Family Caregivers on the Frontline: Challenges of Providing Care to Post-ICU COVID-19 Patients

Abstract Family caregivers are essential care providers helping to ensure the sometimes complicated recovery of recently hospitalized COVID-19 patients. COVID-19 caregivers face pandemic-specific challenges such as not being at patient bedside throughout the hospital stay and managing social distancing post-discharge. The current study aims to explore the unique experiences of family caregivers of Intensive Care Unit (ICU) COVID-19 patients. In-depth qualitative interviews were conducted by web conference with 13 dyads of adults who were in an ICU for COVID-19 between March and August 2020 and their primary caregiver (n=26). Participants were interviewed about the care recipient’s hospitalization and recovery journey, supports received, challenges experienced, and gaps in the system of care. Thematic qualitative analysis was conducted utilizing Watkins’ (2017) rigorous and accelerated data reduction (RADaR) technique. Caregivers played a critical role in patient admission, discharge, and recovery. Themes of caregiving challenges included self-management of COVID-19 infection, knowledge deficits of available resources and post-discharge care needs, post-infection stigma, separation guilt, deprioritized self-care, financial challenges, and lengthy recoveries with some ongoing health needs. While receipt of emotional support was considered an advantage, some caregivers expressed contact fatigue. Understanding how COVID caregivers experience illness management across the recovery journey can aid our understanding of the COVID caregiving process and identify intervention targets to improve overall health and well-being of the care dyad.

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

International Psychogeriatrics ◽

10.1017/s1041610220002604 ◽

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.

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

Journal of Applied Gerontology ◽

10.1177/0733464818820773 ◽

2018 ◽

Vol 39 (5) ◽

pp. 509-518 ◽

Cited By ~ 1

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.

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The experiences of family caregivers of people with severe mental illness in the Middle East: A systematic review and meta-synthesis of qualitative data

PLoS ONE ◽

10.1371/journal.pone.0254351 ◽

2021 ◽

Vol 16 (7) ◽

pp. e0254351

Author(s):

Aisha Hamed Alyafei ◽

Taghrid Alqunaibet ◽

Hassan Mansour ◽

Afia Ali ◽

Jo Billings

Keyword(s):

Systematic Review ◽

Mental Illness ◽

Middle East ◽

Severe Mental Illness ◽

Family Caregivers ◽

Critical Role ◽

Geographical Area ◽

Well Being ◽

Negative Consequences ◽

Middle East Countries

Background There is a wealth of literature exploring the experiences of family caregivers of people with severe mental illness (SMI) in western countries, however, this topic has been neglected in the Middle East, despite families being the main source of caregiving in this context. The purpose of this review was to conduct a systematic review and qualitative meta-synthesis to explore the experiences of family caregivers living in countries in the Middle East caring for a relative with severe mental illness. Methods A systematic review and meta-synthesis were conducted, to comprehensively gain a thorough and detailed overview of what is known about family caregivers’ experiences from published qualitative research in the Middle East geographical area from inception to May 2021. The review protocol was pre-registered with PROSPERO (Ref: CRD42020165519). Results The review identified twelve qualitative studies that explored caregivers’ experiences of caring for relatives with SMI in Middle East countries. Family caregivers’ experiences were captured under seven overarching themes. The participants across all studies reported negative consequences of providing care, increased burden and emotional distress. Many experienced issues with family/marital relationships and stigmatizing attitudes and behaviours from their communities. Caregivers expressed the need for increased support which was perceived to have a critical role in improving family caregivers’ experiences. Conclusions The meta-synthesis revealed many challenges and issues that affect caregivers of people with SMI in the Middle East. Family caregivers experienced distress and burden, and reported significant impact on their psychological well-being. Their experiences highlight the urgent need to provide more support for family caregivers in Middle East countries.

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Abstract P847: Exploring the Perspective of Patient Recipients of a Provider and Systems-Level Intervention - A Mixed Methods Analysis From the Care Transitions and Hypertension Management (catch) Program for Ischemic Stroke Study

Stroke ◽

10.1161/str.52.suppl_1.p847 ◽

2021 ◽

Vol 52 (Suppl_1) ◽

Author(s):

Jason J Sico ◽

Laura Burrone ◽

Brenda Fenton ◽

Manali Phadke ◽

Jan-Michael Ragunton ◽

...

