For further assistance in research as well as political, grant, and academic writing, please see Services.
My grandfather—“Pops” to his grandchildren—died in 1993 of pancreatic cancer. A robust, dyed-in-the-wool union man, he loved powdered doughnuts and telling stories of childhood adventures that would put a kid on Ritalin and other meds today. His final months consisted largely of doctor visits, hospital stays, surgery, and varying degrees pain and discomfort. The hardest part for him was the nephrostomy implant (“pee bag”) used for drainage when his cancer spread. He felt a certain loss of dignity, yet he remained stoic. While family gathered and tried every available means to prolong his life, Jack Baldwin prepared for death.
Americans don’t ever want to give up. We are fighters, and popular culture—from our favorite television talk show to dramatic film, a new call-in radio show to latest medical message board—tells the inspirational stories of those who fought and beat death. Yet death is ultimately inevitable. The victims of cancer and other terminal illnesses may fight to a point, but they often accept the reality of death long before their families are willing to do the same. Looking back, I admire what my family did for my grandfather. Yet, in the final months, he prepared emotionally, spiritually, and even financially for his death while the rest of us encouraged him to struggle for life. I cannot help but think that we left him feeling alone in his final days. In that regard, we failed him.
[Green Valley Hospice], a 501(c), nonprofit organization, contacted the Entrepreneurship Institute at the [Green Valley] Economic Development Center in August, 2009, asking that we conduct market research. [Green Valley Hospice] provides end-of-life planning and care for the terminally ill and their families. Several new hospices have moved into town in the past year, and [Green Valley Hospice] intends to retain if not expand its market share in Green County. In particular, their internal market team led by [Jane Smith] perceives a discrepancy between the ethnicity of the patient base they currently serve (28.4% Hispanic/Latino) (2009) and the total population of Hispanic/Latinos living in [Green] County today (64.8%) (2005-2008, U.S. Census Bureau Estimate). [Green Valley Hospice] is clearly not reaching this demographic despite numerous and costly efforts at outreach toward the Hispanic/Latino community. As a lead researcher in the project, I will propose empirical means, both qualitative and quantitative, intended to measure perceptions of hospice care and current marketing media presented by [Green Valley Hospice] among residents of Green County. In the course of this proposal, terms such as “potential clients” and “client base” may be used since, in fact, this research will serve the result of more effective marketing and public outreach. These are cold, emotionless, and impersonal terms; I feel it is important that we do not lose sight of the fact that these “clients” are terminally ill patients and their families, and that hospice provides comfort care, spiritual guidance, and planning for people at what may be the most difficult time in their lives.
Hospice care provides a unique and invaluable service to the terminally ill and their families. Yet large portions of the population remain averse to taking advantage of state- and federally-funded hospice care. Those who do take advantage often wait until it is too late in the dying patient’s life to gain full advantage of hospice services. Statistics provided by [Green Valley Hospice] mirror a trend seen in other research across the country: non-whites tend to be more reluctant regarding hospice care than do their white/Caucasian counterparts. Given that New Mexico is the first “minority as a majority” state (US Census Bureau, 2008), and that the population of [Green]County is over 64% Latino, finding the emotional and perceptional causes underlying this discrepancy is paramount to providing end-of-life care. For purposes of this study, research questions fall under three distinct categories:
1. What are the negative perceptions (or misperceptions) of hospice care that commonly lead to a disinclination toward services?
2. Are these negative perceptions common to a particular demographic based primarily on ethnicity, or are more basic correlations (such as income or level of education) at play?
3. Given that our research will provide relatively clear answers to 1 and 2, how might the content of current marketing or outreach media provided by [Green Valley Hospice] portray and impact potential hospice patients?
· Hospice/Hospice Care. Refers to services provided by hospices in general and [Green Valley Hospice] in particular. This includes both at-home care and care provided at the [Green Valley Hospice] campus. Services provided include medical (such as pain management), general nursing (provided by RNs, LPNs, and others both staff and volunteer), spiritual and emotional (provided by social workers, priests, pastors, and others as required), and general planning such as assistance in funeral arrangements or financial assistance including legal such as preparation of last will and testament.
· Palliative Care, End-of-Life Care, Comfort Care. Here, synonymous with Hospice/Hospice Care.
· Terminally Ill. Patients facing incurable, life-ending illness. Most commonly, cancer. The mean life expectancy for a terminally ill patient is 6 months.
