OMEGA, Vol. 62(2) 149-168, 2010-2011

MOTIVATION FOR RESEARCH PARTICIPATION AMONG PEOPLE BEREAVED BY SUICIDE

KARI DYREGROV Norwegian Institute of Public Health, Oslo and Center for Crisis Psychology, Bergen GUDRUN DIESERUD MELANIE STRAITON METTE LYBERG RASMUSSEN Norwegian Institute of Public Health, Oslo HEIDI HJELMELAND Norwegian University of Science and Technology, Trondheim and Norwegian Institute of Public Health, Oslo BIRTHE LOA KNIZEK Norwegian University of Science and Technology, Trondheim ANTOON A. LEENAARS Norwegian Institute of Public Health, Oslo, Norway, and Windsor, Canada

ABSTRACT

Few studies directly address vulnerable populations’ motivation for participating in research. Often motives are expressed spontaneously and typically given post-interview. This article investigates motivation for research participation among informants who have been bereaved by suicide. Informants were specifically asked for their motivation either prior to, or directly after the interview. Four categories of motivations were identified: 1) Helping Others, 2) Venting, 3) Insight, and 4) Just Because. Sixty percent 149 Ó 2010, Baywood Publishing Co., Inc. doi: 10.2190/OM.62.2.d http://baywood.com

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of informants gave more than one motivation. The majority was altruistically motivated; they hoped that by taking part they could play a role in helping to prevent suicide, improving services for the bereaved or moving research forward. Close family members were more likely to be motivated by a desire to help others than more distant family members. Findings are discussed in the context of suicide-related bereavements. Information about research participation as beneficial to others should be given parallel to that of possible strain.

INTRODUCTION Individuals who have been bereaved by suicide (am: suicide survivors) can provide valuable information that may ultimately improve suicide prevention as well as postvention. However, due to the belief that they are too vulnerable to take part in research, both researchers and Ethical Review Boards have long been reluctant to involve those bereaved by suicide in research (Jorm, Kelly, & Morgan, 2007). Previous research indicates that despite popular and widespread belief, few participants suffer from adverse effects as a result of having taken part in a qualitative interview focusing on a sensitive issue, including suicide (Corbin & Morse, 2003; Hawton, Houston, Malmberg, & Simkin, 2003). On the contrary, studies show that informants often report such interviews to be beneficial (Cook & Bosley, 1995; Dyregrov, 2004; Dyregrov, Dieserud, Rasmussen, Straiton, Hjelmeland, Knizek, et al, in press; Hynson, Aroni, Bauld, & Sawyer, 2006), although this is typically reported ad hoc. As we have already documented the experience of research participation (Dyregrov et al., in press), we turn to focusing on motivation for research participation among those bereaved by suicide. Using data from an ongoing qualitative psychological autopsy study in Norway, we explore the informants’ motives for research participation, and how these may vary according to certain characteristics of the interviewees. Why Study Motivation? Motivations are typically reported after the interview, during a follow-up. It is not known if participants would have reported different motivations had they been asked prior to the interview. It is plausible that when asked after the interview, a person’s motivations are altered sub-consciously or consciously to fit with their interview experience. Interview expectations and motivation may also influence their perception of the experience. In the current article we will examine if and how motivation for participation differs depending on when participants report them, prior to or directly following the interview. It has been suggested that people usually take part in research because they want something in return, even if they are unaware of it (Corbin & Morse, 2003). In empirical research, motivation is an important consideration. Motivation may be linked to a need

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(Corbin & Morse, 2003; Murray, 1938) and if that particular need, for example, the need to vent feelings, is not met during the interview, this may have implications for the research process. When people bereaved by suicide agree to participate in research, researchers should ask them why they have chosen to. In addition one should ask for their experiences of being interviewed in the “debriefing session” after the interview. Having compatible motivations and experience could minimize an informant’s risk of a negative reaction to the interview. Alternatively, if they were incompatible, then the researcher would be able to address this in the debriefing session and thus, minimize their risk. Very few studies have focused on motives for research participation among those bereaved specifically by suicide and thus we know little about them. What May Motivate Participation? A significant loss may disrupt a person’s general understanding of life. Yet, many people bereaved by suicide are trying to make sense of the loss or to find some comforting aspects of it (Gillies & Neimeyer, 2006). This may be what motivates a person to take part in a research study. Indeed, Kidd and Finlayson (2006) found that some participants thought taking part would benefit them personally by helping them reanalyze their situation. People may also take comfort in their ability to help others; altruism has been noted as a very common motive for people considering taking part in both qualitative and quantitative bereavement research (Beck & Konnert, 2007; Hynson et al., 2006; Seamark, Gilbert, Lawrence, & Williams, 2000). Dyregrov (2004) conducted a follow-up survey 2 weeks after bereaved parents had participated in a survey and a qualitative interview and noted from the responses that helping others was a strong motive for participation. As part of another follow-up study, 2 weeks after initial participation, informants were asked about their motivation for participation (Asgard & Carlsson-Bergstrom, 1991). Findings suggested that the majority took part because it was a scientific study, while a few others participated in order to discuss the suicide with a mental health professional. Corbin and Morse (2003) suggest informants may be searching for confirmation of their own recovery or seeking information about possible support services. Others may decide to take part so they can discuss the suicide with an experienced listener, or they may believe that research in general is valuable (Dyregrov, 2004). Thus, there may well be no singular motivation, but a host of motivations to meet the various needs of bereaved people participating in research (Murray, 1938). Does Motivation Differ According to Characteristics of the Informant? When motivations for research participation are reported in studies, they are typically reported for the group of informants as a whole. Therefore we know little about if, or how, motivations differ according to characteristics of the

