scholarly journals Exploring the Role of Web-Based Interventions in the Self-management of Dementia: Systematic Review and Narrative Synthesis (Preprint)

2020 ◽  
Author(s):  
Abigail Rebecca Lee ◽  
Esther Vera Gerritzen ◽  
Orii McDermott ◽  
Martin Orrell
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Self Management ◽  
Future Research ◽  
Narrative Synthesis ◽  
High Quality ◽  
High Quality Research ◽  
Web Based ◽  
Management Concepts

BACKGROUND The increasing prevalence of dementia has promoted a move toward equipping people with the skills required for greater self-management of the condition to enable a better quality of life. Self-management encompasses numerous skills, such as goal setting and decision making, which aim to improve an individual’s physical and mental well-being when they live with long-term health conditions. Effective self-management may lead to increased well-being and quality of life. Reviews of web-based and app-based interventions have suggested that they have the potential to provide self-management support for people living with a range of conditions, including dementia. OBJECTIVE The aim of this review is to explore the existing use of web-based or app-based interventions that facilitate or support self-management in dementia and discuss their effectiveness in promoting self-management and independence. METHODS A total of 5 electronic databases were systematically searched for relevant articles published between January 2010 and March 2020. Included studies were appraised using the Downs and Black checklist and the Critical Appraisal Skills Program qualitative research checklist. A narrative synthesis framework was applied using tables and conceptual mapping to explore the relationships within and among studies. RESULTS A total of 2561 articles were identified from the initial search, of which 11 (0.43%) met the inclusion criteria for the final analysis. These included 5 quantitative, 4 mixed methods, and 2 qualitative studies. All the included articles were of fair to high quality across the two appraisal measures. Interventions were delivered through a range of web-based and app-based technologies and targeted several self-management concepts. However, there was inconsistency regarding the domains, often affected by dementia, that were targeted by the interventions reviewed. CONCLUSIONS Web-based and app-based interventions for dementia can be delivered through a range of means and can target different aspects of self-management. The small number of studies included in this review report positive outcomes that seem to support the use of these interventions for people living with dementia. However, there is a clear need for more high-quality research into this type of intervention delivery and for studies that use a much larger number of participants across the dementia spectrum. Future research should consider the barriers to and facilitators of intervention adoption highlighted in this review and whether interventions can encompass the physical, social, cognitive, and emotional domains affected by dementia.

scholarly journals Exploring the Role of Web-Based Interventions in the Self-management of Dementia: Systematic Review and Narrative Synthesis

10.2196/26551 ◽  
2021 ◽  
Vol 23 (7) ◽  
pp. e26551
Author(s):  
Abigail Rebecca Lee ◽  
Esther Vera Gerritzen ◽  
Orii McDermott ◽  
Martin Orrell
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Self Management ◽  
Future Research ◽  
Narrative Synthesis ◽  
High Quality ◽  
High Quality Research ◽  
Web Based ◽  
Management Concepts

Background The increasing prevalence of dementia has promoted a move toward equipping people with the skills required for greater self-management of the condition to enable a better quality of life. Self-management encompasses numerous skills, such as goal setting and decision making, which aim to improve an individual’s physical and mental well-being when they live with long-term health conditions. Effective self-management may lead to increased well-being and quality of life. Reviews of web-based and app-based interventions have suggested that they have the potential to provide self-management support for people living with a range of conditions, including dementia. Objective The aim of this review is to explore the existing use of web-based or app-based interventions that facilitate or support self-management in dementia and discuss their effectiveness in promoting self-management and independence. Methods A total of 5 electronic databases were systematically searched for relevant articles published between January 2010 and March 2020. Included studies were appraised using the Downs and Black checklist and the Critical Appraisal Skills Program qualitative research checklist. A narrative synthesis framework was applied using tables and conceptual mapping to explore the relationships within and among studies. Results A total of 2561 articles were identified from the initial search, of which 11 (0.43%) met the inclusion criteria for the final analysis. These included 5 quantitative, 4 mixed methods, and 2 qualitative studies. All the included articles were of fair to high quality across the two appraisal measures. Interventions were delivered through a range of web-based and app-based technologies and targeted several self-management concepts. However, there was inconsistency regarding the domains, often affected by dementia, that were targeted by the interventions reviewed. Conclusions Web-based and app-based interventions for dementia can be delivered through a range of means and can target different aspects of self-management. The small number of studies included in this review report positive outcomes that seem to support the use of these interventions for people living with dementia. However, there is a clear need for more high-quality research into this type of intervention delivery and for studies that use a much larger number of participants across the dementia spectrum. Future research should consider the barriers to and facilitators of intervention adoption highlighted in this review and whether interventions can encompass the physical, social, cognitive, and emotional domains affected by dementia.

