Afficher la couverture 'Dying persons' perspectives on, or experiences of, participating in research : an integrative review | BLOOMER, Melissa J.' en grand format
/5

0 avis

Dying persons' perspectives on, or experiences of, participating in research : an integrative review

Article

BLOOMER, Melissa J. | HUTCHINSON, Alison M. | BROOKS, Laura | BOTTI, Mari

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.

http://dx.doi.org/10.1177/0269216317744503

Voir la revue «PALLIATIVE MEDICINE, 32»

Autres numéros de la revue «PALLIATIVE MEDICINE»

Consulter en ligne

Suggestions

Du même auteur

Dying persons' perspectives on, or experience...

Article indépendant | BLOOMER, Melissa J. | PALLIATIVE MEDICINE | n°4 | vol.32

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. A...

'It's not what they were expecting' : a syste...

Article indépendant | BLOOMER, Melissa J. | PALLIATIVE MEDICINE | n°5 | vol.34

BACKGROUND: Volunteers make a major contribution to palliative care but little is known specifically about hospital palliative care volunteers. AIM: The aim of this study was to understand the role and experience of hospital palli...

What mediates end-of-life care choices?

Article | BLOOMER, Melissa J. | The Lancet. Public health | n°3 | vol.6

In The Lancet Public Health, Joanna Davies and colleagues examine the relationship between socioeconomic position and receipt of hospital-based care towards the end of life for older people, showing that lower wealth is associated...

De la même série

Improving family grief outcomes : a scoping r...

Article | HØEG, Beverley Lim | PALLIATIVE MEDICINE | n°3 | vol.38

BACKGROUND: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, includ...

Death education interventions for people with...

Article | WANG, Tong | PALLIATIVE MEDICINE | n°4 | vol.38

BACKGROUND: People with life-threatening diseases and their family caregivers confront psychosocial and spiritual issues caused by the persons' impending death. Reviews of death education interventions in the context of life-threa...

Research methods in palliative care

Article | DELIENS, Luc | PALLIATIVE MEDICINE | n°6 | vol.38

Research in palliative care is challenging and complex and it uses a range of research designs and research methods, derived from many different scientific disciplines: from medicine and nursing over health sciences, communication...

What are we planning, exactly? The perspectiv...

Article | BRUUN, Andrea | PALLIATIVE MEDICINE | n°6 | vol.38

BACKGROUND: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. AIM: To explore the p...

Face and content validity, acceptability, fea...

Article | NAMISANGO, Eve | PALLIATIVE MEDICINE | n°7 | vol.37

Background: The Children’s Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matter...

Chargement des enrichissements...