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

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.

Materials and methods

The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected. The childrens' parents completed the Family Needs Survey and the Zarit Caregiver Burden Scale.

Results

According to the results of the Family Needs Survey, it was found that information was the most common requirement, and this was independent of the l

SUBMITTER: Evkaya Acar A 

PROVIDER: S-EPMC8655964 | biostudies-literature | 2021 Jul

REPOSITORIES: biostudies-literature