scholarly journals Quality of life support in advanced cancer—web and technological interventions: systematic review and narrative synthesis

2021 ◽  
pp. bmjspcare-2020-002820
Author(s):  
Kathleen Kane ◽  
Fiona Kennedy ◽  
Kate L Absolom ◽  
Clare Harley ◽  
Galina Velikova
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Life Support ◽  
Well Being ◽  
Narrative Synthesis ◽  
Monitoring Tools ◽  
Technological Interventions ◽  
Cancer Trajectory ◽  
Interactive Health Communication

BackgroundAs treatments continue to progress, patients with advanced cancer are living longer. However, ongoing physical side-effects and psychosocial concerns can compromise quality of life (QoL). Patients and physicians increasingly look to the internet and other technologies to address diverse supportive needs encountered across this evolving cancer trajectory.Objectives1. To examine the features and delivery of web and technological interventions supporting patients with advanced cancer. 2. To explore their efficacy relating to QoL and psychosocial well-being.MethodsRelevant studies were identified through electronic database searches (MEDLINE, PsychINFO, Embase, CINAHL, CENTRAL, Web of Science and ProQuest) and handsearching. Findings were collated and explored through narrative synthesis.ResultsOf 5274 identified records, 37 articles were included. Interventions were evaluated within studies targeting advanced cancer (13) or encompassing all stages (24). Five subtypes emerged: Interactive Health Communication Applications (n=12), virtual programmes of support (n=11), symptom monitoring tools (n=8), communication conduits (n=3) and information websites (n=3). Modes of delivery ranged from self-management to clinically integrated. Support largely targeted psychosocial well-being, alongside symptom management and healthy living. Most studies (78%) evidenced varying degrees of efficacy through QoL and psychosocial measures. Intervention complexity made it challenging to distinguish the most effective components. Incomplete reporting limited risk of bias assessment.ConclusionWhile complex and varied in their content, features and delivery, most interventions led to improvements in QoL or psychosocial well-being across the cancer trajectory. Ongoing development and evaluation of such innovations should specifically target patients requiring longer-term support for later-stage cancer.PROSPERO registration numberCRD42018089153.

scholarly journals Determining the psychometric properties of a novel questionnaire to measure “preparedness for the future” (Prep FQ)

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Daren K. Heyland ◽  
J. Paige Pope ◽  
Xuran Jiang ◽  
Andrew G. Day
Keyword(s):  
Quality Of Life ◽  
Construct Validity ◽  
Health Behaviors ◽  
Psychometric Properties ◽  
Well Being ◽  
High Quality ◽  
The Future ◽  
Quality Of Death ◽  
Test Retest Reliability

Abstract Background People are living longer than ever before. However, with living longer comes increased problems that negatively impact on quality of life and the quality of death. Tools are needed to help individuals assess whether they are practicing the best attitudes and behaviors that are associated with a future long life, high quality of life, high quality of death and a satisfying post-death legacy. The purpose of paper is to describe the process we used to develop a novel questionnaire (“Preparedness for the Future Questionnaire™ or Prep FQ”) and to define its psychometric properties. Methods Using a multi-step development procedure, items were generated, for the new questionnaire after which the psychometric properties were tested with a heterogeneous sample of 502 Canadians. Using an online polling panel, respondents were asked to complete demographic questions as well as the Prep-FQ, Global Rating of Life Satisfaction, the Keyes Psychological Well-Being scale and the Short-Form 12. Results The final version of the questionnaire contains 34 items in 8 distinct domains (“Medico-legal”, “Social”, “Psychological Well-being”, “Planning”, “Enrichment”, “Positive Health Behaviors”, “Negative Health Behaviors”, and “Late-life Planning”). We observed minimum missing data and good usage of all response options. The average overall Prep FQ score is 51.2 (SD = 13.3). The Cronbach alphas assessing internal reliability for the Prep FQ domains ranged from 0.33 to 0.88. The intra-class correlation coefficient (ICC) used to assess the test–retest reliability had an overall score of 0.87. For the purposes of establishing construct validity, all the pre-specified relationships between Prep FQ and the other questionnaires were met. Conclusion Analyses of this novel measure offered support for its face validity, construct validity, test–retest reliability, and internal consistency. With the development of this useful and valid scale, future research can utilize this measure to engage people in the process of comprehensively assessing and improving their state of preparedness for the future, tracking their progress along the way. Ultimately, this program of research aims to improve the quality and quantity of peoples live by helping them ‘think ahead’ and ‘plan ahead’ on the aspects of their daily life that matter to their future.

