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Health Decision Makers




      Kathleen Hoffman, PhD, MPH
           Health Communication
http://www.hsph.harvard.edu/women-and-
health-initiative
Caregivers are defined in two ways

1) Narrowly (National Family Caregivers Association)

People who care for loved ones with chronic
conditions, disabilities, disease, or the frailties
of old age.
This includes parents of children with special needs.
http://caregiveraction.org/about

2) Broadly (Merriam-Webster Dictionary)

a person who provides direct care (as for children,
elderly people, or the chronically ill)
http://www.merriam-webster.com/dictionary/
caregiver
How Many Mothers are there in the
US?

• As of 2008 the estimated number of
  mothers of children ages 0 to 18 was 85.4
  million.

• Around 5 million of these women were
  stay at home moms.

• 61 percent of mothers were in the
  workforce in 2008.
Deciding                                                 Follow-up Care
   Physician



                                     Taking to
                                   Appointments
85% of Moms Decide on Children’s                           79% assure Children
Physician                                                  Receive follow-up care




                             84% of Moms take their
                             Children to MD appointments
Population
              More than 66 million
              Americans (28.5% of
              the adult population)
             provide unpaid care to
             an elderly or disabled
               person 18 years or
                      older

             Caregivers

                                   Sixty-six
                                  percent of
                                  caregivers
                                 are women.
85.4 million American women are mothers

43.56 million American women are family caregivers

20 million are doing both jobs


Of the 155.6 million women in the US as of the 2010
                                                   Census

   A guesstimate of 2/3 or around 100 million women
                               are caregivers!
81% wish there
                                    were more hours in
                                    the day to get
                                    things done



Two-thirds reported that
they have more on their
minds than they did five
years ago                             73% say they juggle
      (65%)                            a lot of thoughts
                     84% say they
                  juggle a lot of tasks
Women caregivers, compared with
  women who are not caregivers,
  are less likely to:
    • get medical care
    • fill a prescription (because
       of the cost)
   • get a mammogram
     • get enough sleep
     • cook meals
     • doing physical activity
(http://womenshealth.gov/publications/our-publications/fact-sheet/caregiver-
stress.cfm
Information overload… 80% of household
buying decisions…most health decisions… little
time for messages… poorer health..decreasing
attention span… multi-tasking…
Social   Media
67% of moms used the Internet
  and watched TV concurrently



While using social media ½ of the moms
are talking to someone else



   1 in 4 use tablet while watching
   TV several times a week
Nielson research has found:

At least half of moms use social
media via mobile devices
compared to 37 percent of the
online population.

Overall 54 percent of moms own
smartphones (among US mobile
subscribers), keeping them
connected with family and
friends.
.
Boomer Caregivers   Moms

      Facebook        Facebook

       Amazon          Blogger

      Wal-Mart             Twitter
      Federated
        Media          Myspace
      Publishing
       LinkedIn        Pinterest
If Targeting
Mothers Target Their
Children’s Needs



      For Sandwiched> Target Both



                       If Targeting Caregivers
                       of
                       Elders, Target Elders’
                       Needs Too!
Ask Women What They Need


Accommodate time constraints and
attention demands


Engage Influencers



Help Women Support Each Other


Be Shareworthy
Focus Groups

 Surveys

 Chats and Forums

Previous Research
1) perceived degree of seriousness

1) mother's degree of fear of the child's
   condition

1) attitude of the health care provider

1) previous experience with the situation

1) social support for the mother


  Gross, G Howard, M. (2001). Public Health Nurs. 18(3)
  157-68.
A review of 149 studies on parents making child
health decisions identified the following areas of
support needs:
    1) Information-including suggestions about
the content, delivery, source and timing

   2)Talking to others including concerns about
pressure from others

3) Feeling a sense of control over the process
or service

  Jackson, C, Cheater, F., & Reid,I. Health Expectations (2008).
  11(3), 232-251.
• Have a presence where women already
  congregate

