Caregivers Online

The internet is an integral part of the lives of people who care for loved ones.

Thirty percent of U.S. adults help a loved one with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing. Most are caring for an adult, such as a parent or spouse, but a small group cares for a child living with a disability or long-term health issue.

Eight in ten caregivers (79%) have access to the internet. Of those, 88% look online for health information, outpacing other internet users on every health topic included in our survey, from looking up certain treatments to hospital ratings to end-of-life decisions.

Caregivers are significantly more likely than other internet users to say that their last search for health information was on behalf of someone else: 67% vs. 54%. Just 29% of online caregivers say their last search was solely focused on their own health or medical situation, compared with 40% of non-caregivers who go online for health information.

Caregiving is associated with being online and with online e-health behaviors.

Caregivers are somewhat better educated and more likely to be middle-aged (ages 50-64) than are non-caregivers. However, statistical analysis shows that when comparing people of similar age, education and other demographic characteristics, being a caregiver in and of itself is associated with a greater likelihood of using the internet, particularly to get and share health information.

Caregivers are highly social, both online and offline.

Caregivers are more likely than other internet users to take advantage of social tools related to health:

• 44% of online caregivers have read someone else’s personal health story online, compared with 29% of non-caregivers.
• 28% of online caregivers who use sites like Facebook have followed their friends’ personal health experiences or health updates, compared with 21% of non-caregivers who use such sites.
• 26% of online caregivers have looked online for someone with similar health concerns, compared with 15% of non-caregivers.

Caregivers are also more likely than other people to tap into their offline social networks when they need health information, care, or support. The last time they had a health issue:

• 70% of caregivers say they turned to friends and family members for information, care, or support, compared with 47% of non-caregivers who did the same.
• 28% of caregivers say they turned to others who have the same health condition, compared with 17% of non-caregivers who did so, either online or offline.

Caregivers are active health care consumers.

Caregivers are more likely than other internet users to read online reviews of drugs, clinicians, and medical facilities:

• 38% of online caregivers have consulted online reviews of particular drugs or medical treatments, compared with 18% of non-caregivers.
• 21% of online caregivers have consulted online rankings or reviews of doctors or other providers, compared with 13% of non-caregivers.
• 20% of online caregivers have consulted online rankings or reviews of hospitals or other medical facilities, compared with 12% of non-caregivers.

Statistical analysis shows that being a caregiver has a significant association with an internet user’s likelihood to consult such reviews. It is not just that caregivers are more likely to be older, more highly educated, and living with chronic conditions (groups likely to do this type of research). Being a caregiver is independently associated with higher levels of a variety of health information-seeking behaviors.

About this Study

This report is the result of collaboration between the Pew Internet Project and the California HealthCare Foundation.

The Pew Internet & American Life Project is an initiative of the Pew Research Center, a nonprofit “fact tank” that provides information on the issues, attitudes and trends shaping America and the world. The Project is nonpartisan and takes no position on policy issues. Support is provided by The Pew Charitable Trusts.

The California HealthCare Foundation is an independent philanthropy committed to improving the way health care is delivered and financed in California.

All quantitative, numerical data is based on national telephone surveys conducted by Princeton Survey Research Associates International (PSRAI).

PSRAI is an independent firm dedicated to high-quality research providing reliable, valid results for clients in the United States and around the world.

All quotes from caregivers were collected from members of the National Organization of Rare Disorders (NORD).

NORD is a nonprofit organization dedicated to improving the lives of all patients and families affected by rare diseases through advocacy, education, research, and patient services. NORD sent invitations to a sample of their membership and many caregivers responded by writing essays about how they help their loved ones live with rare conditions.

Additional thanks to our peer reviewers.

Kristen Purcell, associate director for research at the Pew Internet Project, provided statistical analysis related to the strength of the “caregiver difference” on online behavior.

MaryAnne Sterling, healthcare consultant, reviewed the draft report and provided insights based on her expertise as a policy expert and the sole caregiver for her elderly parents.

