Amanda J Ullman1,2,3, Tricia M Kleidon4,5,6, Victoria Gibson4,5, Mari Takashima6, Jessica Schults4,5,7, Paula Cattanach5,6, Rebecca Paterson4, Marie Cooke6, Joshua Byrnes8, Masnoon Saiyed8, Vineet Chopra6,9, Claire Rickard4,6,7. 1. School of Nursing, Midwifery and Social Work, University of Queensland, Brisbane, QLD, Australia. a.ullman@uq.edu.au. 2. Children's Health Queensland Hospital and Health Service, Brisbane, QLD, Australia. a.ullman@uq.edu.au. 3. Menzies Health Institute Queensland and School of Nursing and Midwifery, Griffith University, Brisbane, QLD, Australia. a.ullman@uq.edu.au. 4. School of Nursing, Midwifery and Social Work, University of Queensland, Brisbane, QLD, Australia. 5. Children's Health Queensland Hospital and Health Service, Brisbane, QLD, Australia. 6. Menzies Health Institute Queensland and School of Nursing and Midwifery, Griffith University, Brisbane, QLD, Australia. 7. Herston Infectious Disease Institute, Metro North Hospitals and Health Service, Brisbane, QLD, Australia. 8. Centre for Applied Health Economics, Menzies Health Institute Queensland, Griffith University, Brisbane, QLD, Australia. 9. Department of Medicine, University of Colorado at Denver, Anschutz Medical Campus, Denver, CO, USA.
Abstract
BACKGROUND: Our study aims to explore the experience of having a central venous access device (CVAD) from the perspective of the child and family and how movements within and outside of hospital environments influence this experience. METHODS: A mixed-methods study was conducted across Children's Health Queensland (Australia), including inpatient and home-care settings. Children less than 18 years with CVADs were eligible and followed for 3 months or CVAD removal. A subgroup of primary caregivers participated in semi-structured interviews. Quantitative and qualitative measures of child and family CVAD experiences were explored. RESULTS: In total, 163 patients with 200 CVADs were recruited and followed for 6993 catheter days (3329 [48%] inpatients; 3147 [45%] outpatients; 517 [7%] home). Seventeen participants were interviewed. Experiences of having a CVAD were complex but predominantly positive primarily related to personalized CVAD care, healthcare quality, and general wellbeing. Their experience was shaped by their movements through hospital and home environments, including care variation and distress with procedures. Device selection and insertion location further influenced experience, including safety, impairments in activities of daily living, school, and recreation. CONCLUSIONS: CVAD experiences were influenced by nonmodifiable (e.g., diagnosis) and modifiable factors (e.g., education; care variation). Clinical approaches and policies that account for family and child considerations should be explored. IMPACT: Variation in decision making and management for pediatric CVADs is accepted by many clinicians, but the influence this variation has on the health experience of children and their families is less well explored. This is the first study to draw from a broad range of children requiring CVADs to determine their experience within and outside of healthcare facilities. Interdisciplinary clinicians and researchers need to work collaboratively with children and their families to provide resources and support services to ensure they have positive experiences with CVADs, no matter where they are managed, or who they are managed by.
BACKGROUND: Our study aims to explore the experience of having a central venous access device (CVAD) from the perspective of the child and family and how movements within and outside of hospital environments influence this experience. METHODS: A mixed-methods study was conducted across Children's Health Queensland (Australia), including inpatient and home-care settings. Children less than 18 years with CVADs were eligible and followed for 3 months or CVAD removal. A subgroup of primary caregivers participated in semi-structured interviews. Quantitative and qualitative measures of child and family CVAD experiences were explored. RESULTS: In total, 163 patients with 200 CVADs were recruited and followed for 6993 catheter days (3329 [48%] inpatients; 3147 [45%] outpatients; 517 [7%] home). Seventeen participants were interviewed. Experiences of having a CVAD were complex but predominantly positive primarily related to personalized CVAD care, healthcare quality, and general wellbeing. Their experience was shaped by their movements through hospital and home environments, including care variation and distress with procedures. Device selection and insertion location further influenced experience, including safety, impairments in activities of daily living, school, and recreation. CONCLUSIONS: CVAD experiences were influenced by nonmodifiable (e.g., diagnosis) and modifiable factors (e.g., education; care variation). Clinical approaches and policies that account for family and child considerations should be explored. IMPACT: Variation in decision making and management for pediatric CVADs is accepted by many clinicians, but the influence this variation has on the health experience of children and their families is less well explored. This is the first study to draw from a broad range of children requiring CVADs to determine their experience within and outside of healthcare facilities. Interdisciplinary clinicians and researchers need to work collaboratively with children and their families to provide resources and support services to ensure they have positive experiences with CVADs, no matter where they are managed, or who they are managed by.