I heard an interview recently with Dr. Paul Farmer and Ophelia Dahl, two of the founders of Partners In Heatlh (PIH) PIH is an organization that has been improving health in the poorest communities around the world for the past 25 years. They have a very wholistic view of what healthcare means, and their principles support much of what we talk about in health literacy.
When asked what lessons they have learned that can help us here is the US to make health care reform work, they had two simple answers. I am paraphrasing them here:
1. More health care needs to take place in the home. That's where healthy and unhealthy behaviors happen and where more care and prevention needs to happen.
2. We should make more use of community health workers: people less trained than doctors and nurses who go out into the community and/or to people's homes to educate and sometimes treat.
You can read highlights and download the interview here:
So my question is: What have people been doing in these regards in your health literacy work? What programs or efforts have you done or seen that addresses these 2 key methods of making healthcare work?
In the past year, I've come to the same conclusion regarding home health care which is, to me, primary care (though I realize the medical profession claimed they are the primary care providers). To me, just as in many other areas that have been professionalized, we've come to believe and accept that the services of health care must be provided by people with degrees and training and, with some exceptions, we've abdicated our own responsibilities for learning and caring for our health, that of our children and older population.
But go back in time only and few years, and we'd find that such care was learned at home and provided at home. That era was followed by a time when at-home care was supplemented with out-of-home care. Then, in more recent years, we've experienced a shift to professional care with little care provided or learned in the home.
At one point, first aid and home nursing were taught as part of programs know first as domestic science, then home economics and now family and consumer sciences. I still have my home nursing book on my bookshelf! But in the 1970s going forward, many schools and colleges reduced course offerings in practical life skills.
Over the past 20 years, reduced hospital stays and increased outpatient procedures have become the trend. Patients are sent home with instructions for post discharge care. How many individuals and others have a sufficient level of health literacy to understand the instructions and accurately and effectively provide the prescribed care if they haven't been taught the how-tos of such caregiving?
When I guest lecture in public health classes I survey students for the number who have had first aid and are prepared to apply that aid. I have yet to have a hand raised. Given that an individual and those nearby are the actual first responders, I am concerned about our ability to handle both small and larger injuries that occur in the course of living or during an emergency, including diseasters. Research shows that a little over 90% of emergency responders are those on-site; the professional "first responders" are the second line of care. What kind of future are we facing when we depend primarily on professionals? and what may happen as the supply of professionals is squeezed by pending retirements at the same time that our population is aging?
With increasing costs of professional health care and with the Affordable Care Act emphasis on prevention as a responsibility of each individual, family or other group, an opportunity has arisen for a back-to-basics initiative. I believe it's again time to teach each individual first aid, home nursing and preventive health care including physical, oral, mental and yes, social. Research clearly shows that positive relations are linked to positive health and well-being. Thus, not only is it time for learning how-tos about health care in general, but for a re-emphasis on interpersonal and family relations.
Here at the University of Maryland, we are emphasizing health literacy both through initiatives of the Horowitz Center for Health Literacy and through the University of Maryland Extension outreach Health Smart programming. We are conducing Healthy Homes programs that teach how to have healthy, near environments. We're doing research to identify the kinds of heath messages and channels of communication that are preferred by rural, low-income mothers of varying health literacy levels. We're also leading a multi-state effort to teach health insurance literacy so that the American population can make wise health care plan purchase decisions and smart use of the resulting insurance to meet their individual and family needs and circumstances.
Now, I'm thinking about how to teach first aid, health care and prevention skills in a way that enables individuals of all levels of health literacy to understand the reasons and ways of providing home care. I'd like for both youths and adults to have at least basic skills.
To reach such a goal will require the time and talents of many people. I'd like to know who is working, or willing to work, on such teaching-learning modules and to explore how we might work collectively to maximize our resources.