Caregivers in the U.S.

Thirty percent of U.S. adults say they help a loved one with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing.

The majority of caregivers say they care for an adult, but about one in five caregivers has a child with significant disabilities or health issues. The population breaks down as follows:

• 24% of U.S. adults care for an adult
• 3% of U.S. adults care for a child with significant health issues
• 3% of U.S. adults care for both an adult and a child
• 70% of U.S. adults do not currently provide care to a loved one

While we did not ask caregivers directly about the impact of the internet on their delivery of care to their loved ones, there are patterns in the data indicating that the impact is significant. Caregivers make extensive use of the internet for health information, over and above what they may do for their own health situation.

The report is primarily based on a national telephone survey conducted in September 2010. Although the data set is two years old, we believe it is still relevant since many of the trends we describe change very slowly, such as the percentage of adults who care for loved ones and the use of the internet to gather health information, neither of which have changed appreciably since the Pew Internet Project began tracking those activities in 2002. In addition, the demographic data we collected matches the findings of a more recent survey by the AARP Public Policy Institute.² Where possible, we have used 2012 survey data by the Pew Internet Project to update more fast-moving trends, such as the use of social networking sites.

Who are the caregivers?

Women are slightly more likely than men to be caring for a loved one, as are adults ages 50-64, compared with other age groups. Caregivers are more likely than other people to report that they themselves are living with a disability, 34% compared with 24%.

The call to aid a loved one cuts across all other boundaries: those who work full-time and those who are retired; those who have children at home and those who do not; those who are married and those who are single; those who enjoy a high income and those who do not. All of these groups are equally likely to say they are caring for an adult or a child who needs their help.

In addition to being likely to have recently experienced a personal medical emergency, caregivers are more likely than other people to report that someone close to them has faced a serious medical crisis in the last 12 months: 44%, compared with 21% of non-caregivers. Based on this data, caregivers seem likely to be people who are familiar with the route to their local emergency room.

Caregivers are also likely to know their way around technology:

Statistical analysis shows that when all other demographic factors are controlled, being a caregiver in and of itself is independently associated with someone’s likelihood to use the internet.

Caregivers are voracious health information consumers

Fully 79% of caregivers have access to the internet. Of those, 88% look online for health information. They outpace other internet users when it comes to researching every health topic included in Pew Internet’s surveys, often by double-digit margins, as seen in the table below.

In testing the statistical significance of the relationship among demographic factors and various topics, we found that being a caregiver, having attended college, living with a chronic condition, and having experienced a recent health change or health crisis oneself are all associated with a greater likelihood of researching health information online.

When other demographic factors are held constant, including one’s own health status, being a caregiver is correlated with an internet user’s likelihood to say they have looked online for information related to memory loss, dementia, or Alzheimer’s disease as well as information about long-term care for an elderly or disabled person. Other categories with similar, but somewhat weaker correlations include research about information about a specific disease or medical problem, a certain treatment or procedure, and drug safety.

Caregivers provide second-degree access to health information

Older adults and people living with disability are among the least likely groups to have internet access, yet among the most likely to need up-to-date health information. About half of adults who are senior citizens and half who live with disabilities use the internet, compared with 82% of all adults.³

However, a group of people is poised to act: their loved ones.

Caregivers are significantly more likely than other internet users to say that their last search for health information was on behalf of someone else: 67% vs. 54%. Just 29% of online caregivers say their last search was solely focused on their own health or medical situation, compared with 40% of non-caregivers who go online for health information.

Illness has a significant impact on families

In the caregiver definition Pew Internet uses in our national surveys, we include unpaid care to a child for an ongoing or serious short-term condition, emotional or behavioral problems, or developmental problems.