· Client: Refers to terminally ill patients and their families or others responsible in making treatment and living decisions regarding end-of-life care.
Most people want to live. In that regard, we avoid death. We take precautions against it, and this may include everything from eating better to wearing restraints in our cars. We avoid death and in this regard, we are conditioned to fear it. Yet for those with a terminal illness as well as their surviving family, planning for death may be an opportunity to make the transition much more comfortable than for those who face sudden death. Hospice provides care to make this transition more bearable, yet many people avoid this planning until it is too late to effectively serve its purpose.
“‘There is an inaccurate perception among the American public that hospice means you’ve given up,’ said J. Donald Schumacher, NHPCO [National Hospice and Palliative Care Organization] President and CEO,” said the Center for Hospice and Palliative Care in 2007. According to a study conducted by Joan Teno, MD, MS, et. al. and published in the Journal of Pain and Symptom Management, 11.4% of surviving family members of terminally ill patients reported being referred to hospice by doctors and other hospital staff too late while only 1.4 percent reported being referred too early (2007, p. 3). Yet those who receive palliative care tend to live longer. “Those of us who have worked in the field have seen firsthand how hospice can improve the quality of and indeed prolong the lives of people receiving care” (2007, Center for Hospice and Palliative Care). According to a study cited in the same article, sponsored by the National Hospice and Palliative Care Organization and conducted NHPCO researchers surveying 4,493 terminally ill patients from 1998-2002:
Longer lengths of survival were found in four of the six disease categories
studied. The largest difference in survival between the hospice and nonhospice
cohorts was observed in CHF [congestive heart failure] patients where the mean
survival period jumped from 321 days to 402 days. The mean survival period also
was significantly longer for the hospice patients with lung cancer (39 days) and
pancreatic cancer (21 days), while marginally significant for colon cancer (33
Given the relatively short life expectancies of patients receiving such care, these number of days are significant not for the prolonging of life, but for the comfort and end-of-life planning for both the patients and their families. Perhaps more interesting for our purposes regarding [Green Valley Hospice] and [Green] County demographics is the finding that “no statistically significant differences in perception of appropriate vs. late referrals [were found] when patients were grouped by age at time of death, sex, primary illness leading to hospice admission, education, race, or ethnicity (2007, Teno et al, p. 3).
If, according to the aforementioned study, no statistically significant differences exist in perceptions of referral to hospice by ethnic or other demographic factors, then why conduct a study with these factors in mind? Keep in mind, the Teno study cited earlier surveyed the families of those who ultimately received hospice care—not of those who were referred but chose not to receive such care. We already know a large discrepancy exists locally in care provided to local Latino population as compared to the population at large—that is, 28.4% of [Green Valley Hospice] patients are Latino compared to 64.8% of the total population. Furthermore, [Green Valley Hospice] reports that of 32 hospital referrals in August of 2009, “27 converted into an admission” (2009, Smith). The hospice wishes to reach a broader public including potential patients who live at home and may not be subject to hospital referral. Lastly, a mass of studies across the nation suggest that ethnicity (or some underlying correlation to ethnicity) plays a critical role in the decision process regarding end-of-life care.
Numerous studies of Latino and white, non-Latino, terminally ill patients and their families “suggest that Latino ethnicity is predictive of end-of-life preferences in favor of life-prolongation” (2008, Volendes et. al., 700). In fact, according to the National Hospice and Palliative Care Organization, while Latinos comprised nearly 13% of the total U.S. population, “they represent only about 4% of Hospice patients” (2009, Allan). Numbers supplied by [Green Valley Hospice] mirror this trend within [Green] County. Before the hospice can campaign to change these perceptions, their origins must first be understood.