Bonnie Braun, Professor, Family Science
Faculty Scholar, Horowitz Center for Health Literacy
Former President, American Association of Family & Consumer Sciences
I agree with Bonnie that little effort has been directed towards improvement of community health literacy skills. In addition, there has been a lack of attention on the environmental and/or contextual factors that impact health literacy. There has been over emphasis on individual factors and over dependence of primary care physicians, who are often unaware of the patient's surroundings and context.
I work in an underserved community and would be willing to collaborate on areas of mutual interest and need.
"Religion often sees God as an answer. Spirituality sees God as a question."
Nadia Ali, M.D, M.B;B.S, MPH
Clinical Assistant Professor, School of Medicine of Temple University
Associate Program Director,Dept of Internal Medicine
Crozer Chester Medical Center,Upland, PA, 19013
Thanks, Bonnie, for this thoughtful response! Can you tell us more about the Healthy Homes programs?
Hi Julie and colleagues. Thanks for the interview and the question. It's heartening to hear support for the efforts of those of us in the health literacy community. Making use of more providers to handle primary care tasks is a smart approach, from a practice and a financial perspective. It frees up those with more skills to practice closer to the top of their licensure, and provide a broader range of care to more people.
We've been publishing easy to read self help health books since 1999, all written at a 3rd to 5th grade level. The purpose of the books is to allow those with limited literacy (or anyone, really) to care for themselves and their loved ones more effectively, and to accomplish exactly what Farmer and Dahl espouse: handle more primary issues in the home, without having to use the healthcare system's resources unnecessarily. Research done by Ariella Herman in her Head Start programs, using a copy of our book, What To Do When Your Child Gets Sick, has borne out our assumption that providing people with a book that they can read and use will empower them to make better decisions at home and reduce unnecessary clinic and emergency department visits.
Glad to provide more information on Healthy Homes.
In 1999, Congress established the Healthy Homes Initiative within HUD’s Lead Hazard Reduction program (Alliance for Healthy Homes, n.d.). The initiative supports research and interventions in areas such as:
1) Toxic materials (e.g., lead, asbestos, pesticides, and household products)
2) Dangerous gases (e.g., carbon monoxide and radon)
3) Hazards that cause and contribute to asthma (e.g., dust allergens, molds, environmental tobacco smoke, and pests)
4) Safety and health concerns
In 2000, the Healthy Homes Partnership between the HUD Office of Healthy Homes and USDA-National Institute of Food and Agriculture Extension was established. You can learn more at: http://www.healthyhomespartnership.net/Pages/default.aspx There are 30 states who participate in the partnership. In 2009-10, they reached about 10.5M consumers and trained 3,628 professionals.
The foundation of their community-based programming is the 9-chapter Healthy Home Book. Each chapter is written at a low-literacy level by an Extension Specialist with action steps that are simple and affordable. The book is currently under review for principles of plain language.
In addition to direct education of consumers, some Extension faculty conduct research to build the body of knowledge that undergirds the educational programming. In Maryland, our Department of Family Science, the Maryland Institute for Applied Environmental Health, both in the School of Public Health, and the University of Maryland Extension are collaborating to conduct research and teach about healthy homes. An article by three of our Maryland teams is located in the Journal of Extension at: http://www.joe.org/joe/2011april/a9.php The article ties together healthy homes programming and public health.
Bonnie Braun, Professor and Extension Specialist and Faculty Scholar, Horowitz Center for Health Literacy
Hi Julie and others: The issue you raise is an important one. As far as I understand The Affordable Care Act (ACA) is placing much emphasis on preventive care. One of the challenges is that health care is so much oriented to "medical" care that there seems to be very little incentive for healthcare insitutions to focus on prevention activirties. ( true they are taking advantage of whatever opportunity exists by establishing community health centers). But funding for prevention is at the low end while there is a lot of funding for "disease" and institutionalized forms of care.
Bonnie and Michael are correct in pointing to the need for more emphasis on primary care in the family and community.
