Running head: HEALTH LITERACY & FAMILIES OF CSHCN H ealth Literacy Needs o f Famil y Members and Caregivers of Children w ith Special Health Care Needs Sherri L. Cook University of Florida
HEALTH LITERACY & FAMILIES OF CSHCN 2 Abstract The pur pose of this article is to explore the complex health literacy needs of families who have children with special health care needs (CSHCN) Health literacy is a national and global issue. Neither reading literacy nor higher education is a guarantee of health literacy. Higher health literacy leads to better health outcomes (CDC, 2016). There is a significant population of our children who have some form of special healthcare need. Some estimates suggest between 13 18% of US youth can be classified as CSHCN (Child Health USA 2014 ; NS CSHCN 2009/10). Of that population of CSHCN, about 57% have more than one chronic conditio n ( NS CSHCN 2009/10). The parents and caregivers of CSHCN need a high level of health literacy and good health communication with providers to provide adequate care to their children. Keywords : children with special health care needs, CSHCN, health literacy family members, caregivers
HEALTH LITERACY & FAMILIES OF CSHCN 3 H ealth Literacy Needs o f Famil y Members & Caregivers of Children With Special Health Care Needs Statement of the P roblem Health literacy (HL) is a national and global issue. Like reading literacy, health literacy will impact almost everyone in some way at some point in their lives ( World Health Organization [ WHO ] 2013 p. iv). H owever, h ealth literacy is more multifaceted than reading literacy According to the Affordable Care Act of 2010, health literacy is defined as, to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services in order to make appropriate health dec (p. 1252 ) This definition was previously used in the Healthy People 2010 guidelines and in Health Literacy: A Prescription to End Confusion ( U.S. Department of Health and Human Services [HHS], 2010; Nielsen Bohlman, Panzer, & Kindig 2004 ). The authors of A Prescription (2004) state d literacy, the n, is a shared function of cultural, social, and individual factors (p. 32). They state further that 2010] acknowledges the need for future development of definitions and measures that address the critical role that society, the health system, and the education system play in creating a truly health Nielsen Bohlman et al. 2004, p. 37). Wh ile the aforementioned definition is utilized as the national legal standard, there is still no clear consensus on an educational and public health standard definition Many individual and institutional researchers have formulated a working definition of H L that conforms to their particular need, field or profession Srensen et al. (2012) found 17 different definitions of the term health literacy (p. 83 ). Of these definitions, ten refer to a
HEALTH LITERACY & FAMILIES OF CSHCN 4 and It can be important to distinguish between capacity / ability versus skills Capacity and ability both imply a quality that is innate and fixed. Skill signifies an attribute that can be taught and learned and that can chan ge over time Wolf, et al. (2009) introduce the term, health learning capacity Studies support the fluidity of an a lower health literacy ( Office of Disease Prevention and Health Promotion [ ODPHP ] 2010, p. 7 ) As Srensen, et al. H ealth literacy is also a process, which involves the 92). A health literate person must know how to deal with an increasingly complex medical system and a barrage of health information, medication choices, and health insurance options. from many topic areas, including the body, healthy behaviors, and the workings of the h ealth 2010, p. 5). It is clear that a person who is health literate must be so much more than a literate reader. Scope of Health Literacy Problem In the United States, there is a n overall low rate of health literacy. N early 90% of Americans lack the degree of health literacy needed to get the full benefit of any medical advice they receive ( Centers for Disease Control & Prevention [ CDC ] 2016). Because health literacy involves a different set of skills than reading lite racy, e ven a well educated person can have a low health literacy. filing income tax returns, or choosing between health insurance plans may be similarly
