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Living Through Liminality? Situating the Transitional Experience of Parents of Children With Mucopolysaccharidoses

key information

source: Scandinavian Journal of Caring Sciences

year: 2021

authors: Somanadhan S,Brinkley A,Larkin PJ

summary/abstract:

Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in subsequent years. The severity of the condition varies according to the specific type, ranging from very mild symptoms to, in most cases, complex healthcare needs, including mental and physical disabilities.

organization: UCD School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland.

DOI: 10.1111/scs.13026

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