- Email: [email protected]
Spanish mHealth Resource
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PLAIN LANGUAGE AND HEALTH LITERACY FOR THE ONCOLOGY FAMILY CAREGIVER: EXAMINING AN ENGLISH/SPANISH MHEALTH RESOURCE JOY GOLDSMITH, AMANDA J. YOUNG, LISA DALE, AND M. PAIGE POWELL OBJECTIVES: To explore an mHealth resource to support the limited-Englishproficient cancer family caregiver.
DATA SOURCES: Structured interviews with oncology clinic providers to assess a nurse-delivered resource to support health literacy and decision-making along the cancer trajectory.
CONCLUSION: Limitations in communicating about oncology care with limitedEnglish caregivers is evident. The mHealth resource examined here shows promise to improve relational health literacy between the oncology nurse and family caregiver.
IMPLICATIONS
FOR NURSING PRACTICE: Communicating with limited-Englishproficient family caregivers invites oncology nurses to seek out resources to create shared understanding.
KEY WORDS: plain language, health literacy, family caregiver, mHealth.
Joy Goldsmith, PhD: Associate Professor of CommuAddress correspondence to Joy Goldsmith, PhD, nication, Department of Communications, University University of Memphis, Department of Communication, of Memphis, Memphis, TN. Amanda J. Young, PhD: AsArt and Communication Building, Room 235, Memphis, sociate Professor of Communication, University of TN 38152. e-mail: [email protected] Memphis, Memphis, TN. Lisa Dale, RN, MS: Department of Communication, University © 2017 Elsevier Inc. All rights reserved. of Memphis, Memphis, TN. M. Paige Powell, PhD: As0749-2081 sistant Professor, Division of Health Systems, https://doi.org/10.1016/j.soncn.2017.09.008 Management, and Policy, School of Public Health, University of Memphis, Memphis, TN.
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ealth systems rely on family caregivers (FCGs) to provide 80% of care that patients receive, managing adverse effects from disease and treatment in chronically and acutely ill cancer patients.1 Despite the demand for these high-level caregiving skills, FCGs often are unprepared and unable to navigate progressing disease.2 Latinos provide more care3 and report worse personal health than white FCGs.4,5 This disparity is of particular concern because cancer caregiving among minority populations is predicted to rise 99% by 2050.6 FCG health literacy is impacted by language, 7 limited English proficiency (LEP),8,9 use of translators, lack of available educational materials in languages other than English, monolingual materials in Spanish,9 health care system resources, and provider preparation.10 Despite mounting evidence about the importance of health literacy, health care systems, providers, and recipients lack informed communication resources and interventions that will improve health literacy and outcomes for all stakeholders. The Plain Writing Act of 2010, the Department of Health and Human Services, and Culturally and Linguistically Appropriate Services standards for written and spoken communication mandate that all US healthcare systems develop and employ understandable communication, leaving the nurse, in many cases, to translate medical terms and procedures for FCGs and patients. As FCGs navigate the cancer trajectory, they rely on nurses for health information and decision-making processes because health information shared between patients and caregivers is less reliable.11,12 A nurse’s communication incorporates the significant challenge of caring, as well as to strive for a shared understanding of health information/recommendations. 13 Additionally, the communication a nurse shares with caregivers is considered instrumental in establishing and promoting caregiver quality of life.14
HEALTH LITERACY AND PLAIN LANGUAGE FCGs are challenged to coordinate medications among multiple providers across care settings while coping with the amalgamation of new prescriptions within existing routines.15 Health literacy difficulties in symptom management include the use of abbreviations, correctly dosing medications with similar sounding names, adhering to daily dose amounts, and use of a wide variety of medicine delivery pathways. 15 For caregivers, a lack of
understanding about medications and side effects complicates the control of symptoms and side effects at home.15 For patients, analgesic medication inaccuracies are more likely when caregiver understanding is limited.16 Oral communication between provider and caregiver can facilitate understanding and increase preparedness in managing symptoms and side effects. According to the US National Library of Medicine, health information should be no higher than a 6th to 7th grade reading level.17 Using plain language when communicating with patients and families has been recommended as an important component of provider education and training to address health literacy demands and disparities in care.18 In line with the Department of Health and Human Services and the Federal Plain Language Guidelines,19 six plain language index categories developed by Kaphingst et al.20 guide the assessment, analysis, and creation of healthrelated materials/communication: (1) reading level; 6th grade or below; (2) active voice (take this twice a day); (3) second person (you, yours); (4) use of jargon (emesis vs. throwing up); (5) brief sentences (15 words or less); and (6) easy-tounderstand phrasing. Plain language is an even greater need for caregivers who are operating with LEP. The US Census Bureau reports that 66 million Americans speak a language other than English, and nearly half of that group speaks English less than very well. This group has LEP.21 Care challenges unique to Spanishspeaking LEP caregivers include difficulty in understanding clinical trial information and a delay in seeking medical support over concerns related to immigration status for a member of the household.22 Nurse communication that addresses care adherence and accuracies is more challenging to attain when counseling Spanish-speaking LEP caregivers.23 The US Preventive Services Task Force, National Cancer Institute, and the Committee on Improving the Quality of Cancer Care (Institute of Medicine) all advocate for the use of shared decisionmaking tools among providers, patients, and their caregivers for cancer screening and treatment decisions.24 Caregivers may not participate actively in treatment decisions because of the emotional toll of the disease, lack of education or low health literacy, or information overload. Providers may also be ill-equipped to empower patients and caregivers to participate in shared decision-making and may have cultural differences that impede
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communication.24 However, with the explosion of apps to support oncology communication,25 there are new opportunities to facilitate shared decisionmaking among all stakeholders.
