Yeni Başlangıçlı Tip 1 Diabetes Mellitusta Annelerin Yaşadıkları Güçlükler: Fenomenolojik Bir Çalışma

Year 2024, , 120 - 128, 25.06.2024

Melike Taşdelen Baş , Nebahat Bora Güneş , Nurdan Yildirim , Semra Çetinkaya

https://doi.org/10.17049/jnursology.1431267

Abstract

Amaç: Bu çalışmada, yeni Tip 1 diyabetes mellitus (T1DM) tanısı almış çocukların annelerinin deneyimlerini incelemek, annelerin diyabet bakımı sürecindeki zorluklarını belirlemek ve uygun çözüm yollarını belirlemek amaçlanmıştır.

Yöntemler: Yeni T1DM tanısı konulmuş, okula uyum dönemi olduğundan 6-12 yaş aralığındaki çocukların anneleri çalışmaya dahil edildi. Anneler ile fenomenolojik araştırma deseni ve hermenötik fenomenolojik yaklaşım kullanılarak çevrimiçi görüşme yapıldı.

Bulgular: Annelerin T1DM tanısı almış çocuklarına ilişkin kaygıları olduğu, T1DM tanısı almış çocukların kardeşlerine yönelik kaygıları olduğu ve ek olarak psikososyal sorunlar yaşadıkları saptandı. Bu kaygı ve sorunların nedenlerinin; kısıtlamalar/kurallar, bilinmezlik, çocuğun arkadaşlarının yaklaşımları ve toplumdaki bireylerin yaklaşımları olduğu belirlendi. Annelerin süreçte destek aldıkları kaynakların; aile, arkadaşlar, sağlık profesyonelleri, okul yönetimi, okul öğretmenleri, okul hemşiresi olduğu bulundu.

Sonuç: Sonuç olarak, yeni tanı T1DM tanılı çocuğu olan annelerin; okul yönetimi ve öğretmenlerden, sağlık ekibinden, toplumsal bilinçten, psikososyal destek gruplarından ve teknolojik gelişimlerden fayda gördüğü/göreceği, bu kaynakların anne ve çocukların T1DM ile başa çıkmasını desteklemekte ve izlemdeki olumlu deneyimleri arttırmakta önemli olduğu sonucuna varıldı.

Keywords

Tip 1 Diabetes Mellitus, yeni tanı, anne, psikososyal destek

Difficulties Experienced by Mothers in Newly Diagnosed Type 1 Diabetes Mellitus: A Phenomenological Study

Abstract

Objective: The aim of this study was to explore the experiences of mothers of newly diagnosed Type 1 Diabetes Mellitus (T1DM) children, to identify the difficulties mothers face in diabetes care, and to identify appropriate solutions.

Methods: Mothers of children aged 6-12, who have been newly diagnosed with T1DM, have been included in the workforce due to the adaptation period for school. Online interviews were conducted with the mothers using a phenomenological research design and hermeneutic phenomenological approach.

Results: It was determined that the mothers had concerns about their children diagnosed with T1DM, that the children diagnosed with T1DM had concerns about their siblings, and additionally, they had psychosocial problems. The reasons for these concerns and problems are restrictions or rules, the approaches of the child's friends, and the attitudes of individuals in society. The resources that mothers receive support from in the process are family, friends, health professionals, school administration, school teachers, and a school nurse.

Conclusion: As a result, it was concluded that the school management and teachers, health team, social awareness, psychosocial support groups, and technological developments are or will benefit from them, and that these resources are important in supporting mothers and children to cope with T1DM and increasing positive experiences in follow-up.

