“It’s Going to be Different for Everyone”: Negotiating Quality of Life and Care Priorities Within Care Convoys

2021 ◽  
pp. 089826432110523
Author(s):  
Elisabeth O. Burgess ◽  
Candace L. Kemp ◽  
Alexis A. Bender
Keyword(s):  
Quality Of Life ◽  
Assisted Living ◽  
Qualitative Data ◽  
Quality Care ◽  
Theory Analysis ◽  
Multiple Viewpoints ◽  
Age In Place ◽  
Care Partners ◽  
Working Out

Objective: The overall goal of this analysis was to learn about residents’ quality of life and quality of care in assisted living over time and from multiple viewpoints within support networks. Method: This grounded theory analysis examined qualitative data collected from 50 residents and 169 of their care network members followed over two consecutive 2-year periods in 8 diverse settings. Results: Quality involved a dynamic process of “negotiating priorities,” which refers to working out what is most important for residents’ quality of life and care. Resident and care partner priorities were not always consistent or shared, in part because quality is personal, subjective, dynamic, and situational. Discussion: Communication and collaboration among formal and informal care partners are vital to residents’ ability to age in place with a high quality of life and quality care.

scholarly journals Meaningful Engagement Among Assisted Living Residents With Dementia: Successful Approaches

2021 ◽  
pp. 073346482199686
Author(s):  
Candace L. Kemp ◽  
Alexis A. Bender ◽  
Joy Ciofi ◽  
Jennifer Craft Morgan ◽  
Elisabeth O. Burgess ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Assisted Living ◽  
Care Partners ◽  
Meaningful Engagement ◽  
Care Practices ◽  
The Moment ◽  
Record Review

Meaningful engagement is an important dimension of quality of life and care for persons living with dementia, including the growing number who reside in assisted living communities. This report presents preliminary findings from an ongoing qualitative study aimed at identifying best care practices to create and maintain meaningful engagement among persons with dementia. Over a 1-year period, we conducted interviews, residents’ record review, and participant observations in four diverse care communities. Our analysis identified four approaches that successfully promote meaningful engagement: (a) knowing the person, (b) connecting with and meeting people where they are, (c) being in the moment, and (d) viewing all encounters as opportunity. Incorporation of these approaches in care routines and adoption by all care partners can promote meaningful engagement, including during crises such as COVID-19.

scholarly journals MEANINGFUL ENGAGEMENT AND QUALITY OF LIFE AMONG ASSISTED LIVING RESIDENTS WITH DEMENTIA: EMERGENT FINDINGS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S943-S944
Author(s):  
Joy Ciofi ◽  
Candace L Kemp ◽  
Alexis A Bender ◽  
Elisabeth O Burgess ◽  
Jennifer C Morgan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Assisted Living ◽  
Personal Characteristics ◽  
Future Research ◽  
Structured Interviews ◽  
Care Partners ◽  
Meaningful Engagement ◽  
Physical Abilities ◽  
Community Staff

Abstract This poster provides an overview of the aims, methods, and emergent findings from an ongoing five-year NIA-funded project (R01AG062310) examining meaningful engagement and quality of life among assisted living (AL) residents with dementia. The overall goal of this project is to determine how opportunities for meaningful engagement can best be recognized, created, and maintained for individuals with different dementia types and varying levels of functional ability. Guided by grounded theory, this qualitative study will involve 12 diverse AL communities in and around Atlanta, Georgia, USA. Presently, our interdisciplinary team is collecting data in four communities using ethnographic observations, semi-structured interviews, and resident record review. We are studying daily life in each community, following 30 resident participants, and actively recruiting and interviewing their formal and informal care partners. Based on ongoing analysis, we offer key emergent findings. First, meaningful engagement is highly individualized and dynamic. Differing personal interests, along with wide variations in cognitive and physical abilities, can present challenges for AL community staff and other care partners when trying to recognize what constitutes meaningful engagement for residents. Second, multiple complex factors interplay to shape the experience of meaningful engagement among persons living with dementia, such as personal characteristics, care partner background and training, AL community design and philosophy, and state/corporate regulations. Finally, flexibility and ‘meeting the resident where they are at’ appear to be critical to identifying and fostering meaningful engagement for persons living with dementia. We discuss the implications of these preliminary findings for translation, dissemination, and future research.