HEALTH LITERACY & FAMILIES OF CSHCN 5 indecipherable for most adults, regardless of literac Bohlman, et al. 2004, p. 61). Neither r eading literacy nor higher education is a guarantee of health literacy. Another related but distinct aspect of health literacy is health numeracy. In the most basic terms, t his re fers to math skills as they relate to health and healthcare. Just as there are many skills involved in health literacy, there are many skills involved in health numeracy, including dealing with prescription dosages, understanding lab results, and understan ding risks and probabilities. According to the CDC (201 6 ), the percentage of U.S. adults who score in the highest level of health numeracy is even less than that of health literacy about 9% of Americans. C hildren with S pecial H ealth C are N eeds Health literacy is important for all Americans but for those individuals with chronic health problems, health literacy can improve their daily health and long term health outcome (CDC, 2016). Children with special health care needs are a vulnerable subset of this population. ; however, a specific definition is required to quantify data. T his paper will use the definition for CSHCN from the Maternal and Child Health Bureau which st special health care need if, in addition to a chronic medical, behavioral, or developmental condition that has lasted or is expected to last 12 months or longer, they experience either service related or functional consequences, including the need for or use of prescription medications and/or specialized therapies Maternal and Child Health Bureau [MCHB], 2014, para. 1 ). Prevalence of Children with Special Health Care Needs. The ideal childhood is happy and healthy. However, for many children in the United States, reality is far from this idyll ic
HEALTH LITERACY & FAMILIES OF CSHCN 6 archetype Some estimates suggest between 13 18% of US youth can be classified as CSHCN (Keim Malpass, Letzkus, & Kennedy, 2015, p. 1). While not every child with special health care needs will require intense or prolonged medical care, many will. Further, many CSHCN have comorbid conditions that require the need for multiple pediatric specialties. According to the N ational S urvey of C hild ren with S pecial H ealth C are N eeds (2009/10) about 57% of CSHCN have more than one chronic condition. For example, a recent study found that up to 95% of children between 4 and 8 years old who are on the autism spectrum had at least one other condition or syndrome (Soke, Maenner, Christensen, Kurzius Spencer, & Schieve, 2018, abstract ). Impact o f CSHCN o n Families a nd Caregivers Of course, children do not live alone. They are dependent on family and caregivers for everyday health needs access to medical care, and the performance of any home based care. This paper will u to recognize that many children are now regularly cared for by adults other than their biological parents. Parents /caregivers of children with medically complex conditions must cope with and learn how to navigate the health system and the health insurance quagmire. with special health care needs and their families often need services from multiple systems h They specific knowledge, or DSK (Carden, Newlin, Smith, & Sisler, 2016, p. 1 22). As with all health consumers h ealth literacy for these families /caregivers involves so much more than being able to read and write. There is a whole myriad of skills that they must know or learn in order to properly care for the ir children.
HEALTH LITERACY & FAMILIES OF CSHCN 7 I mpact of Parental Health Literacy on CSHCN The low rate of health literacy in the United States may impact families of children with special health care needs disproportionately Reasons for this are varied C hildren with SHCN have: more complicated health care n eeds ; a greater need for medical care ; an increased usage of health care services ; an increased need for home based care ; and h ealth care needs that change over time Additionally, t his extra level of care can have profound impacts on the family unit, from special financial necessity for one parent to stay home with the child, and the mental and physical burden of caring for a sick child (Dey, Wang, Jorm, & Mohler Kuo, 2015, p. 409 ; HRSA 2004). According to the National Survey of Children with Special Health Care Needs of 2009/10 a 22% of families with CSHCN ; the percentage of CSHCN whose families spend 11 or more hours a week providing care is around 13%; and finally, the percentage of CSHCN whose conditions cause family members to cut back or stop working is 25% ( NS CSHCN 2009/10 ). H ealth Literacy Needs o f Families/Caregivers o f CSHCN The complexity and brea dth of health literacy demands for these caregivers can often be overwhelming. These demands can i nclud e providing home car e for a chronically sick child ; understanding medical information from a variety of sources ; understanding, obtaining and administeri ng medication to the child (often multiple medications) ; navigating the health care system ; navigating the health insurance system ; understanding and utilizing federal and local laws and regulations related to and educational rights ; an d finally, communicating with a variety of health care personnel all of whom have their own specific jargon doctors, nurses, front desk, OT, PT, speech and audiology, orthotics, mental health care providers, pharmacists, special education