DEVELOPMENT OF THE ENGLISH/SPANISH PLAIN LANGUAGE PLANNER RESOURCE The COMFORT communication curriculum is a training program developed for teaching patientcentered communication.26 The curriculum is driven by evidence and theory born of the communication studies discipline. Creators of the COMFORT curriculum transferred plain language and patient/ family-centered elements of COMFORT into a mobile application, intended for provider use in oncology and palliative care settings. The Health Communication App was initially launched in 2013 and has undergone four revisions. One section of the app includes The Plain Language Planner for Palliative Care (PLP), a tool for communicating about oncology, palliative care, and cancer treatment side effects in plain language at the 6th grade level. This portion of the app was originally created by two health communication researchers (COMFORT coauthors), with support from a palliative care symptom expert and COMFORT contributor and faculty collaborator. It is the PLP portion of the mHealth tool under study in this article. Previous research on the PLP focused on provider use and usability; studies revealed that using the tool results in a decreased use of jargon by nurses27 and offers assistance to providers in communicating clearly and engaging essential topics in oncology.28 Responses from both of these studies prompted the inclusion of Spanish in plain language for the provider as the Hispanic populations in cancer care increases, with inadequate interpreter resources for patient and caregiver education. Generating content in Spanish included a threestep process. In 2015, the Spanish plain language addition was initially created by two Spanish language instructors for all three sections of the PLP: (1) Palliative Care Medications, (2) Oncology Terms, and (3) Oncology Treatment Side Effects. These translations were then tested to ensure 6th grade level readability using the Lexile Analyzer for Spanish, confirming comparable access and ease with the English PLP content. Finally, three COMFORT team members with Spanish fluency
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represented three additional dialect perspectives (Spain, Columbia, Mexico). They reviewed the content and suggested final alterations to achieve conversational and accessible content (see Fig. 1). As this revision to the APP was in process, an opportunity to share the PLP with FCGs prompted us to consider the possibility that FCGs (1) may find utility with this resource and that (2) the possibility of shared browsing with a provider might prove to be a powerfully co-created exchange between nurse and FCG. The purpose of this study was to explore the utility and health literacy potential of an mhealth resource for integration into oncology care, specifically to support the LES FCG.
METHOD Structured interviews with oncology clinic providers were conducted. The sponsoring institution granted IRB approval for this project. Over a period of 4 weeks, structured interviews were conducted with 19 providers at an outpatient cancer center clinic accredited by the National Comprehensive Cancer Network. A member of the research team, who is also a nurse, used convenience sampling to orient and include participants in the project. She engaged in face-to-face conversations about the project in a meeting room near four nursing stations. Providers met with her one-on-one for a period of 10 to 20 minutes to complete their participation in the project. On-duty providers volunteered to participate. First, using an iPad Pro, our nurse researcher demonstrated the PLP via browsing and then invited the provider to independently browse the app for 3 to 5 minutes. Next, she verbally collected and recorded demographic data. The final step was an eight-question interview. The nurse researcher verbally asked the questions and then entered the responses verbatim that exacted participants’ narrative answers. The first two authors analyzed interview responses using an iterative process of thematizing.29 First, each researcher studied the data independently and used open coding to identify responses that suggested a possible theme. In this first stage, initial theme interpretations are proposed, but connections to other themes are not explored. Second, the two researchers then met to identify, sort, and integrate themes that had been independently identified. A process of constant comparison allowed for the integration and collapsing of themes into
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Plain Language Oncology Terms in English and Spanish
Plain Language Treatment Side Effects in English and Spanish
FIGURE 1. English and Spanish oncology terms and treatment side effects from the mHealth tool.
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broader associated categories.29 Subthemes emergent under larger categories were identified and noted at this stage. Third, the interview transcripts were re-reviewed, and key categories were refined. All four researchers evaluated the process and categories of data and collectively clarified the interpretive claims about the categories identified.
RESULTS Of the 19 providers who participated in the interview, 17 were oncology nurses, one was a pediatric oncologist, and one an oncology pharmacist. All providers were white females who spoke only English. About half the providers were aged 31 to 40 or 41 to 50 (47.4%) years old with 1 to 5 years of experience (47.4%) as a cancer provider, though nearly half of the sample had worked in cancer care longer than 6 years. Providers estimated that a significant percentage of caregivers of their patients were minorities, with twelve reporting that more than 50% of their patients were minorities.
LEP FAMILY CAREGIVER Participant responses described the strategies they used to communicate with LEP caregivers, as well as the communication behaviors of those LEP caregivers: provider strategies and observed caregiver communication. For example, almost all providers described tools they relied on to achieve understanding with LEP caregivers. Many said they used a translator or interpreter and cited various communication modalities, including colleagues, professional face-to-face interpreters, phone interpreters, and family interpreters. Visual literacy strategies were described (ie, “I draw,” “We use demonstrations”), in addition to checking efforts (ie, “I’ll ask if they understand”). Participants also described observed behaviors and communication efforts from the LEP caregiver. Central among these were covering strategy; interactions that undermine health literacy, but are compelled by cultural and language differences. Covering strategies included verbal and nonverbal feigned understanding, the absence of questions (follow-up or newly initiated), and blanket agreement. All of these strategies were perceived as revealing a deficit of shared understanding between the provider and caregiver. For example, one par-
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ticipant described the experience of communicating with limited-proficiency English-speaking caregivers: “These people tend not to seek out more than basic information from staff. They also tend to want to say what they think we want to hear. They say they understand and they don’t.” The emotional responses of fear and frustration were commonly observed by providers. Fear and its connection to covering strategies were frequently related to one another in descriptions of caregivers navigating the challenge of new information about cancer, medicine, and side effects. Several participants talked about the problem of family members translating information for the caregiver and patient. One salient comment illustrates the potential danger in using family interpreters: “Then a family member, who can be as young as elementary school and is often an adolescent, translates it into Spanish. Information is lost” (see Table 1).
