Journal of Gerontological Nursing

GRANDMOTHER CAREGIVER REACTIONS TO Caring for High-Risk Grandchildren "I could write a book!"

Elizabeth Burgess Dowdell, PhD, CRNP, RN

Abstract

designed and conducted to examine the relationship between caregiver burden and caregiver physical health for grandmothers raising their high-risk grandchildren. The sample consisted of 104 grandmothers. The findings indicated that caregiver physical health correlated strongly with level of burden and financial status. Further analysis suggests physical health variables had an observable impact on caregiver burden.

Because this study indicates, from descriptive and correlational statistics, that the well-being of the grandmother and grandchild are both linked to the grandmother's physical health, there are numerous nursing interventions that may support a positive outcome for both. The provision of emotional and psychosocial support, coupled with health education and periodic health evaluations, are known to improve a grandmother's perception of her own health. Nurses can use the measures of caregiver burden to develop care plans targeting the health issues most likely to improve a grandmother's functional ability to remain the primary caregiver for a high-risk grandchild.

Abstract

designed and conducted to examine the relationship between caregiver burden and caregiver physical health for grandmothers raising their high-risk grandchildren. The sample consisted of 104 grandmothers. The findings indicated that caregiver physical health correlated strongly with level of burden and financial status. Further analysis suggests physical health variables had an observable impact on caregiver burden.

Because this study indicates, from descriptive and correlational statistics, that the well-being of the grandmother and grandchild are both linked to the grandmother's physical health, there are numerous nursing interventions that may support a positive outcome for both. The provision of emotional and psychosocial support, coupled with health education and periodic health evaluations, are known to improve a grandmother's perception of her own health. Nurses can use the measures of caregiver burden to develop care plans targeting the health issues most likely to improve a grandmother's functional ability to remain the primary caregiver for a high-risk grandchild.

ABSTRACT

During the past decade there has been an increase in the prevalence of grandmothers raising their grandchildren because of parental drug use and child neglect and maltreatment in the United States. A study was My family has been torn apart by our oldest daughter. Her son, my grandchild, is hyperactive and has emotional problems that affect the rest of the family. We can't do anything without an uproar! When we take him somewhere, it takes all of my energy to control him, and I don't enjoy myself very much. My marriage has suffered also! And then I worry that he [grandson] will turn out just like my daughter - a drug addict and a jailbird. I don't think I could take it. I love my grandson! Everyone has a negative attitude toward him because he acts so bad most of the time. We love him and want to help him, but it is a constant battle.

-Lily, a 45-year-old grandmother on her experiences as a caregiver to her 7-year-old grandson.

Approximately 2.5 million grandparents in the United States have assumed primary caregiving responsibility for their grandchildren (U.S. Census Bureau, 2000). An estimated 4.5 million children live with a grandparent caregiver, and these grandparent families comprised 7% of all families with children younger than 18. These statistics represent a 50% increase in the number of children living with grandparent caregivers since 1990 (U.S. Census Bureau, 2000). Of these grandparent families, the majority of caregivers, more than 1 million, are grandmothers. These families are most often headed by single women with limited financial resources (U.S. Census Bureau, 2000). The issues faced by those whose own children are not capable of parenting are both complex and painful. For many individuals, raising children is the most stressful role they have experienced.

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 women who find themselves, once again, in the parental role (Davidhizar, Bechtel, & Woodring, 2000). To better describe the experience of grandmothers who are parenting their own grandchildren], a study was conducted with a sample consisting of 104 grandmothers. The purpose of the study was to describe the relationships between caregiver burden and grandmother physical health. Findings specific to caregiver burden and grandmother caregiver physical health, as reported by the grandmothers, will be discussed in this article.

BACKGROUND

Grandmother Caregivers

The role of kinship caregiving (family members who provide care to vulnerable family members) has a strong tradition in the structure and system of families. Grandparents, specifically grandmothers, traditionally have assisted with some of the caregiver functions with their grandchildren, regardless of their socioeconomic class, culture, or ethnic backgrounds. Becoming the primary caregiver to a grandchild can occur for a variety of reasons such as (Davidhizar et al., 2000; Dowdell & Sherwen 1998; KeIley, Yorker, & Whitley, 1997; Meyer, Kropf, & Robinson, 2002):

* Teen pregnancy.