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informant. Because women generally tend to view help-seeking more positively than men (Leong & Zachar, 1999), they may be more motivated than men to participate in research in the hope that it will help them personally. Although little knowledge exists, younger people and (ex) spouses could be motivated to take part in order to discuss the suicide with an outsider, as they often struggle to express their feelings to family members (Dyregrov et al, in press). The length of time since the suicide is another factor we know little about in relation to motivations. It is plausible that in cases where the time since the suicide is short, motivations are linked more heavily to a need to discuss the suicide than when a longer period has lapsed. On the other hand, timing could make little difference, considering that people feel ready to participate at different times (Beck & Konnert, 2007). How Can Research Motivation be Explored? While there are several research designs that can be used to gain information about motivation for research participation among vulnerable groups, this article focuses on data from individuals bereaved by suicide. These individuals were asked to participate in a combined narrative and semi-structured qualitative interview. Half of the informants were asked about their motivation for participation prior to the actual interview, whereas the other half were asked immediately after. Although increasing interest has been shown in how individuals bereaved by suicide experience taking part in research, there are very few studies that consider their motivations for research participation, and none consider motivations in relation to the factors discussed above. Aims of the Study The current study aimed to explore the following research questions: • What motivates people bereaved by suicide to take part in qualitative psychological autopsy studies? • How do participants’ motivations vary by: – gender and age – relationship with the deceased – time lapsed since the suicide – whether they are asked before or after the interview METHOD A Phenomenological Approach The data in this article are from an ongoing qualitative psychological autopsy study (PA study) where the main purpose is to generate a phenomenological based

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understanding of the psychosocial mechanisms involved in the development of suicide. Qualitative interviews were the main method used to gather information though suicide notes, where applicable, supplemented the interview data. Interviews began with a narrative section, which opened with the researcher posing a question about the informants’ perception as to what led to the suicide. This part of the interview was steered by the informant as he/she reflected on what might explain the suicide. After this a problem-focused section began, where the interviewer asked focused questions about topics not previously covered in the narrative section, about insights uncovered that needed to be followed-up or to verify that the information was understood. A theme guide consisting of 16 topics based on Shneidman (1993) was used. Themes covered in this include framework: for example the death, and the victim’s personal and family history, relationships, personality, lifestyle, drug use, sexual disposition, strengths, and changes before death. Additionally, for this article, the participants were asked about their motivations for taking part in the research with the questions: Why did you want to take part in this study? What motivated you? For each case of suicide, every other informant was posed these questions prior to the interview while the others were asked afterwards. Sample The sample for the current study included five to eight key informants from each of 17 people who died by suicide. A total of 97 individuals who were close to the deceased were interviewed. Only suicide victims with no prior psychiatric treatment history and no previous suicide attempts were included in the study. Forty-five (46%) of the informants were women and 52 (54%) were men. They included (ex) spouses/partners (11), (step) parents (18), children (7), siblings (16), in-laws (4), aunts/uncles (2), cousins (2), (childhood/best) friends (31), (ex) girl/boyfriends (1), neighbors (1), and work colleagues (4). Ages ranged from 19-82 years (M = 42; SD = 15.2). The female to male ratio of the deceased was 4:13 and ages ranged from 19-62 years (M = 37; SD = 15.9). The methods of suicide included hanging (10), shooting (5), poisoning (1), and drowning (1). All took place during 2005 (1), 2006 (10), or 2007 (6). When an outlier was excluded (eight interviews for one suicide case took place 24-27 months after the death), the time since the death ranged from 5-18 months (M = 10; SD = 3.4). Procedure Chief municipal medical officers in seven of the 19 counties of Norway were asked to identify suicides from death certificates and forensic reports during 2007-2008 and to provide the name of the deceased’s General Practitioner (GP). The GP’s provided the name and address of the person’s next of kin. Five out of the seven counties were able to identify suicides that fitted the inclusion criteria. The person’s GP was asked to confirm if the deceased had received treatment for

