Cancer Survival Experiences Retold Through Web Portal

The purpose of this paper is to examine the experience of cancer survivors while they are still a patient of cancer. Their reflections were documented in video form and published via a web portal entitled ‘Share’. Besides that, this paper also seeks to understand the impact of experience retold via the portal to media users who are generally the support group members. This research uses a qualitative approach which involved five cancer survivors for the actual interviews while two cancer survivors for pilot interviews. The researcher conducted in-depth interviews with empathetic listening approach in order to collect the cancer survivor’s experience. Maslow’s Theory of Motivation is adopted as a conceptual framework for guiding the research particularly in framing the interview questions that focuses on exploring the physiological, safety, love and belonging needs of cancer survivors which is the first three levels discussed in Maslow’s theory. A survey is disseminated to the support group to understand their perception towards the Share’s portal. The results informed that the cancer survivors needs have been identified accordingly to the first three levels of Maslow’s theory. The cancer survivors’ needs were similar to each other when they were still patients. Their sharing intention was high, because they had reached a certain level of attitude compared to the time when they are healthy after experiencing a bigger challenge in their lives. As for the feedbacks from the support group majority of the feedbacks support the role of this portal to keep them connected and agreed on the importance to have such a portal to cater to their support group. This study enables the researcher to understand the experience sharing process and learning from the cancer survivors. Besides that, this study offers a better understanding of the needs of cancer patients. This study benefits the cancer support group in Malaysia because of the fundamental needs for the cancer support group to enable them to have a better knowledge, experiences, and advice sharing to new cancer patients. Such information offers the community a better understanding of the needs of cancer patients based on Maslow’s Theory of Needs. Maslow’s Theory is widely used in the healthcare and hospice study in the recent year

Understanding the Relationship between Social Media Use and Depression: A Systematic Review

There have been many studies on the relationship between social media use and depression in recent years, but there are inconsistencies between their findings. Using the systematic review method, we analyzed the existing body of work on the relationship between social media use and depression in the information systems field. We selected the Web of Science, Emerald, JSTOR, Science Direct, Taylor & Francis Online and Wiley Online Library as search databases, and ended up with 24 papers that met all our requirements. We identified four possible reasons for the inconsistencies. First, the measurement indicators of social media use are different. Second, depression is not measured in the same way. Third, the studies considered different populations of social media users. Fourth, the mediating factors are different with regards to the relationship between social media use and depression. This study provides literature supported theoretical insights for further exploration and analysis

SOCIAL MEDIA, HELP OR HINDRANCE: WHAT ROLE DOES SOCIAL MEDIA PLAY IN YOUNG PEOPLE\u27S MENTAL HEALTH?

Social media is a huge force in the lives of young people with wide ranging effects on their development; given the importance of adolescence in the genesis of mental illness, social media is a factor in the mental health of young people. Despite the role that social media obviously plays in the development of mental illness, little research has been done into the impact that social media has on in the mental illness of young people. In general, what research there is points towards social media having a large impact on young people in both positive and negative ways. In particular, certain studies show a greater incidence and severity of bullying online compared to offline which may contribute to the development of depression. This contrasts with the positive impact that social media seems to have for young people in minority groups (ethnic minorities and those with chronic disease or disability) by allowing them to connect with others who live similar lives despite geographical separation. This acts as a positive influence in these people\u27s lives though a direct link to mental illness was not shown. Overall, several important issues are raised: firstly, the lack of research that has been conducted in the area; secondly, the gulf that exists between the generation of younger, \u27digital native\u27 generations and the older generations who are not as engaged with social media; and finally, the huge potential that exists for the use of social media as a protective influence for adolescents. With proper engagement, policy makers and health professionals could use social media to connect with young people on issues like mental health

The role of social support network in e-health services for elderly persons

Regardless of the abundant literature on the relationship between social support network and health outcomes of the elderly, there are nearly no studies examining them in the online context. In this paper, we explore the role of social support network in e-health services in the context of a European project, whose aim is to develop a multimedia platform providing social e-services for elderly persons and their social entourage. We collect data in three European countries to examine the relationship among the social network, social support, e-service quality, satisfaction, perceived quality of life and health-promotion behavior. This study contributes to the extension of IS service quality research to the context of social networks, and offers IS practitioners some insights to provide better e-health services

Being normal, not vulnerable: case study of a 2-day residential programme for young adults with cancer.

