scholarly journals Whose Decision Is It? Perspectives on Agency Involvement in Determining Paid Caregivers' Roles in Dementia Care

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 218-218
Author(s):  
Deborah Watman ◽  
Emma Tsui ◽  
Jennifer Reckrey

Abstract Individuals living at home with dementia often rely on a team of caregivers and health care providers. Yet little is known about how the role of paid caregivers within this team is determined. We identified patients with moderate to severe dementia (n=9) and conducted individual interviews with their care teams (family caregiver, paid caregiver, physician) (n=27) to explore perspectives on paid caregiver roles. Participants disagreed on who determined the paid caregiver’s role. Agencies were perceived to set limitations on the scope of care (particularly by physicians) but agency care plans were often seen as inadequate and failing to capture important nuances of care. Most family caregivers believed they should guide what paid caregivers did in the home, while most paid caregivers reported relying on their own experience and knowledge. Understanding and addressing these differing perceptions is critical to improving the quality of paid care in the home.

Author(s):  
Peggy Z. Shipley

Amyotrophic lateral sclerosis (ALS) impacts greatly not only those who have the disease, but also family caregivers who provide the majority of care for their loved ones throughout the ALS disease trajectory. In the provision of this care, these family caregivers frequently experience significant threats to their own physical and mental health, and thus to their quality of life. The burden of caregiving can be high, distress is not uncommon, and support is needed to best address these issues. Despite the physical and emotional challenges faced by family caregivers, limited research has been directed at this caregiving phenomenon. The more health care providers understand the key elements of the ALS caregiving experience, the better equipped they will be to recognize the caregivers as not only co-providers of care, but as potential recipients of care to meet the unique physical and mental challenges of this caregiving population.


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 535-535
Author(s):  
Julia Burgdorf ◽  
Alicia Arbaje

Abstract During Medicare home health care, providers often rely on family caregivers to help meet patients’ care needs. Beginning in 2018, CMS requires home health agencies to provide training to family caregivers. This qualitative study is the first research to examine current patterns of family caregiver training, and related facilitators and barriers, during Medicare-funded home health care. We conducted semi-structured key informant interviews with home health nurses and physical therapists (n=19) from 4 diverse agencies, then performed thematic analysis of interview transcripts using a hybrid inductive and deductive coding approach. Clinicians described family caregiver education as a dynamic and cyclical process: simultaneously providing patient care, training family caregivers, and gathering additional information about patient needs and caregiver capabilities, then adjusting the care plan accordingly. We present a model of this cyclic process and describe its four major stages: Initial Assessment, Education, Reassessment, and Adjustment. Additionally, clinicians identified a range of structural, individual, and interpersonal factors which impact their ability to successfully train family caregivers. We define each factor and, using illustrative quotes from our interviews, elucidate its role as a facilitator and/or barrier to clinicians’ educational efforts. Findings provide the first model of caregiver training during home health care and highlight policy and practice changes to better support clinicians in these efforts; including greater visit flexibility, access to more experienced clinical mentors, and standardized caregiver assessment tools designed for this unique care setting.


2007 ◽  
Vol 27 (2_suppl) ◽  
pp. 32-34
Author(s):  
Lan Wang ◽  
Jie Dong ◽  
Hong-Bin Gan ◽  
Tao Wang

The management and appropriate treatment of peritoneal dialysis (PD) patients is an ongoing challenge in current health care. We believe that health education—consisting of knowledge, skills, and self-awareness—is a useful mechanism for patient empowerment. Patients should have an awareness of their disease, and as health care providers, PD nurses have the role of focusing their patients on preventive care, rather than of simply training patients. An empowerment program is a valuable intervention for improving the self-management of patients. It can both improve quality of life and assist in rehabilitation.


