Volume 6, No. 3, Art. 35 – September 2005
"No thank you, not today": Supporting Ethical and Professional Relationships in Large Qualitative Studies
Lisa J. Blodgett, Wanda Boyer & Emily Turk
Abstract: Based on an ongoing research study of the development of self-regulation in early childhood (BOYER, 2005a, 2005b; BOYER, BLODGETT, & TURK, 2004), this work explores both the ethical and professional considerations of participant sampling in a large qualitative study. The study involved 146 families of preschool children and 15 educators across 7 preschools. Data collection included 30-45 minute audiotaped individual interviews, twenty-eight 90-120 minute audiotaped focus group sessions, and 30 minute videotaped footage of each child's natural play. The challenge of gaining informed consent and ongoing participation within a large study has been considered in the literature (GALL, GALL, & BORG, 2005). In qualitative studies the participants are selected purposefully because they will be particularly informative about the topic (CRESWELL, 2002). This is a challenge for qualitative researchers seeking maximal participation and large sample sizes because volunteer participants "tend to be better educated, higher socioeconomically, more intelligent, more in need of social approval, more sociable, more unconventional, less authoritarian, and less conforming than nonvolunteers" (MCMILLAN, 2004, p.116). This paper provides a response to these sampling challenges and advocates for the building of community relationships based on ethical, interpersonal and professional foundations.
Key words: ethics, qualitative research, power, informed consent, vulnerable populations, insider-outsider relationships, self-regulation
Table of Contents
1. Introduction
2. The Research Context for Ethics
3. Ethical Guidelines in Context
3.1 The historical context of ethical guidelines
3.2 Current ethical standards related to sampling
4. Ethical Concerns: Putting Ethical Solutions into Practice within Large Qualitative Studies
4.1 Obtaining free and informed consent
4.1.1 Background
4.1.2 Putting it into practice
4.2 Vulnerable populations
4.2.1 Background
4.2.2 Putting it into practice
4.3 Balancing the insider and outsider roles
4.3.1 Background
4.3.2 Putting it into practice
5. Recommendations for Supporting Ethical Practices with Large Qualitative Studies
From our experiences within a large qualitative research study, we present several sampling and procedural considerations that may be relevant to others' research, such as participants' concerns with significant time commitments to the project and with our request for videotaped observations of young children. Also, as other researchers commonly encounter, we were requesting to enter into a community of which we were outsiders, asking for the support and participation of vulnerable populations. With the large participant numbers in our qualitative study we recognized that many of the ethical issues expressed by ROTH (2004) had the potential to become more complex and yet gratefully, they did not. We drew upon compassionate interactions to prevent and tackle problems with informed consent, participant harm, and power-over situations. Our contention is that researchers must acknowledge the "socially constructed" ethics within qualitative research, by considering the relational issues that are part and parcel of human research (ROTH, 2004, Paragraph 18). [1]
This paper investigates the cornerstone of our humane interaction with participants with an examination of (a) the historical significance and ethical responsibility of gaining informed consent, (b) societal and individual concerns commonly expressed by participants before, during and after giving consent to participate, and (c) the human mandate that we develop and maintain ethical and professional interpersonal relationships through respectful interaction that supports diverse participant representation within a large sample. This discussion of ethical practices in qualitative research focuses on issues related to gaining informed consent, working with vulnerable populations, and balancing the researcher's insider and outsider status. [2]
2. The Research Context for Ethics
This examination of ethical issues in sampling is based on the large qualitative study entitled "A Foundational Measure of Early Childhood Development of Self-Regulation," developed by Wanda BOYER, Primary Investigator. This large multi-phased qualitative study involved a total of 317 individuals including parents, early childhood educators (ECEs) and children, from seven preschools in the Canadian Pacific Northwest. The first phase of the large-scale research study involved an initial descriptive research study (BOYER, BLODGETT, & TURK, 2004), which used videotaped observations of children, and adult interviews and focus groups to explore how parents and educators assist their preschool children in acquiring self-regulation skills. This first phase also involved a second qualitative phenomenological research study by BOYER (2005a) which entailed listening with care to the voices of families and educators in order to learn how they actively engage in helping their young children become independent and responsible for their own behaviors, problem-solving skills, language, social interactions, emotions, and moral decisions. [3]
The second phase of this research study involves the development of a grounded theory about the self-regulation of preschoolers and this theoretical framework is supporting the development of an observation tool to help teachers and parents understand how, when, and why children ages 3-5 learn to regulate their physical, cognitive, linguistic, social, emotional, and moral responses in natural preschool and home interactions. Participants in this study included 15 educators and 146 families of preschool children across seven preschools. The participating families were selected based on purposeful sampling criteria. The parent participants gave their voluntary and informed consent. to participate in a 30- to 45-minute audiotaped interview, and to participate in a 90- to 120-minute audiotaped focus group interview with other parents from their preschool community. In addition, the parents agreed to allow their preschool children to be videotaped for 30 minutes during natural play and the children gave their daily consent to be videotaped according to the Human Research Ethics Board directions. The early childhood educators also gave informed and voluntary consent to participate in a 30- to 45-minute individual interview and secondly, to participate in a 120- to 180-minute audiotaped focus group with other early childhood educators involved in the study. [4]
The seven preschools, from urban and rural locations, were located in churches, community centers, and elementary schools. The programs were varied in structure with full day and half-day programs, mixed and separate age groups, and all the preschools were co-educational. These participating preschools included parent co-operative and those preschools without parent involvement, religious and non religious settings, and represented a wide range of neighborhoods and socioeconomic classes and diverse self-designated cultures as discussed in BOYER (2005b) (e.g., Asian, Filipino, Mexican First Nations, Métis, South East Asian and Bi-racial cultures including African-American, Arabic, Brazilian, Chinese, Filipino, Ghanian, Hispanic, Israeli, Japanese, South East Asian, and South American). [5]
3. Ethical Guidelines in Context
3.1 The historical context of ethical guidelines