A study conducted by the Latin American Cancer Research Coalition (LACRC) of family caregivers contacted by hospice found marked differences in perceptions of hospice between Latinos and non-Latinos. The findings, reported by Kreling et, al., found Latinos 1) more likely to believe they could not afford hospice care, 2) less inclined to openly discuss death even with their own family, 3) often concluded that hospice provided inferior medical care than a hospital 4) were less likely to believe that their family member was dying (2007, Kreling et. al., pp. 6-7) Though the study was limited in scope (15 Latino and 15 non-Latino caregivers took part), the data-mining was intensive and included both in-depth interviews and focus groups under the funding of the National Cancer Institute of Washington, D.C. (2007, ibid, pp. 3-4). Furthermore, the study raises key points of contention for Latino caregivers: “There were several themes in Latino interviews that were either not present in Non-Latinos or different than Non-Latinos. These were themes of: denial; preference for information; truth telling/secrecy; and family control versus patient autonomy” (2007, ibid, pg 8). Some of these themes require brief explanation. For instance, the “preference for information” among Latinos refers to a tendency to avoid discussion of symptoms related to oncoming death while “truth telling/secrecy” refers to an unwillingness to discuss death itself (2007, ibid, pp 6-7). As one Latino family caregiver stated: “The worst thing about using Hospice care? The way they talk to you about death!” (2007, ibid, pg 9).
Why would such ethnic or cultural discrepancies exist? Levels of education and religious values may play separate or intertwining roles. For instance, individuals with less medical understanding of their dying family member’s illness may cling solely to the religious implications of death and thus turn a deaf ear to all other concerns. In either event, religious values do seem to play a role here. In studying the relative lack of hospice use among blacks and Latinos, Dr. Allen Greiner, a professor of family medicine at the University of Kansas Medical Center found that “the overarching theme for both groups in accessing end-of-life health care… was interest in incorporating spirituality into treatment of grave illness” (2004, Keller). Greiner goes on to state: “People’s religions, and more so their spiritual beliefs, are what they described as most important to them in describing dealing with serious health issues….And end-of-life stuff is pretty serious” (2004, Keller).
Marketing efforts aside, one might be tempted to simply respect this aspect of Latino culture and not attempt to push a service on them that they, by and large, do not want. Yet the LACRC study actually showed higher satisfaction among Latino caregivers who used hospice care services for a family member as compared to their non-Latino counterparts (2007, Kreling, pg 7). Furthermore, the Hispanic-American community is not monolithic in its cultural or religious heritage. Extensive research and analysis by Iraida V. Carrión at the University of South Florida also suggests an Hispanic population in a state of transition as it integrates more deeply into mainstream, secularized American culture.
The shift among Hispanics/Latinos from Catholicism to Protestantism may cause
them to be less dependent on traditional beliefs such as religious symbols, rites and
sacraments for hope and healing when coping with end of life issues
(2007, Carrión, pg. 24).
Even if the cultural and religious shift so well documented by Carrión is taking place among Hispanic-Americans, [Green Valley Hospice] cannot sit idly by and wait. Nor can it likely succeed in altering religious or cultural beliefs no matter how aggressive of a public relations campaign it wages. It can, however, attempt to assuage fears in some circumstances while avoiding the playing into those fears in others. In some instances, much more superficial pitfalls can be discovered and confronted. For instance, according to Barbara L. Allan of the SRA research group, the word “hospice” itself presents a basic problem when marketing to Hispanics, particularly those whose first language is Spanish. “[T]he word Hospice, frequently translated into Hospicio, conjures up thoughts related to poverty, asylum, and abandonment. Thus, the word alone sends strong negative signals that can make Hispanics reject the concept before they have invested any time to learn about it (2009). The National Hospice and Palliative Care Organization (NHPCO) echoes this concern. According to their 2006 Latino Outreach Guide:
It is important to emphasize to Latinos the importance of family in hospice care. Some Latinos have not heard of hospice, and many who have do not know much about it. Some equate hospice with nursing homes. Nursing homes have negative connotations in Latino families because they go against the cultural tradition of the family providing care for the sick and elderly. It was with this focus group that the term “compassionate care” was found to be more effective than “hospice” (2006, NHPCO, pg. 3).
Yet one can’t help but wonder if undue emphasis may be placed on ethnicity or even language barriers. For instance, do non-Latino whites have a much more favorable or “educated” understanding of the word “hospice” than do their Latin-American counterparts? For instance, in preparing cross-ethnic, nationwide data prior to a three year “Public Engagement Campaign” conducted by the National Hospice Foundation, results showed that “[a]pproximately 75% do not know that hospice care can be provided at home” (2001, Sullivan & Chandra, pg. 4). Other data offered by the National Hospice Foundation included the following:
· Nearly 80% of Americans do not think of hospices as a choice for end-of life care.
· Fewer than 10% know that hospice provides pain relief for the terminally ill.
· 90% do not know that Medicare pays for hospice.
· 25% of Americans say they are not likely to talk about impending death with terminally ill patients.
