Research Ethics Case Study

marachne · Apr 23, 2009

And here's another example, from my Research Ethics course in my PhD program. Enjoy!

Case Presentation

Rebecca Goldman was a registered nurse working on a doctoral research study. Her background was in hospice and pain management. Her dissertation was an exploration of the experience of individuals enrolled in hospice and their primary caregivers in rural areas. The study was longitudinal, involving participant observation and multiple interviews with caregiver-care recipient dyads as well as the hospice professionals providing care. When meeting participants, Rebecca’s introduction included her background as a nurse but clearly emphasized her research role. All participants were promised confidentiality during the informed consent process.

Over the course of her interviews, one of her participants expressed two strong sentiments: a desire to die at home and a fear of dying in pain. This participant had previous experience caring for others who suffered painful, hospital deaths involving a high level of medical intervention and social isolation. The research participant had liver cancer, which had metastasized to both bone and brain. There was also confusion related to hepatic encephalopathy. The primary caregiver also expressed the desire for his partner to die at home. Up until the time of the disputed event, the primary caregiver had been able to handle most of the caregiving needs; however, he found witnessing his partner’s pain extremely distressing. Rebecca had been interviewing this couple for several months and had developed a comfortable relationship with them that felt equitable and mutual. The participant dyad expressed their appreciation for her “listening ear” and shared a great deal of very rich data.

One day, Rebecca arrived for an interview and found the patient-participant in excruciating pain and acute confusion. The hospice nurse had adjusted his pain medication several times in the prior week, increasing his CADD pump, both basal rate and PCA dose, increasing his oral Roxinal dose, and adding Lidocaine patches to areas where there were suspected pathological fractures. Rebecca found the caregiver at his wits end, because nothing he did seemed to help. The bone metastasis made it almost impossible to move the patient for care; the confusion caused him to try to get out of bed several times increasing the risk of falling. The caregiver had not slept in days, and while hospice offers limited respite, it had not been sufficient to allow the caregiver to catch up on his personal needs. Rebecca concluded that this couple no longer had the resources to continue home care. There is no freestanding hospice in town, but there is a hospital with a respected pain team. With some trepidation, as she felt it was not in her role to make suggestions, she broached the subject of transferring the dying man to the hospital. Upon hearing this suggestion, the caregiver burst into tears and stated that he felt it would be “failing his partner and denying his last wish” to transfer him to the hospital. He also shared that he was never designated as medical power of attorney (POA) and fears that in this conservative, rural area he would be denied access to his partner in his dying days. Rebecca was heartbroken by the situation. She attempted to comfort the caregiver and shared that she understands his concerns because she is a lesbian. She asked if it would be permissible for her to talk to the hospice agency and see what can be arranged. She also indicated that it might be possible that his partner could become lucid enough to grant him POA rights. The caregiver hesitated: among other things, he was concerned about being publicly “out” in this small rural town (although he acknowledged that it is probably one of those open secrets, at least among some of his community) but agreed that it was worth trying. He reiterated, however that he would not agree to have his partner moved unless he felt assured that he would be allowed access.

Did Rebecca overstep her role as a researcher by making any suggestions? Was her self-disclosure inappropriate? Is it appropriate for her to approach the hospice agency? Were her comments about POA within her scope of practice? What should she have done differently? What, if anything, does she need to do now?

Case Analysis and Recommendations

While the main issue here is role conflict, the ethical issues of beneficence and autonomy frame it. While Rebecca’s fidelity to her research role can be interpreted as meaning she must separate herself from her nursing role because it will introduce bias and contaminate her data, others would state that her on-going relationship with these individuals has created a fiduciary relationship and a related “duty to care.” Additionally, even the literature, which cautions nurse researchers to avoid their clinical role, make exceptions for instances when the participant is in a state of anxiety or a life-threatening situation. At this time, it is generally believed that the researcher, as a health care professional must intervene. This description fits this case. In terms of her disclosing personal information, this is in keeping with the relationship established and displays appropriate levels of reciprocity. Regarding her making suggestions regarding POA, this seems outside her scope of practice as either researcher or health care provider. Therefore, the following recommendations are provided:

