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  1. Article ; Online: Love in the Time of Caregiving.

    Seshadri, Sandhya

    Journal of palliative medicine

    2023  Volume 26, Issue 12, Page(s) 1750–1751

    MeSH term(s) Humans ; Love ; Caregivers ; Spouses
    Language English
    Publishing date 2023-10-10
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1427361-5
    ISSN 1557-7740 ; 1096-6218
    ISSN (online) 1557-7740
    ISSN 1096-6218
    DOI 10.1089/jpm.2023.0368
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  2. Article ; Online: Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.

    Seshadri, Sandhya / Contento, Angela / Sugiura, Kei / Abendroth, Maryann / Macchi, Zachary / Kluger, Benzi M

    The American journal of hospice & palliative care

    2024  , Page(s) 10499091231223739

    Abstract: Background: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions ... ...

    Abstract Background: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving.
    Aim: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving.
    Method: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners
    Results: We identified 5 themes:
    Conclusions: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support.
    Language English
    Publishing date 2024-01-24
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1074344-3
    ISSN 1938-2715 ; 1049-9091
    ISSN (online) 1938-2715
    ISSN 1049-9091
    DOI 10.1177/10499091231223739
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  3. Article ; Online: Uncovering Patient and Caregiver Goals for Goal-Concordant Care in Kidney Therapy Decisions.

    Sampath, Ramya / Seshadri, Sandhya / Phan, Tramanh / Allen, Rebecca / Duberstein, Paul R / Saeed, Fahad

    The American journal of hospice & palliative care

    2024  , Page(s) 10499091241227242

    Abstract: Context: In kidney therapy (KT) decisions, goal-concordant decision-making is recognized to be important, yet alignment with patients' goals during dialysis initiation is not always achieved.: Objectives: To explore older patients' and caregivers' ... ...

    Abstract Context: In kidney therapy (KT) decisions, goal-concordant decision-making is recognized to be important, yet alignment with patients' goals during dialysis initiation is not always achieved.
    Objectives: To explore older patients' and caregivers' hopes, goals, and fears related to KT and communication of these elements with members of their health care team.
    Methods: The study included patients aged ≥75 years with an estimated glomerular filtration rate ≤25 mL/min/1.73 m2 and their caregivers enrolled in a palliative care intervention for KT decision-making. Patients and caregivers were asked open-ended questions about their hopes, goals, and fears related to KT decisions. A survey assessed if patients shared their goals with members of their health care team. Qualitative data underwent content analysis, supplemented by demographic descriptive statistics.
    Results: The mean age of patients (n = 26) was 82.7 (±5.7) years, and caregivers (n = 15) had a mean age of 66.4 (±13.7) years. Among the participants, 13 patients and 11 caregivers were women, and 20 patients and 12 caregivers were White. Four themes emerged: (1) Maintaining things as good as they are by avoiding dialysis-related burdens; (2) seeking longevity while avoiding dialysis; (3) avoiding pain, symptoms, and body disfigurement; and (4) deferring decision-making. Patients rarely had shared their goals with the key members of their health care team.
    Conclusion: Patients and caregivers prioritize maintaining quality of life, deferring decision-making regarding dialysis, and avoiding dialysis-related burdens. These goals are often unshared with their family and health care teams. Given our aging population, urgent action is needed to educate clinicians to actively explore and engage with patient goals in KT decision-making.
    Language English
    Publishing date 2024-01-09
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1074344-3
    ISSN 1938-2715 ; 1049-9091
    ISSN (online) 1938-2715
    ISSN 1049-9091
    DOI 10.1177/10499091241227242
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  4. Article ; Online: Spirituality and Spiritual Distress in Parkinson's Disease Caregivers: A Scoping Review.

    Seshadri, Sandhya / Sugiura, Kei / Mirham, Miray / Aamodt, Whitley W / Kluger, Benzi M

    Journal of religion and health

    2023  Volume 62, Issue 6, Page(s) 4222–4243

    Abstract: Despite recognition that spiritual concerns contribute to caregiver burden, little is known about spirituality, spiritual well-being, and spiritual distress in Parkinson's disease caregivers. In this scoping review of the literature through October 2022, ...

