General Considerations for Conducting Online Qualitative Research and Practice Implications for Interviewing People with Acquired Brain Injury

2021 ◽  
Vol 20 ◽  
pp. 160940692110196
Author(s):  
Megan Topping ◽  
Jacinta Douglas ◽  
Dianne Winkler
Keyword(s):  
Qualitative Research ◽  
Brain Injury ◽  
Lived Experience ◽  
Qualitative Methodology ◽  
Acquired Brain Injury ◽  
Face To Face ◽  
Global Pandemic ◽  
Increased Risk ◽  
Communication Impairments ◽  
Methodological Considerations

Qualitative methodology is key to understanding the lived experience of people with acquired brain injury (ABI). However, as demonstrated during the global pandemic (COVID-19), face-to-face interviewing is not always viable. This lack of availability has been particularly relevant for people with disability who are at increased risk of contracting the virus and experiencing poorer outcomes. Fortunately, advancing technologies provide increasing opportunities for communicating online, thus it is plausible for qualitative disability researchers to adapt to remote interviewing. People with ABI often experience varying degrees of cognitive and communication impairments and therefore require specific considerations in the planning of research projects. In this paper, we examine learnings from existing literature around online qualitative research, specifically for videoconference, focus groups and email-interviewing methods. The key aim is to map out the practical, ethical and methodological considerations when adapting research to an online environment. As interviewing people with ABI online has received little attention in the literature, learnings from broader disability populations and the general population inform much of the considerations. Thus, the suggestions for practice are likely to be relevant to a broader population, but specific implications for people with ABI are discussed. Overall, we propose that it is viable, and sometimes preferable, to utilize online interview techniques but researchers must take care to consider the practical, ethical and methodological implications of doing so.

scholarly journals The Cognitive-Communication Checklist for Acquired Brain Injury: A Means of Identifying, Recording, and Tracking Communication Impairments

2021 ◽  
pp. 1-16
Author(s):  
Sheila MacDonald
Keyword(s):  
Brain Injury ◽  
Lived Experience ◽  
Brain Injuries ◽  
Acquired Brain Injury ◽  
Service Needs ◽  
Communication Service ◽  
Funding Sources ◽  
Premature Discharge ◽  
Communication Impairments ◽  
Referral Tool

Purpose The communication service needs of individuals with acquired brain injuries (ABIs) are frequently overlooked, leading to delays, denials, or premature discharge from communication interventions. This is particularly true for those with subtle cognitive-communication deficits, which may not be apparent until sufficiently challenged at work, in school, or in the community. The purpose of this study was to evaluate a referral tool that could promote understanding of the broad range of communication impairments that occur following ABI and lead to improved identification and referral. Method This study evaluated the Cognitive-Communication Checklist for Acquired Brain Injury (CCCABI) through a survey. The CCCABI is a referral tool that summarizes 45 communication difficulties in 10 areas of cognitive-communication functioning. One hundred sixteen speech-language pathologists, 34 multidisciplinary referral sources, and 41 individuals with lived experience of brain injury were surveyed to evaluate the utility of this referral tool. Results The need for such a referral tool was endorsed by 96% of speech-language pathology respondents, 91% of multidisciplinary respondents, and 100% of respondents with lived experience of brain injury. Responses supported the CCCABI as a clear, comprehensive, and accessible tool for education and identification of the communication impairments that can occur after ABI. Conclusion The CCCABI is a means of increasing understanding of communication service needs following ABI in a manner that is accessible to individuals, families, program designers, funding sources, administrators, and multidisciplinary referral sources.

scholarly journals ‘I Do Not Appear to Have had Previous Letters’. The Potential and Pitfalls of Using a Qualitative Correspondence Method to Facilitate Insights Into Life in Prison During the Covid-19 Pandemic

2021 ◽  
Vol 20 ◽  
pp. 160940692110471
Author(s):  
Matthew Maycock
Keyword(s):  
Qualitative Research ◽  
Data Collection ◽  
Qualitative Methodology ◽  
Research Projects ◽  
Participatory Action ◽  
Action Research Project ◽  
Face To Face ◽  
Significant Challenge ◽  
Ethical Approval ◽  
Research Questions