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mental health problems and whether or not they had previously attempted suicide. Some informants were alternatively identified by trauma psychologists at the Center for Crisis Psychology in Bergen. An information letter, from the office of the chief municipal medical officer, was then sent to bereaved families. It provided full details of the project and a consent form that the next of kin was asked to return to the project leader should they wish to participate. Upon receiving the consent form, the interviewer contacted the participant to answer any questions about the study and to arrange a time and place for an interview. The informant was also asked to provide a suicide note if this was available. After the interview, they were asked to help recruit four or five other close significant others to participate, and to provide access to their names and addresses. The procedure of sending a letter and consent form was then repeated. Three researchers with extensive experience and knowledge in the field of suicidology and in qualitative interviewing of bereaved individuals conducted the interviews (1st, 2nd, and 4th author). Interviews, which lasted an average of 2.5 hours (range 1.5-3 hours) were audio taped and transcribed verbatim. A coding system for paralinguistic expressions (e.g., pauses, laughter, crying) was used by two trained transcribers to strengthen inter-rater reliability of the transcriptions. The researcher also wrote brief notes about immediate impressions after each interview. Approval to conduct the project was given by the Regional Research Ethics Committee in Southern Norway and by the Data Inspectorate of Norway. Dyregrov et al. (in press) provides a fuller description of the study, procedure, and ethical considerations. Analysis of Data

The relevant parts of the interview transcripts were analyzed using Interpretative Phenomenological Analysis (IPA) (Smith & Osborn, 2008). IPA aims to understand how a person makes sense of a particular event, i.e. how they perceive or experience this. The procedure of analysis followed a five-step phenomenological mode of analysis: 1. After the interview had been conducted, tape-recorded, and transcribed, the entire interview was read through by the researchers to get a sense of the whole. 2. Phrases or sentences (“meaning units”) that directly pertained to the phenomena under investigation (the informant’s motivation for research participation), were extracted from the transcribed interviews. 3. The themes that dominated the natural meaning unit were stated as simple as possible in a more professional language, moving from specific expressions to general categories. 4. The meaning units were synthesized, resulting in a structure of the bereaveds’ perceived motivations. Thus, the expressed meaning was condensed into

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increasingly more central categories representing the meaningful themes. Repeated evidence of similar expressions across the interviews resulted in identification of key categories. 5. The essential themes of all interviews were compiled into descriptive statements of the core component of the phenomenon and discussed with existing and relevant theory (Kvale, 1996; Smith & Osborn, 2003). Consensus for the categories was achieved after thorough discussions between the authors of the article. The whole group of suicide researchers read the transcripts concerning the participants’ motivation, and three had also conducted the interviews. A pragmatic consensus was reached for the main categories. The main categories (altruism, insight, venting, and “just because”) were used together with background variables for the quantitative analyses. 2 × 2 Chi-square analyses were conducted for each motivation with categorical variables while independent t-tests for each motivation were conducted with the continuous variables: Age and Elapsed Time. SPSS was used for these analyses. Some examples of statements made by informants have been chosen to point out typical characteristics of the participants. These were translated from Norwegian to English by the researchers in collaboration with the native English speaking third author who also speaks Norwegian. RESULTS Motivations for Participation Informants had numerous and varied motivations for participating in the research. Of the 97 participants, the motivations of five people were not recorded (e.g., missing data, no motivation could be deduced). This led us to exclude two friends, one parent, one partner/spouse, and one work colleague (2 females and 3 males) from the analysis. Analysis of the other 92 responses (95%), after discussion between interviewers, suggests that motivations can be divided into four main categories: Helping others, Venting, Insight, and “Just because.” It should be noted, as Murray (1938) and Shneidman (1985) presented, that many participants had several motives for participating and as a result, tended to fall into more than one of these categories. We will next examine each of these categories in some detail. Helping Others

An overwhelming majority of the informants (N = 78, 85%) responded with statements indicating that their motivation for taking part was linked to altruism. Some individuals made general statements saying that they simply wanted to help. Others were more specific about their reasons, with a large number wanting to improve current knowledge, raise awareness of suicide and to help others who

