{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T22:27:43Z","timestamp":1781648863498,"version":"3.54.5"},"reference-count":64,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"4","content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2023,5]]},"abstract":"<jats:p>Caregivers of youth with sickle cell disease (SCD) influence the youth disease management and psychosocial outcomes. Effective caregiver coping is important for improving disease management and outcomes since caregivers often report high disease-related parenting stress. This study characterizes caregiver coping and examines its relation to youth clinic nonattendance and health-related quality of life (HRQOL). Participants were 63 youth with SCD and their caregivers. Caregivers completed the Responses to Stress Questionnaire\u2013SCD module to assess primary control engagement (PCE; attempts to change stressors or reactions to stress), secondary control engagement (SCE; strategies to adapt to stress), and disengagement (avoidance) coping. Youth with SCD completed the Pediatric Quality of Life Inventory\u2013SCD module. Medical records were reviewed for the hematology appointment nonattendance rates. Coping factors were significantly different (<jats:italic toggle=\"yes\">F<\/jats:italic> [1.837, 113.924]=86.071, <jats:italic toggle=\"yes\">P<\/jats:italic>&lt;0.001); caregivers reported more PCE (<jats:italic toggle=\"yes\">M<\/jats:italic>=2.75, <jats:italic toggle=\"yes\">SD<\/jats:italic>=0.66) and SCE (<jats:italic toggle=\"yes\">M<\/jats:italic>=2.78, <jats:italic toggle=\"yes\">SD<\/jats:italic>=0.66) than disengagement (<jats:italic toggle=\"yes\">M<\/jats:italic>=1.75, <jats:italic toggle=\"yes\">SD<\/jats:italic>=0.54) coping. Responses to short-answer questions corroborated this pattern. Greater caregiver PCE coping was associated with lower youth nonattendance (\u03b2=\u22120.28, <jats:italic toggle=\"yes\">P<\/jats:italic>=0.050), and greater caregiver SCE coping was related to higher youth HRQOL (\u03b2=0.28, <jats:italic toggle=\"yes\">P<\/jats:italic>=0.045). Caregiver coping is related to improved clinic attendance and HRQOL in pediatric SCD. Providers should assess caregiver coping styles and consider encouraging engagement coping.<\/jats:p>","DOI":"10.1097\/mph.0000000000002636","type":"journal-article","created":{"date-parts":[[2023,3,10]],"date-time":"2023-03-10T15:02:01Z","timestamp":1678460521000},"page":"e433-e440","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":1,"title":["The Association Between Caregiver Coping and Youth Clinic Attendance and Health-related Quality of Life in Pediatric Sickle Cell Disease"],"prefix":"10.1097","volume":"45","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1553-2301","authenticated-orcid":false,"given":"Natalie C.","family":"Koskela-Staples","sequence":"first","affiliation":[{"name":"Department of Clinical & Health Psychology, University of Florida, Gainesville, FL"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3556-7747","authenticated-orcid":false,"given":"Corinne","family":"Evans","sequence":"additional","affiliation":[{"name":"Department of Clinical & Health Psychology, University of Florida, Gainesville, FL"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4461-8235","authenticated-orcid":false,"given":"Elise M.","family":"Turner","sequence":"additional","affiliation":[{"name":"Department of Clinical & Health Psychology, University of Florida, Gainesville, FL"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L. 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