Guidelines for conducting ethical bereavement research

Parkes, Colin Murray

doi:10.1080/07481189508252723

Cited by 133 publications

(127 citation statements)

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“…8,17,18 This method allows potential participants to consider the research before being approached directly by an investigator. In the CPCCRN bereavement studies, parents were initially contacted by mailed letter.…”

Section: Privacymentioning

confidence: 99%

“…Respect for personal information requires that confidentiality be maintained. 7,8,14 Confidentiality in research refers to agreements between participants and researchers about how identifiable data will be managed and to whom it will be disclosed. 15 Special precautions are required to maintain confidentiality in multicenter research because data are usually transmitted to and stored at a Data Coordinating Center (DCC).…”

Section: Confidentialitymentioning

confidence: 99%

“…2,3,[6][7][8] Vulnerability in research is a condition in which individuals have difficulty providing voluntary informed consent due to limitations in decision-making capacity or situational factors, or in which they are at high risk of exploitation. 15 The bereaved may be vulnerable because of the emotional pain associated with loss and the sensitive nature of the data to be collected.…”

Section: Voluntarinessmentioning

confidence: 99%

“…Limitations in article length often preclude detailed explanations about the selection of research methods. Reviews have been published that discuss ethical and logistical issues in conducting research with the dying and bereaved [2][3][4][5][6][7][8] ; however, most bereavement reviews focus on research participants who have lost adult family members and who were recruited from single sites. Methodological considerations specific to multicenter parental bereavement research have not been adequately explored.…”

Section: Introductionmentioning

confidence: 99%

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Ethical and Logistical Considerations of Multicenter Parental Bereavement Research

Meert

Eggly

Dean

et al. 2008

Journal of Palliative Medicine

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Background-Multicenter research has the potential to recruit participants with diverse racial, ethnic, and geographic backgrounds and is essential for understanding heterogeneity in bereavement. The National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) is a multicenter network charged with conducting research on the pathophysiology and management of critical illness in childhood. Among its research activities, the CPCCRN has undertaken research in parental bereavement because most childhood deaths in the United States occur in hospitals, primarily in critical care units.

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Section: Privacymentioning

confidence: 99%

Section: Confidentialitymentioning

confidence: 99%

Section: Voluntarinessmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Ethical and Logistical Considerations of Multicenter Parental Bereavement Research

Meert

Eggly

Dean

et al. 2008

Journal of Palliative Medicine

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“…Despite this concern, there is growing evidence that bereaved individuals find participating in research a useful experience with the potential to benefit others in similar situations (Beck & Konnert, 2007; Cook & Bosley, 1995; Koffman et al, 2012), and guidelines have been developed to support this process (e.g. Parkes, 1995). …”

Section: Introductionmentioning

confidence: 99%

Conducting ethical internet-based research with vulnerable populations: a qualitative study of bereaved participants’ experiences of online questionnaires

Smith

Thew

Graham

2018

European Journal of Psychotraumatology

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Background: Bereavement can be considered a potentially traumatic experience, and concerns have been raised about conducting grief research responsibly online. Objective: Given that online research introduces new methodological opportunities and challenges, we aimed to develop a greater understanding of how bereaved individuals experience participation in online research. Method: One day after participation in an online grief study, 876 participants, bereaved on average for 40 months, received a ‘check-in’ email to support well-being and offer further contact if needed. Although not explicitly asked to respond if no help was needed, 300 participants sent email replies, with only six requesting support. These responses were analysed qualitatively using content analysis. Results: Results suggested that participants found it acceptable to be asked about their grief and while difficult emotions were frequently described in response to the questionnaires, these reactions were temporary. A range of positive reactions was also reported, including new realizations arising from completing the research and changes in thinking related to grief. Participants also wrote about their appreciation for the study and how it was carried out, as well as a desire to contribute more to the study and to help others in a similar position. Conclusions: We suggest that the use of the check-in email to support well-being following study completion, along with advice on preparing to take part, contributed to positive experiences of participation and we recommend these strategies for future studies. These findings could allay clinical concerns about conducting online research with vulnerable populations, as well as raising questions about the possible therapeutic impact of measurement.

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Interventions to support children through bereavement

Brennan

Williams

2006

Cochrane Database of Systematic Reviews

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Guidelines for conducting ethical bereavement research

Cited by 133 publications

References 0 publications

Ethical and Logistical Considerations of Multicenter Parental Bereavement Research

Ethical and Logistical Considerations of Multicenter Parental Bereavement Research

Conducting ethical internet-based research with vulnerable populations: a qualitative study of bereaved participants’ experiences of online questionnaires

Interventions to support children through bereavement

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