Defining the experiences of adolescent patients with multiple sclerosis in transition from pediatric care to adult care


Yilmaz D. Y., YARDIMCI F., Erdemir F., KARABUDAK R.

MULTIPLE SCLEROSIS AND RELATED DISORDERS, vol.68, 2022 (SCI-Expanded) identifier identifier identifier

  • Publication Type: Article / Article
  • Volume: 68
  • Publication Date: 2022
  • Doi Number: 10.1016/j.msard.2022.104123
  • Journal Name: MULTIPLE SCLEROSIS AND RELATED DISORDERS
  • Journal Indexes: Science Citation Index Expanded (SCI-EXPANDED), Scopus, EMBASE, MEDLINE
  • Keywords: Multiple sclerosis, Chronic disease, Transition, Young adult, Qualitative research, YOUNG-PEOPLE, CHECKLIST, INSIGHTS, SERVICES, ILLNESS, IMPACT
  • Hacettepe University Affiliated: Yes

Abstract

Background: The aim of this study was to evaluate the experiences of patients aged 18-24 years who were diagnosed with multiple sclerosis before the age of eighteen, during the transition from pediatric care to adult care. Methods: This research was in the type of phenomenological qualitative research. Focus group interviews were conducted between December 2020 and October 2021 with seventeen participants who had been diagnosed with multiple before the age of eighteen, aged 18-24, voluntarily having agreed to participate in the study. The views of the participants were analyzed with Maxqda Plus v10 data analysis software, and thematic coding was created by the researchers. Results: Of the participants, 58.9% were female, 76.5% had their first attack after the age of 13, and it was determined that 64.7% of them took oral tablets for therapeutic purposes. As a result of the content analysis; four thematic codes emerged: (a) Perceptions of the Illness and Pediatric Clinic Before Transition, (b) Perceptions of the Disease and Adult Clinic After Transition to the Adult Clinic, (c) Expectations from the Clinic They Received Service from During Their Childhood, (d) Expectations from the Clinic They Used in Adulthood. Conclusion: This study revealed that individuals with multiple sclerosis did not receive any medical care regarding the transition from pediatric clinics to adult clinics. Describing the experiences of young adult patients with multiple sclerosis in pediatric clinics and their experiences in the transition to adult clinics allows for the definition of comprehensive, individualized and transitional nursing interventions.