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 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 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 QOLP-06. PHENOMENOLOGICAL EXPLORATION OF THE LIVED EXPERIENCE OF QUALITY OF LIFE FOR PATIENTS WITH GLIOBLASTOMA AND THEIR PRIMARY CARE PARTNERS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii175-ii176
Author(s):  
Meghan Tierney ◽  
Cynthia Peden-McAlpine
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Lived Experience ◽  
Family Care ◽  
Phenomenological Approach ◽  
Future Research ◽  
Role Changes ◽  
Care Partners ◽  
The Future

Abstract INTRODUCTION Quality of life (QOL) should be included among the important outcomes of brain tumor treatment. QOL is often reduced to a measure of treatment tolerability, resulting in a lack of understanding of how patients experience this phenomenon. There is also limited knowledge surrounding the meaning of QOL for family care partners. The research (in progress) aims to explore the meaning of lived experience of QOL during treatment for glioblastoma (GBM) for both patients and their primary care partners. It will also examine similarities and differences in QOL perceptions within patient-care partner dyads. METHODS Using a phenomenological approach, this study is recruiting patients receiving treatment for GBM and their care partners. Participants complete a timeline depicting significant events impacting QOL from the time of the patient’s diagnosis to the present. They then complete an individual, unstructured interview describing their experience of QOL. Interviews are recorded and transcribed. The research team reviews and completes a thematic analysis on transcripts. RESULTS Numerous themes are emerging from the data. One theme among patients is: Feeling Uncertain About the Future. Patients discussed feeling uncertain about their prognosis during their course of treatment. They talked about the need to adjust to multiple changes in their lives over time. This uncertainty extended to concern for their QOL in the future. One theme among care partners is: Challenges in Relationship with Spouse. Care partners reported relationship conflict stemming from both personality changes in their spouse and role changes resulting in increased responsibilities for the care partner. CONCLUSION This study is providing insight into the meaning and experience of QOL for patients undergoing treatment for GBM, along with meaning and experience of QOL for their care partners. The findings will have implications for clinical practice and generate insights for future research.

scholarly journals Parents View On In-Home Occupational Therapy Service

2020 ◽  
Vol 2 (2) ◽  
pp. 35-53
Author(s):  
Lilia Osipova
Keyword(s):  
Quality Of Life ◽  
Occupational Therapy ◽  
Special Needs ◽  
Future Research ◽  
Children With Special Needs ◽  
Structured Interviews ◽  
Therapy Services ◽  
Therapy Interventions ◽  
Occupational Therapy Interventions

Home is a significant environment for any child with or without special needs and one of the important environments where occupational therapy is aimed to bring improvement if necessary in terms of quality of life. The current descriptive qualitative study was designed to find out parental perceptions about occupational therapies provided in their own environments with their children with special needs. The participants of the study were five parents whose children with different special needs were getting private in-house occupational therapy services provided by the researcher at the moment of the study. The data for this study was collected through semi-structured interviews. Interviews were designed to understand how parents perceive in-house Occupational Therapy Services.    The findings of the study suggest significant improvements in the quality of life of their children with special needs, thus no one could specifically differ occupational therapy interventions in-home and in other professional settings. It is obvious because of the lack of settings in Armenia with Occupational Therapies and lack of information about the profession in general. Future research is recommended to be conducted between two different groups with Occupational Therapies in-home and other settings, with a larger group and more specific issues. Findings revealed that in-home services are convenient in many different aspects for parents of children with special needs and it should be considered for future practices. 

scholarly journals A Description of Staff-resident Interactions in Assisted Living

2020 ◽  
pp. 105477382097414
Author(s):  
Anju Paudel ◽  
Elizabeth Galik ◽  
Barbara Resnick ◽  
Kelly Doran ◽  
Marie Boltz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Assisted Living ◽  
Descriptive Analysis ◽  
Support Staff ◽  
Future Research ◽  
Interpersonal Distance ◽  
Care Needs ◽  
Daily Care ◽  
Negative Interactions

Positive social and care interactions are vital to understand and successfully accomplish the daily care needs of the residents in assisted living (AL) and optimize their quality of life. The purpose of this study was to explore and describe the staff-resident interactions in AL. This descriptive analysis utilized baseline data in a randomized trial that included 379 residents from 59 AL facilities. The majority of the interactions observed were positive; almost 25% were neutral or negative. Most interactions were care-related (31.9%) or one-on-one (27.4%), occurred with nursing (40.2%) or support staff (e.g., dining aide; 24.6%), and involved close interpersonal distance (64.6%). Future research should focus on the transition of neutral or negative interactions to positive and explore the factors that might influence neutral and negative interactions. Additionally, innovative approaches are needed to optimize interactions amid physical distancing in the context of the COVID-19 pandemic.

