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Journal of Neuroscience Nursing:
doi: 10.1097/JNN.0b013e3181aaaa89
Article

Caregivers' Experience: Bimonthly Participation in a Year-Long Research Interview Process

Pierce, Linda L.; Steiner, Victoria; Pitzen, Heidi; Grothaus, Elizabeth

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Author Information

Victoria Steiner, PhD, is an assistant professor, University of Toledo College of Medicine, Toledo, OH.

Heidi Pitzen, BBA MSN RN, is a staff nurse, University of Toledo Medical Center, Toledo, OH.

Elizabeth Grothaus, MSN RN CNS, is an instructor, University of Toledo College of Nursing, Toledo, OH.

Questions or comments about this article may be directed to Linda L. Pierce, PhD RN CNS CRRN FAHA, at l.pierce@utoledo.edu. She is a professor at the University of Toledo College of Nursing, Toledo, OH.

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Abstract

New caregivers of stroke survivors participated in a bimonthly research interview process for a year-long intervention study. The purpose of this current project was to describe the telephone interview experience for those in the study's control group. We purposively selected 14 participants to answer a telephone survey. The following themes emerged: (a) looking forward to talking with someone, (b) feeling helped and staying connected, (c) being busy caregiving and taking care of business, (d) helping others, and (e) being ambivalent or negative about the interview process. Orem's self-care deficit nursing theory was then applied to reflect upon these themes. It is important for nurse researchers to remember that interviews used for data collection are not neutral or noninteractive.

Interviews are frequently used as a method for collecting research data (Lowes & Prowse, 2001; Speziale & Carpenter, 2007). "The purpose of the interview is to understand the worldview of the interviewee" on the topic of interest (Hiller & DiLuzio, 2004, p. 6). The interview process provides an opportunity for participants to not only discuss their thoughts but also to reflect (Hiller & DiLuzio, 2004). However, research interviews can have effects on the participants that have more to do with the interview process than the topics discussed because data are gathered during interviews (Shamai, 2003). In other words, "hearing the voice of the participant is not the same as understanding how the interviewee perceives the research process" (Fontana & Frey, 2000, p. 4). It has been suggested that therapeutic effects can emerge from participation in research interviews (Colbourne & Sque, 2005; Gale, 1992; Hutchinson, Wilson, & Wilson, 1994; Shamai, 2003). In this regard, the research interview begins to resemble the therapeutic interview, with similar effects on the participants, such as greater self-awareness or venting of repressed emotions (Colbourne & Sque, 2005).

There is limited knowledge, however, as to the potential therapeutic benefits of the research interview for the interviewee. Indeed, discussions of the benefits of the research interview have generally been "limited to the potential for generating knowledge" (Hutchinson et al., 1994, p. 164). The research interview is usually discussed from the perspective of the researcher and the objectives of the research study rather than the perspective of the person being interviewed (Gibson, 1998; Hiller & DiLuzio, 2004). The purpose of this project was to describe the experience of caregivers of stroke survivors who participated in a telephone interview process during a year-long intervention study.

Research about caregivers is crucial because people are increasingly finding themselves in this role. Eighty percent of persons who survive a stroke return to their community and rely on family caregivers for assistance (Anderson, Linto, & Stewart-Wynne, 1995; Grant, Elliot, Weaver, Bartolucci, & Giger, 2002). Caregivers can be thrust into the caregiving role abruptly (Kerr & Smith, 2001), and caregivers may experience high levels of burden (Scholte op Reimer, de Haan, Rjinders, Limburg, & van den Bos, 1998). For these reasons, the experiences of caregivers participating in interviews for research are significant to healthcare professionals and researchers who work with caregivers and stroke survivors.

