CASE STUDY 1
CJ. is a 54 year-old, married, Black woman who is a college graduate. She is currently unemployed, receiving Department of Human Services (DHS) care payments but no other forms of financial assistance. CJ. lives with her 62-year-old husband, who is in good health and her 5-year-old granddaughter, Jaynelle. CJ. has custody because of a court action based on evidence of child abuse and neglect by the child's mother, CJ. 's daughter, who was using drugs. Jaynelle has lived with her grandmother for nearly 2 years. Jaynelle is in excellent health, was born without any prenatal or postnatal complications, and is on no medications.
CJ. states that caring for her granddaughter is a priority, even though things have been eliminated from her Ufe since taking the child into her home. CJ. feels that her extended family works together at caring for Jaynelle in all of the daily activities. In describing her situation, CJ. says: "I am raising a family over again. She (the grandchild) needs to be first priority because of her emotional needs."
While CJ. describes herself as in "good health" and has no physical problems, she states she is "a little stressed from the role." Finances are a major concern. Because of a substantial income loss (her unemployment is a result of staying at home with Jaynelle), the family is deeply in debt. CJ. does not feel that her financial resources are adequate to pay for items required in caring for her granddaughter.
CASE STUDY 2
R.M. is a 63-year-old, divorced, Black woman who is caring for her 6-year-old grandson, Mark. Her husband left her because "...(he) did not want to be tied down to a child." R. M. obtained legal guardianship of her grandson from her daughter, who is a heroine addict and is currently in jail. Another grandchild from the family died at home, and there was evidence that Mark had been neglected.
R.M. is currently enrolled in college. She is unemployed, receives public assistance and food stamps but does not receive DHS payments or assistance with her utilities. Mark has been diagnosed with asthma and requires multiple medications. He was on a ventilator immediately after birth and required extended hospitalization postnatally. Mark has been with R.M for more than 5 years.
R.M. feels overwhelmed by the problems she has caring for her grandson and states it is difficult to pay for his health needs. She states that her financial situation is very stressful and that "we run out of food for more than a week each month." Further, R.M. feels that all of her activities are centered around caring for Mark. She has eliminated most of the other activities from her life since she began caring for him. Although she took Mark in willingly, she feels that her health has suffered by being the primary caregiver for her young grandson. R.M. states that her own health is "fair," yet notes that caregiving was more difficult when Mark was younger and sicker.
Names in the case studies have been changed for anonymity purposes.
CJ. and R.M. are typical of an emerging role for grandmothers: rearing grandchildren. No group has challenged conventional thinking concerning health care of the elderly as dramatically as the growing numbers of grandmothers who assume responsibility for raising their grandchildren. At a time when health concerns cluster around a healthy response to the aging process, some women are reassuming the primary caregiver role. Major reasons for this phenomenon include the increased use of addictive substances among young women; the growing numbers of incarcerated childbearing women; and the increasing numbers of childbearing women infected with HIV. Maternal and paternal grandmothers are finding themselves in the position to rear their absent children's children - children who might have been exposed to alcohol and other substances, may have come from chaotic family situations, or may be HIVinfected themselves. This article focuses on grandmother caregivers, some issues which affect them and their grandchildren, and the nursing implications for dealing with this growing population.
The role of caregiving has a strong tradition in the structure and system of families. Family caregiving takes place within a context because the bonds of affection and reciprocity are based on past relationships (PaIlett, 1990). Grandmothers are emerging as critical figures in the changing American family (Flaherty, Facteau, & Garver, 1987).
In 1990, the Census revealed a 40% increase in the number of children living with relatives during the past decade. Approximately 12% of Black children, 5.8% of Latino children, and 3.6% of White children lived with their grandparents at that time, and parental substance use was cited as the major reason (United States Bureau of the Census, 1991). However, the health care delivery system has not considered the function of grandmothers' raising grandchildren as a factor in determining health care strategies for aging women, especially poor women of color.