    Abstract Despite recognition that spiritual concerns contribute to caregiver burden, little is known about spirituality, spiritual well-being, and spiritual distress in Parkinson's disease caregivers. In this scoping review of the literature through October 2022, we searched PubMed, PsychINFO, Embase, and CINAHL. From an initial pool of 328 studies, 14 were included. Caregiver factors (e.g., depression, age) and patient factors (e.g., faith, motor function) affected caregiver spirituality and spiritual well-being. Caregivers experienced loss of meaning, existential guilt, and loneliness, and coped through acquiescence, cultural beliefs, prayer, and gratitude. Future research should focus on the specific spiritual needs of Parkinson's disease caregivers and interventions to address them.
    MeSH term(s) Humans ; Spirituality ; Caregivers ; Parkinson Disease ; Quality of Life ; Spiritual Therapies
    Language English
    Publishing date 2023-09-13
    Publishing country United States
    Document type Review ; Journal Article
    ZDB-ID 2017250-3
    ISSN 1573-6571 ; 0022-4197
    ISSN (online) 1573-6571
    ISSN 0022-4197
    DOI 10.1007/s10943-023-01913-5
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  5. Article: Current Status of Integrated Palliative Care Among Parkinson Foundation Centers of Excellence in the United States.

    Akbar, Umer / Seshadri, Sandhya / Dini, Megan / Auinger, Peggy / Norton, Sally A / Holtrop, Jodi S / Kluger, Benzi M

    Neurology. Clinical practice

    2024  Volume 14, Issue 2, Page(s) e200278

    Abstract: Background and objectives: To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States.: Methods: Three ... ...

    Abstract Background and objectives: To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States.
    Methods: Three unique surveys were administered to health care professionals/staff at COEs to assess PC (1) resources, (2) knowledge and comfort, (3) clinical experience and processes, (4) barriers, and (5) readiness for implementation.
    Results: Response rates for the 3 surveys were 97%, 98%, and 56%. In total, 41% of COEs have access to outpatient PC specialists, 71% have mental health counseling, 82% have support groups, and 9% had very limited PC resources. Overall, 74% of providers believed persons with advanced PD should receive PC, and knowledge of PC fundamentals was good across providers. For high-needs persons with PD (PWP), only 16% of physicians and 24% of advanced practice providers made referrals to PC specialists ≥75% of the time, while 9% and 16% never made such referrals. Limited time, space, financing, and staffing were seen as major barriers to PC implementation. In total, 37% of providers were satisfied with their COE's ability to provide PC services. Most COEs report a culture open to change and appear well-positioned to implement PC in a more comprehensive fashion.
    Discussion: These results demonstrate the emergence of structures and processes to provide PC to persons with PD at COEs. They also identify concrete opportunities to strengthen integration of PC through educational, quality improvement, and advocacy efforts.
    Language English
    Publishing date 2024-03-01
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2645818-4
    ISSN 2163-0933 ; 2163-0402
    ISSN (online) 2163-0933
    ISSN 2163-0402
    DOI 10.1212/CPJ.0000000000200278
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  6. Article: Caregiver Burden in Parkinson Disease: A Scoping Review of the Literature from 2017-2022.

    Aamodt, Whitley W / Kluger, Benzi M / Mirham, Miray / Job, Anna / Lettenberger, Samantha E / Mosley, Philip E / Seshadri, Sandhya

    Journal of geriatric psychiatry and neurology

    2023  Volume 37, Issue 2, Page(s) 96–113

    Abstract: Caregiver burden is a term that refers to the adverse effect of caregiving on the physical, emotional, social, spiritual, and financial well-being of the caregiver. Caregiver burden is associated with providing care to an individual with a chronic ... ...