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Year-Long Intervention Study

Web-based assistance called Caring∼Web, an education and support intervention (Steiner & Pierce, 2002) and now available at http://caringweb.utoledo.edu/, was provided to new caregivers during the first year of caring for stroke survivors in the home in this study. Differences in outcomes between caregivers randomized to the Web intervention group (n = 51) and those in a control group (n = 52) that pertained to their experience of caring (caregivers' well-being and stroke survivors' healthcare service use) were examined using a mixed-model design (Pierce, Steiner, Khuder, Govoni, & Horn, 2009). In addition, this study explored caregivers' perceived problems and successes with caring (Pierce, Steiner, Govoni, Thompson, & Friedemann, 2007).

Seventy-three participants (n = 36 in the intervention group and n = 37 in the control group) completed this study during which they received bimonthly telephone interviews over the course of 1 year. Structured quantitative surveys using standard tools were read verbatim to the participants to gather information on the caregivers' well-being (depression and life satisfaction) at baseline and every 3 months. The participants were also queried about the stroke survivors' use of healthcare services every 2 weeks. In addition, qualitative open-ended questions pertaining to caregivers' problems and successes in caring were asked by the interviewers every 2 weeks, and they used probes to obtain as much information as possible about the caregivers' experiences. Most interviews took 20 to 30 minutes to complete.

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Methods

Only the control group participants, who completed this year-long study and who met the inclusion criteria for this project of never having spoken with this particular project interviewer, were selected as potential participants with university institutional review board approval. This interviewer worked on the research team for the year-long study, and purposeful selection was important to prevent any bias between the interviewer and participants who had extensive contact during the year-long study. In addition, control group participants were only chosen so that the Web-based intervention would not influence the participants. Of the 37 participants in the control group, 21 participants met these criteria, and they were telephoned to ask if they would be willing to answer a one-time survey about the experience of participating in the year-long study's interview process. If the participant verbally consented to participate, it was recorded on the survey form, and a date and time to conduct the survey was arranged. However, if the participant was prepared to continue at the time of this telephone call, the survey was administered. The survey took about 10 to 20 minutes to complete.

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Data Collection Materials

Predetermined open-ended questions were developed by the four researchers/authors and used with the participants during the one-time telephone survey. Open-ended questions were appropriate because they require more than a simple yes-or-no answer (Egan, 2002). The goal of this approach was to gather detailed data rather than simple yes-or-no answers. The survey tool consisted of four primary questions, beginning with "Can you describe what it was like being interviewed by telephone every two weeks for the year-long research study? Please tell me about that." Second, the participant was asked, "Can you tell me what it was like for you on a day when you received a call from your interviewer? What were you thinking or feeling?" If the participant was not forthcoming, the interviewer added, "Just before the call?/Just after the call?" Third, the participant was asked, "Can you tell me what it was like for you on a day when you did not receive a call from your interviewer? What were you thinking or feeling?" Finally, "Is there anything more that you would like to tell me about your research interview experience that we have not talked about?" The interviewer also had a list of seven probes from which to choose to interject and encourage the participant to continue the conversation, such as, "Please tell me more about…" and "Can you give me some examples?" In addition, the interviewer had the discretion to use prompts like "I see," "Sure," and other verbal affirmations. The goal of prompts and probes was to keep the story going without influencing the subject matter (Norwood, 2000).

Content validity of the survey was established by having it reviewed by registered nurses who held master's degrees and worked on the year-long study. In addition, the project interviewer who was a licensed social worker had the opportunity to contribute input to the survey tool. After this review, the tool was made clearer by adding an introduction that explained why the participants were asked to participate in the survey.

The anonymity and confidentiality of the participants were respected and protected, and participation in this survey was voluntary. The participants were free to refuse or end the discussion at any time. An identification number was assigned to the participants' survey responses to keep their identities anonymous.

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Data Analysis

These data were then analyzed using Norwood's (2000) eclectic approach to qualitative analysis that consists of three phases: deductive, inductive, and integrative. The deductive phase entailed converting the data from narrative form to more manageable units. The researchers read all transcripts of the telephone survey data in their entirety to establish a baseline impression of the whole dialog. By repeatedly reading the data, the significant statements were clustered into themes.