scholarly journals Community intervention strategies to reduce the impact of financial strain and promote financial well-being: a comprehensive rapid review

2021 ◽  
Vol 28 (1) ◽  
pp. 42-50
Author(s):  
Nicole M. Glenn ◽  
Lisa Allen Scott ◽  
Teree Hokanson ◽  
Karla Gustafson ◽  
Melissa A. Stoops ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Community Intervention ◽  
Well Being ◽  
Small Sample ◽  
Financial Strain ◽  
Rapid Review ◽  
Research Centre ◽  
Future Research ◽  
The Impact

Financial well-being describes when people feel able to meet their financial obligations, feel financially secure and are able to make choices that benefit their quality of life. Financial strain occurs when people are unable to pay their bills, feel stressed about money and experience negative impacts on their quality of life and health. In the face of the global economic repercussions of the COVID-19 pandemic, community-led approaches are required to address the setting-specific needs of residents and reduce the adverse impacts of widespread financial strain. To encourage evidence-informed best practices, a provincial health authority and community-engaged research centre collaborated to conduct a rapid review. We augmented the rapid review with an environmental scan and interviews. Our data focused on Western Canada and was collected prior to the pandemic (May–September 2019). We identified eight categories of community-led strategies to promote financial well-being: systems navigation and access; financial literacy and skills; emergency financial assistance; asset building; events and attractions; employment and educational support; transportation; and housing. We noted significant gaps in the evidence, including methodological limitations of the included studies (e.g. generalisability, small sample size), a lack of reporting on the mechanisms leading to the outcomes and evaluation of long-term impacts, sparse practice-based data on evaluation methods and outcomes, and limited intervention details in the published literature. Critically, few of the included interventions specifically targeted financial strain and/or well-being. We discuss the implications of these gaps in addition to possibilities and priorities for future research and practice. We also consider the results in relation to the COVID-19 pandemic and its economic consequences.

scholarly journals Family Variables and Quality of Life in Children with Down Syndrome: A Scoping Review

2021 ◽  
Vol 18 (2) ◽  
pp. 419
Author(s):  
Anna Lee ◽  
Kathleen Knafl ◽  
Marcia Van Riper
Keyword(s):  
Quality Of Life ◽  
Down Syndrome ◽  
Scoping Review ◽  
Personal Development ◽  
Well Being ◽  
Future Research ◽  
Cross Sectional ◽  
Children With Down Syndrome ◽  
Family Variables

The purpose of this scoping review was to identify the family and child quality of life variables that have been studied in relation to one another in children with Down syndrome, the frequency with which different relationships have been studied, and the extent to which family variables were the focus of the research aims. A literature search was conducted to find studies published between January 2007 and June 2018. The initial search yielded 2314 studies; of these, 43 were selected for a final review. Researchers most often addressed family resources and family problem-solving and coping concerning child personal development and physical well-being. Little attention to child emotional well-being was observed, with none considering family appraisal of child emotional well-being. The relationship between family variables and child QoL rarely was the primary focus of the study. Methodologically, most reviewed studies used cross-sectional designs, were conducted in North America and based on maternal report. From future research considering the issues found in this review, healthcare providers can obtain an in-depth understanding of relationships between children and family variables.

scholarly journals Coping Behavior of Persons with Disabilities as a Factor of Quality of Life and Subjective Well-Being

2018 ◽  
Vol 26 (4) ◽  
pp. 101-118 ◽  
Author(s):  
S.A. Khazova ◽  
N. Shipova ◽  
T.N. Adeeva ◽  
I.V. Tikhonova
Keyword(s):  
Quality Of Life ◽  
Coping Strategies ◽  
Coping Behavior ◽  
Well Being ◽  
Separate Analysis ◽  
Subjective Well Being ◽  
High Quality ◽  
Persons With Disabilities ◽  
Rehabilitation Programs

