Escolar Documentos
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Cultura Documentos
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Centerville, UT
College of Nursing, Brigham Young University, Provo, UT
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School of Family Life, Brigham Young University, Provo, UT
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College of Nursing, Brigham Young University, Provo, UT
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University Medical Center at Texas Tech University, Lubbock, TX
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McKay School of Education, Brigham Young University, Provo, UT
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Key words:
Authors of this qualitative descriptive study interviewed 30 parents concerning their experiences raising
a child or adolescent with type 1 diabetes (T1D) and celiac disease (CD). Analysis revealed six themes:
(a) health complications of T1D, (b) challenges of daily disease management, (c) expenses, (d) the
young person's emotional/mental health, (e) experiences with healthcare providers, and (f) experiences
with people outside the family and at school. Results suggest nurses need to be sensitive to challenges
young people living with T1D and CD and their parents face, conduct ongoing assessments, and provide
time during interactions to adequately address concerns.
2014 Published by Elsevier Inc.
Chronic illness;
Qualitative;
Type 1 diabetes;
Celiac disease;
Child/adolescent health
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R
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9 Q2
6Q1
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Literature Review
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Type 1 Diabetes
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Celiac Disease
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159
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K. Erickson et al.
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Q3
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Method
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Design
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Data Collection
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Analysis
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The digitally-recorded interviews were transcribed verbatim, checked for accuracy, and entered into NVIVO 9 for
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Participants
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K. Erickson et al.
t1:1
t1:2
t1:3
Table 1
t1:4
t1:5
t1:6
t1:7
t1:8
t1:9
t1:10
t1:11
t1:12
t1:13
t1:14
t1:15
t1:16
t1:17
t1:18
t1:19
t1:20
t1:21
t1:22
t1:23
t1:24
t1:25
t1:26
t1:27
t1:28
t1:29
t1:30
t1:31
t1:32
t1:33
t1:34
t1:35
t1:36
t1:37
t1:38
Child/adolescent
Current age
Age at diagnosis (T1D)
Age at diagnosis (CD)
Years living with T1D
Years living with CD
Diagnosed with celiac first
Gender (female)
Mothers
Age
Years of education
12 or fewer
1316 years
N 16 years
Employment
Full time
Part time
Fathers
Age
Years of education
12 or fewer
1316 years
N 16 years
Employment
Full time
Part time
Children in family
Household income
b$25,000
$25,001$50,000
$51,001$75,000
$75,001$100,000
N$100,000
Race (white)
Family type (two parent)
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305
306
307
308
309
310
311
312
313
314
315
316
317
318
Mean/% (SD)
12.5 (3.1)
6.7 (3.67)
8.5 (2.89)
5.8 (3.49)
4.24 (2.44)
15.0%
81.5%
R
O
O
23.1%
57.6%
19.2%
37.0%
33.3%
43.88 (7.74)
29.6%
44.4%
11.0%
88.9%
3.7%
3.7 (1.69)
7.6%
19.2%
38.5%
19.2%
15.4%
96.2%
85.2%
41.81 (6.84)
N
C
O
302
Variable
301
300
299
298
297
296
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290
289
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286
285
284
B:1
Demographics.
B:3
B:4
B:5
B:6
B:7
B:8
B:9
B:10
B:11
B:12
B:13
B:14
B:15
B:16
B:17
B:18
B:19
B:20
B:21
B:22
B:23
B:24
B:25
B:26
B:27
B:28
B:29
B:30
B:31
B:32
B:33
Results
340
339
338
337
336
335
334
333
332
331
330
329
328
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341
349
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Table 2
t2:4
Health complications
t2:7
t2:8
t2:9
Themes
Description
t2:6
Perceptions of parents raising children with type 1 diabetes and celiac disease.
R
O
O
t2:5
398
Financial Concerns
402
368
403
369
417
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384
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397
371
370
366
365
N
C
O
364
363
367
362
399
400
401
404
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433
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447
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491
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441
N
C
O
440
439
486
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You can treat him like a victimor you can say; yes,
you have T1D now what? You are his coach and how
you treat his disease is how he's going to view it. You
view it as a big dealhe's going to die, that's how he's
going to view it. You view it as okyou can live your life,
then that's how he'll deal with it.
501
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O
O
438
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485
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436
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O
O
545
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559
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566
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572
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571
570
569
568
Discussion
575
578
579
580
581
582
583
584
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577
N
C
O
574
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558
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555
591
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658
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O
657
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655
http://glutendude.com/dear-gluten-dude/teenager-withceliac-disease/
http://www.livingwithout.com/issues/4_28/foodallergies-teenagers-3454-1.html
http://www.celiac.com/articles/563/1/ROCK-RaisingOur-Celiac-KidsNational-Celiac-Disease-SupportGroup/Page1.html
http://celiac.org/chapters/
http://www.celiaccentral.org/kids/
http://www.diabetes.org/in-my-community/
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N
C
O
648
647
K. Erickson et al.
B:1
B:3
B:4
B:5
B:6
B:7
B:8
B:9
B:10
B:11
B:12
B:13
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References
Abid, N., McGlone, O., Cardwell, C., McCallion, W., & Carson, D. (2011).