Then, the inductive and integration phases of analysis began (Norwood, 2000). In the inductive phase, we individually labeled themes that emerged. These themes were then discussed as a group until consensus was reached, which helped establish credibility of the findings. In the integration phase, relationships between themes and variations within themes were identified and woven together. An audit trail was constructed to provide transparency such that other individuals could reasonably expect a similar result, if they followed the same process of data collection and analysis. Having the researchers involved in content clarification, refinement, and consensus strengthened the data interpretation and further enhanced the trustworthiness of the findings.

The analysis of the transcribed interview data was completed using only the information that was communicated by the participants without allowing the researchers' preconceived ideas to bias the information. In fact, both the interviewer who conducted the survey and the researchers who analyzed the data used bracketing prior to data collection to identify self-assumptions and set them aside to isolate pure phenomena that were free from preconceived notions. The aim of bracketing was to examine prejudices and commitments on the part of the interviewer and researchers and suspend all judgments or ideas about interview processes or "bracket" them out so that the experience of the caregivers could be seen as it is and not as reflected through others' preconceptions (Cohen, 1987; Munhall & Boyd, 2001). The following beliefs were bracketed: being interviewed about the caregiving experience is therapeutic and beneficial; caregiving is valuable and appreciated by the individual being cared for and by society in general; caregiving is difficult, has economic value, and requires commitment; and people participating in research genuinely desire to participate with honesty and openness.

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Results

Participants

Of the 21 potential participants who met the inclusion criteria, 14 of them agreed to answer the survey. For the 7 participants who did not participate, telephones of 2 were disconnected and they could not be contacted. The remaining 5 participants were called three times, but they were never available to talk with the interviewer and/or they did not return her messages. The participants included 3 men (aged 58-72 years) and 11 women (aged 33-74 years) who were caregivers of stroke survivors. All 3 men were of White, non-Hispanic origin and cared for their wives. Only 1 man had completed high school. One man worked full-time, whereas the other men were retired. The 8 women were ethnically more diverse, 6 were of White, non-Hispanic origin, 1 was Black, and 1 was a Native American. They were providing care for a husband, parent, or sister. Four of the women had completed high school or beyond and worked full-time. A demographic profile of these participants is displayed in Table 1.

Table 1
Table 1
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Themes

Five themes emerged from these data that were related to the experience of caregivers of stroke survivors participating in a year-long telephone interview process. Themes were (a) looking forward to talking with someone, (b) feeling helped and connected, (c) being busy caregiving and taking care of business, (d) helping others, and (e) being ambivalent or negative about the interview process. Fictional names are used to protect participants' privacy.

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Theme 1: Looking Forward to Talking With Someone

Participants expressed how they welcomed having someone listen to them and that they looked forward to the telephone calls. Glen stated, "When I was having a bad day [in caring for my wife], I looked forward to the call. When I was at my breaking point, it was something for me to look forward to." Other spousal caregivers agreed. Corrine said, "I looked forward to talking to her [interviewer] when she called." Linda noted, "I looked forward to talking to somebody. Sometimes I wished she [interviewer] would call because it was nice having someone to talk to." Helen, who was caring for her husband, explained what the interviews provided her. She said, "It gave me a sounding board. I didn't have a lot of people to talk to. It is tough to be alone taking care of someone." The interviewer also became someone who Corrine felt that she could talk to without burdening friends or family. Corrine stated, "I appreciated someone who wasn't close to us to talk to. You really don't want to complain to people you know. She let me talk, and I didn't have to feel bad for it."

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Theme 2: Feeling Helped and Staying Connected

The participants in this study knew that they were in the control group, and some felt disappointed about not being placed in the Web-based intervention group that received the education and support from healthcare professionals. However, after the year-long study had ended, they believed that they had derived some benefit from their participation after all. Alice, a spousal caregiver, said, "I was skeptical, but it [interview] helped me get through some tough times. I felt down [on days] I didn't get calls because they really helped."