Several studies affirm the difficulties experienced by grandmothers who raise their grandchildren. For example, Dressel and Barnhill (1994) obtained qualitative data from eight grandmothers and 21 grandchildren who had participated in a large demonstration project of three generational families, where the mothers were incarcerated and the grandmothers cared for the grandchildren. These grandmothers reported a wide range of material, legal, and psychosocial needs that they and their families encountered. They required assistance with virtually all of IhVs necessities including economic resources, clothing for children, housing, utilities, and health care. Psychosocial concerns included the need for respite from child care responsibilities and assistance in improving their relationships with their incarcerated daughters. Further, many grandmothers were challenged by concerns about their grandchildren's unruly behavior.
Minkler, Roe, and RobertsonBeckley (1994) conducted an exploratory study of 71 Black grandmothers raising grandchildren as a consequence of the crack-cocaine epidemic. These grandmothers reported continued strong social ties among relatives and family and a variety of family and community support systems. However, they also reported decreased contact with family and friends other than confidantes and a decline in marital satisfaction. Kelley (1993) examined caregiver stress in a sample of 41 grandparents who were raising grandchildren. These grandparents reported increased psychological distress as measured by the Symptom Checklist-90 Revised Inventory (Derogatis, 1983). Social isolation and restriction of role, as measured by the Parenting Stress Index (Abidin, 1990), were found to be predictors of increased psychological distress. In addition, grandparents reported that parental substance abuse and child maltreatment were the primary cause of their raising their grandchildren.
In contrast to the above studies, a study by Adelmann (1994) hypothesized that multiple role involvement in late life (including caregiving) would be linked to greater psychological well-being. The investigator conducted a secondary analysis of 1,644 racially mixed men and women older than 60 years of age, obtained from a national sample. It was determined that multiple roles, including employee, spouse, parent, volunteer, homemaker, grandparent, caregiver, and student were associated with higher life satisfaction and lower depressive symptoms. Thus, under certain circumstances, there may be some advantages, as well as problems, for the elderly woman seen as the result of a parenting role.
ISSUES FOR GRANDMOTHER CAREGIVERS
The above-cited studies reinforce the problems identified in the case studies. While being a parent is always fraught with complexities, grandmothers who assume the parenting role of their grandchildren have many additional issues with which to contend. The placement of the grandchildren often creates new needs and places new demands on the grandmothers' environments. These women have already raised one family and are being asked to begin again, frequently with young and sometimes compromised children, such as R.M. and her asthmatic grandson. Often grandmothers must resolve major relationship problems with their own children before they can truly accept the parenting responsibility for their grandchildren (Burton, 1992; Miller, 1991; Minkler & Roe, 1993). A second issue concerns the financing of the parental role for grandmothers. Many of the women who assume this role are from poor backgrounds. There is little available state or federal funds for grandmothers who raise their grandchildren. Grandmothers often do not qualify for foster parent status because of stringent state requirements and thus do not qualify for resources that foster parents receive. Often, grandparents do not qualify for federal or state entitlement monies ear-marked for children on their own. Even grandparents who have grandchildren infected with HIV do not receive additional funds to support the sometimes extensive and expensive care such children require. Social Security funding (SSI) for disabled children is the only other assistance grandparents receive to support their grandchildren's care, and this money is being questioned by the current congress.
A third issue concerns the health of the grandchildren and the health of the grandmothers. For grandmothers, raising grandchildren who suffer from emotional or physical health consequences of prenatal drug exposure or HIV/ AIDS can be extremely challenging (Sherwen, Boland, & Gilchreist, 1993). Even grandchildren who are not directly affected by these problems, but are siblings of directly affected children, have likely lived in a chaotic home environment and have many psychological and/or developmental problems as a result (Meyers & Dennis, 1992). Compounding the potential difficulties in caring for sick or impaired children are the possible health problems experienced by the grandmothers themselves. Typically, poor and aging women suffer from a variety of health problems. Little money and time is expended by these women on health promotion or maintenance activities. For many, energy is expended not only on raising grandchildren but on other family members who may require attention and care, such as a very frail, elderly parent, a disabled sibling, or a spouse. Health care providers need to consider the complexities of these family units before suggesting healthrelated or illness-related interventions for grandmothers (and grandfathers) raising grandchildren.
