Cancer-related psychosocial research : what are the perspectives of cancer care centre users on participation?

Hepworth, Julie, Robertson, Ann R.R., Jhunjhunwala, Anita, Jarvis, Glyn C., & McVittie, Chris (2011) Cancer-related psychosocial research : what are the perspectives of cancer care centre users on participation? Supportive Care In Cancer, 19(7), pp. 1029-1035.

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Abstract

Purpose

To explore the perspectives of cancer care centre users on participation in psychosocial research to inform research design and ethics.

Methods

The study is based on a qualitative research design. Fourteen semistructured interviews were carried in people diagnosed with cancer and carers. The interview included four main questions about practical barriers to participation, types of research design, motivating factors and the conduct of research in a cancer care support setting. The data were analysed using qualitative content analysis.

Results

Interviewees demonstrated a willingness to participate in psychosocial research within certain circumstances. There were no practical barriers identified, although they considered payment for research-related travel important. The most acceptable research design was the face-to-face interview and the least preferred was the randomised control trial. The factors that motivated participation were altruism, valuing research, and making a contribution to the centre. Interviewees supported the conduct of research in cancer care support centres conditional upon delaying recruitment during the initial months of users’ visits and its need to be discreet to avoid deterring visitors from accessing the centre.

Conclusions

The study concludes that the personal interaction between participants and researchers is the most important feature of decision-making by patients/carers to join studies. Taking into account the perspectives of people affected by cancer during the early stages of research design may enhance recruitment and retention and can contribute to the development of research protocols and ethics.

Impact and interest:

3 citations in Scopus
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4 citations in Web of Science®

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ID Code: 59361
Item Type: Journal Article
Refereed: Yes
Keywords: Research participation, Ethics, Recruitment, Psychosocial, Cancer and Oncology
DOI: 10.1007/s00520-010-0931-9
ISSN: 1433-7339
Subjects: Australian and New Zealand Standard Research Classification > MEDICAL AND HEALTH SCIENCES (110000) > PUBLIC HEALTH AND HEALTH SERVICES (111700)
Australian and New Zealand Standard Research Classification > PSYCHOLOGY AND COGNITIVE SCIENCES (170000) > PSYCHOLOGY (170100) > Health Clinical and Counselling Psychology (170106)
Divisions: Current > QUT Faculties and Divisions > Faculty of Health
Current > Schools > School of Public Health & Social Work
Deposited On: 01 May 2013 04:55
Last Modified: 15 Jul 2013 03:17

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