HEALTH LITERACY & FAMILIES OF CSHCN 8 teachers, school administrators, and more. Almost 5% of these families have more than one child with SHCN, which compounds th e level of burden ; this equates to more than 1.5 million families ( NS CSHCN 2009/10 ) Wolf, et al (2009) describe in detail what literacy needs are required for families of CSHCN: The parent and pediatric patient, in turn, are expected to be able to provi de an accurate account of behaviors or symptoms, and both raise and answer pertinent questions within a medical and social history taking process. Beyond the physician visit, the parent must remember what transpired during the interaction with the physicia n to make appropriate decisions. In addition to the interpersonal communication, information about recommended health behaviors, promotion for self care, treatment decision making, or even directions for navigating a particular health system are conveyed b y using various health technologies. Families are expected to be able to use available communication tools, which may range in complexity from print forms, brochures, and telephone contact (p. S277). The h ealth literacy level of parents /caregivers impacts the health outcomes of CSHCN. The life course approach to assessing needs of CSHCN emphasizes the importance of early recognition and treatment. Anderson, Beckett, Wells, & Comeau (2017) state : should be seen as a societal investment rather than simply a cost, in the way that education is, with the benefits accruing over the li fe course rather than in any enrollment period or fiscal year. The benefits of children, especially CYSHCN [Children and Youth
HEALTH LITERACY & FAMILIES OF CSHCN 9 with Special Health Care Needs] entering adulthood in a healthier state has implications not only for individuals but also for s ociety in general ( pg. S100 ). Review of the Literature There is a lack of available data related to the parental or caregiver health literacy needs o f CSHCN Keim Malpass, et al. (2015) reviewed the literature about health literacy as it relates to children with special health care needs and their families / caregivers. Their findings point out the lapses in research in this vital area. parental/caregiver health literacy of CSHCN, even though they may be at particular risk for inadequate information exchange, confusion regarding complex home medication regimens and treatment instructions, and non (p. 2). Although many children with special health care need s have more than one health condition, most studies only look at children with a single disease process, such as asthma or diabetes Keim Malpass, et al. (2015) state morbid conditions, and none of the included studies involv (p. 9). Many of these studies involve parental health literacy and childhood asthma ( Gandhi et al., 2013; Harrington, Bailey, Zhang, Magruder, & Gerald, 2015 ; Yin, et al., 2017). Some studies focused on pediatric patients with diabetes (Howe, Cipher, LeFlore, & Lipman, 2015; et al. 2014) Another area of study was children with sickle cell disease. Carden, et al. (2016) studied health literacy and disease specific knowledge in parents/caregivers of children with sickle cell disease. They suggest that an instrument that tests disease specific knowledge would be more helpful for families or CSHCN than a general health lite racy tool ( p 130). Creary et al. ( 2017 ) found that sickle cell knowledge may de clin e over time
HEALTH LITERACY & FAMILIES OF CSHCN 10 achievement may be influenced by health literacy and baseline knowledge and may not be One rec ent study researched parental health literacy of children with cystic fibrosis (CF) ( Kern, McColley, Watts, & Rychlik, 2015). This lone study compared the health literacy levels between Hispanic and non Hispanic parents of children with CF. There was littl e statistical difference between the two groups of parents when data was corrected for socio economic status. The authors suggest this may not be a main cause of disparate outcome ( p. 58). Incidentally, the authors noted that, as of 2015, they believed their study to be the first to look at the health literacy of parents whose child has CF. M. Harrington (2015) explored health literacy in relation to paren ts of children with chronic kidney disease (CKD) The author stated that literature search. No articles were identified specific to caregiver and child health literacy as it relates to management of pediatric pati The author concluded by calling for more research, more evaluation tools, and more health literacy interventions. Research Questions The health needs of CSHCN are varied and complex. Therefore, the health literacy needs of parents and caregivers of CSHCN are also varied and complex. The research in this area of study has been somewhat limited to date. It is vital that the specific needs of the parents and caregivers guide both the research and the implementation of health li teracy programs. What communication methods do parents /caregivers find most helpful? What are the most effective way s to improve the health literacy of parents /caregivers of CSHCN? What are their perceived needs in terms of health education and health comm unication?
HEALTH LITERACY & FAMILIES OF CSHCN 11 Research Methodology Participant Population A qualitative survey was created and administered to assess the perception of health literacy needs of parents and caregivers of CSHCN in the Gainesville and Alachua County area. There were fifty four participants of whom fifty one reported to be the parent or caregiver of a CSHCN, either full or part time. Participants were approached at either a special needs expo or online through Facebook special needs closed group The s urvey was conducted elect ronically through Google Survey format Respondents were asked about their avenues of health communications and their suggestions on how to improve their acc ess to It contained nine closed ended questions and two open ended questions. For the purpose of this survey, "health care provider" included doctors, nurses, physician assistants, or therapists. Limitations There were several l imitations to the study This was a time limited study that occurred between January March 2018. There was a small sample size of n=54 The 2017 census count for Alachua County was 266,944. The population under the age of 1 8 was 18.1%. Given the national statistic of around 15% of children and youth who have special health care needs, this would lead to an estimation of 7,200 children and youth in Alachua County with special health care needs. The survey attempted to address language limitations. However, it was available only in written English. This was not a blind or randomiz ed study No personal or demographic data was recorded ; a conscious attempt was made to keep questions to a minimum due to the time constraints at the conference where data was collected. The goal was to impede as little as
HEALTH LITERACY & FAMILIES OF CSHCN 12 providers were seen; it was felt that participants would be more open and honest i f it were clear that the data would be strictly confidential and not be used for a specific provider (such as UF Health Shands). Finally, this study relied entirely on self reported data. Findings A summary of the results is presented here; the full surve y is available for reference in Appendix A. T he survey addressed preferred methods of communication between caregivers and providers. The first question (Q1) asked if the respondent was the parent or caregiver of a CSHCN; 51 of 54 responded yes. The second Which way(s) do you prefer to get information about ( Figure 1 ). A pproximately e ight out of ten parents / caregivers (81.5%) prefer to get health information about their to face conversations The second favorite method (53.7%) was direct electronic communication with the health care providers in the form of email or a patient portal system, such as MyChart. Somewhat surprisingly in this digital wor ld, close to half of respondents selected printed materials (46.3%) An equal percent indicated Internet resources. Other choices were smart phone and iPad apps or classroom setting. Because respondents could choose more than one answer, the percentages do not equal 100%. Two questions (Q3 & Q5) dealt with t he s ource of health information for Where do you get the MOST helpful information about Table 1 ). The top two resp onses had an equal number of responses (n=14, 26.9%) their providers and the Internet. Other choices were nurses (3.8%), other health care providers (15.4%), family or friends (17.3%), and other/write in (n=4). The fifth question ( Table 2 ).
HEALTH LITERACY & FAMILIES OF CSHCN 13 Internet or other health care providers (besides doctors and nurses) both garnered 11.1% of responses. Family and friends were the first choice for 7.4%, and nurses were first for 3.7% of respondents. Three questions (Q4, Q6, Q9) addressed oral communications between providers and (Q4) 69.8% replied No, 26.4% replied Sometimes, and 3.8% rep lied Yes. In response to how (n=27) understand most of what the health care When asked If English is not your primary language, does your health care provider offer you materials or resources in your primary language? (Q9 Table 3 ) n one of the respondents reported language as a barrier. Two questions dealt with the level of shared decision making and support parents felt which are two components of family and patient centered care. When making process 59.3 % always fe el like a partner in making decisions on behalf of the child ; 24.1% usually feel like Question 7 asked if they have someone, like a social worker or case worker, thr ee people who responded, 77.8% said No, 18.5% reported having a resource person to assist them and 3.7% were not sure.
HEALTH LITERACY & FAMILIES OF CSHCN 14 The final survey question (Q10) was open ended : What else would be helpful to you care needs? There were 27 individual responses, which can be split into several broad categories: (a) b etter quality of provider communication (b) m ore accessibility to providers (c) i nterdisciplinary collaboration (d) c ase management services (e) m ore resources, and (f) s upport for mental health issues related to caring for a CSHCN. Lastly, there was an opportunity to provide comments or suggestions. These four responses were as follows: info on resources or she is not Discussion There is a lag between patient desire for good health information and their ability to successfully acquire that information. Of those surveyed, 81.5% of parents/caregivers prefer to get information about their child in face to face conversations. However, only 46% of respondents found these conversations most helpful. The majority of participants wanted health information to com care providers, with two thirds (n=36, 66.7%) of respondents choosing this option. Nevertheless only 2 6.9 % (n=14) of respondents reported providers as the most helpful source of health information. The pa rents want information from the providers, but the providers are not able to provide it in a way that is most useful.