One of the things I had hoped for was ( and still hope for) an increased role for community health workers in helping to provide some of this care within the family and the community. They are mentioned in the ACA and that is good. But there is no funding allocated for their work. In other words, there is prescription but no provision. It would be great to test some health literacy interventions with this group of workers who could work with individuals and families in the community. Even using one of the IHA's series of low lever readers that Michael mentioned or Bonnie's diabetes or nutrition education framework. I would certainly be amenable to working on something that could be tested across States.
I would hope that some kind of legislation would be proposed allocating funds to build up this category of workers so that they can do some of the things Dr farmer talks about. We need also to remember that while their roles are equally important, community health workers need greater financial support than those in the developing countries.
Thanks to all of you for continuing this discussion!
I, too, am interested in increasing our capacity to use some form of community health workers to help community members use the resources like the ones Bonnie and Michael have mentioned. Michael and Bonnie, can you tell us any more about how your resources are supported in the homes? Are there ways that you have found to use a a go-between mentor or counselor to help introduce the books and/or train people to use them?
I know of some other projects going on with Community health workers and home visiting models. Please share them with us! (And I will be coming after some of you who I know are working on these types of things! ;)
As someone involved in advocacy on behalf of people with chornic illnesses/disabilities and their families, I've seen a disturbing trend over the years. California's "in-Home Supportive Services" once hailed as a national best-paractice model for assisting Mediciad-eligible people with disabilities to get the intermittant care they need in order to remain independent. The program has sustained harsh cuts limiting eligibility to those with only the most debilitating conditions. Hours have been cut back so few in need have access to enough care to meet their needs.
California also recently dismantled their adult day health care program. This was the ONLY program that allowed non-poor to access services that keep family members out of a nursing home and allow family caregivers to keep working during the week. Message: if you want community-based long-term care services you must be poor!
Even in the ACA, there is little recognition of how to help people manage palliative care or assistance with activities of daily living that do not and cannot be handled in a clinic setting and mostly do not need traditional "medical care" (or may need limited medical attention that could be handled by a nurse).
There has been trend data for decades now about "the aging population" and now increasing numbers of disabled veterans. Yet "health care" continues to be defined narrowly when it comes to public policy; this type of care always seems to get short shrift--despite the cost savings potential of keeping people out of institutional care.
Is there a way the HL community can help in framing this issue?
Need to convince legislators and state agencies that it's pennywise and dollar foolish to cut community based supports because keeping people in their homes is mutually beneficial, has better health outcomes, and more cost-effective than institutional care. Second, in each state there is a Governor's Council on Developmental Disabilities that advises on issues like HCBS, day programs, etc. and can be found at http://www.nacdd.org/about-nacdd/councils-on-developmental-disabilities.aspx
Lauren Agoratus-Family Voices NJ
You hit on an important point! (One that short-sighted policymakers aren't alwasys willing to respect). But the phrasing you used, reminded me that I actually did use story-telling communication to make this case last year in a public radio opinion piece, using the exaple of how a program closure would impact my family. Here it is: http://www.kqed.org/a/perspectives/R201109140735
Since 2004, I have been training Maternal Child Health home visitors to promote maternal health literacy, defined as the cognitive and social skills and motivations that enable a mother to obtain understand and use information [and services] in ways that maintain or enhance her health and that of her child (Renkert & Nutbeam 2000). This is the WHO definition made specific to mothers. It is broader than the US clinical definition in several important ways: it includes social skills (interactive skills) acknowledging that reading and numeracy are insufficient to function in the Information economy, especially in the high tech heallthcare arena. It includes motivation, indicating that factors orther than communication skills determine a persons health literacy. Perhaps most important, this broader conceptualization includes use of information. Understanding is an essential first step , but still a long way from health promoting action. FInally, it specifies using info in ways that promote health, going beyond decision making. In order to involve community health workers as Farmer and Winston and Bonnie suggest, we need to broaden our thinking.
I chose home visitors as a channel to promote health literacy for a long list of reasons, chief among them: home visitors' unique access and long-term trusting relationships enable them to observe and to influence the interactions of multiple factors that determine a mothers' health literacy.These factors are not readily visible or modifiable in a community setting.