As part of this research, we asked members of the National Organization for Rare Disorders (NORD) to write short essays about their use of the internet in caring for themselves or for their loved ones. One mother described how she stepped up to the challenge:

When my child was diagnosed, I left everything and turned to research this disease. I promised myself that my life would be driven by efforts to make my child’s life normal and to give my child tools for handling these handicaps in a positive way. So far, so good. He has the tools, he lives life to the fullest. He is married and totally independent of me. Though he lives hundreds of miles away, he knows I am standing behind him, and when he needs help, I am there in a nano-second.

This same mom wrote about finding untapped resources within herself and within her family:

We had to keep a façade of strength those first years and became self-sufficient and found happiness around us. In fact the fortress we had erected around us regarding our son’s disease helped us and, more importantly, him, lead a normal life. The façade of well-being seeped into us.

It is a drama that was reflected in many of the other essays:  people surround an ill loved one with support—physical, emotional, and now virtual.

Unfortunately many caregivers’ stories are not so happy. As one caregiver wrote, “I have spent many lonely desperate nights online looking for more information that might create a change for us.” Caregiving can be a long and unforgiving journey, sometimes ending only with the loved one’s death. 

Caregivers like me

Our national phone survey found that 26% of internet users caring for a loved one say they have looked online for someone with health concerns similar to theirs. By comparison, 15% of internet users who are not currently caring for a loved one have looked online for someone like themselves. 

[his condition]

The social life of health information

Caregivers are more likely than other internet users to take advantage of social tools related to health. Fully 68% of online caregivers have done at least one of the activities listed in the table below, compared with 50% of non-caregivers:

Social networking sites like Facebook continue to grow in popularity, fast becoming a meeting place for a wide range of communities, including health-related ones. A February 2012 Pew Internet survey found that 66% of adult internet users have a profile on sites like Facebook, LinkedIn, or Google+. Caregivers are more likely than other internet users to say they follow their friends’ personal health experiences and to get health information on these sites.

Caregivers are active health care consumers

Caregivers are more likely than other internet users to have consulted—and written—reviews of clinicians, medical facilities, and drugs online. Indeed, statistical analysis shows that when other demographic factors are controlled, being a caregiver in and of itself is independently associated with an internet user’s likelihood to consult all three types of online reviews. Other factors contributing to an internet user’s likelihood to do this type of research include: having attended college, living with a chronic condition, being white, having an annual household income of $50,000 or higher, or having recently gone through a personal health change.

In the moment of need

Most people say that the last time they had a health issue, they got information, care, or support from a doctor or other health professional, either online or offline. Fully 78% of caregivers say that, compared with 66% of non-caregivers.

What is more striking is how caregivers tap into their personal networks: 70% of caregivers say that they turned to their friends and family members, either online or offline. By contrast, 47% of non-caregivers did so.

Twenty-eight percent of caregivers say they turned to others who have the same health condition the last time they had an issue, compared with 17% of non-caregivers who did so, either online or offline.

Different sources for different kinds of health information

When asked who is more helpful when they need an accurate medical diagnosis or information about prescription drugs, the overwhelming majority of U.S. adults answer “health professionals like doctors and nurses,” rather than fellow patients, family, and friends. Caregivers echo these sentiments.

However, when it comes to emotional support in dealing with a health issue, 59% of adults say that their friends, family members, and peers are more helpful than clinicians. Caregivers are especially likely to say this—67% agree.

This split view—that clinicians are more helpful on technical or medical issues while other sources are more helpful on practical or emotional issues—is particularly pronounced among caregivers. In fact, the one question which divided the general population evenly between professionals and peers—practical advice for coping with day-to-day health situations— elicits a decisive response from caregivers. Fully 53% of caregivers say fellow patients, friends, and family members are more helpful when it comes to practical tips, compared with 46% of all adults.

Help vs. harm online

Most people are more likely to report that the internet has been helpful, rather than harmful, when it comes to their health or the health of people they know. Caregivers are no exception.

By comparison, 30% of all adults report that they or someone they know has been helped by following medical advice or health information found online. And just 3% report harm coming to them or someone they know because of online advice.

