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      Theory and Practice in Digital Behaviour Change: A Matrix Framework for the Co-Production of Digital Services That Engage, Empower and Emancipate Marginalised People Living with Complex and Chronic Conditions

      , , , , , ,
      Informatics
      MDPI AG

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          Abstract

          Background: The WHO framework on integrated people-centred health services promotes a focus on the needs of people and their communities to empower them to have a more active role in their own health. It has advocated five strategies including: Engaging and empowering people and communities; co-ordinating services within and across sectors; and, creating an enabling environment. Any implementation of these strategies needs to occur at individual, community, and health service levels. Useful steps to reorganising health service provision are already being guided by existing models of care linked to increased adoption and use of digital technologies with examples including: Wagner’s Chronic Care Model (CCM); Valentijn’s Rainbow Model of Integrated Care (RMIC); and Phanareth’s et al.’s Epital Care Model (ECM). However, what about individuals and the communities they live in? How will strategies be implemented to address known inequities in: the social determinants of health; access to, and use of digital technologies, and individual textual, technical, and health literacies? Proposal of a matrix framework: This paper argues that people with complex and chronic conditions (PwCCC) living in communities that are at risk of being under-served or marginalised in health service provision require particular attention. It articulates a step-by-step process to identify these individuals and co-produce mechanisms to engage, empower and ultimately emancipate these individuals to become activated in living with their conditions and in their interactions with the health system and community. This step-by-step process focuses on key issues related to the design and role of digital services in mitigating the effects of the health service inequity and avoiding the creation of an e-health divide amongst users when advocating digital behaviour change initiatives. This paper presents a matrix framework providing a scaffold across three inter-related levels of the individual; the provider, and the health and care system. The matrix framework supports examination of and reflection on the design and role of digital technologies in conjunction with pre-existing motivational instruments. This matrix framework is illustrated with examples from practice. Conclusion: It is anticipated that the matrix framework will evolve and can be used to map and reflect on approaches and practices aiming to enrich and stimulate co-production activities supported by digital technology focused on enhancing people-centred health services for the marginalised.

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          Most cited references33

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          Goal striving, need satisfaction, and longitudinal well-being: the self-concordance model.

          An integrative model of the conative process, which has important ramifications for psychological need satisfaction and hence for individuals' well-being, is presented. The self-concordance of goals (i.e., their consistency with the person's developing interests and core values) plays a dual role in the model. First, those pursuing self-concordant goals put more sustained effort into achieving those goals and thus are more likely to attain them. Second, those who attain self-concordant goals reap greater well-being benefits from their attainment. Attainment-to-well-being effects are mediated by need satisfaction, i.e., daily activity-based experiences of autonomy, competence, and relatedness that accumulate during the period of striving. The model is shown to provide a satisfactory fit to 3 longitudinal data sets and to be independent of the effects of self-efficacy, implementation intentions, avoidance framing, and life skills.
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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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              Self-management education programs in chronic disease: a systematic review and methodological critique of the literature.

              Self-management programs have been widely reported to help patients manage symptoms and contain utilization of health care resources for several chronic conditions, but to date no systematic review across multiple chronic diseases has been reported. We evaluated the efficacy of patient self-management educational programs for chronic diseases and critically reviewed their methodology. We searched MEDLINE and HealthSTAR for the period January 1, 1964, through January 31, 1999, then hand searched the reference section of each article for other relevant publications. We included studies if a self-management education intervention for a chronic disease was reported, a concurrent control group was included, and clinical outcomes were evaluated. Two authors reviewed each study and extracted the data on clinical outcomes. We included 71 trials of self-management education. Trial methods varied substantially and were suboptimal. Diabetic patients involved with self-management education programs demonstrated reductions in glycosylated hemoglobin levels (summary effect size, 0.45; 95% confidence interval [CI], 0.17-0.74); diabetic patients had improvement in systolic blood pressure (summary effect size, 0.20; 95% CI, 0.01-0.39); and asthmatic patients experienced fewer attacks (log rate ratio, 0.59; 95% CI, 0.35-0.83). Although we found a trend toward a small benefit, arthritis self-management education programs were not associated with statistically significant effects. Evidence of publication bias existed. Self-management education programs resulted in small to moderate effects for selected chronic diseases. In light of evidence of publication bias, further trials that adhere to a standard methodology would help clarify whether self-management education is worthwhile.
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                Author and article information

                Journal
                Informatics
                Informatics
                MDPI AG
                2227-9709
                December 2018
                November 09 2018
                : 5
                : 4
                : 41
                Article
                10.3390/informatics5040041
                ef12a483-04c1-49e2-a37e-70e66e1a6d7e
                © 2018

                https://creativecommons.org/licenses/by/4.0/

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