RELATIONAL HEALTH LITERACY Providers identified strategies for improving relational health literacy with LEP FCGs. Discussing treatment and care with the LEP caregiver earlier in the cancer journey, integrating a resource (the PLP or something like it) with the caregiver and returning to it in times of care transition, and relying on a resource to provide another set of words to explain a new or difficult idea were commonly described. Several providers specified using a tool like the PLP because it enabled having a handheld or quick tool to use without having to go through someone else. One provider said that she would use the PLP at diagnosis and then “remind the caregiver of this tool in times of transition.” Another said, “during teaching we could utilize this and show them how to use the app and have it in Spanish while going over the medications and side effects.” Table 2 summarizes ways to enhance relational health literacy using the PLP.
RESOURCE UTILITY Providers offered ideas about what elements they would like to see added to the resource, as well as design and browsing feedback. Several participants described PLP content additions to enhance the caregiver’s understanding. The inclusion of more information about specific groups of patients (ie,
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TABLE 1. Communication Behaviors of Limited English Proficiency Family Caregivers Covering strategies Verbal Nonverbal Absence of questions Agreeing
They also tend to want to say what they think we want to hear. They say they understand and they don’t. They tend to not ask questions and just nod even if they might not understand. Sometimes they don’t know what questions to ask. They go along with care even if they don’t understand.
Emotional responses They are scared Frustration, increased emotions, feeling lost Family translators They tend to ask family members; family may be young, like in elementary school; it makes it difficult. I never know what is being shared if a family member starts translating.
pediatrics, lung cancer), of medicines and the side effects of treatment and medications, and links to other credible sites were discussed (“including chemotherapy and biotherapy drugs would be extremely helpful to our patients and family”). Improvements suggested focused on the features and labeling of the PLP content. Suggestions were made about the headings/language identifying the three sections of the resource to engage the FCG rather than headings that might appeal to a provider. The browsing patterns were critiqued as well, with some challenges noted in getting back to the landing page. The most common suggestions addressed language difference and the need
TABLE 2. Provider Identified Ways to Enhance Relational Health Literacy Using the Plain Language Planner (PLP) • More teaching tools in other languages and more readily available translators. • Learn key words in other languages, pictures, and written information for patients. • Having more resources in Spanish, such as medication information, side effect management. • The PLP would be a great tool for patients to be able to communicate their side effects. • Introduce it early in the process and remind caregivers of this tool in times of transition. • I would introduce it, physically, so they can see how easy. • It would help me explain problems and possible solutions better. • During teaching we could utilize this and show them how to use the app and have it in Spanish while going over the medications and side effects.
for more translated terms in more languages. One nurse suggested “a free text area to translate items that aren’t addressed in the app or a way to help them” (the caregiver). A search feature was also commonly identified as an option that could allow caregiver and provider to tailor use of the resource more specifically to immediate needs and challenges. Table 3 shows suggested improvements identified for the PLP.
DISCUSSION AND IMPLICATIONS FOR RESEARCH AND CLINICAL PRACTICE The nature of the clinical setting for this study includes providers who see many of the same patient/family groups repeatedly over an extended time period. The urban location in which the cancer clinic is located is known to have a significant minority population and a rising number of Latino
TABLE 3. Improvements Suggested to the PLP mHealth App • Including chemotherapy and biotherapy drugs would be extremely helpful to our patients and caregivers. • List other resources/sites (reputable). • Version for pediatric cancer. • Language options: they read their language and it translates to providers in the provider language. • Use a search key to pull up related topics. • A free text area to translate items that aren’t addressed in the app.
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patients. A challenge for this urban setting in cancer care is that advanced disease is common at diagnosis, and cancer care disparities are some of the highest in the country. All nurses in this study spoke English, and no other language. This is not unlike other oncology clinical settings in this part of the country, which underscores the challenge of the provider in caring for the LEP caregiver (and patient). Providers similarly described the tactics and resources they used to communicate health information and care plans to LEP caregivers, which included translation/ interpreter services (when available), visual health literacy strategies, and demonstrations. Providers readily identified covering strategies used by caregivers when they were not understanding the communication about health information and care plans, including feigned understanding, silence, and agreement. Emotional responses including fear and frustration were related to caregiver covering strategies. Providers also identified the common use of family translators, who are often minors. Providers described ways to construct meaning through communication to achieve better health literacy for caregivers; innate in these descriptions was the recognition of their own need for improved health literacy specific to the context of that caregiver and the barriers of LEP. Providers identified themselves as a pathway to improve health literacy by noting the increased need to rely on translation, recognizing language and cultural barriers as they occur, and seeking out more bilingual materials to improve understanding. Notably, providers included solution ideas that involved working together with the caregiver on resources (synchronous), as well as sharing resources that could be used asynchronously when they were not together. The mHealth resource under examination in this project received positive assessments as a tool that providers and FCGs can share when together and apart. The strength of the PLP, according to providers, was the bilingual plain language content that could be toggled back and forth when sharing information about medications, side effects, and cancer. Suggestions for improving the PLP included additions to information access on the app as well as linking the app to other resources, adding features to allow a more tailored health literacy experience (ie, types of cancer, search access), and some alterations to improve and clarify the browsing experience. Research has established that FCGs regularly attend oncology appointments, providing and re-
