The experiences and needs of parents of children with juvenile idiopathic arthritis in coping with the child’s disease; pp. 230–238

Proceedings of the Estonian Academy of Sciences

article

Mare Tupits¹  Sirje Tarraste¹ 

[1] Tallinn Health Care College;Tallinn Children’s Hospital

关键词: juvenile idiopathic arthritis;    child;    parent;    experience;    need;    coping;   

DOI  :  10.3176/proc.2023.3.05

学科分类：内科医学

来源: Teaduste Akadeemia Kirjastus

【 摘 要 】

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.

【 授权许可】

CC BY