Keywords

Type 1 diabetes mellitus, newly diagnosed, mother, psychosocial support

References

• 1. Insel RA, Dunne JL, Atkinson MA, et al. Staging presymptomatic type 1 diabetes: a scientific statement of JDRF, the Endocrine Society, and the American Diabetes Association. Diabetes Care. 2015;38(10):1964-1974. https://doi.org/10.2337/dc15-1419
• 2. Mobasseri M, Shirmohammadi M, Amiri T, Vahed N, Fard HH, Ghojazadeh M. Prevalence and incidence of type 1 diabetes in the world: a systematic review and meta-analysis. Health Promot Perspect. 2020;10(2):98-115. https://doi.org/10.34172/hpp.2020.18
• 3. Association AD. Standards of medical care in diabetes-2021 abridged for primary care providers. Clin Diabetes. 2021;39(1):14-43. https://doi.org/10.2337%2Fcd21-as01
• 4. Streisand R, Monaghan M. Young children with type 1 diabetes: Challenges, research, and future directions. Curr Diab Rep. 2014;14:520. https://doi.org/10.1007%2Fs11892-014-0520-2
• 5. Patterson CC, Dahlquist GG, Gyürüs E, Green A, Soltész G. Incidence trends for childhood type 1 diabetes in Europe during 1989–2003 and predicted new cases 2005–20: a multicentre prospective registration study. Lancet. 2009;373(9680):2027-2033. https://doi.org/10.1016/s0140-6736(09)60568-7
• 6. Rifshana F, Breheny M, Taylor JE, Ross K. The parental experience of caring for a child with type 1 diabetes. J Child Fam Stud. 2017;26(11):3226-3236. https://doi.org/10.1007/s10826-017-0806-5
• 7. Sullivan-Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Constant vigilance: Mothers' work parenting young children with type 1 diabetes. J Pediatr Nurs. 2003;18(1):21-29. https://doi.org/10.1053/jpdn.2003.4
• 8. Sullivan‐Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Mothers' experiences raising young children with type 1 diabetes. J Spec Pediatr Nurs. 2002;7(3):93-103. https://doi.org/10.1111/j.1744-6155.2002.tb00158.x
• 9. Sparud-Lundin C, Hallström I, Erlandsson L-K. Challenges, strategies, and gender relations among parents of children recently diagnosed with type 1 diabetes. J Fam Nurs. 2013;19(2):249-273. https://doi.org/10.1177/1074840713484386
• 10. 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. Int J Environ Res Public Health. 2021;18(1):152. https://doi.org/10.3390/ijerph18010152
• 11. Fornasini S, Miele F, Piras EM. The consequences of type 1 diabetes onset on family life. An integrative review. Journal of Child and Family Studies. 2020;29:1467-1483. https://doi.org/10.1007/s10826-019-01544-z
• 12. Gallegos E, Harmon KB, Lee G, Qi Y, Jewell VD. A descriptive study of the quality of life and burden of mothers of children and adolescents with type 1 diabetes. Occup Ther Health Care. 2022:1-17. https://doi.org/10.1080/07380577.2022.2038401
• 13. Markowitz JT, C Garvey K, MB Laffel L. Developmental changes in the roles of patients and families in type 1 diabetes management. Curr Diabetes Rev. 2015;11(4):231-238. http://dx.doi.org/10.2174/1573399811666150421114146
• 14. 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. J Clin Nurs. 2015;24(9-10):1199-1209. https://doi.org/10.1111/jocn.12658
• 15. Silistre ES, Hatipoğlu HU. İstanbul’daki Okullarda Çalişan Öğretmenlerin Tip 1 Diyabet Hakkindaki Genel Bilgi Durumlarinin Değerlendirilmesi: Dört Yillik Diyabet Eğitim Programinin Etkileri. Kesitsel Bir Çalişma. IAAOJ. 2019;5(2):128-136. https://dergipark.org.tr/tr/pub/iaaojh/issue/43801/509032
• 16. Shah AS, Zeitler PS, Wong J, et al. ISPAD Clinical Practice Consensus Guidelines 2022: Type 2 diabetes in children and adolescents. Pediatr Diabetes. 2022;23(7):872-902. https://doi.org/10.1111/pedi.13409
• 17. Gruhn MA, Lord JH, Jaser SS. Collaborative and Overinvolved Parenting Differentially Predict Outcomes in Adolescents With Type 1 Diabetes. Health Psychol. Mar 21 2016; https://doi.org/10.1037/hea0000349
• 18. Wu YP, Hilliard ME, Rausch J, Dolan LM, Hood KK. Family involvement with the diabetes regimen in young people: the role of adolescent depressive symptoms. Diabet Med. 2013;30(5):596-602. https://doi.org/10.1111/dme.12117