* Death of a grandchild's parent.

* The increasing number of incarcerated childbearing women.

* The increased use of addictive substances among young women.

* The increasing number of childbearing women infected with HIV.

Some grandmothers step into the role of parent when asked by their state child welfare agency representatives, who are mandated by law to place children with relatives whenever possible.

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. For many women, being a grandmother caregiver is not easy and the stress associated with taking on the role of caregiver can have multiple repercussions in their lives. These include adjustment to the caregiver role, financial stress, lack of living space to accommodate grandchildren, role restriction, and special needs of those grandchildren (Davidhizar et al., 2000; Minkler, Fuller-Thompson, Miller, & Driver, 1997).

Caregiver Burden

The activities and tasks surrounding the role of caregiver are often viewed in response to caregiver reactions and sometimes are described as caregiver burden. Thus, caregiver burden relates to the physical, psychological, emotional, social, and financial strains and problems that can be experienced by family members caring for a chronically ìli population (Chou, 2000; Davidhizar et al., 2000; Given et al., 1992; Hunt, 2003; Kelley et al., 1997). The caregiver defines the importance and significant meaning of the caregiving role. Frequently, it is associated with aspects of the role that are more subjective such as feelings, attitudes, and emotions expressed about providing care. In addition, caregiving can affect the caregiver's esteem, which is the confidence or satisfaction caregivers feel as a result of caregiving (Hunt, 2003). Many of these attributes of burden can be applied to grandmothers who are caring for their grandchildren.

The placement of the grandchild often creates new needs and places new demands on the grandmother's environment. Changes in schedules can affect caregivers who work, adding disruptions and withdrawal from work role involvement (Davidhizar et al., 2000; Meyer et al, 2002; Minkler et al., 1997; Muai, 1998). The financial drain of caring for a child can be immense for many grandmother caregivers. The cost of child care, after-school activities, health care, and household expenses can force many grandmothers into using their savings or even to stop working because the cost of child care can negate their earnings (Davidhizar et al., 2000; Dowdell & Sherwen, 1998; Kelley et al., 1997; Minkleretal., 1997).

Table

TABLE 1GRANDMOTHER PROFILE

TABLE 1

GRANDMOTHER PROFILE

The caregiver's health and functional ability are recognized as factors that can contribute to caregiver burden (Davidhizar et al., 2000; Dowdell, 2004; Dowdell & Sherwen, 1998; Meyer et al., 2002). For many grandmothers, raising children who suffer from emotional or physical health consequences of prenatal drug exposure or HIV/AIDS can be extremely challenging. Even children who are not directly affected by these problems, but are siblings of directly affected children, have likely lived in a chaotic home environment, and may have many psychological or developmental problems as a consequence (Casper & Bryson, 1998).

Compounding the potential difficulties in caring for a sick or impaired child are the possible health problems experienced by the grandmother herself and the potential lack of financial support. Typically, poor and aging women suffer from a variety of health problems, with this group expending little money and time on health promotion or maintenance activities (U.S. Department of Health and Human Services, 2000). For many, energy is expended not only raising grandchildren, but toward other family members who may require attention and care such as a frail elderly parent, a disabled sibling, or spouse (Meyer et al., 2002; Musil, 1998).

METHODS AND STUDY DESIGN

A descriptive, correlational study was undertaken with a convenience sample of 104 grandmothers to describe the experience of parenting one's own grandchild and to examine the relationships among caregiver burden and grandmother physical health. Prior to the beginning of data collection, permission was obtained to conduct this research from the Institutional Review Board at the author's institution.

Instruments

All three of the instruments used in this study were self-administered paper-and-pencil questionnaires. The first questionnaire, the Caregiver Reactions Assessment (CRA), is a 24item measure of the objective, as well as the subjective strains and reactions to the role of caring for another family member in the home (Given et al., 1992). For the purpose of this study, caregiver burden was measured and defined as a process within the context of five subscales from the CRA instrument (Given et al., 1992). These subscales are:

* Caregiver esteem.