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ceiving information from providers, administering day-to-day care, and influencing treatment decisions.11 Communication about treatment side effects, symptoms, and pain often involves family members, providing an opportunity for nurses and other providers to orient family members to a patient’s condition and educate them about medication and side effects. The complexities of language and cultural difference can seem impenetrable for nurses and health care teams pursuing the best care and goal planning for oncology patients. Further examination of bilingual mHealth resources for synchronous and asynchronous use among care stakeholders is needed. The current range of “‘mobile health’” or “‘mHealth’” applications is impressive, spanning care delivery, monitoring, diagnostics, training, and more.30 This particular study is part of a larger effort to incorporate communication resources founded on the principles of plain language and co-created, transacted health literacy. Unique to this resource is its bilingual facility and ease for provider and caregiver use. The Health Information Management Systems Society’s 2014 study on mobile device analytics reported that device usage proliferated, and that clinicians tend to view mHealth tools positively. Providers indicate that future technologies will have a positive impact on their communication with other clinicians and patients. 31 The proliferation of unified communication systems and device integration from care delivery to patient support is indicative of the promise mHealth resources hold for all health stakeholders, especially oncology caregivers. Although many randomized controlled trials have examined the role of decision aids for cancer patients, very few have tested the use of decision aids for cancer caregivers.32 Future examination of this and other mHealth resources should examine their benefit to caregiver outcomes, as well as the impact on patient symptom, pain, and side-effect management at home. Models exploring oral health literacy,33 plain language use and understanding,34 as well as numeracy demands35 are exciting additions to the growing number of applied examinations that are meant to improve the quality of care for patients and their family. Emergent in the research and literature on the matter of health literacy is a growing awareness that readability is not equivalent to conceptual understanding, and that associations between educational levels and health literacy levels do little to solve the deepening challenges of shared understanding among providers and caregivers.36 Going
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forward, the tools and strategies that have linked health literacy and poor health outcomes can be leveraged toward a translational co-constructed approach among stakeholders – with the shared goal of making meaning to facilitate a better journey in
cancer care. The Health Communication App, which houses the Spanish/English resource described here, can be accessed for free at https:// itunes.apple.com/us/app/health-communication/ id697289957?mt=8.37
REFERENCES 1. Family Caregiver Alliance. Selected long-term care statistics; 2017. https://www.caregiver.org/selected-long-term-carestatistics. Accessed January 6, 2017. 2. Schumacher KL, Stewart BJ, Archbold PG, Caparro M, Mutale F, Agrawal S. Effects of caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer treatment. Oncol Nurs Forum. 2008;35:49-56. 3. McCann JJ, Hebert LE, Beckett LA, Morris MC, Scherr PA, Evans DA. Comparison of informal caregiving by black and white older adults in a community population. J Am Geriatr Soc. 2000;48:1612-1617. 4. Pinquart M, Sorenson S. Ethnic differences in stressors, resources, and psychological outocmes of family caregiving: a meta-analysis. Gerontologist. 2005;45:90-106. 5. Myers Virtue S, Manne SL, Mee L, et al. Psychological distress and psychitric diagnoses among primary caregivers of children undergoing hematopoetic stem cell transplant: an examination of prevalence, correlates, and racial/ethnic differences. Gen Hosp Psychiatry. 2014;36:620-626. 6. Weiss T, Weinberger M, Holland J, Nelson C, Moadel A. Falling through the cracks: a review of psychological distress and psychosocial service needs in older black and Hispanic patients with cancer. J Geriatr Oncol. 2012;3:163-173. 7. Mead EL, Doorenbos AZ, Javid SH, et al. Shared decisionmaking for cancer care among racial and ethnic minorities: a systematic review. Am J Public Health. 2013;103:e15-e29. 8. Campesino M, Saenz DS, Choi M, Krouse RS. Perceived discrimination and ethnic identity among breast cancer survivors. Oncol Nurs Forum. 2012;39:E91-E100. 9. Costas-Muniz R, Sen R, Leng J, Aragones A, Ramirez J, Gany F. Cancer stage knowledge and desire for information: mismatch in Latino cancer patients. J Cancer Educ. 2013;28:458465. 10. Yuen EY, Dodson S, Batterham RW, Knight T, Chirgwin J, Livingston PM. Development of a conceptual model of cancer caregiver health literacy. Eur J Cancer Care (Engl). 2016;25:294306. 11. Bevan JL, Pecchioni LL. Understanding the impact of family caregiver cancer literacy on patient health outcomes. Patient Educ Counsel. 2008;71:356-364. 12. Koutsopoulou S, Papathanassoglou ED, Katapodi MC, Patiraki EI. A critical review of the evidence for nurses as information providers to cancer patients. J Clin Nurs. 2010;19:749765. 13. Brataas HV, Thorsnes SL, Hargie O. Themes and goals in cancer outpatient-cancer nurse consultations. Eur J Cancer Care (Engl). 2010;19:184-191. 14. Tamayo GJ, Broxson A, Munsell M, Cohen MZ. Caring for the caregiver. Oncol Nurs Forum. 2010;37:E50-E57. 15. Schumacher K, Plano Clark VL, West CM, Dodd MJ, Rabow MW, Miaskowski C. Pain medication management processes used by oncology outpatients and family caregivers part II: home and lifestyle contexts. J Pain Symptom Manage. 2014;48:784-796.