scholarly journals Assisted Living Administrators' Views of Palliative Care

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 906-906
Author(s):  
Elise Abken ◽  
Molly Perkins ◽  
Alexis Bender
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Assisted Living ◽  
Spiritual Needs ◽  
Structured Interviews ◽  
Age In Place ◽  
Care Access ◽  
Access And Quality ◽  
Using Data

Abstract As many older adults with progressive chronic conditions choose to age-in-place in assisted living (AL) communities, external healthcare workers (e.g., those who provide palliative care) increasingly support AL staff in caring for residents with complex health needs. Palliative care is a branch of healthcare dedicated to preserving quality of life by attending to the physical, mental, and spiritual needs of individuals with chronic, life-threatening diseases and is well suited to manage AL residents’ progressive medical conditions. However, AL residents and their care partners often face barriers to accessing palliative care. Using data from a larger 5-year NIA-funded study, we examined AL administrator knowledge and use of palliative care in seven AL communities around the Atlanta metropolitan area that were racially, ethnically, and socioeconomically diverse. Findings from thematic analysis of semi-structured interviews with 16 administrators indicated that 15 of 16 administrators were familiar with palliative care. A minority of administrators clearly distinguished palliative care from hospice services and conceptualized it as a “bridge” to hospice services. Administrators emphasized how palliative care assists communities in caring for health concerns in-house rather than having to send residents to the hospital. Despite their positive view of palliative care, administrators described infrequent use of palliative services in their communities. Findings show that although none of the AL communities integrate palliative care with their service offerings, AL administrators see value in palliative care for their residents. We provide recommendations for improving palliative care access and quality of life for AL residents at end of life.

scholarly journals How Singing can Help People With Dementia and Their Family Care-Partners: A Mixed Studies Systematic Review With Narrative Synthesis, Thematic Synthesis, and Meta-Integration

2021 ◽  
Vol 12 ◽  
Author(s):  
Zara Thompson ◽  
Felicity A. Baker ◽  
Jeanette Tamplin ◽  
Imogen N. Clark
Keyword(s):  
Quality Of Life ◽  
Quantitative Data ◽  
Qualitative Data ◽  
Well Being ◽  
Narrative Synthesis ◽  
Thematic Synthesis ◽  
People With Dementia ◽  
Care Partners ◽  
The Impact

Background: Recent research on the efficacy of music-based interventions for people with dementia have focused on specific outcomes and methods, and singing has been noted as a particularly beneficial activity. However, due to heterogeneity of research methods, there is a need to synthesise the findings of both quantitative and qualitative research in order to better understand both the impact and potential mechanisms of singing for people in this population.Method: This systematic review included quantitative, qualitative and mixed-methods studies, and analysed these using a systematic mixed-studies synthesis (with a results-based convergent approach). Quantitative and qualitative data were initially synthesised using a narrative synthesis and thematic synthesis method, respectively, before a final meta-integration method was used to synthesise common themes across the two data forms.Results: Electronic and hand search strategies revealed 1,815 relevant studies, 40 of which met the full eligibility criteria. Narrative synthesis of quantitative data revealed six key outcome areas (quality of life; psychological well-being; cognition; engagement; activities of daily living; care-partner well-being), and thematic synthesis of qualitative data generated seven themes relating to the impact and mechanisms of singing (pragmatic elements; social benefits; mood; identity; memory; flow-on effects; and relationships). Meta-integration identified four key areas relating to the impact and mechanisms of singing for people with dementia and care-partners: psychological well-being, quality of life, cognition, and care-partner well-being.Conclusion: Results from the syntheses suggest that singing can positively impact the lives of people with dementia and their care-partners, although due to heterogeneity of study design and outcome measures, it is difficult to draw conclusions based on quantitative data alone. Qualitative data provides further context and insights from participant perspectives, and when integrated with quantitative data, contextual factors that may influence the benefits that participants experience from singing are revealed.

