scholarly journals Stakeholder Perspectives on the Biopsychosocial and Spiritual Realities of Living With ALS: Implications for Palliative Care Teams

2019 ◽  
Vol 36 (10) ◽  
pp. 851-857 ◽  
Author(s):  
Klaudia Kukulka ◽  
Karla T. Washington ◽  
Raghav Govindarajan ◽  
David R. Mehr
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Quantitative Data ◽  
Well Being ◽  
Social Needs ◽  
Care Providers ◽  
Structured Interviews ◽  
Palliative Care Teams ◽  
The Impact

Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS. Objective: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Methods: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS. Results: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease. Conclusion: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.

scholarly journals 407 - The Baycrest Quick-Response Caregiver Tool: The Role for a New Tool for Caregivers of Persons with Dementia

2020 ◽  
Vol 32 (S1) ◽  
pp. 123-123
Author(s):  
Ken Schwartz ◽  
Robert Madan ◽  
Anna Berall ◽  
Marsha Natadira ◽  
Anna Santiago
Keyword(s):  
Family Caregivers ◽  
Health Care Providers ◽  
Healthcare Providers ◽  
Well Being ◽  
Moderate Degree ◽  
Quick Response ◽  
Care Providers ◽  
High Level ◽  
Person With Dementia ◽  
The Impact

Background:Responsive behaviours in dementia are associated with poor outcomes for the person with dementia (PWD) and caregiver burnout. Family caregivers need a variety of tools to manage responsive behaviours. The Baycrest Quick-Response Caregiver Tool was developed to provide caregivers with a tool that can be used in real time. In this study, the feasibility, impact, and effectiveness of this new tool were studied in family caregivers and health care providers (HCP) using quantitative and qualitative measures.Methods:Family caregivers were recruited and were asked to complete a pre-survey before being sent the link to the educational tool. One month after the telephone survey, caregivers were sent an online post-survey to gather their feedback on the tool and the impact of the tool on caregiver well -being. Healthcare providers were also recruited and reviewed the tool through an online feedback survey. The feasibility, impact, and effectiveness of the tool were assessed using quantitative and qualitative measures.Results:Caregivers had a moderate degree of and reported a high level of competence - these scores were maintained throughout the study. Caregivers reported that tool positively impacted their compassion towards the person with dementia (PWD), and that their interactions with improved. 100% of HCP who completed the feedback survey would recommend the tool to other HCP and to caregivers of PWD. The caregivers and HCP provided specific suggestions for improvement.Conclusions:The Baycrest Quick-Response Caregiver Tool was found to be feasible and helpful. It provides caregivers and HCP with an additional approach for responsive behaviours.

The Importance of Religiosity to the Well-Being of African American Older Adults Living With Dementia

2018 ◽  
Vol 39 (5) ◽  
pp. 509-518 ◽  
Author(s):  
Fayron Epps ◽  
Ishan C. Williams
Keyword(s):  
Older Adults ◽  
Health Promotion ◽  
Family Caregivers ◽  
Family Involvement ◽  
Health Care Providers ◽  
Well Being ◽  
Religious Practices ◽  
Care Providers ◽  
Religious Activities ◽  
Structured Interviews

This study was a post hoc analysis of a larger qualitative descriptive study exploring family involvement in health promotion activities for African Americans living with dementia where participants identified religious practices as meaningful health promotion activities. The purpose of this study was to explore ways in which religiosity may influence the well-being of older adults living with dementia. Semi-structured interviews were conducted among a sample of 22 family caregivers and 15 older adults living with dementia ( N = 37). Three themes emerged: Engagement, Promotion of Faith and Spiritual Connectedness, and Maintenance of Religious Practices. It is imperative for family caregivers to understand the important contributions of religious activities and beliefs to the well-being of their family member. This information might be of use for faith communities, policy makers, and health care providers in the provision of optimal person-centered care and the promotion of quality of life for persons living with dementia.

On the road again: Patient perspectives on commuting for palliative care

2010 ◽  
Vol 8 (2) ◽  
pp. 187-195 ◽  
Author(s):  
Barbara Pesut ◽  
Carole A. Robinson ◽  
Joan L. Bottorff ◽  
Gillian Fyles ◽  
Sandra Broughton
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Well Being ◽  
Cancer Center ◽  
Care Providers ◽  
Structured Interviews ◽  
On The Road