16. Mayahara M, Foreman MD, Wilbur J, Paice JA, Fogg LF. Effect of hospice nonprofessional caregiver barriers to pain management on adherence to analgesic administration recommendations and patient outcomes. Pain Manag Nurs. 2015;16:249-256. 17. US National Library of Medicine. How to write easy-toread health materials; 2014. http://www.nlm.nih.gov/medlineplus/ etr.html. Accessed January 8, 2017. 18. Nouri SS, Rudd RE. Health literacy in the “oral exchange”: an important element of patient-provider communication. Patient Educ Couns. 2015;98:565-571. 19. US Federal Drug Administration. Federal plain language guidelines. Washington, DC: US Food and Drug Administration; 2011. 20. Kaphingst KA, Kreuter MW, Casey C, et al. Health literacy INDEX: development, reliability, and validity of a new tool for evaluating the health literacy demands of health information materials. J Health Commun. 2012;17(suppl 3):203221. 21. US Census Bureau. Detailed languages spoken at home and ability to speak English for the population 5 years and over: 2009–2013; 2013. https://www.census.gov/data/tables/2013/ demo/2009-2013-lang-tables.html. Accessed January 11, 2017. 22. Zamora E, Kaul S, Kirchhoff A, et al. The impact of language barriers and immigration status on care experience for Spanish-spaking caregivers of patients with pediatric cancer. Pediatr Blood Cancer. 2016;63:2173-2180. 23. Napoles A, Santoyo-Olsson J, Karliner L, Gregorich S, Perez-Stable E. Innaccurate language interpretation and its clinical significance in the medical encounters of Spanish-speaking Latinos. Med Care. 2015;53:940-947. 24. Levit L, Balogh E, Nass S, Ganz P. Delivering highquality cancer care: charting a new course for sciences. National Academy of Sciences. Washington, DC; 2013. 25. Doyle-Lindrud S. Mobile health technology and the use of health-related mobile applications. Clin J Oncol Nurs. 2014;18:634-636. 26. Wittenberg Lyles E, Goldsmith J, Ferrell B, Ragan SL. Communication in Palliative Nursing. New York: Oxford University Press; 2012. 27. Wittenberg E, Goldsmith J, Ferrell B, Platt CS. Enhancing communication related to symptom management through plain language: a brief report. J Pain Symptom Manage. 2015;50:707-711. 28. Goldsmith J, Wittenberg E, Ferrell B. An APP to support difficult interactions among provider, patient, and family. J Adv Pract Oncol. 2015;6:481-482. 29. Glaser B, Strauss A. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine; 1967. 30. Kumar S, Nilsen W, Pavel M, Srivastava M. Mobile health: revolutionizing healthcare through transdisciplinary research. Computer. 2013;46:28-35.
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31. Healthcare Information Management Systems Society. HIMSS analytics mobile devices study. Washington, DC; 2014. 32. Austin C, Mohottige D, Sudore R, Smith A, Hanson L. Tools to promote shared decision making in serious illness: a systematic review. JAMA Intern Med. 2015;175:1213-1221. 33. Baker D. The meaning and the measure of health literacy. J Gen Intern Med. 2006;21:878-883. 34. McNeil A, Arena R. The evolution of health literacy and communication: introducing health harmonics. Prog Cardiovasc Dis. 2017;59:463-470.
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35. Apter A. Numeracy in health care: a clinician’s perspective. Paper presented at the Institute of Medicine Workshop on Health LIteracy and Numeracy, July 18, 2013, Washington, DC; 2013. 36. Weaver N, Wray R, Zellin S, Gautam K, Jupka K. Advancing organization health literacy in health organizations serving high-needs populations: a case study. J Health Commun. 2012;17:55-66. 37. The Comfort Communication Project. The plain langauge planner for palliative care and oncology; 2017. www.communicatecomfort.com/resources.
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PLAIN LANGUAGE AND HEALTH LITERACY FOR THE ONCOLOGY FAMILY CAREGIVER: EXAMINING AN ENGLISH/SPANISH MHEALTH RESOURCE JOY GOLDSMITH, AMANDA J. YOUNG, LISA DALE, AND M. PAIGE POWELL OBJECTIVES: To explore an mHealth resource to support the limited-Englishproficient cancer family caregiver.
DATA SOURCES: Structured interviews with oncology clinic providers to assess a nurse-delivered resource to support health literacy and decision-making along the cancer trajectory.
CONCLUSION: Limitations in communicating about oncology care with limitedEnglish caregivers is evident. The mHealth resource examined here shows promise to improve relational health literacy between the oncology nurse and family caregiver.
IMPLICATIONS
FOR NURSING PRACTICE: Communicating with limited-Englishproficient family caregivers invites oncology nurses to seek out resources to create shared understanding.
KEY WORDS: plain language, health literacy, family caregiver, mHealth.
Joy Goldsmith, PhD: Associate Professor of CommuAddress correspondence to Joy Goldsmith, PhD, nication, Department of Communications, University University of Memphis, Department of Communication, of Memphis, Memphis, TN. Amanda J. Young, PhD: AsArt and Communication Building, Room 235, Memphis, sociate Professor of Communication, University of TN 38152. e-mail: [email protected] Memphis, Memphis, TN. Lisa Dale, RN, MS: Department of Communication, University © 2017 Elsevier Inc. All rights reserved. of Memphis, Memphis, TN. M. Paige Powell, PhD: As0749-2081 sistant Professor, Division of Health Systems, https://doi.org/10.1016/j.soncn.2017.09.008 Management, and Policy, School of Public Health, University of Memphis, Memphis, TN.
