Identification of needs reported by grandparents of grandchildren, from birth to twenty-one years, with disabilities in the commonwealth of Kentucky

Abstract

Grandparents of children with disabilities have an expanded grandparental role that can include performance of child care, raising the grandchildren, and in some instances taking legal custody of the grandchildren. Grandparents in the extended family of a child with a disability have needs that must be identified in order to facilitate the development of appropriate support services for them. In the last decade, minimal research has been done to identify the needs of grandparents of grandchildren with disabilities.

This study used a researcher-developed survey, the Needs Survey for Grandparents of Children with Disabilities, which contained topic areas based on the Family Needs Survey developed in 1998 by Bailey and Simeonsson. The survey collected demographic information about the grandparent participants and their grandchildren and contained forced choice rating questions pertaining to areas of need. An open-ended question was included to give grandparents an opportunity to express their unique needs. The results were analyzed using frequency data, single variable analysis, and one parameter item response theory, or Rasch analysis to determine the grandparent needs relating to each of the survey’s topic areas. The qualitative technique of theme development was used to analyze the responses given to the survey’s open-ended question.

The results of the survey revealed that of the 76 participating Kentucky grandparents of grandchildren with disabilities, the greatest proportion regarded their most important needs for further assistance to be in the topic areas of information, financial support, community services and child care. The results of the qualitative analysis of the survey’s open-ended question revealed that of the 60 response statements, the most frequently mentioned subject areas where further assistance was needed were: financial resource issues, school concerns and grandparents raising their grandchild. Correlation and regression analysis found that ethnicity, the grandparent raising their grandchild, and grandparent health were the predictors of increased needs.

The identification of grandparent needs gives professionals, in multiple disciplines serving children with disabilities and their families, valuable insight into ways to support grandparent involvement.