Grandparents Raising Grandchildren with Disabilities: Assessing Health Status, Home Environment and Impact of a Family Support Case Management Model

IntroductionFamilies where grandparents are the primary caregiver for their grandchildren are becoming more prevalent in the US as compared to 30 years ago (1,2). In 2012, 4.2 million US households were comprised of grandparents living with grandchildren (3) and 2.7 million grandparents were primary caregivers for their grandchildren under the age of 18 years old (4). Caring for a child while in a later stage of life requires many adjustments on the part of the grandparent. For example, a grandparent who must tailor a home environment to meet the needs of a grandchild, especially one with a disability, can be challenging financially and emotionally, and thus, be a source of stress (see Figure 1). This, and other stressors can result in feelings of isolation and depression among these senior citizens (1, 5). Also, grandparents are more likely to need to manage their own health conditions alongside their grandchildren's health; often times, these health conditions (hypertension, heart disease, diabetes, and arthritis) which are more likely to occur in older populations are chronic in nature, and thereby, require more frequent visits to healthcare providers, medications, and limit their mobility. Consequently, managing these chronic conditions along with the needs of their grandchildren, particularly if the children have disabilities, can negatively impact the health and wellbeing of all members of the household (6,7). In these situations, elderly primary caregivers have been found to neglect their own health in order to properly care for their grandchildren (7). Grandparents, many of whom are on a limited and fixed income, must address the added financial burden associated with the care of their grandchildren with disabilities or chronic medical conditions. Costs tied to medical treatment or transportation to medical facilities (8) diverts funds from maintaining the home environment (9).Innovative Solutions for Disadvantage and Disability (ISDD) is a not-for-profit organization, based in Atlanta, Georgia that supports children, with or at risk for disabilities, from low income, primarily minority and underserved communities (10). They work with community leaders and support community-based participatory research that helps reduce health disparities among vulnerable children. Project GRANDD, a program of ISDD, uses a familycentered support model to specifically address the needs of grandparents who are the primary caregivers for their grandchildren with disabilities. Educational support, forum to share common experiences with other grandparents in similar predicaments, home visits by trained social workers, and appropriate referrals to legal and other necessary social service agencies are examples of the type of family-centered case management provided through Project GRANDD.The impact of financial, physical, and mental stressors on the health of grandparents is an issue that deserves serious consideration. The purpose of Project GRANDD is to "break the cycle" of intergenerational disadvantage by reducing stress and improving health outcomes through family-centered case management (Figure 1). In this study, we examined the direct and indirect impact of family-centered case management offered through Project GRANDD on enrolled grandparents' quality of life, using indicators of their perceived health benefit and the safety of their place of residence.MethodsThis study is a cross-sectional survey of grandparents who were actively enrolled in a case management program offered through Project GRANDD.Study participantsGrandparents who were members of Project GRANDD and had at least one grandchild with a disability under their direct care were eligible to participate. Participants were required to be residents of the state of Georgia, speak and understand English, and live in a rented or owned property. Active members of Project GRANDD were defined as those grandparents who had consistent contact with program staff through calls, emails, and group meetings since joining the program. …