Ellie explained that the interviews were helpful in caring for her husband because they gave her a chance to reflect on her experience. The interviews helped her build an awareness of what she was doing and why she was doing it. She shared, "It really made me think about what was going on. I think it made me more aware of how my husband was doing and what I was really doing. I think that it was good for me to do it. It was helpful for me."

Talking with the interviewer made both Linda and Alice simply feel better. Linda said, "A lot of times I felt better. If I was feeling depressed or frustrated, she [interviewer] would talk with me about why and I would feel better." Alice characterized this benefit as a feeling of relief. She said, "I felt much better. I felt relief after the call." Linda went on to characterize the main benefit she felt from participating in the interviews as reassurance. "I definitely felt more confident and reassured after talking to her." Noralynn, a daughter caring for her mother, also mentioned reassurance as a benefit of the interviews, going so far as to call the interaction of the interview "therapeutic."

Helen stressed how the interviewers made her feel less alone. She noted, "The interviewer helped me understand that I was not alone and there are lots of other people out there who were in the same situation." This feeling of connection was something that several caregivers mentioned. Alice said, "I liked the phone interview because I felt like it kept me connected to someone and kept me abreast of what was going on. I didn't feel like I was alone." Melanie said that she felt better because of the sense of connection with those sharing the same experience.

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Theme 3: Being Busy Caregiving and Taking Care of Business

A number of caregivers focused on their caregiving experience as demanding and hectic, leaving little time to contemplate any effects that the telephone interviews may or may not have had. Noralynn, who worked full-time, recalled, "To be honest, she'd [interviewer] call, and I'd say 'Has it really been 2 weeks already?' I was so busy that I wouldn't have known if it was 1 week or 3 months in between phone calls." Barbara, who was caring for her husband, explained, "Sometimes I forgot about you [interviewer] calling, I just waited until you called and answered your questions the best I could. I was too busy taking care of [my husband] to worry about it." Glen, a retired factory worker and farmer, put it plainly: "I was too occupied with taking care of my wife to give any thought to what day it was or if someone would be calling."

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Theme 4: Helping Others

Other caregivers expressed that one motivation for their participation was a concern for others. Representative of their comments are the following exemplars. Glen shared, "It was okay. I took the time to do it. I was busy, but I wanted to help…." Jack also felt that he had been able to make a contribution through his participation in the interviews. He said, "I think I added to the study, and it was productive. I like being able to help. Maybe somebody can learn something from the things I dealt with."

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Theme 5: Being Ambivalent or Negative About the Interview Process

Some of the caregivers expressed ambivalence about their participation in the interview process. Fran, a daughter who cared for her mother, said, "It was nice when she [interviewer] called, but it really didn't do anything for me." Jack recalled, "I don't think it made me feel any better or worse about what was going on [with my wife]." Not all the caregivers who participated in the interview process found it beneficial. Barbara stated, "It was different, but not enlightening. Nothing monumental was said." Irvin also felt that he did not get anything out of the calls. He said, "I was frustrated over the condition of my wife. I didn't look forward to the calls, and I wouldn't have cared if nobody called."

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Discussion

Orem's (2001) self-care deficit nursing theory was used to reflect upon the themes. Orem's theory focuses on an individual's ability to perform self-care or the practice of activities that are initiated and implemented in maintaining life, health, and well-being where individuals can take responsibility for their health and the health of others. In a general sense, individuals have the capacity to care for themselves (self-care agents and agency) or their dependents (dependent-care agents and agencies). Orem's theory provides a means for discussion of caregivers' experiences in terms of their own self-care agencies (capacity and ability to care for self) and their dependent-care agencies (capacity and ability to provide care for another; Orem, 2001).

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Theme 1: Looking Forward to Talking With Someone

The caregivers in the project were asked to comment on their own experiences. Their responses came out of a reflection upon their personal situations and not necessarily the conditions of their loved ones. Looking forward to talking with someone came from a desire to meet their self-care agency needs related to finding a balance between solitude and social interaction (Orem, 2001). One of the participants illustrated this plainly when she said that she sometimes needed to talk and "she [interviewer] listened, and that was what I needed…."

