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Conducting research into end of life care

What to consider when undertaking research with vulnerable participants

What to consider when undertaking research with vulnerable participants

Illustration of bereaved person
Picture: Alamy

When researchers plan projects they are often filled with enthusiasm about the topic area and the new understanding they will gain from the data. Sometimes, this leads them to overlook the effect on participants of being asked to engage in data collection, especially when this is burdensome.

Definitions of what is burdensome may differ among participant groups. For example, patients attending weekly dialysis may be expected to have their weight and height measured by a nurse each time they visit. For frail, older people, however, attending a hospital clinic every week may be burdensome – they would have to negotiate transport and take time to attend the clinic for the sole purpose of data collection.

It is therefore important for researchers to consider how participation in research can be burdensome to some participant groups when planning their projects.

Effective recruitment of people to end of life research

Nurse Researcher presents two theme papers on the ethics of, and concerns arising from, the recruitment of people to end of life research.

The papers explore the evidence for effective recruitment of participants to end of life research and the conduct of research involving parents of children with life-limiting illness. Given the sensitive nature of this kind of research, understanding the participants’ perspective is important to ensure researchers can minimise burden, and facilitate recruitment and participation.

In the first paper, McCallum et al (2019) provide a review of research into recruiting bereaved people. Their review identifies that no single approach to recruiting bereaved participants is always more effective than others.

Overwhelmingly, people agreed to participate in the various studies and very few refused to. One conclusion of this review is that participants need to feel safe with researchers, and want them to be sensitive to their emotions and capacity to engage. The paper highlights the need for researchers working with this target group to be sensitive to participants’ needs and flexible in their approach to data gathering.

Parental participation not seen as burdensome

In the second paper, Hopper and Crane (2019) evaluate the burdens and benefits of parental participation in a phase one clinical trial for their children, who have life-limiting cancer, and a phenomenological study of parental experiences.

Hopper and Crane (2019) found that parents did not find participation burdensome and many found it personally meaningful. While study findings should be interpreted with caution due to the small sample size and limited demographic diversity among participants, they provide evidence to support the assertion that research into end of life is not burdensome to participants.

Clearly, a loved one's end of life and the subsequent bereavement is a deeply personal and complex time. Some people may perceive research conducted during this period to be intrusive or upsetting.

Researchers must be sensitive to the individual needs and preferences of potential participants, and avoid assumptions about what they would want. While some individuals may prefer not to participate in research at this time, others may find that this brings meaning to the events that are occurring.

Ensuring inclusiveness

Giving people a voice through participating in research can be cathartic (Alexander et al 2018), but it is important that researchers are clear that their role is not to provide support or therapy to participants (Dempsey et al 2016). It is the researchers’ role to ensure that any participants experiencing an extreme emotional response or who express that they are not coping are referred to appropriate professional support services in the local community.

It is critical that people experiencing bereavement, like many other vulnerable groups, are not excluded from participating in research.

Excluding participant groups based on the perceived complexity of their participation would mean their voices would not be heard in the discourse and a major perspective would be missing from the debate. Instead, inclusive research that is sensitive to the special needs of particular groups is vital to ensure broad representation.

These Nurse Researcher papers show that conducting research with those experiencing bereavement or a loved one’s life-limiting illness is not necessarily an undue burden. However, they also highlight that engaging with this group requires a degree of sensitivity and flexibility on the part of researchers to engage participants effectively. 

Care of the research team

A final consideration in undertaking research with vulnerable participants, such as those who are grieving or bereaved, is the need to ensure the safety and well-being of the research team.

While this consideration is often overlooked, the health and safety of those undertaking the data collection, transcription and analysis requires careful attention (Ramjan et al 2016).

All people have different personal experiences of grief and loss that have shaped their lives. Engaging with participants in the midst of their bereavement and working with sensitive data exploring these issues can have a profound effect on researchers and research staff. Debriefing and the provision of professional support, where required, is important to ensure that researcher health and well-being is promoted.

References


Elizabeth Halcomb is professor of primary health care nursing and head of postgraduate studies at the School of Nursing, University of Wollongong, NSW, Australia, and editor of Nurse Researcher

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