The article presents an analysis of the problem of determining disabled-since-childhood adults’ quality of life. We suggested that coping behavior was a factor of high quality of life and subjective well-being. The sample (N=102) included disabled-since-childhood adults’ (N=51) with visual (N=16), hearing (N=18) and mobility disabilities (N=17) and adults with typical development (N=51). The respondents` average age is 37 years. Methods: the brief questionnaire WHOQOL-BREF in the adaptation of the V.M. Bechterev Research Institute; M.V. Sokolova’s Subjective Well-Being Scale; The Ways of Coping Questionnaire (Folkman, Lazarus, adapted by Kryukova T.L., Kuftyak E.V.). The results indicate a sufficiently high quality of life of adults with disabilities regardless of the type of disorders. The links between coping strategies, indicators of quality of life and subjective well-being are described. Distancing, avoidance and positive revaluation strategies make the greatest contribution to the quality of life. We conducted a separate analysis of the determination of the quality of life by coping strategies in groups of people with various disabilities. The results of the study can be used to develop rehabilitation programs and help people with disabilities.

Why We Ought to Accept the Repugnant Conclusion

Utilitas ◽  
2002 ◽  
Vol 14 (3) ◽  
pp. 339-359 ◽  
Author(s):  
Torbjorn Tannsjo
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Derek Parfit ◽  
Worth Living ◽  
Repugnant Conclusion ◽  
High Quality ◽  
Hedonistic Utilitarianism ◽  
Sentient Beings ◽  
Very High

Derek Parfit has famously pointed out that ‘total’ utilitarian views, such as classical hedonistic utilitarianism, lead to the conclusion that, to each population of quite happy persons there corresponds a more extensive population with people living lives just worth living, which is (on the whole) better. In particular, for any possible population of at least ten billion people, all with a very high quality of life, there must be some much larger imaginable population whose existence, if other things are equal, would be better, even though its members have lives that are barely worth living. This world is better if the sum total of well-being is great enough, and it is great enough if only enough sentient beings inhabit it. This conclusion has been considered by Parfit and others to be ‘repugnant’.

Supporting Self-Management and Quality of Life in Bipolar Disorder with the Beta PolarUs App: Protocol for a Mixed-Methods Study (Preprint)

2022 ◽  
Author(s):  
Erin E Michalak ◽  
Steven J Barnes ◽  
Emma Morton ◽  
Heather O'Brien ◽  
Greg Murray ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Management Strategies ◽  
Community Based Participatory Research ◽  
Self Management ◽  
Community Based ◽  
Self Monitoring ◽  
Web Based ◽  
Beta Version

BACKGROUND Quality of life (QoL) is increasingly recognised as a key outcome of self-management interventions for bipolar disorder (BD). Mobile phone applications (apps) can increase access to evidence-based self-management strategies and provide real-time support. However, while individuals with lived experience desire support with monitoring and improving broader health domains, existing BD apps largely target mood symptoms only. Further, evidence from the broader mHealth literature has shown that the desires and goals of end-users are not adequately taken into account during app development, and as a result engagement with mental health apps is suboptimal. To capitalise on the potential of apps to optimise wellness in BD, there is a need for interventions developed in consultation with real-world users that are designed to support QoL self-monitoring and self-management. Objective: This mixed methods pilot study is designed to evaluate the beta version of the newly developed PolarUs app, which aims to support QoL self-monitoring and self-management in people with BD. Developed using a community-based participatory research framework, the PolarUs app builds on the web-based adaptation of a BD-specific QoL self-assessment measure, and integrates material from a web-based portal providing information on evidence-informed self-management strategies in BD. OBJECTIVE The primary objectives of this project are to: (1) evaluate PolarUs app feasibility (via behavioral usage metrics); (2) evaluate PolarUs impact (via the Brief Quality of Life in Bipolar Disorders, QoL.BD scale, our primary outcomes measure); and (3) explore engagement with the PolarUs app (via both quantitative and qualitative methods). METHODS Study participants will be North American residents (N=150) aged 18-65 years with a DSM-5 diagnosis of BD-I, BD-II or BD not otherwise specified (NOS) as assessed by a structured diagnostic interview. An embedded mixed-methods research design will be adopted; qualitative interviews with a purposefully selected sub-sample (~n=30) of participants will be conducted to explore in more depth feasibility, impact and engagement with the PolarUs app over the 12-week study period. RESULTS At the time of publication of this protocol, the development of the beta version of the PolarUs app is complete. Participant enrollment is expected to begin in February 2022. Data collection is expected to be completed by December 2022. CONCLUSIONS Beyond contributing knowledge on the feasibility and impacts of a novel app to support QoL and self-management in BD, this study is also expected to provide new knowledge on engagement with mHealth apps. Furthermore, it is expected to function as a case study of successful co-design between individuals living with BD, clinicians who specialise in the treatment of BD, and BD researchers, providing a template for future use of community-based participatory research frameworks in mHealth intervention development. Results will be used to further refine the PolarUs app and inform the design of a larger clinical trial.

