Spiritual well-being, caregiver burden, depression, and quality of life in parents of children with spinal muscular atrophy: A cross-sectional study
Medicine, cilt.105, sa.25, 2026 (SCI-Expanded, Scopus)
- Yayın Türü: Makale / Tam Makale
- Cilt numarası: 105 Sayı: 25
- Basım Tarihi: 2026
- Doi Numarası: 10.1097/md.0000000000049156
- Dergi Adı: Medicine
- Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Scopus, BIOSIS, CINAHL, EMBASE, MEDLINE, Directory of Open Access Journals
- Anahtar Kelimeler: caregiver burden, caregivers, depression, quality of life, spinal muscular atrophy, spiritual well-being
- İnönü Üniversitesi Adresli: Evet
Özet
Spinal muscular atrophy (SMA) imposes substantial physical and emotional burdens on families, particularly on primary caregivers. Although spiritual well-being has been linked to psychological resilience in chronic diseases, its relationship with caregiver burden, depressive symptoms, and quality of life in caregivers of children with SMA remains insufficiently studied. This study investigated these associations in parents of children with SMA. This cross-sectional online survey included 51 parents of children with genetically confirmed SMA (types I-III). Participants completed questionnaires including sociodemographic and clinical characteristics, the Spiritual Well-Being Scale, Zarit Burden Interview, Patient Health Questionnaire-9 (PHQ-9), and WHOQOL-8.Tr. Correlation and exploratory regression analyses were performed to examine relationships between study variables. The mean Spiritual Well-Being Scale, Zarit Burden Interview, Patient Health Questionnaire-9, and WHOQOL-8.Tr scores were 119.2 ± 15.5, 49.5 ± 12.8, 11.2 ± 5.0, and 25.4 ± 5.8, respectively. Spiritual well-being was negatively correlated with caregiver burden (r = -0.492, P < .001) and depressive symptoms (r = -0.380, P = .002), and positively correlated with quality of life (r = 0.486, P < .001). Caregivers of children requiring medical devices had higher burden and depressive symptom scores and lower spiritual well-being scores (P < .05). Employment and higher income levels were associated with better quality of life and lower caregiver burden (P < .05). Caregivers using prayer as a coping strategy reported higher spiritual well-being scores (P = .007). In exploratory regression analyses, higher spiritual well-being scores were associated with lower caregiver burden and depressive symptoms and with higher quality-of-life scores. Higher spiritual well-being was associated with lower caregiver burden and depressive symptoms and with better quality of life among parents of children with SMA. Given the cross-sectional design and limited sample size, these findings should be interpreted cautiously. Further longitudinal and multicenter studies are needed to better clarify the role of spiritual well-being in caregiver outcomes among families affected by SMA.