The historical context and current standards protects the rights of and guides the responsibilities of the participants and the researchers who serve the community. This formal guidance and governance of research ethics began with the creation of the Nuremberg Code in 1947. This code of ethics arose from the criminal proceedings against German doctors who worked under the Nazi regime. In the name of science, these physicians conducted horrific medical procedures on concentration camp prisoners without their consent and systematically euthanized vulnerable populations that the regime deemed inferior and undeserving of life (UNITED STATES HOLOCAUST MEMORIAL MUSEUM, n.d.). In 1953 and subsequent to the Nuremberg Code, the American Psychological Association presented a code of ethics, which later grew to become the chief set of ethical regulations used in social sciences research (ANDERSON & ARSENAULT, 2000). In 1964, the World Medical Association introduced the Declaration of Helsinki, to preside over the ethics of human and animal biomedical research (UNITED STATES FOOD & DRUG ADMINISTRATION, 2001). The necessity of this institutionalized ethical governance was confirmed in the 1970's when the New York Times exposed two unethical experiments that were conducted in North America (see ANDERSON & ARSENAULT, 2000). In response to these and other ethical wrongdoings, public and professional organizations have endeavored to protect research participants from being exposed to the unrestrained or self-interested power of "experts." Acting as advocates, research ethics boards presently operate to support the rights and responsibilities of both the researcher and the participants during the research process. [6]
The development of these ethical codes has represented a shift from "a self-regulated moral arena into a multi-faceted legal arena" (ANDERSON & ARSENAULT, 2000, p.17), where regulatory bodies govern and guide interdisciplinary research. These bodies have drawn both researchers' and participants' attention alike to the ethical issues that must be a central consideration of research processes. Today, the Tri-Council Policy Statement from the Canadian Interagency Advisory Panel on Research Ethics (PRE) regulates ethical practices for human research in health, science, engineering, social science and humanities research. The goal of the Panel on Research Ethics is to express the values of the research community, to verify that research meets moral imperatives, ethical principles and the law, and to "ensure a more general accountability to society" (PRE, 2003, p.i.8). [7]
3.2 Current ethical standards related to sampling
The Tri-Council advises that "the researchers' commitment to the advancement of knowledge also implies duties of honest and thoughtful inquiry, rigorous analysis, and accountability for the use of professional standards" (PRE, 2003, p.i.8). Advocating for humanity in research, the Panel on Research Ethics describes each of its guiding principles as the researchers' respect for individuals, and ethical and moral principles. Specifically, the Tri-Council's principles are listed as: respect for human dignity, respect for free and informed consent, respect for vulnerable persons, respect for privacy and confidentiality, respect for justice and inclusiveness, and the minimizing of harm and maximizing of benefits. Unquestionably, the primary principle of research ethics is to find "morally acceptable means" to achieve "morally acceptable ends" (PRE, 2003, p.i.4). That is, researchers are obliged to avoid unnecessary risks to participants, including the use of deception, and researchers must balance potential harm with the scientific and social significance of the research goals. Additionally, the researcher must consider and prevent ecological and cultural harms that may occur as a result of research, especially with respect to the exploitation of vulnerable populations. Using a subject-centered approach to research, ethical guidelines ensure that participants shall not be treated as a means-to-an-end, whereby the interests of research are given more primacy than the needs of the population or community. [8]
4. Ethical Concerns: Putting Ethical Solutions into Practice within Large Qualitative Studies
The qualitative researcher in particular, faces challenges concerning ethical and professional principles due to the interpersonal nature of the relationship between the researcher, the participants and the context within qualitative research. Of special concern are (a) the free and informed consent process, (b) the inclusion of vulnerable populations, and (c) the researcher's insider and outsider status. These issues have been addressed and discussed in interdisciplinary human research with regard to ethnographic, case study, and other qualitative methodologies. We explore these ethical considerations within our own sampling process. [9]
4.1 Obtaining free and informed consent
The Tri-Council argues that free and informed consent is "at the heart of ethical research" (PRE, 2003, p.2.1). To obtain ethical and informed consent, the researcher must candidly describe the research purpose and procedures, report foreseeable risks and expected benefits, offer to answer questions regarding the procedures, and clearly explain that participation is voluntary and that participants have the right to discontinue at any time (ANDERSON & ARSENAULT, 2000). The Tri-Council warns that rushing the initial informed consent or "treating it as a perfunctory routine" in fact violates the researcher's respect for participants and will certainly cause subsequent problems within the research process (PRE, 2003, p.2.8). Researcher or participant must not regard free and informed consent as a one-time event but as an ongoing process. As such, the participant must be made fully aware of his or her power to withdraw from the research at any time in the process. [10]
When obtaining informed consent, researchers must also be thoughtful to address participants' societal and personal concerns, such as privacy and confidentiality issues, that are common aspects of qualitative data collection and analysis (BARRETT, 2000). Often participants lack experience with research and therefore may not perceive or understand the issues, risks and benefits in the same light as the researcher. However, a good researcher will anticipate and address these concerns at the beginning of the process to help alleviate participants' mistrust and fear of research. MARACEK (2003) notes that the consent process can be complicated further because qualitative data collection is not clearly limited to the processes that were outlined in the consent letter, as information from field notes and informal conversations with participants can find their way into the final report. In particular, qualitative researchers must be careful to support participants' rights to ongoing consent since qualitative data collection may have a longer duration, and may include such ambiguous data collection processes. [11]
Ultimately the consent process exists to protect individuals who do not want their thoughts and actions to be examined and possibly criticized (COUPAL, 2005), and this can be of greatest concern in research on sensitive topics or with power-less and vulnerable populations (JOKINEN, LAPPALAINEN, MERILAINEN, & PELKONEN, 2002). For example, health care patients, children, or the elderly may be especially at risk of feeling obliged to consent, in the face of a "power-over" relationship (DEMI & WARREN, 1995; LAROSSA, BENNETT, & GELLES, 1981). Although the researcher's authority or influence can complicate the consent process, individuals can also feel obliged to consent because of pressure from peers or expectations from the agency or community where the research is taking place (ANDERSON & ARSENAULT, 2000). As a result of inducement or authority issues, participants may feel unable to refuse consent or unable to withdraw consent as the research progresses. Therefore, researchers must be attentive to participants' actions that may signal a failure to consent, such as dodging recruitment or avoiding the data collection situation (BARRETT, 2000). [12]