   Social Media, including making your
  content available on mobile devices

   Real-time
Influencers


Value                  Experts



         Credibility
Relationships

                                               Provide calendar
24/7 forum for                                 and connections
 discussion                                    to organize help


                                 Support
            Provide useful       through
               information    respite, meet-
            based on real-        ups or
             life questions      activities
MUST BE CREDIBLE

 MUST BE CONSISTENT

 MUST BE EVER-PRESENT

MUST BE EASY TO OBTAIN
• #BCSM
Photo sharing opportunities

 Calendars

 Support

Information
“There are four kinds of people in this
world:

those who have been caregivers,

those who currently are caregivers,

those who will be caregivers, and

those who will need caregivers.”

                          ~Rosalyn Carter
Webinar: January 11, 2012 Women and Health: Reaching Health Decision Makers

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Webinar: January 11, 2012 Women and Health: Reaching Health Decision Makers

  • 1. Health Decision Makers Kathleen Hoffman, PhD, MPH Health Communication
  • 2.
  • 4.
  • 5. Caregivers are defined in two ways 1) Narrowly (National Family Caregivers Association) People who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. This includes parents of children with special needs. http://caregiveraction.org/about 2) Broadly (Merriam-Webster Dictionary) a person who provides direct care (as for children, elderly people, or the chronically ill) http://www.merriam-webster.com/dictionary/ caregiver
  • 6. How Many Mothers are there in the US? • As of 2008 the estimated number of mothers of children ages 0 to 18 was 85.4 million. • Around 5 million of these women were stay at home moms. • 61 percent of mothers were in the workforce in 2008.
  • 7. Deciding Follow-up Care Physician Taking to Appointments 85% of Moms Decide on Children’s 79% assure Children Physician Receive follow-up care 84% of Moms take their Children to MD appointments
  • 8. Population More than 66 million Americans (28.5% of the adult population) provide unpaid care to an elderly or disabled person 18 years or older Caregivers Sixty-six percent of caregivers are women.
  • 9. 85.4 million American women are mothers 43.56 million American women are family caregivers 20 million are doing both jobs Of the 155.6 million women in the US as of the 2010 Census A guesstimate of 2/3 or around 100 million women are caregivers!
  • 10. 81% wish there were more hours in the day to get things done Two-thirds reported that they have more on their minds than they did five years ago 73% say they juggle (65%) a lot of thoughts 84% say they juggle a lot of tasks
  • 11. Women caregivers, compared with women who are not caregivers, are less likely to: • get medical care • fill a prescription (because of the cost) • get a mammogram • get enough sleep • cook meals • doing physical activity (http://womenshealth.gov/publications/our-publications/fact-sheet/caregiver- stress.cfm
  • 12. Information overload… 80% of household buying decisions…most health decisions… little time for messages… poorer health..decreasing attention span… multi-tasking…
  • 13. Social Media
  • 14.
  • 15. 67% of moms used the Internet and watched TV concurrently While using social media ½ of the moms are talking to someone else 1 in 4 use tablet while watching TV several times a week
  • 16. Nielson research has found: At least half of moms use social media via mobile devices compared to 37 percent of the online population. Overall 54 percent of moms own smartphones (among US mobile subscribers), keeping them connected with family and friends.
  • 17.
  • 18. .
  • 19. Boomer Caregivers Moms Facebook Facebook Amazon Blogger Wal-Mart Twitter Federated Media Myspace Publishing LinkedIn Pinterest
  • 20. If Targeting Mothers Target Their Children’s Needs For Sandwiched> Target Both If Targeting Caregivers of Elders, Target Elders’ Needs Too!
  • 21. Ask Women What They Need Accommodate time constraints and attention demands Engage Influencers Help Women Support Each Other Be Shareworthy
  • 22. Focus Groups Surveys Chats and Forums Previous Research
  • 23. 1) perceived degree of seriousness 1) mother's degree of fear of the child's condition 1) attitude of the health care provider 1) previous experience with the situation 1) social support for the mother Gross, G Howard, M. (2001). Public Health Nurs. 18(3) 157-68.
  • 24. A review of 149 studies on parents making child health decisions identified the following areas of support needs: 1) Information-including suggestions about the content, delivery, source and timing 2)Talking to others including concerns about pressure from others 3) Feeling a sense of control over the process or service Jackson, C, Cheater, F., & Reid,I. Health Expectations (2008). 11(3), 232-251.
  • 25. • Have a presence where women already congregate  Social Media, including making your content available on mobile devices  Real-time
  • 26.
  • 27. Influencers Value Experts Credibility
  • 28. Relationships Provide calendar 24/7 forum for and connections discussion to organize help Support Provide useful through information respite, meet- based on real- ups or life questions activities
  • 29. MUST BE CREDIBLE MUST BE CONSISTENT MUST BE EVER-PRESENT MUST BE EASY TO OBTAIN
  • 31.
  • 32.
  • 33.
  • 34. Photo sharing opportunities Calendars Support Information
  • 35.
  • 36. “There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.” ~Rosalyn Carter

