An Opportunity for Injury Prevention Among Caregivers of Children With Medical Complexity: A Pilot Study of Caregiver Health

BACKGROUND AND PURPOSE: Caregivers of children with complex medical needs and disabilities face multiple ongoing challenges, including injury prevention. Despite being high utilizers of health care, these families are often without a patient-centered medical home. As a result of diffusion of responsibility, inconsistent care coordination, and attention to more acute issues, injury prevention for caregivers remains largely unaddressed. This pilot study aimed to understand the challenges participants faced in managing their children’s needs and impairments, reveal whether caregivers received injury prevention training and evaluate its adequacy, and identify areas for occupational therapy to better meet caregiver needs.

METHOD: This exploratory pilot study used a convenience sample (N = 20) of English-speaking primary caregivers of children enrolled in a pediatric complex care program at an urban hospital. A 57-item questionnaire was developed that included parent demographics; child demographics and functional ability; caregiving physical burden; environmental, familial, and work factors; injury history; and medical team involvement. Participants were interviewed in person or by phone. Descriptive statistical and qualitative analyses were used to synthesize results.

RESULTS: The 20 participants were aged 22–50 and lived with and cared for a child with medical complexity. The majority of participants rated their overall health and physical fitness as good. The children were aged 1–14 and weighed 11–85 lb. Of the participants, 80% reported that their child required physical assistance and was dependent for basic mobility, 70% reported lifting or transferring their child 11 or more times per day, only one (5%) used a hydraulic lift, and 95% had had at least one incident of musculoskeletal pain or injury related to caregiving. Substantial percentages of participants reported at least one incident of pain in the lower back (85%); upper back (60%); hand or wrist (55%); shoulder, feet, or ankle (50%); and neck or knee (45%). Participants most frequently reported toileting or diapering as their most difficult caregiving task. Other burdensome activities included lifting from low surfaces, bending for prolonged periods, carrying the child and equipment (e.g., car seat, wheelchair) simultaneously, and taking stairs.

This high degree of physical burden related to caregiving led to activity limitation and decreased occupational engagement. Although most participants (70%) were concerned about the potential for self-injury as a result of caregiving, only one had received education, by a nurse practitioner, about safe transfers. Although 75% stated that they might seek information about injury prevention, 20% said they would not ask for help. Only three stated that they would ask their child’s occupational or physical therapist.

CONCLUSION: This pilot study suggests that caregivers of children with medical complexity are likely to experience musculoskeletal pain and injury related to daily caregiving occupations. Although these participants had frequent encounters with a broad array of medical professionals, including occupational therapists, their needs regarding injury prevention were not being met.

IMPACT STATEMENT: Caregivers of children with medical complexity are a vulnerable and underserved group. They would benefit from targeted injury prevention via dynamic training for safe lifting techniques with proper body mechanics to meet their child’s changing size and mobility needs over time. Injury prevention is within the occupational therapy scope of practice and could distinguish occupational therapy’s role in the emerging practice area of pediatric complex care.

References

Bardak, A. N., Erhan, B., & Gündüz, B. (2012). Low back pain among caregivers of spinal cord injured patients. Journal of Rehabilitation Medicine, 44, 858–861. https://doi.org/10.2340/16501977-1043

Roberts, K., & Lawton, D. (2002). Acknowledging the extra care parents give their disabled children. Child: Care, Health and Development, 27, 307–319. https://doi.org/10.1046/j.1365-2214.2001.00178.x

Tong, H. C., Haig, A. J., Nelson, V. S., Yamakawa, K. S.-J., & Shin, K. Y. (2003). Low back pain in adult female caregivers of children with physical disabilities. Archives of Pediatric and Adolescent Medicine, 157, 1128–1133. https://doi.org/10.1001/archpedi.157.11.1128

Walters, T., Collins, J., Galinsky, T., & Caruso, C. (2006). NIOSH research efforts to prevent musculoskeletal disorders in the healthcare industry. Orthopaedic Nursing, 25, 380–389. https://doi.org/10.1097/00006416-200611000-00007