AbstractObjective:The aim of this research project was to gain an understanding of the experiences of rural cancer patients who commute to an urban cancer center for palliative care.Method:The study utilized a mixed method design. Fifteen individuals with a palliative designation participated in semi-structured interviews and filled out the Problems and Needs in Palliative Care Questionnaire.Results:Qualitative findings included three major themes: cultures of rural life and care, strategies for commuting, and the effects of commuting. Participants valued their rural lifestyles and gained significant support from their communities. Strategies included preparing for the trip with particular attention to pain management, making the most of time, and maintaining significant relationships. Establishing a routine helped to offset the anxiety of commuting. Commuting was costly but the quality of life and supportive relationships obtained through treatment were significant benefits. Questionnaire data suggested that participants were experiencing a number of problems but few indicated they desired more professional attention to those problems.Significance of Results:Rural lifestyles are often an important part of overall well-being and commuting for care is both costly and complex. Health care providers should assist individuals to weigh the relative contributions of staying in their rural locale versus commuting for care to their overall quality of life. Palliative-care individuals in this study indicated a number of ongoing problems but were not inclined to seek further assistance from health care providers in addressing those problems. Clinicians should actively inquire about problems and further research is needed to understand why patients are reluctant to seek help.

Interprofessional Intervention to Support Mature Women: A Case Study

2015 ◽  
Vol 21 (3) ◽  
pp. 134-143 ◽  
Author(s):  
Judith M. Pechacek ◽  
Diana Drake ◽  
Carrie Ann Terrell ◽  
Carolyn Torkelson
Keyword(s):  
Women’S Health ◽  
Women's Health ◽  
Health Care Providers ◽  
Interprofessional Education ◽  
Well Being ◽  
Collaborative Practice ◽  
Health Needs ◽  
Care Providers ◽  
The Impact

Understanding the impact interprofessional teamwork has on patient outcomes is of great interest to health care providers, educators, and administrators. This article describes one clinical team, Women’s Health Specialists, and their implementation of an interprofessional health intervention course: “Mindfulness and Well-being: The Mature Woman” (MW: MW) to support mature women’s health needs in midlife (age 40–70 years) and empower patient involvement in self-care. The provider team works to understand how their interprofessional education and collaborative practice (IPECP) interventions focused on supporting midlife women are associated with improved quality and clinical outcomes. This case study describes the work of the Women’s Health Specialists clinic in partnership with the National Center for Interprofessional Education and Collaborative Practice to study the impact an interprofessional team has on the health needs of women in midlife. This article summarizes the project structure, processes, outputs, and outcomes. Data collection, analysis, strategy, and next steps for future midlife women’s projects are also discussed.

Patient Presentation Trends at 15 Mass-Gathering Events in South Australia

2018 ◽  
Vol 33 (4) ◽  
pp. 368-374 ◽  
Author(s):  
Olga Anikeeva ◽  
Paul Arbon ◽  
Kathryn Zeitz ◽  
Murk Bottema ◽  
Adam Lund ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
South Australia ◽  
Well Being ◽  
Mass Gathering ◽  
Care Providers ◽  
Mass Gatherings ◽  
Being There ◽  
The Impact ◽  
Patient Presentation

AbstractIntroductionMass gatherings are complex events that present a unique set of challenges to attendees’ health and well-being. There are numerous factors that influence the number and type of injuries and illnesses that occur at these events, including weather, event and venue type, and crowd demographics and behavior.ProblemWhile the impact of some factors, such as weather conditions and the availability of alcohol, on patient presentations at mass gatherings have been described previously, the influence of many other variables, including crowd demographics, crowd behavior, and event type, is poorly understood. Furthermore, a large number of studies reporting on the influence of these variables on patient presentations are based on anecdotal evidence at a single mass-gathering event.MethodsData were collected by trained fieldworkers at 15 mass gatherings in South Australia and included event characteristics, crowd demographics, and weather. De-identified patient records were obtained from on-site health care providers. Data analysis included the calculation of patient proportions in each variable category, as well as the total number of patient presentations per event and the patient presentation rate (PPR).ResultsThe total number of expected attendees at the 15 mass gatherings was 303,500, of which 146 presented to on-site health care services. The majority of patient presentations occurred at events with a mean temperature between 20°C and 25°C. The PPR was more than double at events with a predominantly male crowd compared to events with a more equal sex distribution. Almost 90.0% of patient presentations occurred at events where alcohol was available.Conclusion:The results of the study suggest that several weather, crowd, and event variables influence the type and number of patient presentations observed at mass-gathering events. Given that the study sample size did not allow for these interactions to be quantified, further research is warranted to investigate the relationships between alcohol availability, crowd demographics, crowd mobility, venue design, and injuries and illnesses.Anikeeva O, Arbon P, Zeitz K, Bottema M, Lund A, Turris S, Steenkamp M. Patient presentation trends at 15 mass-gathering events in South Australia. Prehosp Disaster Med. 2018;33(4):368–374.

scholarly journals Implementing Radical Cure Diagnostics for Malaria: User Perspectives on G6PD Testing in Bangladesh

