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Gepubliceerd in: Journal of Child and Family Studies 5/2020

14-09-2019 | Review Paper

The Consequences of Type 1 Diabetes Onset On Family Life. An Integrative Review

Auteurs: Silvia Fornasini, Francesco Miele, Enrico M. Piras

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 5/2020

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Abstract

Objectives

Type 1 diabetes mellitus (T1DM) is an auto-immune disease that requires an important effort in self-management. The onset of T1DM in a child places a significant burden on parents, requiring careful management of blood glucose levels through insulin injections, diet and exercise. The main aim of our study is to synthesise what is known about the consequences of T1DM onset for families and, in particular, how parents share the emotional, practical and educational burden of care connected with diabetes management.

Methods

To accomplish this goal, we conducted an integrative review of 29 studies concerned with the ways in which disease management permeates the daily lives of families. Based on our findings, we offer suggestions for future research. For this study, PubMed, SAGE Journals, Google Scholar, ERIC, Web of Science, Embase and Scopus databases from 2000 to 2017 were searched using keywords related to T1DM management in families, parental roles and learning processes. Our sample included qualitative, quantitative and mixed-method studies which assessed the consequences of T1DM onset for the family and, in particular, the ways through which disease management permeates the daily lives of mothers and fathers of children with T1DM (3–18 years of age).

Results

The initial literature search returned 113 papers and 29 studies that met all the inclusion criteria. Through a content analysis, we identified three conceptual categories: (i) ‘managing emotions after diagnosis’, (ii) ‘reconstructing routines around new needs’ and (iii) ‘educating young patients to enhance autonomy’.

