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Carers' Motivations for, and Experiences of, Participating in Suicide Research.

ABSTRACT: (1) Background: First-hand accounts of lived experience of suicide remain rare in the research literature. Increasing interest in the lived experience of suicide is resulting in more opportunities for people to participate in research based on their personal experience. How individuals choose to participate in research, and their experience of doing so, are important considerations in the ethical conduct of research. (2) Methods: To understand the experience of providing care for someone who has previously attempted suicide, a cross-sectional online community survey was conducted. This survey concluded with questions regarding motivation to participate and the experience of doing so. Of the 758 individuals who participated in the survey, 545 provided open-ended text responses to questions regarding motivation and 523 did so for questions regarding the experience of participating. It is these responses that are the focus of this paper. Data were analysed thematically. (3) Results: Motivations to participate were expressed as primarily altruistic in nature, with a future focus on improving the experience of the person who had attempted suicide alongside carers to ease distress. The experience of participating was difficult yet manageable, for all but a few participants. (4) Conclusions: With the increasing interest in first-hand accounts of suicide, how individuals experience participation in research is an important focus that requires further attention.

SUBMITTER: Maple M

PROVIDER: S-EPMC7084311 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Carers' Motivations for, and Experiences of, Participating in Suicide Research.

Maple Myfanwy M Wayland Sarah S Sanford Rebecca R Spillane Ailbhe A Coker Sarah S

International journal of environmental research and public health 20200306 5

(1) Background: First-hand accounts of lived experience of suicide remain rare in the research literature. Increasing interest in the lived experience of suicide is resulting in more opportunities for people to participate in research based on their personal experience. How individuals choose to participate in research, and their experience of doing so, are important considerations in the ethical conduct of research. (2) Methods: To understand the experience of providing care for someone who has ...[more]

PMID: 32155819

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Project description:ObjectivesTo characterise Portuguese cancer-related patient organisations and analyse their views, motivations and experiences on patient involvement in cancer research.DesignA multistakeholder group, comprising patient representatives and researchers, codesigned a questionnaire after a literature review, online sessions and collaborative mind maps. In May 2021, a survey was conducted among representatives of Portuguese cancer-related patient organisations, focusing on four dimensions: experience in cancer research; perception of its outcomes; motivations and expectations on patient involvement in research; and organisation characteristics.ParticipantsTwenty-seven representatives from Portuguese cancer-related patient organisations responded to the questionnaire, corresponding to a 64% response rate.ResultsAmong the surveyed organisations, 26% have participated in clinical studies. Their involvement occurred in few stages of the research process and, mostly, with low levels of engagement. They showed 'great interest' in participating in most research steps, although this is not reflected in a high perception of influence over these same steps. More than half claimed to have contributed to the increase in patient recruitment and to a better understanding of informed consent by patients involved. Ensuring that research results are more aligned with the true needs of patients is the greatest motivation. Also, our results suggest that the organisation's number of employees and its integration into a European/International network play a relevant role in patient involvement in research.ConclusionsThis study provides the first in-depth characterisation of Portuguese cancer-related patient organisations and their views, motivations and experiences on patient involvement in cancer research. Most importantly, this study revealed that most of these organisations show great interest in being involved in different R&D stages to ensure that research results are aligned with patients' needs. Their motivation should be turned into greater and more meaningful involvement in practice, so that the cancer community can benefit from the outcomes of truly patient-centred research.

Dataset Information

Carers' Motivations for, and Experiences of, Participating in Suicide Research.

Publications

Carers' Motivations for, and Experiences of, Participating in Suicide Research.

Similar Datasets

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