Clinical and metabolic effects of gluten free diet in children with type 1
diabetes and coeliac disease. Pediatric Diabetes, 12, 322325, http://
dx.doi.org/10.1111/j.1399-5448.2010.00700.x.
American Diabetes Association (2014). Standards of medical care in
diabetes2014. Diabetes Care, 37, S14S80, http://dx.doi.org/10.
2337/dc14-S014.
Author Blinded (2013).
Bayliss, E. A., Steiner, J. F., Fernald, D. H., Crane, L. A., & Main, D. S.
(2003). Descriptions of barriers to self-care by persons with comorbid
chronic diseases. Annals of Family Medicine, 1, 1521.
Bhadada, S., Kochhar, R., Bhansali, A., Dutta, U., Kumar, P.,
Poornachandra, K., et al. (2011). Prevalence and clinical profile of
celiac disease in type 1 diabetes mellitus in north India. Journal of
Gastroenterology and Hepatology, 26, 378381, http://dx.doi.org/10.
1111/j.1440-1746.2010.06508.x.
Bowes, S., Lowes, L., Warner, J., & Gregory, J. (2009). Chronic sorrow in
parents of children with type 1 diabetes. Journal of Advanced Nursing,
65, 9921000, http://dx.doi.org/10.1111/j.1365-2648.2009.04963.x.
Buchbinder, M., Detzer, M., Welsch, R., Christiano, A., Patashnick, J., & Rich, M.
(2005). Assessing adolescents with insulin-dependent diabetes mellitus: A
multiple perspective pilot study using visual illness narratives and interviews.
Journal of Adolescent Health, 36, 71.e971.e13.
Centers for Disease Control and Prevention (CDC) (2011). National
Diabetes FactSheet 2011: Fast Facts on Diabetes U.S. Department
of Health and Human Services. Retrieved from. http://www.cdc.gov/
diabetes/pubs/pdf/ndfs_2011.pdf
Chase, H., & Eisenbarth, G. (2011). Diabetes mellitus. In W. W. HayJr., M.
Levin, J. Sondheimer, & R. Deterding (Eds.), Current diagnosis &
treatment: Pediatrics (pp. 984990) (20th ed.). New York, NY:
McGraw-Hill Medical.
DAnnunzio, G., Giannattasio, A., Poggi, E., Castellano, E., Calvi, A.,
Pistorio, A., et al. (2009). B-cell autoimmunity in pediatric celiac
disease: The case for routine screening? Diabetes Care, 32, 254256,
http://dx.doi.org/10.2337/dc08-1487.
de Lorenzo, C., Xikota, J., Wayhs, M., Nassar, S., & de Souza Pires, M.
(2012). Evaluation of the quality of life of children with celiac disease
and their parents: A casecontrol study. Quality of Life Research, 21,
7785, http://dx.doi.org/10.1007/s11136-011-9930-7.
Denzin, N., & Lincoln, Y. (Eds.). (2000). Handbook of qualitative research
(2nd ed.). Thousand Oaks, CA: Sage Publications, Inc.
Gainer, C. (2011). Celiac disease: Helping patients live gluten-free. The
Nurse Practitioner, 36, 1419, http://dx.doi.org/10.1097/01.NPR.
0000403289.30513.2d.
Garcia-Manzanares, A., & Lucendo, A. (2011). Nutritional and dietary
aspects of celiac disease. Nutrition in Clinical Practice, 26, 163173,
http://dx.doi.org/10.1177/0884533611399773.
Graue, M., Wentzel-Larsen, T., Hanestad, B., & Sovik, O. (2005). Healthrelated quality of life and metabolic control in adolescents with diabetes:
767
809
Acknowledgments
766
765
764
763
762
761
N
C
O
760
759
808
Q4
758
Uncited reference
R
O
O
776
757
775
756
812
813
814
815
816
817
818
819
820
821
822
823
824
825
826
827
828
829
830
831
832
833
834
835
836
837
838
839
840
841
842
843
844
845
846
847
848
849
850
851
852
853
854
855
856
857
858
859
860
861
862
10
N
C
O
R
O
O
Mullins, L., Fuemmeler, B., Hoff, A., Chaney, J., Pelt, J., & Ewing, C.