2012 ◽  
Vol 6 (6) ◽  
pp. 479-488
Author(s):  
Catherine Murphy ◽  
Ronald J DeBellis

Pharmacotherapy can have a significant impact on a patient’s quality of life and health status, potentially affecting multiple lifestyle areas, including weight, smoking status, sleep, and mood. Although pharmacotherapy can have a positive effect on such areas, its effects can also be detrimental. Pharmacists may be the most accessible health care providers to the general public, and their role in advising patients and other health care providers in making appropriate pharmacotherapy choices to positively affect one’s health and lifestyle areas is essential. This review will examine the effects of pharmacotherapy on different areas of lifestyle medicine and the role of the pharmacist as the medication expert in advising and informing patients and providers.


10.2196/16178 ◽  
2019 ◽  
Vol 8 (12) ◽  
pp. e16178 ◽  
Author(s):  
Virginia LeBaron ◽  
James Hayes ◽  
Kate Gordon ◽  
Ridwan Alam ◽  
Nutta Homdee ◽  
...  

Background An estimated 60%-90% of patients with cancer experience moderate to severe pain. Poorly managed cancer pain negatively affects the quality of life for both patients and their family caregivers and can be a particularly challenging symptom to manage at home. Mobile and wireless technology (“Smart Health”) has significant potential to support patients with cancer and their family caregivers and empower them to safely and effectively manage cancer pain. Objective This study will deploy a package of sensing technologies, known as Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C), and evaluate its feasibility and acceptability among patients with cancer-family caregiver dyads. Our primary aims are to explore the ability of BESI-C to reliably measure and describe variables relevant to cancer pain in the home setting and to better understand the dyadic effect of pain between patients and family caregivers. A secondary objective is to explore how to best share collected data among key stakeholders (patients, caregivers, and health care providers). Methods This descriptive two-year pilot study will include dyads of patients with advanced cancer and their primary family caregivers recruited from an academic medical center outpatient palliative care clinic. Physiological (eg, heart rate, activity) and room-level environmental variables (ambient temperature, humidity, barometric pressure, light, and noise) will be continuously monitored and collected. Behavioral and experiential variables will be actively collected when the caregiver or patient interacts with the custom BESI-C app on their respective smart watch to mark and describe pain events and answer brief, daily ecological momentary assessment surveys. Preliminary analysis will explore the ability of the sensing modalities to infer and detect pain events. Feasibility will be assessed by logistic barriers related to in-home deployment, technical failures related to data capture and fidelity, smart watch wearability issues, and patient recruitment and attrition rates. Acceptability will be measured by dyad perceptions and receptivity to BESI-C through a brief, structured interview and surveys conducted at deployment completion. We will also review summaries of dyad data with participants and health care providers to seek their input regarding data display and content. Results Recruitment began in July 2019 and is in progress. We anticipate the preliminary results to be available by summer 2021. Conclusions BESI-C has significant potential to monitor and predict pain while concurrently enhancing communication, self-efficacy, safety, and quality of life for patients and family caregivers coping with serious illness such as cancer. This exploratory research offers a novel approach to deliver personalized symptom management strategies, improve patient and caregiver outcomes, and reduce disparities in access to pain management and palliative care services. International Registered Report Identifier (IRRID) DERR1-10.2196/16178


2016 ◽  
Vol 2 (1) ◽  
pp. 10-18 ◽  
Author(s):  
Faida Annisa

Shifting from hospital-based care to community-based care involves the family as advanced caregivers to the patients with Schizophrenia at their home. Yet, they have need of knowledge and skill in caring the patients as well as support from health care providers and society. Family caregivers should be well-prepared to take care the patients with Schizophrenia at home since it gets some negative consequences on their physical, psychological, social, and financial. Nurse need to assess the factors that might influence the family caregivers to felling burden, and include the family caregivers into nursing care in which would not only to improve the patients’ mental health but the family caregivers as well.