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were bereaved. This group talked about helping the researchers to find answers to “why it happens,” hoping that the study would “uncover a pattern,” or “shed light on things” and thereby help others. They hoped that by focusing more on suicide, this phenomenon could be moved away “from being a taboo.” Some informants explained that they had spent a considerable amount of time reading and learning about suicide but found that explanations often revolved around “psychiatry and psychiatry and psychiatry.” Because their loved one’s suicide could not be explained by a known mental health illness, they welcomed another type of research than the kind that is focusing on psychiatric illness. They “had the feeling that this was important.” These responses suggested that the informants understood the importance of the research and wanted to help improve knowledge outside of the traditional mental illness model. With their wish to improve the general understanding of suicide, many informants presumably hoped this would ultimately lead to better ways of preventing suicide. Indeed, a large number of the bereaved did explain that they were motivated to participate in the hope it would help “prevent something like this happening again,” “identify others,” “avoid such tragedies” or “help it happen less.” For some, it was clear they had experienced guilt over the death; feeling that they “had not been there” for the person. Thus, participation may have given informants a sense that they were helping to save others, perhaps easing some of their guilt. A few participants also expressed that they had a desire to engage in preventive work but were either unsure how to go about doing so, or had received little response from the institutions and networks they had approached that were associated with suicide prevention. The opportunity to participate in the study therefore, gave them the chance to fulfill their desire of helping in some way. A number of informants also said they would gladly assist further in the study, should the researcher have a need for it. Helping other people bereaved by suicide was another fairly common wish among participants in this group. They explained that they had experienced sadness, pain, guilt and confusion after their loss and hoped that the project would “help others in the same situation” or “maybe help those who are left behind” by giving them some answers to the why questions. Some informants were more specific, indicating that they wanted to help a family member of the deceased. A hope for future improvement of services available to the bereaved motivated a number of informants to take part. These informants had felt dissatisfied with the care and support they received from services after their loss. Their dismay was conveyed with phrases such as “it’s a system that I have totally given up on” and “there wasn’t any service to help us.” It was hoped that others would eventually receive better care and follow-up than they themselves had received. Indeed, some participants said they were actively involved in improving support services. Additionally, it was clear that in this group, many were motivated to take part by a feeling that they would be able to make the most out of a bad situation.

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They recognized that nothing could be done to bring the deceased back, but that in sharing their experiences, they would perhaps be able to help someone, in some way. They were looking to “make the best out of it;” perhaps giving meaning and purpose to the difficult experience. A man who had lost his younger brother said: What I thought, you know, was that . . . there isn’t that much a person can do, and now I can’t do anything for my brother but em what I can do, I guess, is at least try to come up with something that can prevent this, so that it is, well, just to try and do something . . . good with the situation. Venting

Having the opportunity to talk to a person with knowledge about suicidology was a motivation cited by several participants (N = 17, 18%). Many felt that they were unable to talk openly with other people, especially those outside of the family, and hoped the interview situation would give them a chance to vent their thoughts and feelings with someone who listened. Some participants experienced that other people did not “understand them” or “didn’t want to talk about it” and could feel quite isolated as a result. The bereaved believed that discussing it would “maybe make it easier to carry” and “relieve a little of our stress.” Some felt it would be good to “review” the deceased’s life and suggested that this could be a good chance to discuss the death before moving on. A woman who lost her best friend reflected this: I actually look at it as a bit like therapy for me, that it could be very useful to talk about it Because I’ve basically only really had [the deceased’s] family to talk about it with and it isn’t always, well it’s good but, I haven’t felt that I’ve been able to talk that much about it with other friends. . . . So it is, well, a good opportunity for me to maybe draw a line under it, at least for now.

In addition, a few informants said they were keen to take part after hearing positive reports about the researchers’ skills and experience from other bereaved family members/friends who had previously participated. They believed that the interview could also help them. Insight

Through the interviews, some individuals (N = 18, 20%) also hoped to gain some insight, either into the specific suicide or into suicide in general. They had “many questions,” wanted to know “why, why, why,” and were always “searching for the reason.” The informants in this group hoped not only to learn a bit more about why people choose to take their own lives but also to talk about their own speculations surrounding the death. Several had searched for answers since the death by reading literature or attending information events but had never really felt they got sufficient or suitable answers. Although the bereaved accepted that they would never know for sure, they felt that the interview might help to

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“shed some light” over the suicide. One man, who had lost his stepdaughter, expressed the following: I don’t know, we thought, when this happened, then we thought that it was, in a way, yes, I felt that it was kind of a surprise for me, personally. We are a bit, we want to know really how and why these things can happen because we just don’t understand or conceive it. Because it was such a surprise . . . (Interviewer: Yes, so it is to get some answers then.) Yes, that’s the reason. . . . I hope that it, it is probably difficult to know exactly when it concerns [the deceased], to know completely 100% why it happened. And I have in a way, my theories about why it happened . . . “Just Because”

The final category mainly contains arguments that there was no reason not to take part (N = 34, 37%). The informants could not see participation to be problematic. They made statements such as “I have nothing to lose,” “it costs me nothing,” “It isn’t a problem for me,” or it would be “stupid to say no.” Others suggested that they took part because it was research; saying it is “very interesting to take part in a research study.” A number said they took part because a family member of the deceased asked them and as such, it was “natural to say yes.” They felt the deceased “was quite a large part of my life” or “a good friend.” Many went on to indicate additional, often altruistic reasons too; having a desire to help the deceased’s family, sometimes saying that they “owed it to” the family and/or the deceased. Overall, many of the informants actually had a combination of motives for participating in the study and 43 of them (47%) were verified into more than one of the above categories (see Table 1). This can be seen from the response from a young man who had lost a close friend: Mmm, there are several reasons. The first is that I think it would do me some good, to just talk a bit about it, because there aren’t that many people I can do that with, other than his parents. And, secondly, I want to help his parents, um. because they don’t understand anything. And . . . yeah and so . . . it’s like, he was my best friend you know, I do . . . I will happily come and help . . . yeah . . . to prevent it happening to others.

Exploration of Background Variables Although the research design was a qualitative one, we wanted to explore whether the informants’ motivations varied with gender, relationship, age of the informant and time since the suicide. We also wanted to see if there was a difference in motivations cited with those informants who were asked before the interview from those who were asked after the interview. Since the sample was large, basic quantitative analysis of the data was possible.

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Table 1. Overlap in Participants and Categories No. categories

No. participants

1 category only Helping Others Venting Insight Just Because

40 2 2 5

2 categories Helping Others + Venting Helping Others + Insight Helping Others + Just Because Venting + Insight Venting + Just Because Insight + Just Because

7 6 14 0 1 4

3 categories Helping Others + Venting + Insight Helping Others + Venting + Just Because Helping Others + Insight + Just Because Venting + Insight + Just Because All 4 categories

1 5 4 0 1

Gender

No significant gender differences were found across any of the motivational categories. However, there was a tendency for women to be more likely than men to have Venting as a motivation (c2 = 2.704, df = 1, p = 0.1) (26% and 12% respectively). Relationship with Deceased

There was a range of different relationships that the informants had with the deceased, resulting in very small numbers in some of the categories. In order to conduct Chi-square analyses, the relationship categories were merged into a dichotomy variable in the following way: 1. Close family (N = 50): Parents, (Ex) Spouse/Partner, Siblings and children; and 2. Extended family/Friends/Acquaintances (N = 42): Uncles/Aunts, Cousins, In-laws, Friends, Boyfriend/Girlfriend, Work Colleagues and Neighbors.

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Ninety-two percent (N = 46) of close family had Helping Others as a motivation while significantly fewer, 74% (N = 31) of the other group did (c2 = 4.422, df = 1, p < 0.05). No other significant differences in motivations were observed between the two groups. Age of Informant

The only significant difference for Age was in Helping Others (t = 2.035, df = 90, p < 0.05). Informants classified as having the motivation of “Helping Others” were significantly older (M = 43.35 years) than those who did not have this as a motivation (M = 34.57). Elapsed Time

A significantly longer time period had elapsed between the death and the interview for those who were categorized as being motivated by Insight (13.50 months) than those who were not (10.31 months) (t = 2.30, df = 1, p < 0.05). No other differences in elapsed time were found. Asked Before or After Interview

Of the 92 informants, 44 (48%) were asked about their motivations before the interview while the other 48 (52%) were asked at the end of the interview. Insight was more often given as a motivation by those asked before the interview (27%) than by those asked afterwards (13%), though this tendency was not significant (c2 = 3.183, df = 1, p = 0.74). DISCUSSION This study is one of few directly addressing motivations for research participation of individuals bereaved by suicide. The results shows that the majority of the informants were motivated to participate in the qualitative psychological autopsy study because they believed that this would somehow be of help to themselves and/or others. The bereaved wanted to take part because of several different, but also partly overlapping motivations. They believed that the results from this research would help other bereaved people in the future, that the interview could yield an improved understanding of the suicide, or that they might have the opportunity to vent their thoughts and feelings. “True Altruism” as a Motive for Meaning Making After a death by suicide, most individuals close to the deceased are left behind with a disrupted reality. Means of re-creating coherence and meaning in life become very important in the process of going on with life (Neimeyer, 2001).

