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Internet-based Psychosocial Support: Design, Effects and User Experience in the Cancer Setting
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Description
Abstract [en]

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.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2020. , p. 101
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1667
Keywords [en]
Internet, eHealth, Nursing, Oncology, Cancer, Anxiety, Depression, Psychosocial Intervention, Technology-Based Interventions, Stepped Care
National Category
Medical and Health Sciences Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:uu:diva-408909ISBN: 978-91-513-0950-7 (print)OAI: oai:DiVA.org:uu-408909DiVA, id: diva2:1424029
Public defence
2020-06-12, H:son Holmdahlsalen, Uppsala Akademiska Sjukhus, ing 100, Uppsala, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2020-05-20 Created: 2020-04-16 Last updated: 2020-05-20
List of papers
1. 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
Open this publication in new window or tab >>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
Show others...
2017 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, ISSN 0162-220X, Vol. 40, no 5, p. E9-E16Article in journal (Refereed) Published
Abstract [en]

BACKGROUND:

Having access to information about the disease and being encouraged to participate in self-care activities may reduce anxiety and depression symptoms in cancer patients. Internet-based interventions may be one way to support effective self-care strategies to improve emotional well-being and health-related quality of life.

OBJECTIVE:

The aim of this study was to describe the development and acceptance of an Internet-based program intended to support cancer patients with anxiety and depression symptoms.

METHODS:

A structured collaboration between patients, clinicians, and researchers was used to develop a theory- and evidence-based interactive health communication application (IHCA) based on Orem's self-care deficit nursing theory with influences from Bandura's social learning theory and psychoeducation.

RESULTS:

The result is an IHCA described as a Nurse-led, Internet-based Learning and Self-care program that helps patients to perform self-care using different types of material in interaction with patients and healthcare staff. The acceptance of the program is consistent with the results of similar studies.

CONCLUSIONS:

Collaboration between patients, clinicians, and researchers seems to be a fruitful approach in the development of an IHCA aiming to support cancer patients' self-care strategies. Well-designed intervention studies are needed to evaluate the effects of the IHCA.

IMPLICATIONS FOR PRACTICE:

This article suggests a theoretical foundation for an IHCA and allows researchers and healthcare providers to take part in the discussion regarding format and content of IHCAs.

National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:uu:diva-283650 (URN)10.1097/NCC.0000000000000402 (DOI)000414798700002 ()27223884 (PubMedID)
Funder
U‐Care: Better Psychosocial Care at Lower Cost? Evidence-based assessment and Psychosocial Care via Internet, a Swedish Example
Available from: 2016-04-14 Created: 2016-04-14 Last updated: 2020-04-16Bibliographically approved
2. Co-created Internet-based stepped care for individuals with cancer and concurrent symptoms of anxiety and depression: Results from the U-CARE AdultCan Randomized Controlled Trial
Open this publication in new window or tab >>Co-created Internet-based stepped care for individuals with cancer and concurrent symptoms of anxiety and depression: Results from the U-CARE AdultCan Randomized Controlled Trial
(English)In: Article in journal (Refereed) Submitted
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-408800 (URN)
Available from: 2020-04-14 Created: 2020-04-14 Last updated: 2020-04-16
3. Experiences of Internet-Based Stepped Care in Individuals With Cancer and Concurrent Symptoms of Anxiety and Depression: Qualitative Exploration Conducted Alongside the U-CARE AdultCan Randomized Controlled Trial
Open this publication in new window or tab >>Experiences of Internet-Based Stepped Care in Individuals With Cancer and Concurrent Symptoms of Anxiety and Depression: Qualitative Exploration Conducted Alongside the U-CARE AdultCan Randomized Controlled Trial
2020 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 22, no 3, article id e16547Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Individuals with newly diagnosed cancer may experience impaired health in several aspects and often have a large need for information and support. About 30% will experience symptoms of anxiety and depression, with varying needs of knowledge and support. Despite this, many of these patients lack appropriate support. Internet-based support programs may offer a supplement to standard care services, but must be carefully explored from a user perspective.

OBJECTIVE: The purpose of this study was to explore the participants' perceptions of the relevance and benefits of an internet-based stepped care program (iCAN-DO) targeting individuals with cancer and concurrent symptoms of anxiety and depression.

METHODS: We performed a qualitative study with an inductive approach, in which we used semistructured questions to interview 15 individuals using iCAN-DO. We analyzed the interviews using content analysis.

RESULTS: The analysis found 17 subcategories regarding the stepped care intervention, resulting in 4 categories. Participants described the need for information as large and looked upon finding information almost as a survival strategy when receiving the cancer diagnosis. iCAN-DO was seen as a useful, reliable source of information and support. It was used as a complement to standard care and as a means to inform next of kin. Increased knowledge was a foundation for continued processing of participants' own feelings. The optimal time to gain access to iCAN-DO would have been when being informed of the diagnosis. The most common denominator was feeling acknowledged and supported, but with a desire for further adaptation of the system to each individual's own situation and needs.

CONCLUSIONS: Users saw the internet-based stepped care program as safe and reliable and used it as a complement to standard care. Similar interventions may gain from more personalized contents, being integrated into standard care, or using symptom tracking to adjust the contents. Offering this type of program close to diagnosis may provide benefits to users.

TRIAL REGISTRATION: ClincalTrials.gov NCT-01630681; https://clinicaltrials.gov/ct2/show/NCT01630681.

Keywords
internet-based interactive health communication application, internet-based intervention, internet-based stepped care, oncology nursing, patient portals, psychoeducation, self care, telemedicine
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-408798 (URN)10.2196/16547 (DOI)000522157700001 ()32224483 (PubMedID)
Funder
Swedish Cancer SocietyForte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2020-04-14 Created: 2020-04-14 Last updated: 2020-04-27Bibliographically approved
4. Delivery, design and structure of an internet-based stepped care intervention targeting individuals with cancer and concurrent symptoms of anxiety and depression: a qualitative study of user experiences from U-CARE AdultCan
Open this publication in new window or tab >>Delivery, design and structure of an internet-based stepped care intervention targeting individuals with cancer and concurrent symptoms of anxiety and depression: a qualitative study of user experiences from U-CARE AdultCan
(English)In: Journal of medicial internet research, ISSN 1438-8871Article in journal (Refereed) Accepted
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-408799 (URN)
Available from: 2020-04-14 Created: 2020-04-14 Last updated: 2020-04-16

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