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Development of a discussion tool to enable well-being by providing choices for people with dementia: a qualitative study incorporating codesign and participatory action research.

ABSTRACT: OBJECTIVE:To codesign a discussion tool to facilitate negotiation of risk between health professionals, people with dementia and carers. METHODS:A qualitative approach using codesign. Thematic analysis was used to analyse interviews and focus groups with people with dementia, carers, healthcare staff and healthy older people exploring the issue of risk in dementia, the acceptability and development of a discussion tool. RESULTS:Sixty-one participants identified the breadth, depth and complexity of risk in dementia care and the need for individualised solutions. They also deemed a discussion tool to facilitate negotiation of risk was acceptable and responses informed the tool development. Twenty-two participants provided feedback that was used to refine the final version. CONCLUSION:Our discussion tool enables choices for people with dementia by focusing on abilities rather than deficits and assists health professionals to deliver person-centred care. Flash cards prompt concerns and the tool provides a range of strategies to address these issues.

SUBMITTER: Goeman DP

PROVIDER: S-EPMC5695371 | biostudies-literature | 2017 Nov

REPOSITORIES: biostudies-literature

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Development of a discussion tool to enable well-being by providing choices for people with dementia: a qualitative study incorporating codesign and participatory action research.

Goeman Dianne Patricia DP Dickins Marissa M Iliffe Steve S Pond Dimity D O'Keefe Fleur F

BMJ open 20171114 11

<h4>Objective</h4>To codesign a discussion tool to facilitate negotiation of risk between health professionals, people with dementia and carers.<h4>Methods</h4>A qualitative approach using codesign. Thematic analysis was used to analyse interviews and focus groups with people with dementia, carers, healthcare staff and healthy older people exploring the issue of risk in dementia, the acceptability and development of a discussion tool.<h4>Results</h4>Sixty-one participants identified the breadth, ...[more]

PMID: 29138202

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Project description:BackgroundEnabling people with dementia to 'live well' is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures.MethodsThree scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined.FindingsSix conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia.ConclusionAn assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based 'in-the-moment' measurement.

Project description:BackgroundLow-income Caribbean transmigrant women face unique health challenges during pregnancy that set forth multidimensional implications for the design of mobile health (mHealth). Acknowledgment of the unique health needs of low-income Caribbean immigrant women in the United States and what that entails regarding technology design remains rarely examined in the literature of mHealth technologies.ObjectiveThe goal of this study was to reveal the needs and gaps in mHealth interventions for pregnant immigrant women not yet realized in this field. These understandings reveal design opportunities for mHealth.MethodsThe use of the qualitative participatory action research approach of codesign workshops in this study resulted in design solutions by the participants after reflecting on their earlier focus group discussions. The highlights are not the resulting designs per se but rather the inferences derived from the researcher reflecting on these designs.ResultsThe designs exposed two themes relevant to this paper. First, the participants desired the inclusion and rebuilding of social and organizational relationships in mHealth. The resulting designs formulate an understanding of the women's health-related social support needs and how technology can facilitate them. Second, the participants wanted entertainment with an element of social participation incorporated in mHealth pregnancy management interventions. This brings attention to the role entertainment can add to the impact mHealth can deliver for pregnancy well-being.ConclusionsThe study concluded with an examination of social and entertainment design implications that reveal pregnant immigrant women's virtual health-related sharing habits, choice of sharing interaction scenarios during pregnancy (eg, local, long distance, one-way, two-way, and many-many), and choice of sharing media (eg, text, voice, and video). Additionally, the study revealed exclusions to social sharing capabilities in health technologies for these women.

Project description:IntroductionIn connection with a hospital stay, patients have to make important health-related decisions. They need to find, understand, assess and apply health-related information, and therefore, require health literacy. Adequately responding to the needs of patients requires promoting the communication skills of healthcare professionals within healthcare organisations. Health-literate healthcare organisations can provide an environment strengthening professionals' and patients' health literacy. When developing health-literate healthcare organisations, it has to be considered that implementing organisational change is typically challenging. In this study, a communication concept based on previously evaluated communication training is codesigned, implemented and evaluated in four clinical departments of a university hospital.Method and analysisIn a codesign phase, focus group interviews among employees and patients as well as a workshop series with employees and hospital management are used to tailor the communication concept to the clinical departments and to patients' needs. Also, representatives responsible for the topic of health literacy are established among employees. The communication concept is implemented over a 12-month period; outcomes studied are health literacy on the organisational and patient levels. Longitudinal survey data acquired from a control cohort prior to the implementation phase are compared with data of an intervention cohort after the implementation phase. Moreover, survey data from healthcare professionals before and after the implementation are compared. For formative evaluation, healthcare professionals are interviewed in focus groups.Ethics and disseminationThe study protocol was approved by the Ethics Committee of the Medical Faculty of the University of Oldenburg and is in accordance with the Declaration of Helsinki. Study participants are asked to provide written informed consent. The results are disseminated via direct communication within the hospital, publications and conference presentations. If the intervention turns out to be successful, the intervention and implementation strategies will be made available to other hospitals.Trial registration numberDRKS00019830.

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Development of a discussion tool to enable well-being by providing choices for people with dementia: a qualitative study incorporating codesign and participatory action research.

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Development of a discussion tool to enable well-being by providing choices for people with dementia: a qualitative study incorporating codesign and participatory action research.

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