Unstructured interviews: challenges when participants have a major depressive illness

METHODOLOGICAL ISSUES IN NURSING RESEARCH Unstructured interviews: challenges when participants have a major depressive illness Wendy Moyle BN MHSc PhD RN Senior Lecturer, Centre for Practice Innovation in Nursing and Midwifery, School of Nursing, Griffith University, Nathan, Queensland, Australia Submitted for publication 27 September 2001 Accepted for publication 30 April 2002 Correspondence: Wendy Moyle, School of Nursing, Griffith University, Kessels Road, Nathan, QLD 4111, Australia. E-mail: w.moyle@mailbox.gu.edu.au Journal of Advanced Nursing 39(3), 266–273 Unstructured interviews: challenges when participants have a major depressive illness Background. There is debate about undertaking sensitive research with vulnerable populations. Primarily, the literature has focused on informed consent, confidentiality and the principle of beneficence, with little discussion about data collection methods. Aim. This paper discusses the challenges of conducting unstructured interviews when participants have a major depressive illness. Issues arose during a phenomenological study that explored the meaning of being nurtured with seven people who were hospitalized for depression. Findings. The depressive illness and treatment were found to impact on participants’ articulation and recalling of their experience, and raised ethical concerns about their informed consent. Personal engagement with participants raised the ethical issue of research vs. therapy. Furthermore, participants being in a hospital complicated the necessity for privacy. The methodological issue of bracketing of assumptions was deemed to be important to ÔseeÕ the phenomenological relevance of patients’ experiences. Conclusion. Knowledge and experience are required when conducting unstructured interviews. Debates about the challenges of unstructured interviewing needs to be highlighted in research texts to assist novice researchers. Support from an experienced research mentor would assist novice interviewers through the interview process and provide post-interview debriefing. MOYLE, W. (2002) Keywords: sensitive research, unstructured interviews, qualitative research, depression, mental illness, mentor, novice Introduction Sensitive research Debate is raised in the literature about undertaking research with vulnerable populations such as abused or mentally ill people and children. Although knowledge gained from such investigations might be useful, it is apparent that doing research with people who are frightened, ill or incompetent to give informed consent raises issues about the ethics that support and constrain such studies. Much of the debate 266 centres on whether informed and voluntary consent can be assured where there are differences in language, culture, education and social norms (Shreffler 1999, Haggerty & Hawkins 2000, Strauss et al. 2001). Furthermore, there is debate about ethics committees hindering sensitive investigations, such as lesbian and gay health research (de Gruchy & Lewin 2001). Methodological issues are also discussed in terms of the difficulties of accessing health care settings for the purpose of conducting qualitative research (Herdman 2000). Primarily, the literature has focused on informed consent, confidentiality and the principle of beneficence, with
2002 Blackwell Science Ltd Unstructured interviews Methodological issues in nursing research little discussion of the need for consideration of data collection methods. This paper adds to the debate about sensitive research through a discussion of the challenges encountered when using unstructured interviews to collect data from a vulnerable group of people hospitalized with major depression. The study in question involved unstructured interviews with people with a major depressive illness who, except for one participant, had been undergoing electroconvulsive therapy (ECT). The paper examines challenges when conducting unstructured interviews from three broad perspectives: the implications of major depressive illness per se, including treatment; the process of interviewing, such as the importance of privacy; and the methodological issue of bracketing. Unstructured interviews Unstructured interviews engage the interviewer and participant in conversation about a topic in response to the interviewer asking open-ended questions (Streubert & Carpenter 1999). For example, the interviewer might ask participants to address a broad question such as: ÔTell me about your experience of childbirthÕ. There is no set response to such a question and this provides opportunities for participants to explain their experience of the phenomena under study. The interviewer refrains from using a definitive framework that leads the questions asked, and instead follows the direction of the participant’s story-telling in response to the opening question. This helps to ensure that the narrative is from the participant’s perspective and not influenced by the interviewer. Unstructured interviews are usually audiotaped to assist in verbatim transcription of interview data. Qualitative research texts and interviews Qualitative research texts outline the different types of interviews (structured, focused or semi-structured, unstructured and group interviews), as well as issues such as confidentiality when recording interviews, note-taking and asking probing questions. Some texts also discuss the importance of the theoretical framework that underpins an understanding of interviews and the construction of questions. Minichiello et al. (1997) argue, however, that the majority of research textbooks pay little attention to the actual interview process and they have produced a guide for qualitative researchers to assist the conduct of unstructured or what they term Ôin-depthÕ interviews. Texts such as that of Minichellio et al. (1997) suggest that the process of interviewing comes more naturally to some individuals than to others and that to become a skilful interviewer takes knowledge and experience. However, limited recognition is given to participants’ health, age or cognitive ability and subsequent possible impediments to the process of unstructured interviewing. Impediments to the unstructured interview Ageing and physical disability