The self-management of chronic conditions and the experience of cyber-victimisation in the United Kingdom

A thesis submitted to the University of Bedfordshire, in fulfilment of the requirements for the degree of Doctor of Philosophy (PhD)Background The victimisation of people with chronic conditions and disabilities has physical, mental and psychosocial consequences. Although this victimisation is documented, victims usually struggle to get the proper support. Research focusing on cyber-victimisation of people with long-term conditions is limited and lacks qualitative elements. Aims This study aimed to understand the impact of cyber-victimisation among individuals living with chronic conditions in the UK. Methods A mixed-method design was adopted using a mixed-method online survey, followed by in-depth interviews with victims. The participants were encouraged to share their voices as experts in their own experiences. This was supported by short interviews with general practitioners (GPs) as the gatekeepers to the health system and one of the supportive channels available to victims. A systematic review was completed and published, which helped to identify gaps in the literature. Primary data was collected from 55 victim support groups, patient-support groups, and via social media. The challenges in recruiting victims for this sensitive topic were identified and published to guide future research. The theoretical framework underpinning the study incorporated the Biographical Disruption model, Self-Management and Social Support. Results Quantitative data from 152 participants showed that almost one in every two people with chronic conditions was cyber-victimised (45.39%). In total, 76.81% of victims had a self-reported disability, and the relationship between cyber-victimisation and disability was statistically significant. Furthermore, 61.11% of victims reported that experiencing cyber-victimisation had affected their self-management plan. The highest impact was on lifestyle changes such as exercise, diet, avoiding triggers, and avoiding excessive smoking or alcohol drinking. This was followed by changes to medications and follow up with healthcare professionals. Indeed, 69% of victims perceived a worsened self-efficacy scale for health condition self-management following cyber-victimisation. In general, formal support was rated poor, with only 24.53% of victims having spoken to their GPs with variable responses. Six themes emerged from the qualitative data: Biomedical Events (overall health - physical complaints), Impact on Mental Health (psychological and psychiatric effects - helplessness), Multi-level Impact (existing vulnerability - disruption and reprioritisation), The Impact of Complexity (complex situation - struggle for support), Social Network Involvement (social isolation and victim blaming - controversial social support - misrepresentation of self), and Disability Discrimination (inclusion, culture and hate – tax and disability benefits). The participating GPs thought that cyber-victimisation had both mental and physical impact on people with chronic conditions, with concerns over online health forums use. GPs’ responses were influenced by individual variations. Conclusion Cyber-victimisation against people with chronic conditions is prevalent. It is a traumatic event that was introduced after the biographical disruption and working to cope with long-term conditions. It triggered significant fear, had a devastating impact and depleted victims of social support. The impact was multifaceted, and the results from the survey and interviews were convergent. They were also confirmed by the GPs’ input. The outcomes provided an in-depth understanding of the impact of cyber-victimisation on such marginalised groups. To initiate change, the results were summarised in a health promotion design that was informed by the participants and gatekeepers, and improved for dissemination. Further context-specific, condition-specific, participatory, and multidisciplinary work are indicated

The Impact of Cybervictimization on the Self-Management of Chronic Conditions:Lived Experiences

BackgroundCybervictimization of people with long-term conditions is a disturbing phenomenon with a documented impact on health and well-being. These experiences are primarily examined using quantitative methods, focusing on children and young people. However, research centered on the cybervictimization of adults with chronic conditions is scarce, with limited qualitative input from the victims as experts in their own experiences. ObjectiveThis study aims to understand the impact of cybervictimization on the self-management of long-term conditions among adults with chronic conditions and disabilities in the United Kingdom. MethodsThis paper reports the findings from the qualitative phase of a phenomenologically informed mixed methods study. The biographical disruption concept was used to conceptualize the study. In-depth semistructured interviews were conducted with 13 participants with chronic conditions who experienced cybervictimization. A codebook was developed, and a zigzag approach to thematic analysis was used to define and refine themes. Ethical considerations and risk assessment were ongoing during the research process because of the sensitivity of the topic and cases of harassment. ResultsCybervictimization has direct and indirect impacts on the self-management of chronic conditions. This impact was verified across 6 overarching themes that emerged from this study. First, biomedical events included overall health deterioration because of existing conditions, new diagnoses, and subjective physical complaints. Second, the impact on mental health was perceived through psychological consequences and psychiatric disorders that developed after or during this traumatic experience. Third, the multilevel impact theme focused on disrupting the strategies for coping with health conditions and involved unplanned changes to victims’ health management priorities. Fourth, the impact of complexity reflected the perceived uniqueness in each case, intersectionality, struggle to obtain formal support, and subsequent health complications. Fifth, social network involvement comprised the effects of social isolation, victim blaming, and deception. Finally, the disability discrimination theme focused on prejudice, issues on inclusion, and hostility in society, with subsequent effects on well-being. ConclusionsPeople with long-term conditions experienced different forms of cybervictimization, all disruptive with various effects on health. Disability discrimination was a prominent finding to be further investigated. This paper reports the impact as themes to guide further research and practice, with the recognition that long-term conditions and impairments are not a homogeneous group. Despite the devastating consequences, there are positive points that strengthen potential interventions. Awareness-raising campaigns, training of support channels, and multidisciplinary research are recommended to tackle this issue and initiate change