A qualitative exploration of family carer’s understandings of people with dementia’s expectations for the future

Dementia ◽  
2020 ◽  
pp. 147130122092954
Author(s):  
Sheridan T Read ◽  
Christine Toye ◽  
Dianne Wynaden
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Family Carers ◽  
Structured Interviews ◽  
Grounded Theory Method ◽  
People With Dementia ◽  
Care Partners ◽  
The Future ◽  
Constant Comparative Analysis

Background There is little evidence that outlines how family carers understand the person with dementia’s perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim This research aimed to explore and describe family carers’ experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia’s expectations for the future and what they believed was important for the person to whom they provided care. Method Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers’ perspectives of the changing nature of decision making during the dementia trajectory. Conclusion Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is ‘person centred’ now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.

Promoting Quality of Life and Safety in Assisted Living: A Survey of State Monitoring and Enforcement Agents

2021 ◽  
pp. 107755872110534
Author(s):  
Brian Kaskie ◽  
Lili Xu ◽  
Seamus Taylor ◽  
Wenhan Zhang ◽  
Kali Thomas ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Assisted Living ◽  
Administrative Support ◽  
State Agency ◽  
Future Research ◽  
State Monitoring ◽  
Monitoring And Enforcement ◽  
Survey Responses ◽  
Operational Processes

Our goal was to learn about monitoring and enforcement of state assisted living (AL) regulations. Using survey responses provided in 2019 from administrative agents across 48 states, we described state agency structures, accounted for operational processes concerning monitoring and enforcement, and documented data collecting and public reporting efforts. In half of the states, oversight of AL was dispersed across three or more agencies, and administrative support varied in terms of staffing and budget allocations. Operations also varied. While most agents could deploy a range of monitoring and enforcement tools, less than half compiled data concerning inspections, violations, and penalties. Less than 10 states shared such information in a manner that was easily accessible to the public. Future research should determine how these varied administrative structures and processes deter or contribute to AL communities’ efforts to implement regulations designed to promote quality of life and provide for the safety of residents.

Exploring Patterns of Advocacy and Well-Being of Parents of Children With Intellectual and Developmental Disabilities

2021 ◽  
Vol 59 (6) ◽  
pp. 459-471
Author(s):  
Kristina Rios ◽  
Janeth Aleman-Tovar ◽  
Meghan Burke
Keyword(s):  
Quality Of Life ◽  
Developmental Disabilities ◽  
Well Being ◽  
Marital Relationships ◽  
Future Research ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Structured Interviews ◽  
Research And Practice

Abstract Advocacy is often an expectation for parents of children with intellectual and developmental disabilities (IDD). However, little is known about how advocacy may impact parent well-being, including stress, family dynamics, and marital relationships. By exploring the effects of advocacy on well-being, interventions can be implemented to support both the advocacy and well-being of parents of children with IDD. To this end, the purpose of the study was to explore the pattern between positive and negative advocacy experiences of parents of children with IDD and the well-being of parents, families, and marriages. Semi-structured interviews were conducted with 38 parents of children with IDD. Regardless of the nature (i.e., positive, or negative) of the advocacy experience, participants reported that advocacy increased their stress. When the advocacy experience was positive, some participants reported improved family quality of life. Also, regardless of the nature of the advocacy experience, some participants reported feeling frustration within their marital relationships. Implications for future research and practice are discussed.

“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 Social-Emotional Aspects of Quality of Life in Multiple Sclerosis

2017 ◽  
Author(s):  
Heidemarie Lex ◽  
Sara Weisenbach ◽  
Jacob Sloane ◽  
Sana Syed ◽  
Eva Rasky ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Statistical Tests ◽  
Family Relations ◽  
Qualitative Interviews ◽  
Personal Characteristics ◽  
The United States ◽  
Structured Interviews ◽  
Social Emotional

Multiple sclerosis (MS) is an inflammatory auto-immune disease of the central nervous system. It leads to many impairments including physical, cognitive, psychological, and social challenges. Our study examined gender and cultural associations with quality of life (QoL), personal characteristics, and benefits from having MS among those with MS.The study was conducted in Austria and the United States. The sample included 128 participants, 64 in each country, of whom 78 were women and 50 were men aged between 20 and 57 years. We used standard statistical tests, including analyses of covariance (ANCOVA) and partial correlations for the analysis of quantitative data. For the qualitative part of the survey we used semi-structured interviews, which we transcribed and coded to identify categories in the answers for qualitative analyses.Austrian participants with MS perceived a higher social-emotional QoL in comparison to American participants. American participants expressed a higher self-esteem in comparison to Austrian participants. Men reported a lower ability to express love than women. Independent of sex/gender and nationality, participants reported benefits through the disease, especially with regard to improved compassion, mindfulness, improved family relations and lifestyle gains. The qualitative interviews revealed additional gender differences for coping with the illness; and in experiences, expectations, and challenges related to MS.These insights can be used to develop targeted psychological and social support interventions aimed toward improving social-emotional QoL for persons with MS.

Sign in / Sign up

Export Citation Format

Share Document