Several researchers have reported the difficulties of using unstructured interviews to collect data from older people in institutions (e.g. West et al. 1991, Bray et al. 1995). Challenges arising from physical disabilities include a lack of rapport due to poor vision and hearing, frustration related to speech impediments, fatigue, pain, and discomfort due to urinary and faecal incontinence. Cognitive problems such as poor memory and disorientation further challenge interviewers. Difficulty with expression, participants’ unclear body language and their eagerness to be socially accepted extend these challenges. Further problems arise when trying to interview people who are compromised, for example, those who are mechanically ventilated (Hill et al. 1999). Mental illness People with a mental illness are presumed to be a vulnerable population and thus may be regarded by some as unsuitable research participants (Usher & Holmes 1997). The use of unstructured interviews with people diagnosed with a mental illness poses additional challenges not only for researchers but also for participants. Acknowledgement of such issues and relevant strategies to assist the process are not readily apparent in the research literature. Some authors have focused on the rights of mentally ill people and suggested that interviews may be either therapeutic or distressing for participants (Munhall 1991, Reinharz 1992), rather than recognizing their right to have a voice. The opportunity for people with mental illness to tell their story is important and the research on which this paper is based aimed to give people with a depressive illness this opportunity. Exploring the challenges of unstructured interviews and mental illness Being nurtured while depressed A phenomenological research approach was used to develop an understanding about care-giving as nurturing from the perspective of the person being nurtured while depressed. Phenomenological inquiry aims to describe phenomena or the appearance of things as consciously experienced by participants, without the researcher considering theories or assump-
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(3), 266–273 267 W. Moyle tions as a causal explanation for the experience (Spiegelberg 1975). The lived experience is the central focus of phenomenological research. An interest in nurturing was considered to be a much broader and more universal concept to study than care-giving because, although nurturing has been acknowledged as a construct of care, it has not been established specifically as being unique to nursing nor firmly attached to the term nursing. Thus, it was assumed that participants would be able to discuss this concept without feeling that their focus should only be on Ôbeing nursedÕ. Study inclusion criteria Participants were sought who: (1) were hospitalized with a diagnosis of major depression, (2) were over the age of 18 years and spoke English, (3) experienced the phenomenon of being nurtured while depressed, (4) were willing to articulate their experience of being nurtured to the interviewer, (5) were interested in describing their experience, and (6) could report to the interviewer their experiences, thoughts and feelings. Ethical issues and informed consent The study received ethics approval from the University Human Research Ethics Committee and from the participating mental health agency. Participants were recruited with the help of senior nursing staff, who identified potentially eligible patients. Potential participants were approached by the senior nurse and provided with an information sheet that outlined the study aim, details about the researcher, expectations of participants, and their rights. Once patients expressed an interest in participating the staff member forwarded names to me. Under the ethical protocol, I then sought the treating psychiatrist’s permission for the patient to participate. All psychiatrists who were approached approved of their patient’s participation. Following this approval the potential participant was telephoned and arrangements made for an appointment time to discuss the study and seek informed consent. Sample Seven participants, six females and one male, aged from 38 to 56 years, were interviewed about their experience of being nurtured while depressed during their stay in a Brisbane, Australia, private psychiatric hospital. Data collection: interviews Participants were interviewed weekly while hospitalized, as I was interested in the experience of being nurtured during the 268 transformative experience of their depressive illness. The number of interviews varied from one, to one participant who was interviewed weekly for 6 months. They ranged from 20 to 60 minutes in length, although considerable time was often spent before and after the interview in general conversation as a means of establishing rapport. All were conducted in the privacy of the participant’s room at the hospital. They were arranged at mutually convenient times, audiotaped and transcribed verbatim by the researcher as soon as possible following the interview. Summary of findings of the study of being nurtured Participants experienced care and nurturing as discrete concepts, with nurturing offering them the therapeutic opportunity to be seen and understood as a person rather than as a symptom or object of the depressive illness. They acknowledged that what they received most of the time was physical care of the body. Little time was given by nursing staff to developing therapeutic relationships. Participants experienced nurturance as fulfilling a deep inner feeling of what was termed as being ÔmotheredÕ. This was not just a set of actions meeting physical needs, but involved the intimate comfort of nurturing of the person as if they were an infant needing understanding and caressing. The findings support the need to develop appropriate nursing interventions to establish a nurturing presence with patients. Challenges when conducting unstructured interviews Effects of experiencing a major depressive illness Interviewing people with a major depressive illness proved to be challenging, as the illness created numerous impediments to both the interview structure and content. One of the challenges of interviewing in phenomenological research is finding a means for participants to reflect on their experience, and for them to communicate this experience to the interviewer. This is challenging for people with a major depressive illness, where the cardinal feature is the draining of meaning from life (Carter 1998). People with milder forms of depression often find relief at being able to vent their feelings, whereas those with severe depression may find little or no benefit in sharing their experience (Bloch & Singh 1999). Depression has been associated with reduced linguistic complexity (Emery & Breslau 1989, Bloch & Singh 1999) that includes thought-blocking and paucity of thought. Such symptoms add to the difficulties of conducting unstructured interviews that require participants to interpret their experience of the phenomena under study. Their limited ability to
