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A child's hospitalization affects the entire family system, with parents/caregivers reporting a myriad of stressors challenging family dynamics and coping efforts. Legacy-oriented interventions employ play- and arts-based techniques to promote collaboration and communication in families of hospitalized children and thereby foster resilience. Although offered in most children's hospitals, little is known about the impact of these interventions on pediatric patients and families, or the ways pediatric health care providers, parent/caregivers, and pediatric patients understand and describe the concept of legacy. This study explored the legacy perceptions of parents/caregivers of hospitalized children on acute or critical care units in an academic medical center. Ninety-three parents/caregivers completed a semi-structured, in-depth interview regarding their perceptions of the concept of legacy. Analysis yielded four themes: 1) legacy is a transgenerational process; 2) legacies can be actions, accomplishments, and experiences; 3) legacy can be a powerful tool for education and change; and 4) a good' legacy can be left in different ways. These findings together indicate that capturing and integrating a family's unique history, stories, strengths, and experiences appear to be a desirable and useful component of family-centered health care. Additionally, when considered along previous research and practice, it appears medical and psychosocial care providers should assess, recognize, and involve parent/caregivers' experiences with and understandings of legacy into legacyoriented interventions or activities, as well as other aspects of care related to patient and family coping and functioning.
Key Words: Pediatric, qualitative, caregivers, caretaking, health care.
Nearly 6 million overnight hospital stays are recorded for children each year in the United States (McDermott et al., 2017). Whether a child is admitted for a common pediatric ailment or a life-threatening and life-changing illness, pediatric hospitalization impacts entire family systems by challenging family relationships, coping mechanisms, roles, and responsibilities (Foster et al., 2016). Parents/caregivers have identified several significant stressors when their child is hospitalized, namely lack of information about the child's condition or procedures, the unfamiliarity of the hospital environment, separation from home and family, and uncertainty about illness and treatment plans (Canga et al., 2020). If these stressors and parent/caregiver coping needs are left unaddressed, chronic health care-related stress can impair quality of life and lead to long-lasting post-traumatic stress symptoms or disorders for parents/ caregivers and their children (Price et...