Whether the qualitative study solicits a small, purposive sample or a large sample with maximal participation, the researcher is seeking participants who are representative of the population. Qualitative researchers may need particularly effective recruitment strategies because the validity of the work is dependent on the number and quality of cases or observations. MCMILLAN argues that volunteer participants "tend to be better educated, higher socioeconomically, more intelligent, more in need of social approval, more sociable, more unconventional, less authoritarian, and less conforming than nonvolunteers" (2004, p.116). Parents who refuse the participation of their children in research projects have children who experience "more problematic relationships with peers, academic problems, attentional difficulties and depression, and aggressive behavior than children whose parents gave them permission to participate" (DROTAR & RIEKERT, 2000, p.81). In light of this, researchers are compelled to recruit volunteers who may not ordinarily participate in research. COUPAL suggests that "not all potential participants value their own experience sufficiently to volunteer their contributions," (2005, Paragraph 30). In contrast, some individuals aren't interested enough to "proactively pursue" participation, and this may be due to a lack of confidence or resources (SIXSMITH, BONEHAM, & GOLDRING, 2003, p.585). This creates a larger problem for the researcher, as participant self-selection in the consent process can create sample participation biases (DROTAR & RIEKERT, 2000). Therefore, it is important for the researcher to consider times and places when people will be available for recruitment and first contact, in order to ensure that certain populations are not systematically excluded. [13]
SIXSMITH et al. (2003) detail their process of gaining entry into an underprivileged neighborhood, explaining the importance of gatekeepers' for establishing credibility and a connection to the community. Many researchers find themselves "at the mercy" of key personnel such as doctors, teachers, social workers, school administrators and program directors. As such, BARRETT (2000) suggests that the researcher develops a rapport with these individuals, treating them with courtesy, providing them with clear information, and being open to address their concerns and questions related to the research. The magnitude of the gatekeepers' influence is in their ability to grant or block access to members of the community or even the community as a whole (RISKIN, 1976). LYNCH, GLASER, PRIOR and INWOOD (1999) suggest that parents, wishing to protect their child from the risks of research, may also function as gatekeepers by deciding not to participate on behalf of their child. The danger that gatekeepers may limit or bias the sample is especially pertinent in research with vulnerable populations, such as children or elderly participants (CORRIGAN, 2003; JOKINEN et al., 2002) who may lack the capacity to act independently and to provide informed consent. However, GOLDSTEIN, SAFARIK, REIBOLDT, ALBRIGHT and KELLET describe the essential and positive role of these key personnel who act as "guides" to the community, "assistants" in recruiting and data collection, and "interpreters" and "historians" who can provide insights and knowledge about the community and participants (1996, p.306). These gatekeepers may help to bridge the interpersonal gap for the researcher who is entering the community as an outsider. [14]
4.1.2 Putting it into practice
Identifying and respectfully interacting with key personnel, or gatekeepers, is very important as is recognizing the power hierarchy you are entering into within the community. It seemed clear enough to us that in order to begin collecting the data we needed to gain the support of ECE's, program directors and/or presidents of the parent groups in order to carry out our research study in the preschool and gain access to the parents and the children. We discovered that the gatekeeper's sphere of influence may be geographically wide, as directors and presidents act not only as gatekeepers of their own preschools but they also have a connection to, and influence with, other preschool communities. We also recognized that it is an oversimplification to consider administration as the key to entry into a community site. We were introduced to the silent partners or influential parents in the preschools who unobtrusively supported the study and conveyed their support to other parents who in turn sanctioned the research study. Why is knowledge of the community power hierarchy important? In order to voluntarily consent, parents, children and early childhood educators needed to know that we supported their individual decision to participate or not to participate regardless of the preschool's administrative decision to participate. There is a difference between community consent and individual free will. Even if father X or early childhood educator R had sanctioned the study, we made an effort to indicate that this should not influence parent J's individual decision to participate. [15]
As part of gaining informed consent, we endeavored to make our research accessible to every parent. We understood that we needed to go beyond information packages and informational letters to recruit our participants, who are busy parents of preschool children. We needed to reassure parents that we respected their limited time, and explained the time commitment we were requesting for their participation. During the initial training session, the research team reflected on what it must be like to be busy parents and educators. We used our empathic skills as a problem-solving tool that allowed us to take the perspective of our participants to "walk in their shoes and feel their pebbles," imagining what it must be like to be a busy parent of a preschool child or a preschool educator who is being asked by high and mighty researchers to give up free family time to participate. We reflected on their gift of time and it softened our hearts, and so we got down to the business of meeting participants' human needs—"What is this study about?, How can I make time?, How will the information be used and for how long?, How will you use the videos? What if I can't participate in the study even though I told you I would?" We didn't feel threatened by the questions because we had expected them and we worked to find solutions to the issues and challenges that would maintain the dignity of our participants and ourselves. [16]
To obtain research data that was as varied as it was rich, we understood that we needed to seek out families who live under very different circumstances from each other, and who do not often engage in research. Recruiting a diverse population meant extra time and money, albeit very well spent. We took the extra time to recruit in diverse communities, making face-to-face contact to obtain preschools, which together represented a wide range in socio-economic status and culture. After working to obtain this diversity of participants, we realized how tempting it is for researchers to limit themselves to participants who are easily accessible and who quickly consent. However, having made the ardent effort to talk to each parent, we also appreciate how meaningful and valuable it is to garner these participants' voices. It was important to ensure that every parent in the participating preschool class was given the opportunity to receive a personal explanation of the study, to ask questions, and to choose to consent. For example, when we needed to communicate with families who did not speak English well enough to provide consent, we searched for translators to orally explain the letter of informed consent, and to assist in an interview and focus group session with parents. [17]
