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Internet-Based Psychosocial Support Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1667 Internet-based Psychosocial Support Design, Effects and User Experience in the Cancer Setting ANNA HAUFFMAN ACTA UNIVERSITATIS UPSALIENSIS ISSN 1651-6206 ISBN 978-91-513-0950-7 UPPSALA urn:nbn:se:uu:diva-408909 2020 Dissertation presented at Uppsala University to be publicly examined in H:son Holmdahlsalen, Uppsala Akademiska Sjukhus, ing 100, Uppsala, Friday, 12 June 2020 at 09:00 for the degree of Doctor of Philosophy (Faculty of Medicine). The examination will be conducted in Swedish. Faculty examiner: Professor Joakim Öhlén (The Sahlgrenska Academy, University of Gothenburg). Abstract Hauffman, A. 2020. Internet-based Psychosocial Support. Design, Effects and User Experience in the Cancer Setting. Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1667. 101 pp. Uppsala: Acta Universitatis Upsaliensis. ISBN 978-91-513-0950-7. Background and Aim Being diagnosed with cancer is often described as a major loss of control leading to severe psychological distress and symptoms of anxiety and depression can continue to affect the individual in the long term. The cancer and its treatment may influence all dimensions of health, thus the psychosocial support provided needs to be multifaceted and easy accessed. Internet-based interventions may be one way to provide such support, but evidence is limited. This thesis aimed to investigate the design, effects, and experiences of internet-based psychosocial support in cancer. Methods and Results Study 1 encompassed a co-creation development process resulting in the interactive support provided as the first step in an internet-based stepped care intervention (iCAN-DO). The effects of iCAN-DO were investigated in a randomised controlled trial, targeting individuals newly diagnosed with cancer and concurrent self-reported symptoms of anxiety and depression (according to the Hospital Anxiety and Depression Scale). Step 1 had a psycho-educative content involving self-care strategies and was available to the intervention group during the ten-month study period. Step 2 comprised a guided internet-based cognitive behavior therapy (iCBT) program and was offered those without improvement in anxiety and depression after using Step 1. The results showed that iCAN-DO improved symptoms of depression compared with standard care, while symptoms of anxiety were largely unaffected. Most participants used Step 1, while only a few used Step 2. In Study 2, aspects of usefulness, relevance, and usability in iCAN-DO were explored through qualitative interviews, analysed using content analysis. Results showed that standard healthcare did not meet the individuals' needs and iCAN-DO was used as complement, providing access to relevant, trustworthy information and support. Usability was affected by the perceived usefulness and ease of use of the intervention, as well as by the user´s circumstances in life and consequences of the cancer. The co-creation process in the development of Step 1 added relevance, but both steps 1 and 2 would have gained from being provided earlier, integrated into standard healthcare and more adaptable to the individual. Conclusion The thesis concluded that the internet-based intervention had positive effects on symptoms of depression in individuals newly diagnosed with cancer. Individuals with cancer experience several unmet needs in standard healthcare and since psycho-educative support including self-care advice seems feasible in this group, efforts are needed to incorporate internet- based support in regular oncology care. Since the intervention did not target all symptoms (i.e. anxiety) further research is needed on how to enhance efficacy and how to make iCBT more feasible for this group. Keywords: Internet, eHealth, Nursing, Oncology, Cancer, Anxiety, Depression, Psychosocial Intervention, Technology-Based Interventions, Stepped Care Anna Hauffman, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology, Rudbecklaboratoriet, Uppsala University, SE-751 85 Uppsala, Sweden. © Anna Hauffman 2020 ISSN 1651-6206 ISBN 978-91-513-0950-7 urn:nbn:se:uu:diva-408909 (http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-408909) To my son As long as you live here You are the monarch of all you survey You own the whole earth From Comet in Moominland by Tove Jansson List of Papers This thesis is based on the following papers, which are referred to in the text by their Roman numerals. I Hauffman, A., Alfonsson, S., Mattsson, S., Forslund, M., Bill- Axelson, A., Nygren, P. Johansson, B. (2017). The development of a nurse-led Internet-based learning and self-care program for cancer patients with symptoms of anxiety and depression—A part of U-CARE. Cancer Nursing, 40(5), E9-E16. II Hauffman A, Alfonsson S, Bill-Axelson A, Bergkvist L, For- slund M, Mattsson S, von Essen L, Nygren P, Igelström H, Jo- hansson B. Co-created Internet-based Stepped Care for Individ- uals with Cancer and Concurrent Symptoms of Anxiety and De- pression: Results from the U-CARE AdultCan Randomized Con- trolled Trial. Submitted. III Hauffman, A., Alfonsson, S., Igelström, H., Johansson, B. Expe- riences of Internet-Based Stepped Care in Individuals With Can- cer and Concurrent Symptoms of Anxiety and Depression: Qual- itative Exploration Conducted Alongside the U-CARE AdultCan Randomized Controlled Trial. Journal of Medical Internet Re- search, 22 (3):e16547. IV Igelström, H. Hauffman, A. Alfonsson, S. Sjöström, J. Cajander, Å. Johansson, B. Delivery, design, and structure of an internet- based stepped care intervention targeting individuals with cancer and concurrent symptoms of anxiety or depression: a qualitative study of user experiences from U-CARE AdultCan. Journal of Medical Internet Research; ahead of print. Reprints were made with permission from the respective publishers. Contents Introduction ................................................................................................... 11 The impact of cancer ................................................................................ 12 Receiving a cancer diagnosis ............................................................... 12 Receiving cancer treatment .................................................................. 13 Common impairments following cancer and cancer treatment ........... 13 Development of anxiety and depression in cancer .............................. 15 Identification and assessment of symptoms ............................................. 17 Patient-reported outcomes ................................................................... 18 Patient-reported outcome measures in the cancer context ................... 19 Psychosocial and psychological interventions promoting health in individuals with cancer ............................................................................. 21 Psychosocial support in regular healthcare during cancer treatment in Sweden ............................................................................................ 22 Psychoeducation and self-efficacy ...................................................... 23 Self-management and self-care ............................................................ 24 Cognitive behavioural therapy ............................................................. 25 Stepped care ......................................................................................... 26 The internet as a tool to improve health .............................................. 26 Rationale for the thesis ............................................................................. 30 Overall and specific aims .............................................................................. 31 Methods ........................................................................................................ 32 Design ...................................................................................................... 32 The U-CARE Portal ............................................................................. 32 Participants and settings ........................................................................... 33 Study 1 (Papers I–II) ............................................................................ 33 The intervention ................................................................................... 36 Study 2 (Papers III–IV) ....................................................................... 43 Ethical considerations (Studies 1 and 2) .............................................. 45 Results ........................................................................................................... 48 The development (Paper I) ....................................................................... 48 Initial test of acceptance ...................................................................... 50 The AdultCan randomised controlled trial (Paper II) ............................... 50 Utilisation ............................................................................................ 52 Perceived benefits ................................................................................ 53 Anxiety and depression ........................................................................ 53 Health-related quality of life and post-traumatic stress ....................... 56 User experiences of relevance and benefit (Paper III) ............................. 58 Gaining knowledge and support but wanting more personalisation ...
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