Top

03-03-2018 | Psychological support | Review | Article

The Experience of Partners of Adults with Type 1 Diabetes: an Integrative Review

Journal: Current Diabetes Reports

Authors: Robin Whittemore, Roberta Delvy, Margaret M. McCarthy

Abstract

Purpose of Review

The purpose of this review was to synthesize the research on the experience of partners living with adults with type 1 diabetes (T1D).

Recent Findings

Eleven studies were included in the review. Three themes on the experience of living with a person with T1D were identified: the undercurrent of hypoglycemia, partners’ involvement in diabetes care, and the impact on partners’ lives. Due to considerable fear of hypoglycemia, partners had pervasive and deliberate ways in which they made attempts to minimize hypoglycemia in the person with diabetes and its cascade to a health emergency. As a result, partners of adults with T1D experienced considerable distress and disrupted lives. Partners also expressed a need for more support from family, friends, and health professionals.

Summary

Research is needed on the partner experience across the lifespan and the specific supportive services they need in order to optimize their health outcomes.

Type 1 Diabetes Facts. Juvenile Diabetes Research Foundation website. http://www.jdrf.org/about/what-is-t1d/facts/. Accessed November 27 2017.

Benjamin EJ, Blaha MJ, Chiuve SE, Cushman M, Das SR, Deo R, et al. Heart Disease and Stroke Statistics-2017 Update: a report from the American Heart Association. Circulation. 2017;135(10):e146–603. https://doi.org/10.1161/CIR.0000000000000485.PubMedCrossRefPubMedCentral

Snell-Bergeon JK, Nadeau K. Cardiovascular disease risk in young people with type 1 diabetes. J Cardiovasc Transl Res. 2012;5(4):446–62. https://doi.org/10.1007/s12265-012-9363-x.PubMedCrossRef

Secrest AM, Becker DJ, Kelsey SF, Laporte RE, Orchard TJ. Cause-specific mortality trends in a large population-based cohort with long-standing childhood-onset type 1 diabetes. Diabetes. 2010;59(12):3216–22. https://doi.org/10.2337/db10-0862.PubMedCrossRefPubMedCentral

Wong ND, Zhao Y, Patel R, Patao C, Malik S, Bertoni AG, et al. Cardiovascular risk factor targets and cardiovascular disease event risk in diabetes: a pooling project of the atherosclerosis risk in communities study, multi-ethnic study of atherosclerosis, and Jackson heart study. Diabetes Care. 2016;39(5):668–76. https://doi.org/10.2337/dc15-2439.PubMedCrossRefPubMedCentral

Livingstone SJ, Levin D, Looker HC, Lindsay RS, Wild SH, Joss N, et al. Estimated life expectancy in a Scottish cohort with type 1 diabetes, 2008-2010. JAMA. 2015;313(1):37–44. https://doi.org/10.1001/jama.2014.16425.PubMedCrossRefPubMedCentral

McCarthy MM, Whittemore R, Grey M. Physical activity in adults with type 1 diabetes. Diabetes Educ. 2016;42(1):108–15. https://doi.org/10.1177/0145721715620021.PubMedCrossRef

Nefs G, Bevelander S, Hendrieckx C, Bot M, Ruige J, Speight J, et al. Fear of hypoglycaemia in adults with type 1 diabetes: results from diabetes MILES—the Netherlands. Diabet Med. 2015;32(10):1289–96. https://doi.org/10.1111/dme.12739.PubMedCrossRef

Trief PM, Xing D, Foster NC, Maahs DM, Kittelsrud JM, Olson BA, et al. Depression in adults in the T1D exchange clinic registry. Diabetes Care. 2014;37(6):1563–72. https://doi.org/10.2337/dc13-1867.PubMedCrossRef

10.

Marathe PH, Gao HX, Close KL. American Diabetes Association standards of medical Care in diabetes 2017. J Diabetes. 2017;9(4):320–4. https://doi.org/10.1111/1753-0407.12524.PubMedCrossRef

11.

Balfe M, Brugha R, Smith D, Sreenan S, Doyle F, Conroy R. Why do young adults with type 1 diabetes find it difficult to manage diabetes in the workplace? Health Place. 2014;26:180–7. https://doi.org/10.1016/j.healthplace.2013.12.016.PubMedCrossRef

12.

