Brigitte Seliner1, Bea Latal2, Rebecca Spirig3. 1. APN Rehabilitation, University Children's Hospital, Zurich, Switzerland. 2. Professor Physician, and Head of Developmental Pediatrics, University Children's Hospital, Zurich, Switzerland. 3. Professor and Executive Director of Nursing and Allied Health Care Professions, University Hospital, Zurich, Switzerland.
Abstract
PURPOSE: We aimed to assess parental burden of care, satisfaction with family-centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors. DESIGN: A cross-sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital. RESULTS: The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health-related quality of life. Significant correlations with the hospitalized children's well-being were rs = .408 for burden of care and rs -.368 for quality of life. Qualitative results showed parents struggling to safeguard their children and worrying most about the children's well-being. PRACTICE IMPLICATIONS: Health professionals need to be aware of parental burden and that the perception of the children's well-being and the parents' efforts determine their support needs. Easing parents' burden and fostering confidence in the hospitalized children's well-being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration.
PURPOSE: We aimed to assess parental burden of care, satisfaction with family-centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors. DESIGN: A cross-sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital. RESULTS: The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health-related quality of life. Significant correlations with the hospitalized children's well-being were rs = .408 for burden of care and rs -.368 for quality of life. Qualitative results showed parents struggling to safeguard their children and worrying most about the children's well-being. PRACTICE IMPLICATIONS: Health professionals need to be aware of parental burden and that the perception of the children's well-being and the parents' efforts determine their support needs. Easing parents' burden and fostering confidence in the hospitalized children's well-being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration.
Keywords:
Burden of care; cross-sectional study; pediatric nursing; profound intellectual and multiple disabilities (PIMD); quality of life; satisfaction with family-centered care
Authors: Agnieszka Kruszecka-Krówka; Ewa Smoleń; Grażyna Cepuch; Krystyna Piskorz-Ogórek; Mieczysława Perek; Agnieszka Gniadek Journal: Int J Environ Res Public Health Date: 2019-05-20 Impact factor: 3.390