Although the participants in this year-long study were not receiving the telephone call as a clinical intervention, another study that did intervene using telephone calls with caregivers found that caregivers for cancer patients were enthusiastic and looked forward to the calls (Walsh, Estrada, & Hogan, 2004). "This reliance on another person to take the initiative, to offer nonconditional support, to call at the scheduled time with no changes, and to keep the caregiver welfare as the primary focus appeared to be the major advantage felt by caregivers during a time when there was little stability in their lives. Many caregivers said that they began to care for their own health as a result" (p. 186).

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Theme 2: Feeling Helped and Staying Connected

The participants met their self-care agency (Orem, 2001) by balancing solitude and social interaction (i.e., aloneness and togetherness), but this theme goes a bit further to explain why a caregiver wanted to be connected. This sense of connection helped them to meet the challenges of the caregiving role. The caregivers said that they felt relief, reassurance, confidence, therapeutic support, a sense of friendship, and knowledge that their condition is one that is shared by many people.

A study by Kerr and Smith (2001) reported that caregivers said "discussing issues and problems and receiving advice from someone viewed as an expert on stroke made a significant difference" (p. 434). In Secrest's (2000) study, caregivers saw the interview process of sharing experiences as therapeutic in and of itself. "Both the researcher and the therapist are taught to listen, demonstrate empathy and respect, seek clarification, and confront the other with new thoughts" (Hiller & DiLuzio, 2004, p. 4). The interview process for research has the potential to resemble a therapeutic interview because of these shared characteristics. Indeed, the participants' responses in this project indicated that they, too, felt a therapeutic benefit during their participation.

What comes to mind then is, how were the caregivers receiving "help" that was not explicitly given? The research telephone interviews were not intended to be therapeutic; they were for data collection purposes only. The interviewers were instructed not to offer suggestions or information, and the control group did not receive the Web-based intervention of education and support. Yet, caregivers clearly indicated feelings of having been helped. It has been suggested that therapeutic effects can emerge from participation in interviews (Colbourne & Sque, 2005; Gale, 1992; Hutchinson et al., 1994; Shamai, 2003). An interviewer helps an interviewee translate his or her experiences into words (Egan, 2002; Hutchinson et al., 1994). In this regard, the research interview begins to resemble the therapeutic interview, with similar effects on the participants, such as greater self-awareness or venting of repressed emotions (Colbourne & Sque, 2005). Shamai (2003) suggested that therapeutic effects come from three areas: the content of the interview, the context in which the interview takes place, and the interviewer-interviewee relationship. For example, a participant in this project indicated that she had experienced positive interactions in the interviewer-interviewee year-long relationship because she was able to discuss her experiences as a caregiver new to that role. She said, "We sort of became friends, even though I knew I would never meet her."

A study by Boter, Rinkel, and de Haan (2004) developed a nurse outreach care program with 173 stroke patients and their 148 caregivers that consisted of three telephone calls over the course of 6 months and one home visit. The nurses either implemented interventions themselves or referred patients to another resource. It was found that of 874 interventions the nurses used with the patients, the most frequent intervention the nurses chose was "supportive listening," which was used over half the time. The nurses also used supportive listening with caregivers approximately 50% of the time. This seems to indicate that the act of listening is a potent and frequently used intervention by nurses.

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Theme 3: Being Busy Caregiving and Taking Care of Business

A number of caregivers in this project focused on how hectic and demanding caregiving is. Consequently, they did not give much thought to the interview process because they were too overwhelmed by the responsibilities of caregiving or, as Orem (2001) described, being a dependent-care agent. One participant said, "I was usually too busy, so I didn't think about [the interview]. I had to get my husband to bed after we hung up." Some felt more confident than others did with the development of their caregiving skills or, in Orem's terms, their dependent-care agencies. For example, a male participant shared, "I was busy, but I kind of knew what I was doing. I took care of my wife's dad…before her stroke, so it wasn't anything new."