To ethically gain consent for children as participants, we needed to approach both the child and his or her parents. Here, we faced parents' understandable fears about the use and storage of video data. Getting parents on board to allow video footage of their children has become more problematical in recent years as technology's arms are spreading further and faster. We approached this delicate task by being explicit about the video process and use of the footage within the letter of consent and in our explanations. We were diligent about reassuring parents of our strict confidentiality procedures, going beyond just providing a copy of the letter of consent by taking the time to personally explain the study. The next step was to ask the children themselves, using an age appropriate script, for permission to videotape their play. However, because our study recorded children playing naturally, other children whose parents did not sign up for the study would inevitably be recorded in the picture at one time or another. We realized that, to overcome this problem, we needed to develop a parent consent form with regard to the children who were not participants in the study yet who would be involved in the natural play. By developing a background consent form we were able to protect the vulnerable nature of children by getting approval to tape them, even in the background. Naturally, these children were also asked if they would mind being in the background of child X's videotape. [18]
Obtaining free and informed participant consent also means a commitment to achieving ongoing consent. Consent is not a one-time process. We felt it was important to be transparent about our procedures and intentions as we worked within the preschool environment. For example, parents would commonly stop, observe and ask questions during the videotaping. In fact as you play the videotapes of the children you can hear our responses to parents' queries about "How are things going? Do the children seem to mind the video camera?" Although children were read a scripted inquiry for their participation, children asked questions too. In their own way they were trying to choose if they wanted to give their free consent. "When are you taping me? Who is in the picture now, can I see? Am I in the picture?" Children were allowed to look at the preschool action through the viewfinder. This transparency and goodwill allowed the children to feel more comfortable about the process because they saw that, "oh, that's just X playing." [19]
Throughout the ongoing consent process, we worked to demonstrate our trustworthiness and goodwill. When parents indicated that they would not participate, we took a moment to thank them for thinking about our study in a positive light and maintained good-natured interactions with these parents as we worked in the preschool. Parents could be confident that if they asked for their child not to be videotaped we would respect their wishes, and they were able to witness this process within the preschool. This demonstrated to the preschool community members that our warmth was genuine, consistent and not conditional upon their involvement. In two cases we were confronted with an individual's strong aversion to research, and although this attitude was disarming to us, we avoided anger and resentment by simply agreeing with them and their decision to not participate. In another situation, on the day following her interview, a parent expressed that she felt "uncomfortable with how she had described her child" and requested that her contributions be withdrawn from the study. Of course we inquired if she was willing to retry the interview, but in the end, we felt that we valued both the participant and our work by respecting her wishes to withdraw. When parents called to explain that they were "having family problems" and that they no longer had the time to participate, we reassured them that they could leave the study with no ill feelings on our part, and we honestly wished them well. This does not mean that we were not disappointed at times, it simply means that we "got over it" and continued to concern ourselves with the parents', educators', and children's comfort during the research study. This sensitivity to the wishes of the parents was sometimes demanding but we left each preschool community with positive feelings that were shared by the participants. In fact, one year later, we still receive emails notifying us of changes in contact information. Our community of preschools still wants to stay connected with us. [20]
When researchers attempt to recruit a diverse sample of the population, they may find themselves soliciting individuals, communities and cultures that would be considered "vulnerable" and are generally unfamiliar with research. In a review of literature, we have found a wide range of research involving "vulnerable" populations such as the elderly, disabled, terminally ill, victims of crime, visible and cultural minorities, homeless and low SES communities, children and families (DECLERCQ, 2000; EAVES, 1999; FEW, STEPHENS, & ROUSE-ARNETT, 2003; GOLDSTEIN et al., 1996; SHAW, 2003; WRIGHT & FLEMONS, 2002). Although it might appear odd to include families in this list of vulnerable populations, researchers are asking participants to open their private lives to examination. [21]
The decision-making capacity of children is a central concern within sampling and data collection, and researchers need to act ethically to obtain children's active consent. Researchers must make every attempt to ensure that children have real autonomy in making choices about participation and must be sensitive to the way in which research is explained to children (see the United Nations' Convention on the Rights of the Child, UN, 1989). In a review of research involving vulnerable children, LYNCH et al. (1999) explain that the ethical recruitment of children requires the researcher to be explicit about the nature of the research, to involve intermediaries in obtaining consent, and to require participant opt-in instead of opt-out situations. JOKINEN et al. (2002) also suggest that researchers must be sensitive to children's rights and to their ability to consent, as they may indirectly refuse consent by giving very brief answers, by avoiding the situation or by displaying discomfort. In response to the ethical issues of research with children, GRAUE and WALSH conclude that obtaining consent from children requires "permission that goes beyond the kind that comes from consent forms. It is the permission that permeates any respectful relationship" (1998, p.56). [22]
