Qualitative bereavement research: incongruity between the perspectives of participants and research ethics boards

Buckle, Jennifer L.; Dwyer, Sonya Corbin; Jackson, Marlene

doi:10.1080/13645570902767918

Cited by 84 publications

(98 citation statements)

References 33 publications

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“…On the contrary, the qualitative results suggest that many of the bereaved parents felt 'empowered' and grateful to describe their experience. Others have also suggested that there are positive benefits for bereaved parents when they are able to recount their experience with an interested and engaged researcher (Buckle et al, 2010;Brabin and Berah, 1995). This was also anecdotally observed by our research team, who reported that engagement by the hospital staff improved over time and they became more receptive to contacting the team about eligible participants as they witnessed the positive responses by the participants.…”

Section: Qualitative Commentsmentioning

confidence: 63%

“…Stillbirth research is often hampered by 'gatekeepers' such as ethics committees, hospital staff and even close family members who try to protect bereaved families from undue distress potentially resulting from recruitment by research staff at such a vulnerable time (Dent et al, 1996;Sque, 2000;Dyregrov, 2004;Buckle et al, 2010). Healthy, pregnant women are also perceived to be in a 'vulnerable' condition and are subject to the same sort of well-meaning protective behaviour (Wild, 2012).…”

Section: Introductionmentioning

confidence: 99%

“…However 99% still viewed the study as valuable. One paper which explores the incongruity between the perspectives of participants and Research Ethics Boards states this is an important area for further research as the decision of the latter has the potential to influence the experience of the former (Buckle et al, 2010).…”

Section: Introductionmentioning

confidence: 99%

“…Despite this, there is little empirical work examining the responses of bereaved individuals to participation in research (Beck and Konnert, 2007 have done so include bereaved participants who had experienced the loss of a parent, spouse or other family member (Cook, 1995;Buckle et al, 2010), the loss of a child or other family member due to cancer (Seamark et al, 2000;Scott et al, 2002;Kreicbergs et al, 2004), parents who lost their child through Sudden Infant Death Syndrome, suicides or accidents (Dyregrov, 2004), and parents who lost their child through a chronic progressive condition (Hynson et al, 2006). One study that recruited via on-line grief support groups examined the theoretical opinions of bereaved adults regarding ethical issues in bereavement research, however only six of the 316 respondents had previously participated in a research project (Beck and Konnert, 2007).…”

Section: Introductionmentioning

confidence: 99%

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Anxiety and acceptability related to participation in stillbirth research

2015

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a b s t r a c tBackground: stillbirth research is often hampered by the need to 'protect' both bereaved families as well as healthy pregnant women from distress resulting from recruitment by research staff. No studies have investigated anxiety levels of recently bereaved or healthy pregnant women participating in stillbirth research. The aim of this study was to assess anxiety levels and acceptability of women participating in a stillbirth case-control study. Method: a follow-up questionnaire was posted to all participants of the Sydney Stillbirth Study in 2012. The questionnaire assessed the anxiety level experienced by women as a result of their participation in the study. Questions related to the initial approach of the research staff; level of anxiety at time of consent and after the interview; and reasons for and satisfaction with participation. The Spielberger (STAI-6) anxiety scale and open-field responses were included. Results: 35/103 case participants and 65/192 control participants returned the completed questionnaire. The majority participated for altruistic reasons. 20/35 (cases) and 58/65 (controls) stated they disagreed/ strongly disagreed that participation in the study increased their anxiety. 1 in 5 cases reported that participation in the study increased their anxiety; however this did not affect their satisfaction. Timing of interview did not affect anxiety scale responses. (F ¼1.2; p ¼0.37) 30/35 (cases) and 63/65 (controls) stated they agreed/strongly agreed that they were satisfied participating in the study. Conclusions: these findings suggest high levels of satisfaction amongst both case and control participants and no statistically significant increase in anxiety related to involvement in stillbirth research. 'Protecting' families may require further justification.

