Challenges nurses face in providing care for patients with juvenile idiopathic arthritis

被引:1
作者
Fusama, Mie [1 ]
Nakahara, Hideko [2 ]
Miyamae, Takako [3 ]
Mori, Masaaki [4 ]
Urata, Yukitomo [5 ]
Kawahata, Kimito [6 ]
Kawahito, Yutaka [7 ]
Kojima, Masayo [8 ]
Sugihara, Takahiko [6 ]
Hashimoto, Motomu [9 ]
Murashima, Atsuko [10 ]
Yajima, Nobuyuki [11 ]
Matsui, Toshihiro [12 ]
机构
[1] Kansai Univ Int Studies, Hlth Sci Dept Nursing, 1-18 Aoyama Shijimi Cho, Miki, Hyogo 6730521, Japan
[2] Osaka Yukioka Coll Hlth Sci, Fac Hlth Sci, Osaka, Japan
[3] Tokyo Womens Med Univ, Inst Rheumatol, Dept Pediat Rheumatol, Tokyo, Japan
[4] Tokyo Med & Dent Univ, Grad Sch Med & Dent Sci, Dept Lifetime Clin Immunol, Tokyo, Japan
[5] Tsugaru Gen Hosp, Dept Rheumatol, Aomori, Japan
[6] St Marianna Univ, Sch Med, Dept Rheumatol & Allergol, Kawasaki, Japan
[7] Kyoto Prefectural Univ Med, Inflammat & Immunol, Kyoto, Japan
[8] Nagoya City Univ, Grad Sch Med Sci, Nagoya, Japan
[9] Osaka City Univ, Grad Sch Med, Dept Clin Immunol, Osaka, Japan
[10] Japan Drug Informat Inst Pregnancy, Natl Ctr Child Hlth & Dev, Tokyo, Japan
[11] Showa Univ, Sch Med, Dept Internal Med, Div Rheumatol, Tokyo, Japan
[12] Natl Hosp Org Sagamihara Natl Hosp, Clin Res Ctr Allergy & Rheumatol, Dept Rheumatol Res, Sagamihara, Japan
关键词
Communication; parent; collaboration; transition; independence; RHEUMATOLOGY;
D O I
10.1093/mr/roae041
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Objectives This study aimed at identifying challenges nurses face in caring for patients with juvenile idiopathic arthritis (JIA) in Japan.Methods Nurses certified by the Japan Rheumatism Foundation were asked to describe their challenges in caring for JIA patients. Data were analysed using qualitative content analysis.Results Responses were collected from 89 participants. Fifty-eight issues were identified from 40 participants with experience in caring for JIA patients. Sixteen categories emerged, which were grouped into five challenges: communication, understanding, expertise, system, and collaboration. Care for JIA patients included different challenges from adult patients with rheumatoid arthritis, such as complicated patient-parent relationships, inadequate patient independence, and insufficient patient information. Moreover, 76 issues from 49 participants with no experience were identified. Seven categories emerged, which were grouped into two challenges: expertise and opportunity. Issues included in expertise between both groups were similar. Even with no experience in caring for JIA patients, nurses recognized the importance of acquiring knowledge.Conclusions This is the first study in Japan regarding the difficulties nurses face in caring for JIA patients. Multidisciplinary team care and a comprehensive understanding of the patient journey, including relationships with guardians, acquaintances, and healthcare providers, are crucial to improve treatment outcome and overall patient quality of life.
引用
收藏
页码:185 / 193
页数:9
相关论文
共 15 条
[1]   Research agenda setting with children with juvenile idiopathic arthritis: Lessons learned [J].
Aussems, Karijn ;
Schoemaker, Casper G. ;
Verwoerd, Anouk ;
Ambrust, Wineke ;
Cowan, Katherine ;
Dedding, Christine .
CHILD CARE HEALTH AND DEVELOPMENT, 2022, 48 (01) :68-79
[2]   2018 update of the EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis [J].
