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Introduction

There are more grandparent-headed households (GPHH) today than at any other time in American history [1]. The number of children living with a grandparent has increased 77 % since 1970, 22 % since 2000 and spiked after the onset of the recent recession [2]. Grandmothers shoulder the lion’s share of grandparent caregiving, comprising 64 % of the 2.7 million grandparents primarily responsible for caring for their grandchildren [1]. Even in households maintained by both grandparents, grandmothers do most of the carework [3]. These trends extend beyond the U.S. and are evident in the number of grandparents caring for their grandchildren globally. Not only are grandmothers caring for grandchildren more than ever before, but also they are more likely than parents to be caring for children with intellectual and developmental disabilities (IDD) [4]. As such, it is critical to understand their caregiving experiences, the obstacles they face in providing care, and to identify sources of support proven to alleviate caregiving burden.

Grandparent Caregiving Among African Americans

The dramatic rise in GPHH has been especially pronounced among African Americans. In fact, “the majority of children in all forms of kinship care are from communities of color. Forty-three percent of these children are African American, and 17 % are Hispanic. Thirty-seven percent of the children in kinship care are White and 2 % are of another race/ethnicity [5].” Although African Americans comprise only 13 % of the U.S. population, in 2010 they accounted for 24 % of GPHH [6]. They are nearly twice as likely to live in skipped-generation households (SGH), defined as GPHH where parents are absent than their white counterparts (13 versus 7 %) [1]. Among African American grandparents, those who are the most economically disadvantaged and who have the fewest resources to draw upon are the most likely to be thrust into the primary caregiving role, including those living below the Federal Poverty Line (FPL), without a high school degree, with more functional limitations, and women receiving public assistance [7]. Despite their fragile economic status, current child welfare and kinship care policies and practices make grandmothers the primary safety net for children in need of out-of-home care.

Several factors have contributed to the overrepresentation of African American grandmothers among caregiving grandparents. Demographic changes in family structure (increase in out-of-wedlock and teenage births), policies that shift responsibility away from the state to families (1996 Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) and kinship care legislation), the effects of social problems (e.g., substance use, incarceration, HIV/AIDS, unemployment, parental neglect) and sociocultural norms that govern family responsibility have caused a reconfiguration of African American family forms and roles [7]. Moreover, policies that expedite the termination of parental rights and that rely heavily on kinship care as a social service force grandparent caregivers to assume primary responsibility of their grandchildren to keep them out of the foster care system. These changing social, cultural, and economic structures in the African American community are influencing who will care for children, whether they do so under the auspices of the child welfare system, and whether they have the resources to do so.

Vulnerability Among Grandparent Caregivers

In addition to the economic demands associated with providing care (1/5 of GPHH are poor and 2/3 live below three times the federal poverty level (FPL)), stressors reported by grandparent caregivers include managing the presence or absence of parents, caregiving demands, legal issues, difficulties controlling grandchildren’s behavior, dealing with grandchildren with special needs, trouble obtaining child and respite care, coping with generational differences in values, and assuming a firm parental role [8, 9]. Research exploring custodial grandparents’ perceptions of parenting show that caregivers perceive the following stressors directly related to caring for their grandchildren: attachment and reunification issues; adjusting to their new role with little time to prepare; the child’s emotional, physical and behavioral problems; the age or number of children; having knowledge about the child’s birth family; and protecting children from their birth parents [10]. A strong relationship between mental health outcomes and parenting behavior has also been found. Rodgers-Farmer [11] found that parenting stress was related to depression among 82 custodial grandmothers. Moreover, research aimed at identifying issues facing grandfamilies charts the physical, emotional, developmental, and behavioral challenges children being cared for by grandparents are likely to experience (See [4] for a review).