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One way of doing this seems to be through altruistic acts, for example. by making it a little better for those who will experience the same loss in the future or by helping science move a little forward (Dyregrov, 2004; Dyregrov et al., in press; Neimeyer, 2001). A huge majority in this study mentioned this motive either alone or together with other motives for research participation; that is, only 14 participants did not mention helping others as a motivation. As shown by other studies, they hoped that increased knowledge of the topic would improve the situation for other people suffering bereavement in the future (Cook & Bosley, 1995; Dyregrov, 2004). Studies of altruism have shown that people may be more willing to participate if they believe that the potential benefits of their participation are large (e.g., life versus death), highly likely to materialize, quickly attained, likely to accrue to something important to them, and/or dependent on their specific (not easily substitutable) contribution (Williams, Entwistle, Haddow, & Wells, 2008). Most of these motivational factors were present in our study. In addition, the informants hoped to gain better support from social networks through increased knowledge and raised awareness of the situation for people bereaved by suicide in general. Besides, as stated in the interviews, by giving professionals a clearer insight into grief, they hoped that assistance for the bereaved could be improved (Dyregrov, 2004). Contrary to those who are motivated by what Canvin and Jacoby (2006) call “weak altruism,” namely, instances in which individuals are “happy to help others but only where they could also help themselves,” it seems as if the bereaved in our study were also motivated by what Hallowell’s research group defined as a more “pure” altruism. This implies that informants may participate without expecting any personal gain, but want to “help someone out there in the more distant future” or “help science” (Hallowell, Cooke, Crawford, Lucassen, Parker, & Snowdon, 2010). This is what is termed “true altruism,” acting with the goal of benefitting another without gaining from it themselves (Piliavin & Charng, 1990). Several of the bereaved also uttered a genuine wish that they might help prevent other people experiencing their atrocities. In this way, the altruistic motivation represents an active and externally direct adaptive coping strategy. Besides, this may be a particularly important motive that may give the bereaved individual an opportunity to change his or her ongoing relationship with the deceased. As such, the altruistic motivation may also help the bereaved help themselves (Neimeyer, 2001). Therefore, as has been pointed out by other researchers, this is a personally and socially desirable motive; and one that researchers also could include among the gains for participation when listing the possible negative consequences of research participation (Burns, Reid, Toncar, Fawcett, & Anderson, 2006; Williams et al., 2008). The quantitative analyses showed that informants classified as having the motivation of “Helping Others” were significantly older than those who did not mention this as a motivation. In addition, close family members were significantly

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more likely to give “Helping others” as a motivation than the more distant group. This makes sense when we consider that so many close family members feel rejected because the deceased has not asked them for help or support during the build-up to the suicide. Therefore, it is important for many bereaved to finally be able to help in some way. There is however, previous little research that has studied how altruism in research participation is linked to age or relationship among the bereaved specifically, or sensitive groups in general. Studies investigating motivations tend to be looking at one group, for example, adults (Beck & Konnert, 2007) or parents (Dyregrov, 2004), where the age group is thus limited. Perhaps older people pose more existential questions after such life experiences than younger people do? Studies have shown that parents, siblings and spouses struggle with complicated grief reactions after a suicide more often than the bereaved who have a more distant relationship (Dyregrov, Nordanger, & Dyregrov, 2003; Mitchell, Kim, Prigerson, & Mortimer-Stephens, 2004). A closer look at our data shows that although the mean age for “close family” (43.34) was not significantly higher than the other group (40.45), 62% of the informants in the close family group are over 40 years of age. In group 2, only 50% of the group is older than 40 years. There is also a substantial difference in median age; 48.5 for close family and 40.0 for the other group. Therefore, we tentatively suggest that close family members have a stronger need to make sense of the suicide and that in our sample these individuals may have been slightly older. The finding may imply that researchers should pay particular attention to meaning making for this sub-population in the debriefing session after the interview. This means that if we know people’s specific reasons for why they are choosing to participate in the research, researchers can more directly and empathically address those expectations and needs during the conversation after the interview. Insight as a Motivation to Understand the Incomprehensible Another central finding was that many of the bereaved had been motivated to participate in the research by a need to gain more insight or understanding of the suicide. This is not surprising, knowing that nearly all those bereaved by suicide strive to understand why it occurred (Asgard & Carlsson-Bergstrom, 1991; Cook & Bosley, 1995). They are faced with the challenging task of reconstructing a personal world of meaning after the traumatic death (Jordan, 2001; Lester, 1997; Shneidman, 2004; Wertheimer, 1999). Interestingly, there was a tendency for Insight to be given more often as a motivation by those asked before the interview than by those asked afterwards. There could be different explanations to this finding. First, the concept of Insight could have changed as they learned about the complexity of suicidal behavior through the interviews. After the interview, several informants told us that they had come to accept that they would never get one clear answer as to what caused

