Balance of Family Caring in Families with Chronically Ill Children: A Concept Analysis
Article Sidebar
Main Article Content
Abstract
The concept of balance of family caring was expected to emerge as a vital issue in families with chronically ill children. However, it was unclear to clarify understanding about the scope of this concept. This study aimed to identify the balance of family caring in families with chronically ill children. Walker and Avant’s eight-step method was employed to conduct this study comprising selecting a concept, determining the purposes, uses of the concept, defining attributes, identification of a model, borderline, related and contrary cases, antecedents and consequences, the definition of empirical referents. The search was performed in September 2018. Five databases were included: CIHAHL, MEDLINE, PsycINFO, Academic Search Premier, and EBSCO Host. Ten articles were used for analysis. The actual attributes were composed of the balances between working outside and providing home-based care, potential hope and despair, caring for a sick child and practicing self-care, and balancing caring style. The antecedents, namely family characteristics, family stress, and family coping skills were identified in this study. The consequences composed of effective family functioning, improved family well-being, and children’s quality of life. In conclusion, this concept can be applied for developing effective care for children with chronic illnesses.
Article Details
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
References
1. Rezaei M, khodabakhshi-koolaee A, falsafinejad M, et al. Identifying the psychological challenges of mothers with a chronically ill child: A phenomenological study. J Qual Res Health Sci 2020;9(1):18-27. doi: 10.22062/JQR.2020.90999
2. Im Y, Kim DH. Family management style and psychosocial health of children with chronic conditions. J Child Fam Stud 2021;30(2):483-92. doi: 10.1007/s10826-020-01870-7
3. The Health United States. Health conditions and risk factors, by age: The United States, selected years 1988-1994 through 2015-2016. [Internet].2018 (Accessed September 15, 2018, at http://www.cdc.gov/nchs/products/databriefs/db291.htm.).
4. Zablotsky B, Black LI, Blumberg SJ. Estimate prevalence of children with diagnosed developmental disabilities in the United States, 2014-2016. [Internet].2018 (Accessed Septem ber 20, 2018, at http://www.cdc.gov/nchs/products/databriefs/ db291.htm.).
5. Vaz JC, Milbrth VM, Gbatz RI, et al. Care for families of children with chronic disease: Integrative review. J Nurs UFPE online 2 0 1 8 ; 1 2 ( 5 ) : 1 3 9 7 - 4 0 8 . d o i : 10.5205/1981-8963-v12i5a230852p1397-1408-2018
6. Pouraboli B, Abedi HA, Abbaszadeh A, et al. The burden of care: Experiences of parents of children with thalassemia. J Nurs Care 2017;6(2). doi:10.4172/2167-1168.1000389
7. Shosha GA, Kalaldeh MA. Challenges of having a child with thalassemia major: a phenomenological study. J Res Nurs 2018;23(1):9-20. doi: 10.1177/1744987117724497
8. Årestedt L, Benzein E, Persson C. Families living with chronic illness: beliefs about illness, family, and health Care. J Fam Nurs 2 0 1 5 ; 2 1 ( 2 ) : 2 0 6 - 3 1 . d o i : 10.1177/1074840715576794.
9. Robinson CA. Families living well with chronic illness: The healing process of moving on. Qual Health Res 2017;27(4):447- 61. doi: 10.1177/1049732316675590
10. Keshvari M, Ebrahimi A, Abedi H. Relation between chil dren’s well-being and family function in children with Thalas semia Major in Isfahan in 2013. Global J Health Sci 2016;8(12):170-7. doi: 10.5539/gjhs.v8n12p170
11. Shahraki-vahed A, Firouzkouhi M, Abdollahimohammad A, et al. Lived experiences of Iranian parents of beta-thalassemia children. J Multidiscip Hwalthc 2017;10:243-51. doi: 10.2147/ JMDH.S132848
12. Akbari M, Alavi M, Irajpour A, et al. Challenges of family caregivers of patients with mental disorders in Iran: A narra tive review. Iran J Nurs Midwifery Res 2018; 23(5):329-37. doi: 10.4103/ijnmr.IJNMR_122_17.
13. Nabors LA, Kichler JC, Brassell A, et al. Factors related to caregiver state anxiety and coping with a child’s chronic illness. Fam Syst Health 2013;31(2):171-80. doi: 10.1037/ a0031240.
14. Gissou H, Niloofar M. Life satisfaction in children and adolescents with beta thalassemia major in southwest Iran. Electronic Physician 2 0 1 4 ; 6 ( 1 ) : 7 5 9 - 6 7 . d o i : 10.14661/2014.759-767
15. Mussatto KA, Van Rompay MI, Trachtenberg FL, et al. Family function, quality of life, and well-being in parents of infants with hypoplastic left heart syndrome. J Fam Nurs 2021;27(3):222-34. doi: 10.1177/1074840720987309.
16. Gharaibeh HF, Gharaibeh MK. Quality of life of working and non-working Jordanian mothers caring for chronically ill child and its associated factors. Heliyon 2021;7(3):e06320. doi: 10.1016/j.heliyon.2021.e06320.
17. Knecht C, Hellmers C, Metzing JS. The perspective of siblings of children with chronic illness: A literature review. J Pediatr Nurs 2015; 30:102-16. doi: 10.1016/j.pedn.2014.10.010.