As mentioned within the discussion of consent, an important segment of the population may not recognize the worth of their contributions and experience, are not familiar, or may even be fearful of research, and for that reason may decline participation. Some of these individuals may not have the language to understand the goals of the research and therefore may not have the language to refuse the zealous researcher. For these reasons, particular attention must be paid to informed consent when recruiting and working with vulnerable populations. CORRIGAN (2003) suggests that vulnerable individuals be given ample time to consider their decision to consent, and that this consent should be continually confirmed throughout data collection. We must be conscientious about providing participants with enough information so that they are able to understand why they would want to participate, as well as to make an informed decision to refuse consent. This may require the researcher to provide translation, to read the letter of consent aloud, or to give a clear and uncomplicated explanation of the letter of consent. In his work with homeless populations, Ian SHAW (2003) cautions that researchers must be willing to allow vulnerable individuals the right of refusal at first contact, because of their lack of power in the situation, and the possibility that they may be less able to articulate their needs and concerns. On the other hand, SIXSMITH et al. (2003) recount the importance of making personal contact with participants within vulnerable communities to support participants' continued engagement in the research process. They found that impersonal information pamphlets and questionnaires were less successful in building mutual respect, giving the researcher credibility, and in reducing participants' anxiety and distrust, than direct, humane contact. [23]
On the whole, these researchers seem to suggest that in order to study participants' experiences, it is essential that researchers demonstrate compassion and sensitivity to individuals and the community. For example, LAROSSA et al. (1981) and EAVES (1999) both reflect on the difficulties of scheduling with families, and suggest that flexibility of time and convenience and familiarity of location was key to gaining and maintaining participant involvement. Additionally, GOLDSTEIN et al. (1996) mention the importance of a "fit" between interviewer and participants in terms of age, gender, culture and knowledge. SIXSMITH et al. explain that, within their study of impoverished neighborhoods, an understanding of the participants' circumstances and concerns helped them to "build a bridge" to the participants' lives (2003, p.586). [24]
4.2.2 Putting it into practice
In qualitative research we ask participants to share a piece of their lives with us. Such personal offerings can often leave families feeling open to criticism and this can often make it difficult to recruit families. Through respectful and compassionate interactions with families, their concerns about privacy and busy schedules may be eased. Being respectful of parents' schedules helped the participants to feel valued and consequently more open to communication. Many of the parents worked full time and therefore were not available at the preschool drop-off and pick-up times when we were recruiting and making face-to-face contact. In such cases, we utilized important links with the child's caregivers to relay information to parents and followed up with phone calls to speak to parents directly. During our process, we worked to be sensitive to diverse family circumstances, such as working parents, single or separated parents, or the involvement of extended family or day-care providers. Our home phone numbers and e-mail addresses were provided to families in order to demonstrate our recognition of their needs and to be available whenever they had questions. In this way, the parents could reply when it was convenient for them, instead of being obligated to respond to our phone calls at "meal time," "nap time," or when they were "on their way out the door." In addition, to respond to the needs of working parents and families who could not afford childcare, we conducted interviews in locations and at times that were convenient for the parents, and we also offered free, onsite childcare during interviews. We feel strongly that this service helped capture a greater variety and a greater number of families. In addition, we found that through our process and particularly with the focus group design, we helped bring participating families together to build and support a sense of community. This was a rewarding experience for both the participants and researchers. [25]
In working with diverse and sometimes vulnerable populations, we recognized the potential for authority and power-over issues during the consent and data collection processes. To ensure free and ongoing consent, parents were continually informed of their control over withdrawal and of their power to decide not to answer questions. We saw that some parents were nervous or shy about asking questions and about providing consent, so we gave them time and space to make decisions about participation. After receiving consent, we provided them with a carbon copy of the letter of informed consent to reread at a later time, or to review with the input of friends or family members. In one location, we had a very young mother who was apprehensive about being part of a research study so we approached her with an easy friendliness to help break down barriers and relieve preconceptions about researchers. Also, the very nature of qualitative research facilitated this process as we told potential participants that this study was about listening to their voices and we reinforced that there would be no "right" answers to our questions. Their thoughts, whatever they were, were what we wanted to hear. This was tremendously appealing to participants and helped ease fears for many who were apprehensive about research. During the interviews, we handled the authority issue with environmental and nonverbal elements, such as allowing participants to sit in the "office chair" and ensuring that participants were interviewed in a familiar and private location. Above all, we recognized and conveyed our value for the parents' and educators' voices, and our respect for their expertise regarding their children. Just as SIXSMITH et al. (2003) proposed, our reflection upon, and empathy toward, these vulnerable participants' needs helped us to "build a bridge" to their lives (2003, p.586). [26]
Ethics boards are concerned about the vulnerability of children as participants in research since they are not able to fully comprehend the goals or implications of research. Having children as participants requires sensitivity to their age and development and, as we worked with the children, we were careful to respect their rights to consent. As mentioned earlier, we used an age-appropriate script to explain our intentions and we took the time to answer the children's many questions about the videotaping. In accordance with the suggestions of JOKINEN et al. (2002), we were observant of the children's nonverbal expressions of comfort and consent. For example, we casually watched the children on the first day of observation at the preschool, and were able to pinpoint children who were shy or more outgoing. In order to reduce the impact of the researchers' adult authority, we considered the children's temperaments by first asking confident children for videotaping permission, giving the slow to warm children more time to "get used to" the videotaping and the presence of "visitors" in the classroom. We also watched children to note their daily level of activity and engagement to ascertain and support each child in their comfort for that day. Some days, children would come in wanting to be "a star" and other days saying "no thank you, not today." [27]
4.3 Balancing the insider and outsider roles