* Level of family support.

* Impact on finances.

* Impact on schedule.

* Impact on caregiver health.

The grandmother's responses to each item were recorded on a 5-point Likert scale ranging from strongly agree to strongly disagree and were divided into subscales.

Results indicated that, overall, the five subscales were affected by specific demographics either individually or en masse. Caregiver burden was defined as a process within the context of five standardized subscales. Reliability tests were conducted on each caregiver burden subscale using Cronbach's alpha coefficient to test for internal consistency. A i test was performed on the means scores of the grandmother caregiver sample and Given's caregiver samples (Given et al., 1992) and no significant differences were found. The grandmother caregiver population was an acceptable population on which to use the CRA based on the two sample means, standard deviations, and Cronbach's alphas.

The second questionnaire used in this study was the Caregiver Physical Health Questionnaire, adapted from the Older Americans Resources and Services Instrument (OARS) (Given et al., 1992) and assessed caregiver physical health. The physical health of the caregiver was measured in the 14-item questionnaire, which assesses the following:

* Perception of stress.

* Number of sick days.

* Previous health status.

* Hours of sleep at night.

* Current physical health.

* Number of medications taken.

* Global perception of health status.

* Implication of caregiving role on health status.

* Perceived changes in health since becoming a caregiver.

The third questionnaire was a socio-demographic data sheet, which identified ethnicity, grandmother family of origin information, grandchild information, and household information. It also provided space for grandmothers to write additional comments related to their experience of the caregiving role. All three instruments and interviews were administered and conducted by the author during one 45minute session.

RESULTS

The Sample

Table

TABLE 2GRANDMOTHER HEALTH PROFILE

TABLE 2

GRANDMOTHER HEALTH PROFILE

The women who participated reflected a variety of socio-cultural backgrounds. The majority (68%) of the grandmothers in this study were maternal-grandmothers, caring for their daughter's child, with an age range of 31 to 77 years with the mean age being 54.8 years (SD = 8.92). Fifty-eight percent (60) were Black, and 38% (40) were White; two participants were Native American and two were Hispanic Most (48%) were currently married, 39% had completed high school, and the majority (83%) of the grandmothers lived in households comprised five or less individuals (Table 1).

Grandmother Profile

The majority (60%) of the grandmothers in this study rated their current health as being good or excellent, 35% rated their health as being fair, and 5% rated their health as being poor. When asked if their health had changed since caring for their grandchild, the majority of grandmothers (79%) responded that they had no change and that they were still the same health-wise. Eleven percent said their health was better since caring for their grandchild, while 10% said their health had gotten worse since their caregiving had begun (Table 2). When asked to indicate whether they were experiencing any physical problems or illnesses at the time that seriously affected their health, 45% of the grandmothers responded that they did have a problem or illness. Those illnesses cited were hypertension, heart disease, diabetes, asthma, arthritis, and cancer.

Grandchild Profile

Forty percent of the grandmothers reported having only one grandchild in their home at the time of data collection. The age of the youngest grandchild living with the grandmother participant ranged in age from 6 months to 15 years, with the mean age for the youngest grandchild being cared for being 5.24 years (SD = 3.30). Fifty-nine percent of the grandmothers stated that the youngest grandchild living with them was age 5 or younger. Thirty percent of the grandmothers responded that the youngest grandchild in their home had been with them since birth, whereas 53% stated that this was the first time the grandchild had lived with them. The length of time that the youngest grandchild had been living with the grandmother ranged from 6 months to 15 years (Table 3).

The majority of the grandmothers (66%) rated their grandchild as bang in excellent health. Twenty-six percent rated their grandchild's health as good, 7% rated the health as fair, and 1% rated the grandchild's health as being poor. When asked to identify any problems that the grandchildren may have had at their births, 37% of identified problems were drug-related (e.g., drug exposure and drug withdrawal).

