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

Marmara University

Status: Completed

Conditions: Caregiver Burden; Spinal Muscular Atrophy

Treatments: Other: Hammersmith Functional Motor Scale Expanded (HMFSE); Behavioral: Family Needs Survey (FNS); Behavioral: Zarit Burden Interview Scale; Other: Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)

Study type: Observational

Funder types: Other

Identifiers

NCT04228718

09.2019.728

Details and patient eligibility

About

The purpose of this study is to assess carer burden, needs, and expectations of Spinal Muscular Atrophy Parents

Full description

Spinal muscular atrophy (SMA) is a group of neuromuscular diseases involving the spinal cord anterior horn cells and brain stem motor nuclei. It is followed by programmed cell death. It progresses with symmetrical weakness and atrophy of voluntary muscles throughout the body. It leads to a decrease in mobility with progressive loss of power, and pulmonary function impairment with the involvement of the respiratory muscles.

Families who are confronted with these problems that arise after the birth of the baby or shortly after birth have a serious adaptation problem. When the course of the disease and its incurability are explained, patients and their families are under severe stress. Physical and emotional health is worse than normal healthy growing children's parents.

They need information, psychological and social support. The role of the family is very important in the life of children with disabilities. Family-oriented care; has been developed to facilitate the care process of children with special needs and to help their families. The main characteristics of the family-oriented approach are that families know their children in the best way, that each family is unique and different, and that family and community support is provided for the child's functionality. The assessment of family function helps the planning and management of treatment according to the concerns of the family. The education of the family, the socio-cultural structure and the psychological approach of the parents play an important role in the development of the child with SMA.

The aim of this study was to evaluate the care burden, needs and expectations of SMA parents and to reveal the problems clearly; so that this information can be used in rehabilitation planning and interpretation of results.

Enrollment: 34 patients

Sex: All

Ages: 1 day to 18 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

1. Patients with spinal muscular atrophy at between the ages of 0-18
2. Agree to participate in the study

Exclusion criteria

1-Refuse to participate in the study