The experience of trial participation, treatment approaches and perceptions of change among participants with dissociative seizures within the CODES randomized controlled trial: A qualitative study

Objective: To explore how technologies are used and experienced in rehabilitation. Design: A qualitative study using a grounded theory approach within a randomized controlled trial investigating the effectiveness of tailored, affordable technologies to improve mobility and physical activity. Settings: Aged care and neurological rehabilitation wards with community follow-up. Participants: Twenty patients undergoing rehabilitation and randomized to the experimental arm of a trial (mean age 64 years (SD 23)) were recruited for interviews, plus 11 physiotherapists involved in technology prescription as part of the trial. Method: Two interviews per patient (one in hospital, one post-discharge) and four focus groups with physiotherapists were conducted. Transcribed data were coded and synthesized. Memo-writing and constant comparison methods guided data analysis. Results: A process of patient engagement with technology involving two stages: (1) initial patient engagement and (2) maintaining patient engagement was identified. Therapists used a series of steps and strategies to gain and maintain patient engagement. A positive first experience and continued input into patient programmes was needed. The level of patient engagement was not consistent across the duration of the trial, increasing or decreasing due to changes in the technologies prescribed or setting of use. Two conditions were key to optimizing patient engagement: sufficient support and perceived benefit from using technology. Conclusions: Patients can engage with technology during rehabilitation when prescription is tailored by a therapist. Perceiving benefit from using technology, in addition to receiving the right support to enable use appears to influence the level of patient engagement.

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Patients’Perceptions of Having a Good Life One Year after Arthritis Patient Education: A Qualitative Study Nested within a Randomized Controlled Trial

Nurse Media Journal of Nursing ◽

10.14710/nmjn.v7i1.15123 ◽

2017 ◽

Vol 7 (1) ◽

pp. 1 ◽

Cited By ~ 1

Author(s):

Kjersti Grønning ◽

Ola Bratås ◽

Aslak Steinsbekk

Keyword(s):

Randomized Controlled Trial ◽

Patient Education ◽

Qualitative Study ◽

Good Life ◽

Controlled Trial ◽

Well Being ◽

Education Intervention ◽

Treatment Regimes ◽

Randomized Controlled ◽

One Year

Background: Patients with inflammatory polyarthritis have various degrees of disease-related challenges such as joint pain, stiffness, fatigue, and physical limitations. Despite these challenges, patients strive for a good life using their personal resources, often taught in patient education. The effect of patient education in polyarthritis is well studied; however, long-term studies on what patients perceive as a good life after participating in arthritis patient education are scarce.Purpose: The aim of this study was to explore patients’ perceptions of having a good life one year after attending a nurse-led patient education intervention.Methods: This was a qualitative study nested within a randomized controlled trial (RCT) studying the effect of nurse-led patient education. Fifteen individual semi-structured interviews were conducted among those who attended the nurse-led patient education intervention. The intervention focused on the consequences of living with chronic inflammatory arthritis. The interviews explored how and whether the intervention had made any changes in the informants perceived health, well-being, arthritis, flares, and treatment regimes. The data were analyzed thematically using systematic text condensation.Results: The findings showed that the informants’ perceptions of having a good life were related to a stable disease with few symptoms, effective treatment regimes, discovering new opportunities and perspectives in life, as well as making choices that felt right. Creating a good life was something the informants had acquired knowledge about in the nurse-led patient education intervention, particularly in the part where they had discussed and shared experiences with each other on how they managed their arthritis in different ways and settings.Conclusion: Participating in a nurse-led patient education intervention in arthritis helped the informants to discover new opportunities and perspectives on creating a good life, especially through exchanging experiences with fellow patients.

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Randomized, Controlled Trial of an Easy-to-Read Informed Consent Statement for Clinical Trial Participation: A Study of the Eastern Cooperative Oncology Group

Journal of Clinical Oncology ◽

10.1200/jco.2003.07.022 ◽

2003 ◽

Vol 21 (5) ◽

pp. 836-842 ◽

Cited By ~ 133

Author(s):

Cathy A. Coyne ◽

Ronghui Xu ◽

Peter Raich ◽

Kathy Plomer ◽

Mark Dignan ◽

...

Keyword(s):

Clinical Trial ◽

Randomized Controlled Trial ◽

Informed Consent ◽

Controlled Trial ◽

Eastern Cooperative Oncology Group ◽

Trial Participation ◽

Patient Anxiety ◽

Randomized Controlled ◽

Patient Comprehension ◽

Study Results

Purpose: Studies have documented that the majority of consent documents for medical diagnosis and treatment are written at a reading level above that of the majority of the U.S. population. This study hypothesized that use of an easy-to-read consent statement, when compared with a standard consent statement, will result in higher patient comprehension of the clinical treatment protocol, lower patient anxiety, higher patient satisfaction, and higher patient accrual. Methods: A randomized controlled trial was conducted in 44 institutions that were members or affiliates of three cooperative oncology groups. Institutions were randomly assigned to administer either an easy-to-read consent statement or the standard consent statement to patients being recruited to participate in selected cancer treatment trials. Telephone interviews were conducted with a total of 207 patients to assess study outcomes. Results: Patients in the intervention arm demonstrated significantly lower consent anxiety and higher satisfaction compared with patients in the control arm. Patient comprehension and state anxiety were not affected by the intervention. Accrual rates into the parent studies also did not differ significantly between the two study groups. Conclusion: Clinical trial informed consent statements can be modified to be easier to read without omitting critical information. Patient anxiety and satisfaction can be affected by the consent document. The generalizability of these study results is limited by the characteristics of the patient sample. Ninety percent of the sample were white women, and the mean Rapid Estimate of Adult Literacy in Medicine score was approximately 64, indicating a literacy level at or above the ninth grade.

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