How the Caregiving Began

Eighty percent of the grandmothers in this study cited drug use by the parent (e.g., parental drug abuse, parental incarceration, death caused by drug use) as the reason why the grandchild had been placed in their home. Non-drug related reasons for placement included parental mental illness, child abuse, and parental incarceration. For 54% of the grandmothers, caregiving of their grandchild began when social services (Department of Human Services) or a court action had placed the grandchild into their home. Twenty-seven percent of the grandmothers indicated that they volunteered to Kike over care for their grandchild, and 19% began caregiving because someone else in their immediate family asked them to care for the grandchild.

Grandmother Health and Grandchild Health Ratings

The majority (60%) of grandmothers in this study self-reported their health to be good or excellent. Grandmothers who rated their health as being fair or poor had significant correlations with three subscales of caregiver burden: poor financial status, negative family support, and worsening health since becoming a caregiver. Those grandmothers who indicated that they felt their health had suffered from caregiving rated the grandchild's health as lower (r = .28, p = .01). While the majority of grandchildren (66%) in this study were in excellent or good health, those grandmothers who reported having sicker grandchildren living with them in their home were more likely to have a low self-esteem rating (r = -25-,? = .01).

There was a strong relationship between older (60 years or older) grandmothers having grandchildren who had been born prematurely being placed in their homes (r = -.33, p = .001). These premature grandchildren were frequently rated by their grandmothers as having lower health ratings (r = 25,p = .01). The more visits to the physician by the grandchild, the more likely the grandmother was to rate her own stress level as being high (r = -.25, p = .01). These grandmothers also rated the grandchild's health as being lower (r = .28, p = .01), and indicated an increase in the frequency of grandchild hospitalization (r = 2\? = .01) (Table 4).

Table

TABLE 3GRANDCHILD PROFILE

TABLE 3

GRANDCHILD PROFILE

Table

TABLE 4GRANDCHILD HEALTH PROFILE

TABLE 4

GRANDCHILD HEALTH PROFILE

Social Support Concerns of the Grandmothers

The relationships of specific grandmother demographics to the five subscales of caregiver stress were evaluated using a Pearson correlation matrix. The correlations indicated that those grandmothers who reported not being married were more likely to perceive that they had less family support (r = -.25, p = .01) and poorer health (r = .42, p = .01) than those who were married. The more grandchildren in the home, the more negative the impact on the grandmothers' schedule and the higher their perception of lack of family support. Having a poor or low rating of physical health negatively impacted the grandmothers self-esteem rating (r = -.25, p = .01), perception of finances (r = .45, p = .001), and perceived lack of family support (r = .42, p = .001). In addition, caregiving had a negative impact on the grandmothers' day-to-day schedule.

Financial Concerns of the Grandmothers

This sample frequently identified financial concerns and the need for additional financial support as a stress and burden. Forty-eight percent of the grandmothers in this study did not receive state Department of Human Services caretaker/foster care payments or public assistance. For the 40% who reported that they did receive state Department of Human Services payments for providing care to their grandchild only did so if the grandchild had been placed by the Department of Human Services. Twenty-six percent of the grandmothers in this study responded that they were eligible for food stamps, and 20% received utility assistance with their gas, electric, and water bills. Of the grandchildren living in their grandmother's household, 61 % were receiving some kind of public assistance. The bulk of this assistance was in the form of having medical cards via the Medicaid system.

Almost 30% of the grandmothers in this study identified an income decrease by 10% or more in the past 12 months. Grandmothers who had such a decrease in income were more likely to rate their health as fair or poor and were more likely to respond that their health had gotten worse since caregiving began (r = -.26, p = .01). These women also rated their family support as low or lacking (r = .33, p = .001), and those grandmothers who had indicated that their health had gotten worse since caregiving were more likely to perceive that it had a greater negative impact upon their schedules (r= .33,/i = .001).

DISCUSSION

Findings suggest that the grandmothers' physical health and the rating of health influenced their responses to finances, perception of family support, and level of positive or negative impact on their schedule. Grandmothers who rated their health as excellent or good had lower levels of stress, more family support, rated their financial status as acceptable, and were generally more likely to rate their grandchild as in excellent or good health. Whereas, those grandmothers who rated their health as being fair or poor generally had been sick multiple times, had visited the physician's office frequently, rated their family support as low or lacking, indicated that their finances were poor and had a grandchild with fair or poor health. As a 70-yearold grandmother of four grandchildren stated:

It is impossible to do what the doctor tells me to do. I can't soak my feet and legs for those sores [diabetic ulcers]...! had to give the baby up to foster care and that has helped me a lot, but I'll have the others till forever - if I last that long.