Having gained permission from the caregiver, Rebecca should approach the hospice nurse and share her concerns and the information she has received from the caregiver.
Rebecca should explain to the family caregiver her limitation regarding assurance of access to the caregiver if his partner is hospitalized, and the limits of her understanding of the mechanics of creating a proxy.
That said, Rebecca is now committed, by her words and actions, to fulfilling her role of advocate and following through to the best of her ability in ensuring appropriate access.
Rebecca needs to document this interaction via memos and fields notes, as well as discuss her thought process and decisions with her dissertation committee. She will have to abide by any decisions they make regarding her course of action.
Any publications involving this data needs to have an explanation of the situation and outcome.

Ethical Essay

“The venue of research provides greater access to participants’ otherwise private lives and thereby presents ethical dilemmas and challenges. The researcher must respect the individual’s privacy and yet prevent harm”

(Locher, Bronstein, Robinson, Williams, & Ritchie, 2006 p. 401)

Role conflict as experienced by nurse researchers appears to be a common phenomenon; however, there appears to be little effort to curtail its occurrence and limited agreement on how to respond to the problem. It is not surprising then, to find researchers in the field confronted with situations that they did not expect and where they are unsure how to act.

It appears there is a broad spectrum of beliefs and approaches to this issue. At one end is the pure researcher, whose adherence is to the researcher role, described as investigational and dedicated to increasing knowledge, collecting and analyzing uncontaminated data, and improving practice (2001; Colbourne & Sque, 2004). Those in this camp caution against falling into traditional nursing roles as it can introduce bias (Colbourne & Sque, 2004).

The other end of the spectrum finds the nurse researcher who never stops being a nurse, and for whom the nursing role is often the paramount duty. These duties are often described in terms of professional responsibility (Beale & Wilkes, 2001; Ulrich, Wallen, & Grady, 2002), professional socialization (Colbourne & Sque, 2004), and/or professional ethics (Beale & Wilkes, 2001; Colbourne & Sque, 2004; Locher et al., 2006; Martin, 1995). Somewhere in the middle are those who see nurse researchers as primarily researchers who, when the situation warrants it, resume the role of the nurse (Colbourne & Sque, 2004; Proffitt et al., 1993; Wilde, 1992; Wilkes & Beale, 2005). While many nursing roles, including advocate, counselor, therapist, teacher and political activist have been cited as part of the nursing role employed by the nurse researcher, the most common role assumed is advocate (Beale & Wilkes, 2001).

Much of the literature discussing role conflict relates to qualitative research. Many authors describe how this combining of roles is a natural outcome of qualitative methodology. They refute the claim of introducing bias. The literature discusses the critical role the interaction between researcher and participant plays (Carolan, 2003; Martin, 1995). This interaction is often described as a reciprocal relationship, generally built on and engendering trust (Borbasi, Jackson, & Wilkes, 2005; Johnson & Clarke, 2003; Proffitt et al., 1993; Sterling & Peterson, 2005), with the interview viewed as a conversation (Borbasi et al., 2005). Personal involvement, self-disclosure, caring, and intimacy are perceived as means by which rich data is acquired, especially when dealing with sensitive subjects (Borbasi et al., 2005; Carolan, 2003; Fitzsimons & McAloon, 2004; Wilde, 1992). In addition to the need to establish trust and relationship, many authors describe the need to include the researcher as subjective self in qualitative research and the incorporation of reflexivity and the “self as instrument” into the process, both of data collection and analysis (Borbasi et al., 2005; Carolan, 2003; Cartwright & Limandri, 1997).

