Down syndrome is a chronic multisystem condition that not only affects individuals diagnosed with the disorder but also has a profound impact on their caregivers and families. Numerous studies have explored various aspects of life and overall quality of life for both patients and their families. Our research specifically focuses on the caregiver burden scale and was conducted at the Down Syndrome Outpatient Clinic at the Policlinic Hospital of Federico II, which operates every Thursday. The study utilized a questionnaire consisting of 10 questions, with a total of 100 patients participating. These questions aimed to evaluate different dimensions of caregivers’ lives, including social, economic, and psychological factors. The scoring system is based on the Burden Scale for Family Caregivers (BSCF), which ranges from 0 (minimal burden) to 3 (maximum burden). Our findings reveal that certain aspects of caregiving are more significantly affected than others. For example, the median score for physical health is 105, indicating that this area is the most impacted by Down syndrome. In contrast, the median score for psychological health stands at 68.2, suggesting it is the least affected area.
The impact of Down syndrome on patients' caregivers: a survey of an Italian paediatric cohort
Palermi, Stefano;
2025-01-01
Abstract
Down syndrome is a chronic multisystem condition that not only affects individuals diagnosed with the disorder but also has a profound impact on their caregivers and families. Numerous studies have explored various aspects of life and overall quality of life for both patients and their families. Our research specifically focuses on the caregiver burden scale and was conducted at the Down Syndrome Outpatient Clinic at the Policlinic Hospital of Federico II, which operates every Thursday. The study utilized a questionnaire consisting of 10 questions, with a total of 100 patients participating. These questions aimed to evaluate different dimensions of caregivers’ lives, including social, economic, and psychological factors. The scoring system is based on the Burden Scale for Family Caregivers (BSCF), which ranges from 0 (minimal burden) to 3 (maximum burden). Our findings reveal that certain aspects of caregiving are more significantly affected than others. For example, the median score for physical health is 105, indicating that this area is the most impacted by Down syndrome. In contrast, the median score for psychological health stands at 68.2, suggesting it is the least affected area.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
