Paediatric long-term home ventilation: Should we rethink social inclusion for these children?

Paediatric long-term home ventilation: Should we rethink social inclusion for these children?

Benedetti F; Agosto C; Divisic A; Rusalen F; Moro N; Pellizzon M; Ometto M; Grigolon E; Lazzarin P; Benini F

European Respiratory Journal

2019

adolescent; artificial ventilation; assisted ventilation; attention; child; conference abstract; female; human; major clinical study; male; medical record review; neuromuscular disease; noninvasive ventilation; palliative therapy; retrospective study; school child; school dropout; secondary health care; social exclusion; social needs; tracheostomy

Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS. Objectives: aim of the study was to analyze the social needs of children and families living with home LTVS and highlights signs of social exclusion. Methods: retrospective medical records review of children on home LTVS, followed by our Regional Paediatric Palliative Care Network. According to Wallis and Jardine we defined paediatric LTVS as “any child below the age of 17 who is medically stable and requires a mechanical aid for breathing either invasively by tracheostomy or by non-invasive mask interface for all, or part of the day.” We extended the age to 23 yrs. The following data were adopted as signs of social exclusion: absence of secondary care-giver (meaning the child must be with the same person throughout the day), abandon of work by a parent, no chance for family holiday, school dropout. Results: among 87 patients, 33 cases are ventilated invasively and 54 with Non-invasive Ventilation. Median age is 9,5 yrs; 52% of the children are affected by a neuromuscular disease, 21% being permanently enticed. Thirty-seven (42,5%) children don’t have a secondary care-giver, in 41 families one parent abandoned work and 12 children experienced school dropout. Conclusions: Children and families living with home LTVS have special needs not only in the medical field but also in the social one. Our data confirm that these children are at high risk for exclusion from the society and suggest more attention on these aspects which represent significant challenge for clinicians.

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