Challenges facing online research: Experiences from research concerning cyber-victimisation of people with disabilities

Abstract The victimisation of people living with disabilities and chronic conditions is a documented phenomenon. It ranges from harassment incidents to disability hate crimes, and causes physical, mental and psychosocial consequences. The Internet has further reshaped this phenomenon which lead to “cyber-victimisation” experiences, with no less impact upon victims. This methodology paper focuses mainly on the challenges and implications of using online methods in a UK-based study exploring the impact of cyber-victimisation on people coping with disabilities and chronic conditions. Mixed-method design was adopted via an online-survey followed by in-depth interviewing of victims. Online recruitment was through victim-support groups, patient-support groups, and social media. Out of 80 organisations and charities approached, 51(63.8%) gatekeepers helped to reach participants. Recruitment and data collection process was challenged by four overarching themes: 1) social identity in online support groups, 2) the role of online gatekeepers, 3) the contradictory role of social media, and 4) promoting inclusivity. These challenges were theorised from the perspective of the Social Identity Theory. Representing self as a victim and/or a disabled-person had its implications on virtual groups’ membership, social media use, gatekeepers’ decisions and subsequent participation. Some identity aspects were highlighted as positive points to improve engagement with research. In conclusion, the Internet has aggravated the vulnerability of people with disabilities, but it also has a huge potential in researching sensitive topics with this group. Future research in the cyberspace should acknowledge the challenges of online identities of disabled victimised people, and focus on positive identity aspects to facilitate the research process and encourage collaborative participation at early stages of research. Keywords: cyberstalking; cyberharrasment; disability hate crime; Social Identity Theory; online research; methodological challenge

‘The language is disgusting and they refer to my disability’: the cyberharassment of disabled people

Disabled people face hostility and harassment in their sociocultural environment. The use of electronic-communications creates an online context that further reshape this discrimination. We explored the experiences of 19 disabled victims of cyberharassment. Five themes emerged from the study: disability and health consequences, family involvement, misrepresentation of self, perceived complexity, and lack of awareness and expertise. Cyberharassment incidents against disabled people were influenced by the pre-existing impairment, perceived hate-targeting, and perpetrators faking disability to get closer to victims online. Our findings highlight a growing issue requiring action and proper support

Cyber-victimisation of adults with long-term conditions in the UK: A cross-sectional study

Background: Individuals living with chronic conditions and disabilities experience harassment and cyber-victimisation which impose distressing consequences. This is mostly documented among children and adolescents. However, the scope of such experiences is not well-documented among adults with long-term conditions, and the potential impact was not examined from a public health perspective in this context. Objective: This study aims to examine the scope of cyber-victimisation among adults living with long term conditions in the UK and the perceived impact on the self-management of chronic conditions. Methods: This paper reports the findings of the quantitative phase of a mixed-method study in the UK. An online survey was developed and disseminated, the recruitment was online via 55 victim support groups, health support organisations, and social media accounts of non-governmental organisations and activists. Results: Quantitative data from 152 participants showed that almost one in every two adults with chronic conditions was cyber-victimised (45.39%). Most victims (76.81%) had a self-reported disability, and the relationship between cyber-victimisation and disability was statistically significant. The most common means to contact the victims included Facebook (63.24%), followed by personal email or text messaging, each accounting for 27(39.71%). Nine participants (13.24%) were victimised in online health forums. Furthermore, 61.11% of victims reported that experiencing cyber-victimisation had affected their health condition self-management plan. The highest impact was on lifestyle changes such as exercise, diet, avoiding triggers, and avoiding excessive smoking or alcohol drinking. This was followed by changes to medications and follow up with healthcare professionals. The majority of victims (69%) perceived a worsened self-efficacy on the Self-Efficacy for Managing Chronic Diseases Scales. In general, formal support was rated poor, with only 24.53% of victims having disclosed this experience to their physicians. Conclusions:Cyber-victimisation of people with chronic conditions is prevalent. It triggered significant fear, worsened disability discrimination, and negatively influenced the self-management of different health conditions. Further context-specific and condition-specific research are needed. Clinical Trial: N/

