Haynes-Lewis: Historical Background

Hilda Haynes-Lewis,  NURS7455

Introduction

The needs of older African Americans with advanced cancer are not understood. I became interested in this population after first thinking of this group as survivors and looking into the survivorship programs that are offered to people living with advanced cancer. So my first review of the literature focused on people with advanced cancer as survivors and I read the article by Haylock that discussed people with advanced cancer as the new survivors(Haylock, 2010).  I was aware of the  disparities in cancer treatment , poor survival outcomes for underserved populations and vulnerable populations but further investigation of the literature revealed how living with advanced cancer was a multifaceted problem for people in urban centers related to socioeconomic and the personal struggles to survive not only cancer but economic distress(Barton-Burke, Smith, Frain, & Loggins, 2010; Hughes, Gudmundsdottir, & Davies, 2007). As I continued to explore the literature, my population of interest grew to include those living in an urban area and receiving treatment.

I reviewed the body of literature regarding supportive care needs and found a theoretical framework that can be applied to patients with advanced cancer specifically looking at their needs in several domains(Fitch, 2008). Lastly, I included a sample from the book edited by Reverby on the impact of the Tuskegee Syphilis Study to provide a cultural reference (Gamble, V.N., 2000)  for why many older African American may  distrust the medical system and perceive their supportive care needs will not be met by the medical profession.

Summary of Sources

  1. Haylock, P. J. (2010). Advanced cancer: emergence of a new survivor population.Semin Oncol Nurs, 26(3), 144-150. doi: 10.1016/j.soncn.2010.05.008.

Haylock’s article in 2010 was a review of the literature of the latest advances in technology that has made it possible for more people to live longer with advanced cancer. Dr. Haylock advanced the idea of focusing on the psychological physical, spiritual and emotional needs or burdens of this the growing number of people which she defines as a population. She discusses the impact of this population on the countries financial resources and the need to affect public policy in relation to insurance coverage and allocation of resources. In addition, she discussed  the toll  advanced cancer has  on the patient  and family ,most notably the undue stress of living with an uncertain future and the  probability of severe , distressing physical and psychological symptoms as the cancer continues to progress (Haylock, 2010). This article presented a comprehensive picture of the costs attributed to advanced cancer on the individual and on society.

  1. Barton-Burke, M., Smith, E., Frain, J., & Loggins, C. (2010). Advanced cancer in underserved populations. Semin Oncol Nurs, 26(3), 157-167. doi: 10.1016/j.soncn.2010.05.003.

Barton-Burke, Smith, Frain, & Loggins (2010) also wrote a review article about underserved populations and advanced cancer. The background discusses the impact of advanced cancer on marginalized individuals. The authors include older adults as a marginalized group and provide exemplars of the impact of advanced cancer on this group. For me, this article discussed the relationships between healthcare, socioeconomic status, race, age  and poor community resources and unfavorable outcomes for patients and the public(Barton-Burke et al., 2010). Lastly, they provide samples of successful evidence- based interventions and programs. The information provided is useful in conducting research regarding the needs of marginalized groups as well as the development of targeted programs.

  1. Hughes, A., Gudmundsdottir, M., & Davies, B. (2007). Everyday struggling to survive: experience of the urban poor living with advanced cancer. Oncol Nurs Forum, 34(6), 1113-1118. doi: 10.1188/07.ONF.1113-1118.

The  article written by Hughes, Gudmundsdottir, & Davies (2007) focused on the struggles of underserved populations was. The authors used the method of interpretive phenomenology to understand the meaning of dignity for 14 patients with advanced cancer who were the urban poor. They concluded that the urban poor with advanced cancer faced daily hardships related to obtaining basic necessities and expressed the desire to maintain their dignity and to have others respect their humanity. They also noted that for these individuals, cancer was more of a chronic disease and they felt they were living with cancer versus dying from cancer(Hughes et al., 2007). The article was a change from the others because it was based on the moving and tragic personal stories of the participants. It helped me to remember that my population of interest is made up of individual human beings each with a unique story.

  1. Fitch, M. I. (2008). Supportive care framework. Can Oncol Nurs J, 18(1), 6-24.

My research is based on the Supportive Care Framework (SCF). The SCF was originally used by administrators and providers as a framework to develop programs targeted to a specific group based on their expressed needs.   Fitch (2008) discussed the inception of the SCF and described the six domains of needs for cancer patients. This framework had been tested and is congruent with the constructs of my research that I want to test.

  1. Gamble, V.N. (2000). Under the Shadow of Tuskegee.  In Tuskegee’s Truth: Rethinking the Tuskegee Syphilis Study, S.M. Reverby (Ed.), pp. 431-442. Chapel Hill: University of North Carolina Press.

The last article was one you provided, Gamble (2000). It discusses the impact of medical abuse on the African American community beginning during slavery culminating in the Tuskegee Syphilis Study. I had heard of this study and seen the impact that is still alive today especially with older African Americans. Many of my patients in their late 70’s and early eighties talk about the experiment and it continues to affect their decisions regarding clinical trials. The reading gave a historical perspective that I was not aware of including the gynecological experimentation on slaves.  It goes on to show how the studies have adversely affected African Americans since we do not participate in clinical drug trails in large numbers. Therefore clinical information on the effects of these medications on African Americans is lacking.

Conclusion

Each source addressed a different aspect of my research question but taken as a whole they show my thought process on how to address and conduct research to assess the perceived unmet needs of older African Americans with advanced cancer.

Based on my review of the literature my research question is; what are the perceived supportive care needs of older African Americans with advanced cancer who live in an urban area and are currently receiving treatment?