The aim of this study was to explore how parents experience their situation living with children with chronic respiratory dysfunctions who need daily treatment at home.
Informants were recruited via social media or the child’s health care staff. Parents to 9 children aged 5–16 years from different regional parts of Sweden were included — nine mothers and one father. Semi-structured interviews were conducted via a digital platform and were transcribed verbatim. The interviews were analysed by reflexive Thematic Analysis.
The parents’ described conflicting roles; they were parents but at the same time they were caregivers with extensive knowledge about the child’s need and care. They also described a function as coordinators, having to navigate and communicate between different health care systems and caregivers. Further, they expressed how they strived to fulfil the different needs in the family. All the time they were living with constant worry and watchfulness.
This study illuminates the experiences of parents living with children with chronic respiratory dysfunctions. The parents’ situation is intimately linked to the health and well-being of their children. They manage their life situations in different ways, and experience varying degrees of support from the health care and other instances, which could be enhanced — especially regarding coordination and accessibility — to obtain a sustainable situation with reduced stress. Future studies that explore how common these experiences are among the families are called for in order to prioritise changes and to understand more about which families need more support or new interventions.
The increased knowledge about the parents' situation and needs can help tailor optimal support for the families and is thus valuable for health care staff, social insurance systems, and policymakers.
respiratory dysfunction
parents
