An Integrated Literature Review of the Knowledge Needs of Parents With Children With Special Health Care Needs and of Instruments to Assess These Needs

The purpose of this integrative (including both quantitative and qualitative studies) literature review was to identify knowledge needs of parents of a child with special health care needs and to evaluate instruments to assess these needs. The content analysis of 48 publications revealed a vast amount of knowledge needs that were categorized into 9 categories: (a) knowledge about the condition or illness, (b) support, (c) treatment, (d) everyday care of the child, (f) the future, (g) how to explain the illness to others, (h) equipment, (i) organizational issues, and (j) the effect of the illness on the family. Several instruments to assess these needs are described. There is evidence that parents have various knowledge needs at different times of their children's life and it is important that these needs are assessed systematically. Professionals have many possibilities to provide information and education as it is needed by these parents.