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the suicide. Rather than searching for one answer, they began to understand the suicidal process as a far more complex context than they previously had thought (Dyregrov et al., in press). Despite the initial goal of having “the answer,” many realized that this was an unrealistic expectation of the interview but nonetheless believed (or had heard from others) that the interview highlighted some important aspects they had not previously thought about. Instead, they had learned something about suicide in general, rather than about their specific case. Secondly, the tendency that a longer time had elapsed between the death and the interview for those who were categorized as being motivated by Insight than those who were not, may be explained by the fact that many people bereaved by suicide start searching for an answer some time after the death, when the initial shock and confusion have somewhat diminished. Most people will be more able to reflect as times passes and their cognitive capacities increase again (Dyregrov & Dyregrov, 2009). It seems as if these informants were motivated for research participation by the process of “leaving not a stone unturned” in order to obtain some additional insight into the suicidal act (Gillies & Neimeyer, 2006; Neimeyer, 2001, 2006; Wertheimer, 1999). In this way, the research interview had a constructive and positive influence, as experienced by the participants. Besides, it is worth noting that very few were motivated to participate purely in order to understand the suicide; most people in this category cited other motivations too. Venting as a Motive to Reduce Internal Pressure As has been shown in other studies involving vulnerable populations, people often struggle to come to terms with the death and some may look at the interview as an opportunity to get help (Dyregrov, 2004; Dyregrov, Dyregrov, & Raundalen, 2000; Kidd & Finlayson, 2006; McMenamy, Jordan, & Mitchell, 2008). Some bereaved in our study also appeared to be motivated by a need to discuss and tell their story. As was expressed during these interviews, some wanted to participate in order to dwell on the death one final time before closing that chapter and trying to move on with their life. As previously documented, the positive experience of venting thoughts and talking about the memories of the deceased seem to facilitate continued bonds with them (Dyregrov et al., in press; Gillies & Neimeyer, 2006; Klass, Silverman, & Nickman, 1996). As such, the motivation of having an opportunity to vent thoughts and feelings may be fulfilled (Dyregrov et al., in press). In our sample, more women than men tended to have Venting as a motive for research participation. As has been documented in previous research, bereaved females generally want to talk more about grief and loss experiences than males (Stroebe & Stroebe, 1989). Talking about their thoughts could contribute to the reduction of inner tensions and sadness. Many lack the opportunity to talk to someone who possesses knowledge about suicidal processes (Dyregrov & Dyregrov, 2009; Provini, Everett, & Pfeffer, 2000; Wilson & Clark, 2005).

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However, we should also be aware of the danger of prolonged rumination. Stroebe and Stroebe (1989) found that depressed widows were more likely to agree to participate in bereavement research than depressed widowers. This perhaps implies a sex difference in coping styles and could suggest that some of the women who use interviews as an opportunity to focus on the death may be suffering from depression (Rose, Carlson, & Waller, 2007) or complicated grief (Mitchell et al., 2004). Thus, researchers should be cautious when dealing with informants who are motivated to participate by a desire to vent emotions, especially if they are female. Some could be in need of professional help, for example, for complicated grief or depression. “Just Because”—Including Different Kind of Motives? Finally, a small group of bereaved came up with “Just because” as a motive to participate. This represents a complex category because it included people who did not really know or had no strong opinions of why they chose to participate. These participants seemed to be lacking explicit motives that were well thought through but nonetheless wanted to take part in the study. When asked, they had various explanations that may be interpreted in different ways. A number of informants reported that they considered participating but did not respond to the letter of invitation until they were contacted by a close family member of the deceased. They might have felt obligated to participate since a family member had asked them. This raises the issue of pressurized participation when using snowballing methods (Brace-Govan, 2004). Another question related to this is whether it is hard to refuse participation due to feelings of blame and guilt over the suicide? Alternatively, it could be difficult to decline taking part because altruism is strongly signaled by other participating friends or family members. There is also the possibility that the informants in the “Just because” category did not feel obliged to take part and had actually wished to contribute. It may just have been that they were less directed by their needs than others. Some individuals said they wanted to take part because the deceased was a good friend and in this way, they had a chance to honor and remember their friend. In addition, in line with other findings, giving recognition to those who carry out research or to other family members who took part seemed also to be motivating factors among some of the bereaved in this group (Kavanaugh & Ayres, 1998). Some people simply felt there was no reason not to participate. Perhaps they actually wanted to help others, but just failed to articulate this? Considering the fact that up to 20% of individuals bereaved by a trauma do not feel a great sense of grief either immediately following the death, or later (Bonanno & Kaltman, 2001), there is a possibility that these people will more readily participate in research compared to other informants. Besides, many of those who were motivated to participate “Just because” were at the same time glad to have the opportunity to help in the study or expressed a willingness to help

