Interest in Research Participation among Hospice Patients, Caregivers, and Ambulatory Senior Citizens: Practical Barriers or Ethical Contraints?

Abstract

This study suggests that many hospice patients are interested in research participation and are able to articulate benefits and barriers, which supports the inclusion of this population in research.

What do palliative care patients and their relatives think about research in palliative care?—a systematic review

“…Some studies were conducted purely in patients with cancer, whereas others included those with advanced non-malignant disease. Two of the carer studies involved people who were still actively caring for their relative [4,6], whereas one involved bereaved carers [7]. No studies used the same questionnaires or questioning format.…”

“…Three studies used self-administered questionnaires, one of which was designed through focus groups and interviews [4]. The methods used for the design of the other two questionnaires were not described [6,7]. One of the qualitative studies was in the form of a structured interview [8] and the other a semi-structured interview with detailed analysis performed by several researchers [3].…”

“…How trial-related factors influenced patients' and their caregivers' willingness to participate in research has also been described in a questionnaire study from the USA [6]. Forty-six percent of hospice patients and 60% of caregivers were interested in interview or survey research with 45% and 57%, respectively, expressing an interest in therapeutic research.…”

“…Forty-six percent of hospice patients and 60% of caregivers were interested in interview or survey research with 45% and 57%, respectively, expressing an interest in therapeutic research. Younger patients were more favourably disposed towards both survey and therapeutic research participation than those over the age of 75 [6].…”

“…These patients identified the benefit of making a useful contribution despite their terminal illness [3], suggesting a potential psychological benefit of participation. Hospice patients in the USA were more likely than ambulatory senior citizens to identify the potential to improve their symptoms, the opportunity to have a sense of purpose and the potential to be followed more closely by their doctor or nurse as potential benefits of research participation [6]. This suggests that personal gain was an important consideration in this population.…”