Asking next-of-kin of recently deceased cancer patients to take part in research: 11 of 20 surveyed found it a positive experience
- 1School of Nursing, Vanderbilt University, Nashville, Tennessee, USA
- 2School of Nursing, Saint Louis University, St. Louis, Missouri, USA
- Correspondence to: Terrah L Foster
School of Nursing, Vanderbilt University, 461 21st Avenue, South 418 Godchaux hall, Nashville, TN 37240, USA;
Commentary on: Koffman J, Higginson IJ, Hall S, et al. Bereaved relatives’ views about participating in cancer research. Palliat Med 2012;26:379–83.
Implications for practice and research
These results will aid the development of protocols for screening bereaved individuals who are eligible for study participation.
These results provide insight into bereaved participants’ preferences for data collection methods (eg, face-to-face, phone and self-completion postal surveys).
The needs of non-cancer-related deaths and paediatric populations (eg, bereaved child participants; childhood deaths) need consideration in future studies.
In 2008, the Department of Health in England called for a better understanding of bereaved relatives’ views of end-of-life care. However, ethical concerns exist regarding whether the vulnerable population of bereaved relatives should be involved as research study participants. With little research evidence addressing this ethical debate, Koffman and colleagues explored the appropriateness and acceptability of an end-of-life-care survey instrument to be used with recently bereaved relatives, and bereaved relatives’ perceptions of study participation.
This qualitative cross-sectional two-phase study included relatives (n=20) of adult cancer patients who had received palliative care services and died within 3–8 months. Participants’ median age was 64 years. The majority were female (n=10, 53%), bereaved spouses (n=11, 58%), and involved in caring for the ill patient (n=18, 95%). Data collection tools included semi-structured interviews and self-completed postal surveys. In phase 1, face-to-face cognitive interviews explored participants’ (n=9) views of survey questions and study participation. In phase 2, 11 participants completed a postal survey (identical to the interview in phase 1), and five of those agreed to a follow-up phone interview regarding their views of completing a mortality follow-up questionnaire. Content analysis identified emerging themes from the transcribed interviews and free text comments from the postal survey. Two researchers independently coded a subset of the interviews and discussed coding discrepancies until a consensus was reached.
Bereaved relatives perceived study participation was helpful although sometimes distressing, and altruistic and therapeutic. Eleven relatives thought study participation was helpful; of these participants, six did not report any distress, while five stated it was both helpful and distressing. Nine participants did not find the survey helpful; five of those reported it was also distressing. Four participants perceived a sense of altruism by contributing to the study, believing that they could help other bereaved individuals in the future. Eight participants reported other direct benefits, including thinking more logically about the death and organising memories.
Koffman and colleagues' study advances our current knowledge regarding the involvement of bereaved individuals in cancer research. Although some participants reported distressing effects from cancer research, the majority felt it was a helpful and positive experience, similar to previous reports from bereaved individuals.1 ,2
The study was well designed with the use of qualitative methods to successfully accomplish exploratory study aims. Clear descriptions of procedures used for enrolment, data collection and analysis increased auditability. Clinician screening of, and opt out opportunities for eligible participants increased protection for potentially distressed individuals. The use of two coders who independently analysed qualitative data increased the credibility of results.
Excluding non-cancer-related deaths limited transferability, although the study provides insight into a previously unexplored area. The study could have been enhanced by including a justification for the sample size and focus on cancer-related deaths as well as more information on the duration of palliative care services provided before death. More details about clinicians’ criteria for screening eligible participants and clarification on how participant interviews were recorded, transcribed and evaluated for accuracy would also have enhanced the paper. However, the results provide insight into the potential benefits and consequences of involving bereaved relatives in research.
Engaging bereaved individuals in research requires protection strategies for vulnerable human subjects, such as clinician screening and opt out opportunities.3 ,4 Researchers must carefully select and train study staff to maintain research protocols and be attuned to individual participant needs (eg, flexible scheduling, breaks during data collection, continuous informed consent). Even in the midst of potential distress, many bereaved individuals can positively benefit from participating in research and sharing their stories. More work is needed to better inform researchers how to best engage bereaved individuals in research while providing them the upmost protection and care throughout the process.