The Covid-19 pandemic and lockdown represents a significant challenge for qualitative researchers due to social distancing measures restricting face-to-face data collection. At the time of ethical approval (early April 2020), all face-to-face research projects facilitated by the Scottish Prison Service and most prison jurisdictions were paused. In response to these methodological challenges, a participatory action correspondence methodology was designed in order for people in custody to influence the direction of this project by suggesting research questions and themes. This article analyses the potential of this approach, what this illuminated and critically engages with the challenges of implementing this qualitative methodology. Eight participants were selected due to previous participation in a Participatory Action Research project at one Scottish prison. After consent was given via post, eight letters were sent to the participants. This paper analyses the questions relating to, and aspects of Covid-19 that were important to the participants, in the hope that these insights will influence other qualitative research on the impacts of Covid-19 within prison settings. Methodologically and theoretically, this paper illustrates the potential and challenges relating to using a qualitative correspondence method to facilitate unique insights into life in custody during what emerges as a particularly challenging time in prison settings. More widely the paper reiterates and restates the importance of qualitative research methods as methods that provide unique and rich insights into the Covid-19 pandemic.

scholarly journals Sharing stories of lived experience: A qualitative analysis of the intersection of experiences between storytellers with acquired brain injury and storytelling facilitators

2020 ◽  
Vol 83 (9) ◽  
pp. 576-584 ◽  
Author(s):  
Kate D’Cruz ◽  
Jacinta Douglas ◽  
Tanya Serry
Keyword(s):  
Brain Injury ◽  
Lived Experience ◽  
Interpersonal Relationships ◽  
Social Connectedness ◽  
Acquired Brain Injury ◽  
Theory Approach ◽  
Injury Rehabilitation ◽  
Building Relationships ◽  
Severe Acquired Brain Injury ◽  
Story Sharing

Introduction Narrative storytelling is a relational process. While interest in storytelling in brain injury rehabilitation is increasing, little attention has been directed to the interpersonal relationships experienced through storytelling. As part of a larger study exploring narrative storytelling, this paper reports on the intersection of experiences between those sharing their story and those listening to the story. Method A qualitative grounded theory approach informed all stages of the study. In-depth interviews were conducted with adult storytellers with severe acquired brain injury and facilitators of a storytelling advocacy programme. Findings Analysis of the intersection of data from 28 transcripts of interviews with eight storytellers and six facilitators was conducted. Two key relationships emerged to be central to the storytelling experience: (1) a collaborative partnership between the storytellers and the advocacy organisation, and (2) an intentional story-sharing relationship between the storytellers and facilitators. The advocacy context of helping others through story-sharing was central to the meaningfulness of the experience. Conclusion Narrative storytelling is a social relationship experience with much potential for building relationships in rehabilitation. Sharing stories of lived experience of disability presents an opportunity for meaningful occupational engagement, enabling social connectedness and contribution to society.

A co-design approach to examine and develop pathways to open employment for people with acquired brain injury

2020 ◽  
pp. 1-17
Author(s):  
Em Bould ◽  
Libby Callaway
Keyword(s):  
Brain Injury ◽  
Lived Experience ◽  
Acquired Brain Injury ◽  
Design Approach ◽  
Workplace Diversity ◽  
Diversity And Inclusion ◽  
Barriers To Employment ◽  
Economic Participation ◽  
Employment Rates ◽  
Key Staff

Abstract Background and objectives: People with acquired brain injury (ABI) have traditionally experienced low employment rates, compared with the national average and others with disability in Australia. To positively impact mainstream economic participation following ABI, a co-design approach was used to investigate open employment pathways available and consider necessary pathway features to enable employment for people with ABI. Method: A qualitative focus group methodology was used with four groups: people with ABI; health professionals working with this group; employers providing work for people with ABI and social and injury insurers funding employment services. The project was delivered in two phases: (1) review existing work pathways in Australia and gather knowledge about enablers and barriers to employment following ABI and (2) use ABI lived experience, employers’ experience and allied health and social insurer expertise to develop a new pathway to mainstream employment. Results: Co-design helped to identify enablers and barriers to employment of people with ABI, as well as practical strategies to facilitate workplace diversity and inclusion. Enablers included replacing interviews with an onsite assessment to meet key staff and trial work tasks, employer education on ABI, the use of compensatory cognitive aides and graded on-the-job support. This guided the development of a new employment pathway, tailored for people with ABI, called ‘Employment CoLab’. Conclusions: The Employment CoLab pathway, when coupled with person-centred collaborative and effective social disability insurance approaches, offers opportunities to build inclusive, sustainable and scalable economic participation and mainstream wages for people with ABI.

scholarly journals A blended eHealth intervention for insomnia following acquired brain injury study protocol for a randomized controlled trial

