scholarly journals The Experience of Care Partners of Patients with Parkinsonism and Psychosis

2021 ◽  
Author(s):  
Sneha Mantri ◽  
Emily Klawson ◽  
Steven Albert ◽  
Robyn Rapoport ◽  
Chelle Precht ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lived Experiences ◽  
Emotional Reactions ◽  
Medical System ◽  
Medical Professionals ◽  
Telephone Interviews ◽  
Experience Of Care ◽  
Sources Of Knowledge ◽  
Care Partners

ABSTRACTBackgroundParkinson’s disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP.ObjectiveTo understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis.MethodsThis was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed.ResultsNine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers.ConclusionsThis qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners.

scholarly journals The experience of care partners of patients with Parkinson’s disease psychosis

PLoS ONE ◽  
2021 ◽  
Vol 16 (3) ◽  
pp. e0248968
Author(s):  
Sneha Mantri ◽  
Emily Klawson ◽  
Steven Albert ◽  
Robyn Rapoport ◽  
Chelle Precht ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Lived Experiences ◽  
Emotional Reactions ◽  
Medical System ◽  
Telephone Interviews ◽  
Experience Of Care ◽  
Sources Of Knowledge ◽  
Care Partners

Background Parkinson’s disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP. Objective To understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis. Methods This was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed. Results Nine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers. Conclusions This qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners.

scholarly journals The Lived Experiences of Retired Collegiate Athletes With a History of 1 or More Concussions

2018 ◽  
Vol 53 (7) ◽  
pp. 646-656 ◽  
Author(s):  
Rebecca Cover ◽  
Trevor Roiger ◽  
Mary Beth Zwart
Keyword(s):  
Quality Of Life ◽  
Lived Experiences ◽  
Injury Severity ◽  
Collegiate Athletes ◽  
Adverse Outcomes ◽  
Return To Play ◽  
Telephone Interviews ◽  
Persistent Symptoms ◽  
History Of

Context: Concussions remain misunderstood, underreported, and undiagnosed. Although most concussion symptoms resolve within 2 weeks, some patients experience persistent symptoms that adversely affect physical, emotional, social, or cognitive functioning or a combination of these. Minimal evidence delineating the effect of concussions on recently retired collegiate athletes currently exists.Objective: To examine the lived experiences of retired collegiate athletes with a history of 1 or more concussions to discern individual concussion histories, knowledge and perceptions of concussions, and postconcussion quality of life.Design: Qualitative study.Setting: Telephone interviews.Patients or Other Participants: Former National Collegiate Athletic Association Division I athletes (n = 14) with a history of 1 or more concussions and retired from 1 to 5 years.Data Collection and Analysis: Fourteen semistructured telephone interviews (8 men and 6 women) were audiotaped. Interviews were transcribed and inductively analyzed by 3 athletic trainers with 34 combined years of professional experience. Themes were negotiated through consensual review. Participant checks were completed to ensure trustworthiness of the findings.Results: Participants sustained their first concussion during adolescence and often experienced difficulties transitioning back into the postconcussion academic environment. Judgments of injury severity were clearly evident in participants' knowledge and perceptions of concussions. Participants experienced an array of emotional, physical, cognitive, and social challenges during the immediate postconcussion period but did not feel their concussion history decreased their current quality of life.Conclusions: Adolescent exposure to concussions is of concern due to the risk imposed on the developing brain and the potential for adverse outcomes later in life. Although a graduated return to play is heavily emphasized in concussion management, researchers need to investigate barriers inhibiting the implementation of return-to-learn protocols. Concussion education should aim to modify indifferent attitudes toward concussive injuries. Additionally, investigators should continue to assess how a history of concussion affects quality of life in recently retired collegiate athletes.

scholarly journals LGBTQ+ Aging Research in Canada: A 30-Year Scoping Review of the Literature

Geriatrics ◽  
2021 ◽  
Vol 6 (2) ◽  
pp. 60
Author(s):  
Kimberley Wilson ◽  
Arne Stinchcombe ◽  
Sophie M. Regalado
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Scoping Review ◽  
Lived Experiences ◽  
Systematic Search ◽  
Review Of The Literature ◽  
Aging Research ◽  
Aging Populations ◽  
Diverse Groups