Keyword(s):

Patient Care ◽

Clinical Pharmacy ◽

Qualitative Interviews ◽

Care Transitions ◽

Care Program ◽

Lean Six Sigma ◽

Hypertension Management ◽

Care Providers ◽

Post Discharge ◽

Project File

Introduction: The CAre Transitions and Hypertension management (CATcH) program was developed using Lean Six Sigma methodology and is a bundled, multi-faceted, provider- and healthcare systems-level pilot-intervention designed to enhance care coordination. Components of the intervention included: education delivered during the hospitalization, increased utilization of clinical pharmacy and home telehealth for blood pressure (BP) monitoring, and a patient care navigator. Hypothesis: Recipients of CATcH will find the program valuable though engaging with additional care providers may be deemed onerous. Methods: Twenty-eight semi-structured qualitative interviews were conducted between June 2018 and June 2019 among CATcH recipients. Interviews were audio-recorded, transcribed, and entered into an ATLAS.ti. project file. Thematic Content Analysis was used to analyze coded data, generate, and validate findings. Themes related to the overall impression of CATcH and its individual components were investigated across all patients and stratified by age, race, sex, and when they were discharged in relation to beginning of CATcH implementation. Results: A total of 108 Veterans were the recipients of CATcH. All patients received education, patient care navigator services, and offered both clinical pharmacy and telehealth services, with 52/108 (48.1%) attending clinical pharmacy appointments and 37/108 (34.3%) utilizing telehealth services within 6-months post-discharge. Subjects interviewed were on average 68.6±8.2 years of age, predominantly male (26/28; 92.9%) and equally distributed among black and non-black races. Themes were largely positive with patients expressing they were unaware that they were the recipients of an enhanced care program, and that CATcH. Patients who received CATcH in the second half of the program reported better care collaboration and more useful educational materials that those enrolled earlier in the project. Conclusions: Patients found the CATcH program and its component parts useful in the ongoing management of post-stroke BP control. Continuous self-evaluation and refinement of the program throughout the intervention period likely contributed to improvements in care collaboration and education.

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Crohn's Disease — More Than a Chronic Illness

Occupational Health Nursing ◽

10.1177/216507998503301205 ◽

1985 ◽

Vol 33 (12) ◽

pp. 604-609

Author(s):

Roberta Messner ◽

Sylvia Gardner ◽

Susan Lewis

Keyword(s):

Crohn’S Disease ◽

Crohn's Disease ◽

Interpersonal Relationships ◽

Well Being ◽

Primary Care Providers ◽

Chronic Inflammatory Bowel Disease ◽

Care Providers ◽

Care Needs ◽

Positive Effects ◽

Optimal Health

Crohn's disease is a chronic, inflammatory bowel disease which may occur in single or multiple areas of the entire GI tract from the mouth to the anus. This multifaceted disorder is manifested by various unpredictable health disturbances, affecting its victims' physical and psychosocial well-being. Individuals with Crohn's disease present a multitude of nursing challenges as they often lack the positive effects of proper nutrition, physical activity, emotional expression, interpersonal relationships, and family life. Nurses are the primary care providers who can comprehensively address the varied and complex health care needs of individuals with Crohn's disease. The core theme is the belief that it is essential for these individuals to maintain a sense of control in the midst of an altered lifestyle. Occupational health nurses can assist employees with Crohn's disease to develop a variety of physical and psychosocial strategies to cope with the unpleasant, even repugnant, aspects of a disease for which there is no known cure. The promotion of optimal health, based on the nursing process, is the objective toward which the unique efforts of nursing are directed.

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Including Patient Input In Patient-Reported Outcome Instrument Development: Examples From the MDASI-CML

Blood ◽

10.1182/blood.v116.21.2573.2573 ◽

2010 ◽

Vol 116 (21) ◽

pp. 2573-2573

Author(s):

Loretta A Williams ◽

Jorge E. Cortes ◽

Patricia S Ault ◽

Araceli Garcia-Gonzalez ◽

Janet L Williams ◽

...