Naturally, the qualitative researcher is eager to gain access to participants and works to gain trust and credibility within the research environment. The qualitative researcher enters into a blurred relationship with the participant acting both professionally and personally, "being at once the 'snooping stranger' and the 'good friend'" (SHAW, 2003, p.14). This requires the researcher to constantly renegotiate an insider- outsider status in the community (SIXSMITH et al., 2003). JOKINEN et al. (2002) suggest that the researcher can create a nonhierarchical relationship during recruitment through his or her manner of approaching and meeting participants. Qualitative research provides many opportunities to interact with participants in an informal manner within the research context. Researchers benefit from "being there, being seen" as these informal conversations are occasions to gain participants' respect, to encourage participants' engagement in the research, and to gauge how the research is perceived by the participants and the community (SIXSMITH et al., 2003, p.586). However, the researchers' role may become unclear to the participants as a result of these interactions. The researcher must conscientiously act ethically and professionally within every interaction, while balancing these insider and outsider roles. The maintenance of this balanced relationship with participants is key to meaningful data collection (JOKINEN et al., 2002). However, ethical issues will more likely emerge when these boundaries are obscured. [28]
A balanced insider-outsider role is central to successful interviewing, where the quality of the participant's contribution is founded upon his or her view of the researcher as credible, trustworthy and warm. When the researcher hopes to acquire a glimpse of the participants' lived experiences, trust should be allowed to build slowly, requiring sensitivity and empathy toward participants' needs (WRIGHT & FLEMONS, 2002). SIXSMITH et al. (2003) observed that positive initial contact with participants encouraged their further participation in data collection, because participants felt informed and assured about the process and the trustworthiness of the researchers. FEW, STEPHENS and ROUSE-ARNETT (2003, p.209) argue that the insider status is never an "unchallenged location" and they explain that the interviewers' clothing, speech and body language can have an impact on participants' reluctance. Other qualitative researchers have touted the significance of a safe, familiar and comfortable setting for conducting interviews, which creates an atmosphere of trust and which ensures that the participants feel like the authority on their experiences (JOKINEN et al., 2002; LAROSSA et al., 1981). Participants are often encouraged to take the lead in the discussion but WRIGHT and FLEMONS caution that the researcher must not "let participants forget that she was visiting as a friendly researcher, not as a curious friend" (2002, p.264). Although the benevolent researcher works to express trustworthiness and compassion, the participant can consequently feel unable to withdraw consent or to refuse to answer interview questions within this friendly relationship. Additionally, within this safe context, the participant may disclose more than he or she had planned (ANDERSON & ARSENAULT, 2000; LAROSSA et al., 1981). SHAW (2003) argues that researcher-participant interactions in qualitative research should entail an equality of power, where the participant maintains decision-making control for providing information. Ultimately, the data collection process should involve an exploration of topics that both researcher and participant deem important (WRIGHT & FLEMONS, 2002). [29]
COUPAL (2005, Paragraph 17) believes that a researcher who has a connection to the community "can develop a greater understanding of the experiences and social realities of the members of that community… result[ing] in greater levels of trust." In this way, as the researcher builds positive interpersonal relationships, and takes an insider's role, participants may disclose private information because of this trust. However, participants must feel comfortable with how the researcher (as an outsider) will handle the use of the information. In fact, SIXSMITH et al. suggest that participants might even feel trust and reassurance because of the researcher's outsider status and they may therefore divulge personal information that they expect to be treated confidentially. In vulnerable populations, participants' confidential and personal disclosures might include details of abusive relationships, financial problems, family stresses, health and legal issues, or child custody concerns. Qualitative researchers face several dilemmas with regard to participant harm in the use and reporting of these findings. Because of the nature of qualitative research, participants might be asked to provide personal stories that may be reported with substantial detail within narrative qualitative reports. As it is a challenge to ensure anonymity for groups or communities in reported results, it is sometimes the case that participants feel some regret in disclosing private information to researchers when they "recognize" themselves in the final report, or when they tell more than they had planned (ANDERSON & ARSENAULT, 2000; LAROSSA et al., 1981). The researcher must be cautious with revealing these details, as participants may not have fully understood how the research information would be used, or they may have expected that the researcher would not recount certain pieces of their stories. As a result, WRIGHT and FLEMONS discuss the importance of "relational integrity" (2002, p.267), where the researcher holds the relationship with the participant to be inviolable within the entire research process. They suggest that the "needs of the study had to be balanced against and considered secondary to the needs of the [participants]" (WRIGHT & FLEMONS, 2002, p.264). Therefore, during analysis and reporting, the researcher must be cautious to take a compassionate approach with participant's private stories, since the emic perspective of qualitative research may often include a moral stance (ANDERSON & ARSENAULT, 2000). SHAW (2003) suggests that, in research with vulnerable populations, the researchers' compassionate and respectful goals should lead to interviews with a positive focus, objectives to benefit the population with the research results, and transparent intentions for the research data. [30]
JOKINEN et al. (2002) discuss the complexities of the researcher's role and responsibilities, especially within research involving vulnerable populations. Participants may formulate hopes for outcomes that are not discussed during the consent process, such as anticipating benefits from the presence of an "expert" (ANDERSON & ARSENAULT, 2000; GOLDSTEIN et al., 1996). During interviews and focus groups, participants may seek advice for problems or voice their expectations for assistance from researchers. DECLERCQ commented that her participants, who were nursing home patients, often seemed to hope that the researchers would be able to help with their situation, "putting a lot of trust in me and at the same time burdening me with a responsibility I did not want" (2000, Paragraph 7). Several of the qualitative researchers in our literature review have commented on the importance of defining the role of the researcher as "an empathic observer" (GOLDSTEIN et al., 1996, p.317), as "a friendly researcher, not as a curious friend" (WRIGHT & FLEMONS, 2002), or as "a valuable person to act on their behalf so that their voice would be heard" (JOKINEN et al., 2002, p.169). We must be thoughtful about our own intentions and responsibilities, and we must be sensitive and clear about our roles to the participants because any ambiguities in this relationship relate to the integrity of informed consent. [31]
4.3.2 Putting it into practice
