Caregiver and Adolescent Perspectives on Giving and Receiving Care After NonEmergency Surgery: A Qualitative Study

Objectives: Over 1.5 million adolescents undergo surgery each year in the United States. While surgery is performed to improve pain and physical functioning, there may be temporary disability and an increased reliance on caregivers during recovery. Caregivers not accustomed to providing this level of care for adolescents used to greater independence may struggle. We sought to better understand the dyadic experience of at-home care for adolescent patients after nonemergency surgery. Methods: We conducted semi-structured interviews with adolescent patients aged between12and 17 years and an associated caregiver, separately, 2 weeks following nonemergency surgery at a tertiary care pediatric hospital. Interviews were analyzed using latent manifest content analysis concurrent with data collection. Recruitment occurred until thematic saturation was reached. Results: Semi-structured interviews were conducted among 31 adolescent-caregiver dyads. Sixteen caregivers and 12 adolescents described needing or providing help with activities of daily living (ADLs) and/or instrumental ADLs. Four themes emerged: (1) caregiver feelings of overwhelm, primarily among those helping with ADLs; (2) care activities described as something a "good caregiver" does contrasted with the more neutral way in which adolescents described needing help; (3) discrepancies between caregiver and adolescent perspectives regarding increased family interactions resulting from needing or providing care; and (4) the importance of peer friendships to adolescents throughout surgical recovery. Discussion: Half of the adolescents and caregivers reported providing or requiring significant assistance with basic care needs after surgery. While some caregivers felt overwhelmed, others derived satisfaction from being a "good" caregiver and increased family time; adolescents felt more neutral about these interactions. Connections with friends (in-person or online) were helpful to adolescents. Results suggest that interventions directed toward improving caregiver support and helping them find positive aspects of caregiving, as well as encouraging adolescent connection with their friends may improve the perceived quality of recovery in this population.