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Interviewing children with home mechanical ventilation – privileges and challenges Israelsson-Skogsberg, Å, University of Borås, Sweden; Lindahl, B, University of Borås, Sweden Research that focuses on children living with home mechanical ventilation (HMV) and their own voices and perspective is sparse.
Developments in medical technology, care and treatment have increased the survival of children with serious illnesses or injuries. This means that a raising numbers of technology-assisted children can live their lives in their own homes. Children with HMV are a part of this unique population. The underlying medical diagnosis varies and may cause severe functional limitations, for example
difficulties to breathe, walk, eat, swallow and in some cases talk. Ventilator support may be required either during sleep or over 24 hours invasively (with tracheostomy) or non-invasively (with a
facemask).
The aim is to present experiences from interviewing children living with faltering voices and communication problems related to ventilator treatment.
Nine interviews with children (age range 7-20 years) with HMV were conducted. Photovoice was used to supplement the data collection process. Challenges with interviewing will be presented such as individually tailoring the interview sessions to each person´s wishes, having a parent or a personal care assistant present at the interviews, and the privileges in being welcome to share a moment in the child´s daily life. Data were analyzed using an inductive and interpretive approach to qualitative content analysis.The comprehensive, careful and slow data analysis revealed that the parent's voice was sometimes a part of the voice of the child and had to be handled as one voice. The child's voice itself was not strong enough to conduct a long conversation.