The researcher's professional and interpersonal responsibility for balancing an insider and outsider status is at first apparent as the researcher attempts to gain entry into the desired setting. At first, you are a complete outsider seeking to be allowed a glimpse into the participants' world. Once the ECE or other gatekeeper allowed us into the preschool community, it was our job to balance our status between insider and outsider. This meant attaining a level of ease and friendliness without abandoning our professionalism. Our relationship with the ECE grew as we engaged in informal, professional and personal discussions throughout the day. Building this positive rapport with ECEs proved invaluable to attaining an insider and outsider equilibrium. For example when we first arrived at the preschool, the ECE introduced us to the parents, which helped to convey the legitimacy of our presence and our research. Additionally, some of the educators posted signs on our first day of recruitment to welcome us and concurrently, inform parents that we were sanctioned by the preschool. Therefore, our relationship with the ECE helped to eliminate anxiety around outsider status with potential participants as we were introduced by a familiar and trusting source: the ECE. The ECE also provided a formal introduction to the class in circle time. This was important for gaining entry with the children who were then asked individually if we could videotape their play. While videotaping the children playing, we maintained an outsider status to diminish the effect of our presence on their natural play. This approach to data collection particularly helped the children "forget" about the camera and become more comfortable with our presence which, in turn, eased the consent process with them as time passed. These introductions by the ECE helped to create the balanced insider and outsider status, as we were able to maintain the professional role of researcher while still presenting a friendly and familiar manner. [32]
In completing this research we came to feel that the delicate equilibrium between insider and outsider status was most susceptible during the participant interviews. To help alleviate this problem, special attention was paid to details of the interview process to ensure a balance was maintained. For example, the interviews were conducted in a setting that was safe and familiar for the participants, such as their preschool, their home or their place of work. Conducting the interview in their realm of experience gave the participants some authority in the situation and helped them to be confident in their expertise. Conversely, conducting the interviews at the university, a place they may never have visited, may have threatened parents' confidence and openness. Additionally, to encourage comfort and establish a warm and welcoming setting, we chatted lightly, before the commencing the interview and provided juice and cookies to project an atmosphere of "visiting over coffee." For example, one caregiver entered the interview with obvious anxiety and seemed uncertain of her expertise, "I don't know if I can think of any examples." However, after taking a cookie and beginning the interview, with the reassurance of the interviewer's smiles and nods, this caregiver elaborated with quite personal illustrations. An interview that could take as little as 30 minutes easily lasted 70 minutes with this caregiver. We found that after our first few interviews in each preschool, word had quickly spread to other parents and became a powerful force in easing fears. Parents were less anxious about being the subject of a research interview as they heard positive feedback from other parents, and learned what to expect in our research approach. [33]
Having established a comfortable setting for the parents in order to decrease outsider status, the researcher may find that the reverse problem can quickly occur. The parent may feel so comfortable that they disclose more than they had intended to share and the researcher may be getting more information than they bargained for as a result of this trusting relationship (ANDERSON & ARSENAULT, 2000). Also, in these circumstances the researcher may be asked for advice in solving personal and familial matters. This is an opportune moment to re-establish the role of the researcher to the parent and increase outsider status. We experienced one such episode after a parent had completed the interview and the tape recorder had been stopped, and this parent subsequently began disclosing personal matters not related to the research topic. In order to maintain an outsider status and to respect the contributions of the participant, the interviewer gently reminded the parent of the researcher's role by stating, "I'm sorry, we cannot give advice on parenting. We are most interested in hearing about your thoughts and experiences, and we thank you for your time in answering our questions." [34]
Our warmth and transparency during informal interactions with parents and ECEs served as a valuable avenue for maintaining the integrity of our balanced insider-outsider status. Often ECEs and parents would approach us casually in various situations, such as on the playground or in the class while taping, and ask questions such as "Do the children seem to mind the camera?," "Can I see what you are taping?," "Have you taped my child yet?" These conversations allowed us to keep the process confidential but not shrouded with secrecy. Answering their questions would often lead us into casual conversations, which helped us to reduce our outsider status and fostered warm and respectful relationships with preschool community members. Likewise, we would frequently communicate with the ECE keeping her up to date with our progress. These updates were a respectful acknowledgment that we were guests in her space. Additionally, within the preschool environment we were careful in our choice of dress, knowing that clothing can make an influential nonverbal statement about our relative status. In these preschool settings, the ECEs dressed in very causal clothes so that they could get into the "messy business" of preschoolers. Therefore, to recognize and be sensitive to the experiences of the community members, we needed to dress smartly and sensibly in these settings being careful not to alienate the participants with business attire. [35]
5. Recommendations for Supporting Ethical Practices with Large Qualitative Studies
Qualitative research is, by nature, personal. Trying to be personal when you are interacting with 317 individuals appears to be a contradiction, and yet we made it work because we recognized that objective ideals in research ethics (ROTH, 2004) can be put into practice one individual at a time. From the outset, we recognized that our participants were knowledgeable about the social phenomena of self-regulation in their lives, and in our estimation, this placed them in a position of honor. We also realized, in a very humble way, that parents and educators were free to say "no" to us, but at every opportunity were saying "yes." We were grateful. ROTH (2004) candidly describes the awkwardness of asking for and receiving gifts of participant time and knowledge. Yes, this made the personal process of qualitative research a messy business. However, our gratitude for their "gifts" of time equalized the power between researchers and participants and encouraged participants to share their questions, ideas and concerns. The participants know, because we tell them, that they are valued. Our gratitude for the community's involvement led to open communication and, in turn, made a great impact on interpersonal relations with the real people, whose real lives we were studying. We were less likely to objectify or delete the contributions of people in our study, as ROTH (2004) cautions, because we took the time to recognize and be empathetic to their needs through our field notes, journals and weekly research team discussions. A human lens of "dead car batteries," "soccer games" and "oh, I forgot the meeting was tonight" transmuted the study from the achievement of "our will" and desires as researchers toward "our goodwill" and compassion to our participants. Valuing participant contributions eliminates the assumption that they will participate because our work is so very valuable. This "no strings attached" stance is the hard part of personalizing large-scale qualitative studies. Yet, this clarity of perspective, and personalized gratitude, continues to contribute to the success of our work. It isn't easy, but it is worth it. [36]