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(3), 266–273 Unstructured interviews Methodological issues in nursing research describe their experience, as well as the difficulties imposed by asking them to reflect on an experience that is not only difficult to recall but may at times be painful, has the potential to inhibit the richness of the narrative. For example, a 57-year-old-woman, prior to her ECT treatment, felt she was a Ôstranger among strangersÕ in the hospital. She recalled ongoing difficulties communicating effectively with others and said that communication of her experience was now even more difficult. She was diagnosed with delusional depression with features of psdeuodementia and appeared to be in a vegetative state with a severe slowing of thinking and movement, where her speech was retarded and at times impossible to follow. She also experienced an intense need to protect and isolate herself from all around her and displayed psychotic symptoms such as delusions of worthlessness and guilt. Although I spent 50 minutes with her at the initial interview, the majority of this time was spent either in silence or waiting while she tried to recall her experience. At the first interview she communicated the equivalent of a short paragraph of narrative, with a large section of this being impossible to follow. The symptoms often exhibited by people with depression, such as a loss of a sense of self-control, energy and interest, feelings of guilt, flight of ideas, and difficulty in concentration (Kaplan et al. 1994, Bloch & Singh 1999), create impediments to the flow of their narrative experience. Depressed people have difficulty remembering and a lower rate of both acquisition/recall and delayed memory than nondepressed people (Kaplan et al. 1994). Participants in this study frequently exhibited laboured conversations as they attempted to piece together their experience, interspersed by several periods of lapsed recall. They all described difficulty focusing on the interview task. For example, there were many episodes where I waited for participants to respond to questions, only to find that they had forgotten the question asked. They had become focused instead on their sadness, reiterating how low life was and how they felt they could not go on. Emotional state A person with depression views the world pessimistically and may find it difficult to mask their emotional state (Bloch & Singh 1999). All participants displayed agitation and sadness, and became distressed when trying to recall episodes of being nurtured and found that none were forthcoming. One participant for example, declared that there must have been episodes where she was nurtured, although she could recall none. However, she readily recalled episodes where she had not been nurtured. She became frustrated and angry as she recognized that these were not the types of experiences she wished to recall because they reminded her of some of her darkest hours in hospital. She cursed staff for not being more nurturing of her emotional state. There were a number of times when I felt the need to stop the interview as participants were becoming distressed by the situation. However, on the majority of occasions they were intent on bringing to consciousness their experience and asked for the opportunity to talk through these, no matter how distressed they appeared. Electroconvulsive therapy Treatment for depression also creates challenges for qualitative researchers. For example, continuity of memories may be disrupted during treatment of depression with ECT. Although ECT is considered to have a more rapid up-lifting effect on depressed affect than antidepressants (Hunt et al. 1995), it is also associated with adverse cognitive side-effects such as post-ECT delirious states and memory loss, or impairment in the short term (Devanand et al. 1994, Gelder et al. 1994, Katona 1995, Bloch & Singh 1999). People who receive ECT often complain of inability to remember even the most personal experiences. Study participants reported memory loss in many of their narratives. Reports included minor memory impairment, such as not remembering the interviewer, other patients or family member’s names, nor could they recall the day when they had been admitted to hospital. A touching example of this occurred where a participant reported being unable to remember her favourite nephew’s wedding, even though she had video footage showing her attendance (Moyle & Clinton 1997). A further challenge arose when participants reported difficulty in being able to talk freely after their ECT treatment. For example, one woman informed me that ÔI get ton…, ton… tongue-tied like after the ETC (sic)Õ. Subsequent interviews were planned around ECT so that her communication was distinct. Interview process Further challenges were encountered that impacted on the interview process. These related to informed consent, privacy, interviewer-participant relationships and the need for post-interview debriefing. Informed consent The concept of informed consent assumes the right of participants to be informed that they are being interviewed
