scholarly journals Refining a Digital Therapeutic Platform for Home Care Agencies in Dementia Care: Use of Focus Groups to Elicit Stakeholder Feedback (Preprint)

JMIR Aging ◽  
10.2196/32516 ◽  
2021 ◽  
Author(s):  
Aaron M Gilson ◽  
Michele C Gassman ◽  
Debby Dodds ◽  
Robin Lombardo ◽  
James H Ford II ◽  
...  
Keyword(s):  
Home Care ◽  
Focus Groups ◽  
Dementia Care ◽  
Therapeutic Platform

Focus Groups to Inform Further Development of a Digital Therapeutic Platform for Home Care Agencies in Dementia Care (Preprint)

2021 ◽  
Author(s):  
Aaron M Gilson ◽  
Michele C Gassman ◽  
Debby Dodds ◽  
Robin Lombardo ◽  
James H Ford II ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Home Care ◽  
Focus Groups ◽  
Informal Caregivers ◽  
Dementia Care ◽  
Formal Caregivers ◽  
Care Services ◽  
Further Development ◽  
Care Agency ◽  
Home Care Agency

BACKGROUND Persons living with dementia (PLWD) require increasing levels of care and the care model for PLWD has evolved. The Centers for Medicare & Medicaid Services is transitioning long-term care services from institutional care to home or community-based services, including reimbursement for non-clinical services. Although home care companies are positioned to handle this transition, they need innovative solutions to address the special challenges posed by caring for PLWD. To live at home longer, PLWD require support from formal caregivers (i.e., paid professionals), who often lack knowledge of PLWDs’ personal histories and have high turnover, and/or informal caregivers (e.g., family or friends), who may have difficulty coping with behavioral and psychological symptoms of dementia. The Generation Connect (GC) platform was developed to support PLWD and their formal and informal caregivers. In preliminary studies, the GC platform improved moods for PLWD and influenced caregiver satisfaction. To enhance platform effectiveness, Generation Connect received a National Institutes of Health Small Business Innovation Research (NIH SBIR) grant to improve clinical outcomes, reduce healthcare costs, and lower out-of-pocket costs for PLWD who receive care through home care agencies. OBJECTIVE To conduct stakeholder focus groups to develop a better understanding about existing processes, needs, barriers, and goals for the use of the GC platform by home care agencies and formal and informal caregivers. METHODS A series of focus groups were conducted with 1) home care agency corporate leadership, 2) home care agency franchise owners, 3) home care agency formal caregivers, and 4) informal caregivers of PLWD. The qualitative approach allowed for the unrestricted generation of ideas that would best inform the development of the GC platform developers to enable home care providers to differentiate their dementia care services, involve informal caregivers, improve formal caregiver well-being, and extend PLWD ability to age in place. Using the Technology-Enabled Caregiving in the Home framework, an inductive and iterative content analysis was utilized to identify thematic categories from the transcripts. RESULTS A total of 39 participants participated across the six stakeholder focus groups. Five overarching themes were identified: (1) Technology-Related; (2) Care Services; (3) Data, Documentation, Outcomes; (4) Cost, Finance, Resources; and (5) Resources for Caregivers. Within each theme, the most frequent sub-themes were identified. Exemplar stakeholder group statements were compiled to provide support for each of the identified themes. CONCLUSIONS Focus group results will inform further development of the GC platform to reduce the burden of caregiving for PLWD, evaluate changes in cognition, preserve functional independence, and promote engagement between PLWD and caregivers. The next step is to evaluate the effectiveness of the GC platform in a NIH SBIR Phase 2 clinical trial to assess its efficacy of evidence-based interventions and market viability. CLINICALTRIAL This Phase 1 study did not meet the criteria for an Applicable Clinical Trial and therefore it was not registered on clinicaltrials.gov.

How can we ensure the success of specialised palliative home-care? A qualitative study (ELSAH) identifying key issues from the perspective of patients, relatives and health professionals

2021 ◽  
pp. 026921632110265
Author(s):  
Hannah Seipp ◽  
Jörg Haasenritter ◽  
Michaela Hach ◽  
Dorothée Becker ◽  
Lisa-R Ulrich ◽  
...  
Keyword(s):  
Home Care ◽  
Focus Groups ◽  
Health Professionals ◽  
Care Delivery ◽  
Death And Dying ◽  
Theory Approach ◽  
Palliative Home Care ◽  
Palliative Care Teams ◽  
Key Issues

