What we know (and do not know) about raising children with complex continuing care needs

Abstract

In western industrialized countries, long-term life-support technologies such as ventilators and nutrition systems allow many children to survive diseases and injuries previously considered fatal.Most are cared for in their homes, where they are cherished members of their families.These children have complex continuing care needs that stem from multi-organ system involvement and cognitive and/or developmental problems.Incidence and prevalence rates are unknown because different terms are used to classify this small but growing pediatric population.Each of us has conducted research with these families in Canada, the US and UK respectively.Although these countries have different models of health and social service provision, our findings are similar.Our combined findings corroborate those of other researchers, indicating that radically new forms of childhood, parenthood and family life have been created, but are poorly understood.We know that these children commonly receive sub-optimal long-term care because they 'fall between the cracks' due to ambiguous categories, exclusionary criteria or service gaps.Nevertheless, most parents emphasize the important benefits that they derive from raising them and the enhancements they make to family life.However, daily life is extremely constrained also by extraordinary physical, psychological, social and financial challenges.

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