Given the magnitude of the stressors they face and the scarcity of their resources it is not surprising that custodial grandparents have been found to have poorer mental and physical health compared to their non-caregiving counterparts [12], filial and spousal caregivers [13], among grandparent caregivers who provide lesser degrees of care [14, 15], or members of the general population [16, 17]. Holt and colleagues [18] note that poor health manifest in several ways for grandparent caregivers primarily responsible for raising their grandchildren:

  • Grandparents who are primary caregivers report poorer health outcomes and functional limitations, more chronic condition exacerbations, comorbidity worsening, self-assessed health decline, and limitations to their activities of daily living than non-caregiving grandparents [19]. Custodial grandparents actually report worse self-assessed health than non-caregiving grandparents with the most frequently reported health issues being elevated blood pressure and arthritis [20]. Twenty-five percent of grandparent caregivers were found to have clinically significant depression [12], and 65 % of grandparents raising grandchildren with disabilities reported a health problem such as coronary heart disease, orthopedic problems, uncontrolled diabetes, and ulcers [21]. Grandparents raising children with physical or behavioral problems have been found to be among the least likely to seek and receive counseling and other help for themselves [3, 22].

Informal and Formal Resources

The majority of grandparents care for children privately, without child welfare system involvement. The southern region of the United States has the greatest percentage of GPHH in the country at 47.2 % [27]. In Georgia there are over 102,000 grandparents responsible for raising their grandchildren – 41 % have no parent present, 69 % are under the age of 60 and 25 % live in poverty [27]. Many grandparent caregivers have financial difficulty because of a significant decline in traditional family and community resources and an inability to qualify for age-based formal resources. Moreover, not only are most grandparents who provide care in no financial position do so, they underutilize formal income assistance [6, 7, 9, 23, 24].

In response to severely weakened supportive resources within their family and community structures, custodial grandparents often turn to social service agencies for assistance [8, 26]. However, instead of social services that act as a “cornerstone of services for those who are in need and cannot afford to seek services elsewhere and as a last defense in terms of stability and family restoration” grandmothers in previous studies report inappropriate service recommendations, a lack of support, and unavailability ([26], p. 837). As such, the support GPHH receive from community-based organizations (CBO) is critical to their well-being. Previous research shows that by offering additional and alternative options for meeting custodial grandparents service and treatment needs CBOs fill gaps that remain from inaccessible social service agencies and traditional helping resources, including providing legal and financial assistance, support during family crisis, information about available resources and services, help navigating childrearing institutions (e.g., schools, child care, medical providers), and respite and child-related activities and supports [25, 26].

Project GRANDD

Data for this book chapter was collected from grandmothers participating in Project GRANDD (Grandparents Raising and Nurturing Dependents with Disabilities) located in Atlanta, Georgia. Innovative Solutions for Disadvantage and Disability (ISDD) established this program in 2005. Project GRANDD offers support to grandparents who are raising grandchildren with disabilities, chronic illness, and behavior or learning difficulties. The ISDD provides an array of services to these grandparents such as support groups, educational meetings, in-home visits, case management services and referrals for medical, legal and counseling services. Currently the project serves 95 grandparent caregivers and nearly 200 grandchildren. The vast majority of caregivers involved in Project GRANDD are African-American female grandparents who have fixed incomes at or below the poverty level in the United States. Many are unable to work due to the complexities of the disabilities of their grandchildren. Eligibility criteria for families enrolled in Project GRANDD include a grandparent living fulltime with at least one grandchild with a disability.

Data came from custodial African American grandmothers that participated in two studies conducted September-December 2012 and 2013. In the first wave of data collection, a pilot study comprised of seventeen pediatric and geriatric nurse practitioner students assessed the health needs of grandmothers participating in Project GRANDD.The aim was to improve the health of the grandparents in order to provide a more stable placement for the dependent grandchildren. Project GRANDD serves as one of the nursing school’s community learning sites and is part of the service learning that students receive. Each student pair was assigned a grandmother client and given instructions on how to do a thorough health assessment via house visits and phone calls. There were a total of nine student-grandmother triads.

During the first wave of data collection students used a “windshield” survey to identify community resources, including grocery stores, pharmacies, healthcare facilities, childcare centers and transportation. Neighborhood risk factors such as amounts of trash and graffiti, fast food establishments, visible loitering, lighting and proximity to public transportation were documented descriptively. Student pairs also gathered detailed medical history and medication usage as well as conducted a thorough review of systems and performed a comprehensive physical examination. The students then did a room-by-room safety and environmental assessment of the home looking for fall risks, trip hazards, mold and mildew problems or other health and safety risks. Finally, they asked grandmothers to reflect on what they believed their most pressing health priorities were and how the students could help them. Students collaborated with faculty to develop and implement a prioritized care plan. The Project GRANDD administrator provided information about community resources that could be used to meet objectives in the care plans. In addition, nursing faculty and the GRANDD administrators provided clinical guidance and debriefings for the students throughout the course of the pilot [18].