scholarly journals Beneficial Effects of Remote Medical Care for Patients with Hereditary Hemorrhagic Telangiectasia during the COVID-19 Pandemic

2021 ◽  
Vol 10 (11) ◽  
pp. 2311
Author(s):  
Eleonora Gaetani ◽  
Fabiana Agostini ◽  
Luigi Di Martino ◽  
Denis Occhipinti ◽  
Giulio Cesare Passali ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Emergency Room ◽  
Medical Care ◽  
Hereditary Hemorrhagic Telangiectasia ◽  
Iron Supplementation ◽  
Quality Care ◽  
Psychological Status ◽  
Blood Transfusions ◽  
Emergency Room Visits

Background: Hereditary hemorrhagic telangiectasia (HHT) needs high-quality care and multidisciplinary management. During the COVID-19 pandemic, most non-urgent clinical activities for HHT outpatients were suspended. We conducted an analytical observational cohort study to evaluate whether medical and psychological support, provided through remote consultation during the COVID-19 pandemic, could reduce the complications of HHT. Methods: A structured regimen of remote consultations, conducted by either video-calls, telephone calls, or e-mails, was provided by a multidisciplinary group of physicians to a set of patients of our HHT center. The outcomes considered were: number of emergency room visits/hospitalizations, need of blood transfusions, need of iron supplementation, worsening of epistaxis, and psychological status. Results: The study included 45 patients who received remote assistance for a total of eight months. During this period, 9 patients required emergency room visits, 6 needed blood transfusions, and 24 needed iron supplementation. This was not different from what was registered among the same 45 patients in the same period of the previous year. Remote care also resulted in better management of epistaxis and improved quality of life, with the mean epistaxis severity score and the Euro-Quality of Life-Visual Analogue Scale that were significantly better at the end than at the beginning of the study. Discussion: Remote medical care might be a valid support for HHT subjects during periods of suspended outpatient surveillance, like the COVID-19 pandemic.

scholarly journals Challenges Related to Informal Care Partners’ Involvement in End-of-Life-Care in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 16-17
Author(s):  
Molly Perkins ◽  
Ann Vandenberg ◽  
Candace Kemp ◽  
Mary Ball ◽  
Joanna Jungerman ◽  
...  
Keyword(s):  
End Of Life ◽  
Informal Care ◽  
Caregiver Burden ◽  
Assisted Living ◽  
End Of Life Care ◽  
Life Care ◽  
Term Care ◽  
Care Partners ◽  
Relational Factors

Abstract Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners’ involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners’ own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners’ awareness (or lack thereof) of residents’ impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as “negotiating risks.” Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.

scholarly journals “Is this the GVHD?” A qualitative exploration of quality of life issues in individuals with graft-versus-host disease following allogeneic stem cell transplant and their experiences of a specialist multidisciplinary bone marrow transplant service

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Isabella de Vere Hunt ◽  
James M. Kilgour ◽  
Robert Danby ◽  
Andy Peniket ◽  
Rubeta N. Matin
Keyword(s):  
Quality Of Life ◽  
Bone Marrow ◽  
Stem Cell ◽  
Stem Cell Transplantation ◽  
Graft Versus Host Disease ◽  
Allogeneic Stem Cell Transplantation ◽  
Qualitative Data ◽  
Information Provision ◽  
Graft Versus Host