HEALTH LITERACY & FAMILIES OF CSHCN 15 providers use too many medical or technical terms, less than half of respondents (48.1%) felt th needs. One possible explanation for this disparity could be a reluctance to admit to a lack of understanding of medical terms; another explanation is that the quality of health communication goes far beyond spoken vocabulary Health literacy, particular ly critical thinking skills, is needed to make decisions about a making has both impacts and is impacted by the health literacy levels of patients or their caregivers. This seems to be an area of strength with 83.4% of parents/caregivers always or usually feeling like a partner in the decision making process for All parents/caregivers of CSHCN, especially those with lower levels of health literacy, could benefit from a care coordinator. Most parents must research, coordinate, and make three people surveyed, 18.5% reported having a resource person, like a case worker or social worker, to help them coordinate their child Conclusions and Future Study These findings suggest the need for further study of this subpopulation. While these parents/caregivers prefer one on one conversations to learn more about the CSHCN in their lives, few health insurance co concerted effort to provide coverage for patient health education would help provide the support these families need.
HEALTH LITERACY & FAMILIES OF CSHCN 16 Additionally, for this group of participants, even when healthcare providers do not use medical jargon, health communication is still not optimal. P roviders need to be trained properly in the most effective ways to educate patients and their families. Health communication, like all communication, is bi directional. Both provider an d patient (or parent) must both speak in a way that allows the other to listen, and listen in a way that allows the other to speak openly. This is perhaps the most difficult aspect of health literacy. Health literacy can save lives as well as save money. A ccording to the CDC (2016), low levels of health literacy translate to more healthcare dollars being spent as well as higher rates of morbidity and mortality. In A Prescription to End Confusion the authors note that there are two types of costs associate d with limited health literacy: economic costs to society and the health Nielsen Bohlman, et al. 2004 p. 8 1 ). Health literate consumers help themselves, the health care system, and the nati on. When the lives of special needs children are on the line, this becomes an even greater cause. Because many children have more than one condition and many families have more than one child with special health care needs, it is vital that we learn how to address health literacy needs in this population. The World Health Organization (2013) described the need for patient aim to empower people as citizens, members of the workforce, consumers and patients so that families.
HEALTH LITERACY & FAMILIES OF CSHCN 17 R eferences Anderson, B., Beckett, J., Wells, N., & Comeau, M. (2017, May). The eye of the beholder: A d iscussion of value and quality from the perspective of families of children and youth with special health care needs. Pediatrics, 139 (Supplement 2) S99 S108. Carden, M. A., Newlin, J., Smith, W., & Sisler, I. (2016). Health literacy and disease specific knowledge of caregivers for children with sickle cell disease. Pediatric Hematology & Oncology, 33 (2), 121 133. Centers for Disease Control and Prevention (CDC). (2016). Talking points about health literacy. Retrieved F ebruary 24, 2018 from https://www.cdc.gov/healthliteracy/shareinteract/TellOthers.html Child Health USA 2014. (n.d.) Children with special health care needs. HRSA MCHB Child Find USA 2014 Retrieved February 24, 2018 from https://mchb.hrsa.gov/chusa14/population characteristics/children special health care needs.htm l Creary, S., Adan, I., Stanek, J., O'Brien, S. H., Chisolm, D. J., Jeffries, T., & Varga, E. (2017). Sickle cell trait knowledge and health literacy in caregivers who receive in person sickle cell trait education. Molecular Genetics & Genomic Medicine, 5 (6), 692 699. Dey, M., Wang, J., Jorm, A., & Mohler Kuo, M. (2015). Children with mental versus physical health problems: D ifferences in perceived disease severity, health care service utilization and parental health literacy. Social Psychiatry & Psychiatr ic Epidemiology, 50 (3), 407 418. Gandhi, P. K., Kenzik, K. M., Thompson, L. A., DeWalt, D. A., Revicki D. A., Shenkman, E. A., & I Chan, H. (2013). Exploring factors influencing asthma control and asthma specific health related quality of life among children. Respiratory Research, 14 (2), 1 10.