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(3), 266–273 269 W. Moyle for research purposes and for them to understand the nature of the research. In this case, participants were informed orally and in writing about the study aims and their role, and were not coerced to participate. At subsequent interviews, to ensure informed consent, they were redirected to the consent form they had signed and asked to verify that the consent still stood. This protocol resulted in one woman reacting angrily towards me. I had initially interviewed her soon after she was admitted to the hospital and the day prior to the start of ECT treatment. Although her condition had retarded her psychomotor abilities, she had provided written and informed consent and her psychiatrist believed she was capable of informed consent. At the second interview she did not recognize me and became suspicious of me, with an angry outburst at the sight of the consent form bearing her signature. She stated that she could not have signed the consent form, despite her obvious signature. The interview was terminated, as I considered it to be causing anxiety and stress for her and I did not consider her to have the capacity for informed consent. I informed staff of this incident to assist in their therapeutic intervention with her. Privacy If an unstructured interview takes place in a participant’s home they can choose to find a quiet place in which to be interviewed. Hospitalized patients, in comparison, generally have limited or no choice of interview setting. In this study participants’ rooms were chosen as this setting was seen as convenient and private. However, the hospital intercom system, telephones ringing, and staff entering the room unannounced created interruptions. These compounded participants’ difficulties in concentrating on the task at hand and negated opportunities to tell their story privately. The issue of privacy was important to participants particularly when they were talking about issues such as their experience of nursing care. They frequently sought from me confirmation that such information would not be given to nursing staff and expressed a fear that nurses would use this information to make their life ÔunbearableÕ, to quote one participant. Researcher–participant relationship Qualitative research requires a personal engagement between interviewer and participant. Ability to establish a sense of trust is considered to be central to seeking an understanding of the phenomena under study and to the richness of the data that unfolds. However, it is also important that participants recognize that the interviewer’s role is that of data collector and not therapist. Participants in this study expressed their 270 pleasure at having the opportunity to talk with me about issues that they felt could not be discussed with nursing staff. Often they perceived staff as uninterested in them as a person. Participants also expressed comfort in what they saw as my willingness to listen to them, and stated that the experience of talking with me was an example of being nurtured. As an experienced clinician and researcher/interviewer I recognized that some participants sought the opportunity to express themselves during the interviews rather than talking with their primary nurse. This was an issue I felt could not be raised with nursing staff without breaking participants’ trust, and it required careful consideration and discussion with my research mentor (an experienced mental health practitioner). We decided that, as the opportunity for participants to communicate their experience was not seen to be harmful, and indeed may have been therapeutic in that it gave them a safe environment in which to voice their experience this issue was placed aside. The importance of a research mentor in such situations is discussed later in this paper. Need for interviewer debriefing Feldman and Gotlib (1993) report that interactions with depressed people may leave those around them feeling negative. Some people have reported feeling depressed and hostile after conversing with depressed people (Coyne 1976, Strack & Coyne 1983, Kaplan et al. 1994). These feelings may also occur after reading transcripts describing depressed people (Gotlib & Beatty 1985, Gotlib & Hammen 1992), and after listening to audiotaped interviews with depressed individuals (Boswell & Murray 1981). This contagion effect has implications for qualitative researchers, who may spend considerable time with depressed participants, tries to understand their experience while listening to audiotapes, re-reads transcripts and engages in analysis of the narrative data. Furthermore, the research process prevents the interviewer from talking to others about individual aspects of the research process. Thus, there is potential for qualitative researchers to feel isolated and emotionally overloaded. In these circumstances it is essential to undergo debriefing after interviewing people who are depressed. I recall being relieved to finalize this study as I was experiencing sad feelings and often anger at the way that I interpreted participants were being treated by staff. I felt distressed when participants stated that they thought staff did not spend time with them in discussion, especially when the foundations of mental health nursing are based on the use of interpersonal processes to bring about positive health changes in patients (Stuart 1995). During this study the interview was not the end point, as I transcribed the data and spent hours in
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(3), 266–273 Unstructured interviews Methodological issues in nursing research data analysis. I felt that I was truly living the experience of the depressed person by being in constant connection with their experience and perceptions. The opportunity to debrief with a mentor provided a release from such feelings. It also gave me the support to continue with the interviews, knowing that I could discuss issues in confidence while not feeling that I was betraying participants’ trust. Methodological issues Bracketing A Husserlian phenomenological research approach encourages researchers to suspend or bracket preconceptions to ÔseeÕ the phenomenological relevance of participants’ experience. By bracketing their common sense knowledge and familiarity with the symptoms and processes of the depressive condition, researchers can attend to the experiences as they are lived and identify opportunities for nurturing (Moyle & Clinton 1997). Interviewers using an approach where bracketing is not required may find it difficult to suspend the idea that participants who are depressed are incapable