Jo Wray1, Linda Maynard. 1. Department of Paediatrics, Royal Brompton and Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex UB9 6JH, UK. j.wray@rbh.nthames.nhs.uk
Abstract
AIMS: Firstly to assess maternal perceptions of the impact of congenital or acquired cardiac disease on the child, parents, and siblings, and secondly to determine whether there were differences between different diagnostic groups, or between those with and without other health problems, with a view to informing the development of a cardiac liaison nursing service for children. METHODS: A postal survey of 447 families of children with congenital or acquired cardiac disease. RESULTS: Completed questionnaires were received from 209 (46.8 percent) families. The cardiac lesion was perceived to have a negative impact on many areas of family life for about one fifth of the sample, particularly in those families where the child was perceived to be more ill. Family relationships, however, were affected in a very different way, with 43 percent reporting that family members had become closer, and only 8 percent that they had been "pulled apart" by the condition of their child. There were a number of differences in the perceived impact of the cardiac malformation on school and family life between children with different diagnoses, with this being particularly evident for families of the patients who had undergone transplantation. When the sample was divided according to the presence or absence of other problems with health, however, many of these differences between the diagnostic groups disappeared. CONCLUSIONS: Irrespective of the severity of the disease, the presence of a cardiac malformation has an impact on everyday life for a significant number of children and families, particularly if associated with other problems with health. Implications for targeting resources to reduce morbidity in these children and families are discussed.
AIMS: Firstly to assess maternal perceptions of the impact of congenital or acquired cardiac disease on the child, parents, and siblings, and secondly to determine whether there were differences between different diagnostic groups, or between those with and without other health problems, with a view to informing the development of a cardiac liaison nursing service for children. METHODS: A postal survey of 447 families of children with congenital or acquired cardiac disease. RESULTS: Completed questionnaires were received from 209 (46.8 percent) families. The cardiac lesion was perceived to have a negative impact on many areas of family life for about one fifth of the sample, particularly in those families where the child was perceived to be more ill. Family relationships, however, were affected in a very different way, with 43 percent reporting that family members had become closer, and only 8 percent that they had been "pulled apart" by the condition of their child. There were a number of differences in the perceived impact of the cardiac malformation on school and family life between children with different diagnoses, with this being particularly evident for families of the patients who had undergone transplantation. When the sample was divided according to the presence or absence of other problems with health, however, many of these differences between the diagnostic groups disappeared. CONCLUSIONS: Irrespective of the severity of the disease, the presence of a cardiac malformation has an impact on everyday life for a significant number of children and families, particularly if associated with other problems with health. Implications for targeting resources to reduce morbidity in these children and families are discussed.
Authors: J S Lee; N Cinanni; N Di Cristofaro; S Lee; R Dillenburg; K B Adamo; T Mondal; N Barrowman; G Shanmugam; B W Timmons; P W Longmuir Journal: Pediatr Cardiol Date: 2019-11-07 Impact factor: 1.655
Authors: Richard J Auchus; Selma Feldman Witchel; Kelly R Leight; Javier Aisenberg; Ricardo Azziz; Tânia A Bachega; Linda A Baker; Arlene B Baratz; Laurence S Baskin; Sheri A Berenbaum; David T Breault; Barbara I Cerame; Gerard S Conway; Erica A Eugster; Stephanie Fracassa; John P Gearhart; Mitchell E Geffner; Katharine B Harris; Richard S Hurwitz; Aviva L Katz; Brinda N Kalro; Peter A Lee; Gretchen Alger Lin; Karen J Loechner; Ian Marshall; Deborah P Merke; Claude J Migeon; Walter L Miller; Tamara L Nenadovich; Sharon E Oberfield; Kenneth A Pass; Dix P Poppas; Michele A Lloyd-Puryear; Charmian A Quigley; Felix G Riepe; Richard C Rink; Scott A Rivkees; David E Sandberg; Traci L Schaeffer; Richard N Schlussel; Francis X Schneck; Ellen W Seely; Diane Snyder; Phyllis W Speiser; Bradford L Therrell; Carol Vanryzin; Maria G Vogiatzi; Michael P Wajnrajch; Perrin C White; Alan E Zuckerman Journal: Int J Pediatr Endocrinol Date: 2011-01-10
Authors: Andreza Daniela Pontes Lucas; Paola Salari; Monaliza de Oliveira Ferreira; Tarcisio Daniel Pontes Lucas Journal: BMC Public Health Date: 2022-01-30 Impact factor: 4.135