scholarly journals Development of a Caregivers’ Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study

10.2196/13280 ◽  
2019 ◽  
Vol 8 (8) ◽  
pp. 13280
Author(s):  
Estefania Guisado-Fernandez ◽  
Brian Caulfield ◽  
Paula Alexandra Silva ◽  
Laura Mackey ◽  
David Singleton ◽  
...  
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Home Care ◽  
Informal Caregivers ◽  
Intervention Group ◽  
Well Being ◽  
Mixed Methods Study ◽  
Care Plan ◽  
Connected Health ◽  
At Home

Background Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and Aging in Place, and it has been increasingly considered by researchers and health care providers as a method for dementia home care management. Objective This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs at home. Methods This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 months during which they will continue with their traditional care plan, but in addition, the intervention group will receive the CH package for their use at home during 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver’s and PwD’s emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. Results This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management–based strategies, and enhancing caregivers’ involvement in the management of health care at home for PwDs. Conclusions We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs’ care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers. International Registered Report Identifier (IRRID) DERR1-10.2196/13280

scholarly journals Development of a Caregivers’ Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study (Preprint)

2019 ◽  
Author(s):  
Estefania Guisado-Fernandez ◽  
Brian Caulfield ◽  
Paula Alexandra Silva ◽  
Laura Mackey ◽  
David Singleton ◽  
...  
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Home Care ◽  
Informal Caregivers ◽  
Intervention Group ◽  
Well Being ◽  
Mixed Methods Study ◽  
Care Plan ◽  
Connected Health ◽  
At Home

BACKGROUND Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and Aging in Place, and it has been increasingly considered by researchers and health care providers as a method for dementia home care management. OBJECTIVE This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs at home. METHODS This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 months during which they will continue with their traditional care plan, but in addition, the intervention group will receive the CH package for their use at home during 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver’s and PwD’s emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. RESULTS This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management–based strategies, and enhancing caregivers’ involvement in the management of health care at home for PwDs. CONCLUSIONS We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs’ care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID) DERR1-10.2196/13280

scholarly journals A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study (Preprint)

2019 ◽  
Author(s):  
Estefania Guisado-Fernandez ◽  
Catherine Blake ◽  
Laura Mackey ◽  
Paula Alexandra Silva ◽  
Dermot Power ◽  
...  
Keyword(s):  
Home Care ◽  
Functional Status ◽  
Disease Progression ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Well Being ◽  
People With Dementia ◽  
Mental Well Being ◽  
At Home

BACKGROUND Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person’s memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being. OBJECTIVE This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD–informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations. METHODS The PwD–informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD–informal caregivers, using international and standardized validated questionnaires. Participants’ demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant. RESULTS There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform. CONCLUSIONS The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD–informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population. INTERNATIONAL REGISTERED REPORT RR2-10.2196/13280

scholarly journals Perceived Needs Among Asylum Seekers in Sweden: A Mixed Methods Study

2020 ◽  
Vol 17 (14) ◽  
pp. 4983
Author(s):  
Karin Hugelius ◽  
Maya Semrau ◽  
Marie Holmefur
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Asylum Seekers ◽  
Health Care Services ◽  
Health Care Systems ◽  
Well Being ◽  
Mixed Methods Study ◽  
Cross Sectional ◽  
Humanitarian Emergency ◽  
Perceived Needs

The health and well-being of asylum seekers in high-income countries is a concern from both individual and community perspectives. This study aims to describe the perceived needs of adult asylum seekers in Sweden. A mixed methods study was conducted that combined a non-randomized descriptive cross-sectional assessment of perceived serious needs using the Humanitarian Emergency Settings Perceived Needs Scale (HESPER) Web with 85 adult asylum seekers and focus group discussions with 14 adult asylum seekers in Sweden. Descriptive and comparative statistics were used for the quantitative part, and thematic analysis for the qualitative part. The total number of perceived serious needs reported by respondents ranged from zero to 13 needs per person with a mean of four needs (SD 2.71). The most commonly perceived serious needs were related to income or livelihood, separation from loved ones, being displaced from home, distress, and concerns about accessing adequate health care services. Many of the perceived needs appeared to be related to experiences of being dependent, in limbo, and vulnerable. Addressing people’s current perceived needs can contribute to resilience and well-being and therefore should be considered in health care systems that cater to immigrants.

scholarly journals Feasibility of a Web-Based Psychoeducation Course and Experiences of Caregivers Living With a Person With Schizophrenia Spectrum Disorder: Mixed Methods Study