· Fewer than 25% have put in writing how they want to be cared for at the end of life
(2001, Sullivan & Chandra, pg. 4).
Given these statistics, it appears that misunderstanding about hospice care reaches into nearly every corner of the population. Furthermore, these statistics supplied by the National Hospice Foundation may be critical for [Green Valley Hospice] given that 114 of their 137 patients in August, 2009 in fact received home care, or that over 92% were subsidized by Medicare (2009, [Smith]). Lack of information is both widespread and critical.
Yet studies also show that hospices have a great deal to work with insofar as public attitudes and perceptions. A 2003 study conducted by AARP (formerly the American Association of Retired People) of its North Carolina patrons reminds us of some of the key reasons people do seek hospice services. Many of these are emotional and deeply personal concerns which should not be neglected in public outreach campaigns. For instance:
· 83 percent say it is very important to be at peace spiritually; sixty-two percent say it is very important to have comfort from spiritual or religious persons.
· Almost 90 percent say that total physical dependency would be worse than death.
· Seventy-one percent are concerned that they will be a burden to family and friends.
· At least eight in ten AARP members in North Carolina rate the following as very important when dealing with their own dying or thinking about dying:
o Honest answers from doctors (91%)
o Understanding treatment options (88%)
o Not being a burden to your loved ones (88%)
o Knowing what medicines are available (85%)
o Having things settled with your family (85%)
o Being at peace spiritually (83%)
o Getting your finances in order (80%)
(2003, Straw & Cummins, pp. 5-7).
In fact, the concerns found among AARP members are like a virtual menu of the concerns addressed by services provided by [Green Valley Hospice] and, in fact, most hospices. Besides providing a service to our client, I feel that this proposed research project is invaluable for several reasons. First, though extensive volumes of research exist regarding perceptions of palliative care, [Green] County encompasses a unique demographic. That is, the majority of residents are not only of Hispanic/Latino origin, but they in fact speak English most often as a second language, if they speak it all. Rather than of Cuban, Puerto Rican, or other heritage as found in most parts of the United States, the local population is of largely Mexican descent, whether indigenous or migrant. Second, and related to the first, this is the fastest growing ethnic population demographic in the United States. As the first “minority as a majority” state, New Mexico has an opportunity—and perhaps an obligation—to serve as a real-world laboratory for measuring population characteristics that increasingly reflect the United States as a whole, a call heeded by researchers the fields of anthropology, education, criminal justice, and other disciplines. Finally, I feel there is a moral obligation to conduct this research. End-of-life care provides for the terminally ill and their families by means already described. Hospice is, by and large, taxpayer funded. Yet certain segments of our community are clearly underrepresented as the recipients of that care. In the name of alleviating suffering across all portions of our population, it makes ethical sense to make some attempt to alleviate this discrepancy.
The research design will consist of an empirical data-gathering in a mixed methods approach. That is, quantitative measurements will be used primarily to gather demographic data of our research participants, while qualitative methods will be employed to gather information regarding their perceptions of hospice. The worldview of this research is pragmatic. As researchers, we do not anticipate conducting this research to affect change among respondents, though our client will ultimately use this information to address changes in their own public outreach and, potentially, within the attitudes of their own potential clients. The research will unfold in three stages detailed below. These stages are consecutive, though there may be room for some chronological overlap for the sake of expedience. Before going into detail of the research itself, it is worth noting that the research is already grant-funded. Though resources are not limitless, the [Green Valley] Economic Development Center has the resources to prepare research materials as proposed free of charge to [Green Valley Hospice], a nonprofit, 501(c) organization. Much of the research itself (surveys and focus groups) will be performed by [Green Valley Hospice] by its own marketing staff for various reasons including but not limited to time constraints, greater staff resources, and expertise and experience. The [Green Valley] Entrepreneurship Institute will prepare the aforementioned surveys, make suggestions for discussion in the focus groups, and provide textual analysis of current [Green Valley Hospice] marketing materials.
Stage 1: Survey
A survey will be designed and administered to volunteer respondents throughout [Green]County. The single-page survey will consist of two distinct sections. The first section will include purely quantitative questions relevant to our purposes including age, gender, income level, education level, preferred language spoken at home, and religious and ethnic affiliation from multiple choice selections. The purpose of this portion of the survey is two-fold. First, it will allow us to determine whether our sample of respondents represents current [Green] County demographics and, if not, allow us to mathematically weight replies from underrepresented segments of the population. Second, it will provide insight into correlations between this data and concerns revealed in the second, qualitative portion of the survey.
