scholarly journals Non-disabled Space Invaders! A Study Critically Exploring the Scholarly Reporting of Research Attributes for Persons With and Without Disability

2020 ◽  
Vol 13 (2) ◽  
pp. 304-321
Author(s):  
Damian Mellifont
Keyword(s):  
Lived Experience ◽  
Thematic Analysis ◽  
Knowledge Production ◽  
Research Process ◽  
Database Search ◽  
Median Score ◽  
Significant Difference ◽  
Disability Group ◽  
Scopus Database ◽  
Purposive Sample

Social justice requires that the “nothing about us without us” disability inclusion mantra not be rejected or watered down in knowledge production activities. Appreciating the need for a greater representation of disability in these activities, this investigative study aims to (a) determine if there is a statistically significant difference in the median research attribute reporting scores between articles whose content refers to the term “researchers with lived experience” and articles whose content refers to “non-disabled researchers,” and (b) to critically discuss how the scholarly literature reports on the attributes of researchers with and without disability. Enabling this exploration, this study has applied the Mann-Whitney U test and thematic analysis to a purposive sample of 20 articles that were retrieved from a Scopus database search. Findings reveal that the median score of reported research attributes was statistically significantly higher in the group of articles whose content referred to the term researchers with lived experience than in the articles that referred to non-disabled researchers. Results also highlight attributes of empathy, ability, rigor and activism that are reportedly shared across the two groups of articles. Crucially, attention is given to a theme reported as unique to the researchers with disability group. This is the attribute of having firsthand knowledge of disability (i.e., lived experience). The study concludes by recognising that lived experience, when incorporated throughout the research process, can help to redress deficiencies that might otherwise be present.

scholarly journals Co-constructing feminist research: Ensuring meaningful participation while researching the experiences of criminalised women

2020 ◽  
Vol 13 (2) ◽  
pp. 205979912092526
Author(s):  
Nicola A Harding
Keyword(s):  
Lived Experience ◽  
Knowledge Production ◽  
Process Management ◽  
Research Process ◽  
Social Contexts ◽  
Feminist Methodology ◽  
North West ◽  
The North ◽  
Meaningful Participation ◽  
Transformative Action

Traditional forms of knowledge production can serve to reproduce the power imbalances present within the social contexts that research and knowledge production occur. With the interests of the discipline of criminology so closely entwined with the criminal justice system, it is no surprise that crime, punishment, rehabilitation and desistance have not been adequately examined from a gendered perspective. This article examines a participatory action research process conducted with criminalised women subject to community punishment and probation supervision in the North West of England. By examining the feminist methodology within which this research is framed, discussions about meaningful collaboration offer insights into the potential for creativity in research to become transformative. Using a range of creative qualitative research methods, specifically map making, photovoice and creative writing, this research attempts to understand the experience of criminalised women. Charting the way in which this research prioritises the collaboration of criminalised women at all stages of the research process, this article proposes that ‘meaningful’ participation is about more than process management. It is only by moving beyond typologies of participation, towards an understanding of how participation in the created research space responds to the groups wider oppression, in this case by overcoming trauma or demonstrating reform, that collaboration with holders of lived experience can uncover subjugated knowledge and facilitate transformative action.

scholarly journals Shifting neurotypical prevalence in knowledge production about the mentally diverse: A qualitative study exploring factors potentially influencing a greater presence of lived experience-led research

2019 ◽  
Vol 8 (3) ◽  
pp. 66-94
Author(s):  
Damian Mellifont
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Thematic Analysis ◽  
Knowledge Production ◽  
Exploratory Study ◽  
Social Inclusion ◽  
Future Research ◽  
Evidence Based ◽  
Inclusion Criteria ◽  
Factors Influencing

Research which is led by mentally diverse persons offers a variety of benefits.  Crucially, this research holds potential to target wide-ranging social inclusion issues.  Recognizing that these studies cannot lay claim to be commonplace, the aim of this investigation is to inform and improve policy supportive of lived experience-led studies by critically investigating evidence-based factors influencing a greater presence of this genuinely inclusive style of research.  Following purposive sampling, thematic analysis was applied to twelve articles meeting with inclusion criteria and retrieved from Scopus, Medline, PsycINFO and ProQuest databases.  This investigation reveals three key findings.  First, this exploratory study identifies factors supporting and resisting lived experience-led research across micro, meso and macro levels.  Second, investment in future research is needed to identify evidence-based measures with capacity to redress factors constraining opportunities for mentally diverse persons to develop research careers and to potentially lead the way in reforming mental health and other services.  Finally, any assertions of neurodiverse researchers as necessarily being lacking in professional qualifications or reliant upon the assistance of neurotypical colleagues should be critically questioned.  