Canada has a unique socio-political history concerning the inclusion of lesbian, gay, bisexual, transgender, and queer (LGBTQ+) people. With aging populations, understanding diverse groups of older adults is paramount. We completed a systematic search and scoping review of research in Canada to quantify and articulate the scale and scope of research on LGBTQ+ aging. Our search identified over 4000 results and, after screening for relevance, our review focused on 70 articles. Five major themes in the literature on LGBTQ+ aging in Canada were identified: (1) risk, (2) HIV, (3) stigma, and discrimination as barriers to care, (4) navigating care and identity, (5) documenting the history and changing policy landscapes. Most of the articles were not focused on the aging, yet the findings are relevant when considering the lived experiences of current older adults within LGBTQ+ communities. Advancing the evidence on LGBTQ+ aging involves improving the quality of life and aging experiences for LGBTQ+ older adults through 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.

Commentary on “The experiences of older carers of people with learning disabilities: ‘I just carry on with it’”

2021 ◽  
Vol 26 (1) ◽  
pp. 58-62
Author(s):  
Jan Sunman
Keyword(s):  
Quality Of Life ◽  
Learning Disabilities ◽  
Lived Experiences ◽  
Design Methodology ◽  
Policy And Practice ◽  
Content Type ◽  
The Voice

Purpose The purpose of this paper is to provide a commentary on the article by Rachel Forrester-Jones on the experiences of older carers of people with learning disabilities. Design/methodology/approach The commentary reflects on the themes identified in the original article, comparing its findings to the lived experiences of those taking part in older carers’ projects in Oxfordshire, England. Findings Similar broad themes were identified in both samples. Given these findings, the extent to which matters have changed, since the Valuing People work on older carers is considered. Originality/value The paper discusses policy and practice implications to improve the quality of life of older carers and their families and explores how the voice of older carers can be strengthened to enable them to shape practice and policy.

scholarly journals Lived experiences and quality of life after gynaecological cancer—An integrative review

2019 ◽  
Vol 28 (9-10) ◽  
pp. 1393-1421 ◽  
Author(s):  
Ragnhild Johanne Tveit Sekse ◽  
Gail Dunberger ◽  
Mette Linnet Olesen ◽  
Maria Østerbye ◽  
Lene Seibæk
Keyword(s):  
Quality Of Life ◽  
Lived Experiences ◽  
Gynaecological Cancer ◽  
Integrative Review

scholarly journals An Exploratory Study of Quality of Life and Its Relationship with Academic Performance among Students in Medical and other Health Professions

2020 ◽  
Vol 8 (2) ◽  
pp. 23 ◽  
Author(s):  
Vijay Kumar Chattu ◽  
Pradeep Kumar Sahu ◽  
Neela Seedial ◽  
Gerlisa Seecharan ◽  
Amanda Seepersad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Academic Performance ◽  
Psychological Health ◽  
Critical Role ◽  
Health Professions ◽  
Emotional Reactions ◽  
Grade Point ◽  
Cumulative Grade Point Average ◽  
Validated Questionnaire

Quality of life (QOL) is a broader concept which represents experiences, states, appraisals, behaviors, capacities and emotional reactions to circumstances. The study aimed to evaluate the differences in various domains of QOL among the students of five schools (medicine, dentistry, veterinary medicine, pharmacy and nursing) and an optometry unit in the Faculty of Medical Sciences, Trinidad and Tobago. Further, the study evaluated the factors (sociodemographic variables and academic performance) predictive of physical, psychological, social and environment domains of quality of life. The research tool consisted of a validated questionnaire which had two sections; (1) sociodemographics inclusive of students’ cumulative grade point average and (2) the shorter version of WHO quality of life (WHOQOL-BREF). The data were transformed into a linear scale and exported into the IBM SPSS version 24 where t-tests, one-way ANOVA and stepwise regression were performed. Of the total 535 participants, most 383 (71.6%) were females. While comparing the differences in the domains of QOL that existed based on the schools (professions) they were enrolled, significant differences were recorded for physical (p < 0.05), psychological (p < 0.05) social (p < 0.05) and environmental domains (p < 0.05). Though the domains of physical health, psychological health and environment showed a significant association with the academic performance of students, the social domain had no such relationship. The overall quality of life has a positive connection with the academic performance of students in medical and health professions. Therefore, universities and all stakeholders involved in health professions need to play a critical role to ensure the students in health professions maintain a high QOL. At the same time, there is a great need for extra attention for students who showed poor academic performance in the previous semester to bring them on track.

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.

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