We trained visitors to build parents' interactive and reflective skills while providing direct assistance to make meaning from selected health education materials (Beginnings Guides) and information from healthcare providers and to apply it in vivid real life circumstances. The primary teaching and learning strategy in the intervention is reflective questioning. This does not imply that practitioners forget what they know, but rather that they use their expertise to formulate reflective questions and lead reflective conversations that facilitate self-discovery and action planning. This approach addresses the social determinants of health and the empowerment aspect of health literacy. health literacy is empowering because, and to the degree that it enables a person to increase control over their health and its determinants.
A critical element is the routine use of data by practitioners to tailor interventions to particular families and circumstances. Many home visitation programs use the Life Skills Progression instrument (LSP) approved to demonstrate progress to federal benchmarks of effectivenss in home visitation (Maternal Infant Early Childhood Home Visitation -MIECHV under the Affordabel Care Act). Using the LSP, home visitors routinely monitor parents' use of health information and services as well as self-care, support of child developement and health behaviors important to both parent and child health (smoking, alcohol, drugs). Among these are indicators of maternal health literacy, situated in surrounding family conditions. Two health literacy scales derived from the LSP enable home visitors to monitor "healthcare literacy" - use of info and services and "self-care literacy" management of personal and child health at home. Intimate knowledge and data on surrounding family conditions suggest approaches to improving health literacy for a particulary mother. The routine use of data - especially where it is currently collected- enables visitors and parnter researchers to consider the context in which we expect people to use health information, not as background noise, but as the primary determinant of the health literacy task, a persons capacity to accomplish the task, and the support needed.
Four studies funded by AHRQ/NICHD, National Library of Medicine and Missouri Foundation for Health indicate the intervention is effective in increasing health literacy regardless of reading ability and in spite of depression. Low maternal health literacy is associated with child developmental delays and reduced participation in early intervention.
The average American spends 1 hour per year in a clinical setting. Farmer and commenters here are right. We need more community health workers trained to promote health and health literacy in the community in the course of their usual activities, along with routine use of data by practitioners and their supervisors to continuously increase effectiveness and sustain funding. One action step would be to review existing data sets in search of indicatiors of health literacy and influential surrounding conditions (eg social support, living conditions). Repeated measures would show progress/regression. This is to suggest a paradigm shift from health education, anticipatory guidance, information giving that aims to increase knowledge and compliance to an empowerment approach that aims to increase autonomy and engagement.
Thanks, Sandra, for expanding on this model! One thing that strikes me is the emphasis (both in your definition and approach) on "the cognitive and social skills and motivations that enable....[people to improve health literacy]"
I am reading a book called "How Children Succeed: Grit, Curiosilty and the Hidden Power of Character" by Paul Tough. It discusses new research that shows how certain character traits and social skills have been found to be better predictors of success in academics and all other aspects of life than the tradiltional cognitive skills. The work focuses on children, but notes that these character traits can be learned over time. They include persistence, grit, and an ability to get beyond failure. I think this is highly relevant to our work at improving people's health literacy and in particular to that elusive piece of using the information to change habits.
It sounds like your home visitors address these character traits and social skills well. I bet that is a large part of why this model has been successful!
I just wanted to add to Bonnie’s great comments about the federal Healthy Homes programs.
According to the EPA, Americans spend about 90 percent of their time indoors; therefore, focusing on the home environment is an important component of improving the health of individuals.
Addressing issues in the home can prevent many health problems including allergies, asthma, injuries, and lead poisoning, yet there remains a gap in actionable, plain language materials for the general public. To remedy this, CommunicateHealth has been working with HUD, CDC, EPA, USDA, and the Department of Energy to develop a one-stop-shop for healthy homes information for consumers. We’re hoping the website will be up later this year.
After conducting extensive formative research with consumers, it was clear that people rarely connect their home to their health. Unfortunately programs addressing these issues, along with other environmental health areas, are often the first to get cut during lean times. Until the site is launched, I would recommend the following plain language resources to home health professionals and the larger public health community: