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      Cancer Survivors’ Experience With Telehealth: A Systematic Review and Thematic Synthesis

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          Abstract

          Background

          Net survival rates of cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer the care of cancer survivors—individuals living with and beyond cancer—to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and health care professionals (HCPs), is an important contributor to this evolving model of care. Telehealth interventions are “complex,” and understanding patient experiences of them is important in evaluating their impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth are yet to be synthesized.

          Objective

          To systematically identify, appraise, and synthesize qualitative research evidence on the experiences of adult cancer survivors participating in telehealth interventions, to characterize the patient experience of telehealth interventions for this group.

          Methods

          Medline (PubMed), PsychINFO, Cumulative Index for Nursing and Allied Health Professionals (CINAHL), Embase, and Cochrane Central Register of Controlled Trials were searched on August 14, 2015, and March 8, 2016, for English-language papers published between 2006 and 2016. Inclusion criteria were as follows: adult cancer survivors aged 18 years and over, cancer diagnosis, experience of participating in a telehealth intervention (defined as remote communication or remote monitoring with an HCP delivered by telephone, Internet, or hand-held or mobile technology), and reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) checklist for qualitative research was used to assess paper quality. The results section of each included article was coded line by line, and all papers underwent inductive analysis, involving comparison, reexamination, and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies.

          Results

          Across the 22 included papers, 3 analytical themes emerged, each with 3 descriptive subthemes: (1) influence of telehealth on the disrupted lives of cancer survivors (convenience, independence, and burden); (2) personalized care across physical distance (time, space, and the human factor); and (3) remote reassurance—a safety net of health care professional connection (active connection, passive connection, and slipping through the net). Telehealth interventions represent a convenient approach, which can potentially minimize treatment burden and disruption to cancer survivors’ lives. Telehealth interventions can facilitate an experience of personalized care and reassurance for those living with and beyond cancer; however, it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden.

          Conclusions

          Telehealth interventions can provide cancer survivors with independence and reassurance. Future telehealth interventions need to be developed iteratively in collaboration with a broad range of cancer survivors to maximize engagement and benefit.

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          Most cited references51

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          Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness

          Background In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding – and sometimes preventing – disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment. Discussion As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization. Summary Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts.
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            Understanding patients' experiences of treatment burden in chronic heart failure using normalization process theory.

            Our goal was to assess the burden associated with treatment among patients living with chronic heart failure and to determine whether Normalization Process Theory (NPT) is a useful framework to help describe the components of treatment burden in these patients. We performed a secondary analysis of qualitative interview data, using framework analysis, informed by NPT, to determine the components of patient "work." Participants were 47 patients with chronic heart failure managed in primary care in the United Kingdom who had participated in an earlier qualitative study about living with this condition. We identified and examined data that fell outside of the coding frame to determine if important concepts or ideas were being missed by using the chosen theoretical framework. We were able to identify and describe components of treatment burden as distinct from illness burden using the framework. Treatment burden in chronic heart failure includes the work of developing an understanding of treatments, interacting with others to organize care, attending appointments, taking medications, enacting lifestyle measures, and appraising treatments. Factors that patients reported as increasing treatment burden included too many medications and appointments, barriers to accessing services, fragmented and poorly organized care, lack of continuity, and inadequate communication between health professionals. Patient "work" that fell outside of the coding frame was exclusively emotional or spiritual in nature. We identified core components of treatment burden as reported by patients with chronic heart failure. The findings suggest that NPT is a theoretical framework that facilitates understanding of experiences of health care work at the individual, as well as the organizational, level. Although further exploration and patient endorsement are necessary, our findings lay the foundation for a new target for treatment and quality improvement efforts toward patient-centered care.
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              What is telemedicine? A collection of 104 peer-reviewed perspectives and theoretical underpinnings.

              Nearly half a century ago, telemedicine was disregarded for being an unwieldy, unreliable, and unaffordable technology. Rapidly evolving telecommunications and information technologies have provided a solid foundation for telemedicine as a feasible, dependable, and useful technology. Practitioners from a variety of medical specialties have claimed success in their telemedicine pursuits. Gradually, this new modality of healthcare delivery is finding its way into the mainstream medicine. As a multidisciplinary, dynamic, and continually evolving tool in medicine, researchers and users have developed various definitions for telemedicine. The meaning of telemedicine encapsulated in these definitions varies with the context in which the term was applied. An analysis of these definitions can play an important role in improving understanding about telemedicine. In this paper we present an extensive literature review that produced 104 peer-reviewed definitions of telemedicine. These definitions have been analyzed to highlight the context in which the term has been defined. The paper also suggests a definition of modern telemedicine. The authors suggest that telemedicine is a branch of e-health that uses communications networks for delivery of healthcare services and medical education from one geographical location to another. It is deployed to overcome issues like uneven distribution and shortage of infrastructural and human resources. We expect that this study will enhance the level of understanding and meaning of telemedicine among stakeholders, new entrants, and researchers, eventually enabling a better quality of life.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                January 2017
                09 January 2017
                : 19
                : 1
                : e11
                Affiliations
                [1] 1School of Health Sciences Faculty of Health and Medical Sciences University of Surrey GuildfordUnited Kingdom
                Author notes
                Corresponding Author: Anna Cox a.cox@ 123456surrey.ac.uk
                Author information
                http://orcid.org/0000-0001-5254-1296
                http://orcid.org/0000-0001-5941-5233
                http://orcid.org/0000-0002-5918-3417
                http://orcid.org/0000-0003-0714-6339
                http://orcid.org/0000-0001-5529-7022
                http://orcid.org/0000-0002-6279-5537
                http://orcid.org/0000-0003-4289-2433
                http://orcid.org/0000-0001-5436-8036
                Article
                v19i1e11
                10.2196/jmir.6575
                5259589
                28069561
                c8fb7fde-588c-4133-a5c4-e7fd3a39142e
                ©Anna Cox, Grace Lucas, Afrodita Marcu, Marianne Piano, Wendy Grosvenor, Freda Mold, Roma Maguire, Emma Ream. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 09.01.2017.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 31 August 2016
                : 2 November 2016
                : 14 November 2016
                : 23 November 2016
                Categories
                Review
                Review

                Medicine
                neoplasms,telemedicine,systematic review,survival,patient satisfaction,patient preference
                Medicine
                neoplasms, telemedicine, systematic review, survival, patient satisfaction, patient preference

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