“The Logic of Care” – Parents’ perceptions of the educational process when a child is newly diagnosed with type 1 diabetes

BMC Pediatrics

Anita Lundqvist¹  Inger Hallström¹  Lisbeth Jönsson¹ 

[1] Department of Health Sciences, Lund University, Lund, Sweden

关键词: Type 1 diabetes;    Qualitative research;    Parents;    Children;    Diabetes education;   

Others  :  1170628
DOI  :  10.1186/1471-2431-12-165

 received in 2011-12-21, accepted in 2012-10-17,  发布年份 2012

【 摘 要 】

Background

The number of new cases of type 1 diabetes mellitus (T1DM) has increased substantially in recent years and it is now one of the most common long-term endocrine disorders in childhood. In Sweden the child and family are hospitalised in accordance with the national guidelines for one to two weeks at diagnosis. The purpose of this study was to describe parents’ perceptions of the educational process when their child is newly diagnosed with T1DM.

Methods

Qualitative interviews were performed in the south western part of Sweden with ten mothers and eight fathers of children, diagnosed with T1DM, at three to six months after they had received the diagnosis. The interviews were analysed using deductive content analysis and Mol’s philosophical theory.

Results

The results show that almost all parents had experienced the educational process as being satisfactory. However, most parents felt that the teaching needed to be adapted to the individual families and to help them to learn to live with diabetes in their everyday lives. Rather than merely teaching according to a fixed schedule and cramming knowledge, the education should be parent-centered and provide time for grief and shock. There should also be a greater emphasis on why certain things should be done rather than on what should be done. The routines learned at the hospital made the efforts to be good parents managing the child’s disease, and continuing to lead a normal family life, a difficult task.

Conclusions

In order to optimize the educational process for families with children newly diagnosed with T1DM an increased focus on the families’ perceptions might be helpful in that this could lead to further revelations of the educational process thus making it more understandable for the family members involved.