2020 ◽  
Author(s):  
Nora Engel ◽  
Cristian Ghergu ◽  
Mohammad Abdul Matin ◽  
Mohammad Golam Kibria ◽  
Kamala Thriemer ◽  
...  
Keyword(s):  
Health Care Providers ◽  
G6pd Deficiency ◽  
New Technologies ◽  
Routine Practice ◽  
Radical Cure ◽  
Care Providers ◽  
Structured Interviews ◽  
Drug Induced ◽  
User Perspectives ◽  
The Impact

Abstract Background: The radical cure of Plasmodium vivax requires treatment with an 8-aminoquinoline drug, such as primaquine and tafenoquine, to clear the liver of parasites which can reactivate to cause relapsing infections. Safe treatment regimens require prior screening of patients for glucose-6-phosphate dehydrogenase (G6PD) deficiency to avoid potential life-threatening drug induced hemolysis. Testing is rarely available in malaria endemic countries, but will be needed to support routine use of radical cure. This study investigates end-user perspectives in Bangladesh on the introduction of a quantitative G6PD test (SD Biosensor STANDARD™ G6PD analyser) to support malaria elimination.Methods: The perspectives of users on the SD Biosensor test were analysed using semi-structured interviews and focus group discussions with health care providers and malaria programme officers in Bangladesh. Key emerging themes regarding the feasibility of introducing this test into routine practice, including perceived barriers, were analysed.Results: In total 63 participants were interviewed. Participants emphasized the life-saving potential of the biosensor, but raised concerns including the impact of limited staff time, high workload and some technical aspects of the device. Participants highlighted that there are both too few and too many P. vivax patients to implement G6PD testing owing to challenges of funding, workload and complex testing infrastructure. Implementing the biosensor would require flexibility and improvisation to deal with remote sites, overcoming a low index of suspicion and mutual interplay of declining patient numbers and reluctance to test. This approach would generate new forms of evidence to justify introduction in policy and carefully consider questions of deployment given declining patient numbers. Conclusions: The results of the study show that, in an elimination context, the importance of malaria needs to be maintained for both policy makers and the affected communities, in this case by ensuring P. vivax, PQ treatment, and G6PD deficiency remain visible. Availability of new technologies, such as the biosensor, will fuel ongoing debates about priorities for allocating resources that must be adapted to a constantly evolving target. Technical and logistical concerns regarding the biosensor should be addressed by future product designs, adequate training, strengthened supply chains, and careful planning of communication, advocacy and staff interactions at all health system levels.

Health Promotion and Risk Reduction in Congregations

2017 ◽  
Author(s):  
Dennis Myers ◽  
Terry A. Wolfer ◽  
Maria L. Hogan
Keyword(s):  
Health Care ◽  
Health Promotion ◽  
Risk Reduction ◽  
Health Care Providers ◽  
Well Being ◽  
Marital Stability ◽  
Care Providers ◽  
Community Members ◽  
Health Related ◽  
The Impact

A complex web of attitudinal, cultural, economic, and structural variables condition the decision to respond to communications promoting healthy behavior and participation in risk reduction initiatives. A wide array of governmental, corporate, and voluntary sector health-related organizations focus on effective messaging and health care options, increasing the likelihood of choices that generate and sustain wellness. Researchers also recognize the significant and multifaceted ways that religious congregations contribute to awareness and adoption of health-promoting behaviors. These religiously based organizations are credible disseminators of health education information and accessible providers of venues that facilitate wellness among congregants and community members. The religious beliefs, spirituality, and faith practices at the core of congregational cultural life explain the trustworthiness of their messaging, the health of their adherents, and the intention of their care provision. Considerable inquiry into the impact of religion and spirituality on health reveals substantive correlations with positive psychological factors known to sustain physical and psychological health—optimism, meaning and purpose, hope, well-being, self-esteem, gratefulness, social support, and marital stability. However, the beliefs and practices that create receptivity to health-related communications, care practices, and service provision can also be a deterrent to message impact and participation in healthy behaviors. When a productive relationship between spirituality and health exists, congregational membership offers rituals (e.g., worship, education, mission) and relationships that promote spiritual well-being. Research demonstrates increased life satisfaction and meaning in life, with health risk reduction associated with a sense of belonging, enriched social interactions, and shared experiences. Congregations communicate their commitment to wellness of congregants and community members alike through offering a variety of congregationally based and collaborative wellness and risk reduction programs. These expressions of investment in individual and community health range across all age, gender, and ethnic demographics and address most of the prominent diagnostic categories. These programs are ordered along three dimensions: primary prevention (health care messaging and education), secondary prevention (risk education), and tertiary prevention (treatment). Applying the dimensions of sponsorship, goal/mission, focus, services, staffing, and intended outcome highlights the similarities and differences among them. Several unique facets of congregational life energize the effectiveness of these programs. Inherent trust and credibility empower adherence, and participation decisions and financial investment provide service availability. These assets serve as attractive contributions in collaborations among congregations and between private and public health care providers. Current research has not yet documented the best practices associated with program viability. However, practice wisdom in the planning, implementation, and evaluation of congregationally based and collaborative health-related programs suggests guidelines for future investigation. Congregational leaders and health care professionals emphasize well-designed needs assessment. Effective congregational health promotion and risk reduction may be linked to the availability and expertise of professionals and volunteers enacting the roles of planner/program developer, facilitator, convener/mediator, care manager/advocate, health educator, and direct health care service provider.