Notas del editor

  1. Welcome to this webinar titled Women and Health: Finding a better way to reach health decision makers. I’m Dr. Kathleen Hoffman. My area of expertise is health communications and I’m happy to welcome you to my first webinar.
  2. If you notice I’m using the phrase Women and health. This is a new way of bringing to bear the importance of women in health. Women have a huge place in the health of society…Yet it is very difficult to reach this group, maintain loyalty and engagement. This webinar is meant to highlight why it is essential to reach women with health care messaging, why it is difficult to reach them and how you can more effectively engage women in your health communication efforts.
  3. Why it is essential to reach women?One of the most important things to do is understand why we need to change our approach to women. When we talk about women’s health, we look at women in a passive frame. Using the phrase Women and Health reframes our approach because it recognizes the active role of women in health. “Women and Health” recognizes the roles of women in the health system, from informal providers of care to primary decision makers about health in their families. It also acknowledges the worldwide increase in numbers of women in medicine and as health professionals. This is part of an initiative highlighted by Harvard’s School of Public Health Dean Dr. Julio Frank. What I find interesting about this document
  4. Is that if you think about it, in the US informal providers & the primary decision makers in health care are what we call caregivers…Women do the majority of the health care giving in this society.
  5. Let’s get our heads around the word caregiver. There is currently a caregiver definition that is part of the policy discussion and that is the narrow definition of family caregiver. It states that caregivers are people who care for loved ones with chronic conditions, disabiliities, or frailties of old age. They also include parent of children with special needs. Although I appreciate this definition, I feel that when we are talking about women and health we need to use the broader definition: a caregiver is a person who provides direct care (as for children, elderly people or the chronically ill.) This definition includes mothers. I will be presenting research on both of these groups, and when talking about the sandwiched generation, many women fall into both groups.
  6. There are 155.6 million women in the US as of the 2010 Census. There are 74.5 million children under 18 in the US.How many mothers are there in the US?As of 2008 the estimated number of mothers of children was 85.4 millionAround 5 million of these women were stay at home moms.61 percent of mothers were in the workforce in 2008
  7. Research shows that mothers are the primary decision makers of the family and primary health decision makersMore than eight out of 10mothers/ say they take on cheifresponsblty for choosngtherchldren’s doctors (85%),Mothers take them to appiontments (84%), and ensurne that their childrenreceve follow-up care (79%) . as the prmarycoordnators of health care for therchldren, many workng mothers (48%) must take tme off when therchldren get sck . however, on top of shoulderngprmaryresponsblty for carng for sckchldren, about half (47%) ofwomen who don’t have chld care alternatvesand lose pay when they stay home to care for a sckchld .
  8. As I said before, the data on caregivers of the elderly or disabled are separate from that of mothers. So According to the National Alliance for Caregiving 2009 executive summary More than 66 million Americans (28.5% of the adult populatio)n, provide unpaid care to an elderly or disabled person. 66% of these caregivers are women.Altogether, informal caregivers provide 80 percent of the long-term care in the United States.In the US, the monetary value of services caregivers provide for free, caring for older adults, is about $375 billion per year. That figure exceeded the total 2007 Medicaid expenditures( of $311 billio)n and approached the total expenditures on Medicare ($432 billion).  $375 billion is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).
  9. So let’s get our head around these numbers: According to the Monthly Labor Review September 2006 article by Pierret, the estimated number of women in the sandwiched generation is 9% Or approximately 20 miilion women 85.4 millon Americans are mothers + 43.56 miillion family caregivers=129 million There are approximately 20 million women in the sandwiched generation So we can estimate that around 100 million American women are caregivers..
