23 research outputs found

    Cancer Survival Experiences Retold Through Web Portal

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    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

    Web-based self-management for young cancer survivors: consideration of user requirements and barriers to implementation.

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    PURPOSE: As the population of young cancer survivors increases, there is a need to develop alternative ways of providing post-treatment support. Online systems potentially offer self-management and e-learning support following cancer treatment. This research aims to explore the self-management support needs of teenage and young adult cancer survivors and consider whether those needs can be met through a web-based self-management resource. METHODS: A mixed methods approach was adopted including an online survey (n = 24), focus groups and interviews with teenage and young adult cancer survivors (n = 7) and interviews with parents of survivors (n = 6), information technology specialists (n = 8) and clinical, nursing and social work professionals (n = 11). RESULTS: All stakeholders were supportive of web-based self-management to meet information and support needs that would supplement continued direct interaction with clinical staff. Barriers to implementation were identified in terms of risks to young people, governance issues and the challenges of providing a long-term service. CONCLUSION: Computer access and use amongst teenagers and young adults is commonplace, and there is an expectation that self-management needs will be met at least partially online in the future. There is a desire for online social support through peer interaction as well personal developmental and clinical management. These elements may need to be run through different systems to cater for governance requirements. IMPLICATIONS FOR CANCER SURVIVORS: An online self-management system could provide support at a number of different levels. The barriers to implementation should be addressed, to ensure that survivors can be supported in this way in the future

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

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    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

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

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    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

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

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    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

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

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    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

    Peer Support and Psychosocial Pain Management Strategies for Children with Systemic Lupus Erythematosus

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    Expectations in the field of the Internet and health: an analysis of claims about social networking sites in clinical literature

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    This article adopts a critical sociological perspective to examine the expectations surrounding the uses of social networking sites (SNSs) articulated in the domain of clinical literature. This emerging body of articles and commentaries responds to the recent significant growth in SNS use, and constitutes a venue in which the meanings of SNSs and their relation to health are negotiated. Our analysis indicates how clinical writing configures the role of SNSs in health care through a range of metaphorical constructions that frame SNSs as a tool, a conduit for information and a traversable space. The use of such metaphors serves not only to describe the new affordances offered by SNSs but also posits distinct lay and professional practices, while reviving a range of celebratory claims about the Internet and health critiqued in sociological literature. These metaphorical descriptions characterise SNS content as essentially controllable by autonomous users while reiterating existing arguments that e-health is both inherently empowering and risky. Our analysis calls for a close attention to these understandings of SNSs as they have the potential to shape future online initiatives, most notably by anticipating successful professional interventions while marginalising the factors that influence users’ online and offline practices and contexts

    Expectations in the field of the Internet and health: an analysis of claims about social networking sites in clinical literature

    Get PDF
    This article adopts a critical sociological perspective to examine the expectations surrounding the uses of social networking sites (SNSs) articulated in the domain of clinical literature. This emerging body of articles and commentaries responds to the recent significant growth in SNS use, and constitutes a venue in which the meanings of SNSs and their relation to health are negotiated. Our analysis indicates how clinical writing configures the role of SNSs in health care through a range of metaphorical constructions that frame SNSs as a tool, a conduit for information and a traversable space. The use of such metaphors serves not only to describe the new affordances offered by SNSs but also posits distinct lay and professional practices, while reviving a range of celebratory claims about the Internet and health critiqued in sociological literature. These metaphorical descriptions characterise SNS content as essentially controllable by autonomous users while reiterating existing arguments that e-health is both inherently empowering and risky. Our analysis calls for a close attention to these understandings of SNSs as they have the potential to shape future online initiatives, most notably by anticipating successful professional interventions while marginalising the factors that influence users’ online and offline practices and contexts

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

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    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
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