Improving infectious TB education for foreign-born patients and family members

2021 ◽  
pp. 001789692110615
Author(s):  
Nancy Bedingfield ◽  
Bonnie Lashewicz ◽  
Dina Fisher ◽  
Kathryn King-Shier
Keyword(s):  
Family Member ◽  
Health Care Providers ◽  
Family Members ◽  
Large City ◽  
Well Being ◽  
Care Providers ◽  
Foreign Born ◽  
Structured Interviews ◽  
Negative Impacts ◽  
Many Sources

Objective: In low tuberculosis (TB) incidence countries, linguistic and cultural dissonance between families experiencing infectious TB and TB health care providers is a barrier to effective communication and successful treatment. The purpose of this research was to explore infectious TB education and counselling from the perspective of patients and family members who are foreign-born. Design/Setting: One component of a multiphase, qualitative case study conducted in Calgary, a large city in western Canada. Method: Data were collected through semi-structured interviews, chart review and field notes and analysed thematically. Eight families were represented in the 6 patient and 13 family member participants who had recently experienced infectious TB. Results: Three themes were generated from the data: ‘learning about TB from many sources’, ‘reassurance and connection’ and ‘missing information’. Participants described learning about TB in different ways, feeling reassured once they knew more and sharing information with others. Overall, participants expressed satisfaction with education and counselling received. However, there were indications that communication problems had occurred. Participants asked questions during the interview, described areas of lingering confusion and shared TB-related behaviours incongruent with medical understanding. Knowledge gaps often increased isolation. Conclusion: Gaps in infectious TB education and counselling have negative impacts on patient and family member well-being. Education and counselling can be improved using multiple modes of communication, proactively addressing common misperceptions and reducing barriers to patient participation. Improvements could empower families to better manage their own experience and share accurate TB information with their communities.

Sources and Impact of Work-Related Stress Among HIV/AIDS Health Care Providers in Guangxi, China: A Qualitative Research

2019 ◽  
Vol 68 (2) ◽  
pp. 81-91
Author(s):  
Huiru Tong ◽  
Xiaoming Li ◽  
Shan Qiao ◽  
Yuejiao Zhou ◽  
Zhiyong Shen ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Well Being ◽  
People Living With Hiv ◽  
Care Providers ◽  
Work Related Stress ◽  
Work Related ◽  
Related Stress ◽  
The Impact ◽  
Hiv Aids

Work-related stress can negatively impact health care providers’ (HCPs) ability to provide care. We examined the sources of work-related stress experienced by HCPs who provided medical care for people living with HIV/AIDS and the impact of the stress on HCPs’ well-being and work performance. We conducted in-depth interviews with 46 HIV/AIDS HCPs in Guangxi, China. The interviews were audio-recorded, transcribed, and imported into NVivo V.11 for data management and data analysis using a thematic approach. We found that the key sources of stress at work included general work-related sources and HIV/AIDS-related sources. All stress was seen to have a substantial impact on the HCPs’ individual well-being, family and social life, and quality of care they provided. We recommended that government and health care facilities should take measures to improve institutional culture and professional development for HIV/AIDS HCPs. More professional training schemes should be provided to strengthen HCPs’ competence, improve universal protection from occupational exposure, and reduce the stigma toward HIV/AIDS patients and their care providers.

scholarly journals Leveraging Smart Health Technology to Empower Patients and Family Caregivers in Managing Cancer Pain: Protocol for a Feasibility Study

10.2196/16178 ◽  
2019 ◽  
Vol 8 (12) ◽  
pp. e16178 ◽  
Author(s):  
Virginia LeBaron ◽  
James Hayes ◽  
Kate Gordon ◽  
Ridwan Alam ◽  
Nutta Homdee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Pain ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Patients With Cancer ◽  
Smart Watch ◽  
Smart Health

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

Sign in / Sign up

Export Citation Format

Share Document