2019 ◽  
Vol 5 ◽  
pp. 237796081988976
Author(s):  
Nada Alsuhebany ◽  
Lama Alfehaid ◽  
Hind Almodaimegh ◽  
Abdulkareem Albekairy ◽  
Shmeylan Alharbi

Clinical pharmacists are responsible for guiding pharmacotherapy and ensuring medication safety along with other health-care providers. This study highlighted barriers that physicians and nurses encounter when interacting with clinical pharmacists. Twenty-seven physicians and nurses were randomly invited to participate in focus-group discussions. Five focus-group discussions were recorded and then transcribed, and the transcripts were reviewed and coded. Three major themes were identified, which were the role of clinical pharmacists, interprofessional communication, and competency. The greatest challenge reported in this study was lack of consistent understanding of the role of clinical pharmacists which to some extent caused communication deficiencies and affected the level of involvement with multidisciplinary teams. Despite that, majority of the participants perceived pharmacists as beneficial in optimizing pharmacotherapy and improving quality of care. Clinical pharmacy services are perceived positively in impacting quality of care as expressed by majority of the study participants. However, there is a lack of common understanding of the role of clinical pharmacists by other health-care providers.


2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 50-50
Author(s):  
Tara Carpenter-Kellett ◽  
Jeffrey James Sisler

50 Background: Patient experience and local and international clinical research have focused attention on transitions in cancer care from treatment to follow-up. Deficiencies in the quality of survivorship care, including necessary testing, have been demonstrated. The Canadian Partnership Against Cancer has funded projects designed to enhance the implementation of survivorship care plans (SCPs) and to improve cancer system-primary care coordination. CancerCare Manitoba, a provincial agency, is a leader in this work. Methods: The Moving Forward After Cancer initiative combines the generation of standardized written SCPs from the EMR with enhanced patient assessment at the end of curative systemic / radiation therapy. A transition appointment (TA) is provided by the patient’s usual oncology providers and includes screening for distress, appropriate referrals, and provision of a personalized treatment summary and SCP to the patient, with copies to the primary care physician and surgeon. The TA often marks the transfer of medical responsibility to the primary care provider (PCP). Results: Transition appointments have been implemented for colorectal (2012), breast (2014), and lymphoma and gynecologic cancer patients (2015). A total of 364 TAs were done in Manitoba in 2014, of which 140 were with colorectal (stage II and III) and 224 with breast (stage I – III) patients, about 59% and 35% respectively of eligible patients. This is an increase of 385% from the 75 TAs done in 2013. Other patient outcomes being collected include perceptions of continuity of care, confidence in survivorship information, evaluation of the care plan documents and also PCP and oncology team perceptions. In order to support practice change, a workflow solution led by a designated team that is adaptable by all sites across the province has been developed. Conclusions: The provision of TAs and SCPs is being well adopted in Manitoba. We expect that this intervention willimprove the experience of both patients and health care providers and the quality of care at the time of transition to survivorship. Implementation is underway with other disease site groups with the goal of all patients receiving a TA as they transition into survivorship.


2015 ◽  
pp. 16-21

Introduction. The patient’s spiritual needs are an important part of providing hospital care. Health care providers often fail to take the patient’s spirituality into consideration. The patients’ religious needs are often ignored and omitted while preparing care plans. These issues should be looked at by both the members of therapeutic teams and religious ministers. The Polish law regulates allows patients to have access to religious care. Preparing nurses to assist in realizing is an important part of education preparing to care. Aim. The aim of the study was to elicit nurses’ opinions about the patients’ spiritual needs and the role of nurses in the implementation of spiritual care. Material and method. The study included 88 nurses working in health care sector in the province of Malopolska, currently studying at Higher Vocational School in Tarnow majoring in nursing through part-time first-cycle studies (bridging) and the second-cycle studies. The study was conducted in November 2013. Due to its specificity, it has not required obtaining any approval papers from the Bioethical Committee. The authors conducted the study using a diagnostic survey with a questionnaire of their own making. Results. A vast majority of the respondents (76.1%) believe that the spiritual needs of patients are often ignored by health care providers. Some 98.9% of students (participants in the study) stated that nurse should actively participate in identifying and meeting spiritual needs of patients. According some 80.7% of the participants, most employers do not gather any information regarding the patients’ worldview or religious needs. Conclusions. Studies have shown that: 1. Spiritual needs of patients are rarely included in care plans. 2. Nurses should participate in identifying and meeting spiritual needs of patients. 3. Health care institutions rarely collect any information about the worldview and spiritual needs of their patients.


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