The aim of this study was to explore family members’ experiences of everyday life in families with adult people living with type 1 diabetes. The grounded theory method was used to gather and analyse data from the interviews of nineteen family members. Six concepts describing the family members’ views on everyday living with diabetes were generated on the basis of the data. Everyday life with diabetes is described as being intertwined with hypoglycemia. Becoming acquainted with diabetes takes place little by little. Being involved in the management and watching self-management from the sidelines are concepts describing family members’ participation in the daily management of diabetes. The family members are also integrating diabetes into everyday life. Living on an emotional roller-coaster tells about the thoughts and feelings that family members experience. Family members of adult people with diabetes are involved in the management of the diabetes in many ways and experience many concerns. The family members’ point of view is important to take into consideration when developing education for adults with diabetes. 1. Introduction Diabetes mellitus is one of the most common chronic diseases all over the world. The aim of diabetes management is good metabolic control and the prevention of diabetes-related complications. Self-management has an important role in the management of diabetes [1, 2]. It is also recognised that family plays a significant part in the management of diabetes [3–8]. The importance of the relationship between the parents and the child with diabetes has been clearly documented [9–12]. In addition to that, parental support has been shown to enhance diabetes control and self-management in children and adolescents [9, 13]. During the adolescence, the collaboration with parents’ decrease and the person with type 1 diabetes take responsibility of his/her self-management [14]. However, family members may provide practical help in the day-to-day management of diabetes also for adults with diabetes, as well as support and encouragement in lifelong adherence to a demanding regimen [4, 15, 16]. While family influences the self-management of diabetes, the diabetes of one family member also influences other members of the family. Parents of the children’s with diabetes describe that their life is different after diabetes diagnosis and not so easier than before; they have lost their freedom. On one hand, they feel healthy and confident, and on the other hand the child is invisibly ill and they feel insecure and concerns connected to the future.
References
[1]
L. A. Gonder-Frederick, D. J. Cox, and L. M. Ritterband, “Diabetes and behavioral medicine: the second decade,” Journal of Consulting and Clinical Psychology, vol. 70, no. 3, pp. 611–625, 2002.
[2]
R. Salman, “Empowerment: an approach for diabetes education,” Bahrain Medical Bulletin, vol. 3, pp. 133–140, 2005.
[3]
R. A. Jones, S. W. Utz, I. C. Williams et al., “Family interactions among african americans diagnosed with type 2 diabetes,” The Diabetes Educator, vol. 34, no. 2, pp. 318–326, 2008.
[4]
B. Karlsen, T. Idsoe, B. R. Hanestad, T. Murberg, and E. Bru, “Perceptions of support, diabetes-related coping and psychological well-being in adults with type 1 and type 2 diabetes,” Psychology, Health and Medicine, vol. 9, no. 1, pp. 53–70, 2004.
[5]
B. Karlsen, B. Oftedal, and E. Bru, “The relationship between clinical indicators, coping styles, perceived support and diabetes-related distress among adults with type 2 diabetes,” Journal of Advanced Nursing, vol. 68, no. 2, pp. 391–401, 2012.
[6]
M. Kelo, M. Martikainen, and E. Eriksson, “Self-care of school-age children with diabetes: an integrative review,” Journal of Advanced Nursing, vol. 67, no. 10, pp. 2096–2108, 2011.
[7]
?. Kneck, B. Klang, and I. Fagerberg, “Learning to live with diabetes—integrating an illness or objectifying a disease,” Journal of Advanced Nursing, 2012.
[8]
J. Nagelkerk, K. Reick, and L. Meengs, “Perceived barriers and effective strategies to diabetes self-management,” Journal of Advanced Nursing, vol. 54, no. 2, pp. 151–158, 2006.
[9]
T. A. Armour, S. L. Norris, L. Jack Jr., X. Zhang, and L. Fisher, “The effectiveness of family interventions in people with diabetes mellitus: a systematic review,” Diabetic Medicine, vol. 22, no. 10, pp. 1295–1305, 2005.
[10]
C. Dashiff, T. Hardeman, and R. McLain, “Parent-adolescent communication and diabetes: an integrative review,” Journal of Advanced Nursing, vol. 62, no. 2, pp. 140–162, 2008.