Conclusions

The review results strongly support that diabetes is a family illness in which patients and parents are at the centre of emotions, routines and knowledge strictly connected to diabetes. Strong emotions, new routines and educational processes arise after T1DM onset, changing family life definitively.
Literatuur
go back to reference Barnard, K., Thomas, S., Royle, P., Noyes, K., & Waugh, N. (2010). Fear of hypoglycaemia in parents of young children with type 1 diabetes: a systematic review. BMC Pediatrics, 10(1), 50.CrossRef Barnard, K., Thomas, S., Royle, P., Noyes, K., & Waugh, N. (2010). Fear of hypoglycaemia in parents of young children with type 1 diabetes: a systematic review. BMC Pediatrics, 10(1), 50.CrossRef
go back to reference Broome, M.E. (1993). Integrative literature reviews for the development of concepts. In B. L. Rodgers, & K. A. Knafl K.A. (Eds), 2nd edn., Concept development in nursing (pp. 231–250). Philadelphia, PA: W.B. Saunders Co. Broome, M.E. (1993). Integrative literature reviews for the development of concepts. In B. L. Rodgers, & K. A. Knafl K.A. (Eds), 2nd edn., Concept development in nursing (pp. 231–250). Philadelphia, PA: W.B. Saunders Co.
go back to reference Butler, D. A., Zuehlke, J. B., Tovar, A., Volkening, L. K., Anderson, B. J., & Laffel, L. M. (2008). The impact of modifiable family factors on glycemic control among youth with type 1 diabetes. Pediatric Diabetes, 9, 373–381.CrossRef Butler, D. A., Zuehlke, J. B., Tovar, A., Volkening, L. K., Anderson, B. J., & Laffel, L. M. (2008). The impact of modifiable family factors on glycemic control among youth with type 1 diabetes. Pediatric Diabetes, 9, 373–381.CrossRef
go back to reference Cooper, H. M. (1989). Integrating research: a guide for literature reviews. Newbury Park, CA: SAGE. Cooper, H. M. (1989). Integrating research: a guide for literature reviews. Newbury Park, CA: SAGE.
go back to reference Davis, C., Delamater, A. M., Shaw, K. H., La Greca, A. M., Eidson, M. S., Perez-Rodriguez, J. E., & Nemery, R. (2001). Parenting styles, regimen adherence, and glycemic control in 4- to 10-year-old children with diabetes. Journal of Pediatric Psychology, 26(2), 123–129.CrossRef Davis, C., Delamater, A. M., Shaw, K. H., La Greca, A. M., Eidson, M. S., Perez-Rodriguez, J. E., & Nemery, R. (2001). Parenting styles, regimen adherence, and glycemic control in 4- to 10-year-old children with diabetes. Journal of Pediatric Psychology, 26(2), 123–129.CrossRef
go back to reference Graber, A. L., Brown, A. W., & Wolff, K. (2010). A life of control: stories of living with diabetes. Nashville, Tennessee: Vanderbilt University Press. Graber, A. L., Brown, A. W., & Wolff, K. (2010). A life of control: stories of living with diabetes. Nashville, Tennessee: Vanderbilt University Press.
go back to reference Gruhn, M. A., Lord, J. H., & Jaser, S. S. (2016). Collaborative and overinvolved parenting differentially predict outcomes in adolescents with Type 1 diabetes. Health Psychology, 35(7), 652.CrossRef Gruhn, M. A., Lord, J. H., & Jaser, S. S. (2016). Collaborative and overinvolved parenting differentially predict outcomes in adolescents with Type 1 diabetes. Health Psychology, 35(7), 652.CrossRef
go back to reference Hopia, H., Latvala, E., & Liimatainen, L. (2016). Reviewing the methodology of an integrative review. Scandinavian Journal of Caring Sciences, 30(4), 662–669.CrossRef Hopia, H., Latvala, E., & Liimatainen, L. (2016). Reviewing the methodology of an integrative review. Scandinavian Journal of Caring Sciences, 30(4), 662–669.CrossRef
go back to reference Laffel, L. M., Vangsness, L., Connell, A., Goebel-Fabbri, A., Butler, D., & Anderson, B. J. (2003). Impact of ambulatory, family-focused teamwork intervention on glycemic control in youth with type 1 diabetes. The Journal of Pediatric, 142, 409–416.CrossRef Laffel, L. M., Vangsness, L., Connell, A., Goebel-Fabbri, A., Butler, D., & Anderson, B. J. (2003). Impact of ambulatory, family-focused teamwork intervention on glycemic control in youth with type 1 diabetes. The Journal of Pediatric, 142, 409–416.CrossRef
go back to reference Lowes, L., Gregory, J. W., & Lyne, P. (2005). Newly diagnosed childhood diabetes: a psychosocial transition for parents? Journal of Advanced Nursing, 50, 253–261. 0.1111/j.1365-2648.2005.03388.x.CrossRef Lowes, L., Gregory, J. W., & Lyne, P. (2005). Newly diagnosed childhood diabetes: a psychosocial transition for parents? Journal of Advanced Nursing, 50, 253–261. 0.1111/j.1365-2648.2005.03388.x.CrossRef
go back to reference Mol, A. (2002). The body multiple: ontology in medical practice. Duhram: Duke University Press.CrossRef Mol, A. (2002). The body multiple: ontology in medical practice. Duhram: Duke University Press.CrossRef
go back to reference Moreland, E. C., Tovar, A., Zuehlke, J. B., Butler, D. A., Milaszewski, K., & Laffel, L. M. (2004). The impact of physiological, therapeutic and psychosocial variables on glycemic control in youth with type 1 diabetes mellitus. Journal of Pediatric Endocrinology Metabolism, 17, 1533–1544.CrossRef Moreland, E. C., Tovar, A., Zuehlke, J. B., Butler, D. A., Milaszewski, K., & Laffel, L. M. (2004). The impact of physiological, therapeutic and psychosocial variables on glycemic control in youth with type 1 diabetes mellitus. Journal of Pediatric Endocrinology Metabolism, 17, 1533–1544.CrossRef
