Inclusion and equity in educational services for children with rare diseases: Challenges and opportunities

被引:17
作者
Verger, Sebastia [1 ,2 ,3 ]
Negre, Francisca [1 ,3 ]
Rossello, Maria Rosa [1 ,2 ,3 ]
Paz-Lourido, Berta [1 ,2 ,3 ,4 ]
机构
[1] Inst Res & Innovat Educ, Childhood Technol Educ & Div Res Grp, Balearic Islands, Spain
[2] Univ Balearic Isl, Educ Commun & Qual Hlth Res Grp, Palma De Mallorca, Spain
[3] Univ Balearic Isl, Dept Appl Pedag & Psychol Educ, Carretera Valldemossa,Km 7-5, Palma De Mallorca 07122, Balearic Island, Spain
[4] Univ Balearic Isl, Dept Nursing & Physiotherapy, Carretera Valldemossa,Km 7-5, Palma De Mallorca 07122, Balearic Island, Spain
关键词
Children; Rare diseases; School aged population; Chronic disease; QUALITY-OF-LIFE; CHRONIC ILLNESS; SCHOOL; KNOWLEDGE;
D O I
10.1016/j.childyouth.2020.105518
中图分类号
D669 [社会生活与社会问题]; C913 [社会生活与社会问题];
学科分类号
1204 ;
摘要
Inclusion of children with rare diseases in school poses challenges for the educational services, teachers and other school staff. This research aimed to identify these challenges based on information provided by children with rare diseases, families and school personnel. A qualitative study was conducted using the social-critical paradigm as theoretical perspective. This study included 43 participants. Data was obtained through in-depth interviews and focus groups and analysed with discourse analysis. A total of 10 categories were identified that influence a healthy, inclusive and equal education experience in school: Diagnosis, Official recognition, Accessibility, Absences, Coordination, Curricular adaptations, Homework, Autonomy, Personnel resources, Peer support. The provision of appropriate education and care is a complex process influenced by the health condition of the individual child, the level of empowerment of families, the availability of resources and the commitment of the school and health care providers. The delay or lack of a clear diagnosis is among the challenges to obtaining the adaptations required.
引用
收藏
页数:6
相关论文
共 50 条
  • [31] A qualitative exploration of children's lives with rare diseases
    Buckle, Niamh
    Rogers, Yvonne
    O'Toole, Doris
    McNulty, Sandra
    Kroll, Thilo
    Gibbs, Lisa
    Somanadhan, Suja
    CHILD CARE HEALTH AND DEVELOPMENT, 2024, 50 (04)
  • [32] What About School? Educational Challenges for Children and Adolescents With Cancer
    Donnan, Barbara M.
    Webster, Tracey
    Wakefield, Claire E.
    Dalla-Pozza, Luciano
    Alvaro, Frank
    Lavoipierre, Jenny
    Marshall, Glenn M.
    AUSTRALIAN EDUCATIONAL AND DEVELOPMENTAL PSYCHOLOGIST, 2015, 32 (01) : 23 - 40
  • [33] Developing therapies for rare tumors: opportunities, challenges and progress
    Bradford, Diana
    Reilly, Karlyne M.
    Widemann, Brigitte C.
    Sandler, Abby
    Kummar, Shivaani
    EXPERT OPINION ON ORPHAN DRUGS, 2016, 4 (01): : 93 - 103
  • [34] Clinical research for rare disease: Opportunities, challenges, and solutions
    Griggs, Robert C.
    Batshaw, Mark
    Dunkle, Mary
    Gopal-Srivastava, Rashmi
    Kaye, Edward
    Krischer, Jeffrey
    Nguyen, Tan
    Paulus, Kathleen
    Merkel, Peter A.
    MOLECULAR GENETICS AND METABOLISM, 2009, 96 (01) : 20 - 26
  • [35] On promoting understanding and equity through compassionate educational practice: Toward a new inclusion
    Bilias-Lolis, Evelyn
    Gelber, Nicholas W.
    Rispoli, Kristin M.
    Bray, Melissa A.
    Maykel, Cheryl
    PSYCHOLOGY IN THE SCHOOLS, 2017, 54 (10) : 1229 - 1237
  • [36] Listening to Students' Voices to Build Inclusion and Educational Equity: Design and Validation of a Questionnaire
    Arnaiz, Pilar
    De Haro, Remedios
    Alcaraz, Salvador
    Maria Caballero, Carmen
    REMIE-MULTIDISCIPLINARY JOURNAL OF EDUCATIONAL RESEARCH, 2019, 9 (03): : 258 - 292
  • [37] Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis
    Coca, Juan R. R.
    Gomez-Redondo, Susana
    Soto-Sanchez, Alberto
    Lozano-Blasco, Raquel
    Romero-Gonzalez, Borja
    INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH, 2023, 20 (02)
  • [38] New ethical challenges in the management of rare pediatric diseases with innovative therapies
    Dufosset, M.
    Tosello, B.
    Le Coz, P.
    Chabrol, B.
    ARCHIVES DE PEDIATRIE, 2021, 28 (04): : 311 - 318
  • [39] Value based healthcare for rare diseases: efficiency, efficacy, equity
    Fantini, Bernardino
    Vaccaro, Concetta Maria
    ANNALI DELL ISTITUTO SUPERIORE DI SANITA, 2019, 55 (03): : 251 - 257
  • [40] Progress, challenges and global approaches to rare diseases
    Groft, Stephen C.
    Posada, Manuel
    Taruscio, Domenica
    ACTA PAEDIATRICA, 2021, 110 (10) : 2711 - 2716