M Morrison1, E H Kelly2,3, H F Russell4, L C Vogel2,5. 1. Department of Research, Shriners Hospitals for Children, Philadelphia, PA, USA. 2. Department of Spinal Cord Injury Research, Shriners Hospitals for Children, Chicago, IL, USA. 3. American Academy of Pediatrics, Elk Grove Village, IL, USA. 4. Department of Psychology, Shriners Hospitals for Children, Philadelphia, PA, USA. 5. Department of Pediatrics, Rush Medical College, Chicago, IL, USA.
Abstract
STUDY DESIGN: Mixed-method study. OBJECTIVES: Describe caregiver perspectives on the rewards of parenting youth with spinal cord injury (SCI) and explore the relationships between rewards and child/caregiver demographic characteristics and child psychosocial outcomes. SETTING: Data collection occurred at three pediatric specialty hospitals within a single hospital system in the United States. METHODS: Self-identified primary caregivers (n=178) of children aged 1-18 years answered the question: 'What has been most rewarding in parenting a child with SCI'? and completed a questionnaire about their child's health-related quality of life (HRQOL). Participants aged 7-18 years (n=134) also completed tools assessing their community participation, anxiety, depression and HRQOL. RESULTS: Four reward themes emerged: Enhanced Resilience (for example, resilience in my child, self and family), Caregiver-Child Relationship, Connecting with Others, and Learning. Caregivers of children with lower self-reported school and overall psychosocial HRQOL were more likely to report Enhanced Resilience in their child. Caregivers whose children had fewer depressive symptoms, lower levels of participation and who were older at injury and interview felt rewarded by an enhanced Caregiver-Child Relationship. Caregivers of children with a broader context of participation and higher school and psychosocial HRQOL reported Connecting with Others. Finally, unemployed caregivers and those with less education were more likely to report Learning. CONCLUSIONS: Caregivers reported a variety of rewards from parenting their children with SCI, and several relationships emerged between rewards and demographics and child psychosocial outcomes. Future research should further examine the positive experiences of caregivers and whether focusing on strengths might yield better long-term outcomes for children with SCI.
STUDY DESIGN: Mixed-method study. OBJECTIVES: Describe caregiver perspectives on the rewards of parenting youth with spinal cord injury (SCI) and explore the relationships between rewards and child/caregiver demographic characteristics and child psychosocial outcomes. SETTING: Data collection occurred at three pediatric specialty hospitals within a single hospital system in the United States. METHODS: Self-identified primary caregivers (n=178) of children aged 1-18 years answered the question: 'What has been most rewarding in parenting a child with SCI'? and completed a questionnaire about their child's health-related quality of life (HRQOL). Participants aged 7-18 years (n=134) also completed tools assessing their community participation, anxiety, depression and HRQOL. RESULTS: Four reward themes emerged: Enhanced Resilience (for example, resilience in my child, self and family), Caregiver-Child Relationship, Connecting with Others, and Learning. Caregivers of children with lower self-reported school and overall psychosocial HRQOL were more likely to report Enhanced Resilience in their child. Caregivers whose children had fewer depressive symptoms, lower levels of participation and who were older at injury and interview felt rewarded by an enhanced Caregiver-Child Relationship. Caregivers of children with a broader context of participation and higher school and psychosocial HRQOL reported Connecting with Others. Finally, unemployed caregivers and those with less education were more likely to report Learning. CONCLUSIONS: Caregivers reported a variety of rewards from parenting their children with SCI, and several relationships emerged between rewards and demographics and child psychosocial outcomes. Future research should further examine the positive experiences of caregivers and whether focusing on strengths might yield better long-term outcomes for children with SCI.
Authors: Susan L Ryerson Espino; Kerry O'Rourke; Erin H Kelly; Alicia M January; Lawrence C Vogel Journal: Top Spinal Cord Inj Rehabil Date: 2022-01-19