    Abstract Caregiver burden is a term that refers to the adverse effect of caregiving on the physical, emotional, social, spiritual, and financial well-being of the caregiver. Caregiver burden is associated with providing care to an individual with a chronic illness or disability, and the unique symptoms of Parkinson disease (PD) can amplify a patient's needs and reliance on others, leading to adverse outcomes for patients and their caregivers. In this scoping review of the literature from January 2017 through April 2022 that included 114 studies, we provide an updated, evidence-based summary of patient and caregiver-related factors that contribute to caregiver burden in PD. We also describe the impact of caregiver stress and burden on caregivers based on qualitative research studies and review recent interventions to mitigate burden. By providing clinical updates for practitioners, this review is designed to improve recognition of caregiver burden in the post-pandemic era and foster the development of targeted interventions to reduce caregiver burden in PD.
    MeSH term(s) Humans ; Caregiver Burden ; Cost of Illness ; Parkinson Disease/psychology ; Caregivers/psychology ; Emotions ; Quality of Life
    Language English
    Publishing date 2023-08-08
    Publishing country United States
    Document type Review ; Journal Article
    ZDB-ID 1035760-9
    ISSN 0891-9887
    ISSN 0891-9887
    DOI 10.1177/08919887231195219
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    Zs.A 2631: Show issues Location:
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  7. Article ; Online: Training Researchers in the Field of Religion, Spirituality, and Health: Experiences from a Workshop in the United States and Recommendations for Future Workshop Curricula.

    Stripp, Tobias Anker / Long, Elaine C / Mosashvili, Ketevan / Cipta, Andre M / LaBat, Sean J / Seshadri, Sandhya

    Journal of religion and health

    2023  Volume 62, Issue 5, Page(s) 3520–3528

    Abstract: Although a substantial amount of research has been conducted in the field of religion, spirituality, and health, much still needs to be done. Training of researchers to conduct studies in the field of religion, spirituality, and health is essential for ... ...

    Abstract Although a substantial amount of research has been conducted in the field of religion, spirituality, and health, much still needs to be done. Training of researchers to conduct studies in the field of religion, spirituality, and health is essential for continued academic and methodological rigor. Such training should be globally oriented to ensure both representation and evidence from non-western cultures which is currently lacking. While little attention is given to this area in mainstream contemporary academic curricula, some researchers in the field have provided exceptional leadership in designing programs to train future researchers. In this commentary, the authors who participated in one such training program at Duke University, offer their insights based on a qualitative descriptive analysis of survey responses from a sample of participants. These insights relate to participants' perceptions of the most valuable experiences from a workshop on religion, spirituality, and health, and include recommendations for future content in training programs in this field. The multicultural aspect of the program with researchers, clinicians, and other professionals from 17 different countries was the most enriching aspect of the workshop. One of the key recommendations for future training efforts is to dedicate workshop time for participants to work collaboratively in the design and plan for international and interdisciplinary research projects with guidance from faculty.Please confirm if the author names are presented accurately and in the correct sequence (given name, middle name/initial, family name). Author 1 Given name: [Tobias Anker] Last name [Stripp]. Also, kindly confirm the details in the metadata are correct.They are correct.
    MeSH term(s) Humans ; United States ; Spirituality ; Religion ; Curriculum ; Spiritual Therapies ; Internship and Residency
    Language English
    Publishing date 2023-04-12
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2017250-3
    ISSN 1573-6571 ; 0022-4197
    ISSN (online) 1573-6571
    ISSN 0022-4197
    DOI 10.1007/s10943-023-01812-9
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  8. Article ; Online: Parkinson disease patients' and carepartners' perceptions of palliative care.

    Seshadri, Sandhya / Dini, Megan / Corcoran, Jennifer / Job, Anna / Contento, Angela / Norton, Sally A / Holtrop, Jodi Summers / Kluger, Benzi M

    Parkinsonism & related disorders

    2023  Volume 119, Page(s) 105982

    Abstract: Introduction: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited ... ...

