Rationale for participation in venous leg ulcer clinical research: Patient interview study

Weller, Carolina; Richards, Catelyn; Turnour, Louise; Team, Victoria

doi:10.1111/iwj.13438

Cited by 4 publications

(4 citation statements)

References 57 publications

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“…A recent study determined that patient centred care in the management of chronic wounds led to greater patient satisfaction, increased patient knowledge, enhanced patients’ adherence to VLU management, and improved quality of life ( Gethin et al, 2020 ). Further research into the role of clinicians in VLU patient centred care may be warranted; as would identifying suitable strategies to foster engagement of patients in research and policy development ( Weller et al, 2020 ).…”

Section: Discussionmentioning

confidence: 99%

Patient Explanation of Adherence and Non-Adherence to Venous Leg Ulcer Treatment: A Qualitative Study

et al. 2021

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The aim of this study was to understand which factors influence patients’ adherence to venous leg ulcer treatment recommendations in primary care. We adopted a qualitative study design, conducting phone interviews with 31 people with venous leg ulcers in Melbourne, Australia. We conducted 31 semi-structured phone interviews between October and December 2019 with patients with clinically diagnosed venous leg ulcers. Participants recruited to the Aspirin in Venous Leg Ulcer Randomized Control Trial and Cohort study were invited to participate in a qualitative study, which was nested under this trial. We applied the Theoretical Domains Framework to guide the data analysis. The following factors influenced patients’ adherence to venous leg ulcer treatment: understanding the management plan and rationale behind treatment (Knowledge Domain); compression-related body image issues (Social Influences); understanding consequences of not wearing compression (Beliefs about Consequences); feeling overwhelmed because it’s not getting better (Emotions); hot weather and discomfort when wearing compression (Environmental Context and Resources); cost of compression (Environmental Context and Resources); ability to wear compression (Beliefs about Capabilities); patience and persistence (Behavioral Regulation); and remembering self-care instructions (Memory, Attention and Decision Making). The Theoretical Domains Framework was useful for identifying factors that influence patients’ adherence to treatment recommendations for venous leg ulcers management. These factors may inform development of novel interventions to optimize shared decision making and self-care to improve healing outcomes. The findings from this article will be relevant to clinicians involved in management of patients with venous leg ulcers, as their support is crucial to patients’ treatment adherence. Consultation with patients about VLU treatment adherence is an opportunity for clinical practice to be targeted and collaborative. This process may inform guideline development.

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Section: Discussionmentioning

confidence: 99%

Patient Explanation of Adherence and Non-Adherence to Venous Leg Ulcer Treatment: A Qualitative Study

et al. 2021

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“…As was made clear by the CHWs in the current study, the purpose of research is not always clear, meaning more information is needed on the front-end of projects before individuals decide to participate. Also, exposing CHWs to other research approaches (e.g., Rationale for Research Participation Framework) could bolster their knowledge about why participants choose to participate in health research, including risk-benefit and reciprocity perspectives ( 30 ). There is considerable room for improvement from researchers and institutions, considering some barriers to engaging diverse populations are well documented and restated in the current study.…”

Section: Discussionmentioning

confidence: 99%

Community health worker insights on promoting research engagement with diverse populations

Killough

Madaras²,

Phillips³

et al. 2023

Front. Public Health

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Representation of diverse populations in health research enhances our ability to understand the factors that impact health, generalize results, implement findings, and promote social justice. The primary objective of the study was to understand the unique perspectives of frontline community health workers (CHWs) to identify actionable barriers and facilitators that may impact representation of diverse groups in health research. Focus groups with CHWs were conducted followed by thematic analysis. Results revealed five main themes: barriers/risks to research participation, facilitation of research, CHW roles, recommendations, and transparency. A novel finding was that some CHWs see themselves as both facilitators and gatekeepers. As facilitators, CHWs ensure their patient populations receive resources and benefit from being involved in research; as gatekeepers CHWs feel that they protect patient populations from experiencing further trauma, especially when engaging in research. Recognizing that in many communities there is a high reliance and trust with CHWs, can promote genuine and informed participation at all stages of research.

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“…In our research, we related potential recruitment facilitators to each component within INTACT-RS to enhance understanding of the perspective of (potential) study participants. In fact, there have been valuable previous efforts to incorporate participants’ perspectives about recruitment in a framework, for instance for “Rationale for research participation framework” by Weller et al [ 51 ]. While this specific framework example entails reasons for participation, e.g.…”

Section: Discussionmentioning

confidence: 99%

Intentional and actional components of engaged participation in public health research studies: qualitative synthesis of a recruitment and retention process into the theory-informed INTACT-RS framework

Lander

Heiberger

Sommoggy

et al. 2023

BMC Med Res Methodol

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Background Ensuring motivated and successful study participation is a key challenge in the design and conduct of health research studies. Previously, recruitment barriers and facilitators have been identified mainly from experience, and rarely based on theoretical approaches. We developed a framework of intentional and actional components of engaged participation in public health research studies (INTACT-RS), informed by psychological behavioral models. We aimed a) to identify precise indicators for each framework component and b) to better understand which components and decision processes are essential for study participants. Methods Within a multicenter research network, we applied various approaches to recruit parents of newborns, pediatricians, and midwives. All recruitment processes were documented from the perspective of both participants and researchers. We used different qualitative and quantitative data material, which we applied in a multistage process according to the basic principles of qualitative content analysis. Results INTACT-RS encompasses pre-intentional, intentional and actional phases with a total of n = 15 components covering all aspects of an individual’s involvement with a research study. During intention formation, an understanding of efforts and benefits, why participation is valuable beyond contributing to research, and how others perceive the study, were particularly important to (potential) participants. Subsequently (intentional phase), participants consider how and when participation is compatible with their own resources, ability and availability, and hence seek for close communication with, and flexibility and support from the research team. During and after (initial) participation (actional phase), participants’ assessment of whether expectations and interests have been met impact crucial further steps, especially the willingness to continue and to recommend participation to others. A strong topic-wise and or supportive participation interest as well as active, continuous exchange with the researchers appeared to be central determinants of study completion and data validity. Conclusions A theoretical framework is now available to plan and conduct recruitment of different target groups, which accounts for essential motivational and volitional decision-making processes. Based on empirically specified constructs, possible barriers can be addressed even before the initial recruitment process. Therefore, recommendations for scientific practice have been formulated.

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Rationale for participation in venous leg ulcer clinical research: Patient interview study

Cited by 4 publications

References 57 publications

Patient Explanation of Adherence and Non-Adherence to Venous Leg Ulcer Treatment: A Qualitative Study

Patient Explanation of Adherence and Non-Adherence to Venous Leg Ulcer Treatment: A Qualitative Study

Community health worker insights on promoting research engagement with diverse populations

Intentional and actional components of engaged participation in public health research studies: qualitative synthesis of a recruitment and retention process into the theory-informed INTACT-RS framework

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