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Section: Qualitative Commentsmentioning

confidence: 63%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Anxiety and acceptability related to participation in stillbirth research

2015

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“…Narrative inquiry was considered the most appropriate qualitative approach to engage Samoan participants as they storied their lives through death and bereavement experiences. Engaging participants using this research method enabled them to explore meanings to such challenging life events (Ballard, 2009;Buckle, Dwyer, & Jackson, 2009;Ellis & Bochner, 2000). This approach is deemed to be particularly useful where there is a scarcity of information that considers the experiences and difficulties faced by a particular population (Hancock & Algozzine, 2006), which is the case for Samoan death and bereavement paradigms.…”

Section: Methodsmentioning

confidence: 99%

Fia Ola: Grief Recovery Following a Tsunami Disaster in Samoa

Seiuli

Nikora

Awekotuku

et al. 2016

Journal of Pacific Rim Psychology

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N atural disasters provide humanity with a setting in which to examine core dimensions of life. How people respond to and make sense of their experiences due to the ruptures of trauma and devastation remains vital in grief recovery. An earthquake of 8.3 magnitudes on October 29, 2009 triggered a galulolo (tsunami wave) that devastated parts of Samoa, American Samoa, and Tonga. This calamity provided an ideal setting for a case study examination of how those directly impacted recovered from the devastation. In this article, the experiences of one couple in the context of Samoan grieving processes becomes the key focus. Disaster and grieving literature is examined to inform and provide interpretation to their experiences. It is through such an examination that this article seeks to makes an important contribution to understanding the complexities of loss and culturally patterned responses of Samoan people, like this couple, to disaster recovery.Keywords: galulolo, tsunami disaster, fa'asamoa, trauma and grief recovery, indigenous psychology On September 29, 2009, an earthquake of magnitude of 8.3 on the Richter scale occurred offshore between Samoa and Tonga at around 6.50 am and lasted for almost 2 minutes (Potoi, Tautua & Fa'atauva'a-Vavatau, 2000). Though earthquakes occur regularly in this part of the world, this quake was the most fierce many people had ever experienced in their lives. Its tremors were felt not only in Samoa, but also in American Samoa, the northern parts of Tonga, Wallis and Futuna, and as far as Niue (Figure 1).Following the trembling, many locals proceeded with cleaning up the mess left behind by the massive quake, unbeknown to them that the shakes were only minor compared to the utter devastation that came next -a galulolo (tsunami wave). The Psychosocial Response Report (PSR) that was compiled by members of the Samoa recovery teams situated in Moto'otua reported that 'it only took 10-15 minutes after the earthquake had stopped for the wave to hit Samoa and Tutuila, at speeds of between 450-600 miles per hour, measuring between twenty to thirty feet in height at the worst hit areas' (Potoi et al., 2009, p. 2). In Samoa, the galulolo left 143 people dead in its wake, mostly women, children and the elderly. Five of the victims have never been recovered. Among the deceased were 10 tourists holidaying in Samoa, including some from New Zealand. Over 300 people sustained physical injuries and over 100 were admitted to the Samoa National Health Address for correspondence: Byron Malaela Sotiata Seiuli, School of Psychology, University of Waikato, Private Bag 3105, Hamilton, New Zealand. Email: byron@waikato.ac.nz Services (NHS) situated in Moto'otua, Apia, or satellite clinics in outlying regions. The PSR report also recorded that over 130 surgical procedures were undertaken to aid victims towards physical recovery, not counting those who chose not to report their injuries. The three main districts directly affected were Safata, Falealili, and Aleipata, representing between 37-40 villages, w...

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Final Arrangements Following Death: Maori Indigenous Decision Making and Tangi

Nikora

Masters‐Awatere

Awekotuku

2012

Community & Applied Soc Psy

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Death is a universal event. It will happen to all of us, yet how we respond to death is particular and influenced by our cultural worlds. This study offers an investigation of the idiographic, of how one woman responded to, and made arrangements to, mourn and bury her mother. Specifically, we explore how she and her whanau (family) under pressure of time and grief and in the absence of clear final wishes met to consider issues and make decisions about the situation they were confronted with. This case forms part of a much larger programme of research into Maori death rituals, change and adaption. Informing a scholarly audience unfamiliar with the Maori world requires a significant amount of contextual information. The case study is a powerful strategy to achieve this and one that draws readers into deep understanding (Willig, 2008). This case provides insight into the struggles of an indigenous fourth‐world people living within the heterogeneity of Aotearoa/New Zealand society; it demonstrates how values change across generations as people live their lives increasingly away from their ancestral homelands and how traditionally defined roles and responsibilities within the whanau (family) are challenged by members living away from each other. Copyright © 2012 John Wiley & Sons, Ltd.

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Qualitative bereavement research: incongruity between the perspectives of participants and research ethics boards

Cited by 84 publications

References 33 publications

Anxiety and acceptability related to participation in stillbirth research

Anxiety and acceptability related to participation in stillbirth research

Fia Ola: Grief Recovery Following a Tsunami Disaster in Samoa

Final Arrangements Following Death: Maori Indigenous Decision Making and Tangi

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