HEALTH LITERACY & FAMILIES OF CSHCN 18 Harrington, K. F., Bailey, W. C., Zhang, B., Magruder, T., & G erald, L. B. (2015). The impact of parent's health literacy on pediatric asthma outcomes Pediatric Allergy, Immunology & Pulmonology, 28 (1), 20 26. Harrington, M. (2015). Health literacy in children with chronic kidney disease and their caregivers Nephro logy Nursing Journal, 42 (1), 53 57. Howe, C., Cipher, D.J., LeFlore, J., & Lipman, T.H. (2015). Parent health literacy and communication with diabetes educators in a pediatric diabetes clinic: A mixed methods approach. Journal of Health Communication 2050 59. Keim Malpass, J., Letzkus, L.C., & Kennedy, C. (2015, Aug. 5). Parent/caregiver health literacy among children with special health care needs: A systematic review of the literature. BMC Pediatrics 15 (92), 1 10. Kern, A. S., McColley, S. A., Watts, K. D., & Rychlik, K. (2015). Disparities in parental health literacy at a pediatric cystic fibrosis center Pediatric Allergy, Immunology & Pulmonology, 28 (1), 55 59. National Survey of Children with Special Health Care Needs. NS CSHCN 2009/10. Data query fro m the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved February 24, 2018 from www.childhealthdata.org Nielsen Bohlman, L., Panzer, A M., & Kindig, D. A. (Eds). (2004). Health literacy: A prescription to end confusion. Washington, D.C.: The National Academies Press. Patient Protection and Affordable Care Act of 2010, 42 U.S.C. Title VII, Subtitle A, Â§5002 (b)( 21), p. 1252.
HEALTH LITERACY & FAMILIES OF CSHCN 19 Pulga on, E. R., Sanders, L.M., Pati o Fernandez, A.M., Wile, D., Sanchez, J., Rothman, R.L., & Delamter, A.M. (2014). Glycemic control in young children with diabetes: The role of parental health literacy. Patient Education & Counseling, 94 (1), 67 70. Soke, G.N., Maen ner, M.J., Christensen, D., Kurzius Spencer, M., & Schieve, L.A. (2018, March 9). Prevalence of co occurring medical and behavioral conditions/symptoms among 4 and 8 year old children with autism spectrum disorder in selected areas of the United States in 2010. Journal of Autism and Developmental Disorders Advance online publication. https://doi.org/10.1007/s10803 018 3521 1 Srensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., S lonska, Z., & Brand, H. (2012). Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health, 12 (1), 80 92. U.S. Department of Health and Human Services (HHS). (2000). Healthy People 2010 (2nd ed.) [with Understanding and Improving Health (vol. 1) and Objectives for Improving Health (vol. 2)]. Washington, DC: U.S. Government Printing Office. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (MCHB). (2016). Children with special health care needs. Retrieved February 24, 2018 from https://mchb.hrsa.gov/maternal chi ld health topics/children and youth special health needs#ref1 U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (MCHB). (2014). Child Health USA 2014. Rockville, Maryland: U.S. Dep artment of Health and Human Services, 2014. U.S. Department of Health and Human Services Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau. (2004). The national survey of children with
HEALTH LITERACY & FAMILIES OF CSHCN 20 special health care needs chartboo k 2001: Impact on f amilies Rockville, Maryland: U.S. Department of Health and Human Services. Retrieved February 25, 2018 from https://mchb.hrsa.gov/chscn/index.htm U.S. Department of Health and Huma n Services, Office of Disease Prevention and Health Promotion (ODPHP). (2010). National action plan to improve health literacy Washington, DC. Retrieved February 25, 2018 from https://www.healthypeople.gov/2020/tools resources/evidence based resource/national action plan improve health literacy Wolf, M. S., Wilson, E. H., Rapp, D. N., Waite, K. R., Bocchini, M. V., Davis, T. C., & Rudd, R. E. (2009, Nov.). Literacy and learning in health care. Pediatrics 124 (Supplement 3) S275 S281. World Health Organization (WHO). (2013) Health l iteracy. The solid facts [Online]. Retrieved February 24, 2018 from: http://www.thehealthwell.info/node/534072 Yin, H. S., Gupta, R. S., Mendelsohn, A. L., Dreyer, B., van Schaick, L., Brown, C. R., & Tomopoulos S. (2017). Use of a low literacy written action plan to improve parent understanding of pediatric asthma management: A randomized controlled study. Journal Of Asthma, 54 (9), 919 929.
