Lessons from the Literature

2021; Volume 22, No 12, December

Under My Microscope

IAHPC Research Advisor Dr. Tania Pastrana selects one article from recently published medical literature and describes why it is worthwhile.

Dr. Tania Pastrana. Used with permission.

By Dr. Tania Pastrana
IAHPC Research Advisor

Patient and Physician Perspectives on Engaging in Palliative and Healthcare Trials: A qualitative descriptive study

Cardenas V, Rahman A, Giulioni J, Coulourides Kogan A, Enguidanos S. (2021). BMC Palliat Care 2021; 20(1): 158. DOI: 10.1186/s12904-021-00856-6

To finish the year, I selected a different kind of article: one about doing research. The involvement of participants—whether they are professionals or patients/proxies—is sometimes a major challenge for those doing palliative care research.

In this qualitative study conducted by Valeria Cardenas et al., patients, caregivers, proxies, and physicians were interviewed with the aim of identifying challenges in engaging them in research, as well as identifying their preferred strategies and methods for research recruitment.

They identified a series of common themes. Time constraints and concerns with randomization were mentioned by all groups. Barriers specific to patient participation included privacy concerns, a disconnect with the research institution, being in a poor state of health, and negative perceptions about research generally.

Participants recommended some strategies to improve recruitment and retention. Recruitment done in person or at the health care provider’s office were preferred over phone calls. Providing a clear explanation of the study was important to nonmedical participants.

Improving engagement is fundamental in order to conduct solid studies that provide better evidence.

Link to article

Background: Researchers are encountering increasing challenges in recruiting participants for palliative and healthcare research. This paper aims to understand challenges to and methods for engaging physicians and seriously ill patients and their caregivers in research studies.

Methods: Between October 2019 and July 2020, we conducted qualitative interviews with 25 patients, proxies, and caregivers participants who were eligible for a randomized controlled trial of home-based palliative care and 31 physicians from participating accountable care organizations. Using thematic analysis, we analyzed participants’ responses to identify concepts and key ideas within the text. From these initial concepts, core themes around barriers to research and preferred research recruitment approaches were generated.

Results: Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included in-person recruitment, recruitment at healthcare providers’ offices, recruitment via mail, additional study information, and frequent calls. Physician recommendations were related to placement of flyers at clinics, financial incentives, and formal events.

Conclusions: Findings demonstrated that although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a consistent barrier to research involvement.

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Media Watch: Dementia

The articles below are selected from Barry R. Ashpole’s weekly report, Media Watch.

End-of-Life and Palliative Care for People with Dementia Framework

Government of Western Australia (Department of Health) | Online – 12 October 2021 – The Framework offers health service providers and administrators a guide to planning, developing and implementing local processes and solutions to address the needs of people with dementia. It also provides guidance and support to individuals and their families so people with dementia are as involved as possible in the advance care planning process to ensure person centred end-of-life (EoL) care. It outlines principles to ensure that people with dementia have timely access to appropriate EoL and PC services.
Download the report

Quality indicators for dementia and older people nearing the end of life: A systematic review — The authors provide a shortlist of 71 quality indicators (QIs) for older people and people with dementia nearing the end of life that are robust, which can be applicable across care settings and measurable using routinely collected electronic datasets.

Integration of a palliative approach in the care of older adults with dementia in primary care settings: A scoping review—The authors operationalize a definition of a palliative approach in the context of dementia and used this definition to scope the existing literature in this area.

‘A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections’ — The interactive decision aid presented covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) health care, tests and medication.

Media Watch monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. View current and back issues here.

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