Whether seen as a desired approach or not, mixing, melding, and switching roles does create conflict. The conflicts include an inability to reconcile the two roles (Beale & Wilkes, 2001), let go of the nurse role (Colbourne & Sque, 2004), or juggle the two while attempting to maintain the integrity of the research process (Beale & Wilkes, 2001; Borbasi et al., 2005; Wilde, 1992), and their own perceived role as researcher (Carolan, 2003). The issue arises most commonly when the nurse researcher sees the participant’s welfare as threatened, and despite any inclination to remain neutral, feels compelled to intervene (Beale & Wilkes, 2001; Cartwright & Limandri, 1997; Johnson & Clarke, 2003; Locher et al., 2006; Wilde, 1992). As Martin (1995) describes it, in cases where “the participant’s welfare is threatened…the ‘individual as nurse’ feels compelled to act, and the ‘individual as researcher’ feels constrained from acting to avoid damaging the research study” (p. 44). This situation occurs with even greater frequency when interviews are performed in the participant’s home; involve sensitive subjects, and vulnerable individuals (Cartwright & Limandri, 1997).

An ethical issue that arises from this conflict is between beneficence and autonomy. Or put another way, between confidentiality and duty of care (Beale & Wilkes, 2001). In the face of perceived need, it appears that the nurse role easily trumps the researcher role. As Proffitt et al. (1993) state “Nurses often found subjects with conditions or circumstances that they thought warranted nursing interventions as a higher priority than data collection” (p. 310). Colbourne and Sque (2004) found it was easy for a researcher to slip into the nurse role when encountering a participant who was distressed or in need of information. Adherence to the research protocol was seen as important, but secondary when concern for a participant’s well-being was an issue (Fitzsimons & McAloon, 2004). Nurses found that sustaining the data-gathering role challenged the very essence of their identity as caring professionals. When the participant did not express a concern for their own welfare, or directly ask for information or assistance, the situation was exacerbated. In these situations, and if the nurse researcher felt there were threats to the participant’s welfare, the nurse researcher often felt anxious breaching a participant’s confidentiality to address the perceived need, particularly if the threats to health were not related to the research itself or when the research was observational (Johnson & Clarke, 2003; Locher et al., 2006).

Other role conflict issues relate to the greater ethical issues of confidentiality, autonomy, and beneficence. One often cited is reciprocity and the effect of the relationship between the researcher and the participant on the data gathering process. Because the participants often give a great deal of time and information, and the information shared is often emotionally laden, the researcher may be left with a feeling of indebtedness and a need to compensate for this (Cartwright & Limandri, 1997; Johnson & Clarke, 2003). Another kind of discomfort occurred when the researcher felt they had to limit the aspects of themselves they presented to the participant. This led to a feeling of dishonesty and unnaturalness, which, it was felt, hampered the research relationship (Colbourne & Sque, 2004)

The literature supplies a multitude of solutions to the issue of role conflict, many of which contradict each other. There are those who hold that roles should be kept separate and conflict avoided—that one must keep the focus on the research at hand, remain a researcher and investigator and not take on the role of counselor, educator or preacher, as that would introduce bias (Beale & Wilkes, 2001; Colbourne & Sque, 2004; Wilde, 1992). Others do not see the strict separation of roles as essential—or even possible. Rather they believe it possible to see oneself as both research and nurse (Borbasi et al., 2005; Fitzsimons & McAloon, 2004; Wilkes & Beale, 2005). Fitzsimon and McAloon (2004) state that not only are the roles of researcher and clinician not mutually exclusive, but that it may be beneficial, at times, to allow the two to converge—that it is possible to respond both as a nurse who cares about the participants well-being and a researcher who seeks to analyze the experience. Even those who see the roles as being separate concede that if the participant is in a state of anxiety or a life-threatening situation, the researcher, as a health care professional, must intervene (Beale & Wilkes, 2001; Colbourne & Sque, 2004; Martin, 1995; Wilde, 1992; Wilkes & Beale, 2005). The timing of the intervention is also debated—some saying that it should come at the end of the interview (Beale & Wilkes, 2001; Colbourne & Sque, 2004; Wilde, 1992), while others contend that it is a matter of neither degree or timing. These individuals state that advocacy takes precedence over advancing knowledge, and one should actively utilize one’s nursing skills as the occasion warrants, and in a timely manner (Beale & Wilkes, 2001; Colbourne & Sque, 2004 Wilde, 1992; Wilkes & Beale, 2005). Fitzsimons and McAloon (2004) propose assessing the probability of harm occurring and the potential magnitude of harm before acting. As a further safeguard, some authors suggest enlisting the help of others, either specialists or individuals more versed in the particular issue (Fitzsimons & McAloon, 2004; Wilkes & Beale, 2005). Influencing factors can include the study design and paradigm (Cartwright & Limandri, 1997). No matter what course the researcher takes, it is important that actions come from a position of reflexivity and recognition of one’s own personal concepts and prejudices (Colbourne & Sque, 2004), as well as the ethical framework of beneficence, respect for persons, and justice. One way to balance these ethical concerns is to ask the participant for permission to reveal information, or pass information along for further assistance. Issues of confidentiality and consent maintain their validity, whether viewed from a scientific/rigor protocol perspective or from the ethical perspective of respect for persons. (Wilkes & Beale, 2005).