Keyword(s):

Family Caregivers ◽

Expert Panel ◽

Qualitative Interviews ◽

The United States ◽

Psychometric Validation ◽

Cognitive Debriefing ◽

Care Providers ◽

The Core ◽

Outcome Instrument ◽

Patient Reported

Abstract Abstract 2573 Introduction: The United States Food and Drug Administration (FDA) recognizes patient-reported outcomes (PROs) as acceptable measures of treatment benefit and risk in medical product clinical trials. The FDA requires that patient input be included in the development and testing of PRO instruments. We have adopted a three-step process for the development of multi-symptom PROs that includes patient input in each step. This method is being used for the development of the M. D. Anderson Symptom Inventory (MDASI) for Philadelphia-chromosome-positive chronic myeloid leukemia (CML). The MDASI is a PRO measure of symptom burden, defined as the combined impact of all disease-related and therapy-related symptoms on one's ability to function as one did before the onset of disease or therapy, in patients with cancer. The core MDASI includes 13 symptom severity items and 6 interference items rated at their worst in the last 24 hours on a 0–10 scale, with 0 meaning no symptom or interference and 10 meaning as bad as can be imagined or complete interference. Patients and Methods: The first step in the process was qualitative interviews with 35 patients with CML about their symptom experiences. Symptoms were extracted by descriptive exploratory analysis from interview transcripts. Step 2 was grading of the relevance of the symptoms (0 to 4 scale) from Step 1 by an expert panel that included professional care providers as well as patients with CML and their family caregivers. Symptoms that received a mean relevance rating of ≥ 3 were added to the 13 symptom items and 6 interference items of the core MDASI for validation in Step 3. One hundred and sixty patients with CML are completing the experimental MDASI-CML, which will undergo psychometric validation and item reduction. The first 30 patients in Step 3 completed a cognitive debriefing interview about their experience of completing the MDASI-CML. Results: Patient characteristics are in Table 1. No personal information was collected on the expert panel members. Thirty-nine symptoms (13 core and 26 CML-specific) were extracted from the Step 1 qualitative interviews and rated by the expert panel. Four physicians, 5 nurses, 3 patients, and 3 family caregivers returned ratings. Six of the 26 CML-specific items had mean relevance ratings of ≥ 3. The experimental MDASI-CML includes the 13 core symptoms, 6 CML-specific symptoms, and 6 core interference items (Table 2). During the cognitive debriefing, over 80% of patients reported that the MDASI-CML items were not at all difficult to complete or understand, were completely comfortable to answer, and were not repetitive, and that the 0–10 scoring system for rating severity of symptoms and interference with daily activities was very easy to use. Nine patients listed 12 additional symptoms that should be included, but each symptom was only mentioned by 1 patient and had already been eliminated because of low relevance ratings by the expert panel. Conclusions: Inclusion of patient input at each step of PRO development ensures that the instrument measures what is important to patients and enhances content validity. It further ensures that the measure is easy to understand and complete. Psychometric validation of the MDASI-CML is proceeding. Disclosure: No relevant conflicts of interest to declare.

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Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a protocol for a scoping review

BMJ Open ◽

10.1136/bmjopen-2017-018247 ◽

2017 ◽

Vol 7 (12) ◽

pp. e018247 ◽

Cited By ~ 6

Author(s):

Elana Commisso ◽

Katherine S McGilton ◽

Ana Patricia Ayala ◽

Melissa, K Andrew ◽

Howard Bergman ◽

...

Keyword(s):

Older Adults ◽

Family Caregivers ◽

Scoping Review ◽

Chronic Conditions ◽

Social Care ◽

Grey Literature ◽

Well Being ◽

Multiple Chronic Conditions ◽

Care Needs ◽

Health And Social Care

IntroductionPeople are living longer; however, they are not necessarily experiencing good health and well-being as they age. Many older adults live with multiple chronic conditions (MCC), and complex health issues, which adversely affect their day-to-day functioning and overall quality of life. As a result, they frequently rely on the support of friend and/or family caregivers. Caregivers of older adults with MCC often face challenges to their own well-being and also require support. Currently, not enough is known about the health and social care needs of older adults with MCC and the needs of their caregivers or how best to identify and meet these needs. This study will examine and synthesise the literature on the needs of older adults with MCC and those of their caregivers, and identify gaps in evidence and directions for further research.Methods and analysisWe will conduct a scoping review of the peer-reviewed and grey literature using the updated Arksey and O’Malley framework. The literature will be identified using a multidatabase and grey literature search strategy developed by a health sciences librarian. Papers, reports and other materials addressing the health and social care needs of older adults and their friend/family caregivers will be included. Search results will be screened, independently, by two reviewers, and data will be abstracted from included literature and charted in duplicate.Ethics and disseminationThis scoping review does not require ethics approval. We anticipate that study findings will inform novel strategies for identifying and ascertaining the health and social care needs of older adults living with MCC and those of their caregivers. Working with knowledge-user members of our team, we will prepare materials and presentations to disseminate findings to relevant stakeholder and end-user groups at local, national and international levels. We will also publish our findings in a peer-reviewed journal.