• 19. Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J Community Based Nurs Midwifery. 2018;6(1):76.
• 20. Duru N, Civilibal M, Elevli M. Quality of life and psychological screening in children with type 1 diabetes and their mothers. Exp Clin Endocrinol Diabetes. 2015:105-110. https://doi.org/10.1055/s-0035-1555938
• 21. Van Gampelaere C, Vervoort T, Luyckx K, De Paepe A, Van Aken S, Goubert L. Maternal distress in the context of their child’s type 1 diabetes: Exploring the role of adaptive maternal emotion regulation on child outcomes. Psychol Health Med. 2018;23(3):337-346. https://doi.org/10.1080/13548506.2017.1394475
• 22. Rossiter RC, Cooper JL, Marjei SI, Brownie S. Case-based insights: Arab Muslim mothers’ experiences of managing a child newly diagnosed with type 1 diabetes mellitus. SAGE Open Nurs. 2019;5:2377960819870979. https://doi.org/10.1177/2377960819870979
• 23. Costa-Cordella S, Luyten P, Cohen D, Mena F, Fonagy P. Mentalizing in mothers and children with type 1 diabetes. Dev Psychopathol. 2021;33(1):216-225. https://doi.org/10.1017/s0954579419001706
• 24. Noser AE, Dai H, Marker AM, et al. Parental depression and diabetes-specific distress after the onset of type 1 diabetes in children. Health Psychol. 2019;38(2):103. https://doi.org/10.1037/hea0000699
• 25. Tong H-J, Qiu F, Fan L. Parents' experience of caring for children with type 1 diabetes in mainland China: A qualitative study. World J Clin Cases. 2021;9(11):2478. https://doi.org/10.12998%2Fwjcc.v9.i11.2478
• 26. Smaldone A, Ritholz MD. Perceptions of parenting children with type 1 diabetes diagnosed in early childhood. J Pediatr Health Care. 2011;25(2):87-95. https://doi.org/10.1016/j.pedhc.2009.09.003
• 27. Elissa K, Bratt E-L, Axelsson ÅB, Khatib S, Sparud-Lundin C. Societal norms and conditions and their influence on daily life in children with type 1 diabetes in the West Bank in Palestine. J Pediatr Nurs. 2017;33:16-22. https://doi.org/10.1016/j.pedn.2016.12.005
• 28. Perez L, Romo LK, Bell T. Communicatively exploring uncertainty management of parents of children with type 1 diabetes. Health Commun. 2019;34(9):949-957. https://doi.org/10.1080/10410236.2018.1446249
• 29. Lindström C, Åman J, Norberg AL, Forssberg M, Anderzén-Carlsson A. “Mission Impossible”; the mothering of a child with type 1 diabetes–From the perspective of mothers experiencing burnout. Journal of Pediatric Nursing. 2017;36:149-156. https://doi.org/10.1016/j.pedn.2017.06.002
• 30. Boman Å, Povlsen L, Dahlborg‐Lyckhage E, Hanas R, Borup I. Fathers’ encounter of support from paediatric diabetes teams; the tension between general recommendations and personal experience. Health Soc Care Community. 2013;21(3):263-270. https://doi.org/10.1111/hsc.12013
• 31. Kimbell B, Lawton J, Boughton C, Hovorka R, Rankin D. Parents’ experiences of caring for a young child with type 1 diabetes: a systematic review and synthesis of qualitative evidence. BMC Pediatrics. 2021;21(1):1-13. https://doi.org/10.1186/s12887-021-02569-4
• 32. Rankin D, Harden J, Jepson R, Lawton J. Children's experiences of managing Type 1 diabetes in everyday life: a thematic synthesis of qualitative studies. Diabeti Med. 2017;34(8):1050-1060. https://doi.org/10.1111/dme.13362
• 33. Asaad M, Forde R, AlFares A, Bin Abbas B, Sturt J. Experiences and needs of Saudi mothers when a child or adolescent is diagnosed with type 1 diabetes mellitus: a qualitative study. Int J Qual Stud Health Well-being. Dec 2022;17(1):2107151. https://doi.org/10.1080/17482631.2022.2107151
• 34. Bekker CI, Deacon E, Segal D. Meaning in life experienced by parents of children living with diabetes. Health Psychol Open. 2019;6(1):2055102919832221. https://doi.org/10.1177/2055102919832221
• 35. Edge J, Acerini C, Campbell F, et al. An alternative sensor-based method for glucose monitoring in children and young people with diabetes. Arch Dis Child. 2017;102(6):543-549. https://doi.org/10.1136/archdischild-2016-311530