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

Özet

Aim: This study aims to reveal the problems faced by families of children with spinal muscularatrophy (SMA), by evaluating their care burden, needs, and expectations.Materials and Methods: The participants were the primary caregivers of 34 children betweenthe 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, functionallevels of the participants, and the characteristics of families were collected. The childrens’ parentscompleted 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 wasthe most common requirement, and this was independent of the level of education. Accordingto the Caregiver Burden Scale, it was recorded that 64.7% of the caregivers were under mild/moderate burden. While there was a moderate correlation (r = 0.574; P < .001) between theCaregiver Burden Scale and the Family Needs Survey, it was observed that the functional levelof the child was not associated with family needs and caregiver burden.Conclusions: Our study suggests that the needs of families of SMA patients, especially relatedto income level, have changed. The caregivers’ burden is not directly related to the incomelevel or the functional level of the child. Families’ need for information should also be prioritizedwithin the rehabilitation program.