Bech, Bianca ;
Primdahl, Jette ;
van Tubergen, Astrid ;
Voshaar, Marieke ;
Zangi, Heidi A. ;
Barbosa, Lurdes ;
Bostrom, Carina ;
Boteva, Boryana ;
Carubbi, Francesco ;
Fayet, Francoise ;
Ferreira, Ricardo J. O. ;
Hoeper, Kirsten ;
Kocher, Agnes ;
Kukkurainen, Marja Leena ;
Lion, Vivienne ;
Minnock, Patricia ;
Moretti, Antonella ;
Ndosi, Mwidimi ;
Nikolic, Milena Pavic ;
Schirmer, Michael ;
Smucrova, Hana ;
de la Torre-Aboki, Jenny ;
Waite-Jones, Jennifer ;
van Eijk-Hustings, Yvonne .
ANNALS OF THE RHEUMATIC DISEASES, 2020, 79 (01) :61-68
[3]   The importance of transition from pediatric to adult rheumatology care in juvenile idiopathic arthritis [J].
de Oliveira, Rodrigo Joel ;
Kishimoto, Simone Thiemi ;
de Souza, Debora Pessoa ;
Fernandes, Paula Teixeira ;
Marini, Roberto ;
Appenzeller, Simone .
EXPERT REVIEW OF CLINICAL IMMUNOLOGY, 2021, 17 (02) :155-161
[4]   EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases [J].
Foster, Helen E. ;
Minden, Kirsten ;
Clemente, Daniel ;
Leon, Leticia ;
McDonagh, Janet E. ;
Kamphuis, Sylvia ;
Berggren, Karin ;
van Pelt, Philomine ;
Wouters, Carine ;
Waite-Jones, Jennifer ;
Tattersall, Rachel ;
Wyllie, Ruth ;
Stones, Simon R. ;
Martini, Alberto ;
Constantin, Tamas ;
Schalm, Susanne ;
Fidanci, Berna ;
Erer, Burak ;
Dermikaya, Erkan ;
Ozen, Seza ;
Carmona, Loreto .
ANNALS OF THE RHEUMATIC DISEASES, 2017, 76 (04) :639-646
[5]   Challenges faced by nurses engaged in rheumatology care in Japan [J].
Fusama, Mie ;
Nakahara, Hideko ;
Gregg, Misuzu ;
Kuroe, Yuriko ;
Urata, Yukitomo ;
Kawahata, Kimito ;
Kawahito, Yutaka ;
Kojima, Masayo ;
Sugihara, Takahiko ;
Hashimoto, Motomu ;
Miyamae, Takako ;
Murashima, Atsuko ;
Mori, Masaaki ;
Yajima, Nobuyuki ;
Matsui, Toshihiro .
MODERN RHEUMATOLOGY, 2023, :711-719
[6]   Psychological support and patient-centered care for patients with rheumatoid arthritis: Nurses' opinions and practice in Japan [J].
Fusama, Mie ;
Motonaga, Takuro ;
Kuroe, Yuriko ;
Nakahara, Hideko .
INTERNATIONAL JOURNAL OF RHEUMATIC DISEASES, 2023, 26 (09) :1779-1787
[7]   Support as a crucial predictor of good compliance of adolescents with a chronic disease [J].
Kyngäs, H ;
Rissanen, M .
JOURNAL OF CLINICAL NURSING, 2001, 10 (06) :767-774
[8]   Juvenile idiopathic arthritis [J].
Martini, Alberto ;
Lovell, Daniel J. ;
Albania, Salvatore ;
Brunner, Hermine, I ;
Hyrich, Kimme L. ;
Thompson, Susan D. ;
Ruperto, Nicolino .
NATURE REVIEWS DISEASE PRIMERS, 2022, 8 (01)
[9]   Survey of the awareness of adult rheumatologists regarding transitional care for patients with juvenile idiopathic arthritis in Japan [J].
Matsui, Toshihiro ;
Matsumoto, Takumi ;
Hirano, Fumio ;
Tokunaga, Fumika ;
Okamoto, Keisuke ;
Tohma, Shigeto ;
Morio, Tomohiro ;
Kohsaka, Hitoshi ;
Mori, Masaaki .
MODERN RHEUMATOLOGY, 2018, 28 (06) :981-985
[10]   Questionnaire survey on transitional care for patients with juvenile idiopathic arthritis (JIA) and families [J].
Matsumoto, Takumi ;
Mori, Masaaki .
MODERN RHEUMATOLOGY, 2021, 31 (03) :691-696