The second wave of data collection involved phone interviews with 36 Project GRANDD participants concerning the healthcare needs of grandchildren and how those needs were being met. This was viewed from the grandparent caregiver perspective. After compiling demographic information including age, marital status, household composition, number of grandchildren and length of time in care, and disabilities. Surveys were structured based on this preliminary data. Although the surveys assessed the healthcare needs of the grandchildren it was grandparents who provided the information. Surveys were conducted over the phone, and the results were subsequently entered into excel to be collected and compiled. The resulting data was put into graphical formats, and analyzed in order to highlight what needs were being met and which remained unmet to date. From this, we constructed suggestions of implementations and policies that could be put in place moving forward. This project received IRB approval from Morehouse School of Medicine.

Children’s Health

Children being cared for across the two studies discussed above experienced a wide range of intellectual and developmental disabilities, defined as “a group of disorders characterized by a limited mental capacity and difficulty with adaptive behaviors” and “severe, long-term disability that can affect cognitive ability, physical functioning, or both” respectively [28]. The most prevalent IDD among children in this study were autism, Fetal Alcohol Syndrome, learning disability, behavior disorder and cerebral palsy. In addition to IDD children also experienced related or additional health issues including common conditions such as allergies and asthma, as well as more specific conditions such as depression, seizures, sickle cell anemia, and heart conditions. Table 6.1 provides counts of the health conditions and overall prevalence. In fact, the majority of the 85 children experienced two or more health conditions (see Fig. 6.1).

Table 6.1 Medical condition for the grandchildren
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Fig. 6.1
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Number of health conditions

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Caregivers Health

Grandparents participating in this study reported multiple severe comorbidities, such as cardiac disease, hypertension, depression and arthritis. Overall, all of the grandparents were in poor health. Their health status was consistent with other studies, which found not only did caregiving grandparents report these and other illnesses [19–21], but also their poor health exacerbates and is exacerbated by additional chronic conditions and stressors, such as limited mobility, lack of transportation, financial strain, insufficient formal and informal support and fear of who will assume responsibility for their grandchildren should they seek necessary medical treatment. As a result, grandparents tended to neglect their own needs and pressing health concerns. The intervention provided by the nursing practitioner students was well received by Project GRANDD participants who reported increased health literacy and self-care behaviors. Its effectiveness was also evident in the students’ ability to provide medication reconciliation and education to this highly vulnerable population of caregivers. No pre- and post- tests were conducted that aptly capture the integration of information related to medication, diagnoses, stress relief, and dietary changes. However, participants reported that making the process of discussing their (and not their grandchildren’s) health needs convenient and tailoring the intervention to meet their unique needs had a positive impact.

Barriers and Resources

Consistent with previous research, the grandfamilies in this study experienced multiple stressors with few resources available to mitigate negative consequences. In addition to the health challenges experienced by both caregivers and their charges, grandparents reported two additional stressors: (1) economic and (2) environmental. Similar to caregiving grandparents in nationally representative samples, those in this study identified inadequate finances as a primary stressor and a barrier to achieving and maintaining wellbeing [9, 25]. Specifically, they reported that inadequate income given their family size and an inability to meet eligibility criteria for Social Security because of age were sources of stress and barriers. Interestingly, an inability to meet eligibility criteria for Medicaid and Medicare (eligibility begins at 65 years of age) programs were identified as additional health-related barriers. The interconnectedness between economic, health, and environmental barriers/stressors was profound in that they highlighted the lack of access to needed resources and services. For instance, grandparents reported that the environmental barriers they most grappled with were hazardous living conditions for their grandchildren and a lack of mobility devices and community transportation for themselves. Again, these issues point to the need to make necessary resources and services more readily available to these highly vulnerable families. In addition to resources and services being out of reach for many grandfamilies, they pay a high cost in that a lack of access can undermine their ability to obtain or maintain custody of their grandchildren, particularly when child welfare system involvement mandates that homes adhere to strict specifications [8]. Therefore, CBOs that both provide grandfamilies with critical resources and services, as well as connect them with those institutional supports (e.g., medical care, educational support, legal services) that will sustain their families far beyond their involvement with the CBO are essential to the health and wellbeing of these families [25, 26].

