Spinal Muscular Atrophy Clinical Trial
Official title:
The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs
The purpose of this study is to assess carer burden, needs, and expectations of Spinal Muscular Atrophy Parents
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.
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