[11]
A. I. Carcone, D. A. Ellis, A. Weisz, and S. Naar-King, “Social support for diabetes illness management: supporting adolescents and caregivers,” Journal of Developmental and Behavioral Pediatrics, vol. 32, no. 8, pp. 581–590, 2011.
[12]
B. J. Leonard, Y.-P. Jang, K. Savik, and M. A. Plumbo, “Adolescents with type 1 diabetes: family functioning and metabolic control,” Journal of Family Nursing, vol. 11, no. 2, pp. 102–121, 2005.
[13]
O. Hsin, A. M. La Greca, J. Valenzuela, C. T. Moine, and A. Delamater, “Adherence and glycemic control among hispanic youth with type 1 diabetes: role of family involvement and acculturation,” Journal of Pediatric Psychology, vol. 35, no. 2, pp. 156–166, 2010.
[14]
L. Keough, S. Sullivan-Bolyai, S. Crawford, L. Schilling, and J. Dixon, “Self-management of type 1 diabetes across adolescence,” The Diabetes Educator, vol. 37, no. 4, pp. 486–500, 2011.
[15]
E. A. Beverly and L. A. Wray, “The role of collective efficacy in exercise adherence: a qualitative study of spousal support and type 2 diabetes management,” Health Education Research, vol. 25, no. 2, pp. 211–223, 2010.
[16]
K. Ridge, J. Treasure, A. Forbes, S. Thomas, and K. Ismail, “Themes elicited during motivational interviewing to improve glycaemic control in adults with type1 diabetes mellitus,” Diabetic Medicine, vol. 29, no. 1, pp. 148–152, 2012.
[17]
S. Bowes, L. Lowes, J. Warner, and J. W. Gregory, “Chronic sorrow in parents of children with type 1 diabetes,” Journal of Advanced Nursing, vol. 65, no. 5, pp. 992–1000, 2009.
[18]
M. Marshall, B. Carter, K. Rose, and A. Brotherton, “Living with type 1 diabetes: perceptions of children and their parents,” Journal of Clinical Nursing, vol. 18, no. 12, pp. 1703–1710, 2009.
[19]
A. Wennick and I. Hallstr?m, “Families' lived experience one year after a child was diagnosed with type 1 diabetes,” Journal of Advanced Nursing, vol. 60, no. 3, pp. 299–307, 2007.
[20]
P. White, S. M. Smith, and T. O'Dowd, “Living with type 2 diabetes: a family perspective,” Diabetic Medicine, vol. 24, no. 7, pp. 796–801, 2007.
[21]
R. St?dberg, H. Sunvisson, and G. Ahlstr?m, “Lived experience of significant others of persons with diabetes,” Journal of Clinical Nursing B, vol. 16, no. 7, pp. 215–222, 2007.
[22]
B. Lohri-Posey, “Middle-aged appalachians living with diabetes mellitus: a family affair,” Family and Community Health, vol. 29, no. 3, pp. 214–220, 2006.
[23]
H. V. J?rgensen, U. Pedersen-Bjergaard, ?. K. Rasmussen, and K. Borch-Johnsen, “The impact of severe hypoglycemia and impaired awareness of hypoglycemia on relatives of patients with type 1 diabetes,” Diabetes Care, vol. 26, no. 4, pp. 1106–1109, 2003.
[24]
P. White, S. M. Smith, D. Hevey, and T. O'Dowd, “Understanding type 2 diabetes: including the family member's perspective,” The Diabetes Educator, vol. 35, no. 5, pp. 810–817, 2009.
[25]
L. Fisher, C. A. Chesla, M. M. Skaff, J. T. Mullan, and R. A. Kanter, “Depression and anxiety among partners of European-American and Latino patients with type 2 diabetes,” Diabetes Care, vol. 25, no. 9, pp. 1564–1570, 2002.
[26]
K. J. August, K. S. Rook, M. A. Parris Stephens, and M. M. Franks, “Are spouses of chronically ill partners burdened by exerting health-related social control?” Journal of Health Psychology, vol. 16, no. 7, pp. 1109–1119, 2011.
[27]
E. Orvik, L. Ribu, and O. E. Johansen, “Spouses' educational needs and perceptions of health in partners with type 2 diabetes,” European Diabetes Nursing, vol. 7, no. 2, pp. 63–69, 2010.