  10. Why is it difficult to reach women with health care messages?In a study of mother caregivers conducted by BabyCenterMoms.comthere are some interesting findings“72% of mothers believe they are overscheduled.”“Working moms report having only 54 minutes of personal time a day.“Women are living the 38 hour day”So these are people with little time to listen to messages.
  11. In addition, Caregiving impacts women’s healthWomen caregivers, compared with women who aren’t caregivers are less liket to get medical care, fill precriptions for themselves, get mammograms, get enough sleep, or get physical exercise
  12. Multi-minding is a cultural phenomenon that is here to stay. ..today’s careagivers suffers from information overload, But studies also show that most women feel marketers and health communicators are ignoring their needs.
  13. How do we reach women?Reach them where they are now…their channelsCaregivers are using social media more and the sandwich generation mom is multi-tasking, researching care for themselves, their parents and their kids
  14. That's a big mistake considering women spend $3.3 trillion annually on consumer products, choose the over the counter medications, the hospitals, insurance plans and physicians that their families need.How to reach them? Caregivers have gone to social media to help with their lack of time. These fact come from data by the Pew Interest Research 2010, Boston Consulting group 2009 and Age Lessons survey 2011.65% of people spending time on social media are women82 % of moms seek second opinions via social meda65% of women who are online are searching for health infomration53$ of moms say social networks highly nfluence heath and wellness opinions
  15. Getting attention is difficult not only because of time constraints but also because caregivers multi-task. Because of this, those who are trying to reach caregivers have to be strategic, extremely concise and effective.
  16. Mothers and other caregivers are also using mobile devices to deal with overscheduling.
  17. Where can you find caregivers on the web? In a Nielson study March 2012 Pinterest is increasingly used by mothers with almost 5 million American moms visiting the site, representing more than a third of their unique visitors from home computer.In this same study they found that three out of four moms visit Facebook moms are 38 percent more likely to become a fan of or follow a brands online And In fact about one in three bloggers are moms, and 52 percent of bloggers are parents with kids under 18 in their household.moms who blog are more than twice as likely to follow brands and celebrities compared to the average online user.
  18. When we look at the caregivers of the elderly and disabled, Baby Boomers caring for aging parents rely on the Internet, and social media in particular, for emotional support and practical suggestions. According to the Age Lessons Boomer Social Media Study 2011, they spend more than 150 minutes per person per month viewing 1,010 pages on Facebook, that is over 70% more time and more pages than the average Internet user.
  19. So here are the sites that caregivers are visiting…family caregivers 1.Facebook [91%]2.Amazon [76%]3.Wal-Mart [41%]3.Federated Media Publishing [41%]4.Linked In [37%]Moms are the families chief memory officer 1 out of 3 minutes a mom spends online on a computer is on facebook43% of mom sareposting pictures on facebook 
  20. If you are targeting moms you also should target their children’s needs, The most important thing is to to be an ongoing resource of support, information, tips and even financial benefits that fit into this caregivers needs
  21. Here is a list of ways to engage caregiving women. How do we take these steps?
  22. Ask women what they want. Focus groups and surveys are extremely important sources of information and should be done before attempting to reach your audience. Another place to go is content analysis of chats and forums…there are at least 75 different health related chats registered on the Healthcare Hashtag project on twitter. This project provides transcripts of these chats and they can be used, via content analysis, to find out what women need and want…women who have certain disorders, who are giving care to elders, disabled, and who are mothers. You can also look at previous research. For example…consider the decision making process