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ealth systems rely on family caregivers (FCGs) to provide 80% of care that patients receive, managing adverse effects from disease and treatment in chronically and acutely ill cancer patients.1 Despite the demand for these high-level caregiving skills, FCGs often are unprepared and unable to navigate progressing disease.2 Latinos provide more care3 and report worse personal health than white FCGs.4,5 This disparity is of particular concern because cancer caregiving among minority populations is predicted to rise 99% by 2050.6 FCG health literacy is impacted by language, 7 limited English proficiency (LEP),8,9 use of translators, lack of available educational materials in languages other than English, monolingual materials in Spanish,9 health care system resources, and provider preparation.10 Despite mounting evidence about the importance of health literacy, health care systems, providers, and recipients lack informed communication resources and interventions that will improve health literacy and outcomes for all stakeholders. The Plain Writing Act of 2010, the Department of Health and Human Services, and Culturally and Linguistically Appropriate Services standards for written and spoken communication mandate that all US healthcare systems develop and employ understandable communication, leaving the nurse, in many cases, to translate medical terms and procedures for FCGs and patients. As FCGs navigate the cancer trajectory, they rely on nurses for health information and decision-making processes because health information shared between patients and caregivers is less reliable.11,12 A nurse’s communication incorporates the significant challenge of caring, as well as to strive for a shared understanding of health information/recommendations. 13 Additionally, the communication a nurse shares with caregivers is considered instrumental in establishing and promoting caregiver quality of life.14
HEALTH LITERACY AND PLAIN LANGUAGE FCGs are challenged to coordinate medications among multiple providers across care settings while coping with the amalgamation of new prescriptions within existing routines.15 Health literacy difficulties in symptom management include the use of abbreviations, correctly dosing medications with similar sounding names, adhering to daily dose amounts, and use of a wide variety of medicine delivery pathways. 15 For caregivers, a lack of
understanding about medications and side effects complicates the control of symptoms and side effects at home.15 For patients, analgesic medication inaccuracies are more likely when caregiver understanding is limited.16 Oral communication between provider and caregiver can facilitate understanding and increase preparedness in managing symptoms and side effects. According to the US National Library of Medicine, health information should be no higher than a 6th to 7th grade reading level.17 Using plain language when communicating with patients and families has been recommended as an important component of provider education and training to address health literacy demands and disparities in care.18 In line with the Department of Health and Human Services and the Federal Plain Language Guidelines,19 six plain language index categories developed by Kaphingst et al.20 guide the assessment, analysis, and creation of healthrelated materials/communication: (1) reading level; 6th grade or below; (2) active voice (take this twice a day); (3) second person (you, yours); (4) use of jargon (emesis vs. throwing up); (5) brief sentences (15 words or less); and (6) easy-tounderstand phrasing. Plain language is an even greater need for caregivers who are operating with LEP. The US Census Bureau reports that 66 million Americans speak a language other than English, and nearly half of that group speaks English less than very well. This group has LEP.21 Care challenges unique to Spanishspeaking LEP caregivers include difficulty in understanding clinical trial information and a delay in seeking medical support over concerns related to immigration status for a member of the household.22 Nurse communication that addresses care adherence and accuracies is more challenging to attain when counseling Spanish-speaking LEP caregivers.23 The US Preventive Services Task Force, National Cancer Institute, and the Committee on Improving the Quality of Cancer Care (Institute of Medicine) all advocate for the use of shared decisionmaking tools among providers, patients, and their caregivers for cancer screening and treatment decisions.24 Caregivers may not participate actively in treatment decisions because of the emotional toll of the disease, lack of education or low health literacy, or information overload. Providers may also be ill-equipped to empower patients and caregivers to participate in shared decision-making and may have cultural differences that impede
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communication.24 However, with the explosion of apps to support oncology communication,25 there are new opportunities to facilitate shared decisionmaking among all stakeholders.
DEVELOPMENT OF THE ENGLISH/SPANISH PLAIN LANGUAGE PLANNER RESOURCE The COMFORT communication curriculum is a training program developed for teaching patientcentered communication.26 The curriculum is driven by evidence and theory born of the communication studies discipline. Creators of the COMFORT curriculum transferred plain language and patient/ family-centered elements of COMFORT into a mobile application, intended for provider use in oncology and palliative care settings. The Health Communication App was initially launched in 2013 and has undergone four revisions. One section of the app includes The Plain Language Planner for Palliative Care (PLP), a tool for communicating about oncology, palliative care, and cancer treatment side effects in plain language at the 6th grade level. This portion of the app was originally created by two health communication researchers (COMFORT coauthors), with support from a palliative care symptom expert and COMFORT contributor and faculty collaborator. It is the PLP portion of the mHealth tool under study in this article. Previous research on the PLP focused on provider use and usability; studies revealed that using the tool results in a decreased use of jargon by nurses27 and offers assistance to providers in communicating clearly and engaging essential topics in oncology.28 Responses from both of these studies prompted the inclusion of Spanish in plain language for the provider as the Hispanic populations in cancer care increases, with inadequate interpreter resources for patient and caregiver education. Generating content in Spanish included a threestep process. In 2015, the Spanish plain language addition was initially created by two Spanish language instructors for all three sections of the PLP: (1) Palliative Care Medications, (2) Oncology Terms, and (3) Oncology Treatment Side Effects. These translations were then tested to ensure 6th grade level readability using the Lexile Analyzer for Spanish, confirming comparable access and ease with the English PLP content. Finally, three COMFORT team members with Spanish fluency
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represented three additional dialect perspectives (Spain, Columbia, Mexico). They reviewed the content and suggested final alterations to achieve conversational and accessible content (see Fig. 1). As this revision to the APP was in process, an opportunity to share the PLP with FCGs prompted us to consider the possibility that FCGs (1) may find utility with this resource and that (2) the possibility of shared browsing with a provider might prove to be a powerfully co-created exchange between nurse and FCG. The purpose of this study was to explore the utility and health literacy potential of an mhealth resource for integration into oncology care, specifically to support the LES FCG.