Background: Specialised palliative home-care supports patients with life-limiting diseases in their familiar surroundings. The number of palliative care teams and patients being cared for is increasing worldwide. To assess and improve quality, it is needed to understand, how specialised palliative home-care can be provided successfully. For this purpose we examined the views of all involved stakeholders. Aim: To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care. Design: We used a qualitative design based on participant observations, interviews and focus groups following the principles of a Grounded Theory approach. Setting/participants: All specialised palliative home-care teams ( n = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations ( n = 5), and interviewed patients ( n = 14), relatives ( n = 14) and health professionals working in or collaborating with specialised palliative home-care ( n = 30). We also conducted focus groups ( n = 4) with health professionals including a member check. Results: Successful specialised palliative home-care needs to treat complex symptoms, and provide comprehensive care including organisation of care, involving relatives and addressing issues of death and dying. Sense of security for patients and relatives is key to enable care at home. Care delivery preferences include a focus on the quality of relationships, respect for individuality and the facilitation of self-determination. Conclusions: Consideration of the identified key issues can help to ensure successful specialised palliative home-care. Knowledge of these should also be considered when researching and assessing quality of care. Trial registration: German Clinical Trials Register DRKS-ID: DRKS00012421; http://www.germanctr.de .

scholarly journals ENHANCING PERSON-CENTERED DEMENTIA CARE BY NURSING HOME STAFF USING MICROLEARNING: LITTLE MESSAGE WITH A BIG IMPACT

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S3-S3
Author(s):  
Jenny Inker ◽  
Christine J Jensen ◽  
Sonya Barsness
Keyword(s):  
Job Satisfaction ◽  
Nursing Home ◽  
Focus Groups ◽  
Long Term Care ◽  
Dementia Care ◽  
Care Staff ◽  
Training Curriculum ◽  
Term Care ◽  
Online Platform

Abstract Effective training is critical to providing quality care in long-term care environments, where many residents have dementia. Training has been linked to positive resident care outcomes and improved job satisfaction of staff. The aim of this study was to develop, pilot, and evaluate a Microlearning training curriculum, using short (5-10 minute) “bursts” of training available through an online platform on demand (i.e. 24/7). The expected outcomes were to improve staff knowledge, attitudes, and skills regarding person-centered dementia care and to increase job satisfaction. Researchers translated the Centers for Medicare and Medicaid Hand-in-Hand training curriculum into 52 weekly Microlearning lessons delivered via an online platform (accessible by computer, IPad or smart phone) followed by a short quiz. Using pre- and post-tests, nine focus groups, and fourteen telephone interviews, the researchers engaged with a convenience sample of staff (N = 244) working at all levels from direct care to leadership in nine nursing homes in Virginia. Pre- and post-tests comprised items from the Dementia Attitudes Scale and the Nursing Home Nurse Aide Job Satisfaction Scale. Results from a between subjects t-test demonstrated significant improvements in attitudes to people with dementia. Focus groups and interviews revealed high satisfaction with the training with a significant majority agreeing it was a helpful way to learn and that they were able to apply what they had learned to caring for residents. This pilot demonstrates a promising new practice for training long-term care staff. Further research using a control group receiving usual training is indicated.

scholarly journals The African Immigrant Memory Loss Project: A University-Community Partnership

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 332-332
Author(s):  
Manka Nkimbeng ◽  
Hayley McCarron ◽  
Gabriela Bustamante ◽  
Wynfred Russell ◽  
Tetyana Shippee ◽  
...  
Keyword(s):  
Focus Groups ◽  
Memory Loss ◽  
African Immigrants ◽  
Advisory Board ◽  
Dementia Care ◽  
Immigrant Community ◽  
Care Needs ◽  
Term Care ◽  
African Immigrant ◽  
Dementia Prevalence

Abstract The few studies on dementia prevalence in immigrant communities show that immigrants from diverse racial/ethnic backgrounds have a higher prevalence of dementia compared with their U.S.-born counterparts. However, this body of work is small, resulting in a lack of reliable estimates of dementia prevalence among African immigrants. The AIMLP is a partnership between the African Career, Education, and Resources, Inc. (ACER) and the Families and Long-Term Care Projects (FLTC) of the University of Minnesota School of Public Health. Guided by an advisory board, the goal of this project is to develop culturally informed instruments, and use these to collect data to identify dementia care needs, knowledge, and resources in the African immigrant community. Study implementation started in August 2019, five advisory board meetings have been convened and 2 pilot focus groups have occurred. Twelve individuals participated in the focus groups. The majority (90%) were from Liberia and 60% were over the age of 55. Two participants currently care for a family member with dementia. Preliminary findings reveal a great need for education on dementia, and general lack of awareness on management, and limited access to services/supports. Focus groups will be finalized in March and the study survey will be developed and administered in the summer. These survey findings will be available and presented at the conference in November 2020. This is the first project to identify the extent of dementia care needs and resources among African immigrants; which will inform interventions for this population.