How nurse researchers present themselves and interact with participants can have an impact on the data gathering process and the study’s results. Some authors suggest the researcher needs to represent themselves honestly. Subterfuge and modified behavior is often apparent to the participant and off-putting. The researcher’s distancing of their self can lead to the participants distancing themselves. Conversely, reciprocity allows for the development of relationship, which is a vital part of the interviewing process. Self-disclosure by the researcher enhances the information exchange and results in more honest and meaningful sharing by the informant (Carolan, 2003; Wilde, 1992). This point is emphasized in the statement “self-disclosure or intervention did not equate to high treason and that it need not invalidate the study” (Colbourne & Sque, 2004 p. 302). Additionally, the issue of secondary gain for both participants does not appear to negate the value of a study. One author comments that benefits accrued on both sides was beneficial in that it created a more equitable situation, eliminating, or at least reducing, the inherent power imbalance favoring the researcher (Wilde, 1992).

Some authors found perceiving the researcher as a nurse enhanced the trust felt by the participants and enriched the sharing of experiences. The relationship can add to the richness and detail of data acquired, as well as deepen the researcher’s understanding of the phenomena (Cartwright & Limandri, 1997). Appropriate interventions by the nurse researcher can have additional positive impacts. Wilde (1992) found that after advice was given, participants would often provide new data and new avenues of inquiry would open up, as well as creating new awareness in the researcher leading to new ways of thinking about a situation.

While owning all of one’s roles and providing interventions can have positive effects, there is also potential for deleterious impact. There are a myriad of potential impacts ranging from unintended consequences, to questions about subsequent data and compromised rigor (Cartwright & Limandri, 1997; Fitzsimons & McAloon, 2004), to loss of boundaries and unintended disclosure (Borbasi et al., 2005), to unintended influence on the informants’ answers (Wilde, 1992). One author recommends that information gained from interactions while in the nurse role should not be considered data for the study (Beale & Wilkes, 2001).

It appears that role conflict and the attendant dilemmas are highly likely to occur when nurses are engaged in research. The question then becomes what is the correct action to take? Two main themes dominated the readings. One related to self-awareness and reflexivity. Researchers need to account for their positions and behavior, and be attentive to how their actions influence the research, the participants, and the researcher (Borbasi et al., 2005; Carolan, 2003). Ways suggested to track this awareness include field notes, memos, discussions with experienced field researchers, regularly scheduled team meetings, debriefing, and accounting for one’s actions in morificecripts (Cartwright & Limandri, 1997; Locher et al., 2006).

The second theme concerns the ethical response to the situation. While historical cautions to remain objective and uninvolved are noted, the majority of authors encouraged action based on general and professional ethical principles. Some spoke from the perspective of the statement from the Declaration of Helsinki ‘The health of my patient will be my first consideration.’ This was interpreted to mean not only protection from harm caused by the research, but also protection of the rights and welfare of participants encountered in the course of the research (Fitzsimons & McAloon, 2004; Locher et al., 2006; Sterling & Peterson, 2005; Ulrich et al., 2002). This beneficence however needs to be tempered with respect for persons and their autonomy. In general, actions to protect and/or ameliorate risks should only be undertaken at the participant’s request. When the participant is incapable of seeking help, either because of fear or because of other limiting circumstances, this stipulation can be modified. In such a case, the individual may be seen as not truly autonomous or competent. At this point, the risks of harm need to be balanced against the possible risks that may result from an intervention (Locher et al., 2006). One way of balancing the concerns of beneficence and autonomy is by sharing concerns with the participant, asking permission to share this information with appropriate care providers, and then sharing the pertinent information (Cartwright & Limandri, 1997). One caution is for the researcher to ask themselves “Is the process by which the decision is made appropriate?” and “Are the reasons for making the decision justifiable?” (Fitzsimons & McAloon, 2004 p. 401).