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Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada (Preprint)

10.2196/preprints.32609 ◽

2021 ◽

Author(s):

Amanda D Santos ◽

Vera Caine ◽

Paula J Robson ◽

Linda Watson ◽

Jacob C Easaw ◽

...

Keyword(s):

Health Care ◽

Family Caregivers ◽

Clinical Information ◽

The United States ◽

Patient Portal ◽

Health Care Needs ◽

Care Providers ◽

Patient Portals ◽

Care Needs ◽

Oncology Patients

BACKGROUND With the current proliferation of clinical information technologies internationally, patient portals are increasingly being adopted in health care. Research, conducted mostly in the United States, shows that oncology patients have a keen interest in portals to gain access to and track comprehensive personal health information. In Canada, patient portals are relatively new and research into their use and effects is currently emerging. There is a need to understand oncology patients’ experiences of using eHealth tools and to ground these experiences in local sociopolitical contexts of technology implementation, while seeking to devise strategies to enhance portal benefits. OBJECTIVE The purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta’s unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities. METHODS This qualitative descriptive study employed individual semistructured interviews and demographic surveys with 11 participants. Interviews were audio-recorded and transcribed verbatim. Data were analyzed thematically. The study was approved by the University of Alberta Human Research Ethics Board. RESULTS Participants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta’s patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants’ broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient–provider relationship. CONCLUSIONS Although people diagnosed with cancer and their family caregivers considered an online patient portal as beneficial, they identified several areas that limit how portals support their oncology care. Providers of health care portals are invited to recognize these limitations and work toward addressing them.

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A Proposed Architecture to Sustain Public-Private Partnership

Theory and Practice of Business Intelligence in Healthcare - Advances in Healthcare Information Systems and Administration ◽

10.4018/978-1-7998-2310-0.ch009 ◽

2020 ◽

pp. 185-199

Author(s):

Mohan Tanniru ◽

Mark Martz

Keyword(s):

Service Delivery ◽

Health Care Providers ◽

Healthcare Providers ◽

Transition Services ◽

Care Providers ◽

Post Discharge ◽

Care Services ◽

Discharge Care ◽

Quality Of Patient Care

Information technology has enabled tertiary health care providers to improve patient access to preventive and post-discharge care transition services. When such services are supported by facilities that are under the control of the hospital, hospitals can still influence the delivery and overall quality of patient care services. However, for a variety of reasons, many hospitals rely on external care providers who operate relatively independently from the hospital to deliver these services. As such, service delivery intended to create efficiency and value to patients can become complex, challenging to deliver, and resource intensive—especially if the service delivery spans a prolonged time horizon. This chapter discusses one case of an intermediary who helps hospitals address the smoking cessation needs of patients. Using service dominant logic research, the service exchanges among three different ecosystems (healthcare providers, intermediary, and patients) are modeled and intelligence needed to align their goals using blockchain architecture is highlighted.

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Caring for Thai Older Persons With Long-Term Care Needs

Journal of Aging and Health ◽

10.1177/0898264318798205 ◽

2018 ◽

Vol 30 (10) ◽

pp. 1516-1535 ◽

Cited By ~ 4

Author(s):

John Knodel ◽

Bussarawan Teerawichitchainan ◽

Wiraporn Pothisiri

Keyword(s):

Family Member ◽

Older Persons ◽

Long Term Care ◽

Population Aging ◽

Well Being ◽

Care Providers ◽

Situation Analysis ◽

Care Needs ◽

Term Care

Objective: To provide a situation analysis of recent long-term care (LTC) needs among older persons in Thailand. Method: The 2014 Survey of Older Persons in Thailand (SOPT) provides data to assess patterns of caregiving, whether care needs are met, and who are main caregivers for older Thais. We examine how types of familial and nonfamilial caregivers are associated with the well-being of older persons. Results: The need for LTC increases sharply with age and is more common among women than men. Spouses and children constitute approximately 90% of main caregivers. The association of a family member as the main caregiver and education or value of assets is quite weak underscoring the general normative prescription for family members to serve as care providers. Discussion: Thailand is experiencing acute population aging but empirical evidence to support LTC needs remains lacking. This analysis helps close the gap.

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