10.2196/25480 ◽  
2021 ◽  
Vol 23 (4) ◽  
pp. e25480
Author(s):  
Anna Laine ◽  
Minna Anttila ◽  
Heli Hirvonen ◽  
Maritta Välimäki
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Care Professionals ◽  
Well Being ◽  
Mixed Methods Study ◽  
Schizophrenia Spectrum Disorders ◽  
Web Based ◽  
Course Content ◽  
Schizophrenia Spectrum ◽  
The Web

Background Schizophrenia is a severe mental illness that burdens both patients and caregivers. Objective The aim of this study is to examine the feasibility of a web-based psychoeducation course targeted at caregivers of persons with schizophrenia spectrum disorders (SSDs) and to describe their experiences of living with a person with SSD based on the material caregivers produced during the web-based course. Methods A convergent, parallel, mixed methods study design was used. First, caregivers’ engagement in the course was evaluated quantitatively. Second, the overview of the course feedback was evaluated using quantitative and qualitative methods. Third, the experiences of being a caregiver to a person with SSD were analyzed qualitatively with the thematic analysis of the writings caregivers produced during the web-based course. Results A total of 30 caregivers participated in the study and a web-based psychoeducation course. Less than two-thirds (18/30, 60%) completed the course. Content was most often logged for the first module, Orientation (3465 log-ins), and the lowest number of log-ins was recorded for the Daily life module (1061 log-ins). Feedback on the course varied; over half (10/17, 59%) of the caregivers considered the content to be very good or good, about half (9/17, 53%) considered the website layout to be good, only 6% (1/17) felt that the usability of the website was poor, and no one felt that it was very poor. From the reported experiences of being a caregiver to a person with SSD, 3 themes were formed: the caregiver’s own well-being, relationship with the person with SSD, and experience of health care services. Conclusions The web-based psychoeducation course for caregivers living with a person with SSD seems to be especially suitable for those who have little experience as a caregiver. In the future, more planning and the consideration of aspects related to the needs of specific target groups, course content, practical arrangements, and scheduling should be taken into account. In addition, although caregivers can improve their own well-being in different ways, they need regular support and cooperation from health care professionals.

scholarly journals A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study

JMIR Aging ◽  
10.2196/15600 ◽  
2020 ◽  
Vol 3 (2) ◽  
pp. e15600
Author(s):  
Estefania Guisado-Fernandez ◽  
Catherine Blake ◽  
Laura Mackey ◽  
Paula Alexandra Silva ◽  
Dermot Power ◽  
...  
Keyword(s):  
Home Care ◽  
Functional Status ◽  
Disease Progression ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Well Being ◽  
People With Dementia ◽  
Mental Well Being ◽  
At Home

Background Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person’s memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being. Objective This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD–informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations. Methods The PwD–informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD–informal caregivers, using international and standardized validated questionnaires. Participants’ demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant. Results There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform. Conclusions The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD–informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population. International Registered Report Identifier (IRRID) RR2-10.2196/13280

scholarly journals Feasibility of a Web-Based Psychoeducation Course and Experiences of Caregivers Living With a Person With Schizophrenia Spectrum Disorder: Mixed Methods Study (Preprint)

2020 ◽  
Author(s):  
Anna Laine ◽  
Minna Anttila ◽  
Heli Hirvonen ◽  
Maritta Välimäki
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Care Professionals ◽  
Well Being ◽  
Mixed Methods Study ◽  
Schizophrenia Spectrum Disorders ◽  
Web Based ◽  
Course Content ◽  
Schizophrenia Spectrum ◽  
The Web

BACKGROUND Schizophrenia is a severe mental illness that burdens both patients and caregivers. OBJECTIVE The aim of this study is to examine the feasibility of a web-based psychoeducation course targeted at caregivers of persons with schizophrenia spectrum disorders (SSDs) and to describe their experiences of living with a person with SSD based on the material caregivers produced during the web-based course. METHODS A convergent, parallel, mixed methods study design was used. First, caregivers’ engagement in the course was evaluated quantitatively. Second, the overview of the course feedback was evaluated using quantitative and qualitative methods. Third, the experiences of being a caregiver to a person with SSD were analyzed qualitatively with the thematic analysis of the writings caregivers produced during the web-based course. RESULTS A total of 30 caregivers participated in the study and a web-based psychoeducation course. Less than two-thirds (18/30, 60%) completed the course. Content was most often logged for the first module, <i>Orientation</i> (3465 log-ins), and the lowest number of log-ins was recorded for the <i>Daily life</i> module (1061 log-ins). Feedback on the course varied; over half (10/17, 59%) of the caregivers considered the content to be very good or good, about half (9/17, 53%) considered the website layout to be good, only 6% (1/17) felt that the usability of the website was poor, and no one felt that it was very poor. From the reported experiences of being a caregiver to a person with SSD, 3 themes were formed: the caregiver’s own well-being, relationship with the person with SSD, and experience of health care services. CONCLUSIONS The web-based psychoeducation course for caregivers living with a person with SSD seems to be especially suitable for those who have little experience as a caregiver. In the future, more planning and the consideration of aspects related to the needs of specific target groups, course content, practical arrangements, and scheduling should be taken into account. In addition, although caregivers can improve their own well-being in different ways, they need regular support and cooperation from health care professionals. CLINICALTRIAL

Guilhème Pérodeau et Denyse Côté (Eds.). Le virage ambulatoire : Défis et enjeux. Sainte-Foy, QC: Presses de l'Université du Québec. 2002.