OBJECTIVES: To identify and describe the outcomes and facilitating processes of participation at 'Find Your Sense of Tumour' (FYSOT), a 2-day residential programme/conference for young people with cancer, from the perspective of professionals attending and patient representatives. DESIGN: Case study. SETTING: Observation of the 'Find Your Sense of Tumour' over 18s residential programme and face-to-face interviews in hospital and phone interviews. PARTICIPANTS: Twenty-six participants - 19 professionals from hospitals across the UK who accompanied young people to FYSOT; 3 programme organisers; and 4 young people from the programme steering committee. METHODS: Participant observation and semistructured interviews. RESULTS: This process evaluation of an educational, social and peer-to-peer support residential weekend for young people with cancer identified key outcomes for young people - positive attitudes (increased sociability, confidence), belonging (feeling accepted, understood), recreation (trying new activities, having fun) and increased knowledge (balance between educational talks and interactions with other young people); and three overarching facilitating processes - being with other young people, the professionals accompanying young people to the event for support and guidance, and the conference/intentional programming. Being in a safe, relaxed and fun environment with other young people facilitates the development of peer support networks and increases young people's confidence and knowledge. Although the focus of the residential programme is on young people, interviewees acknowledge the impact of attending on professionals' motivation, learning and changes in practice. CONCLUSIONS: This study has extended our understanding of the role of residential programmes by identifying outcomes and facilitating mechanisms. We have shown that residential programmes have an important role in providing participants with social, emotional and informational support, as well as play an important role in redefining normality. Longitudinal quantitative and qualitative research is needed to optimise outcomes and design and implement quality programmes that support young people's development

Children's at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1.

The aim of this pilot study was to evaluate Children's at Home (C@H), a dedicated social media website for parents of adolescents with neurofibromatosis type 1 (NF1). The interventional study included two phases: (1) creating video intervention/prevention assessment (VIA) visual narratives about having an adolescent with NF1 and (2) interacting on C@H, a secure, medically moderated social media website. C@H was evaluated qualitatively at three time points. At enrollment (T0, N = 17), participants reported needing C@H to break their isolation, connect with other families, and receive accurate information, advice, and support from others facing similar challenges. At T1, after creating VIA during 6 months (N = 13, 145 videos), participants mostly valued the opportunity to speak about the challenges they face with NF1 and their journey since diagnosis. At T2, after interacting on C@H for 7 weeks (N = 10, two sign-ins/week/parent), participants reported connecting with other parents of children with NF1 for the first time, valuing the "real faces" and emotions of other parents with shared experiences providing a sense of normalcy. Qualitative analysis suggested that C@H decreased feelings of isolation, provided relief to talk about NF1 without having to explain it, provided new knowledge about NF1 and the opportunity to address non-medical issues of NF1 never discussed in clinic, and helped participants with putting their lives into perspective. C@H allowed parents of adolescents with NF1 to overcome previous isolation and connect for the first time. Innovative applications of social media dedicated to those who care for children with chronic conditions can provide peer-to-peer support, shared experience, and reliable medical information

The Lived Experience of Young Adult Burn Survivors\u27 Use of Social Media

The purpose of this phenomenological study was to illuminate the meaning of social media use by young adult burn survivors. Five females and four males, aged 20-25, who sustained burns \u3e 25%, were interviewed. Van Manen\u27s (1999) phenomenological methodology provided the framework for this study. The meaning of the context of the lived experience is described in the five essential themes of identity, connectivity, social support, making meaning, and privacy. These young adult burn survivors, having experienced the traumatic effects of a burn during adolescence, use social media as a way of expressing their identity, while being cautious about privacy. Part of that process involves connecting others to enable a flow of social support and information, which is motivating and encouraging. Social media facilitates an accessible exchange of information that helps young adult burn survivors make meaning out of the traumatic event. The Neuman Systems Model was found to support the findings of this study