Grandmothers who rated their grandchild's physical health to be fair or poor were more likely to respond that their own health had suffered since becoming a caregiver. The more often the grandchild was seen by the physician, was hospitalized, or used medications, the more likely the grandmothers rated their burden level as being high. This finding was supported by the correlation between the grandmothers' rating of the grandchildren's poor health and the rating of their own poor health.

Financial

An issue of concern for the grandmothers in this study was the financing of their parental role. The grandmothers from this study who responded that they had experienced a negative change in their finances or income level were more likely to have higher stress levels and to rate their health as being poor. The U.S. Census Bureau (2000) estimates that grandmothers who are raising their grandchildren are more likely to live in poverty than are grandmothers not raising grandchildren, with 57% being described as poor. For many of the women in this study, becoming a grandmother caregiver caused dramatic changes in their lives. As one 52-year-old grandmother wrote, on the additional comment section of the instrument, of her own mother (great-grandmother) who helps with the five grandchildren in the home:

The lawmakers have not recognized this new blended family, the laws are not for grandmothers. They take the "pension" into consideration to determine if one is qualified for food stamps. My mother, who is purchasing the food, has been denied food stamps, because "her" social security is "too high." She is doing everyone a favor by caring for these girls, doing their laundry, cooking for them, etc. Her pension has nothing what so ever to do with these children, this "Job" was dropped in our laps!

Support Groups

Another finding indicated that grandmothers who identified themselves as having young and/or sick grandchildren were more likely to be in a support group. A 59-year-old grandmother response to the group she belonged to was positive. She said, "I go to a support group because I need it. My health has gotten worse because of stress - I am trying to be a mother when I am a grandmother." Grandmothers who had experienced an urgent need within the past 6 months were more likely to be satisfied with the assistance received if they were older and in a support group. Thus, participation in support groups by this population seemed to be beneficial. However, it also raises the issue that the stress identified by grandmothers participating in support groups may be lower than those who are not. Therefore, findings in this study may be conservative estimates of the magnitude of burden in grandmother caregivers.

Marital status was another variable that had a strong effect on both grandmother health and perception of family support. Married grandmothers who viewed their spouse to be supportive were more likely to rate having more family support than grandmothers who were not married. Those grandmothers who were not married at the time of data collection generally had more negative responses to health and rated their family support as low or lacking. This finding was seen repeatedly in the literature where a lack of family support has been linked to caregiver burden (Davidhìzar et al., 2000; Dowdell, 2004; Dowdell & Sherwen, 1998; Kelley et al., 1997; Musil, 1998).

Limitations

Because of the exploratory nature of this investigation, grandmothers representing a multitude of grandchildren ages and reasons for placement were included in this sample. Qualitatively, the issues and concerns when caring for an adolescent grandchild are different from the demands caring for an infant or toddler grandchild. Also, many of these grandmothers participated in local, informal support groups; therefore, the stress levels may not be a true reflection of the grandmother caregiver population. Additionally, questions addressing the grandmother s financial status reflected the grandmother s perception because specific income level was not asked for.

CLINICAL IMPLICATIONS

This study identifies profile characteristics that "tip the balance" for positive and negative caregiver outcomes on grandmothers. Those grandmothers who had moderate to minimum caregiver burden rating perceived more family support and reported higher self-esteem and physical health ratings. Those grandmothers with moderate to severe caregiver burden ratings had higher stress levels, perceived less family support, more financial difficulty, and reported lower physical health ratings.