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further. Therefore, we may question whether informants with fewer negative reactions and higher levels of true altruism may be overrepresented in this group? If so, we will probably see that bereaved motivated by “Just because” will be more apt to participate in research than other bereaved. Limitations and Strengths of the Study • The study is based on an extensive and unique data set stemming from 92 individuals bereaved by suicide. Unlike many other studies involving bereaved, the informants had a broad variety of different relationships with the deceased. Moreover, triangulation is used with regard to methods as well as researchers. • The combination of quantitative and qualitative data gives important knowledge that may help to interpret the results more adequately. The large amount of qualitative data made it possible to talk about qualities as well as to quantify some issues. The qualitative analysis has allowed us to identify motivations participants have while the quantitative analysis has helped identify motivations that vary with background variables of the bereaved. We have been unable to identify any other studies involving this group having done this. • The sample was recruited for a qualitative design, without attention to representativeness. What is considered a strength for the qualitative data, may be regarded as a weakness concerning the quantitative analyses. • Although a very large sample size for qualitative data, quantifying the data led to small numbers in each group, and thus gave us low power in many of the statistical calculations. Therefore, there are limitations to the generalizability of the quantitative analyses exploring the influence of the background variables for motivation. • Having several researchers involved in the qualitative analyses strengthens the validity of the findings. • The uniqueness of the data is also linked to the fact that the deceased had no previous treatment in mental health or any previous suicide attempts. The bereaved of such suicides may therefore be more strongly motivated to find answers or create meaning from the event in order to go on with life, than, for example, other bereaved groups. • Some participants were more reflective about their motivations than others but we do not know if participants gave all their motivations. They were asked directly before or directly after the interview, and thus may have been thinking too much about what was to come or contemplating what had been said during the interview to give full consideration to this question. In addition, there is a possibility of post hoc rationalization of interview experience. • It is likely that had informants been asked through a survey, or given some prompts, responses may have been different from what we found. Still, we believe that what came first to their minds when asked an open question about motivation may be even more valid than answers given to pre-fixed alternatives.

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CONCLUSION In order to ensure ethical standards in research with vulnerable populations, researchers should try to be aware of a participant’s motivation and try to meet their needs. The study shows that close suicide bereaved are motivated to participate in qualitative interviews by multifaceted motives that seem to be both personal and social in origin. Still, we will stress the importance of the researcher behaving in an organized and caring way before, during, and after extensive interviews (Dyregrov, 2004). Information of possible risks of participation, as well as guidance about potential positive aspects should be included in information letters initially sent to potential informants. Furthermore, a short debrief section at the end of the research interview, where the researcher tries to address the person’s motivational expectations and outcome would be of importance. If deemed appropriate some general information on the complexity of the suicidal process in general may help the informants loosen their grips on one salient factor being totally responsible for the suicide. In addition to mentioning possible risks, it will be important to inform about the socially desirable act of research participation as a behavior benefiting others, as being reported from the bereaved themselves (Williams et al., 2008). The overall impression given in the interviews was that the informants seemed to be resourceful people. They had reflected motives for participation and therefore should be allowed to decide for themselves as to whether or not they should participate in research. REFERENCES Asgard, U., & Carlsson-Bergstrom, M. (1991). Interviews with survivors of suicides: Procedures and follow-up of interview subjects. Crisis: The Journal of Crisis Intervention and Suicide Prevention, 12, 21-33. Beck, A. M., & Konnert, C. A. (2007). Ethical issues in the study of bereavement: The opinions of bereaved adults. Death Studies, 31, 783-799. Bonanno, G. A., & Kaltman, S. (2001). The varieties of grief experience. Clinical Psychology Review, 21, 705-734. Brace-Govan, J. (2004). Issues in snowball sampling: The lawyer, the model and ethics. Qualitative Research Journal, 4, 52-60. Burns, D., Reid, J., Toncar, M., Fawcett, J., & Anderson, C. (2006). Motivations to volunteer: The role of altruism. International Review on Public and Nonprofit Marketing, 3(2), 79-91. Canvin, K., & Jacoby, A. (2006). Duty, desire or indifference? A qualitative study of patient decisions about recruitment to an epilepsy treatment trial. Trials, 7, 32. Open Access www.trialjournal.com/content/7/7/32 Cook, A. S., & Bosley, G. (1995). The experience of participating in bereavement research: Stressful or therapeutic? Death Studies, 19, 157-170. Corbin, J., & Morse, J. M. (2003). The unstructured interactive interview: Issues of reciprocity and risks when dealing with sensitive topics. Qualitative Inquiry, 9, 335-354.

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