【 授权许可】

   
2012 Jönsson et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]The World Health Organization [WHO] (Fact sheet N°312, August 2011)http://www.who.int/mediacentre/factsheets/fs312/en/index.html webcite.
• [2]Alderson P, Sutcliffe K, Curtis K: Children as partners with adults in their medical care. Arch Dis Child 2006, 91(4):300-303.
• [3]Patterson CC, Dahlquist GG, Gyurus E, Green A, Soltesz 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.
• [4]Funnell MM, Anderson R: Empowerment and self-management of diabetes. Clinical Diabetes 2004, 22(3):123-127.
• [5]van Dam HA, van der Horst F, van den Borne B, Ryckman R, Crebolder H: Provider-patient interaction in diabetes care: effects on patient self-care and outcomes. A systematic review. Patient Educ Couns 2003, 51(1):17-28.
• [6]DCCT Research Group: The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. The Diabetes Control and Complications Trial. N Engl J Med 1993, 329(14):977-986.
• [7]Northam E, Anderson P, Adler R, Werther G, Warne G: Psychosocial and family functioning in children with insulin-dependent diabetes at diagnosis and one year later. J Pediatr Psychol 1996, 21(5):699-717.
• [8]Streisand R, Mackey ER, Elliot BM, Mednick L, Slaughter IM, Turek J, Austin A: Parental anxiety and depression associated with caring for a child newly diagnosed with type 1 diabetes: opportunities for education and counseling. Patient Educ Couns 2008, 73(2):333-338.
• [9]Swift PG: Diabetes education in children and adolescents. Pediatr Diabetes 2009, 10(Suppl 12):51-57.
• [10]Sjöblad S: Pediatric and Adolescent Diabetes", A national care program by the Swedish society for diabetology and endocrinology. Barn- och ungdomsdiabetes [In Swedish], 2. [uppdaterade och utvidgade] uppl. edn. Lund: Studentlitteratur; 2008.
• [11]Dahlqvist G: "Pediatric and Adolescent Diabetes", A national care program by the Swedish society for diabetology and endocrinology. Barn- och ungdomsdiabetes [In Swedish], 2. [uppdaterade och utvidgade] uppl. edn. Lund: Studentlitteratur; 2008.
• [12]Jonsson L, Hallstrom I, Lundqvist A: A multi-disciplinary education process related to the discharging of children from hospital when the child has been diagnosed with type 1 diabetes–a qualitative study. BMC Pediatr 2010, 10:36. BioMed Central Full Text
• [13]Potter WJ, Deborah L-D: Rethinking validity and reliability in content analysis. J Appl Commun Res 1999, 27(3):258-284.
• [14]Graneheim UH, Lundman B: Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004, 24(2):105-112.
• [15]WMA Declaration of Helsinki - Ethical Principles for Medical Research Involving Human Subjects. http://www.wma.net/en/30publications/10policies/b3/index.html webcite.
• [16]Mol A: The logic of care: health and the problem of patient choice. Abingdon, Oxon: Routledge; 2008.
• [17]Hsieh HF, Shannon SE: Three approaches to qualitative content analysis. Qual Health Res 2005, 15(9):1277-1288.
• [18]Anderson RM, Funnell MM, Butler PM, Arnold MS, Fitzgerald JT, Feste CC: Patient empowerment. Results of a randomized controlled trial. Diabetes Care 1995, 18(7):943-949.
• [19]Lange K, Sassmann H, von Schutz W, Kordonouri O, Danne T: Prerequisites for age-appropriate education in type 1 diabetes: a model programme for paediatric diabetes education in Germany. Pediatr Diabetes 2007, 8(Suppl 6):63-71.
• [20]Winkley K, Ismail K, Landau S, Eisler I: Psychological interventions to improve glycaemic control in patients with type 1 diabetes: systematic review and meta-analysis of randomised controlled trials. BMJ 2006, 333(7558):65.
• [21]American Diabetes Association: Implications of the diabetes control and complications trial. Diabetes Care 2003, 26(1):25-27.
• [22]Lundqvist A, Nilstun T: Human dignity in paediatrics: the effects of health care. Nurs Ethics 2007, 14(2):215-228.
• [23]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.
• [24]Challener J, Davies S: Audit of care of newly diagnosed children with diabetes mellitus in East Anglia. Diabet Med 1997, 14(9):792-797.
• [25]Landolt MA, Ribi K, Laimbacher J, Vollrath M, Gnehm HE, Sennhauser FH: Posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. J Pediatr Psychol 2002, 27(7):647-652.
• [26]Lowes L, Gregory JW, Lyne P: Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs 2005, 50(3):253-261.
• [27]Eiser C, Morse R: The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr 2001, 22(4):248-256.
• [28]Lincoln Y, Guba E: Naturalistic Inquiry. Beverly Hills: SAGE Publications Inc; 1985.
• [29]Polit DF, Beck CT: Nursing research: principles and methods. 7th edition. Philadelphia: Lippincott Williams & Wilkins, cop; 2004.
• [30]Kvale S, Brinkmann S: InterViews: learning the craft of qualitative research interviewing. 2nd edition. Los Angeles: Sage Publications, cop; 2009.
• [31]Dashiff CJ: Self- and dependent-care responsibility of adolescents with. J Fam Nurs 2003, 9(2):166-183.
• [32]Leonard BJ, Kratz BJ, Skay CL, Rheinberger MM: Comparison of mother-father perceptions of their child's self-management of diabetes. Issues Compr Pediatr Nurs 1997, 20(2):69-87.
• [33]Hatton DL, Canam C, Thorne S, Hughes AM: Parents' perceptions of caring for an infant or toddler with diabetes. J Adv Nurs 1995, 22(3):569-577.
• [34]Singer B, Ryff CD: Hierarchies of life histories and associated health risks. Ann N Y Acad Sci 1999, 896:96-115.
• [35]Polit D, Beck C: Essentials of nursing research: appraising evidence for nursing practice. 7th edition. Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins; 2010.