CDHS (Buffalo State College Research Foundation) and
Counseling, Educational and School Psychology,
StateUniversity of NY at Buffalo
Work Plan Agreement
July 1, 2002 to June 30, 2003
Sally Speed, Unit Director
Medicaid Training Institute
Jim Donnelly, Assistant Professor, StateUniversityof New York at Buffalo, Counseling, Educational and School Psychology
Jennifer A. Burhart, Assigned Ph.D. student, State University of New York at Buffalo, Counseling, Educational and School Psychology
Project: Family Quality of Life
Overview:
Studies of quality of life have traditionally focused on either the individual person or the community level. Relatively less attention has been paid to what is perhaps the critical link between the individual and the community, the family. A variety of issues related to family life have drawn the attention of researchers and policy makers (e.g., welfare to work; dual career families; genetically transmitted health risks, etc.), but the literature is quite disparate. The absence of a well-developed model or measure of family quality of life represents a critical knowledge shortcoming when considering health problems that impact an entire family system. One such situation arises when families faces life threatening illness in childhood. At present, new models of palliative care for children are being developed, but the absence of a valid and reliable model of family quality of life represents a significant limit in understanding the long term impact of such illnesses as well the testing of clinical interventions to help such families.
Purpose: The purpose of the proposed project is threefold: 1) Produce an electronic version of the annotated bibliography of Family Quality of Life in EndNote (Version 6) 2) Participate in the family interview aspect of a needs assessment on palliative and hospice care needs of children 3) Assist in the development of the child and family section of the web site of the Hospice and Palliative Care Association of New York State.
Application:Medicaid New Workers Institute
Rationale: This research will be used to assist Medicaid Trainers by providing background for training and supporting their statements in training on the critical nature of medical care in the quality of life of families receiving public health insurance benefits.
Objectives:
1)Develop a searchable electronic version of the annotated bibliography of family quality of life.
2)Conduct protocol based interviews with families currently receiving hospice or palliative care.
3)Work with a subcommittee of the New York State Pediatric Hospice and Palliative Care Advisory Committee and the Hospice and Palliative Care Association of New York State to develop electronic resources for children and families seeking information of palliative and hospice care for children.
Final Product Deliverables: Annotated Bibliography
Family Quality of Life Powerpoint Presentation
The annotated bibliography will be useful to researchers, practitioners, theoreticians and policy analysts and will be a valuable resource for the Office of Medicaid Management trainers. The needs assessment will inform practitioners, researchers and policy makers about the perceived needs of children and families in palliative care. The data will also be useful in validation of a conceptual model of child and family needs and curriculum development.
The Family Quality of Life Powerpoint presentation can be used for training purposes for Medicaid training trainers.