A study of practice based design research models from knowledge integration perspective

2019 ◽  
Vol 1 (1) ◽  
Author(s):  
Honghai LI ◽  
Jun CAI
Keyword(s):  
Knowledge Production ◽  
Theoretical Basis ◽  
Knowledge Integration ◽  
Design Research ◽  
Research Process ◽  
Two Dimensions ◽  
Design Knowledge ◽  
Research Projects ◽  
Proposed Model ◽  
Design Innovation

The transformation of China's design innovation industry has highlighted the importance of design research. The design research process in practice can be regarded as the process of knowledge production. The design 3.0 mode based on knowledge production MODE2 has been shown in the Chinese design innovation industry. On this cognition, this paper establishes a map with two dimensions of how knowledge integration occurs in practice based design research, which are the design knowledge transfer and contextual transformation of design knowledge. We use this map to carry out the analysis of design research cases. Through the analysis, we define four typical practice based design research models from the viewpoint of knowledge integration. This method and the proposed model can provide a theoretical basis and a path for better management design research projects.

Valuing the voice of lived experience of eating disorders in the research process: Benefits and considerations

2021 ◽  
pp. 000486742199879
Author(s):  
Selma Musić ◽  
Rosiel Elwyn ◽  
Grace Fountas ◽  
Inge Gnatt ◽  
Zoe M Jenkins ◽  
...  
Keyword(s):  
Mental Health ◽  
Eating Disorders ◽  
Eating Disorder ◽  
Lived Experience ◽  
Health Research ◽  
Research Process ◽  
Mental Health Research ◽  
Direct Involvement ◽  
The Voice ◽  
Process Benefits

Although the inclusion of individuals with lived experience is encouraged within the research process, there remains inconsistent direct involvement in many mental health fields. Within the eating disorders field specifically, there is a very strong and increasing presence of lived experience advocacy. However, due to a number of potential challenges, research undertaken in consultation or in collaboration with individuals with lived experience of an eating disorder is scarce. This paper describes the significant benefits of the inclusion of individuals with lived experience in research. The specific challenges and barriers faced in eating disorders research are also outlined. It is concluded that in addition to existing guidelines on working with lived experience collaborators in mental health research, more specific procedures are required when working with those with eating disorders.

scholarly journals Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Renske Visser ◽  
Alyce-Ellen Barber ◽  
Anthony X ◽  
Sue Wheatcroft ◽  
Philip Mullen ◽  
...  
Keyword(s):  
Lived Experience ◽  
Cancer Care ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Third Party ◽  
Working Relationships ◽  
Care Needs ◽  
Academic Researchers ◽  
No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

scholarly journals Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Jason A. Randall ◽  
Aiste Guobyte ◽  
Laure Delbecque ◽  
Louise Newton ◽  
Tara Symonds ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Lived Experience ◽  
Thematic Analysis ◽  
Gastrointestinal Disease ◽  
The United States ◽  
Self Report ◽  
Related Quality ◽  
High Level

Abstract Background Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one’s most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2–11 years) living with UC. Methods Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5–11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2–4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis. Results Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life. Conclusions Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8–11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8–11 years age group.

scholarly journals Enhancing the roles of information and communication technologies in doctoral research processes

2020 ◽  
Vol 17 (1) ◽  
Author(s):  
Sarah J. Stein ◽  
Kwong Nui Sim
Keyword(s):  
Information And Communication Technologies ◽  
Thematic Analysis ◽  
Communication Technologies ◽  
Research Process ◽  
Formal Learning ◽  
Doctoral Study ◽  
Ict Skills ◽  
Doctoral Research ◽  
The People ◽  
Information And Communication

Abstract While information and communication technologies (ICT) are prominent in educational practices at most levels of formal learning, there is relatively little known about the skills and understandings that underlie their effective and efficient use in research higher degree settings. This project aimed to identify doctoral supervisors’ and students’ perceptions of their roles in using ICT. Data were gathered through participative drawing and individual discussion sessions. Participants included 11 students and two supervisors from two New Zealand universities. Focus of the thematic analysis was on the views expressed by students about their ideas, practices and beliefs, in relation to their drawings. The major finding was that individuals hold assumptions and expectations about ICT and their use; they make judgements and take action based on those expectations and assumptions. Knowing about ICT and knowing about research processes separately form only part of the work of doctoral study. Just as supervision cannot be considered independently of the research project and the student involved, ICT skills and the use of ICT cannot be considered in the absence of the people and the project. What is more important in terms of facilitating the doctoral research process is students getting their “flow” right. This indicates a need to provide explicit support to enable students to embed ICT within their own research processes.