    Abstract Introduction: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation.
    Methods: Using qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed.
    Results: Five themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients' emotional needs and for carepartners, and for anticipatory guidance to guide future planning.
    Conclusions: Despite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.
    MeSH term(s) Humans ; Palliative Care ; Parkinson Disease/therapy ; Parkinson Disease/psychology ; Quality of Life ; Qualitative Research ; Patients
    Language English
    Publishing date 2023-12-28
    Publishing country England
    Document type Journal Article
    ZDB-ID 1311489-x
    ISSN 1873-5126 ; 1353-8020
    ISSN (online) 1873-5126
    ISSN 1353-8020
    DOI 10.1016/j.parkreldis.2023.105982
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    Zs.A 4553: Show issues Location:
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  9. Article ; Online: Between a Rock and a Hard Place: The Challenges of Caregiving During a Pandemic for Parkinson's Family Care Partners.

    Seshadri, Sandhya / Norton, Sally A / Stahl, Tyler / Shah, Mina / Dini, Megan / Yarab, Nicole / Holtrop, Jodi Summers / Kluger, Benzi M

    The American journal of hospice & palliative care

    2022  Volume 40, Issue 7, Page(s) 784–792

    Abstract: ... ...

    Abstract Aim
    MeSH term(s) Humans ; Caregivers ; Parkinson Disease/therapy ; Pandemics ; Palliative Care ; Self Care ; Qualitative Research
    Language English
    Publishing date 2022-08-09
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1074344-3
    ISSN 1938-2715 ; 1049-9091
    ISSN (online) 1938-2715
    ISSN 1049-9091
    DOI 10.1177/10499091221119462
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  10. Article: Reach of Palliative Care for Parkinson Disease: Results From a Large National Survey of Patients and Care Partners.

    Seshadri, Sandhya / Dini, Megan / Macchi, Zachary / Auinger, Peggy / Norton, Sally A / Holtrop, Jodi S / Kluger, Benzi M

    Neurology. Clinical practice

    2023  Volume 13, Issue 6, Page(s) e200214

    Abstract: Background and objectives: People with Parkinson disease (PWP) and their care partners have high palliative care needs resulting from disabling motor and nonmotor symptoms. There is growing support for palliative care (PC) approaches to Parkinson ... ...

    Abstract Background and objectives: People with Parkinson disease (PWP) and their care partners have high palliative care needs resulting from disabling motor and nonmotor symptoms. There is growing support for palliative care (PC) approaches to Parkinson disease. However, little is known regarding the extent to which the palliative needs of PWP and care partners are currently being met. This study's primary objective is to describe PWP's and care partners' perceptions of the extent to which their PC needs are being met. Secondary objectives are to describe their perceptions of the quality of clinical communication and their knowledge of PC.
    Methods: PWPs and care partners (n = 12,995) who had consented to receiving surveys from the Parkinson's Foundation were emailed an electronic survey. PC was operationalized as comprising 5 key components: systematic assessment and management of (1) nonmotor symptoms, (2) PWPs' emotional and spiritual needs, (3) care partners' needs, (4) the completion of annual advance care planning, and (5) timely referrals to specialist palliative care and hospice when appropriate.
    Results: A total 1,882 individuals (1,266 PWP and 616 care partners) responded to the survey (response rate 14.5%). Few PWP (22%) reported that their neurologists never asked regarding bothersome nonmotor symptoms or did so or only if they brought it up. Fifty percent of PWP reported that pain as a specific nonmotor symptom was never managed or managed only if they brought it up. Similarly, PWPs' emotional and spiritual needs (55%), care partners' well-being (57%), and completion of advance care planning documentation (79%) were never addressed or only addressed if PWP brought it up. The quality of clinical communication was generally rated as open and honest (64% PWP). Fewer PWP (30%) reported that doctors helped them deal with the uncertainties of Parkinson disease. Most PWP (85%) reported being knowledgeable regarding PC, and 68% reported that the goal of PC was to help friends and family cope with the illness.
    Discussion: Although some elements of PC are currently being addressed in routine care for PWP, there are many gaps and opportunities for improvement. These data may facilitate focused attention and development of resources to improve the quality and availability of PC for Parkinson disease.
    Language English
    Publishing date 2023-10-16
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2645818-4
    ISSN 2163-0933 ; 2163-0402
    ISSN (online) 2163-0933
    ISSN 2163-0402
    DOI 10.1212/CPJ.0000000000200214
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