The case studies presented below capture the complex relationship between caregivers’ and grandchildren’s health, barriers to accessing available resources and services and the important role that non-profit and community-based organizations play in helping grandfamilies – especially those grappling with intellectual and developmental disabilities – to overcome these impediments.

  • Case Study 1 (The Jermaine Family): Ms. Jermaine (not her real name) exemplifies what custodial grandparents in the Project GRANDD program had to manage with respect to their grandchildren’s multiple and co-occurring health challenges, their own impaired health, and with scant resources. The 65-year-old African American great-grandmother was raising two great-grandchildren – an 8-year-old with Fetal Alcohol Syndrome and Autism and 7-year-old with Fetal Alcohol Syndrome and behavior difficulties. At the time of case management, Ms. Jermaine was in ill health and in need of a hip replacement. She was unable to stand upright or move around the home easily. She was lethargic and spent most of the day watching television or reading her Bible. Although the children were well dressed and cared for, the home was dirty and cluttered. Several environmental hazards were observed including, clusters of medications on a nearby table with some duplicated and/or outdated; magazines and mail accumulated from the past 5 years stacked in the living room; children’s important health and educational records disorganized; a space heater in the bathroom with plug and cord lying inside the bathtub; a smoke detector beeping without battery; and insect infestation (e.g., bedbugs on couches in the front room, cockroaches under rugs in the kitchen, spiders in the bookcase, bugs scaling the drapes along the front window). Ms. Jermaine accepted our reorganization assistance in order to create a safe and healthy home environment for her family. The family was also a recipient of holiday gifts from the Adopt-A-Grandparent Program. Sadly, shortly after the changes were instituted and gifts were provided, Ms. Jermaine’s house caught fire. Fortunately, it was the sound of the smoke detector (now operational because of the nursing intervention) that assisted the great-grandchildren and grandmother to safety with only the clothes on their backs. It was discovered that there was faulty wiring in the home. The Jermaine family lost everything. The Red Cross and Ms. Jermaine’s church community along with Project GRANDD provided temporary housing, clothing, food and transportation. The family was shortly relocated to another Section 8 home. Since all clothing and furniture was lost during the fire, volunteers donated clothing, coats, furniture and household supplies.

  • Additionally, the family was assisted with obtaining the school supports the children needed and helping them by obtaining new birth certificates and other documents lost in the fire. Importantly, the children were provided with additional supports to deal with the emotional trauma of the event. Ms. Jermaine recently had much needed hip replacement, during which time her niece cared for the children. Considerable time was spent convincing this and other grandmother’s to tend to their health and to view it as a necessary component of caregiving. Ms. Jermaine has become much more aware of her resources and is more empowered to obtain them.

  • Case Study 2 (The Sylvester Family): Ms. Sylvester is a 63-year-old, custodial grandmother in poor health. She is currently raising three grandchildren, and, until recently, had cared for two great-grandchildren as well. The grandchildren have been with her since birth and share a biological mother who suffers from mental illness. As a result, she has been deemed ‘unfit’ to raise the children with whom she has minimal communication. In fact, Ms. Sylvester’s grandchildren call her “momma”. The children experience multiple and co-occurring health problems; the 15-year-old male has Autism and Bi-Polar Disorder, the 10-year-old male has Autism and CP, and the 6-year-female was born prematurely and has asthma. The 6-year-old granddaughter is the only one of the three grandchildren in Ms. Sylvester’s care developing satisfactorily.