A final question on the first portion of this survey will simply ask, “Are you familiar [Green Valley Hospice], or do you have any knowledge what services hospice provides?” Those who answer in the negative will be tallied. Those who answer in the affirmative will be asked move onto the qualitative portion of the survey. Answers such as “somewhat,” “a little bit,” “I’m not sure,” and so one will be considered “affirmative” at the discretion of the survey taker.
For purposes of convenience to the respondents, including time constraints, the [Green Valley] Research Team and [Green Valley Hospice] have agreed to limit the qualitative portion of the survey to two, open-ended questions. Also, limiting the number of questions will help keep us from leading respondents to answer in ways we anticipate. The agreed upon questions have been narrowed to:
A preliminary “test run” among 18 respondents has found these questions the most conducive to meaningful and diverse responses. Each question yielded between from 1 to 3 meaningful replies, in either sentence or fragment form.
The survey itself will be conducted by [Green Valley Hospice] staff and/or temporary hires, such as graduate students. These researchers will conduct the interview “live”—that is, they will survey participants in face-to-face settings and write the answers down themselves in order to avoid confusion due to issues such penmanship. Spanish-language surveys will be issued, and surveyors will be bilingual in English and Spanish. Training will be brief, and we have suggested to [Green Valley Hospice] not to have their researchers aggressively prompt (verbally or through body language) their respondents too aggressively when answers do not seem satisfactory, believing that the first response is likely the most candid. Where respondents cannot provide any sort of meaningful reply to either of the two questions, the survey will likely be recast as “negative” – that is, the participant is not familiar in any way with hospice care.
We have recommended to [Green Valley Hospice] to conduct the survey in settings such as outside of grocery stores, malls, churches, farmers markets and other public venues. We have strongly suggested that they keep local population demographics in mind in choosing where to conduct their surveys. That is, choosing locations in various areas of the city as well as outside the city, choosing churches and other locations that reflect a diversity of age, income, and ethnic groups, etc. For instance, surveys may take place at both Catholic and Protestant churches, or outside of upscale shopping centers as well as discount or bulk centers. While we cannot claim that this approach will yield a truly scientific, random sampling, we believe it will bring us close enough that we can weight the responses by using the quantitative information provided in the first portion of the survey with relatively little adjustment. An ongoing tally of the surveys over the weeks that it takes place will also allow surveyors to adjust their survey locations and who they approach as time goes on.
Finally, we have decided to limit respondents to ages 25 and above. End-of-life care planning generally involves the entire family, and anyone may at some time find him or herself faced with such a decision. Yet the decision is typically made by adult family members, and [Green Valley Hospice] agrees that this is a good cut off age based on the clients they have dealt with. Given that the number of adults over 25 in [Green] County is approximately 117,000 (2008, U.S. Census Bureau estimate) we have suggested that 383 respondents be interviewed. This will achieve a confidence level 95% and a confidence interval of +/-5% (2009, Creative Research Systems). That is, “the 95% confidence level means you can be 95% certain” that the sample reflects the overall population within a plus or minus 5% margin for error (2009, ibid).
Upon receiving the completed surveys, researchers at the [Green Valley] Center will code the qualitative data for themes regarding aversion to hospice, weight any underrepresented demographic groups, and cross-correlate apparent themes with the various demographic data provided. In this way, we can uncover not only what the major concerns are regarding hospice care, but which of those concerns are more dominant among certain age or religious groups, ethnicities, and income or educational levels achieved. [Green Valley Hospice] here may discover its first step toward altering its message depending on venue and audience. For instance, they may find that the language or message they use in a Spanish-language magazine geared toward young, Latino males may be different than one geared toward English-speaking, predominantly white, retirees.
Stage 2: Textual Analysis of Current Marketing Materials
[Green Valley Hospice] currently has a wide menu of marketing media. These include pamphlets, brochures, a website, and public events where their message is expressed verbally in a public-speaking forum as well as face-to-face. Textual analyses of all these media will be conducted by [Green Valley] researchers. Both positive phrasing such as “comfort and care” as well as negative phrasing such as “end-of-life” or “terminal” or “advanced illness” will be coded and thematically categorized. This is not to imply that no “negative” phrasing should exist. Rather, we want to look at past research as well as survey responses to see where certain wording or phrasing may play into negative perceptions. For instance, we already know that the word “hospice” itself carries negative baggage, particularly among Spanish-language speakers. Another possible example from a current [Green Valley Hospice] brochure is the predominant promise of “Medications, equipment, and supplies to help the patient be as pain free and comfortable as possible.” Yet the AARP survey cited earlier suggests that a vast majority of seniors have concerns about taking too much pain medication, while a third fear becoming addicted (2003, Straw & Cummins, pg. 1). Additionally, given research clearly showing that most people do not know that hospice provides at-home care, do current [Green Valley Hospice] media make clear at a glance that they do provide such care—in fact, to a majority of their patients? It is with this analytic view that we will analyze current media, and compare it to positive trends and marketing strategies compiled by various articles and market research groups.
Stage 3: Focus Group Discussion
Surveyors in Stage 1 will end their interviews by asking if the participant will consider taking part in focus group discussion. Respondents who answer in the affirmative will detail their preferred contact options, whether by telephone, email, or other. [Green Valley Hospice] has a several potential rooms in which to hold focus group discussions, including both a banquet room and several, more comfortable meeting rooms. [Green Valley Hospice] is also prepared to offer cash rewards or a variety of gift certificates each valued at $25 to entice potential participants.
Participants will be chosen by several criteria based upon their replies to the survey. These will include both their demographic data and their replies to the open-ended questions. How we will compose these groups will depend largely on the responses we receive, that is the themes and corresponding demographic cross-sections we find. A preliminary guess based on the literature is that we will compose four groups broken down in the following manner:
Positive Impressions of Hospice
Negative Impressions of Hospice
“Negative” or “Positive Impressions of Hospice” will be determined by responses to the first open-ended question in the survey, “What thoughts or feelings come to mind when you think of hospice care?” We have chosen to segregate the groups in this manner for several reasons. First, segregation by ethnicity is intended to help limit language, cultural, and other barriers. Catholic Latinos, for instance, may feel uncomfortable discussing religious aspects of hospice with white counterparts whom they may presume do not share or are not receptive to those views. Similarly, respondents with very positive views toward hospice may feel inhibited by those with negative views of hospice and who portray very deep, familial or religious values. We want each group as open as comfortable with each other as possible and based on the largest trends we find. For instance, if we find a large percentage of Latinos are Catholic, and that a large percentage of Catholic Latinos hold negative views of hospice and for similar reasons, this would make an ideal Group 3 as per the table. This potential arrangement is just one example; we do not hold foregone conclusions, but we do want to find as broad and common of demographic swaths as possible for purposes of marketing in media (such as public service announcements, websites, or local magazines) which reach relatively large audiences.
We have proposed that focus discussions remain intimate, with no more than six carefully chosen participants per session. Sessions may last 2-3 hours and open discussion with limited prompts from the group leader are encouraged. Some prompts, of course will be required. The first portion of discussion will focus on the surveys themselves, while the second portion following a break will center on reactions to current and potential marketing media as presented by the group leader. Preliminary data presented by [Jane Smith] of [Green Valley Hospice] suggests that local whites and/or those with higher levels of education tend to be concerned about issues of qualification of staff, such as whether the nurses are licensed RNs (2009). Catholics and/or Hispanics tend to be concerned with issues of prolonging life, such as feeding tubes (2009, [Smith]). These issues will certainly be introduced as topics for discussion. Other prompts for the first portion may include discussion drawn from themes we have uncovered and directly from the survey responses themselves—ideally from responses of those not present in the discussion and both similar and contrary to the general opinions of the group. The second portion of the discussion, focusing on marketing materials both current and suggested, will attempt to gauge reaction to multimedia materials, including but not limited to brochures, websites, and video public service announcements. Open discussion will consist of reactions to logos, slogan, and message. Preliminary discussions with the marketing staff of [Green Valley Hospice] suggests that the current slogan that appears on brochures, “Your Wishes…Our Job” has had some negative reaction from audiences and that the use of the word “Job” may play into feelings of family guilt. These are the kinds of issues we mean to discuss.
Finally, [Jane Smith] ([Green Valley Hospice]’s marketing director) will likely lead the discussions due to her familiarity with the hospice, its patients, patient families, and current marketing directives. We have, however, recommended that two, independent secretary/coders perform the note-taking since it is the hospice’s desire not to include video or other recording equipment during the session. We have suggested hiring experienced graduate students to perform these roles, preferably from separate departments of campus. They will present their notes and coded to the [Green Valley] Center within a two weeks following the final session where we will examine them and present our findings and recommendations to [Green Valley Hospice] within six weeks. Start to finish, the entire project (starting with the surveys) is anticipated to take approximately four months and last approximately one semester (spring) with time set aside for [Green Valley] interns during summer I in case the project takes longer than anticipated.
Significance and Further Research
For [Green Valley Hospice], this study will provide data to help their marketing staff better understand the perceptions, both negative and positive, toward hospice in general as well as to their current marketing materials. Furthermore, it will give them some insight to the broader themes of these perceptions as they correlate to broad demographic groups within [Green] County and provide a first step toward better public outreach and education.
Perhaps more substantially and for broader purposes, the study will augment current scholarship regarding perceptions of hospice care. Large groups of our population could benefit greatly from these comfort and planning services, yet research has shown that misperceptions drive away the families who could benefit most from these programs which are largely volunteer and tax-payer funded. America’s demographics are changing, and as the first Latino-majority state, understanding better ways to communicate these services may be one step in providing comfort, reducing stress, and alleviating pain for the millions who need it most.
Allan, Barbara L. (2009) “Why Hispanics may be more uncomfortable with hospice.” HispanicMPR.com. Retrieved from http://www.hispanicmpr.com/resources/articles/why-hispanics-may-be-less-comfortable-with-hospice/
[Smith], [Jane]. (2009). [Green Valley Hospice]/[Green Valley] Economic Development Center (Internal Questionnaire.)
Carrión, Iraida V. (2007). End of Life Issues Among Hispanics/Latinos: Studying the Utilization of Hospice Services by the Hispanic/Latino Community. Dissertation retrieved from University of South Florida, Anthropology, Theses and Dissertations. http://anthropology.usf.edu/graduate/thesis.aspx
Center for Hospice and Palliative Care (2007). Hospice and Team Physician Newsletter, Spring 2007. Retrieved from http://www.centerforhospice.org/pdf/HPSpring_07.pdf
Creative Research Systems (2009). “Sample Size Calculator.” Retrieved from http://www.surveysystem.com/sscalc.htm#one
Keller, Julia (2004). “End of Life Care Lags For Blacks, Latinos.” Science and Theology News. Retrieved from http://www.stnews.org/news_end_0904.html
Kreling, Barbara, Ph.D., MPH; Perrt-Gentil, MD, MPH; Selsky, Claire, MA; Huerta, Elmer A., MD, MPH; Mandelblatt, Jeanne S., MD, MPH. (2007). “‘The Worst Thing About Hospice Is That They Talk About Death’: Hospice Decisions And Experience Among Latino And Non-Latino Cancer Caregivers.” Retrieved from http://www.gwpartnership.org/files/LACRC_Hospice_Use_in_Latinos.doc
National Hospice and Palliative Care Organization. (2006). “Latino Outreach Guide.” Retrieved from http://www.nhpco.org > Communications
Straw, Gretchen, PhD & Cummins, Rachelle, MA. (2003). “North Carolina AARP End of Life Survey.” Retrieved from http://research.aarp.org / 2003AARPSurveyResults.pdf
Sullivan, Willard A. III & Chandra, Ashish. (2001). Marketing Hospice More Effectively: Grand Strategy Versus Trivial Tactics. Proposal retrieved from http://sbaer.uca.edu/research/acme/2001/36.pdf
Teno, Joan M., MD, MS; Shu, Janet E., BS; Casarett, David, MD; Spence, Carol, RN, MSN; Rhodes, Ramona, MD, MPH; and Connor, Stephen, PhD. (2007). “Timing of Referral to Hospice and Quality of Care: Length of Stay and Bereaved Family Members’ Perceptions of the Timing of Hospice Referral.” Journal of Pain and Symptom Management. Retrieved from http://www.xlhospice.com/timing_of_hospice_referral.pdf
U.S. Census Bureau (2006-2008). (Doña Ana County). Retrieved from Link
Volandes, Angelo E., MD et al. (2008). “Overcoming Educational Barriers for Advance Care Planning in Latinos with Video Images.” Journal of Palliative Medicine, 11.5, 700-706.