Dying persons’ perspectives on, or experiences of, participating in research: An integrative review

Abstract

Background:Conducting research with dying persons can be controversial and challenging due to concerns for the vulnerability of the dying and the potential burden on those who participate with the possibility of little benefit.Aim:To conduct an integrative review to answer the question ‘What are dying persons’ perspectives or experiences of participating in research?Design:A structured integrative review of the empirical literature was undertaken.Data sources:Cumulative Index Nursing and Allied Health Complete, PsycINFO, MEDLINE, Informit and Embase databases were searched for the empirical literature published since inception of the databases until February 2017.Results:From 2369 references, 10 papers were included in the review. Six were qualitative studies, and the remaining four were quantitative. Analysis revealed four themes: value of research, desire to help, expression of self and participation preferences. Dying persons value research participation, regarding their contribution as important, particularly if it provides an opportunity to help others. Participants perceived that the potential benefits of research can and should be measured in ways other than life prolongation or cure. Willingness to participate is influenced by study type or feature and degree of inconvenience.Conclusion:Understanding dying persons’ perspectives of research participation will enhance future care of dying persons. It is essential that researchers do not exclude dying persons from clinically relevant research due to their prognosis, fear or burden or perceived vulnerability. The dying should be afforded the opportunity to participate in research with the knowledge it may contribute to science and understanding and improve the care and treatment of others.

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member

“…Participants' vulnerability must always be evaluated when planning and performing research (Moule et al, 2017;Ruyter et al, 2014). Cancer patients in the palliative phase and their families are considered to be a vulnerable group (Chen et al, 2014;Hanson et al, 2014;Sivell et al, 2015); their time is valuable, participation in research is burdensome, and the patients themselves will not benefit from the knowledge which is produced (Bloomer, Hutchinson, Brooks, & Botti, 2018;Ruyter et al, 2014;Sivell et al, 2015). Studies have shown that using words such as death and the palliative phase in the information letter can be perceived as burdensome (Gjertsen, 2009), and can unexpectedly reveal diagnoses and prognoses (Hickman, Cartwright, Nelson, & Knafl, 2012); therefore the terminology 'people living with cancer' was used in the information letter.…”

“…Studies have shown that using words such as death and the palliative phase in the information letter can be perceived as burdensome (Gjertsen, 2009), and can unexpectedly reveal diagnoses and prognoses (Hickman, Cartwright, Nelson, & Knafl, 2012); therefore the terminology 'people living with cancer' was used in the information letter. It has also been claimed that not researching vulnerable groups is unethical, since the objective of research is to obtain knowledge and promote quality in the health care service (Bloomer et al, 2018;Sivell et al, 2015). In order to reduce the risk of harm, the initial contact was made by health care personnel who knew the families and were able to evaluate the families' vulnerability (Hickman et al, 2012).…”

“…The families were provided with information about this in the information letter and at the end of the interview. Bloomer et al (2018) show in a summary article that dying patients value participation in research and consider their contribution to be important, particularly if it can help others. Studies also claimed that participation in research can have unintentional therapeutic effects (Bloomer et al, 2018;Donalek, 2009;Sivell et al, 2015).…”

“…Bloomer et al (2018) show in a summary article that dying patients value participation in research and consider their contribution to be important, particularly if it can help others. Studies also claimed that participation in research can have unintentional therapeutic effects (Bloomer et al, 2018;Donalek, 2009;Sivell et al, 2015). Many of the families in the study mentioned after the interview that it had been good to participate, with no one expressing that it had been uncomfortable.…”

Views of Patients With Advanced Disease and Their Relatives on Participation in Palliative Care Research

“…With the respect to their autonomy, patients should be given the choice to decide about their research participation by themselves (2,3). Denying patients and their family carers of this choice is deemed as unethical (1) and paternalistic (4) and can jeopardize the further development of evidence based palliative care.…”