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      Exploring the digital technology preferences of teenagers and young adults (TYA) with cancer and survivors: a cross-sectional service evaluation questionnaire

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          Abstract

          Purpose

          Digital technology has the potential to support teenagers and young adults (TYAs) with cancer from the onset of their disease into survivorship. We aimed to establish (1) the current pattern of use of TYA digital technologies within our service-user population, and (2) their preferences regarding digital information and support within the service.

          Methods

          A cross-sectional survey was administered as a paper and online self-completed questionnaire to TYAs aged 13–24 accessing outpatient, inpatient, and day care cancer services at a regional specialist centre over a 4-week period.

          Results

          One hundred two TYAs completed the survey (55.7% male; 39.8% female; 83.3% paper; 16.7% online; mean age 18.5 years [SD = 3.51]). Of the TYAs, 41.6% rated the importance of digital communication as “essential” to their lives. Half (51.0%) kept in contact with other patients they had met during treatment, and 12.0% contacted patients they had not met in person. Respondents wanted to receive clinical information online (66.3%) and use online chat rooms (54.3%). Future online services desired included virtual online groups (54.3%), online counselling or psychological support (43.5%), and receiving (66.3%) and sharing (48.9%) clinical information online.

          Conclusions

          Young people with cancer are digital natives. A significant subgroup expressed a desire for digital resources from oncology services, though existing resources are also highly valued. Digital resources have potential to improve patient experience and engagement.

          Implications for cancer survivors

          There is considerable scope to develop digital resources with which TYAs can receive information and connect with both professionals and fellow patients, following diagnosis, through treatment and survivorship.

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          Most cited references26

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          Self-harm and suicide in adolescents.

          Self-harm and suicide are major public health problems in adolescents, with rates of self-harm being high in the teenage years and suicide being the second most common cause of death in young people worldwide. Important contributors to self-harm and suicide include genetic vulnerability and psychiatric, psychological, familial, social, and cultural factors. The effects of media and contagion are also important, with the internet having an important contemporary role. Prevention of self-harm and suicide needs both universal measures aimed at young people in general and targeted initiatives focused on high-risk groups. There is little evidence of effectiveness of either psychosocial or pharmacological treatment, with particular controversy surrounding the usefulness of antidepressants. Restriction of access to means for suicide is important. Major challenges include the development of greater understanding of the factors that contribute to self-harm and suicide in young people, especially mechanisms underlying contagion and the effect of new media. The identification of successful prevention initiatives aimed at young people and those at especially high risk, and the establishment of effective treatments for those who self-harm, are paramount needs. Copyright © 2012 Elsevier Ltd. All rights reserved.
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            Annual Research Review: Digital health interventions for children and young people with mental health problems - a systematic and meta-review

            Digital health interventions (DHIs), including computer-assisted therapy, smartphone apps and wearable technologies, are heralded as having enormous potential to improve uptake and accessibility, efficiency, clinical effectiveness and personalisation of mental health interventions. It is generally assumed that DHIs will be preferred by children and young people (CYP) given their ubiquitous digital activity. However, it remains uncertain whether: DHIs for CYP are clinically and cost-effective, CYP prefer DHIs to traditional services, DHIs widen access and how they should be evaluated and adopted by mental health services. This review evaluates the evidence-base for DHIs and considers the key research questions and approaches to evaluation and implementation.
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              The development of social cognition in adolescence: An integrated perspective.

              Social cognitive processes are critical in navigating complex social interactions and are associated with a network of brain areas termed the 'social brain'. Here, we describe the development of social cognition, and the structural and functional changes in the social brain during adolescence, a period of life characterised by extensive changes in social behaviour and environments. Neuroimaging and behavioural studies have demonstrated that the social brain and social cognition undergo significant development in human adolescence. Development of social cognition and the social brain are discussed in the context of developments in other neural systems, such as those implicated in motivational-affective and cognitive control processes. Successful transition to adulthood requires the rapid refinement and integration of these processes and many adolescent-typical behaviours, such as peer influence and sensitivity to social exclusion, involve dynamic interactions between these systems. Considering these interactions, and how they vary between individuals and across development, could increase our understanding of adolescent brain and behavioural development.
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                Author and article information

                Contributors
                Esha.abrol@nhs.net
                +44 203 447 9086 , Michael.Groszmann@nhs.net
                Journal
                J Cancer Surviv
                J Cancer Surviv
                Journal of Cancer Survivorship
                Springer US (New York )
                1932-2259
                1932-2267
                20 June 2017
                20 June 2017
                2017
                : 11
                : 6
                : 670-682
                Affiliations
                [1 ]GRID grid.450564.6, Highgate Mental Health Centre, , Camden and Islington NHS Foundation Trust, ; Dartmouth Park Hill, N19 5NX London, UK
                [2 ]ISNI 0000 0004 0612 2754, GRID grid.439749.4, Teenage & Young Adult Psych-Oncology Team, Psychological Medicine Dept. Paediatric & Adolescent Division, , University College London Hospital NHS Foundation Trust; UCL Undergraduate Medical School, ; 6th Floor, 250 Euston Road, UCLH, NW1 2BU London, UK
                [3 ]GRID grid.451349.e, Macmillan Cancer Psychological Support Team, , St George’s University Hospitals NHS Foundation Trust, ; London, UK
                [4 ]ISNI 0000000121901201, GRID grid.83440.3b, Division of Psychiatry, , University College London, ; 149 Tottenham Court Road, W1T 7NF London, UK
                [5 ]ISNI 0000 0004 0612 2754, GRID grid.439749.4, Haematology and Stem Cell Transplantation, , University College London Hospital NHS Foundation Trust, ; London, UK
                [6 ]ISNI 0000 0004 0612 2754, GRID grid.439749.4, University College London Hospital NHS Foundation Trust, ; London, UK
                [7 ]GRID grid.439468.4, Camden and Islington NHS Foundation Trust, , St Pancras Hospital, ; 4th Floor, East Wing, 4 Saint Pancras Way, NW1 0PE London, UK
                Article
                618
                10.1007/s11764-017-0618-z
                5671543
                28634734
                217c7dd7-8c6b-4a8e-b500-68684a637f0d
                © The Author(s) 2017

                Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                : 17 September 2016
                : 22 April 2017
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100007602, Programme Grants for Applied Research;
                Award ID: RP-PG-1209-10013
                Award Recipient :
                Categories
                Article
                Custom metadata
                © Springer Science+Business Media, LLC 2017

                Oncology & Radiotherapy
                tya,aya,teenagers,young adults,survivorship,digital communications,service development,technology,psycho-oncology

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