(2004). The relationship of parental overprotection and perceived child
vulnerability to depressive symptomatology in children with type 1
diabetes mellitus: The moderating influence of parenting stress.
Children's Health Care, 33, 2134.
Olsson, C., Hrnell, A., Ivarsson, A., & Sydner, Y. (2008). The everyday
life of adolescent coeliacs: Issues of importance for compliance with the
gluten-free diet. Journal of Human Nutrition & Dietetics, 21, 359367,
http://dx.doi.org/10.1111/j.1365-277X.2008.00867.x.
Olsson, C., Lyon, P., Hornell, A., Ivarsson, A., & Snyder, Y. (2009). Food
that makes you different: The stigma experienced by adolescents with
celiac disease. Qualitative Health Research, 19, 976984, http://dx.doi.
org/10.1177/1049732309338722.
Patton, M. Q. (1990). Qualitative Evaluation and Research Methods
(2nd ed.). Newbury Park, CA: Sage.
Piazza, J. R., Charles, S. T., & Almeida, D. M. (2007). Living with chronic
health conditions: Age differences in affective well-being. The Journals
of Gerontology. Series B, Psychological Sciences and Social Sciences,
62, P313P321.
Popp, J., Robinson, J., Britner, P., & Blank, T. (2014). Parent adaptation and
family functioning in relation to narratives of children with chronic
illness. Journal of Pediatric Nursing, 29, 5864, http://dx.doi.org/10.
1016/j.pedn.2013.07.004.
PubMed Health (2013). U.S. National Library of Medicine. Type 1 diabetes.
Retrieved from. http://www.ncbi.nlm.nih.gov/pubmedhealth/
PMH0001350/
Ruiz, A., Jr. (2011). Malabsorption syndromes. In R. Porter, & J. Kaplan
(Eds.), The Merck manual of diagnosis and therapy (pp. 158159) (19th
ed.). Whitehouse Station, NJ: Merck Sharp & Dohme Corp.
Samasca, G., Iancu, M., Butnariu, A., Andreica, M., & Dejica, D. (2011).
Prevalence of IgA antitissue transglutaminase antibodies in children
with type 1 diabetes mellitus. Journal of Clinical Laboratory Analysis,
25, 156161, http://dx.doi.org/10.1002/jcla.20449.
Sandelowski, M. (2000). Whatever happened to qualitative description?
Research in Nursing & Health, 23, 334340.
Scaramuzza, A., Mantegazza, C., Bosetti, A., & Zuccotti, G. (2013). Type 1
diabetes and celiac disease: The effects of gluten free diet on metabolic
control. World Journal of Diabetes, 4, 130134, http://dx.doi.org/10.
4239/wjd.v4.i4.130.
Schwarzenberg, S. J., & Brunzell, C. (2002). Type 1 diabetes and celiac
disease: Overview and medical nutrition therapy. Diabetes Spectrum,
15, 197201, http://dx.doi.org/10.2337/diaspect.15.3.197.
Shrestha, S., Ahang, P., Albright, A., & Imperatore, G. (2011). Medical
expenditures associated with diabetes among privately insured U.S.
youth in 2007. Diabetes Care, 34, 10971101, http://dx.doi.org/10.
2337/dc10-2177.
Simell, S., Hoppu, S., Simell, T., Stahlberg, M., Routi, T., Simell, V., et al.
(2010). Age at development of type 1 diabetes- and celiac diseaseassociated antibodies and clinical disease in genetically susceptible
children observed from birth. Diabetes Care, 33, 774779, http://dx.
doi.org/10.2337/dc09-1217.
Smaldone, A., & Ritholz, M. (2011). Perceptions of parenting children with
type 1 diabetes diagnosed in early childhood. Journal of Pediatric
Health Care, 25, 8795.
Smyth, D., Plagnol, V., Walker, N., Cooper, J., Downes, K., Yang, J., et al.
(2008). Shared and distinct genetic variants in type 1 diabetes and celiac
disease. New England Journal of Medicine, 359, 27672777, http://dx.
doi.org/10.1056/NEJMoa0807917.
Sparud-Lundin, C., Ohrn, I., & Danielson, E. (2010). Redefining
relationships and identity in young adults with type 1 diabetes.
Journal of Advanced Nursing, 66, 128138, http://dx.doi.org/10.1111/
j.1365-2648.2009.05166.x.
Stevens, L., & Rashid, M. (2008). Gluten-free and regular foods: A cost
comparison. Canadian Journal of Dietetic Practice and Research, 69,
147150, http://dx.doi.org/10.3148/69.3.2008.147.
Sullivan-Bolyai, S., Bova, C., Johnson, K., Cullen, K., Jaffarian, C., &
Gupta, O. (2014). Engaging teens and parents in collaborative practice:
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