Living with a child with a chronic respiratory condition: parents’ experiences

Background Parents of children with medical complexities have reported significant burdens, and increased knowledge about the families’ situation and about how parents experience their everyday life is needed to provide family-centred support when needed. The aim of this study was to illuminate parents’ experiences of living with a child with chronic respiratory dysfunctions who needs daily treatment at home.Methods A qualitative study with an inductive approach was conducted. Ten parents were interviewed, and the content was analysed using reflexive thematic analysis. The study was approved by the Swedish Ethical Review Authority (Ref. no. 2022-07283-01).Results Four themes describe the parents’ experiences: i) being an unofficial caregiver around the clock, ii) having the responsibility as a coordinator, iii) striving to fulfil different needs in the family, and iv) living with constant worry and watchfulness.Conclusion The parents’ responsibilities and heavy burdens included living with the need to be constantly alert and taking on different roles to manage their situation. Organisational and structural barriers in society and in healthcare services were identified, as were impacts on the individual parent and their family life. More research is needed to explore other possible experiences and views, the aim being to improve conditions for these families if needed.