Statistical analysis shows that when other demographic factors are controlled, being a caregiver in and of itself has an independent association with the likelihood that someone will say that the internet was helpful. Other factors associated with finding the internet helpful include: having recently gone through a personal health crisis, having attended college, having someone close to you go through a recent health crisis, a recent change in one’s personal health status, being white, and living in a household with an annual income of $50,000 or more.

About this Study

All numerical results in this report are based on data from telephone interviews conducted by Princeton Survey Research Associates International between August 9 and September 13, 2010, among a sample of 3,001 adults, age 18 and older.  Interviews were conducted in English and Spanish.  For results based on the total sample, one can say with 95% confidence that the error attributable to sampling is plus or minus 2.5 percentage points.  For results based on internet users (n=2,065), the margin of sampling error is plus or minus 2.9 percentage points. For results based on caregivers (n=860), the margin of sampling error is plus or minus 3.9 percentage points. In addition to sampling error, question wording and practical difficulties in conducting telephone surveys may introduce some error or bias into the findings of opinion polls.

A combination of landline and cellular random digit dial (RDD) samples was used to represent all adults in the continental United States who have access to either a landline or cellular telephone. Both samples were provided by Survey Sampling International, LLC (SSI) according to PSRAI specifications.  The landline sample for this survey was designed to generalize to the U.S. adult population and to oversample African Americans and Hispanics. To achieve these objectives in a cost effective manner, the design uses standard list-assisted random digit dialing (RDD) methodology, but telephone numbers are drawn disproportionately from telephone exchanges with higher than average density of African American and/or Hispanic households. The cellular sample was not list-assisted, but was drawn through a systematic sampling from dedicated wireless 100-blocks and shared service 100-blocks with no directory-listed landline numbers.

New sample was released daily and was kept in the field for at least five days. The sample was released in replicates, which are representative subsamples of the larger population. This ensures that complete call procedures were followed for the entire sample.  At least 7 attempts were made to complete an interview at a sampled telephone number. The calls were staggered over times of day and days of the week to maximize the chances of making contact with a potential respondent. Each number received at least one daytime call in an attempt to find someone available. For the landline sample, half of the time interviewers first asked to speak with the youngest adult male currently at home. If no male was at home at the time of the call, interviewers asked to speak with the youngest adult female. For the other half of the contacts interviewers first asked to speak with the youngest adult female currently at home. If no female was available, interviewers asked to speak with the youngest adult male at home. For the cellular sample, interviews were conducted with the person who answered the phone. Interviewers verified that the person was an adult and in a safe place before administering the survey. Cellular sample respondents were offered a post-paid cash incentive for their participation. All interviews completed on any given day were considered to be the final sample for that day.

Disproportionate sampling and non-response in telephone interviews can produce biases in survey-derived estimates. The dataset was weighted in two stages.  The first stage of weighting corrected for the disproportionate landline sample design and also accounted for the overlapping landline and cellular sample frames as well as different probabilities of selection associated with the number of adults in the household. The second stage of weighting matched overall sample demographics to population parameters. The demographic weighting parameters are derived from a special analysis of the most recently available Census Bureau’s March 2009 Annual Social and Economic Supplement. This analysis produces population parameters for the demographic characteristics of adults age 18 or older. These parameters are then compared with the sample characteristics to construct sample weights. The weights are derived using an iterative technique that simultaneously balances the distribution of all weighting parameters. Following is the full disposition of all sampled telephone numbers:

The disposition reports all of the sampled telephone numbers ever dialed from the original telephone number samples. The response rate estimates the fraction of all eligible respondents in the sample that were ultimately interviewed. At PSRAI it is calculated by taking the product of three component rates:

• Contact rate – the proportion of working numbers where a request for interview was made
• Cooperation rate – the proportion of contacted numbers where a consent for interview was at least initially obtained, versus those refused
• Completion rate – the proportion of initially cooperating and eligible interviews that were completed

Thus the response rate for the landline sample was 13.6 percent. The response rate for the cellular sample was 17.0 percent.