HEALTH LITERACY & FAMILIES OF CSHCN 21 Appendix A Family Centered Care and Families of Children with Special Health Care Needs (CSHCN) Survey Disclaimer between families of Children with Special Health Care Needs (CSHCN) and health care providers. The goal is to help providers learn h ow to communicate effectively with families includes doctors, nurses, physician assistants, or therapists. Please answer each question to the best of your knowled ge and ability. Your feedback is entirely voluntary and confidential. Please Q1. Are you the parent or a caregiver (full time or part time) of a child with special health care needs? Yes No Q2. Which way(s) do you pre all that apply. One to one conversations Classroom setting with other parents Smart phone app Print materials (brochures, books, etc.)
HEALTH LITERACY & FAMILIES OF CSHCN 22 Email MyChart, etc. Internet (Search engines, social media, etc.) Other _________________________ Q3. Where do you get the MOST helpful need (s)? Their doctors Their nurses Other health care pro viders Family or friends Internet (Search engines, social media, etc.) Other _________________________ Q4. when talking to you? Yes No Sometimes Q 5 If you need help FIRST ? Their doctors Their nurses Other health care pro viders
HEALTH LITERACY & FAMILIES OF CSHCN 23 Family or friends Internet Q6. Which one of these statements BEST describes how you feel about the informatio n you get I understand some of what the care. making? Never Sometimes Usually Always Q8. Do you have someone (social worker, case worker, etc.) who helps you coordinate your Yes No
HEALTH LITERACY & FAMILIES OF CSHCN 24 Q9. If English is not your primary language, does your health care provider offer you mat erials or resources in your primary language? Yes No Sometimes English is my primary language Q10. What else ______________________________________________________________________ ____ Q11. Comments or Suggestions ___________________________________________________________________________
HEALTH LITERACY & FAMILIES OF CSHCN 25 Appendix B Figures and Tables Figure 1. Q2 : needs? Select all that apply. *Because respondents could choose more than one answer, percentages do not add up to 100. Table 1 Q3 : Most Helpful N % Their doctors 14 26.9 Their nurses 2 3.8 Other health care providers 8 15.4 Family or friends 9 17.3 Internet (search engines, social media, etc.) 14 26.9 Other special needs parents 1 1.9 Magnolia Park UF [Health]* 1 1.9 Facebook groups* 1 1.9 All of the above. Also conferences* 1 1.9 National & regional associations* 1 1.9 denotes a write in answer
HEALTH LITERACY & FAMILIES OF CSHCN 26 Table 2. Q5 : you ask FIRST? Preferred source of info N % Their doctors 36 66.7 Their nurses 2 3.7 Other health care providers 6 11.1 Family or friends 4 7.4 Internet 6 11.1 Table 3 Q9 : If English is not your primary language, does your health care provider offer you materials or resources in your primary language? Language Preferences N % Yes 9 16.7 No 0 0 Sometimes 0 0 English is my primary language 44 81.5 Not Applicable 1 1.9
HEALTH LITERACY & FAMILIES OF CSHCN 27 Appendix B Handout for Providers Tips For Improving Communication Between Provider And Patient Ask open ended questions. Utilize the teach back method for oral instructions. Use the show back method when demonstrating techniques or medical equipment. Always speak with respect. Practice active listening habits. Use pictures & images to supplement verbal communication. Use simple language without patronizing. Provi de health information in multiple forms verbal, written, pictures. Create clear and simple action plans. Use patient decision aids. Put numbers in terms of real life Speak directly to your young patients whenever possible. Be aware of the need for childr en to develop health literacy. Red Flags for Low Literacy in Patients/Clients Frequently missed appointments Incomplete registration forms Non compliance with medication Unable to name medications, explain purpose or dosing Identifies pills by looking at them, not reading label Unable to give coherent, sequential history Asks fewer questions Lack of follow through on tests or referrals Resources: CDC: Health Literacy Evidence Reviews & Research Summaries https://www.cdc.gov/healthliteracy/researchevaluate/evidence research.html Institute for Healthcare Improvement: 8 Ways to Improve Health Literacy http://www.ihi.org/communities/blogs/8 ways to improve health literacy AAP: Health Literacy & Pediatrics. http://www.aappublications.org/news/2016/06/08/health literacy and pediatric care pediatrics 0616 IHI/NPSF: Ask Me 3 for Healthcare Professionals. http://www. npsf.org/page/askme3