Blockchain and IoMT against physical abuse: bullying in schools as a case study

© 2020 The Authors. Published by MDPI. This is an open access article available under a Creative Commons licence. The published version can be accessed at the following link on the publisher’s website: https://doi.org/10.3390/jsan10010001By law, schools are required to protect the well-being of students against problems such as on-campus bullying and physical abuse. In the UK, a report by the Office for Education (OfE) showed 17% of young people had been bullied during 2017–2018. This problem continues to prevail with consequences including depression, anxiety, suicidal thoughts, and eating disorders. Additionally, recent evidence suggests this type of victimisation could intensify existing health complications. This study investigates the opportunities provided by Internet of Medical Things (IoMT) data towards next-generation safeguarding. A new model is developed based on blockchain technology to enable real-time intervention triggered by IoMT data that can be used to detect stressful events, e.g., when bullying takes place. The model utilises private permissioned blockchain to manage IoMT data to achieve quicker and better decision-making while revolutionising aspects related to compliance, double-entry, confidentiality, and privacy. The feasibility of the model and the interaction between the sensors and the blockchain was simulated. To facilitate a close approximation of an actual IoMT environment, we clustered and decomposed existing medical sensors to their attributes, including their function, for a variety of scenarios. Then, we demonstrated the performance and capabilities of the emulator under different loads of sensor-generated data. We argue to the suitability of this emulator for schools and medical centres to conduct feasibility studies to address sensor data with disruptive data processing and management technologies.This research was funded by Innovate UK, grant number 133891.Published onlin

A Practical Guide to Coping with Cyberstalking

To create fear, distress and to disrupt the daily activities of another person through cyberstalking is a crime, if you are currently affected by cyberstalking, it is crucial that you alert the police to your situation to keep yourself safe. This practical guide offers an outline of the area of cyberstalking and cyber abuse. Written in an approachable way, it describes the forms of intrusions that have been identified by research and through the accounts of victims. It considers the motivations of cyberstalkers and the enormous impact cyberstalking has on the lives of victims as well as the threats posed. The book provides advice and information about security for people currently experiencing cyberstalking and those who simply wish to take steps to further secure their online presence by taking preventative steps. The personal experience of living with threatening intrusions and recovery from the trauma of cyberstalking is explored

Challenges facing online research: Experiences from research concerning cyber-victimisation of people with disabilities

The victimisation of people living with disabilities and chronic conditions is a documented phenomenon. It ranges from harassment incidents to disability hate crimes, and causes physical, mental and psychosocial consequences. The Internet has further reshaped this phenomenon which lead to “cyber-victimisation” experiences, with no less impact upon victims. This methodology paper focuses mainly on the challenges and implications of using online methods in a UK-based study exploring the impact of cyber-victimisation on people coping with disabilities and chronic conditions. Mixed-method design was adopted via an online-survey followed by in-depth interviewing of victims. Online recruitment was through victim-support groups, patient-support groups, and social media. Out of 80 organisations and charities approached, 51(63.8%) gatekeepers helped to reach participants. Recruitment and data collection process was challenged by four overarching themes: 1) social identity in online support groups, 2) the role of online gatekeepers, 3) the contradictory role of social media, and 4) promoting inclusivity. These challenges were theorised from the perspective of the Social Identity Theory. Representing self as a victim and/or a disabled-person had its implications on virtual groups’ membership, social media use, gatekeepers’ decisions and subsequent participation. Some identity aspects were highlighted as positive points to improve engagement with research. In conclusion, the Internet has aggravated the vulnerability of people with disabilities, but it also has a huge potential in researching sensitive topics with this group. Future research in the cyberspace should acknowledge the challenges of online identities of disabled victimised people, and focus on positive identity aspects to facilitate the research process and encourage collaborative participation at early stages of research