METHOD Structured interviews with oncology clinic providers were conducted. The sponsoring institution granted IRB approval for this project. Over a period of 4 weeks, structured interviews were conducted with 19 providers at an outpatient cancer center clinic accredited by the National Comprehensive Cancer Network. A member of the research team, who is also a nurse, used convenience sampling to orient and include participants in the project. She engaged in face-to-face conversations about the project in a meeting room near four nursing stations. Providers met with her one-on-one for a period of 10 to 20 minutes to complete their participation in the project. On-duty providers volunteered to participate. First, using an iPad Pro, our nurse researcher demonstrated the PLP via browsing and then invited the provider to independently browse the app for 3 to 5 minutes. Next, she verbally collected and recorded demographic data. The final step was an eight-question interview. The nurse researcher verbally asked the questions and then entered the responses verbatim that exacted participants’ narrative answers. The first two authors analyzed interview responses using an iterative process of thematizing.29 First, each researcher studied the data independently and used open coding to identify responses that suggested a possible theme. In this first stage, initial theme interpretations are proposed, but connections to other themes are not explored. Second, the two researchers then met to identify, sort, and integrate themes that had been independently identified. A process of constant comparison allowed for the integration and collapsing of themes into
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Plain Language Oncology Terms in English and Spanish
Plain Language Treatment Side Effects in English and Spanish
FIGURE 1. English and Spanish oncology terms and treatment side effects from the mHealth tool.
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broader associated categories.29 Subthemes emergent under larger categories were identified and noted at this stage. Third, the interview transcripts were re-reviewed, and key categories were refined. All four researchers evaluated the process and categories of data and collectively clarified the interpretive claims about the categories identified.
RESULTS Of the 19 providers who participated in the interview, 17 were oncology nurses, one was a pediatric oncologist, and one an oncology pharmacist. All providers were white females who spoke only English. About half the providers were aged 31 to 40 or 41 to 50 (47.4%) years old with 1 to 5 years of experience (47.4%) as a cancer provider, though nearly half of the sample had worked in cancer care longer than 6 years. Providers estimated that a significant percentage of caregivers of their patients were minorities, with twelve reporting that more than 50% of their patients were minorities.
LEP FAMILY CAREGIVER Participant responses described the strategies they used to communicate with LEP caregivers, as well as the communication behaviors of those LEP caregivers: provider strategies and observed caregiver communication. For example, almost all providers described tools they relied on to achieve understanding with LEP caregivers. Many said they used a translator or interpreter and cited various communication modalities, including colleagues, professional face-to-face interpreters, phone interpreters, and family interpreters. Visual literacy strategies were described (ie, “I draw,” “We use demonstrations”), in addition to checking efforts (ie, “I’ll ask if they understand”). Participants also described observed behaviors and communication efforts from the LEP caregiver. Central among these were covering strategy; interactions that undermine health literacy, but are compelled by cultural and language differences. Covering strategies included verbal and nonverbal feigned understanding, the absence of questions (follow-up or newly initiated), and blanket agreement. All of these strategies were perceived as revealing a deficit of shared understanding between the provider and caregiver. For example, one par-
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ticipant described the experience of communicating with limited-proficiency English-speaking caregivers: “These people tend not to seek out more than basic information from staff. They also tend to want to say what they think we want to hear. They say they understand and they don’t.” The emotional responses of fear and frustration were commonly observed by providers. Fear and its connection to covering strategies were frequently related to one another in descriptions of caregivers navigating the challenge of new information about cancer, medicine, and side effects. Several participants talked about the problem of family members translating information for the caregiver and patient. One salient comment illustrates the potential danger in using family interpreters: “Then a family member, who can be as young as elementary school and is often an adolescent, translates it into Spanish. Information is lost” (see Table 1).
RELATIONAL HEALTH LITERACY Providers identified strategies for improving relational health literacy with LEP FCGs. Discussing treatment and care with the LEP caregiver earlier in the cancer journey, integrating a resource (the PLP or something like it) with the caregiver and returning to it in times of care transition, and relying on a resource to provide another set of words to explain a new or difficult idea were commonly described. Several providers specified using a tool like the PLP because it enabled having a handheld or quick tool to use without having to go through someone else. One provider said that she would use the PLP at diagnosis and then “remind the caregiver of this tool in times of transition.” Another said, “during teaching we could utilize this and show them how to use the app and have it in Spanish while going over the medications and side effects.” Table 2 summarizes ways to enhance relational health literacy using the PLP.
RESOURCE UTILITY Providers offered ideas about what elements they would like to see added to the resource, as well as design and browsing feedback. Several participants described PLP content additions to enhance the caregiver’s understanding. The inclusion of more information about specific groups of patients (ie,
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TABLE 1. Communication Behaviors of Limited English Proficiency Family Caregivers Covering strategies Verbal Nonverbal Absence of questions Agreeing
They also tend to want to say what they think we want to hear. They say they understand and they don’t. They tend to not ask questions and just nod even if they might not understand. Sometimes they don’t know what questions to ask. They go along with care even if they don’t understand.
Emotional responses They are scared Frustration, increased emotions, feeling lost Family translators They tend to ask family members; family may be young, like in elementary school; it makes it difficult. I never know what is being shared if a family member starts translating.
pediatrics, lung cancer), of medicines and the side effects of treatment and medications, and links to other credible sites were discussed (“including chemotherapy and biotherapy drugs would be extremely helpful to our patients and family”). Improvements suggested focused on the features and labeling of the PLP content. Suggestions were made about the headings/language identifying the three sections of the resource to engage the FCG rather than headings that might appeal to a provider. The browsing patterns were critiqued as well, with some challenges noted in getting back to the landing page. The most common suggestions addressed language difference and the need
TABLE 2. Provider Identified Ways to Enhance Relational Health Literacy Using the Plain Language Planner (PLP) • More teaching tools in other languages and more readily available translators. • Learn key words in other languages, pictures, and written information for patients. • Having more resources in Spanish, such as medication information, side effect management. • The PLP would be a great tool for patients to be able to communicate their side effects. • Introduce it early in the process and remind caregivers of this tool in times of transition. • I would introduce it, physically, so they can see how easy. • It would help me explain problems and possible solutions better. • During teaching we could utilize this and show them how to use the app and have it in Spanish while going over the medications and side effects.
for more translated terms in more languages. One nurse suggested “a free text area to translate items that aren’t addressed in the app or a way to help them” (the caregiver). A search feature was also commonly identified as an option that could allow caregiver and provider to tailor use of the resource more specifically to immediate needs and challenges. Table 3 shows suggested improvements identified for the PLP.
