The most common rheumatological disease in children is juvenile idiopathic arthritis (JIA). At the beginning of the disease, the predominant emotions of the parents are growing anxiety, fear, confusion and denial of the disease. In Estonia, parents of children suffering from JIA do not receive enough support and information about their child’s health problem or social benefits and services.
The aim of the thesis is to describe the experiences and needs of parents of children with JIA in coping with the child’s disease.
The design of the research is qualitative and descriptive. The data were collected through semi-structured interviews and analysed by the inductive content analysis method. The interviews were carried out in 2021 with eight subjects participating in the research.
The authors of this research found that the parents’ experiences in coping with the child’s disease consisted of adaptation to the disease, feelings of the parents regarding their child’s situation, family relations, nature of the disease and various support mechanisms. At the beginning of the disease, fear and anxiety were experienced. The needs of parents were related to supporting the child’s coping with the disease, the treatment process and school requirements. In order to do that, parents sought psychological help. Regarding the treatment process, the parents’ desire to cooperate with healthcare workers grew as the disease exacerbated. More understanding was needed from teachers regarding the obstacles and limitations due to the child’s disabilities.
In conclusion, when adapting to the child’s disease, parents experienced both positive and negative feelings as well as a lack of information. Families should feel supported by healthcare professionals, local municipality and educational institutions.
Anthony, K. K., Bromberg, M. H., Gil, K. M. and Schanberg, L. E. 2011. Parental perceptions of child vulnerability and parent stress as predictors of pain and adjustment in children with chronic arthritis. Child Health Care, 40, 53–69.
https://doi.org/10.1080/02739615.2011.537938
Asula, M.-H. 2014. Stressiga toimetulekut mõjutavad tegurid Eesti krooniliselt haigete laste emade näitel (Factors affecting stress management on the example of mothers of chronically ill children in Estonia). Master’s thesis. University of Tartu, Estonia (in Estonian).
Barut, K., Adrovic, A., Sahin, S. and Kasapcopur, Ö. 2017. Juvenile idiopathic arthritis. Balcan Med. J., 34(2), 90–101.
https://doi.org/10.4274/balkanmedj.2017.0111
Bruns, A., Hilário, M. O. E., Jennings, F., Silva, C. A. and Natour, J. 2008. Quality of life and impact of the disease on primary caregivers of juvenile idiopathic arthritis patients. Joint Bone Spine, 75(2), 149–154.
https://doi.org/10.1016/j.jbspin.2007.07.007
Cassidy, J. T., Petty, R. E., Laxer, R. M. and Lindsley, C. B. 2011. Textbook of Pediatric Rheumatology. 6th ed. Elsevier Health Sciences, Saunders/Elsevier, Philadelphia.
Gheibizadeh, M., Gholami, Z., Bassaknejad, S. and Cheraghian, B. 2020. Coping strategies of parents with chronic ill children hospitalized in educational hospitals, Ahvaz-Iran. Int. J. Pediatr., 5(10), 5813–5825.
https://doi.org/10.22038/ijp.2017.23834.2014
Global Healthy Living Foundation. 2018. Caring for Children with Juvenile Idiopathic Arthritis (JIA): A Parent’s Guide.
https://creakyjoints.org/wp-content/uploads/2018/10/CreakyJoints_Juvenlie_Idiopathic_Arthritis_Patient_Guidelines.pdf
Kyngäs, H. 2020. Inductive content analysis. In The Application of Content Analysis in Nursing Science Research (Kyngäs, H., Mikkonen, K. and Kääriäinen, M., eds)
https://doi.org/10.1007/978-3-030-30199-6_2
Laanemets, R. 2013. Lapse haigusega seotud teabe saamine, selle olulisus ja teabeallikad juveniilse idiopaatilise artriidiga kooliealiste laste vanemate jaoks (Getting information about the child’s disease, its relevance and sources of information for parents who have school-aged children with juvenile idiopatic arthritis). Master’s thesis. University of Tartu, Estonia (in Estonian).
Mawani, N., Amine, B., Rostom, S., Badri, D. E., Ezzahri, M., Moussa, F. et al. 2013. Moroccan parents caring for children with juvenile idiopathic arthritis: positive and negative aspects of their experiences. Pediatric Rheumatol., 11(39).
https://doi.org/10.1186/1546-0096-11-39
McKeever, A. and Kelly, M. M. 2015. Growing up with juvenile idiopathic arthritis. MCN Am. J. Matern. Child Nurs., 40(1), 8–15.
https://doi.org/10.1097/NMC.0000000000000096
McNeill, T. 2004. Fathers’ experience of parenting a child with juvenile rheumatoid arthritis. Qual. Health Res., 14(4), 526–545.
https://doi.org/10.1177/1049732303262374
Munhall, P. L. 2012. Nursing Research: A Qualitative Perspective. 5th ed. Jones & Bartlett Learning, Sudbury.
Oberle, E. J., Harris, J. G. and Verbsky, J. W. 2014. Polyarticular juvenile idiopathic arthritis – epidemiology and management approaches. J. Clin. Epidemiol., 6, 379–393.
https://doi.org/10.2147/clep.s53168
Pishkuhi, M., Ahmadi, M., Shoraka, H. and Chegeni, M. 2018. Parents’ experience of caring children with cancer: a qualitative study with phenomenological approach. J. Compr., 9(4).
https://doi.org/10.5812/compreped.65545
Ramsey, R. R., Ryan, J. L., Bonner, M. S., Fedele, D. A., Mullins, L. L., Jarvis, J. N. and Chaney, J. M. 2013. The mediating role of children’s causal attributions in the parent distress-child depressive symptom association in juvenile rheumatic disease. J. Dev. Phys. Disabil., 25, 285–296.
https://doi.org/10.1007/s10882-012-9306-0
Tervisestatistika ja terviseuuringute andmebaas (Health Statistics and Health Research Database). EH12: Esmashaigestumus 100 000 elaniku kohta soo ja vanuserühma järgi (First time illness per 100 000 inhabitants by gender and age) (in Estonian).
https://statistika.tai.ee/pxweb/et/Andmebaas/Andmebaas__02Haigestumus__01Esmashaigestumus/EH12.px/
Yuwen, W., Lewis, F. M., Walker, A. J. and Ward, T. M. 2017. Struggling in the dark to help my child: parents’ experience in caring for a young child with juvenile idiopathic arthritis. J. Pediatr., 37, e23–e29.
https://doi.org/10.1016/j.pedn.2017.07.007
