The Grandmother's Curse
Gerontologist Gillian Ice explores the mental and physical stress of caring for children orphaned by HIV/AIDS
June 17, 2010
Kenya hasn’t escaped the ravages of HIV/AIDS. The country’s middle generation is being wiped out, leaving behind more than one million orphaned children.
The vast majority of these orphans are taken in by their grandparents, who often have just lost their main source of economic support along with their adult children. The resulting physical, emotional, and financial burden on the elderly is so pervasive that the pandemic has been nicknamed the “grandmother’s curse.”
Since 2002, Ohio University gerontologist Gillian Ice has studied the mental and physical stress that caregiving places on Kenyan grandparents. Her latest findings, based on a five-year study of more than 600 elders, could improve intervention strategies and provide insight into human aging, not only in Africa but around the world.
Ice conducts her research in Nyanza Province in the west of Kenya, largely populated by the agricultural Luo people. With 30 percent to 39 percent of adults infected, the area has one of the highest HIV/AIDS rates in Africa.
“The first time I went there, there was a lady about 96 years old who was taking care of eight orphans. I wondered how she even walked,” says Ice, an associate professor of social medicine in the College of Osteopathic Medicine.
That 96-year-old woman was not an anomaly. Ice and her research team soon found other elders in similar situations. Grace lives with seven grandchildren in a one-room, grass-thatched hut that leaks during the rainy season. Although the kids attend school and assist with household chores, they never know for sure where the next meal will come from. Leopadus, 84, cares for 13 orphaned grandchildren in a 40-year-old hut with large structural cracks. He hopes that one of his grandchildren will find employment soon so he or she can take care of the siblings when he’s gone.
Grace and Leopadus are just two of many elders involved in Ice’s Kenyan Grandparents Study, which followed 611 people in 18 villages from 2005 to 2009. All were over the age of 60 and had one or more orphaned grandchildren. Half were the primary providers for at least one grandchild, and half were not.
Ice and her team assessed the grandparents’ physical and mental health as well as their perceptions of their health. The team tested for clinical signs of chronic stress such as high body mass index (BMI), blood pressure, and blood sugar. They also interviewed the elders in their native language using a questionnaire that asked about their general mental health, socioeconomic status, pain, energy levels, and the burdens they felt when performing various physical and social activities.
When Ice conducted a pilot study in 2002 and a larger follow-up study in 2003, she found that caregivers had poorer health than non-caregivers, and that men and women were affected differently. This supported common beliefs that caregiving stress was wearing down the elderly, and that as secondary citizens in a patriarchal society, women were bearing the brunt of it.
So Ice was surprised when the new study found that caregiving did not affect the grandparents’ physical health, although it still tended to lower their mental health and perceived health.
“We were really puzzled,” says Ice, whose research has been funded by the National Science Foundation. “When I present these results, no one can quite believe it. The results are so unexpected.”
Those who have been doing similar epidemiological work in places such as Thailand, Tanzania, and Brazil are less surprised by her findings, she says. Researchers there are learning that elders are more resilient than people give them credit for.
Part of it might be acclimation, says Ice. Some caregivers are stressed when they first take over child care but adjust over time. Some get relief when older grandchildren help with the younger ones, or have fewer mouths to feed when their adult children pass away. Others may welcome the help with physically demanding chores, such as collecting firewood, fetching water, cooking, and cleaning. Ice wonders if Luo elders may also compensate for their burdens by seeking support in social groups, leasing land, or taking advantage of charities. For still others, caregiving may simply pale in comparison to other stresses.
One reason these kinds of findings haven’t surfaced earlier is that most of the work done on elderly caregivers has been qualitative, focusing on individual stories of hardship instead of conducting controlled studies of large groups over many years, says Ice, who has published her work in journals such as the Journal of Cross Cultural Gerontology and Research on Aging.
In addition, a lot of the research has taken place in the United States and other developed nations, where different cultures can have different effects on stress levels. In the United States, for instance, where HIV/AIDS rates are comparatively low, grandparents often become caregivers because their adult children are in prison or struggling with drug addiction.
“The parents are still alive, and might be adding stress by coming in and out of their lives and dealing with custody issues,” says Ice.
In Kenya, many elders live in communities where they already share in caregiving, whereas older people in the United States are more likely to be isolated and unprepared to care for others.
As for why the new study’s results contradict the earlier ones, Ice points to several factors. In the pilot studies, the research team relied on the subjects’ own self-assessment of whether they were the primary caregivers. In the later study, the team determined this through a detailed household demography. In addition, community changes may have impacted the nature of caregiver stress, she says. In 2005, primary school became free, and there appeared to be differences in agricultural production over time. The research team also focused on a small area during the first two years but later worked with a much greater number of communities.
For future studies, Ice is looking into refining the definition of “caregiver” and asking more detailed questions about the division of labor in households, down to who dresses the children and offers emotional support.
What she finds—and what she and others have already found—could influence policy decisions in Kenya and other nations hit hard by HIV/AIDS, by helping organizations send the right resources to the right people.
“We are just beginning to understand the impact,” says Ice. The good news is that elderly caregivers may not be in as dire straits as people suspected. “People were really worried about them,” she says.
That’s because “everyone assumed elders didn’t have the capacity” to take on child-rearing, she says. Now, she wants to uncover the “resilience factors” that allow some elders to adapt to caretaking more easily than others.
“It probably involves the resources they have—such as the social groups, the very strong units of support women have for finances and food—and the way they perceive the world. Some find great satisfaction in caretaking,” she says. She also plans to examine whether certain demographic structures help households cope better.
A gerontologist at heart, Ice is broadening her research into aging and adaptability around the world. “These people are survivors. What enables them to survive?” she asks. “Is the set of characteristics in Kenya similar to the United States?”
While she looks for answers, Ice is witness to the personal journeys of the students she takes to Nyanza Province. “You see the medical students experience medicine practiced a different way. You see all the students adjust to seeing so many people who are ill,” she says. “It’s a struggle I go through every time I go.”
To give back to the community, Ice started the Kenyan Children’s Fund. Her students raise money to buy school uniforms for Nyanza’s youth.
Despite the difficulties, she says, “I really enjoy being there. It’s great to get to know the country and the people.”
She’s comfortable enough to bring her children now. “Before I had my son, the women were suspicious of me,” she says. It wasn’t until she had her four-year-old and 19-month-old in tow that the Luo grandmothers truly trusted her.
Though separated by culture, geography, and a generation, perhaps they respected a fellow caregiver.
By Stephanie Dutchen
Click here to view a PDF of the story