W W Geense1, B G I van Gaal1, J L Knoll2, E A M Cornelissen2, T van Achterberg3. 1. Radboud University Medical Center, Radboud Institute for Health Sciences, IQ Healthcare, Nijmegen, The Netherlands. 2. Department of Pediatric Nephrology, Radboud University Medical Center, Nijmegen, The Netherlands. 3. Centre for Health Services and Nursing Research, KU Leuven, Leuven, Belgium.
Abstract
BACKGROUND: Parents of children with a chronic kidney disease (CKD) have a crucial role in the management of their child's disease. The burden on parents is high: they are often exhausted, depressed and experience high levels of stress and a low quality of life, which could have a negative impact on their child's health outcomes. Support aiming at preventing and reducing parental stress is essential. Therefore, it is necessary to have insight in the problems and support needs among these parents. OBJECTIVE: Our aim is to describe parents' support needs regarding the problems they experience in having a child with CKD. METHODS: Five focus group interviews were conducted with parents of children: (i) with hereditary kidney disease, (ii) with nephrotic syndrome, (iii) with chronic kidney failure, (iv) using dialysis and (v) after renal transplantation. The children were treated at a paediatric nephrology unit in one university hospital in the Netherlands. The data were thematically analysed. RESULTS: Twenty-one parents participated in the focus groups. Parents need more information about their child's CKD and treatment options, and managing their own hobbies and work. Furthermore, parents need emotional support from their partner, family, friends, peers and healthcare professionals to help them cope with the disease of their child. Additionally, parents need practical support to hand over their care and support in transport, financial management and regarding their child at school. CONCLUSION: Needs regarding balancing their personal life are seldom prioritized by parents as the child's needs are considered more important. Therefore, it is important that healthcare professionals should not only attend to the abilities of parents concerning their child's disease management, but also focus on the parents' abilities in balancing their responsibilities as a caregiver with their own personal life.
BACKGROUND: Parents of children with a chronic kidney disease (CKD) have a crucial role in the management of their child's disease. The burden on parents is high: they are often exhausted, depressed and experience high levels of stress and a low quality of life, which could have a negative impact on their child's health outcomes. Support aiming at preventing and reducing parental stress is essential. Therefore, it is necessary to have insight in the problems and support needs among these parents. OBJECTIVE: Our aim is to describe parents' support needs regarding the problems they experience in having a child with CKD. METHODS: Five focus group interviews were conducted with parents of children: (i) with hereditary kidney disease, (ii) with nephrotic syndrome, (iii) with chronic kidney failure, (iv) using dialysis and (v) after renal transplantation. The children were treated at a paediatric nephrology unit in one university hospital in the Netherlands. The data were thematically analysed. RESULTS: Twenty-one parents participated in the focus groups. Parents need more information about their child's CKD and treatment options, and managing their own hobbies and work. Furthermore, parents need emotional support from their partner, family, friends, peers and healthcare professionals to help them cope with the disease of their child. Additionally, parents need practical support to hand over their care and support in transport, financial management and regarding their child at school. CONCLUSION: Needs regarding balancing their personal life are seldom prioritized by parents as the child's needs are considered more important. Therefore, it is important that healthcare professionals should not only attend to the abilities of parents concerning their child's disease management, but also focus on the parents' abilities in balancing their responsibilities as a caregiver with their own personal life.
Authors: Chandana Guha; Rabia Khalid; Anita van Zwieten; Anna Francis; Carmel M Hawley; Allison Jauré; Armando Teixeira-Pinto; Alistair R Mallard; Amelie Bernier-Jean; David W Johnson; Deirdre Hahn; Donna Reidlinger; Elaine M Pascoe; Elizabeth G Ryan; Fiona Mackie; Hugh J McCarthy; Jonathan C Craig; Julie Varghese; Charani Kiriwandeniya; Kirsten Howard; Nicholas G Larkins; Luke Macauley; Amanda Walker; Martin Howell; Michelle Irving; Patrina H Y Caldwell; Reginald Woodleigh; Shilpanjali Jesudason; Simon A Carter; Sean E Kennedy; Stephen I Alexander; Steven McTaggart; Germaine Wong Journal: Pediatr Nephrol Date: 2022-10-20 Impact factor: 3.651
Authors: Wytske W Geense; Betsie Gi van Gaal; Jaqueline L Knoll; Nienke M Maas; Gerjo Kok; Elisabeth Am Cornelissen; Maria Wg Nijhuis-van der Sanden Journal: J Med Internet Res Date: 2018-08-01 Impact factor: 5.428
Authors: Natalie T Deuitch; Erika Beckman; Meghan C Halley; Jennifer L Young; Chloe M Reuter; Jennefer Kohler; Jonathan A Bernstein; Matthew T Wheeler; Kelly E Ormond; Holly K Tabor Journal: J Genet Couns Date: 2021-06-06 Impact factor: 2.537