While nurses and other providers have formulated health care delivery models addressing the health needs of an aging population, little attention has been directed to the needs of those elderly women who find themselves once again in the parental role (Dowdell, 1995). The grandmothers' physical health is critical to success within the caregiving role. It is also important for ensuring the health of the grandchildren and the general well-being of the grandmothers and their families. Research has demonstrated that grandmother caregivers, such as CJ., who maintain their own health and perceive it to be high have lower stress levels, higher esteem, perceive more family support, and report less caregiving impact on their day-to-day schedules (Dowdell, 1995). Further, grandmothers who reported a decline in their own health after becoming a caregiver also reported that they had sicker grandchildren at home, as demonstrated by correlation between the grandmothers' ratings of the grandchildren's health as poor and the rating of their own health as poor (e.g., R.M, and her asthmatic grandson). The more often the grandchildren saw the doctor, were hospitalized, and were on medications, the more likely the grandmothers were to evaluate their esteem as low. Also, grandmother caregivers who were raising these sick grandchildren, reported having higher levels of stress than those grandmothers who did not have sick grandchildren (Dowdell, 1995). Clearly, the addition of the parental caregiving role has a variety of implications for health care planning for aging women. Some implications for health care of grandmother caregivers include:
* Health needs of grandmothers must be assessed by staff and advanced practice nurses not only in light of their age and gender but also within the context of raising a child. Grandmothers who have sick grandchildren often report a decline in their own health and self-esteem. Necessary resources are very different for this group of aging women than for women who do not have childrearing responsibilities. Resources that may provide necessary assistance to grandmother caregivers are: access to developmental psychologists, juvenile social workers, and psychiatric clinical nurse specialists or psychologists; primary care delivered by a family nurse practitioner or physician generalist; intervention strategies planned by a team including an adult or geriatric nurse practitioner and a pediatric nurse practitioner; day care for the grandchildren, allowing the grandmother to remain in work if she so chooses; respite care for the grandchild to allow the grandmother to include other activities and people in her life; and access to food stamps and other monies, such as SSI for disabled children for special medical needs of the grandchildren.
* Indicators of actual or potential poor health outcomes for both grandmothers and grandchildren need to be identified early, and interventions need to be planned for positive outcomes. For example, anticipatory discharge planning by staff and advanced practice nurses for hospitalized grandmothers must include information concerning who is in the grandmothers' homes and for whom they care to ensure adequate post-hospitalization recovery. Health care professionals cannot assume that elderly women will not resume a "caregiver burden" when they return home, if they are caring for young children.
* Grandmothers need information concerning health and illness care of their grandchildren, especially sick grandchildren. Care of grandchildren who require specialized or complex care, such as those afflicted with asthma or HIV infection, can be extremely stressful to the grandmothers. Information concerning delivery of care, as well as resources available to fund such care and support services that may be accessed, are rarely discussed with grandmothers. In addition, grandmothers raising grandchildren will need information concerning basics such as immunization schedules, norms for growth and development, and nutrition for children.
* Combined health and illness care services and clinic scheduling for this population are essential. Health and social services that address both the grandmothers' and grandchildren's needs would allow for better coordination and monitoring of care by nursing professionals and would reduce the grandmothers' level of stress. For example, influenza and childhood immunizations might be offered at the same site. In addition, the preparation of nurses adept in both specializations of geriatrics and pediatrics needs to be increased.
* Formal and informal support systems for grandmother parental caregivers need to be developed. Many grandmothers indicate that they no longer have easy access to some traditional support systems, such as extended family or church congregations (Sherwen et al., 1993). Informal support groups of other grandmothers who care for grandchildren might be developed and planned to meet during clinic hours for grandchildren. In addition, formal support systems, which include nursing and other health professionals, should also be convened. Formal support systems and networks of grandmothers and health care professional may serve useful advocacy roles within the broader community for individual members.
