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"Taking care of myself as long as I can": How People with Dementia Configure Self-Management Systems.

ABSTRACT: Self-management research in HCI has addressed a variety of conditions. Yet, this literature has largely focused on neurotypical populations and chronic conditions that can be managed, leaving open questions of what self-management might look like for populations with progressive cognitive impairment. Grounded in interviews with seventeen technology savvy people with mild to moderate dementia, our analysis reveals their use of technological and social resources as part of the work of self-management. We detail how participants design self-management systems to enable desired futures, function well in their social world, and maintain control. Our discussion broadens the notion of self-management to include future-oriented, sociotechnical, self-determinate design. We advocate for expanding the way technologists, designers, and HCI scholars view people with mild to moderate dementia to recognize them as inventive creators and capable actors in self-management.

SUBMITTER: Dixon E

PROVIDER: S-EPMC8265518 | biostudies-literature | 2021 May

REPOSITORIES: biostudies-literature

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"Taking care of myself as long as I can": How People with Dementia Configure Self-Management Systems.

Dixon Emma E Piper Anne Marie AM Lazar Amanda A

Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference 20210501

Self-management research in HCI has addressed a variety of conditions. Yet, this literature has largely focused on neurotypical populations and chronic conditions that can be managed, leaving open questions of what self-management might look like for populations with progressive cognitive impairment. Grounded in interviews with seventeen technology savvy people with mild to moderate dementia, our analysis reveals their use of technological and social resources as part of the work of self-managem ...[more]

PMID: 34250524

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Project description:The health of people living with HIV (PLWH) and the sustained success of antiretroviral therapy (ART) programmes depends on PLWH's motivation and ability to self-manage the condition over the long term, including adherence to drugs on a daily basis. PLWH's self-management of HIV and their wellbeing are likely to be interrelated. Successful self-management sustains wellbeing, and wellbeing is likely to motivate continued self-management. Detailed research is lacking on PLWH's self-management processes on ART in resource-limited settings. This paper presents findings from a study of PLWH's self-management and wellbeing in Wakiso District, Uganda. Thirty-eight PLWH (20 women, 18 men) were purposefully selected at ART facilities run by the government and by The AIDS Support Organisation in and around Entebbe. Two in-depth interviews were completed with each participant over three or four visits. Many were struggling economically, however the recovery of health and hope on ART had enhanced wellbeing and motivated self-management. The majority were managing their condition well across three broad domains of self-management. First, they had mobilised resources, notably through good relationships with health workers. Advice and counselling had helped them to reconceptualise their condition and situation more positively and see hope for the future, motivating their work to self-manage. Many had also developed a new network of support through contacts they had developed at the ART clinic. Second, they had acquired knowledge and skills to manage their health, a useful framework to manage their condition and to live their life. Third, participants were psychologically adjusting to their condition and their new 'self': they saw HIV as a normal disease, were coping with stigma and had regained self-esteem, and were finding meaning in life. Our study demonstrates the centrality of social relationships and other non-medical aspects of wellbeing for self-management which ART programmes might explore further and encourage.

Project description:ObjectivesSignificant problems with patients engaging with diabetes self-management education (DSME) exist. The role of healthcare professionals (HCPs) has been highlighted, with a lack of enthusiasm, inadequate information provision and poor promotion of available programmes all cited as affecting patients' decisions to attend. However, little is known about HCPs' views towards DSME. This study investigates the views of HCPs towards self-management generally and self-management in the context of DSME more specifically.DesignA qualitative study using semi-structured interviews to investigate HCPs views of type 2 diabetes self-management and DSME. Data were analysed thematically and emergent themes were mapped on to the constructs of Normalisation Process Theory (NPT).SettingTwo boroughs in London, UK.ParticipantsSampling was purposive to recruit a diverse range of professional roles including GPs, practice nurses, diabetes specialist nurses, healthcare assistants (HCAs), receptionists and commissioners of care.ResultsInterviews were conducted with 22 participants. The NPT analysis demonstrated that while a self-management approach to diabetes care was viewed by HCPs as necessary and, in principle, valuable, the reality is much more complex. HCPs expressed ambivalence about pushing certain patients into self-managing, preferring to retain responsibility. There was a lack of awareness among HCPs about the content of DSME and benefits to patients. Commitment to and engagement with DSME was tempered by concerns about suitability for some patients. There was little evidence of communication between providers of group-based DSME and HCPs or of HCPs engaging in work to follow-up non-attenders.ConclusionsHCPs have concerns about the appropriateness of DSME for all patients and discussed challenges to engaging with and performing the tasks required to embed the approach within practice. DSME, as a means of supporting self-management, was considered important in theory, but there was little evidence of HCPs seeing their role as extending beyond providing referrals.

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"Taking care of myself as long as I can": How People with Dementia Configure Self-Management Systems.

Publications

"Taking care of myself as long as I can": How People with Dementia Configure Self-Management Systems.

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