THE MORAL EXPERIENCE OF FAMILIES WITH CHILDREN REQUIRING ASSISTED-VENTILATION AT HOME

The shift toward providing technologically complex care at home implies an assumption that “being home is good” – that this is the most desirable option. The aim of this study was to conduct an empirical analysis of the moral experience of families with children requiring assisted home ventilation. Twelve families (39 family members) were recruited through the Quebec Program for Home Ventilatory Assistance. Family moral experiences were investigated using a semi-structured interview and fieldwork observations. Six principal thematic categories were identified in the empirical data. (1) Confronting Parental Responsibility – Struggling to be a “good” parent: efforts necessary for families to balance one child's life-sustaining needs with everyday family needs. (2) Seeking Normality: striving to reconstruct family life into as normal a reality as possible. (3) Conflicting Social Values: a sense of devaluation of life with disability. (4) Living in Isolation: experience of marginalization resulting from conflicting social values. (5) What about the Voice of the Child? (the disclosures and silences of patients and their siblings); (6) Questioning the Moral Order: seeking to find sense in life. An overarching phenomenon that best characterizes these families' experiences was identified: daily living with distress and enrichment, highlighting that these children were not simply family burdens but also important sources of pleasure. These findings call for an increased sensitization to the needs of this population among staff in critical care, acute, and community settings.