  23. Mothers’ decision making processes regarding health care for their children is based on 5 elements according to research published in the Public Healh Nursing Journal 2001. The first element in the process is the perceived degree of seriousness of the child’s illness. Next is the mother's degree of fear about the child's condition. Third is the attitude of the health care provider. Fourth is the mother’s previous experience with the situation and fifth is the social support that the mother has. These are all areas in the decision-making process that can be impacted by health communication. One interesting finding of the study is that there were no significant differences in decision-making process by first time mothers and by mothers with more than one child. .Public Health Nurs. 2001 May-Jun;18(3):157-68.Mothers' decision-making processes regarding health care for their children.Gross GJ, Howard M
  24. And in another study, a review of the 149 studies on decision making and support needs published in Health Expectation 2008, the areas where parents needed support were in information, specifically where to get information, in having a sense control over the process and in how to deal with discussing their decisions with others.Here, support, finding information easily and feeling empowered are key.
  25. Another strategy to engage caregiving women is to accommodate time constraints and attention demands. Be easy to find and easy to connect with—have a presence in all the places where these caregivers are in the social media melliuHave real-time meet-up opportunities for caregivers that involve their children or elder/disabled individual
  26. A third way to engage caregivers is by connection with influencers. the Manhatten Research group study of 2010 found20% of Americans are health influencers—all are femalesThey directly impact at least 2.8 people each Find these influencers by searching for women who have large numbers of followers or high readership in blogs, facebook and twitter. I’ve been studying a breast cancer chat group called BCSM. BCSM is the brainchild of two women who have had breast cancer. You’ll notice I don’t call them survivors because some of the participants in their chat group don’t like that word. Anyway, BCSM started after Jody Schoger attended a national conference on metastatic breast cancer. There she met several breast cancer bloggers, influencers in the breast cancer community. One of these women, Rachel Cheatham Moro was an financial analyst diagnosed with stage 3 bc at age 34. She used her understanding of numbers to reveal the secret world of the susan b komen for the cure finances, and its true stance on actually funding research to cure cancer. She was connected to quite a few bloggers who ranted and railed about breast cancer, the pinktober (which is what they call october) and especially metastatic breast cancer. Another attendee was Susan Niebur, a 34 year old mom,,an astrophysicist and the author of the blog Toddler Planet, She was a mom blogger first before getting cancer and spoke at BlogHer about her journey. Her website has had over 2 million hits and many, many followers. Jody’’s meeting started a phenomenon which I will tell you more about later but remember this slide.
  27. The next step in engaging caregivers is to achieve credibility. This is done by engaging influencers…If you can reach the 35 million influencers you effectifly reach 101 million through Facebook, twitter, instagramor pintrest.But another important component of credibilyt is engaging expertsAnd the last element of the mix is to not only provide value but also be about what women value
  28. When you support what women value you need to support relationships. Women Value Relationships.Supporting this canhugely increase your message credibilitySome ideas to support relationship is to By providing useful information based on real-time, real-life questions, to Provide a 24/7 forum for women to discuss topics and tosupport each otherTo supply tools that help in real time like meet-ups and respite opportunites. Provide calendars and connections to organize help
  29. To get the busy caregivers attention your messages must contain all these features.
  30. One of the ways to support relationships is to provide a place for women to support each other. And this gets me back to #BCSM. Without really planning it, two women have created a support community on twitter for women who have breast cancer, have had breast cancer and for their caregivers who are supporting them.This chat is a phenomenon…Started July 4th 2011 it is consistently the most active health chat on twitter..
