Journal of pediatric nursing · 2025
Caring at Home for Children with Medical Complexity: A study on Family Caregivers' Burden, Fatigue, and Musculoskeletal Pain.
СтатьяСравнительное исследованиеНазвание и аннотация: Перевод в очереди
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Akyurek Gokcen, Tekin Vera, Gündoğmuş Ezginur
Аннотация
BACKGROUND: Children with medical complexity (CMC) require intensive, long-term care involving multiple systems, medical technologies, and frequent hospitalizations. This shift of care responsibilities from hospitals to families has increased the physical and psychological burden on caregivers, particularly parents. While literature reports on psychological impacts, fewer studies have simultaneously addressed physical factors such as fatigue and musculoskeletal pain.
METHODS: In this cross-sectional, descriptive comparative study based on self-report instruments, participants were divided into two groups: caregivers of children with special needs and medical complexity (Group 1, n = 62) and caregivers of children with special needs but without medical complexity (Group 2, n = 73). Participants were recruited through social media platforms targeting caregivers of children with special needs. Data were collected using a sociodemographic form, the BAKAS Care Impact Scale, the Fatigue Severity Scale (FSS), and the Extended Scandinavian Musculoskeletal System Questionnaire. Independent t-tests were used for intergroup comparisons (p < 0.05).
RESULTS: Caregivers of children with medical complexity had significantly higher caregiver burden (p = 0.001) and fatigue levels (p = 0.029) compared to the other group. In both groups, the most common musculoskeletal complaint was low back pain, with a higher frequency and severity in Group 1. These results suggest that caregivers of medically complex children experience higher reported burden and fatigue.
CONCLUSION: The study highlights the multifaceted burden experienced by caregivers of CMC children, emphasizing the need for integrated support addressing both physical and emotional health. Ergonomic interventions, respite care access, and psychosocial supports are critical to reducing caregiver strain and ensuring sustainable caregiving.
METHODS: In this cross-sectional, descriptive comparative study based on self-report instruments, participants were divided into two groups: caregivers of children with special needs and medical complexity (Group 1, n = 62) and caregivers of children with special needs but without medical complexity (Group 2, n = 73). Participants were recruited through social media platforms targeting caregivers of children with special needs. Data were collected using a sociodemographic form, the BAKAS Care Impact Scale, the Fatigue Severity Scale (FSS), and the Extended Scandinavian Musculoskeletal System Questionnaire. Independent t-tests were used for intergroup comparisons (p < 0.05).
RESULTS: Caregivers of children with medical complexity had significantly higher caregiver burden (p = 0.001) and fatigue levels (p = 0.029) compared to the other group. In both groups, the most common musculoskeletal complaint was low back pain, with a higher frequency and severity in Group 1. These results suggest that caregivers of medically complex children experience higher reported burden and fatigue.
CONCLUSION: The study highlights the multifaceted burden experienced by caregivers of CMC children, emphasizing the need for integrated support addressing both physical and emotional health. Ergonomic interventions, respite care access, and psychosocial supports are critical to reducing caregiver strain and ensuring sustainable caregiving.