Document Type : Original Article
Authors
1 Department of Medical‑Surgical Nursing, Nursing and Midwifery Care Research Center, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran
2 Department of Gastroenterology and Hepatology, Ghaem Hospital, Mashhad University of Medical Sciences, Mashhad, Iran
3 Department of Health Sciences, Social Determinants of Health Research Center, Mashhad University of Medical Sciences, Mashhad, Iran
Abstract
Inflammatory bowel disease (IBD), including Crohn’s and ulcerative colitis diseases, is characterized
by clinical periods of remission and relapse. Excessive care stress can have long‑term negative
physical and psychological consequences not only for caregivers but also for the recipients of care.
This integrative review aims to identify, describe, and synthesize the results of current available
research focused on the burdens of IBDs on family caregiver. An integrative review was performed
using Whittemore and Knafl methodology. A systematic search of electronic databases including
Web of Science, PubMed, Embase, and Scopus from January 2000 to October 2019 was conducted.
Articles were included if published in English and focus on IBD burden on family caregivers. Of 730
records, 16 articles with quantitative, qualitative, and Q methodology study designs were eventually
included in the review. The synthesis of these articles led to the identification of four key types of
effects: biopsychosocial, daily life activities, physical health, and financial. The chronic and relapsing
nature of IBD exposes family caregivers to considerable risk. Thus, the care burden of IBD patients’
caregivers needs to be evaluated continuously and relieved through family‑centered interventions.
Keywords
WalkerJR, Spinelli A, et al. Integrated models of care in managing
inflammatory bowel disease: A discussion. Inflamm Bowel Dis
2012;18:1582‑7.
2. Shukla R, Thakur E, Bradford A, Hou JK. Caregiver burden in
adults with inflammatory bowel disease. Clin Gastroenterol
Hepatol 2018;16:7‑15.
3. GauglerJE, WallMM, KaneRL, MenkJS, SarsourK, JohnstonJA, et al.
Does caregiver burden mediate the effects of behavioral disturbances
on nursing home admission? Am J Geriatr Psychiatry 2011;19:497‑506.
4. Nguyen DL, Chao D, Ma G, Morgan T. Quality of life and factors
predictive of burden among primary caregivers of chronic liver
disease patients. Ann Gastroenterol 2015;28:124‑9.
5. Zand A, Platt A, Van Deen WK, Hommes DW. The effect of
inflammatory bowel disease on patients’ caregivers. J Crohns
Colitis 2016;10:S451.
6. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS.
Caregiver burden: A clinical review. JAMA 2014;311:1052‑60.
7. von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC,
Vandenbroucke JP, et al. The Strengthening the reporting of
observational studies in epidemiology (STROBE) statement:
Guidelines for reporting observational studies. Lancet
2007;370:1453‑7.
8. Schou L, Høstrup H, Lyngsø EE, Larsen S, Poulsen I. Validation
of a new assessment tool for qualitative research articles. J Adv
Nurs 2012;68:2086‑94.
9. Whittemore R, Knafl K. The integrative review: Updated
methodology. J Adv Nurs 2005;52:546‑53.
10. Vergara M, Casellas F, Badia X, Malagelada JR. Assessing
the quality of life of household members of patients with
inflammatory bowel disease: Development and validation of a
specific questionnaire. Am J Gastroenterol 2002;97:1429‑37.
11. Liu R, Tang A, Wang X, Shen S. Assessment of quality of life
in Chinese patients with inflammatory bowel disease and their
caregivers. Inflamm Bowel Dis 2018;24:2039‑47.
12. Gray WN, Resmini AR, Baker KD, Holbrook E, Morgan PJ,
Ryan J, et al. Concerns, barriers, and recommendations to
improve transition from pediatric to adult IBD care: Perspectives
of patients, parents, and health professionals. Inflamm
Bowel Dis 2015;21:1641‑51.
13. Day AS, Whitten KE, Bohane TD. Childhood inflammatory
bowel disease: Parental concerns and expectations. World J
Gastroenterol 2005;11:1028‑31.