Conclusion. Investigating this question revealed some of the thinking related to the issue of role conflict, particularly among nurse researchers. At the same time, it sheds light on some of the shortcomings in the current ways that research is conducted and that researchers are trained. The literature discussing this issue is limited and contradictory without adequate discussion or debate (Beale & Wilkes, 2001; Cartwright & Limandri, 1997; Colbourne & Sque, 2004). As is noted by Borbasi et al. (2005), “The increasing number of nurses undertaking field research who report pragmatic, ethical, and epistemological difficulties surrounding the multifaceted nature of the role is compelling” (p. 500). Difficulties can be linked to lack of training and preparation (particularly regarding negotiating access, interviewing skills, and role relationship with participants), supervision, support, and guidelines (Cartwright & Limandri, 1997; Johnson & Clarke, 2003). This situation can be at least partially ameliorated by discussion of situation as they arise with colleagues and mentors. Also needed is better reporting in published literature regarding incidents and ethical issues (Beale & Wilkes, 2001; Cartwright & Limandri, 1997; Colbourne & Sque, 2004). Perhaps most importantly, identifying potential ethically challenging situations during the study design, and developing plans to address these issues should be included in study proposals (Fitzsimons & McAloon, 2004)

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Annotated Bibliography

Beale, B., & Wilkes, L. (2001). Nurse researcher: Always a researcher, sometimes a nurse. Collegian, 8(4), 33-39.

This article describes a qualitative study of nurse researchers’ views of their roles as clinician and researcher. Two approaches to research are explicated. The article is useful in that it illustrates the thinking of working nurse researchers, however the findings are limited by the small sample and limited educational level and experience of several of the respondents.

Borbasi, S., Jackson, D., & Wilkes, L. (2005). Fieldwork in nursing research: Positionality, practicalities and predicaments. Journal of Advanced Nursing, 51(5), 493-501.

This article explores concerns of nurses engaged in fieldwork from a theoretical framework, focusing on ethnographic approaches. The authors do an excellent job of framing the methodological and epistemological context and providing cautions to novice nurse researchers.

Carolan, M. (2003). Reflexivity: A personal journey during data collection. Nurse Researcher, 10(3), 7-14.

Carolan presents a combination of theoretical exploration and personal musing on the concept of reflexivity and issues facing the nurse researcher studying a field of personal and clinical interest. In the process, she provides a good example of both reflection and reflexivity as well as a good working definition of that oft-used and rarely explained term. Translating her personal journey into larger concepts is sometimes a stretch, leaving the reader with more questions than conclusions.

Cartwright, J., & Limandri, B. (1997). The challenge of multiple roles in the qualitative clinician researcher-participant client relationship. Qualitative Health Research, 7(2), 223-235.

The authors use a description of a specific study and the issues it raised to discuss the various relationships researchers and participants engage in. They also provide concrete suggestions for methodological ways to deal with issues of role conflict. While an older article, the concepts presented, as well as the issues raised are still salient.

Colbourne, L., & Sque, M. (2004). Split personalities: Role conflict between the nurse and the nurse researcher. NT Research, 9(4), 297-304.

The lead author of this article describes her personal struggle with reconciling her nurse and nurse researcher roles. The authors offer strong suggestions for how to approach this dilemma. Their model of the differences between the beginning nurse researcher and the experienced nurse researcher is both clear, elegant and sensible. Their arguments are solid, and their definition of reflexivity helpful. The strength of their surety in their suggestions however, leave little room for discussion and debate.