Balfe M, Doyle F, Smith D, Sreenan S, Brugha R, Hevey D, et al. What’s distressing about having type 1 diabetes? A qualitative study of young adults’ perspectives. BMC Endocr Disord. 2013;13:25. https://doi.org/10.1186/1472-6823-13-25.PubMedCrossRefPubMedCentral

13.

Miller KM, Foster NC, Beck RW, Bergenstal RM, DuBose SN, DiMeglio LA, et al. Current state of type 1 diabetes treatment in the U.S.: updated data from the T1D exchange clinic registry. Diabetes Care. 2015;38(6):971–8. https://doi.org/10.2337/dc15-0078.PubMedCrossRef

14.

Nielsen HB, Ovesen LL, Mortensen LH, Lau CJ, Joensen LE. Type 1 diabetes, quality of life, occupational status and education level—a comparative population-based study. Diabetes Res Clin Pract. 2016;121:62–8. https://doi.org/10.1016/j.diabres.2016.08.021.PubMedCrossRef

15.

Chaytor NS. Cognition in adults and older adults with type 1 diabetes: chicken or egg? Diabetes Spectr. 2016;29(4):219–24. https://doi.org/10.2337/ds16-0050.PubMedCrossRefPubMedCentral

16.

Dhaliwal R, Weinstock RS. Management of type 1 diabetes in older adults. Diabetes Spectr. 2014;27(1):9–20. https://doi.org/10.2337/diaspect.27.1.9.PubMedCrossRefPubMedCentral

17.

DuBose SN, Weinstock RS, Beck RW, Peters AL, Aleppo G, Bergenstal RM, et al. Hypoglycemia in older adults with type 1 diabetes. Diabetes Technol Ther. 2016;18(12):765–71. https://doi.org/10.1089/dia.2016.0268.PubMedCrossRef

18.

McCrimmon RJ, Sherwin RS. Hypoglycemia in type 1 diabetes. Diabetes. 2010;59(10):2333–9. https://doi.org/10.2337/db10-0103.PubMedCrossRefPubMedCentral

19.

Weinstock RS, DuBose SN, Bergenstal RM, Chaytor NS, Peterson C, Olson BA, et al. Risk factors associated with severe hypoglycemia in older adults with type 1 diabetes. Diabetes Care. 2016;39(4):603–10. https://doi.org/10.2337/dc15-1426.PubMedCrossRef

20.

Martyn-Nemeth P, Quinn L, Penckofer S, Park C, Hofer V, Burke L. Fear of hypoglycemia: influence on glycemic variability and self-management behavior in young adults with type 1 diabetes. J Diabetes Complicat. 2017;31(4):735–41. https://doi.org/10.1016/j.jdiacomp.2016.12.015.PubMedCrossRef

21.

King J, Overland J, Fisher M, White K. Severe hypoglycemia and the role of the significant other: expert, sentry, and protector. Diabetes Educ. 2015;41(6):698–705. https://doi.org/10.1177/0145721715606223.PubMedCrossRef

22.

Jull J, Witteman HO, Ferne J, Yoganathan M, Stacey D. Adult-onset type 1 diabetes: a qualitative study of decision-making needs. Can J Diabetes. 2016;40(2):164–9. https://doi.org/10.1016/j.jcjd.2015.09.080.PubMedCrossRef

23.

Whittemore R, Jaser S, Chao A, Jang M, Grey M. Psychological experience of parents of children with type 1 diabetes: a systematic mixed-studies review. Diabetes Educ. 2012;38(4):562–79. https://doi.org/10.1177/0145721712445216.PubMedCrossRefPubMedCentral

24.

King PS, Berg CA, Butner J, Butler JM, Wiebe DJ. Longitudinal trajectories of parental involvement in type 1 diabetes and adolescents’ adherence. Health Psychol. 2014;33(5):424–32. https://doi.org/10.1037/a0032804.PubMedCrossRef

25.

Joseph NT, Kamarck TW, Muldoon MF, Manuck SB. Daily marital interaction quality and carotid artery intima-medial thickness in healthy middle-aged adults. Psychosom Med. 2014;76(5):347–54. https://doi.org/10.1097/PSY.0000000000000071.PubMedCrossRefPubMedCentral

26.

Joensen LE, Almdal TP, Willaing I. Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes. Prim Care Diabetes. 2016;10(1):41–50. https://doi.org/10.1016/j.pcd.2015.06.007.PubMedCrossRef

27.