go back to reference Nieuwesteeg, A., Hartman, E., Emons, W., Bakel, H., Aanstoot, H. J., Mil, E., & Pouwer, F. (2016). Paediatric parenting stress in fathers and mothers of young children with Type 1 diabetes: a longitudinal study. Diabetic Medicine, 34(6), 821–827. https://doi.org/10.1111/dme.13300.CrossRef Nieuwesteeg, A., Hartman, E., Emons, W., Bakel, H., Aanstoot, H. J., Mil, E., & Pouwer, F. (2016). Paediatric parenting stress in fathers and mothers of young children with Type 1 diabetes: a longitudinal study. Diabetic Medicine, 34(6), 821–827. https://​doi.​org/​10.​1111/​dme.​13300.CrossRef
go back to reference Palmer, D. L., Berg, C. A., Wiebe, D. J., Beveridge, R., Korbel, C., & Upchurch, R. (2004). The role of autonomy and pubertal status in understanding age differences in maternal involvement in diabetes responsibility across adolescence. Journal of Pediatric Psychology, 29(1), 35–46. https://doi.org/10.1093/jpepsy/jsh005.CrossRefPubMed Palmer, D. L., Berg, C. A., Wiebe, D. J., Beveridge, R., Korbel, C., & Upchurch, R. (2004). The role of autonomy and pubertal status in understanding age differences in maternal involvement in diabetes responsibility across adolescence. Journal of Pediatric Psychology, 29(1), 35–46. https://​doi.​org/​10.​1093/​jpepsy/​jsh005.CrossRefPubMed
go back to reference Piras, E. M., Miele, F., Bruni, A., Coletta, C., & Zanutto, A. (2014). Managing complex therapies outside hospitals. An analysis of GPs practices of how to support medication at home. In C. Lovis (Ed.), e-Health for continuity of care (pp. 652-656). European Federation for Medical Informatics and IOS Press. Piras, E. M., Miele, F., Bruni, A., Coletta, C., & Zanutto, A. (2014). Managing complex therapies outside hospitals. An analysis of GPs practices of how to support medication at home. In C. Lovis (Ed.), e-Health for continuity of care (pp. 652-656). European Federation for Medical Informatics and IOS Press.
go back to reference Schreier, M. (2012). Qualitative content analysis in practice. Thousand Oaks, CA: Sage Publications. Schreier, M. (2012). Qualitative content analysis in practice. Thousand Oaks, CA: Sage Publications.
go back to reference Unruh, K.T., & Pratt, W. (2008). The invisible work of being a patient and implications for health care:“[the doctor is] my business partner in the most important business in my life, staying alive. In Ethnographic praxis in industry conference proceedings. Oxford, UK: Blackwell Publishing Ltd. Unruh, K.T., & Pratt, W. (2008). The invisible work of being a patient and implications for health care:“[the doctor is] my business partner in the most important business in my life, staying alive. In Ethnographic praxis in industry conference proceedings. Oxford, UK: Blackwell Publishing Ltd.
go back to reference Whittemore, R., & Knafl, K. (2005). The integrative review: updated methodology. Journal of Advanced Nursing, 52(5), 546–553. Whittemore, R., & Knafl, K. (2005). The integrative review: updated methodology. Journal of Advanced Nursing, 52(5), 546–553.
go back to reference Wiebe, D. J., Berg, C. A., Korbel, C., Palmer, D. L., Beveridge, R. M., Upchurch, R., ... & Donaldson, D. L. (2005). Children’s appraisals of maternal involvement in coping with diabetes: Enhancing our understanding of adherence, metabolic control, and quality of life across adolescence. Journal of Pediatric Psychology, 30(2), 167–178. Wiebe, D. J., Berg, C. A., Korbel, C., Palmer, D. L., Beveridge, R. M., Upchurch, R., ... & Donaldson, D. L. (2005). Children’s appraisals of maternal involvement in coping with diabetes: Enhancing our understanding of adherence, metabolic control, and quality of life across adolescence. Journal of Pediatric Psychology, 30(2), 167–178.
go back to reference Worrall-Davies, A., Owens, D., Holland, P., & Haigh, D. (2002). The effect of parental expressed emotion on glycaemic control in children with Type 1 diabetes: Parental expressed emotion and glycaemic control in children. Journal of Psychosomatic Research, 52(2), 107–113.CrossRef Worrall-Davies, A., Owens, D., Holland, P., & Haigh, D. (2002). The effect of parental expressed emotion on glycaemic control in children with Type 1 diabetes: Parental expressed emotion and glycaemic control in children. Journal of Psychosomatic Research, 52(2), 107–113.CrossRef
go back to reference Wysocki, T., & Greco, P. (2006). Social support and diabetes management in childhood and adolescence: influence of parents and friends. Current Diabetes Reports, 6(2), 117–122.CrossRef Wysocki, T., & Greco, P. (2006). Social support and diabetes management in childhood and adolescence: influence of parents and friends. Current Diabetes Reports, 6(2), 117–122.CrossRef
Metagegevens
Titel
The Consequences of Type 1 Diabetes Onset On Family Life. An Integrative Review
Auteurs
Silvia Fornasini
Francesco Miele
Enrico M. Piras
Publicatiedatum
14-09-2019
Uitgeverij
Springer US
Gepubliceerd in
Journal of Child and Family Studies / Uitgave 5/2020
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI
https://doi.org/10.1007/s10826-019-01544-z

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