scholarly journals EXPLORING THE CRITICAL CONTRIBUTIONS OF ARTS-BASED APPROACHES IN RURAL DEMENTIA CARE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S399-S399
Author(s):  
Rachel Herron
Keyword(s):  
Pilot Study ◽  
Focus Groups ◽  
Social Care ◽  
Small Town ◽  
Health Sciences ◽  
Dementia Care ◽  
Meaningful Participation ◽  
Health And Social Care ◽  
Rural Places ◽  
Individual Self

Abstract People living with dementia can experience significant barriers to meaningful participation in their communities, particularly in underserviced rural and small-town settings. Drawing on a multi-method pilot study employing observations, diaries, focus groups and interviews in rural Canada, we examine the potential of an innovative dance program developed by Baycrest Health Sciences and Canada’s National Ballet School, to transform the experiences of people living with dementia and the rural places in which they live. Our findings identify moments, processes, and places of transformation throughout the program including moments of individual self-expression; changing interactions with staff, volunteers, and carers; and changing relationships with home and community. We argue that art-based programs can challenge dominant assumptions about people living with dementia and contribute to the creation of more just health and social care in rural places. In doing so, we illustrate the value of critical arts-based approaches to aging in rural places.

Toward Integrating a Common Nursing Data Set in Home Care to Facilitate Monitoring Outcomes Across Settings

2003 ◽  
Vol 11 (2) ◽  
pp. 157-169 ◽  
Author(s):  
Gail Keenan ◽  
Julia Stocker ◽  
Violet Barkauskas ◽  
Marcy Treder ◽  
Crystal Heath
Keyword(s):  
Home Care ◽  
Focus Groups ◽  
Baseline Survey ◽  
Nursing Interventions ◽  
Data Set ◽  
Actual Experience ◽  
Nursing Diagnosis ◽  
Nursing Data ◽  
Research Assistants

The purpose of our research is to identify a realistic subset of North American Nursing Diagnosis Association (NANDA), Nursing Outcome Classification (NOC), and Nursing Interventions Classification (NIC) terms specific to the home care (HC) setting. A subset of 89 NOC outcomes were identified for study in HC through a baseline survey. Three research assistants then observed the care of 258 patients to whom the 89 NOC outcomes applied and recorded the associated NANDA and NIC terms. Follow-up surveys and focus groups were conducted with the nurses and research assistants. There were 81 different NANDA and 226 NIC labels used to describe study patients’ care. Only 36 of the 89 NOC labels studied were deemed clinically useful for HC. We found that expert opinion about terminology usage before actual experience under practice conditions is unreliable.

Professional care providers in dementia care in eight European countries; their training and involvement in early dementia stage and in home care

Dementia ◽  
2016 ◽  
Vol 15 (5) ◽  
pp. 931-957 ◽  
Author(s):  
Ingalill Rahm Hallberg ◽  
Ester Cabrera ◽  
David Jolley ◽  
Katrin Raamat ◽  
Anna Renom-Guiteras ◽  
...  
Keyword(s):  
Home Care ◽  
Dementia Care ◽  
European Countries ◽  
Care Providers ◽  
Early Dementia ◽  
Professional Care

Intensive Interaction and discourses of personhood: A focus group study with dementia caregivers

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 2018-2037
Author(s):  
Cheyann J Heap ◽  
Emma Wolverson
Keyword(s):  
Focus Groups ◽  
Critical Discourse Analysis ◽  
Residential Care ◽  
Social Power ◽  
Care Home ◽  
Dementia Care ◽  
Focus Group Study ◽  
People With Dementia ◽  
Medical Discourses ◽  
Paid Caregivers

Introduction Societal discourses of dementia are medicalised and dehumanising. This leads to a social problem: the loss of personhood in dementia care. The communication technique Intensive Interaction, however, honours personhood. The current study aimed to explore how paid caregivers of people with dementia enact societal discourses of dementia, with and without the context of Intensive Interaction. This was to explore ways to address the loss of personhood in dementia care. Method Paid caregivers from two residential care homes attended an Intensive Interaction training day. Caregivers participated in focus groups before and after training. Transcripts of the focus groups were analysed with Critical Discourse Analysis, an approach which relates discourse to social power. Results Before Intensive Interaction training, carers accessed medical discourses of loss, non-communication and lack of personhood. ‘Being with’ people with dementia was framed as separate to paid work. After training, caregivers accessed discourses of communication and personhood. Intensive Interaction reframed ‘being with’ people with dementia as part of ‘doing work’. Family caregivers were largely absent from discourses. Care home hierarchies and the industrialisation of care were barriers towards honouring personhood. Conclusions Medical discourses of dementia reinforce a status quo whereby interpersonal interactions are devalued in dementia care, and professional ‘knowledge’ (thereby professional power) is privileged over relationships. Intensive Interaction may enable paid caregivers to access person-centred discourses and related practices. However, this requires support from management, organisational structures, and wider society. More research is needed to identify ways to involve families in residential care and to explore the effects of using Intensive Interaction in practice.

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