2004 ◽  
Vol 23 (2) ◽  
pp. 191-192
Author(s):  
Aline Vézina
Keyword(s):  
Health Care ◽  
Quality Of Care ◽  
Home Care ◽  
Family Member ◽  
Informal Caregivers ◽  
Nursing Personnel ◽  
Negative Consequences ◽  
The Core ◽  
Care At Home

ABSTRACTThis book is comprised of three sections: the problems and consequences of the push for more de-institutionalized health care, the issues that crop up in this context, and the perceptions of the caregiver. At the core of this text are the two groups of women who are most present in this new context: the informal caregivers or family helpers and the nurses. Three conclusions become evident. Firstly, the push for home care has many negative consequences, especially for women. Secondly, although the help of a family member makes possible the dispensation of care at home, something wished for by most patients, it also entails an increase in, and professionalization of, the tasks for the caregiving family member. Finally, using the home as the place of care also has the consequence of increasing the tasks of nursing personnel, to the point where there is a perception that the quality of care has decreased.

scholarly journals Health Care Providers’ Knowledge of HPV Vaccination, Barriers, and Strategies in a State With Low HPV Vaccine Receipt: Mixed-Methods Study

JMIR Cancer ◽  
2017 ◽  
Vol 3 (2) ◽  
pp. e12 ◽  
Author(s):  
Echo L Warner ◽  
Qian Ding ◽  
Lisa Pappas ◽  
Julia Bodson ◽  
Brynn Fowler ◽  
...  
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Care Providers ◽  
Hpv Vaccine ◽  
Hpv Vaccination ◽  
Mixed Methods Study ◽  
Care Providers ◽  
Vaccination Barriers

scholarly journals Companion Animal Type and Level of Engagement Matter: A Mixed-Methods Study Examining Links between Companion Animal Guardianship, Loneliness and Well-Being during the COVID-19 Pandemic

Animals ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. 2349
Author(s):  
Heather Clements ◽  
Stephanie Valentin ◽  
Nicholas Jenkins ◽  
Jean Rankin ◽  
Nancy R. Gee ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Quantitative Data ◽  
Online Survey ◽  
Qualitative Data ◽  
Companion Animals ◽  
Well Being ◽  
Companion Animal ◽  
Mixed Methods Study ◽  
The Impact ◽  
Mental Well Being

To reduce the spread of COVID-19, countries worldwide placed limitations on social interaction, which is anticipated to have severe psychological consequences. Although findings are inconsistent, prior research has suggested that companion animals may positively influence human well-being and reduce loneliness. In the context of COVID-19, this has important implications, as companion animal guardians may be less negatively affected by the pandemic. The primary aim of this research was to investigate the influence of companion animals on mental well-being and loneliness during the pandemic, with specific interest in the role of ornamental fishes. A mixed-methods study was conducted, using an international sample. Quantitative data were collected via an online survey (n = 1199) and analysed using robust hierarchical multiple regression analyses; the influence of level of engagement with companion animals was examined for dogs, cats and ornamental fishes. There was no evidence that companion animal guardianship was associated with loneliness and mental well-being during the pandemic but spending more time engaging physically or socially with dogs (and to a lesser extent cats) was generally associated with poorer outcomes. Qualitative data were collected through open-ended survey responses (n = 757) and semi-structured interviews (n = 25) and analysed using reflexive thematic analysis. Two themes were developed—one related to companion animals as providers of social and emotional support, and the other to companion animals as providers of purpose and perspective. Concerns regarding the impact of the pandemic on animal welfare were also identified. Compared to other animal types, more participants expressed indifference regarding the impact of their fishes on their well-being during the pandemic, possibly because fishes cannot provide comfort via physical touch. The findings of this study reflect the wider field of human–animal interaction; although qualitative data suggest guardians believe their companion animals are a positive influence in their lives, there is little convincing quantitative data to support these beliefs. This highlights the need to refine theories regarding which aspects of companion animal guardianship may influence human well-being; the findings from this research may be useful in the refinement of such theories.

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