14. Loga S, Sošić B, Kulenović AD, Svraka E, Bosankić N, Kučukalić A,
et al. Chronic illness and family: Impact of schizophrenia and Crohn’s
disease on the family quality of life. Psychiatr Danub 2012;24:359‑66.
15. Parekh NK, Shah S, McMaster K, Speziale A, Yun L, Nguyen DL,
et al. Effects of caregiver burden on quality of life and
coping strategies utilized by caregivers of adult patients with
inflammatory bowel disease. Ann Gastroenterol 2017;30:89‑95.
16. Odell S, Sander E, Denson LA, Baldassano RN, Hommel KA. The
contributions of child behavioral functioning and parent distress
to family functioning in pediatric inflammatory bowel disease.
J Clin Psychol Med Settings 2011;18:39‑45.
17. Guilfoyle SM, Denson LA, Baldassano RN, Hommel KA.
Paediatric parenting stress in inflammatory bowel disease:
Application of the pediatric inventory for parents. Child Care
Health Dev 2012;38:273‑9.
18. Werner H, Braegger C, Buehr P, KollerR, Nydegger A, SpalingerJ,
et al. Shorter time since inflammatory bowel disease diagnosis in
children is associated with lower mental health in parents. Acta
Paediatr 2015;104:e32‑8.
19. Jelenova D, Prasko J, Ociskova M, Karaskova E, Hunkova M,
Kolarova J, et al. Quality of life in adolescents with inflammatory
bowel disease and their parents – Comparison with healthy
controls. Neuro Endocrinol Lett 2015;36:787‑92.
20. Lindfred H, Saalman R, Nilsson S, Lepp M. Parents’ views of their
child’s health and family function in paediatric inflammatory
bowel disease. Acta Paediatr 2010;99:612‑7.
21. Greenley RN, Cunningham C. Parent quality of life in the context
of pediatric inflammatory bowel disease. J Pediatr Psychol
2009;34:129‑36.
22. SinAT, Damman JL, ZiringDA, GleghornEE, Garcia‑CareagaMG,
Gugig RR, et al. Out‑of‑pocket cost burden in pediatric
inflammatory bowel disease: A cross‑sectional cohort analysis.
Inflamm Bowel Dis 2015;21:1368‑77.
23. Magro F, Portela F, Lago P, Deus J, Cotter J, Cremers I, et al.
Inflammatory bowel disease: A patient’s and caregiver’s
perspective. Dig Dis Sci 2009;54:2671‑9.
24. Lindström C, Aman J, Norberg AL. Increased prevalence of
burnout symptoms in parents of chronically ill children. Acta
Paediatr 2010;99:427‑32.
25. Plevinsky JM, Gumidyala AP, Poulopoulos N, Kahn SA,
Guilfoyle SM, Hommel KA, et al. Illness‑related parenting
stress among parents of adolescents and young adults with
inflammatory bowel diseases. Child Health Care 2018;47:136‑49.
26. Kobos E, Imiela J. Factors affecting the level of burden of caregivers
of children with type 1 diabetes. Appl Nurs Res 2015;28:142‑9.
27. Hsu T, Loscalzo M, Ramani R, Forman S, Popplewell L, Clark K,
et al. Factors associated with high burden in caregivers of older
adults with cancer. Cancer 2014;120:2927‑35.
28. HuX, DolanskyMA, HuX, Zhang F, QuM. Factors associated with
the caregiver burden among family caregivers of patients with
heart failure in southwest China. Nurs Health Sci 2016;18:105‑12.
29. Bajaj JS, Wade JB, Gibson DP, Heuman DM, Thacker LR,
Sterling RK, et al. The multi‑dimensional burden of cirrhosis
and hepatic encephalopathy on patients and caregivers. Am J
Gastroenterol 2011;106:1646‑53.
30. McMaster K, Aguinaldo L, Parekh NK. Evaluation of an ongoing
psychoeducational inflammatory bowel disease support group in
an adult outpatient setting. Gastroenterol Nurs 2012;35:383‑90.
31. Milbury K, Mallaiah S, Mahajan A, Armstrong T, Weathers SP,
Moss KE, et al. Yoga program for high‑grade glioma patients
undergoing radiotherapy and their family caregivers. Integr
Cancer Ther 2018;17:332‑6.
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