Chapter 3 Research Methodology
3.4 Ethical Considerations
Bereaved individuals are considered a vulnerable population to whom special ethical considerations apply when conducting research. Although ethics committees have traditionally steered away from or taken extreme precautions concerning research with vulnerable groups (Moore, Maple, Mitchell, & Cerel, 2013), evidence over the last decade suggests that limiting access might not only restrict the evidence base, but may also deprive bereaved individuals of a range of benefits (Alexander, 2010). Despite sometimes experiencing intense emotional reactions, the majority of bereaved people do not describe research engagement as adverse and report the impact of participation as overwhelmingly positive (Buckle et al., 2010). Following participation in grief-related research, bereaved individuals have reported benefiting from therapeutic or cathartic gains, social connection, insight, meaning-making, and the altruism of knowing that one’s experiences might help others (Buckle et al., 2010; Dyregrov, Dieserud, Hjemeland, et al., 2011; Koffman et al., 2011). Likewise, in a study of bereaved individuals who had not previously participated in any bereavement research, Beck and Konnert (2007) found that the majority perceived bereavement research as worthwhile (98.1%), and beneficial to the self (84.4%) and others (94.0%). Risk of an adverse experience in bereavement research is considered lowest when bereaved individuals are competent to consent (e.g., showing rational thinking and ability to regulate emotion), are given adequate time and space to express their feelings, and have the sense that they are understood by the researcher (Beck & Konnert, 2007). Consequently, the researcher focused on demonstrating skill, experience, respect, and sensitivity in responding to and holding each grief story throughout the interviews (Dyregrov, Dieserud, Hjemeland, et al., 2011).
Prior to commencing the research, ethics approval was granted by the Curtin University Human Research Ethics Committee (HREC), approval number RDHS-12-15. The National Statement on Ethical Conduct in Human Research (National Health and Medical Research Council, 2007) and Australian Psychological Society Code of Ethics (Australian
Psychological Society, 2007) were adhered to in the design, collection, and reporting of data.
Phases Two and Three required the collection of data from human participants and thus attention was given to ensuring informed consent was given, the research ensured greater good than harm to participants (beneficence), data were treated as private and confidential, and procedures were in place for the safe storage and handling of data.
3.4.1 Informed consent
In both phases, a minimum age of 18 years was set, recognising the sensitivity of the topic and importance of full informed consent. In Phase Two, participants read an information statement and consent form prior to entering the survey. This declaration informed participants of the purpose and requirements of the study, potential risks and benefits to participation, and provisions for use of the data. Participants were only permitted to move onto the survey once they had ticked a box of consent and entered their age as 18 years or above. It was made clear that participation was voluntary and participants could choose to withdraw from the study without consequence by closing their web browser at any point during the data collection process. Participants were advised that their online data was non-identifiable, therefore, captured data could not be deleted should they choose to withdraw from the study.
In Phase Three, respondents read an information statement and consent form prior to scheduling an interview. This declaration informed respondents of the purpose and requirements of the study, potential risks and benefits to participation, provisions for use of the data, and the necessity of audio recording. Respondents were invited to have a family member or friend sit with them during the interview (although no respondents actually chose to do so). When scheduling the interview (via telephone or email), respondents were informed about what to expect during the interview and were invited to ask any questions. At the beginning of the interview, respondents were given a paper copy of the information statement and consent form, with no interview commencing until the respondent showed a complete understanding of what participation entailed, had any questions answered, and signed the consent form. It was made clear that participation was voluntary and respondents could choose to pause, stop the interview, or withdraw completely without consequence. Respondents were advised that if they withdrew from the study at any point, all information they had provided would be confidentially destroyed.
3.4.2 Non-maleficence and beneficence
Across both phases of data collection, it was expected that the potential benefits of this research would outweigh any potential risks. In Phase Two, participants were asked to refrain
from participating in the study if they expected to experience significant distress as a result.
Contacts for mental health supports were offered at the beginning of the survey so that they were available to all participants, regardless of completion status. As an acknowledgement of time and effort, participants were given the opportunity to enter a prize draw to win one of four $50 iTunes/Amazon gift cards following completion of the survey, or have the sum of the voucher donated to a charity of their choosing.
Recognising the greater degree of self-disclosure in Phase Three, several strategies were put in place to ensure that the benefits of participation outweighed any potential risks to the bereaved individuals. As recommended by Buckle et al. (2010), it was made clear that the welfare of respondents came before the welfare of the research. Although a semi-structured interview guide was flexibly followed, respondents were invited to direct the course of the interviews and build their grief narrative according to how they made sense of it (Williams et al., 2008). Buckle et al. (2010) pose the following question: “are we causing or inducing pain when we ask research participants about their experience of the death of their loved one or are we bearing witness to the pain that is already there?” (p. 117). It was anticipated that the opportunity to express one’s grief and have it empathically listened to would result in greater good than harm and could ameliorate some of the isolation often reported in bereavement.
Even so, throughout the interviews respondent distress was carefully monitored, queried, and responded to. There is little consensus amongst bereaved individuals about when and how is appropriate to contact a bereaved person to invite them to participate in a grief-related study (Beck & Konnert, 2007). Consequently, no constraints were passed on the time that had passed since the death, but rather it was decided on theoretical grounds that respondents should decide if and when they were prepared to discuss their bereavement (Williams et al., 2008). In line with recommendations by Dyregrov (2004), respondents were encouraged to choose a location for the interview which they identified as safe and private, given time to pause and reflect throughout the interviews, and invited to review and offer feedback on the findings. A list of bereavement-specific mental health supports was given to respondents upon completion of the interview and again when the respondent validation was sent out. In recognition of their time, respondents were offered a $15 Coles/Myer gift card, or have the sum of the voucher donated to a charity of their choosing.
3.4.3 Privacy and confidentiality
Through online data collection, participants in Phase Two were non-identifiable and offered complete anonymity in participation. The main survey and prize draw survey were conducted independent of each other, ensuring participants’ email addresses could not be linked to their survey data. To facilitate the process of respondent validation in Phase Three,
respondents were re-identifiable through allocation of a unique identification number at the point of interview which permitted cross-reference between their consent form and data.
Respondents were known only to the researcher and following interview transcription, all audio files were permanently deleted. Across both study phases, participants were not referred to by name in any resultant publications. In Phase Two, complete anonymity of participants was preserved and in Phase Three, pseudonyms were chosen to only reflect the gender of the respondent.
3.4.4 Data storage and handling
All audio recordings, digital transcripts, and data files were stored in a private file on a password-protected computer at Curtin University. For Phase Three, all consent forms, demographic questionnaires, self-report measures, and respondent validation letters were stored in a locked filing cabinet in an office at Curtin University. Only the researcher and supervisory team were granted access to the data and its contents will remain stored for a period of seven years before being securely disposed of as per ethical requirements.
3.5 Conclusion
This chapter comprised an overview of the methodology and methods used to collect and synthesise the data which addressed the overarching research aim. The rationale for adopting a pragmatist philosophy and mixed method design was outlined, alongside a summary of key strengths and limitations of this approach for bereavement enquiry. The research was briefly described, across its three phases, with detailed discussion of the participants, methods, procedures, and data analysis presented across Chapters Four, Five, and Six. The chapter concludes with a review of ethical considerations relating to bereavement research and this project specifically. The following chapter (Chapter Four) offers a detailed description of Phase One of the research, a systematic review of the literature exploring key determinants of social support following bereavement.