HEALTH LITERACY & FAMILIES OF CSHCN 28 Appendix C Presentation Plan Name: Sherri Cook Goal: To explain the concept and importance of health literacy (HL) to families of children with special health care needs (CSHCN) Presentation Title: Health Literacy: I Hear You Theory: Ecological Perspective Learning Context: Health Literacy and its importance Adults with chronic health care needs, families/caregivers of CSHCN, professionals who work with CSHCN and their families 16 65 years old Diverse race and ethnicity Various knowledge and behavior level 5 30 participants 60 minutes Family Caf special needs conference Learning Objectives: By the end of the presentation, participants will be able to: 1) Explain what health literacy means in 1 2 sentences 2) Identify 2 important benefits of improved health literacy 3) Distinguish between reading literacy and health literacy 4) Name one specific health literacy skill 5) Recognize how increased health literacy helps families/caregivers of CSHCN 6) Demonstrate the Ask Me 3 method of health communications 7) Name one way to advocate for HL Methods: Lecture PowerPoint (See Attached PowerPoint file) Activity #1 Interpret Minionese instructions Activity #2 Translate Malaysian medicine bottle image Activity #3 Activity #4 Understanding prescription sun exposure warning Activity #5 Compare government and commercial health websites Activity #6 Watch Ask Me 3 video Handouts Provider handout (at tached), Ask Me 3 handout from IHI/NPSF Discussion
HEALTH LITERACY & FAMILIES OF CSHCN 29 Introduction: [Slide 1] Hello, my name is [Sherri Cook]. I am here today to talk with you about health literacy Let me tell you a little bit about myself. [Insert personal information and background. -I raised a child with special health care needs, who is now an adult with special health care needs. She is now raising her own child with special health care needs.] Now, let me get to know you a little bit How many of you are here for your child? Adult child or other family member? How many of you are here for yourself? How many of you are here in a professional capacity? [Slide 2] Words can sound garbled. It is hard to understand what the other person is saying. Patients and Caregivers through a closed door? Do you f eel like you understand everything healthcare providers say to [Pause] It might happen once in a while or it might happen every time you see a healthcare provider. Healthcare Providers : Do you feel like you communicate effectively with your patients? [Pause] Are there communication barriers between you and your patients? [Pause] We are going to talk about how to open the doors to better health information.
HEALTH LITERACY & FAMILIES OF CSHCN 30 Develop mental Section: Content Method/Strategy Est. Time Materials Needed Objectives 1. What is health literacy? Lecture, slides 10 min PowerPoint Projector/Screen Handout 1,3,4 2. Why does HL matter? Lecture, slides 5 min. PowerPoint Projector/screen 2 3. Discuss various skills of HL Lecture, Slides, Activities 10 min PowerPoint Projector/Screen 3,4 4. How does HL impact CSHCN & their families? Lecture Activity 5 min. PowerPoint Projector/Screen 5 5. Discuss ways to improve personal/patient HL Lecture 10 min. PowerPoint Projector/Screen 4 5. Present Ask Me 3 program Lecture Video 10 min. PowerPoint Projector/Screen Handouts 6 6. Call to action Lecture Discussion 5 min. PowerPoint Projector/Screen Handouts 7 7. Conclusion and Evaluation Written evaluation 5 min. Evaluation forms Pencils