Abstract Background Graft-versus-host disease (GVHD) is a significant cause of morbidity and mortality following allogeneic stem cell transplantation. These patients face unique challenges due to the complexity of GVHD which can affect multiple organ systems, and the toxicity of treatments. Despite the known impact on quality of life (QOL), qualitative data within the bone marrow transplantation (BMT) literature is rare, and there has been no qualitative work exploring patient experience of specialist healthcare provision for GVHD in the United Kingdom. Methods We conducted a primary explorative qualitative study of the experience of QOL issues and multidisciplinary care in patients with chronic GVHD following allogeneic stem cell transplantation. Eight patients were identified using convenience sampling from specialist BMT outpatient clinics. Following consent, patients were interviewed individually via telephone. Transcripts of interviews were analyzed using an inductive thematic approach. Results Mean participant age was 61-years-old (range 45–68), with a mean time post-transplant of 3 years at time of interview (range 3 months–15 years). Five key QOL themes were identified: (1) ‘Restricted as to what I can do’; (2) Troubling symptoms—‘you can sort of get GVHD anywhere’; (3) Confusion/uncertainty over GVHD symptoms—‘Is this the GVHD?’; (4) Unpredictable course and uncertainty about the future; and (5) Adapting to the sick role. In addition, four themes related to experience of service provision were identified: (1) personal care and close relationship with BMT nurses; (2) efficiency versus long waits—‘On the case straight away’; (3) information provision—‘went into it with a bit of a rosy view’; and (4) the role of support groups. Conclusions These qualitative data reflect the heterogeneity of experiences of the GVHD patient population, reflecting the need for a flexible and nuanced approach to patient care with emphasis on comprehensive information provision. We have identified the key role that BMT specialist nurses within the multidisciplinary team play in supporting patients. We advocate future research should focus on ways to meet the complex needs of this patient group and ensure that the personal care and close relationships are not lost in service redesigns embracing remote consultations.

System for Assistance on Bath of Bedridden Elderly People

2014 ◽  
Author(s):  
Karolina Bezerra ◽  
José Machado ◽  
Vitor Carvalho ◽  
Filomena Soares ◽  
Bruno Silva ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Elderly People ◽  
Conceptual Design ◽  
Assisted Living ◽  
Ambient Assisted Living ◽  
The Other ◽  
Mechatronic System ◽  
Rehabilitation Centers ◽  
Aged Person

From Ambient Assisted Living (AAL) perspective it is important to have information regarding the type of care needed by bedridden elderly people (BEP) living in their homes, in order to support independence, autonomy and maximize their quality of life. Some basic tasks as eating, taking a bath and the hygiene cares may be difficult to execute, regarding that almost always the main caregiver is the other element of the couple (husband or wife). Following this trend, the development of mechatronic devices is of upmost importance in creating solutions to facilitate these tasks. This paper presents the conceptual design of a mechatronic system especially devoted to the assistance during the bath of BEP. Issues as reducing the number of caregivers to only one to assist the bath and reducing the system’s handling complexity (because most of the time it will be used by an aged person) are considered. Visits to rehabilitation centers and hospitals, and respective working meetings, are considered in the development of the proposed mechatronic system.

scholarly journals Down Syndrome and Quality of Life: A Case Report

2015 ◽  
Vol 3 (2) ◽  
pp. 112-114
Author(s):  
Hilary L. Schroeder ◽  
Marianinha Joanes ◽  
Andre Small ◽  
Raghu Maramraj,
Keyword(s):  
Quality Of Life ◽  
Down Syndrome ◽  
Early Onset ◽  
Quality Care ◽  
Well Being ◽  
Cardiac Complications ◽  
African American Female ◽  
Crucial Component ◽  
Patient’S History

  Background: Quality of life is considered a crucial component to the well-being of patients with Down syndrome. The strength of quality care through stable social and psychological interactions has built a framework for a positive well-being for patients with Down syndrome, improving their quality of life. Case: A 55-year-old African American female with a history of Down syndrome, congenital heart disease, and newly-diagnosed early onset Alzheimer’s disease presented with an arm contusion resulting from regular caretaking. The patient’s history was reviewed, and the complexity of her condition was discovered. While a subset of Down syndrome patients have cardiac complications and others have early-onset Alzheimer’s, our patient had both. We believe this complicated her condition. After the diagnosis of Alzheimer’s was made, the caregivers noticed a significant decline in her ability to communicate and continue day-to-day activities. Despite the decline in functions, a positive mood was apparent. Conclusion: Multiple medical interventions, along with strong family support, positively contributed to the patient’s quality of life. Therapies targeting cognition could result in the maintenance of quality of life and, ultimately, lower health care costs.

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