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

Area of Science:

• Pediatric Neurology
• Genetics and Genetic Diseases
• Rehabilitation Medicine

Background:

• Spinal muscular atrophy (SMA) is a rare genetic neuromuscular disorder affecting motor neurons.
• Families of children with SMA face unique challenges related to caregiving, financial strain, and emotional well-being.
• Understanding the specific needs and burdens of these families is crucial for developing effective support systems.

Purpose of the Study:

• To identify the primary challenges encountered by families caring for children with SMA.
• To evaluate the care burden experienced by these families.
• To assess the specific needs and expectations of families regarding support and information.

Main Methods:

• A cohort of 34 primary caregivers of children (aged 0-18) diagnosed with SMA types 1, 2, and 3 participated.
• Data collected included medical history, child's functional level, and family characteristics.
• Caregivers completed the Family Needs Survey and the Zarit Caregiver Burden Scale.

Main Results:

• Information emerged as the most significant unmet need for families, irrespective of educational background.
• A majority of caregivers (64.7%) reported experiencing mild to moderate burden.
• A moderate correlation was found between caregiver burden and family needs, but child's functional level did not correlate with burden or needs.

Conclusions:

• The needs of families with SMA patients, particularly concerning financial aspects, have evolved.
• Caregiver burden is not solely determined by income or the child's functional status.
• Prioritizing families' need for information within rehabilitation programs is essential for comprehensive care.