  • As noted, Ms. Sylvester’s health is poor. She reports a past history of alcoholism. She is a strong disciplinarian and has solid religious beliefs and practices. Her primary focus is caring for her grandchildren. At the time nursing students provided case management, Ms. Sylvester needed heart valve and leg surgeries. Like custodial grandmothers in general, and especially for those participating in Project GRANDD, who care for children with increased medical needs, Ms. Sylvester kept putting off surgery because she was fearful that no one could care for the children. She was deeply concerned with the effect leaving would have on her oldest grandson with Autism. During the time data for the project were collected, Ms. Sylvester was rushed to the hospital with a medical emergency. The emergency condition was resolved and dietary changes were recommended. Her discharge process was monitored and the family was provided with informal family supports so that Ms. Sylvester could get the surgeries she needed.

  • Currently Ms. Sylvester is no longer able to drive, has difficulty walking and is limited to trips in her community. She rents Section 4 housing and has moved to what she considers a safer neighborhood. She would like to relocate to a home that is in closer proximity to the resources and services her family needs, but due to financial struggles she has been unable to do so.

  • Project GRANDD has been able to assist Ms. Sylvester by increasing her understanding of her own physical limitations, health conditions, and nutritional status. It has also provided resources for the grandchildren’s specialty appointments, assistance with school IEP (Individual Education Plan), transportation, and holiday gifts at Christmas time. Home improvements were initiated by installing adaptive equipment so that Ms. Sylvester can bathe on her own. Finally, we keep her feelings of isolation at bay by making monthly telephone calls.

Implications

Although this study is limited by its purposive sample of grandparent caregivers participating in Project GRANDD and findings are not generalizable to all kin caregiving families, there are a number of conclusions that can be drawn, many of which are consistent with extant literature. Findings presented in this chapter and those found in past research suggests that there is a crisis of care for grandparents raising their grandchildren; they are more likely than their parental counterparts to be caring for children grappling with developmental, behavioral, emotional, and physical problems [4], and much less likely to have the resources they need to address them [29]. Previous research on grandparent caregiving found that grandmothers reported inconsistent and inadequate family and community support, in large part due to the multiple social and economic conditions they confront [26]. Research examining the formal support services received by custodial grandparents focuses primarily on financial assistance programs, the dearth of community level resources, and grandparents’ experiences with human service agencies [26, 29]. Issues that have received less attention include the integration of non-economic forms of formal services into family functioning and the search for resources needed to respond to the unanticipated demands of carework, including managing the multiple needs of the children. Without a doubt, there are not enough formal support services available to GPHH, especially given the dramatic rise in this family form and the inexorable needs of children. Given this reality, some study participants reported inadequate support and unavailability. However, others reported that, were it not for their institutional ties – including CBO’s like Project GRANDD – managing their caregiving demands would have been far more challenging, if not impossible.

Based on these findings, there are a number of ways in which policy makers and practitioners might bolster caregivers’ ability to meet their own and their grandchildren’s needs. This is especially pertinent given the increased and manifold challenges associated with caring for children with IDD. First, because many grandparents report that finding information on existing programs can be difficult to access, implementing state-based Kinship Navigator systems would be beneficial, especially during family crisis. These systems offer publications, hotlines, and help desks that link caregivers to available resources. Second, medical and educational consent laws would mitigate the difficulties grandparents without legal custody experience when enrolling children in school or getting them medical care. Currently, fewer than half of all states have such laws in place. A third policy recommendation is to implement and expand subsidized guardianship programs, which enable grandparents caring for children in the child welfare system to use legal guardianship as an alternative permanency option to adoption [30]. While at the same time maintaining resources and services provided by the state. Fourth, social services agencies contracted with the Department of Health and Human Services offering extended kinship and grandfamily programs are permitted to do so for a specified duration of time. This is often grossly insufficient given the complexity and magnitude of the issues confronting these families. As such, the length of time families are allowed to participate in these programs could be increased. Fifth, social service agencies, Kinship Navigator systems and other formal services targeting grandfamilies need to take into consideration the specific concerns and needs of families impacted by IDD. Substance abuse, neglect and other reasons that contribute to grandparents’ assumption of caregiving responsibilities are also factors that increase risk for IDD among children. Integrating their unique experiences into policy and programmatic interventions can lessen these risk factors. Lastly, the poor mental and physical health of custodial grandparents would be improved by providing child care assistance, respite care, and access to mental health services and affordable medical care.