2020 ◽  
Author(s):  
Marthe Ford ◽  
Gert J. Geurtsen ◽  
Erny Groet ◽  
Coen A.M. Van Bennekom ◽  
Eus J.W. Van Someren
Keyword(s):  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Cognitive Behavioral Therapy ◽  
Cognitive Functioning ◽  
Behavioral Therapy ◽  
Acquired Brain Injury ◽  
Cognitive Behavioral ◽  
Face To Face ◽  
Trial Register ◽  
Insomnia Severity

Abstract Background: Up to a third of stroke patients and patients with traumatic brain injury suffer from insomnia, including problems to fall asleep or stay asleep at night. Insomnia may exacerbate other brain damage-related problems, for example regarding cognitive functioning and emotional well-being, may lead to poorer quality of life, and may complicate recovery processes. Cognitive behavioral therapy for insomnia, delivered face-to-face or online, is found to be effective in the general population. However, despite the high prevalence and serious consequences of insomnia following acquired brain injury, studies on the efficacy of face-to-face cognitive behavioral treatment in this population are scarce, and this applies even more for studies on online cognitive behavioral therapy. Therefore, this study aims to evaluate the efficacy of a newly developed guided online cognitive behavioral therapy for insomnia following acquired brain injury.Methods: A multicenter, prospective, randomized, open-label, blinded end point study (PROBE) will be conducted, in which 48 patients diagnosed with stroke or traumatic brain injury, and insomnia will be randomly allocated to the online cognitive behavioral therapy for insomnia treatment group or the treatment as usual group. The treatment consists of 6 online cognitive behavioral therapy sessions given on a weekly basis and personalized feedback after each session, combined with 2 face-to-face sessions. Outcomes will be assessed at baseline, immediately after the intervention period and at 6 weeks follow up. The primary outcome is the insomnia severity assessed with the insomnia severity index. Secondary outcome measures include sleep quality, sleep features derived from the sleep diary, fatigue, anxiety and depression, subjective cognitive functioning and societal participation.Discussion: This study will provide insight on the efficacy of online cognitive behavioral therapy for insomnia following stroke and traumatic brain injury.Trial Register: Netherlands Trial Register, NTR7082, 12 March 2018

scholarly journals Evaluating the CARE4Carer Blended Care Intervention for Partners of Patients With Acquired Brain Injury: Protocol for a Randomized Controlled Trial (Preprint)

2017 ◽  
Author(s):  
Vincent CM Cox ◽  
Vera PM Schepers ◽  
Marjolijn Ketelaar ◽  
Caroline M van Heugten ◽  
Johanna MA Visser-Meily
Keyword(s):  
Randomized Controlled Trial ◽  
Brain Injury ◽  
Outcome Measures ◽  
Controlled Trial ◽  
Acquired Brain Injury ◽  
Secondary Outcome ◽  
Face To Face ◽  
Randomized Controlled ◽  
Care Intervention ◽  
Blended Care

BACKGROUND Support programs for partners of patients with acquired brain injury are necessary since these partners experience several unfavorable consequences of caregiving, such as a high burden, emotional distress, and poor quality of life. Evidence-based support strategies that can be included in these support programs are psychoeducation, skill building, problem solving, and improving feelings of mastery. A promising approach would seem to be to combine web-based support with face-to-face consultations, creating a blended care intervention. OBJECTIVE This paper outlines the protocol of a randomized controlled trial to evaluate the CARE4Carer blended care intervention for partners of patients with acquired brain injury. METHODS A multicenter two-arm randomized controlled trial will be conducted. A total of 120 partners of patients with acquired brain injury will be recruited from five rehabilitation centers in the Netherlands. The blended care intervention consists of a nine-session web-based support program and two face-to-face consultations with a social worker. Themes that will be addressed are: giving partners insight into their own situation, including possible pitfalls and strengths, learning how to cope with the situation, getting a grip on thoughts and feelings, finding a better balance in the care for the patient with acquired brain injury, thinking about other possible care options, taking care of oneself, and communication. The intervention lasts 20 weeks and the control group will receive usual care. The outcome measures will be assessed at baseline and at 24- and 40-week follow-up. The primary outcome is caregiver mastery. Secondary outcome measures are strain, burden, family functioning, emotional functioning, coping, quality of life, participation, and social network. RESULTS The effect of the intervention on the primary and secondary outcome measures will be determined. Additional a process evaluation will be conducted. CONCLUSIONS The findings of this study will be used to improve the care for partners of patients with acquired brain injury. Barriers and facilitators that emerge from the process evaluation will be used in the nationwide implementation of the intervention. CLINICALTRIAL Dutch Trial Register NTR6197; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6197 (Archived by WebCite at http://www.webcitation.org/6xHBAxx0y)

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