Joensen LE, Almdal TP, Willaing I. Type 1 diabetes and living without a partner: psychological and social aspects, self-management behaviour, and glycaemic control. Diabetes Res Clin Pract. 2013;101(3):278–85. https://doi.org/10.1016/j.diabres.2013.07.001.PubMedCrossRef

28.

Trief PM, Wade MJ, Britton KD, Weinstock RS. A prospective analysis of marital relationship factors and quality of life in diabetes. Diabetes Care. 2002;25(7):1154–8.PubMedCrossRef

29.

Trief PM, Himes CL, Orendorff R, Weinstock RS. The marital relationship and psychosocial adaptation and glycemic control of individuals with diabetes. Diabetes Care. 2001;24(8):1384–9.PubMedCrossRef

30.

Schokker MC, Stuive I, Bouma J, Keers JC, Links TP, Wolffenbuttel BH, et al. Support behavior and relationship satisfaction in couples dealing with diabetes: main and moderating effects. J Fam Psychol. 2010;24(5):578–86. https://doi.org/10.1037/a0021009.PubMedCrossRef

31.

Hagedoorn M, Keers JC, Links TP, Bouma J, Ter Maaten JC, Sanderman R. Improving self-management in insulin-treated adults participating in diabetes education. The role of overprotection by the partner. Diabet Med. 2006;23(3):271–7. https://doi.org/10.1111/j.1464-5491.2006.01794.x.PubMedCrossRef

32.

Trief PM, Jiang Y, Beck R, Huckfeldt PJ, Knight T, Miller KM, et al. Adults with type 1 diabetes: partner relationships and outcomes. J Health Psychol. 2017;22(4):446–56. https://doi.org/10.1177/1359105315605654.PubMedCrossRef

33.

Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546–53. https://doi.org/10.1111/j.1365-2648.2005.03621.x.PubMedCrossRef

34.

CASP Qualitative Checklist. Critical Appraisal Skills Programme. http://docs.wixstatic.com/ugd/dded87_25658615020e427da194a325e7773d42.pdf. Accessed November 27 2017.

35.

Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies. National Heart, Lung, and Blood Institute. https://www.nhlbi.nih.gov/health-pro/guidelines/in-develop/cardiovascular-risk-reduction/tools/cohort. Accessed November 27 2017.

36.

Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15(3):398–405. https://doi.org/10.1111/nhs.12048.PubMedCrossRef

37.

Moher D, Liberati A, Tetzlaff J, Altman DG, Group P. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6(7):e1000097. https://doi.org/10.1371/journal.pmed.1000097.PubMedCrossRefPubMedCentral

38.

Rajaram SS. Experience of hypoglycemia among insulin dependent diabetics and its impact on the family. Sociology of Health & Illness. 1997;19(3):281–96. https://doi.org/10.1111/j.1467-9566.1997.tb00020.x.CrossRef

39.

Lawton J, Rankin D, Elliott J, Heller SR, Rogers HA, De Zoysa N, et al. Experiences, views, and support needs of family members of people with hypoglycemia unawareness: interview study. Diabetes Care. 2014;37(1):109–15. https://doi.org/10.2337/dc13-1154.PubMedCrossRef

40.

Trief PM, Sandberg JG, Dimmock JA, Forken PJ, Weinstock RS. Personal and relationship challenges of adults with type 1 diabetes: a qualitative focus group study. Diabetes Care. 2013;36(9):2483–8. https://doi.org/10.2337/dc12-1718.PubMedCrossRefPubMedCentral

41.

• Polonsky WH, Fisher L, Hessler D, Johnson N. Emotional distress in the partners of type 1 diabetes adults: worries about hypoglycemia and other key concerns. Diabetes Technol Ther. 2016;18(5):292–7. https://doi.org/10.1089/dia.2015.0451. This study developed and evaluated a diabetes distress scale specific for partners of adults with T1D. PubMedCrossRef

42.

Morris M, Parker L, Booker S, Johnson A. Partners’ experiences of living with someone with type 1 diabetes. J Diabetes Nursing. 2006;10(5):194–8.

43.

Stahl M, Berger W, Schaechinger H, Cox DJ. Spouse’s worries concerning diabetic partner’s possible hypoglycaemia. Diabet Med. 1998;15(7):619–20. https://doi.org/10.1002/(SICI)1096-9136(199807)15:7<619::AID-DIA616>3.0.CO;2-1.PubMedCrossRef

44.

Gonder-Frederick L, Cox D, Kovatchev B, Julian D, Clarke W. The psychosocial impact of severe hypoglycemic episodes on spouses of patients with IDDM. Diabetes Care. 1997;20(10):1543–6.PubMedCrossRef

45.