Fitzsimons, D., & McAloon, T. (2004). The ethics of non-intervention in a study of patients awaiting coronary artery bypass surgery. Journal of Advanced Nursing, 46(4), 395-402.

The authors of this article provide a striking case study wherein the project design clearly created problems. Their honesty in sharing such an experience, and the steps they took to correct the situation is commendable. They also present a nuanced argument regarding the deontological and utilitarian positions surrounding their situation. The greatest shortcoming may be in trying to cover too much ground in one article.

Johnson, B., & Clarke, J. M. (2003). Collecting sensitive data: The impact on researchers. Qualitative Health Research, 13(3), 431-434.

The authors of this article describe a study investigating the issues that arose for researchers exploring “sensitive” topics. While issues pertinent to role conflict in field research are well described, nothing is clarified regarding the difference between research in these sensitive topic areas and other sorts of field research. The authors do provide a forceful argument for better preparing clinical researchers for the field.

Locher, J. L., Bronstein, J., Robinson, C. O., Williams, C., & Ritchie, C. S. (2006). Ethical issues involving research conducted with homebound older adults. Gerontologist, 46(2), 160-164.

This article explores a specific research subject population—homebound older adults—and the ethical issues related to their study. It is both more general, as the researchers cross multiple disciplines, and more specific than other articles reviewed, because of its subject population. Published very recently and reflecting the aggregate experience of several experienced researchers, it offers a number of concrete and practical suggestions worth exploring.

Martin, P. (1995). Qualitative nursing research: The issues and pitfalls. Nursing Times 1995, 91(12), 44-45.

This slight and older article adds very little to the literature, however its discussion of “invisible” problem areas is worth noting.

Proffitt, C. J., Byrne, M. E., Namei, S. K., King, M. O., Schmidt, S., & Brott, T. G. (1993). The nurse clinician: Role conflict in research. Clinical Nurse Specialist, 7(6), 309-311.

This older article describes the experience and issues that arose when masters-prepared nurses are used as data collectors for a quantitative study. In contrast to most of the other articles reviewed, it illustrates some of the problems that can be experienced in a quantitative context. It can also be seen as a cautionary tale regarding the use of personnel not well trained and versed in research methods and ethics. This article is very adamant about the need for the researcher to maintain distance and neutrality, possibly reflecting the quantitative approach.

Sterling, Y. M., & Peterson, J. W. (2005). Clinical methods. Lessons learned from a longitudinal qualitative family systems study. Applied Nursing Research, 18(1), 44-49.

This article describes a study of African American families where the researchers had a high level of involvement with the participant. The fieldwork involved repeated visits to participants within fluid family systems. Several research issues are discussed, including that of conflicting roles. Practical, concise recommendations are made with a strong patient advocate bias.

Ulrich, C. M., Wallen, G. R., & Grady, C. (2002). Research vulnerability and patient advocacy: Balance-seeking perspectives for the clinical nurse scientist? Nursing Research, 51(2), 71.

A very brief editorial, the authors urge nurse scientists to maintain advocacy as a centerpiece to their practice. Their conceptualization of vulnerability doesn’t add anything to their argument.

Wilde, V. (1992). Controversial hypotheses on the relationship between researcher and informant in qualitative research. Journal of Advanced Nursing, 17(2), 234-242.

An older, reflective piece, the author describes the theories she developed as a result of a qualitative study involving nurses. This article provides an excellent example of the impact personal knowledge, experience, and identification with the research participants can have on the researcher. Many of the points Wilde makes are reflected in later works. Her manner of stating her discoveries as hypothesis is a useful technique.

Wilkes, L., & Beale, B. (2005). Role conflict: Appropriateness of a nurse researcher's actions in the clinical field. Nurse Researcher, 12(4), 57-70.

This article describes a study performed with nurse researchers to explore their responses to vignettes describing the actions of nurses conducting clinical research. Building on a prior study cited above, the authors avoid one of the limitations of the prior work by purposefully sampling experienced nurse researchers. The vignettes were based on actual scenarios, lending greater credence to the study. Their framework of four decision-making styles makes sense, but the results feel thin and somewhat limited. The four vignettes could be a useful tool in training future nurse researchers.