Caregivers often experience high levels of burden (Scholte op Reimer et al., 1998). The nature of caregiving is such that it is easy to burn out. Secrest's (2000) implications for nursing were replete with suggestions for how nursing's knowledge of the experience of caregiving can help caregivers because dependent-care agents (Orem, 2001) develop a stronger dependent-care agency. For example, nurses can help caregivers navigate through the caregiver role and find potential joy in day-to-day accomplishments through listening and discussion.

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Theme 4: Helping Others

For some participants, being a participant in the year-long study was a way to provide assistance for others that impacted their self-care agency (Orem, 2001). Helping others often is an outgrowth of a belief in altruism, which, according to Merriam-Webster (2008), is the belief that acting for the benefit of others is right and good. Caregivers felt like they could give back to their communities through their participation in the scientific study of their experiences. As one male participant said, "I like being able to help. Maybe somebody can learn something from the things I dealt with." Munhall (1988) wrote that for a participant, being part of research can afford "individuals the opportunities of contributing to society, of being of service and perhaps advancing a cause of their own" (p. 155).

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Theme 5: Being Ambivalent or Negative About the Interview Process

The caregivers' responses indicated that they had individual needs (Orem, 2001) that the research interview process did not meet for them. A participant said, "It was okay to talk to somebody…but I don't think it made me feel any better or worse about what was going on." For some, the interviews may have been more a burden than a help. For example, one participant shared, "I didn't look forward to the calls and wouldn't have care if nobody called."

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Study Strengths and Limitations

A strength of the present project was that the men and women who participated were interviewed for 1 year, ranged in age from mid-30s to 70s, and were new to the caregiving role, allowing a description of the interview process from a broad perspective. The project's results indicate the need for nurses in all practice settings such as hospitals, clinics, and homecare to be there for caregivers by carefully listening and assessing and identifying their needs and offering creative interventions. Outside support is not always welcome; caregivers often refuse help and resources because they may feel that professionals are prying into their private lives. Effective intervention by nurses involves the ability to suggest the kind of help that is in tune with caregivers' needs.

However, the results of this project may have limited transferability because most of these caregivers were White Americans and all resided in two Midwestern states. The sample size was also small. Thus, we do not know if true data saturation was reached or if the sample size was adequate to capture the nature of the experiences so that the results are transferable. Readers need to make a decision as to whether these results pertain to their population of participants and in their setting.

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Conclusion

Implications for future research include using larger and more ethnically and geographically diverse groups of caregivers to examine their perceived experiences during participation in the research interview process. Future study could also center on ways to compare the responses between men and women who participate in research. Research to explore whether men derive a sense of self-esteem through their participation in research interviews could be undertaken.

This project provides information about research telephone interviews. In general, the implication for nurse researchers is to recognize that research interviews for data collection are not neutral or noninteractive. There is a potential for interviewees to derive therapeutic benefits from their study participation (Colbourne & Sque, 2005; Gale, 1992; Hiller & DiLuzio, 2004; Hutchinson et al., 1994; Shamai, 2003). Remember one participant's words, "When I was at my breaking point, it was something [talking with the interviewer] for me to look forward to." For example, nurses and other professionals who simply take time to listen to and communicate with caregivers may help reduce burnout and improve the caregiver experience. A small action such as giving a caregiver time to reflect on his or her experience through answering questions can provide him or her with a sense of being heard.

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Acknowledgments

The year-long study was supported through a National Institute of Nursing Research, National Institutes of Health Grant #RO1 NR007650. The authors thank the research team members and all caregivers for their participation in that study. The caregivers who participated in this project are acknowledged for volunteering their time and information for this work. We also thank the interviewer for her assistance with this project.

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© 2009 American Association of Neuroscience Nurses

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