DISCUSSION AND IMPLICATIONS FOR RESEARCH AND CLINICAL PRACTICE The nature of the clinical setting for this study includes providers who see many of the same patient/family groups repeatedly over an extended time period. The urban location in which the cancer clinic is located is known to have a significant minority population and a rising number of Latino
TABLE 3. Improvements Suggested to the PLP mHealth App • Including chemotherapy and biotherapy drugs would be extremely helpful to our patients and caregivers. • List other resources/sites (reputable). • Version for pediatric cancer. • Language options: they read their language and it translates to providers in the provider language. • Use a search key to pull up related topics. • A free text area to translate items that aren’t addressed in the app.
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patients. A challenge for this urban setting in cancer care is that advanced disease is common at diagnosis, and cancer care disparities are some of the highest in the country. All nurses in this study spoke English, and no other language. This is not unlike other oncology clinical settings in this part of the country, which underscores the challenge of the provider in caring for the LEP caregiver (and patient). Providers similarly described the tactics and resources they used to communicate health information and care plans to LEP caregivers, which included translation/ interpreter services (when available), visual health literacy strategies, and demonstrations. Providers readily identified covering strategies used by caregivers when they were not understanding the communication about health information and care plans, including feigned understanding, silence, and agreement. Emotional responses including fear and frustration were related to caregiver covering strategies. Providers also identified the common use of family translators, who are often minors. Providers described ways to construct meaning through communication to achieve better health literacy for caregivers; innate in these descriptions was the recognition of their own need for improved health literacy specific to the context of that caregiver and the barriers of LEP. Providers identified themselves as a pathway to improve health literacy by noting the increased need to rely on translation, recognizing language and cultural barriers as they occur, and seeking out more bilingual materials to improve understanding. Notably, providers included solution ideas that involved working together with the caregiver on resources (synchronous), as well as sharing resources that could be used asynchronously when they were not together. The mHealth resource under examination in this project received positive assessments as a tool that providers and FCGs can share when together and apart. The strength of the PLP, according to providers, was the bilingual plain language content that could be toggled back and forth when sharing information about medications, side effects, and cancer. Suggestions for improving the PLP included additions to information access on the app as well as linking the app to other resources, adding features to allow a more tailored health literacy experience (ie, types of cancer, search access), and some alterations to improve and clarify the browsing experience. Research has established that FCGs regularly attend oncology appointments, providing and re-
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ceiving information from providers, administering day-to-day care, and influencing treatment decisions.11 Communication about treatment side effects, symptoms, and pain often involves family members, providing an opportunity for nurses and other providers to orient family members to a patient’s condition and educate them about medication and side effects. The complexities of language and cultural difference can seem impenetrable for nurses and health care teams pursuing the best care and goal planning for oncology patients. Further examination of bilingual mHealth resources for synchronous and asynchronous use among care stakeholders is needed. The current range of “‘mobile health’” or “‘mHealth’” applications is impressive, spanning care delivery, monitoring, diagnostics, training, and more.30 This particular study is part of a larger effort to incorporate communication resources founded on the principles of plain language and co-created, transacted health literacy. Unique to this resource is its bilingual facility and ease for provider and caregiver use. The Health Information Management Systems Society’s 2014 study on mobile device analytics reported that device usage proliferated, and that clinicians tend to view mHealth tools positively. Providers indicate that future technologies will have a positive impact on their communication with other clinicians and patients. 31 The proliferation of unified communication systems and device integration from care delivery to patient support is indicative of the promise mHealth resources hold for all health stakeholders, especially oncology caregivers. Although many randomized controlled trials have examined the role of decision aids for cancer patients, very few have tested the use of decision aids for cancer caregivers.32 Future examination of this and other mHealth resources should examine their benefit to caregiver outcomes, as well as the impact on patient symptom, pain, and side-effect management at home. Models exploring oral health literacy,33 plain language use and understanding,34 as well as numeracy demands35 are exciting additions to the growing number of applied examinations that are meant to improve the quality of care for patients and their family. Emergent in the research and literature on the matter of health literacy is a growing awareness that readability is not equivalent to conceptual understanding, and that associations between educational levels and health literacy levels do little to solve the deepening challenges of shared understanding among providers and caregivers.36 Going
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forward, the tools and strategies that have linked health literacy and poor health outcomes can be leveraged toward a translational co-constructed approach among stakeholders – with the shared goal of making meaning to facilitate a better journey in
cancer care. The Health Communication App, which houses the Spanish/English resource described here, can be accessed for free at https:// itunes.apple.com/us/app/health-communication/ id697289957?mt=8.37
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35. Apter A. Numeracy in health care: a clinician’s perspective. Paper presented at the Institute of Medicine Workshop on Health LIteracy and Numeracy, July 18, 2013, Washington, DC; 2013. 36. Weaver N, Wray R, Zellin S, Gautam K, Jupka K. Advancing organization health literacy in health organizations serving high-needs populations: a case study. J Health Commun. 2012;17:55-66. 37. The Comfort Communication Project. The plain langauge planner for palliative care and oncology; 2017. www.communicatecomfort.com/resources.