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Title: Exploration of motivation to participate in a study of cancer-related cognitive impairment among patients with newly diagnosed aggressive lymphoma: a qualitative sub-study.
Austin Authors: Gates, Priscilla ;Dhillon, Haryana;Gough, Karla;Wilson, Carlene J ;Hawkes, Eliza A ;Scudder, Lindsay;Cushion, Tania;Krishnasamy, Meinir
Affiliation: Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia
Clinical Haematology
Faculty of Science, School of Psychology, Centre for Medical Psychology & Evidence-Based Decision-Making, The University of Sydney, Sydney, NSW, Australia
Department of Nursing, Faculty of Medicine, The University of Melbourne, Dentistry & Health Sciences, Melbourne, VIC, Australia
Research and Education Nursing, Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia
Academic Nursing Unit, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia
Cancer Nursing Research Group, Department of Nursing/Centre for Cancer Research, School of Health Sciences, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, The University of Melbourne, Melbourne, VIC, Australia
Faculty of Medicine, The University of Melbourne, Dentistry & Health Sciences, Melbourne, VIC, Australia
School of Psychology and Public Health, LaTrobe University, Melbourne, VIC, Australia
Olivia Newton-John Cancer Wellness and Research Centre
Issue Date: 2021 2021-09-08
Publication information: Supportive Care in Cancer 2022; 30(2): 1331-1339
Abstract: Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This qualitative sub-study was undertaken as part of a larger prospective longitudinal study in which recruitment and retention were very high. The aim was to gain an understanding of participants reasons for ongoing participation, at a time of heightened stress related to a new diagnosis of aggressive lymphoma and the rapid commencement of treatment. This qualitative descriptive sub-study included semi-structured interviews with twenty-seven participants. Interviews were recorded and transcribed, and a thematic descriptive approach was used to analyse the data. Twenty-seven interviews were completed. Four themes described participants' motivation to consent and continue with the study. These included ease of participation, personal values, self-help and valued additional support. Participants understood the requirements of the study, and data collection occurring during hospital visits was perceived to be convenient. Interviewees confirmed that the study fulfilled desire to "help others". Although testing was intense and challenging, it provided feedback on current functioning and was described by some as a "welcome distraction" and enjoyable. Finally, interaction with the study nurse was perceived as an additional beneficial oversight and support. Achieving sustained participation in a prospective study with patients undergoing treatment is facilitated where the logistical demands of data collection are minimised; a clinician from the service is included; the tasks are seen as inherently interesting; and care is taken to provide empathic support throughout. Australian New Zealand Clinical Trials Registry ACTRN12619001649101.
DOI: 10.1007/s00520-021-06527-9
ORCID: 0000-0002-7978-5802
Journal: Supportive Care in Cancer
PubMed URL: 34495384
Type: Journal Article
Subjects: Aggressive lymphoma
Cancer-related cognitive impairment
Appears in Collections:Journal articles

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