Health, emotional, and psychosocial support are possible for both grandmother and grandchild if emphasis is placed on evaluating both individuals' physical health. Physical health plays an important role in the well being of caregivers. Indicators of poor physical and mental health for both grandmother and grandchild need to be identified early and interventions planned to foster positive outcomes. When a client has been identified as a grandmother caregiver, or a pediatrie client has been identified as having a grandmother as the primary caregiver, detailed histories and physical assessments should be taken. Health care providers need to ask questions about both the grandmother's and grandchild's health status, previous problems or situations causing stress, participation in support groups, family or friend support for childcare issues, health care issues, transportation, and financial concerns. An economic needs assessment and referrals to appropriate agencies, in addition to finding a specific local support group, can be beneficial to these women and families.

Nurses are in an ideal position within the health care system to deliver such attention because nurses have access to both populations and an understanding of the special needs of both age groups. Additionally, nurses are excellent educators who have the ability to discuss childrearing and anticipatory guidance issues with caregivers who are once again caring for young children. Nurses, via a nursing assessment and health history, can detect health problems early, in addition to encouraging behaviors that will promote healthy lifestyles. Questions that can be incorporated into a nursing assessment should focus on both the grandchild and grandmother s present state of health. The grandmother should rate her own health and indicate why she chose the rating she did; list what factors influenced her response and indicate if her health changed in the past 6 months; and rate her grandchild's health as excellent, good, fair, or poor and indicate why she thinks that.

SUMMARY

Being a grandmother caregiver can be a very challenging role for women. The sense that they have contributed and helped their grandchild is a strong motivator in continuing to be a caregiver, regardless of the losses that have come with caring for the child. One grandmother in this study said, "Alicia has become a happy healthy little girl, she goes to day care and is loved by her teachers. She has lots of friends. Alicia was my gift from God...we are all that we have and we love each other." On the experience of being a grandmother caregiver, one 48-year-old grandmother said it best, "I could write a book!"

REFERENCES

  • Casper, L.M., 8c Bryson, K.R. (1998). Coresident grandparents and their grandchildren: Grandparent maintained families (Population Division Working Paper No. 26). Washington, DC: U.S. Census Bureau.
  • Chou, K-R. (2000). Caregiver burden: A concept analysis. Journal of Pediatrie Nursing, 75(6), 398-407.
  • Davidhizar, R., Bechtel, G.A., 8c Woodring, B.C. (2000). The changing role of grandparenthood. Journal of Gerontological Nursing, 26(1), 24-29.
  • Dowdell, E.B. (2004). Grandmother caregivers and caregiver burden. The American Journal of Maternal/Child Nursing, 29(5), 299-304.
  • Dowdell, E.B., 8c Sherwen, L.N. (1998). Grandmothers who raise grandchildren: A cross generational challenge to caregivers. Journal of Gerontological Nursing, 24(5), 8-13.
  • Given, C.W, Given, B., Stommel, M., Collins, C, King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15, 271-283.
  • Hunt, C.K. (2003). Concepts in caregiver research. Image: Journal of Nursing Scholarship, 55(1), 27-32.
  • Kelley, SJ., Yorker, B.C., 8c Whitfey, D. (1997). To grandmother's house we go... and stay. Children raised in intergenerational families. Journal of Gerontological Nursing, 23(9), 12-20.
  • Meyer, L.L., Kropf, N.P., Oc Robinson, M. (2002). Grandparents raising grandchildren: Case management in a rural setting. Journal of Human Behavior in the Social Environment, 5(1), 53-71.
  • Minkler, M., Fuller-Thompson, E., Miller, D., & Driver, D. (1997). Depression in grandparents raising grandchildren: Results of a national longitudinal study. Archives of Family Medicine, 6(5), 445-452.
  • Musil, CM. (1998). Health, stress, coping, and social support in grandmother caregivers. Health Care for Women International, 19(5), 441-455.
  • U.S. Census Bureau. (2000). Census of population: Social and economic characteristics. Washington, DC: U.S. Government Printing Office.
  • U.S. Department of Health and Human Services. (2000). Healthy people 2010: Understanding and improving health. Washington, DC: Government Printing Office.

TABLE 1

GRANDMOTHER PROFILE

TABLE 2

GRANDMOTHER HEALTH PROFILE

TABLE 3

GRANDCHILD PROFILE

TABLE 4

GRANDCHILD HEALTH PROFILE

10.3928/0098-9134-20050601-09

Sign up to receive

Journal E-contents