[28]
C. Sparud-Lundin, I. ?hrn, and E. Danielson, “Redefining relationships and identity in young adults with type 1 diabetes,” Journal of Advanced Nursing, vol. 66, no. 1, pp. 128–138, 2010.
[29]
T. -M. Rintala, P. Jaatinen, E. Paavilainen, and P. ?stedt-Kurki, “Interrelation between adult persons with diabetes and their family: a systematic review of the literature,” Journal of Family Nursing, vol. 19, no. 1, pp. 3–28, 2013.
[30]
J. Corbin and A. L. Strauss, Basics of Qualitative Research Techniques and Procedures for Developing Grounded Theory, Sage, Los Angeles, Calif, USA, 2008.
[31]
K. Charmaz, Constructing Grounded Theory a Practical Guide through Qualitative Analysis, Sage, Thousand Oaks, Calif, USA, 2006.
[32]
B. Taylor and H. De Vocht, “Interviewing separately or as couples? Considerations of authenticity of method,” Qualitative Health Research, vol. 21, no. 11, pp. 1576–1587, 2011.
[33]
P. ?stedt-Kurki, E. Paavilainen, and K. Lehti, “Methodological issues in interviewing families in family nursing research,” Journal of Advanced Nursing, vol. 35, no. 2, pp. 288–293, 2001.
[34]
A. Strauss and J. Corbin, Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, Sage, London, UK, 1998.
[35]
R. F. Chiovitti and N. Piran, “Rigour and grounded theory research,” Journal of Advanced Nursing, vol. 44, no. 4, pp. 427–435, 2003.
[36]
A. Cooney, “Rigour and grounded theory,” Nurse Researcher, vol. 18, no. 4, pp. 17–22, 2011.
[37]
S. Nam, C. Chesla, N. A. Stotts, L. Kroon, and S. L. Janson, “Barriers to diabetes management: patient and provider factors,” Diabetes Research and Clinical Practice, vol. 93, no. 1, pp. 1–9, 2011.
[38]
A. J. Ahola and P. H. Groop, “Barriers to self-management of diabetes,” Diabetic Medicine, vol. 30, pp. 413–420, 2013.
[39]
D. K. King, R. E. Glasgow, D. J. Toobert et al., “Self-efficacy, problem solving, and social-environmental support are associated with diabetes self-management behaviors,” Diabetes Care, vol. 33, no. 4, pp. 751–753, 2010.
[40]
A. Gherman, J. Schnur, R. Sassu, I. Veresiu, and D. David, “How are adherent people more likely to think?: a meta-analysis of health beliefs and diabetes self-care,” The Diabetes Educator, vol. 37, no. 3, pp. 392–408, 2011.
[41]
W. A. Fisher, T. Kohut, H. Schachner, and P. Stenger, “Understanding self-monitoring of blood glucose among individuals with type 1 and type 2 diabetes: an information-motivation-behavioral skills analysis,” The Diabetes Educator, vol. 37, no. 1, pp. 85–94, 2011.
[42]
K. K. Burns, A. Nicolucci, R. I. G. Holt et al., “Educational and Psychological Issues Diabetes Attitudes, Wishes and Needs Second Study (DAWN2TM): cross-national benchmarking indicators for family members living with people with diabetes,” Diabetic Medicine, vol. 30, no. 7, pp. 778–788, 2013.
[43]
M. DeBono and E. Cachia, “The impact of diabetes on psychological well being and quality of life. The role of patient education,” Psychology, Health and Medicine, vol. 12, no. 5, pp. 545–555, 2007.
[44]
A.-S. Brazeau, R. Rabasa-Lhoret, I. Strychar, and H. Mircescu, “Barriers to physical activity among patients with type 1 diabetes,” Diabetes Care, vol. 31, no. 11, pp. 2108–2109, 2008.
[45]
A. Haugstvedt, T. Wentzel-Larsen, M. Graue, O. S?vik, and B. Rokne, “Fear of hypoglycaemia in mothers and fathers of children with type 1 diabetes is associated with poor glycaemic control and parental emotional distress: a population-based study,” Diabetic Medicine, vol. 27, no. 1, pp. 72–78, 2010.
[46]
F. Wu, J. Juang, and M. C. Yeh, “The dilemma of diabetic patients living with hypoglycaemia,” Journal of Clinical Nursing, vol. 20, no. 15, pp. 2277–2285, 2011.