doi.org/10.1111/scs.12140