A systematic review of parents’ experiences of raising a child with type 1 diabetes
Keywords:type 1 diabetes, parents, children, systematic review, diabetes mellitus, qualitative research, experiences, carers
Background: There are currently 1.1 million young people estimated to have type 1 diabetes (T1D) across the world. A diagnosis of T1D impacts not only the children’s lives but also those of the parents.
Aim: To understand the experiences of parents raising a child with T1D.
Methods: For inclusion, studies had to report qualitative data on parents' experiences of raising a child with a diagnosis of T1D. Parents included mothers, fathers or any other primary caregivers. Eleven databases were systematically searched for relevant articles. Studies were quality assessed and study characteristics extracted. The data were thematically synthesised.
Results: Thirty-two studies met the inclusion criteria. Thematic synthesis yielded two analytical themes: ‘adjusting to a new reality’ and ‘navigating appropriate T1D support’. The five descriptive themes that contributed to these were ‘distressing diagnostic experience’, ‘change of life routine’, ‘enablers and barriers to support from others’, ‘reconstruction of family dynamics’ and ‘psychological impact over time’.
Conclusions: Difficulties parents encounter in support received from school and healthcare professionals are highlighted. Parents’ mental health needs should be attended to throughout T1D clinic appointments. Future research should explore fathers' experiences, as well as characteristics (such as employment status, education, relationship status and underlying mental health issues) which may affect parental experience, given the paucity of existing evidence.
Pierce J, Aroian K, Caldwell C, Ross J, Lee J, Schifano E et al. The Ups and Downs of Parenting Young Children With Type 1 Diabetes: A Crowdsourcing Study. J Pediatr Psychol. 2017;42(8):846-860. http://dx.doi.org/10.1093/jpepsy/jsx056
Anderson M, Tulloch-Reid M. “How am I gonna cope?”: Caregivers of adolescents with diabetes in Jamaica. Chronic Illn. 2018;15(4):293-305. http://dx.doi.org/10.1177/1742395318769373
da Silva PRR, Targa T, da Cruz SMG. From Diagnosis to the Unknown: Perceptions of Parents of Children and Adolescents with Diabetes Mellitus. Journal of Nursing UFPE / Revista de Enfermagem UFPE. 2017;11(3):1118–1126.
Symons J, Crawford R, Isaac D , Thompson S. “The whole day revolves around it”: Families’ experiences of living with a child with type 1 diabetes - a descriptive study. Neonatal, Paediatric and Child Health Nursing. 2015;18(1): 7–11.
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://dx.doi.org/10.1053/jpdn.2003.4
Whittemore R, Jaser S, Chao A, Jang M, Grey M. Psychological Experience of Parents of Children With Type 1 Diabetes. Diabetes Educ. 2012;38(4):562-579. http://dx.doi.org/10.1177/0145721712445216
Moher D, Liberati A, Tetzlaff J, Altman D. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6(6):2535-2535. https://dx.doi.org/10.1136/bmj.b2535
Critical Appraisal Skills Programme UK. CASP checklists [Internet]. Casp-uk.net. 2020 [cited 8 November 2020]. Available from: https://casp-uk.net/wp-content/uploads/2018/01/CASP-Qualitative-Checklist-2018.pdf
Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8(1). https://dx.doi.org/10.1186/1471-2288-8-45
Cousin KM, Hazen AR. Parenting stress among caregivers of children with chronic illness: a systematic review. J Pediatr Psychol. 2013;38(8):809-28. https://dx.doi.org/10.1093/jpepsy/jst049.
National Institute for Health and Care Excellence. Diabetes (type 1 and type 2) in children and young people: diagnosis and management [Internet]. [London]: NICE; 2015 [updated 2016 Aug; cited 2020 Nov 08]. (NICE guideline [NG18]). Available from: https://www.nice.org.uk/guidance/ng18/chapter/Patientcentred-care
Cameron FJ, Northam EA, Ambler GR, Daneman D. Routine psychological screening in youth with type 1 diabetes and their parents: a notion whose time has come? Diabetes Care. 2007;30(10):2716-2724. https://dx.doi.org/10.2337/dc07-0603
American Diabetes Association. 13. Children and Adolescents: Standards of Medical Care in Diabetes-2020. Diabetes Care. 2020; 43(1):S163-S182. http://dx.doi.org/10.2337/dc20-S013
Hoff AL, Mullins LL, Gillaspy SR, Page MC, Van Pelt JC, Chaney JM. An Intervention to Decrease Uncertainty and Distress Among Parents of Children Newly Diagnosed With Diabetes: A Pilot Study. Families, Systems, & Health, 2005;23(3):329–342. https://dx.doi.org/10.1037/1091-7522.214.171.1249
Lohan A, Morawska A, Mitchell A. A systematic review of parenting interventions for parents of children with type 1 diabetes. Child Care Health Dev. 2015;41(6):803-17. http://dx.doi.org/10.1111/cch.12278
Wysocki T, Harris MA, Greco P, et al. Randomized, controlled trial of behavior therapy for families of adolescents with insulin-dependent diabetes mellitus. J Pediatr Psychol. 2000;25(1):23–33. http://dx.doi.org/10.1093/jpepsy/25.1.23
Khandan M, Tirgari B, Abazari F, Cheraghi M A. Mothers’ Experiences of Maze Path of Type 1 Diabetes Diagnosis in Children. Ethiop J Health Sci. 2018; 28(5): 635–644.
Abolhassani S, Babaee S, Eghbali M. Mothers’ experience of having children with diabetes. Iran J Nurs Midwifery Res. 2013;18(4): 304–309.