Jørgensen HV, Pedersen-Bjergaard U, Rasmussen ÅK, Borch-Johnsen K. The impact of severe hypoglycemia and impaired awareness of hypoglycemia on relatives of patients with type 1 diabetes. Diabetes Care. 2003;26(4):1106–9.PubMedCrossRef

46.

Ritholz MD, Beste M, Edwards SS, Beverly EA, Atakov-Castillo A, Wolpert HA. Impact of continuous glucose monitoring on diabetes management and marital relationships of adults with type 1 diabetes and their spouses: a qualitative study. Diabet Med. 2014;31(1):47–54. https://doi.org/10.1111/dme.12276.PubMedCrossRef

47.

Barnard K, Crabtree V, Adolfsson P, Davies M, Kerr D, Kraus A, et al. Impact of type 1 diabetes technology on family members/significant others of people with diabetes. J Diabetes Sci Technol. 2016;10(4):824–30. https://doi.org/10.1177/1932296816645365.PubMedCrossRefPubMedCentral

48.

Fisher L, Hessler D, Polonsky W, Strycker L, Masharani U, Peters A. Diabetes distress in adults with type 1 diabetes: prevalence, incidence and change over time. J Diabetes Complicat. 2016;30(6):1123–8. https://doi.org/10.1016/j.jdiacomp.2016.03.032.PubMedCrossRefPubMedCentral

49.

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):21–9. https://doi.org/10.1053/jpdn.2003.4.PubMedCrossRef

50.

• Young-Hyman D, de Groot M, Hill-Briggs F, Gonzalez JS, Hood K, Peyrot M. Psychosocial care for people with diabetes: a position statement of the American Diabetes Association. Diabetes Care. 2016;39(12):2126–40. https://doi.org/10.2337/dc16-2053. This position statement paper from the ADA provides recommendations for the psychosocial care for PWD (both T1D and T2D) and emphasizes the role of family support in diabetes care. PubMedCrossRefPubMedCentral

51.

Anderson BJ. Diabetes self-care: lessons from research on the family and broader contexts. Curr Diabetes Rep. 2003;3(2):134–40. https://doi.org/10.1007/s11892-003-0037-6.CrossRef

52.

Rintala TM, Jaatinen P, Paavilainen E, Astedt-Kurki P. Interrelation between adult persons with diabetes and their family: a systematic review of the literature. J Fam Nurs. 2013;19(1):3–28. https://doi.org/10.1177/1074840712471899.PubMedCrossRef

53.

13. Management of Diabetes in Pregnancy. Diabetes Care. 2017;40(Supplement 1):S114-S9. doi:https://doi.org/10.2337/dc17-S016.

54.

Juvenile Diabetes Research Foundation Continuous Glucose Monitoring Study Group, Bode B, Beck RW, Xing D, Gilliam L, Hirsch I, et al. Sustained benefit of continuous glucose monitoring on A1C, glucose profiles, and hypoglycemia in adults with type 1 diabetes. Diabetes Care. 2009;32(11):2047–9. https://doi.org/10.2337/dc09-0846.CrossRef

55.

Rickels MR, Peleckis AJ, Dalton-Bakes C, Naji JR, Ran NA, Nguyen H-L et al. Continuous glucose monitoring for hypoglycemia avoidance and glucose counterregulation in long standing type 1 diabetes.J Clin Endocrinol Metab. 2017:jc.2017–01516-jc.2017-. doi:https://doi.org/10.1210/jc.2017-01516.

56.

6. Glycemic Targets. Diabetes Care. 2017;40(Supplement 1):S48-S56. doi:https://doi.org/10.2337/dc17-S009.

57.

Bailey TS, Grunberger G, Bode BW, Handelsman Y, Hirsch IB, Jovanovič L, et al. American Association of Clinical Endocrinologists and American College of Endocrinology 2016 Outpatient Glucose Monitoring Consensus Statement. Endocr Pract. 2016;22(2):231–61. https://doi.org/10.4158/ep151124.cs.PubMedCrossRef

Be confident that your patient care is up to date

Medicine Matters is being incorporated into Springer Medicine, our new medical education platform.

Alongside the news coverage and expert commentary you have come to expect from Medicine Matters diabetes, Springer Medicine's complimentary membership also provides access to articles from renowned journals and a broad range of Continuing Medical Education programs. Create your free account »