To study or not to study abroad? students’ decision in perspective of motivations, barriers and attachment

Human Affairs ◽  
2021 ◽  
Vol 31 (2) ◽  
pp. 175-193
Author(s):  
Filip Sulejmanov ◽  
Klára Seitlová ◽  
Martin Seitl ◽  
Barbora Kasalová
Keyword(s):  
Attachment Style ◽  
Thematic Analysis ◽  
Secure Attachment ◽  
Thematic Structure ◽  
Exact Test ◽  
Studying Abroad ◽  
Significant Difference ◽  
Post Hoc ◽  
Attachment Dimensions ◽  
Inductive Thematic Analysis

Abstract The aim of this study is to explore the antecedents of studying abroad. First, we explore motivations for and barriers against studying abroad in two groups of students (who had studied abroad, and who had not studied abroad). Second, differences in attachment dimensions and styles are examined in both groups. A deductive thematic analysis supported the thematic structure identified by Krzaklewska (2008) in regard to motivations. Furthermore, five barriers were identified using inductive thematic analysis. Although the same motivational and barrier themes were found in both groups, there were some notable qualitative differences in meaning attached to them. A one-way MANOVA showed non-significant differences between the two groups of students and attachment dimensions. Finnaly, Fisher’s exact test was conducted, and the post hoc comparison showed that there was a statistically significant difference in the proportion of students who had studied abroad and had a secure attachment style compared to students who had not studied abroad.

Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets

2021 ◽  
Author(s):  
Ariella Meltzer ◽  
Helen Dickinson ◽  
Eleanor Malbon ◽  
Gemma Carey
Keyword(s):  
Lived Experience ◽  
Knowledge Production ◽  
Policy Research ◽  
Market Forces ◽  
Research Knowledge ◽  
Key Points ◽  
People With Disability ◽  
And Control ◽  
Insight Into ◽  
Inputs And Outputs

Background: Many countries use market forces to drive reform across disability supports and services. Over the last few decades, many countries have individualised budgets and devolved these to people with disability, so that they can purchase their own choice of supports from an available market of services.Key points for discussion: Such individualised, market-based schemes aim to extend choice and control to people with disability, but this is only achievable if the market operates effectively. Market stewardship has therefore become an important function of government in guiding markets and ensuring they operate effectively.The type of evidence that governments tend to draw on in market stewardship is typically limited to inputs and outputs and has less insight into the outcomes services do or do not achieve. While this is a typical approach to market stewardship, we argue it is problematic and that a greater focus on outcomes is necessary.Conclusions and implications: To include a focus on outcomes, we argue that market stewards need to take account of the lived experience of people with disability. We present a framework for doing this, drawing on precedents where people with disability have contributed lived experience evidence within other policy, research, knowledge production and advocacy contexts.With the lived experience evidence of people with disability included, market stewardship will be better able to take account of outcomes as they play out in the lives of those using the market and, ultimately, achieve greater choice and control for people with disability.<br />Key messages<br /><ul><li>Market stewardship is key to guiding quasi-markets, including in the disability sector;</li><br /><li>Evidence guiding market stewardship is often about inputs and outputs only;</li><br /><li>It would be beneficial to also include lived experience evidence from people with disability;</li><br /><li>We propose a framework for the inclusion of lived experience evidence in market stewardship.</li></ul>

Knowledge translation activity of a domestic violence research network: a scoping survey

2021 ◽  
Author(s):  
Jacqui Cameron ◽  
Cathy Humphreys ◽  
Kelsey Hegarty
Keyword(s):  
Domestic Violence ◽  
Knowledge Translation ◽  
Lived Experience ◽  
Online Survey ◽  
Research Process ◽  
Research Network ◽  
Translation Strategies ◽  
Inadequate Knowledge ◽  
Knowledge Translation Strategies ◽  
Research Findings

Introduction: Research networks undertake work collaboratively on complex areas of research. Few studies examine how these networks develop their knowledge translation activity. Focusing on a domestic violence research network (DVRN), the aim of this study was to answer the question: What is the shared understanding of knowledge translation and activity in a domestic violence research network?Methods: A sample of DVRN members undertook an anonymous online survey about their knowledge translation activity.Results: Completed by 49 of a potential 65 DVRN members (75% completion rate), findings suggested members use multiple knowledge translation definitions, and that different stages of the research process engage people with lived-experience and policymakers undertaking lower levels of engagement than practitioners. Innovative engagement mechanisms to communicate research findings were limited, and knowledge translation barriers included budget, time, capacity, limitation of models, organisational emphasis and support. Finally, there was inadequate knowledge translation evaluation.Conclusion: Overcoming knowledge translation barriers is essential to ensure meaningful collaboration particularly with survivors who are often the missing voice of knowledge translation. Future studies could determine what impact, if any, increasing engagement of survivors and policymakers during all stages of the research process has on knowledge translation.<br />Key messages<br /><ul><li>This study has identified the need for meaningful collaboration with survivors and policymakers during all stages of the research process.</li><br /><li>Innovative engagement mechanisms are essential to engage end-users.</li><br /><li>A focus on evaluation of knowledge translation strategies is warranted.</li></ul>

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