Commissariat P, Harrington K, Whitehouse A, Miller K, Hilliard M, 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. Pediatr Diabetes. 2019;21(2):377-383. https://dx.doi.org/10.1111/pedi.12956
Haslund-Thomsen H, Hasselbalch LA, Laugesen B. Parental experiences of continuous glucose monitoring in Danish children with type 1 diabetes mellitus. J Pediatr Nurs. 2020. https://dx.doi.org/10.1016/j.pedn.2020.03.010
Povlsen L, Ringsberg KC. Learning to live with a child with diabetes--problems related to immigration and cross-cultural diabetes care. Scand J Caring Sci. 2009;23(3): 482–489. https://dx.doi.org/10.1111/j.1471-6712.2008.00644.x
Martins EMCS, de Ataíde MBC, Silva DMA, Frota MA. Experience of mothers in the care of children with type 1 diabetes. Rev Rene. 2013;14(1): 42–49.
Kratzer J. Structural barriers to coping with type 1 diabetes mellitus in Ghana: experiences of diabetic youth and their families. Ghana Med J. 2012;46(2):39–45.
Seppänen SM, Kyngäs HA, Nikkonen MJ. Coping and social support of parents with a diabetic child. Nursing & Health Sciences. 1999;1(1): 63–70. http://dx.doi.org/10.1046/j.1442-2018.1999.00009.x
Lawton J, Waugh N, Barnard KD, Noyes K, Harden J, Stephen J et al. Challenges of optimizing glycaemic control in children with Type 1 diabetes: a qualitative study of parents’ experiences and views. Diabetic Medicine. 2015;32(8):1063–1070. https://dx.doi.org/10.1111/dme.12660
Wennick A, Hallstrom I. Families’ lived experience one year after a child was diagnosed with type 1 diabetes. J Adv Nurs. 2007;60(3): 299–307. https://dx.doi.org/10.1111/j.1365-2648.2007.04411.x
Wennick A, Hallstrom I. Swedish families’ lived experience when a child is first diagnosed as having insulin-dependent diabetes mellitus - An ongoing learning process. J Fam Nurs. 2006;12(4): 368–389. https://dx.doi.org/10.1177/1074840706296724
Barone M, Savarese L, Freda MF. Living with a chronic disease: the role of maternal mediation in the meaning-making process of their children’s Type 1 Diabetes. Mediterranean Journal of Clinical Psychology. 2019;7(3). https://dx.doi.org/10.6092/2282-1619/2019.7.2187
Lowes L, Eddy D, Channon S, McNamara R, Robling M, Gregory JW et al. The Experience of Living with Type 1 Diabetes and Attending Clinic from the Perception of Children, Adolescents and Carers: Analysis of Qualitative Data from the DEPICTED Study. J Pediatr Nurs. 2015; 30(1): 54–62. https://dx.doi.org/10.1016/j.pedn.2014.09.006
Sand P, Blom MD, Forsander G, Lundin CS. Family dynamics when a child becomes chronically ill: Impact of type 1 diabetes onset in children and adolescents. Nord Psychol. 2018;70(2):97–114. https://dx.doi.org/10.1080/19012276.2017.1362990
Nurmi MA, Stieber-Roger K. Parenting Children Living With Type 1 Diabetes A Qualitative Study. Diabetes Educ. 2012;38(4):530–536. https://dx.doi.org/10.1177/0145721712446636
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://dx.doi.org/10.1016/j.pedhc.2009.09.003
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://dx.doi.org/10.1007/s10826-017-0806-5
Sullivan-Bolyai S, Rosenberg R, Bayard M. Fathers’ reflections on parenting young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2006;31(1):24–31. https://dx.doi.org/10.1097/00005721-200601000-00007
Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005;50(3):253–261. https://dx.doi.org/10.1111/j.1365-2648.2005.03388.x
Spencer JE, Cooper HC, Milton B. The lived experiences of young people (13-16 years) with Type 1 diabetes mellitus and their parents--a qualitative phenomenological study. Diabet Med. 2014;30(1):17–24. https://dx.doi.org/10.1111/dme.12021
DL H, Canam C, Thorne S, Hughes AM, Hatton DL, Canam C et al. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs, 1995;22(3): 569–577. https://dx.doi.org/10.1046/j.1365-2648.1995.22030569.x
Khandan M, Abazari F, Tirgari B, Cheraghi MA, Khandan M, Abazari F et al. Lived Experiences of Mothers with Diabetic Children from the Transfer of Caring Role. Int J Community Based Nurs Midwifery. 2018;6(1):76–88.
Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531–538. http://dx.doi.org/10.1111/j.1464-5491.2004.01193.x
Marshall M, Carter B, Rose K, Brotherton A. Living with type 1 diabetes: perceptions of children and their parents. J Clin Nurs. 2009;18(12):1703–1710. https://dx.doi.org/10.1111/j.1365-2702.2008.02737.x
Sparud-Lundin C, Hallström I, Erlandsson LK. Challenges, strategies, and gender relations among parents of children recently diagnosed with type 1 diabetes. J Fam Nurs. 2013;19(2): 249–273. https://dx.doi.org/10.1177/1074840713484386
Smith J, Nabors L, Henderson E, Kichler J, Andreone LT. Parent and Child Perceptions of Managing Childhood Diabetes. In Fortier C, Turcotte S, editors. Health Education: Challenges, Issues and Impact . Nova Science Publishers, Inc; 2010. p.229-236.
Wennick A, Lundqvist A, Hallström I. Everyday Experience of Families Three Years after Diagnosis of Type 1 Diabetes in Children: A research paper. J Pediatr Nurs. 2009;24(3):222–230. https://dx.doi.org/10.1016/j.pedn.2008.02.028
Publish & Transfer of Copyright Agreement
For the mutual benefit and protection of the Author and the Journal Owner/Publisher it is necessary that the Author provides formal written Consent to Publish and Transfer of Copyright before publication of the Work.