For the grandmothers, such as CJ. and R.M. in the case studies, the role of grandparent caregiver offered both positive and negative aspects. Both of these women would like a change in the delivery and access to health care for themselves and their grandchildren. When asked to describe her situation, CJ. said:
She (the granddaughter) needs constant behavior modification and positive reinforcement. When you're a grandparent it is definitely unconditional love. She has had stepping stones and setbacks because of rejections by [her] biological parents and has some peer relationship problems. These children need consistency, counseling, stability, security, and a lot of praise and love daily.
R.M. had a similar response when asked the same question. She stated:
My grandson knows the problems of the addicted people (like his parents) and does not desire to become a drug slave with no will of his own. The greatest blessing is the number of people who help me with him. He is very bright and very caring for other people. We are very grateful for all the help we receive, though most of it is comes from unpaid volunteers. There is no public assistance or public sympathy for those of us in this situation.
IMPLICATIONS FOR PUBLIC POLICY DEVELOPMENT
A variety of sources indicate that grandmother parental caregivers are a growing alternative to the foster care system in providing homes for children whose biological parents can no longer care for them. Grandmothers are often willing to assume the care of grandchildren because of feelings of love, responsibility, and family obligation. Yet there are few societal resources allocated to grandmothers who raise and care for their grandchildren. The concept of "caregiver burden" has often been interpreted as adult children caring for aging parents. This concept must be expanded to include aging grandmothers (or grandfathers) caring for their grandchildren to adequately address health care policy for aging women.
Especially when children are sick or disabled, the expense and caregiver burden for grandmothers is great. The immediate reasons for grandmothers assuming care of grandchildren often involve the biological parents' drug use or HIV infection. Thus, many grandmothers will be taking care of sick, disabled, or dying children.
Policy must be developed to provide financial and supportive resources for grandmothers who care for their grandchildren. In addition, the health of grandmothers must be preserved by developing appropriate interventions for them in their life circumstances. Social and health care policy development must include this population in planning efforts.
The health care system is likely to favor providers who prove to be costeffective in delivering care to grandparents and their grandchildren. Nurse practitioners, especially family nurse practitioners who practice with children and the elderly, are an excellent source of care for these individuals. The supply of family nurse practitioners will need to be increased to ensure optimum care of grandmothers and their grandchildren.
Current government-sponsored insurance programs are not geared to pay nursing providers for professional care. Similarly, many commercial insurers do not structure their payment procedures around nonmedical providers. Research (Dowdell, 1995) supports recommendations that nurses can be cost-effective and highquality providers of care to grandmother caregivers and their grandchildren. Policy advocates need to consider recommendations for paying nurse providers.
NURSING'S ROLE AND FUTURE RESEARCH
The physical health of both grandmother caregivers and grandchildren plays an important role in the wellbeing of caregivers. Nurses must address the physical health needs of grandmothers and their age within the context of raising grandchildren to facilitate access to resources. Indicators of poor outcomes for both grandmother caregivers and grandchildren need to be identified early, and interventions must be planned for positive outcomes.
Nurses are in an ideal position to identify effective interventions to reduce the stress grandmothers feel by investigating additional ways to support these women who have taken on the responsibility of primary caregiver to their grandchildren. The prevention issue of keeping young people off drugs and providing community-based support when adolescents start acting out is another area for research. It can be devastating for grandmothers to see their own children slowly destroy their Uves and then discover that their grandchildren are beginning some of the same destructive behaviors. Other avenues of nursing research include:
* Examining grandmother caregivers income levels in addition to the perception of financial status as it impacts on caregiver burden and physical health.
* Longitudinal research comparing behavioral outcomes in grandchildren raised by grandmothers and foster parents.
* Investigation of caregiver coping strategies developed by grandmothers who experience more positive perceptions of caregiving.
The number of grandmothers assuming responsibility for raising their grandchildren is increasing, and their voice is just beginning to be heard. Many grandmothers are faced with grandchildren whose health needs are vast and complicated. The movement from informal peer support to required formal support and attention from the health care system and providers is intensifying. Formulating adequate and active health policies to address the needs of grandmother caregivers is a mandate to nursing for maintaining healthy caregivers and healthy children.
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