Essays on Health Information Technology: Insights from Analyses of Big Datasets

The current dissertation provides an examination of health information technology (HIT) by analyzing big datasets. It contains two separate essays focused on: (1) the evolving intellectual structure of the healthcare informatics (HI) and healthcare IT (HIT) scholarly communities, and (2) the impact of social support exchange embedded in social interactions on health promotion outcomes associated with online health community use. Overall, this dissertation extends current theories by applying a unique combination of methods (natural language processing, machine learning, social network analysis, and structural equation modeling etc.) to the analyses of primary datasets. The goal of the first study is to obtain a full understanding of the underlying dynamics of the intellectual structures of HI and its sub-discipline HIT. Using multiple statistical methods including citation and co-citation analysis, social network analysis (SNA), and latent semantic analysis (LSA), this essay shows how HIT research has emerged in IS journals and distinguished itself from the larger HI context. The research themes, intellectual leadership, cohesion of these themes and networks of researchers, and journal presence revealed in our longitudinal intellectual structure analyses foretell how, in particular, these HI and HIT fields have evolved to date and also how they could evolve in the future. Our findings identify which research streams are central (versus peripheral) and which are cohesive (as opposed to disparate). Suggestions for vibrant areas of future research emerge from our analysis. The second part of the dissertation focuses on comprehensively understanding the effect of social support exchange in online health communities on individual members’ health promotion outcomes. This study examines the effectiveness of online consumer-to-consumer social support exchange on health promotion outcomes via analyses of big health data. Based on previous research, we propose a conceptual framework which integrates social capital theory and social support theory in the context of online health communities and test it through a quantitative field study and multiple analyses of a big online health community dataset. Specifically, natural language processing and machine learning techniques are utilized to automate content analysis of digital trace data. This research not only extends current theories of social support exchange in online health communities, but also sheds light on the design and management of such communities

Online research involving young people with cancer: an exploration of guidance, policies and regulations governing internet-mediated research

Background: Internet-mediated research methodologies are increasingly used to study young people with cancer at any stage during the illness trajectory. Researchers are increasingly debating the ethics of these methods. Despite this limited attention has been given to the actual ethical issues that arise during the study. Furthermore, few studies have explored the types of ethical conflicts that research ethics committees (RECs) identify in relation to this type of research. / Objective: The aim of the thesis is to explore ethical issues by 1) identifying the ethical conflicts researchers report in Internet-mediated research and 2) exploring the content of REC documentation and compare the ethical issues arising in Internet-mediated versus offline research. / Methods: Chapter 1: A review of the literature outlining the development of ethical guidelines and critiques of the current system. Additionally, the chapter outlines the debate on ethical issues in Internet-mediated research involving young people with lifelimiting or life-threatening conditions. Chapter 2: A systematic review of original English language research describing Internetmediated research involving young people with cancer and young cancer survivors (aged 13-25) to explore the methods employed and what ethical issues arose during the study. Chapter 3: A document analysis of REC documentation associated with applications for Internet-mediated research and offline research with young people with malignant or nonmalignant conditions to explore what impact if any Internet-mediated methodology has on REC appraisal and practice. Chapter 4: A discussion of the findings of the thesis, the implications for research and an exploration of directions for future research. / Results: While few studies reported on ethical issues arising over the course of the study researchers tended to highlight privacy and prevention of harm. This was replicated in the chapter 3 whereby we identified few ethical issues unique to Internet-mediated research. This contrasts with the extensive literature on these methodologies indicating unique ethical considerations. / Implications: There is misplaced emphasis in the literature on the need for additional ethical guidelines specifically developed for Internet-mediated research. The novel findings of this study contribute to the discussion over the ethics of Internet-mediated research with young people with life-limited and life-threatening conditions and how RECs are practically applying guidelines