The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs

ACAR A. E., Saygi E. K., Imamoglu S., Ozturk G., ÜNVER O., Ergenekon P., ...More

TURKISH ARCHIVES OF PEDIATRICS, vol.56, no.4, pp.366-373, 2021 (ESCI, Scopus, TRDizin) identifier identifier identifier

  • Publication Type: Article / Article
  • Volume: 56 Issue: 4
  • Publication Date: 2021
  • Doi Number: 10.5152/turkarchpediatr.2021.20117
  • Journal Name: TURKISH ARCHIVES OF PEDIATRICS
  • Journal Indexes: Emerging Sources Citation Index (ESCI), Scopus, TR DİZİN (ULAKBİM)
  • Page Numbers: pp.366-373
  • Keywords: Care burden, family needs, social support, spinal muscular atrophy, QUALITY-OF-LIFE, FAMILY NEEDS, CHILDREN, ADOLESCENTS, PARENTS, RELIABILITY, VALIDITY, ANXIETY, STRESS
  • Marmara University Affiliated: Yes

Abstract

Aim: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations.