We are delighted to announce the first featured article for the new issue of ANS – Volume 40 Issue 1 – officially published today on the ANS website! The article is timely given the current affairs worldwide placing many people at risk based on their Muslim religion. The article is titled “A Bicultural Researcher’s Reflections on Ethical Research Practices With Muslim Immigrant Women Merging Boundaries and Challenging Binaries,” authored by Jordana Salma, MN; Linda Ogilvie, PhD; Norah Keating, PhD and Kathleen F. Hunter, PhD. The lead author, Jordana Salma, provided this message about this work:
Jordana Salma
There are manuscripts that I have written because I have to. This manuscript I wrote because I needed to. I am, to put it in the simplest terms possible, a bilingual bicultural Muslim Lebanese Canadian woman. The convoluted nature of trying to capture in writing this aspect of my identity was amplified ten-fold in living this identity while doing research. It took me a year of writing and re-writing, with the support and input of my co-authors, to complete the finished version you see in ANS. I began writing to make sense of my experiences of completing a dissertation research project. My co-authors frequently reminded me to move beyond personal reflection towards thinking about the implications of my experiences for the broader community of researchers engaged in research activities with Arab and Muslim women. I could not have completed the final version without their mentorship and perspectives. I see this article as highlighting three points:
Bicultural researchers can uncover ethical tensions because they live between worlds and, subsequently, are witness to different world views, normative practices, and ethical systems.
Muslim women, both as researchers and as research participants, can and should be actively engaged in shaping ethical research practices.
Feminist and Islamic perspectives can be utilized together to reconcile perceived ethical tensions when doing research.
Readers will interpret and draw on different aspects of this article based on their personal needs and insights. I do hope that the article supports in some small way the ongoing discussions around inclusion, equity, and diversity in our research spaces. I am excited to continue this conversation with communities of researchers actively working to promote and advocate for ethical research practices.
We are currently featuring the article titled “Advancing Nursing Research in the Visual Era: Reenvisioning the Photovoice Process Across Phenomenological, Grounded Theory, and Critical Theory Methodologies” by Robin A. Evans-Agnew, PhD, RN; Doris M. Boutain, PhD, RN and Marie-Anne S. Rosemberg, PhD, RN. This article has important insights not only for the use of photovoice as a method, but also insights for the universal challenge of congruence of method and methodology. The article is available for no-cost download at the ANS site while it is featured! They have prepared a short video about their work, followed by Dr. Evans-Agnew’s message for ANS blog readers giving interesting background on their work:
Photovoice methods are powerful, low-cost, and versatile. The cornerstone activities within these methods are participant-driven photography and elicitaion. Photovoice researchers employ photovoice methods for engaging participants in exploration of public health issues. For example action research designs of photovoice often employ a critical theoretical orientation with emancipatory goals of community assessment, empowerment, and policy change. This manuscript has come about as a culmination of our work as nursing scholars interested in social justice, method-methodology fit, and visual methods.
With the advent of digital cameras, photovoice has grown considerably in popularity in health science research. Caroline Wang, Mary Ann Burris, originally coined the term in the 1990’s after experiences working with rural Chinese women in Yunnan Province, China. We point out in this retrospective article that two nurse researchers writing for this journal also were pioneering techniques in the 1990’s in participant photography: Jennine Nelson with patients recovering from cancer and Mary Hagedorn with parents of children with disabilities. ANS would not publish another study using photovoice until 2008 with Jan Sitvast and colleagues, who reported on almost a decade of participant photography with mental health patients. What these researchers shared in common with Wang was their focus on grounding their work inside a theoretical framework.
In this retrospective article we update the photovoice process by proposing three specific questioning strategies for phenomenology, grounded theory, and critical theory. Our own research is grounded in critical theory: Dr. Rosemburg (Sanon) explores the perspectives of Haitian hotel workers using the theoretical frameworks of transnationalism and critical ethnography, Dr. Evans-Agnew explores the discourses of asthma management disparities in African American youth and Latinx mothers of children with asthma.
In the process of conducting our research we became aware that the literature critiquing participatory visual methods in nursing and health research was under-developed in terms of design, social justice outcomes, and emancipatory intent. We observed that participants in photovoice studies were inconsistently involved in the selection or display of photos or titles or texts in the research manuscript. In some cases the ways researchers publish participant photographs and texts appeared to increase their vulnerability. For example in one published article we noticed that the participant’s caption, “that vacant business property with bullet holes…” under a photo they had taken of the building was subtlety altered by the authors to, “bullet holes that riddle a local building.” We concluded that photovoice designs, unless carefully guided, might continue to gaze more closely at the disadvantaged than the advantaged.
What we have argued for in this manuscript is for researchers to make careful decisions on how photovoice process might differ between methodologies. These decisions include those made pertaining to research objective, participant selection, participant elicitation, analysis and dissemination of photos and phototexts. We approached this problem by reviewing the state of the science of photovoice methodologies in phenomenological, grounded theory, and critical theoretical designs. We found that more researchers had considered how to apply photovoice in phenomenological designs (including Nelson and Hagedorn the nurse researchers who published in ANS in the 1990’s) than grounded theory; and that aside from our own work in critical theoretical approaches for Photovoice, few ostensibly critical participatory photovoice studies were grounded in theory.
This manuscript provides a roadmap for helping researchers navigate different designs throughout the various stages of the photovoice process. We offer questioning prompts that specifically fit data collection to the methodology for three key moments in the photovoice process: stimulating the collection of photos, discussing/participatory analysis of the photos, and evaluating audience response at photovoice gallery events. We consider this latter set of questions to re-invigorate the original transformational intent of advancing participant voice in photovoice (Figure 1). By better understanding how audiences react to the presentation of photos and photo-texts, research teams (including participant researchers) can develop a deeper understanding of the persuasive power or relevance of some photographs over others, thereby advancing rigor.
In writing this Blog, I had a chance to connect with two of the the three researchers who have published photovoice work in this journal: Jeanine Nelson and Jan Sitvast. Both researchers book-end almost a quarter of a century of nurse-researcher involvement with participant photography, from Jeanine’s work in Colorado in the 1990’s with Photographic hermeneutics to Jan’s work on photo-stories with psychiatric ward patients in 2008-2016. Dr. Jeanine Nelson recalled a confluence of experiences that motivated her to hand cameras to her participants in order to “see as best you can the view from those who have the experience.” She worked as a research assistant with Joan Magilvy using researcher-driven photography to elicit “emic experience and dialogue” on homecare and aging in rural Colorado (Magilvy, Congdon, Nelson, & Craig, 1992). She also credits Marilyn Ray (also published extensively in ANS) with suggesting that she ask the participants to take their own photographs. Her research occurred before disposable cameras and she recalled the technical difficulties she had in developing slide film and using a slide viewer for each of her participant interviews. Jeanine suggested trimming questions from our suggested questioning strategy for phenomenological designs, eliminating the question, ”What is really happening” in order to more sufficiently bracket the researcher and instead probe with short questions such as “tell me a little more.” Dr. Jan Sitvast is continuing his work with patients recovering from psychological events, he says, “Right now I am engaged in a study where we stimulate vitality in people who are otherwise too much thinking of their situation in negative catastrophic terms. The photo assignments make people aware of what is beautiful or fine.” Jan’s work provides new opportunities for using participant-photography as a therapeutic tool for nursing practice.
This retrospective article provides new groundwork for advancing participant photography in nursing research. We review the process, especially in the contexts of theory, and suggest new questioning strategies. Our hope is that nurse researchers continue to advance not only the methods of participant photography, but also deepen their scholarship in the theoretical grounding of these methods for advancing knowledge and discovery.
Robin Evans-Agnew
Magilvy, J. K., Congdon, J. G., Nelson, J. P., & Craig, C. (1992). Visions of rural aging: use of photographic method in gerontological research. Gerontologist, 32(2), 253-257.
We are delighted to announce the addition of a new issue topic for ANS Volume 41 Number 4! Manuscripts are due April 15, 2018, so there is ample time to wrap up your project and plan for this issue! Here are the details:
Emancipatory approaches to nursing research and practice have escalated in the context of major political and cultural upheavals worldwide. For this issue we seek scholarship that informs emancipatory nursing practice and research. We welcome research reports that use emancipatory methodologies, emancipatory philosophic analyses, critical and feminist critiques of existing discourses and practices, description of and evidence supporting emancipatory nursing practices. Date manuscripts are due: April 15, 2018.
One of the consistent features of ANS has been the publication of article focusing on the analysis and development of concepts. This is one of the fundamental processes required for sound scholarship, and nurses have used a wide range of approaches to do so. Over the years, these methods have grown increasingly sophisticated and productive, and the new sequence of articles in this collection demonstrate.
The ANS collections are being updated to extend through the year 2006. The collections are no all-inclusive of articles published in the journal; they are selected initially because of my editorial judgement of their lasting influence, and their importance as a foundation for contemporary nursing scholarship. I welcome your response to these collections as they are updated in the weeks ahead!
Dr. Wool began her doctoral studies in 2009 with a program of research in perinatal palliative care (PPC), an interdisciplinary approach to services for parents who opt to continue a pregnancy after learning of life-limiting fetal condition (LLFC). Her early work was a multiphase study to devise and test an instrument that filled a gap in understanding clinician attitudes and practice barriers to providing perinatal palliative care (PPC). The Perinatal Palliative Care Perception and Barriers Scale is a clinician-level instrument in use or in translation worldwide.
More recently, Dr. Wool developed a parent-level instrument in order to create the foundation for future work in quality metrics. The palliative care sector is dedicated to ensuring the highest quality of care is given to all dying patients. The aim of this quality initiative is to eventually enable benchmarking in the field. The development of the instrument Parental Satisfaction and Quality Indicators Scale included 405 participants. This instrument has generated a great deal of interest and is currently in translation in Chili, Japan, and Portugal and in use at Harvard Medical School.
ANS recently published the results from parents’ reports of care during their labor and birth experience, known as the intrapartum period. Parents who have their medical needs addressed have higher odds of being satisfied with their care. Psychosocially, parents also yearn for the health care providers to treat their baby with respect and dignity, in spite of their life-limiting condition. Families who experience such tragic loss need clinicians who come alongside them and help shoulder the burden and provide resources for healing.
Dissemination of Instruments
Purple stars: Perinatal Palliative Care Perception and Barriers Scale
Red stars: Parental Satisfaction and Quality Indicators Instrument
The latest ANS featured article from the current issue focused on Palliative Care is titled: “What End-of-Life Care Needs Now: An Emerging Praxis of the Sacred and Subtle” by William Rosa, MS, RN, LMT, AHN-BC, AGPCNP-BC, CCRN-CMC and Tarron Estes, BA. We invite you to download the article at no charge while it is featured, and return here to offer our responses for discussion. Here is a message from the author about the work behind the article:
William Rosa
As the tsunami of aging population grows, and medical technical care alone misses the heart of caring, so does the cry to “Occupy Death”, to create care and healing at end of life and “Restore Death to its Sacred Place in the Beauty, Mystery, and Celebration of Life”. It is no longer enough to expect death with dignity; we must strive toward evolving human-centered care. It is not sufficient to ‘do no harm’; we must deliberately create healing environments guided by the spiritual autonomy of the dying one.
Tarron Estes
The wonderful news is this: As this cry grows to restore sacred, comforting care to our loved ones during their final months, weeks, and days of life, there is an equivalent groundswell of desire to serve, and a growing numbers of end of life doulas rising to meet the needs of those nearing death. This is the premise and guiding force behind our work.
Our latest featured article is “Decision Making Among Older Adults at the End of Life: A Theoretical Perspective” by Rafael D. Romo, PhD, RN, PHN; Carol S. Dawson-Rose, PhD, RN, FAAN; Ann M. Mayo, DNSc, RN, FAAN; and Margaret I. Wallhagen, PhD, GNP-BC, FGSA, AGSF, FAAN. The article is available for no-cost download while it is featured, so I encourage you to visit the website, read the article, and return here to add your comments about this work! Dr. Romo shared this background information about his work for ANS readers:
We are honored to have our manuscript has been selected as an Editor’s Pick. This work has special meaning for me (the first author) as it is the culmination of a long journey, one that began with my mother’s death in 2000, led to my career as a nurse, and on to a PhD. Through her death (and my father’s death that occurred while I was working on my
Rafael Romo
dissertation), I saw first-hand how the process in which decisions are made is at least, if not more, important as the choices themselves. As clinicians, however, we often find ourselves perplexed by patients’ decision making.
Anticipating and predicting patient decision making would help clinicians who are responsible for supporting and guiding patients through the process, which at times may feel like gazing into a proverbial crystal ball. In my PhD program I began to look at different frameworks that exist to explain, if not predict, decision outcomes among older adults, particularly at the end of life. Prospect theory1 is one important theory that attempts to explain decision making, though in the area of economics. Not only is the original paper one of the most frequently cited papers ever published,2 but the theory has been rigorously tested through numerous studies in a wide variety of fields.
I became interested in prospect theory because it has emerged as a potential framework in healthcare decisions and shows great promise. However, I was struck by one aspect to the existing healthcare research: how the commodity is determined. This commodity is a continuum on which a choice can be measured as a gain or a loss. In economics, the commodity has generally been a purely monetary measure. This is easily measured and constructed as everyone has a sense of what $100 is, even if it is more or less important based on one’s financial situation. In healthcare, the commodity has been measured not so much from patients’ perspectives but from an objective clinical criterion of health. In this study we found that participants’ subjective perceptions of health were markedly different than those determine by traditional clinical measures. While clinicians may use disability or comorbidity as a commodity on which to value choices that is indeed objective, participants were determining their health differently. Not only that, they were trying to value choices on two competing criteria: their desire to live as long as possible and their hope to maintain a high quality of life.
By using prospect theory as an a priori framework in this analysis, we bring important innovations to our understanding of the theory as it is used in healthcare. First, we chose to look at commodities of health status and prognosis as the participants defined them. Thus, rather than using their clinical status and prognosis – which was poor for all the participants – we relied on their personal perceptions as this is the point of reference from which they make decisions. Second, we examined how these two commodities were being utilized together, as it became apparent our participants were valuing choices on both. Even those who felt they were in the best of health didn’t make choices solely on that criterion; rather, they still considered how long they felt they had to live. Likewise, those who felt they had a very short prognosis still “wanted a chance,” as one participant put it. What we discovered is that participants were trying to achieve a delicate balance between the two and that using multiple criteria appears to become more and more important as ones health declined. As they approach the end of life, they are not willing to sacrifice quality of life completely to live as long as possible. Instead, they want a happy medium. This desire to use two commodities seems unique to end-of-life decisions and was not fully addressed by prospect theory.
Is theory needed to understand decision making at this specific time of life? We argue yes. Theory is important both to clinical practice and research. Because clinicians are called upon to resolve the discordant views patients may have of both their health and prognosis, they greatly benefit from understanding this important balancing act. Clinics need to help patients navigate through the complex choices around end-of-life care. While “correcting” patients’ subjective self-assessments may seem like taking away hope, patients cannot make the value-based decisions they say are important without fully understanding the true nature of their situations. Our participants understood this and looked to providers to guide them – and in many cases, to simply make decisions for them.
Besides its value for clinicians and patients, theory plays an important role from the research perspective, as it helps us identify what needs to be studied, and by extension, what interventions may be helpful. Theory also helps us determine where interventions can be applied. Despite all the research that has been done in end-of-life decision making, older adults frequently continue to receive care that is \inconsistent with long-held views, so we continue to have a weak understanding of how older adults are making these choices. In this paper we propose an extended view of prospect theory that can be used to better frame decision making at this unique and challenging time of life. We do not propose this extension as the definitive statement on theory related to end-of-life decision making. We cannot yet offer ways to test and validate our perspective. Rather, we seek to start a dialog that will lead to new and innovative thinking in end-of-life decision making, particularly when the decisions transition from choices about what one would want in an abstract future to what one does want in a concrete reality of today. There are, and will be, detractors of our perspective of prospect theory. We welcome this and hope our manuscript initiates a long, vibrant conversation that will indeed push the envelope and prompt further research that enables us to ensure older adults at the end of life receive high-quality care that is consistent with their own values and goals at the end of life.
Kahneman D, Tversky A. Prospect theory: an analysis of decision under risk. 1979;47(2):263-292.
Wu G, Zhang J, Gonzalez R. Decision under risk. In: Koehler DJ, Harvey N, eds. Blackwell Handbook of Judgment and Decision Making. Malden, MA: Blackwell Publishing; 2004: 399-423.
Nurses are at the center in providing palliative care, and at the center of the larger enterprise of exploring and finding effective ways of responding to the physical, emotional and spiritual suffering of patients and their loved ones. The articles in this issue of ANS Make important contributions to the theoretical, philosophic and empirical approaches that inform practices that shape effective palliative care. Follow this blog for information as each article is featured, and take advantage of the opportunity to download the articles at no cost while they are featured!
The essential purposes of ANS are to advance the development of nursing knowledge and to promote the integration of nursing philosophies, theories and research with practice. We expect high scholarly merit and encourage innovative, cutting edge ideas that challenge prior assumptions and that present new, intellectually challenging perspectives. We seek works that speak to global sustainability and that take an intersectional approach, recognizing class, color, sexual and gender identity, and other dimensions of human experience related to health.
This journal is a member of, and subscribes to the principles of, the Committee on Publication Ethics (COPE) www.publicationethics.org
The ANS Blog provides a forum for discussion of issues raised in the articles published in Advances in Nursing Science. We welcome all authors and readers to post your comments and ideas on the blog! If you would like to be an author on this blog, let us know!
The journal Editor is Peggy L. Chinn, RN, PhD, FAAN. Dr Chinn founded the journal in 1978.