  31. I introduced Jody in a previous slide. The other woman involved in starting the #BCSM twitter chat is Alicia Staley. Jody and Alicia met on twitter and got the word out to the bloggers that Jody had met that they were going to start a tweet chat to support women with breast cancer. By October 2011, they added Dr. Deanna Attai, a breast cancer surgeon as a co-host.This chat is a weekly forum. But it is much more than that. Participants have made it a point to meet up with each other, across continents. They have attended funerals. Participants have come up with the phrase bat-signal #bcsm to let people know that they will be watching out for each other…if there is a crisis, they will be there for them on twitter.#fearlessfriends is another phrase that is part of their community. It comes from the last tweet of a blogger who was an active participant who died during the first year. This is a rallying call for them as well.Their credibility is enhanced by the expert participation of Dr. Attai and also a number of physicians who are open to learning from these women, including radio-oncologists and other oncologists who ask questions and learn from them. These physicians answer technical questions as well.
  32. Another endeavor which puts everything together is Crohnology. Crohnology is a website started by Sean Ahrens for people w/ crohn’s disease and ulcerative colitis. Sean is a 26 year old computer whiz who has created a web-based patient community with attitude, and a lot of innovation. He says, “I’m building as a new way for patients to share health information online,” The website is astonishing…combining the opportunity for getting support and finding each other for meet-ups in real life, asking questions and getting answers, and tracking illness. The site combines value and credibility with support.I found it a good idea to build a solution that could scale… I saw things like Facebook, Wikipedia and realized maybe this model could apply to patients sharing knowledge, “ Ahrens says.  “Currently “Crohnology” has over 2,400 patients with Crohn’s and colitis from 40 different countries around the world.
  33. That platform is cutting edge, “The key parts of Crohnology are health-tracking, social network, and treatment knowledge-base.  They have an online health tracking interface that lets patients update their health over time.  That health tracking can take place on the patient’s mobile phone too. Over a simple web interface, or by (text messaging). patients on Crohnology can also create a treatment “timeline”.  That treatment timeline has what treatments (medicines, supplements, diets, or mind & body) taken and when.”  In other words, patient can create their own abridged medical record online with current infographics.“My fundamental tenet is that patients are experts in their own experience, and that experience is VASTLY underappreciated.”  Ahrens believes that patient advocacy is changing.  “I think online communities are the new patient advocacy groups.  It’s like the newspaper versus online news.  The medium has changed, and so the advocacy needs to move here.  If you think about patient advocacy groups, they are still, in a way, this old model of top down information.  Patient communities allow for the social revolution that has happened everywhere else on the web to happen to advocacy. Why do we need an intermediary to connect to other patients? There is no need,” This is one of his map showing where people in the community live and how they can meet up with each other in real life.
  34. Finally, you need to be shareworthy. #BCSM and Crohnology are. Being shareworthy means being able to post photos for sharing (the pinterest/facbook model), providing interactive tracking and useful information (crohnology) as well as support (meet-ups and chats like BCSM).
  35. Another group Caregiver Action: formerly National association for family caregivers has an incredibly useful application that provides real value to the caregiver. Its called lots of helping hands.Features of Lotsa Helping Hands are aHelp Calendar:  which enables members to schedule and sign up for tasks that provide caregiver support including meals for the family, rides to medical appointments, and visitsCommunity Building Features: Members can communicate with one another through message boards, post personal blogs, share photos, and send well wishes to the family. There are Custom Sections: where they can. Add a ‘Donate’ tab or special recipes or a personal blog. Theres a Photo Gallery: .Message Boards a place for Well Wishes: and a place to keep track of special OccasionsI thought the opportunity for scheduling real life help was one of the most useful features.
  36. I want to end with a quote by Former First Lady Rosalyn Carter . She explains what a caregiver is this way: The challenge for us is bringing caregivers into the new information infrastructure. I hope I have given you some ideas.