18. Benson AV, Lambert A, Gallagher P, et al. Family communication in the context of pediatric epilepsy: A systematic review. Epilepsy Behav 2015; 51:225-39. doi: 10.1016/j.ye beh.2015.06.043.
19. Waldboth V, Patch C, Mahrer-Imhof R, et al. Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people’s transition into adulthood when affected by a genetic and chronic childhood condition. Int J Nurs Stud 2016;62: 44-59. doi: 10.1016/j. ijnurstu.2016.07.007.
20. Kim H, Rose KM. Concept analysis of family homeostasis. J Adv Nurs 2014;70(11):2450-68. doi: 10.1111/jan.12496
21. Oh S, Chang SJ. Concept analysis: family resilience. Open J Nurs 2014;4(13):980-90. doi:10.4236/ojn.2014.413105
22. Teunissen GJ, Lindhout P, Abma TA. Balancing loving and caring in times of chronic illness. Qual Res J 2018;18(3): 210-22. doi: 10.1108/QRJ-D-17-00030
23. Ratta CD. The art of balance: Preceptors’ experiences of caring for deteriorating patients. J Clin Nurs 2018;27 (19-20):3497-509. doi: 10.1111/jocn.14579.
24. Jonas S, Henrik E, Jessica H, et al. Keeping the family balance – adult daughters’ experiences of roles and strategies when supporting caring fathers. Eur J Social Work 2009;12(2): 233-45. doi.org/10.1080/13691450802567499
25. Walker W, Sque M. Balancing hope and despair at the end of life: The contribution of organ and tissue donation. J Crit Care 2016;32:73-8. doi: 10.1016/j.jcrc.2015.11.026.
26. Moberg JY, Larsen D, Brødsgaard A. Striving for balance between caring and restraint: young adults’ experiences with parental multiple sclerosis. J Clin Nurs 2016;26:1363-74. doi: 10.1111/jocn.13587.
27. Calvano L. Eldercare: The new frontier of work–family balance. Psychologist 2015;28:202-5.
28. Walker LO, Avant KC. Strategies for Theory Construction in Nursing. 5th ed. New Jersey: Pearson Education, Inc. 2011.
29. Lubetzki-Vilnai A, Kartin D. The effect of balance training on balance performance in individuals poststroke: a systematic review. J Neurol Phys Ther 2010;34(3):127-37. doi: 10.1097/ NPT.0b013e3181ef764d.
30. Zech A, Hübscher M, Vogt L, et al. Balance training for neuromuscular control and performance enhancement: A systematic review. J Athl Train 2010;45(4):392-403. doi: 10.4085/1062-6050-45.4.392.
31. O’Sullivan S, Schmitz T. Physical Rehabilitation. 5th ed. Philadelphia: F.A. Davis Company, 2007.
32. Sa SPC, Caldas CP, Rezende LK. Reflective analysis article: Analysis of the elderly family care concept. J Nurs UFPE on line 2016;10(7):2737-45. DOI: 10.5205/reuol.9106-80230-1- SM1007201653.
33. McLeod-Sordjan R. Death preparedness: a concept analysis. J Adv Nurs 2014;70(5):1008-19. doi: 10.1111/jan.12252. Epub 2013 Sep 15. PMID: 24102626
34. O’Toole S, Benson A, Lambert V, et al. Family communication in the context of pediatric epilepsy: A systematic review. Epilepsy Behav 2015;51:225-39.
35. Gadze ZP. Epilepsy in children-clinical and social aspects. Croatia: InTech. 2011.
36. Punaglom N, Kongvattananon P, Somprasert C. Experience of parents caring for their children with thalassemia: challenges and issues for integrative review. BKK Med J 2019;15(1):100-6. doi: 10.31524/bkkmedj.2019.02.018
37. Herzer M, Godiwala N, Hommel KA, et al. Family functioning in the context of pediatric chronic conditions. J Dev Behav Pediatr 2010;31(1):26-34. doi: 10.1097/ DBP.0b013e3181c7226b.
38. Thanakwang K, Isaramalai SA. Productive engagement in older adults: a concept analysis. Nurs Health Sci 2013;15(1):124-30. doi: 10.1111/nhs.12015.
39. Aziz A, Mohammed S, Aburaghif L. Burden of caregivers care for children with thalassemia at Babylon Child and Maternity Teaching Hospital / Babylon Governorate/Iraq. IOSR-JNHS 2015;4(6):82-7. 40. McCubbin HI, McCubbin MA, Patterson JM, et al. CHIP. Coping health inventory for parents: an assessment of parental coping patterns in the care of the chronically ill child. J Marria Family 1983;45(2):359-70. doi: 10.2307/351514
40. Punaglom N, Mangkarakere N. Integrative review for factors related to family functioning in the family living with the children with Thalassemia. BKK Med J 2020;16(2):242-9. doi: 10.31524/bkkmedj.2020.23.003
41. Desiningrum DR, Suminar DR, Surjaningrum ER. Psychological well-being among mothers of children with autism spectrum disorder: The role of family function. Human Indonesian Psychol J 2019;16(2):106-15.
42. Yang H, Luo S, Liang X, et al. The association between family impact and health-related quality of life of children with idiopathic central precocious puberty in Chongqing, China. Health Qual Life Outcomes 2021; 19(171):1-10. doi: 10.1186/s12955-021-01805-w