Project Description:
People with developmental disabilities in Arizona comprise a population that is growing, aging, and becoming increasingly diverse. Research has suggested that given the current trends, adults with developmental disabilities (DD) can expect to have life spans comparable to their age peers in the general population (Anderson et al, 1998; Horowitz et al, 2000). Braddock (1999) estimates that two-thirds of the individuals (3.17 million) with DD living in the US receive care in the home from family caregivers. It is also estimated that 25% are over 60 years of age (Braddock & Fujiura, 1998). These changing demographic and geographic profiles require that aging caregivers make plans for the future care of their family member with a developmental disability.
Goal 3.1 of Sonoran UCEDD project is designed to describe and address barriers to effective late life transitions for aging caregivers of adults with developmental disabilities. Five focus groups and twenty-five individual interviews will be conducted with aging primary caregivers/advocates who are age 55 and older. The purpose of the interviews and focus groups is to evaluate and develop guidance on effective transitions for aging caregivers by exploring the issues and potential barriers related to making future care plans for the person with a developmental disability. The interviews will take place across Arizona, including rural and urban communities. The focus groups will take place in Phoenix, Tucson, Flagstaff and Yuma.
Prior to the interview and focus group sessions, participants will be asked to complete a brief questionnaire that provides background information on themselves and the person with DD for whom they provide care. Recruitment will occur with the assistance of agencies with well-developed relationships within the disability community. These include the Department of Economic Security; Division of Developmental Disabilities (DDD); Arizona Governor?s Council on Developmental Disabilities (GCDD); Pima Council on Aging, advocacy groups like the Arc chapters in Arizona; and state wide disability related advocacy groups such as United Cerebral Palsy, Southwest Autism Research Center, Epilepsy Society and Easter Seals.
The significance of the study is that the data will 1) serve as a base for developing culturally sensitive educational materials for caregivers on how to plan for their family member?s future care; 2) lead to increased understanding of the unmet needs of aging caregivers and people with DD; and 3) promote effective transitional planning policy in Arizona (as a part of Sonoran UCEDD project).
Keyword(s):
aging caregivers elderly life transitions
Core Function(s):
Performing Research or Evaluation
Area of Emphasis
Quality Assurance, Quality of Life
Target Audience:
Family Members/Caregivers, Adults with Disabilities
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Geographic Areas, Rural/Remote
Primary Target Audience Geographic Descriptor:
State
COVID-19 Related Data:
N/A