An expanded nomological network of experienscape

2020 ◽  
Vol 32 (3) ◽  
pp. 999-1040 ◽  
Author(s):  
Asli D.A. Tasci ◽  
Abraham Pizam
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Future Research ◽  
Subjective Happiness ◽  
Subjective Well Being ◽  
Nomological Network ◽  
Multiple Stakeholders ◽  
Content Type ◽  
Holistic Understanding

Purpose Bitner’s (1992) concept of servicescape has received widespread academic attention, resulting in many conceptual and empirical studies. By scanning the servicescape literature and other relevant concepts, Pizam and Tasci (2019) provided experienscape, an expanded version of servicescape, to be measured from different stakeholders’ perspectives with a multidisciplinary approach. This paper aims to build on Pizam and Tasci’s conceptualization of experienscape and expand its nomological network with other pertinent concepts related to different stakeholders with an interdisciplinary approach. Design/methodology/approach This is a conceptual study analyzing diverse literature related to servicescape, experienscape and other related concepts and theories to provide an integrated and holistic picture of experienscape for more robust theory development. Several new relationships are synthesized for hypothesis development and testing in future research. Findings The review of past research reveals that servicescape literature has mostly focused on outcomes for the benefit of brands and firms and missed outcomes for consumers and other stakeholders. In addition, servicescape literature lacks several critical concepts in the affective, cognitive and behavioral reaction domains, as well as moderator factors. The relevance of some theories such as branding (e.g. brand identity, personality, image, perceived quality, consumer value, brand value and self-congruity), cocreation/coproduction/codestruction, transformation, subjective happiness, subjective well-being and quality of life is completely overlooked. Research limitations/implications Experienscape is a container of complex systems where needs, wants and expectations of multiple stakeholders are entertained, often at the same time through dynamic interactions among multiple stakeholders. Thus, a holistic understanding of experienscape requires dynamic integration of theories explaining the behavior of different stakeholders by cross-fertilizing theories through interdisciplinary research rather than unidisciplinary or multidisciplinary research conducted in separate silos. Originality/value By adopting Pizam and Tasci’s (2019) experienscape concept, this study expanded the relational network of service environment components (i.e. sensory, functional, social, natural and cultural components of experienscape) by incorporating diverse theories and concepts that explain cognitive, affective and conative reactions of different stakeholders to an experience environment. Additionally, the current study recommends attention to human-centric outcomes such as transformation, subjective well-being, subjective happiness and quality of life, which were completely overlooked in previous servicescape research.

Whose Quality of Life is it Anyway? Why Not Ask Seniors to Tell US about IT?

2000 ◽  
Vol 50 (4) ◽  
pp. 361-383 ◽  
Author(s):  
Prem S. Fry
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Well Being ◽  
Qualitative Approach ◽  
External Factors ◽  
Future Research ◽  
Elderly Persons ◽  
Qualitative And Quantitative ◽  
Depth Interviews

Three hundred and thirty-one older adults participated in a study designed to examine their perceptions of what constitutes a reasonable quality of life. Participants responded to an open-ended questionnaire in which they were asked to state their priorities, preferences, aspirations, and concerns about their present and future quality of life. Responses were subjected to a principal components factor analysis which yielded four factors: 1) respondents' demands for specific guarantees; 2) respondents' aspirations and expectations for future quality of life; 3) fears and anxieties; and 4) external factors presenting a threat to quality of life. These factors accounted for 15 percent, 12 percent, 9.2 percent, and 7.1 percent, respectively, of the total variance. Additionally, data obtained from in-depth interviews with thirty-seven older adults were analyzed using a qualitative approach. Contrary to stereotypic notions that elderly persons are frail, vulnerable, and resigned to deteriorating conditions of well-being in late life, the results of both the qualitative and quantitative components of the study showed the majority of respondents as having clear demands for autonomy, control, and independence in making decisions, including the decision to terminate life. Implications are discussed in terms of future research on quality of life of older adults.

Sign in / Sign up

Export Citation Format

Share Document