A Child with Home Mechanical Ventilation Affects the Family: A Danish Study Shows That Well Siblings May Become Shadow Children

Background: Having a child with chronic respiratory illness and home mechanical ventilation (HMV) may not only affect the ill child, but also the family, including well siblings' everyday life and physical and mental well-being. Purpose: To explore the perspectives of parents to a child with HMV on well siblings' lives. Design and Methods: A qualitative phenomenological-hermeneutic approach using semistructured interviews with eight families, that included a child on HMV and well siblings. Data were collected from March to June 2019 at a Danish University Hospital. Results: Three main themes emerged: Tying emotional bonds with both children, Protection of everyday life for well siblings and A different family life - sharing attentiveness. The findings showed that being a parent to an HMV child and well siblings is complex to manage, and may make parents feel inadequate towards their children. Conclusions: Parents feel inadequate in being parents to both the HMV child and well siblings, often transferring adult responsibilities to the well sibling, and sometimes leaving the well siblings in the shadow. Implications: Clinical practice needs to expand interventions to support parents and well siblings by using a more family-centred care approach, not only during admission, but also in a long-term perspective.