SHAW suggests ethical awareness should not be focused on initial approval and initial consent, but that truly ethical research requires the "ongoing reflection on and responses to ethical issues throughout research projects" (2003, p.25). Taking time to personally contact participants to clarify the study's goals and being available to answer questions throughout the research timeline, we ensured authentically gained and maintained consent. In addition, there is the added benefit of preventing and addressing problems early. We would like to suggest that prediction is an important part of the "ongoing reflection" to which SHAW (2003) refers, as it improved the quality of our interactions. The researchers' thoughtfulness involves trying to predict and meet participants' needs, but does not mean that we can avoid unhappy participants, or that we will get it right all of the time. Sometimes a participant's withdrawal from a study is the best solution for the comfort of all involved. As the TriCouncil stresses, the researcher-participant relationship must be nurtured through constant "thought, insight and sensitivity to context" (PRE, 2003, p.i.9). However, empathically predicting participants' needs, concerns, family and work pressures, and recognizing what actions on our part might support parent and educator involvement is really only the first step. The next step is making plans to meet these needs and then keeping the promise. Planning and keeping promises to our participants is a proactive, solution-based process that moves away from the adversarial, perpetual thinking about "What is going on now? It's only a matter of time before that participant withdraws," toward a much more reflective process. [37]
Despite the inclusion of personalized and empathic problem-solving strategies there is a point of division between the researcher and the community members. The literature documents this division as a tension between the insider and outsider roles, and portrays the challenges of negotiating access into a tightly knit community as discussed by SIXSMITH et al. (2003). We would suggest that this tension does not have to exist or be perpetuated. Attitude is truly "a little thing that makes a big difference." We recognized, actively acknowledged and respected the fact that we were outsiders without the presumption that we should only be seen as insiders because our work was so important and we were so very nice. We embraced both the insider and outsider roles as part of our natural approach, and we made no assumptions. We realized that trust needed to be earned through credible consistent acts of professionalism and ethical behavior. That is, if people did not want to be in the study they were not in the study and all data was destroyed, if people wanted to stop the tape we stopped it, if children did not want to be videotaped we moved, if people did not understand we explained, every educator received thank you cards and flowers, all preschools received three books as a donation, and all preschools received the final report. We kept our professional and ethical promises. By word of mouth, our friendliness, enthusiasm, gratitude and respect was shared from preschool to preschool and family to family. This buzz of support allowed us to become insiders and trusted members of the preschool community, for a while. As insiders we had the responsibility of maintaining warmth, trustworthiness and transparency by valuing participant concerns and contributions. We did this through nods and smiles and lots of "thank you's." In addition, at the end of each focus group, we shared with participants how their contributions would assist in the development of a self-regulation assessment tool to be used by educators and parents. In this way, participants realized that their contributions were important and could provide a benefit to their community, and that long after the research was done, we would value their voices. In fact, as a result of weaving together interpersonal kindheartedness with professional and ethical approaches, we found that our procedure within the preschool community was not a cumbersome undertaking but a humane, respectful and more interesting way to approach a research study. We learned that we do better, produce more, and live more enriched lives as researchers by being compassionate to our participants and each other. [38]
Acknowledgments
Dr. Wanda BOYER gratefully acknowledges the generosity of funding agencies including the Human Early Learning Partnership (HELP) and the Social Sciences and Human Research Council (SSHRC). The Self-Regulation Team would like to thank all of the parents, children and educators who graciously gave us the gift of their time, knowledge and support. Thank you.
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Lisa BLODGETT is currently completing a Masters' Degree in Educational Psychology at the University of Victoria. As a school teacher and counselor, her research interests focus on children's social and emotional development. She is currently examining young children's behavioral self-regulation, with a specific focus on preschool aged boys' regulatory responses.
Contact:
Lisa Blodgett
University of Victoria
Department of Educational Psychology and Leadership Studies
P.O. Box 3010 STN CSC, Victoria, British Columbia, Canada, V8W-3N4
E-mail: lisajb@uvic.ca
Wanda BOYER is an associate professor of Educational Psychology at the University of Victoria. Her research interests are in the study of self-regulation, in general, with special emphasis on ecological support for self-regulation in preschool and elementary aged children. In addition to studies of pre-service teacher empathy and optimism, her current research examines the acquisition of self-regulatory skills in children ages 3-5.
Contact:
Wanda Boyer
University of Victoria
Department of Educational Psychology and Leadership Studies
P.O. Box 3010 STN CSC, Victoria, British Columbia, Canada, V8W-3N4
E-mail: wboyer@uvic.ca
URL: http://www.educ.uvic.ca/epls/faculty/boyer/boyer.htm
Emily TURK is currently completing a Masters' Degree in Educational Psychology at the University of Victoria. Having five years of previous experience as a preschool educator, she is currently researching parental perceptions of their role in supporting self-regulation with children having difficulty following social rules.
Contact:
Emily Turk
University of Victoria
Department of Educational Psychology and Leadership Studies
P.O. Box 3010 STN CSC, Victoria, British Columbia, Canada, V8W-3N4
Email: esturk@uvic.ca
Blodgett, Lisa J., Boyer, Wanda & Turk, Emily (2005). "No thank you, not today": Supporting Ethical and Professional Relationships in Large Qualitative Studies [38 paragraphs]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 6(3), Art 35, http://nbn-resolving.de/urn:nbn:de:0114-fqs0503353.