Parents experiences of the care provided by medical services whilst looking after a chronically ill child

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Abstract
Fifty‐eight parents of a child with liver disease completed the Survey of Parental Satisfaction (Dare & Hemsley, 1986). Prior to admission to hospital, many parents expressed dissatisfaction with their emotional care, the information given, and speed of referral on. As Inpatients, parental dissatisfaction was associated with distress not being noticed or responded to, lack of discussion of the child's prognosis and development, inadequate recognition of pressures imposed on marriages and the emotional/behavioural problems shown by siblings. As outpatients, 40% were dissatisfied with the emotional care given and 36% with the amount of information provided. Methods for reducing parental distress as well as the importance of auditing services in identifying unmet parental concerns are discussed.

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