of providing an accurate narrative of their experience. This may result in either not conducting research in this area or reporting the data from an objective perspective, rather than from that of participants. Interview challenges that emerge as a consequence of depressive symptoms or adverse effects of ECT are difficult to overcome if researchers try to explain the story through cause and effect. Member checks Some qualitative researchers (Lincoln & Guba 1985) suggest that Ômember checksÕ (returning data to participants) are important for testing data interpretations and conclusions. However, this was not possible in this study as two participants could not recall at the end of their interview having ever spoken to me, the interviewer. Thus, they could not state whether they had spoken the words outlined in their transcript or even the situation that they were trying to recall. However, the audiotapes were constantly checked to ensure that the transcriptions were an accurate transcription of participants’ experience. unstructured interviewing, as well as the inherent advantages of interviewing participants more than once. A single interview with a participant may only begin to scratch the surface of their experiences, whereas being with participants over time may reveal the ÔtrueÕ experience. Thus, rather than restricting the use of interviews it is important that qualitative researchers, and in particular novice researchers, are trained to conduct interviews and are equipped to manage any difficulties that may arise. The following section presents several strategies to overcome the challenges of unstructured interviews with people with mental illness. Phenomenological interviews Husserlian phenomenological interviewers must be accepting of participants’ experience. Thus, any ideas that attempt to explain the story must be put aside in order for the narrative to come from participants’ experience. Documentation of the researcher’s assumptions and a reminder of these assumptions during each stage of the research will provide a checking process to ensure that participants’ stories are not being coloured by the researcher’s assumptions. Furthermore, this may be assisted if a literature search of the topic is not completed before interviews are performed. Additional time and resources When interviewing participants who are cognitively impaired, or who have a disorder such as major depression, researchers must allocate additional time to undertake interviews. Participants cannot be rushed when telling their story. Patience must also be shown when they repeat the same story or try to recall an experience that cannot be remembered. Interview process knowledge and experience is essential when conducting unstructured interviews (Minichiello et al. 1997). Once an understanding of interview process has been achieved, a novice interviewer may benefit from undertaking practice interviews with colleagues. This will also allow opportunities for reflection on the suitability of the research question. The availability of additional audiotapes and batteries will accommodate participants’ frequent long pauses as they search for words or thoughts to describe their experience. Strategies and discussion Interviews may create challenges for qualitative researchers but they remain an important means of data collection. Although this particular study was an emotionally draining experience for me, it confirmed the distinct benefits of Research mentor Gathering descriptions of depressed people’s experiences can be emotionally draining as their descriptions and labile moods may leave the researcher feeling mentally fatigued. A
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 39(3), 266–273 271 W. Moyle mentor who is an experienced researcher can provide opportunities for a novice to debrief, as well as providing constructive feedback on interviews. Such a mentor should not only be experienced in research methodology and methods but also proficient in listening skills and providing support through the development of an informal relationship with their protégé. The mentor may also act as a Ôsounding boardÕ during the stages of analysis. Although an experienced interviewer, in this particular study the benefits of debriefing were also evident for me as I constantly engaged with narratives of people with depression during interviews, transcription, analysis and write-up. Debriefing enabled me to retain my sense of self while maintaining a sense of genuine rapport with participants. Research vs. therapy Although it is important that researchers form trusting relationships with participants, it is imperative that participants are reminded that the relationship is one of research and not therapy, even though they may find that telling their story is therapeutic. There is a fine line between the nature of the intimate relationship that is created when qualitative researchers are privy to participants’ stories and seek clinical understanding, and the interest created by participants’ desire for a therapeutic relationship. Researchers must discuss the issue of professional and agency boundaries. Participants need to be informed that the researcher is representing an agency outside the hospital (in this case a university) and that the information they discuss may not assist their recovery (Wing 1999). Thus, the data will not be converted into an advantage to patients in the short term. Furthermore, in the present study, participants were reminded that although the researcher was also a health professional she was not acting in that capacity and that anything they described would be treated as research data and not used to foster their health. This was reiterated at the beginning of each interview. An extremely difficult situation can emerge when the researcher feels a conflict of interest has arisen and that either they have moved beyond the boundary of research or the participant seeks to engage further with the researcher. In such instances, a mentor can help the interviewer maintain the parameters of their role and be a confidante. Conclusion This paper has provided an overview of the challenges of conducting unstructured interviews with people with mental illness such as major depression. 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