Perspectives Of Family Caregivers Research Articles

Paid Caregiving in Dementia Care Over Time: Paid Caregiver, Family Caregiver, and Geriatrician Perspectives.

As long-term care increasingly moves from facilities to the community, paid caregivers (e.g., home health aides, other home care workers) will play an increasingly important role in the care of people with dementia. This study explores the paid caregiver role in home-based dementia care and how that role changes over time. We conducted individual, longitudinal interviews with the paid caregiver, family caregiver, and geriatrician of 9 people with moderate to severe dementia in the community; the 29 total participants were interviewed on average 3 times over 6 months, for a total of 75 interviews. Interviews were recorded, transcribed, and analyzed with structured case summaries and framework analysis. Paid caregivers took on distinct roles in the care of each client with dementia. Despite changes in care needs over the study period, roles remained consistent. Paid caregivers, family caregivers, and geriatricians described the central role of families in driving the paid caregiver role. Paid and family caregivers collaborated in the day-to-day care of people with dementia; paid caregivers described their emotional relationships with those they cared for. Rather than simply providing functional support, paid caregivers provide nuanced care tailored to the needs and preferences of not only each person with dementia (i.e., person-centered care), but also their family caregivers (i.e., family-centered care). Deliberate cultivation of person-centered and family-centered home care may help maximize the positive impact of paid caregivers on people with dementia and their families.

"You Take This Day by Day, Come What May": A Qualitative Study of the Psychosocial Impacts of Living with Duchenne Muscular Dystrophy.

Studies have reported health-related quality-of-life impacts of Duchenne muscular dystrophy (DMD); however, further research is needed to understand how those with DMD experience their condition and how psychosocial impacts evolve over time in response to disease progression. This qualitative study explores the social and emotional implications of key transitions, challenges and adaptations throughout the disease course from the perspective of patients and family caregivers. Semi-structured interviews were conducted with men and boys with DMD, and/or their caregivers, in the USA. Thematic analysis was used to examine patterns in data collected across the interviews. Nineteen participants were included. Three major themes were identified: (1) barriers to participation are multifaceted; (2) an emotional journey shaped by 'inevitable progression;' (3) family provides critical tangible and emotional support. This study illustrates that psychosocial impacts of DMD are shaped by knowledge of the condition's natural history alongside other factors including the extent of social barriers, personal growth and adaptation, and family support. Findings provide insight into the strength and resilience with which individuals and their families respond to daily challenges and major clinical milestones and highlight the relative importance of loss of upper limb function as a transition in DMD affecting health-related quality-of-life.

Perspectives of family caregivers and nurses on hospital discharge transitional care for Muslim older adults living with COPD: a qualitative study

BackgroundThe increased number of emergency department visits among older adults living with chronic obstructive pulmonary disease reflects the challenges of hospital discharge transition, especially in those from a cultural minority. The barriers and facilitators of this discharge from the perspective of formal and informal care providers, such as nurses and family caregivers, are important to identify to provide effective symptom management and quality of care. The purpose of this study was to describe the barriers and facilitators in caring for Muslim older adults with chronic obstructive pulmonary disease (COPD) during hospital discharge transitional care.MethodsA descriptive qualitative study was conducted in a hospital of Thailand where Muslim people are a cultural minority. Thirteen family caregivers of Muslim older adults living with COPD and seven nurses were purposively recruited and participated in semi-structured interviews and focus group discussions. Content analysis was used to analyze the data.ResultsFive barriers and three facilitating factors of transitional care for Muslim older adults living with COPD were outlined. Barriers included: (1) lack of knowledge about the causes and management of dyspnea, (2) inadequate discharge preparation, (3) language barrier, (4) discontinuity of care, and (5) COVID-19 epidemic. Facilitators included: (1) the ability to understand Malayu language, (2) the presence of healthcare professionals of the same gender, and (3) the presence of Muslim healthcare providers.ConclusionFamily caregivers require more supportive care to meet the care needs of Muslim older adults living with COPD. Alternative nurse-based transitional care programs for these older adult caregivers should be developed.

Orchestrating Care: A Grounded Theory Study of Family Caregiving for Older Adults in Rural Areas.

Family caregivers provide the majority of long-term care and support of older adults as they age or approach the end of life. Studies often refer to family caregivers as invisible because the American healthcare system, public policy, and society do not support or recognize their work. Family caregivers who provide care to older adults who live in rural areas face unique challenges due to the rural environment. The purpose of this study was to inductively develop a theoretical framework that explains the process of family caregiving to older adults who live at home in rural areas and require daily assistance while exploring their experiences regarding access, utilization, challenges, and effectiveness of patient healthcare services and caregiver resources in rural areas. The grounded theory method of Strauss and Corbin was used for sampling, data collection, and data analysis. Fifteen family caregivers who oversaw and/or provided care on a daily basis to an older adult living in two rural counties of New York State participated in the study. Data were collected through two semi-structured interviews with each participant, yielding 30 interviews. Findings revealed that family caregivers engaged in the process of orchestrating care by growing into caregiving, integrating technology, and utilizing networks when providing and managing caregiving. Understanding caregiving from the perspective of family caregivers engaged in the process can inform healthcare practice, healthcare education, and public policy and can support better outcomes for both older adults and their family caregivers.

Clinician and Family Caregiver Perspectives on Deprescribing Chronic Disease Medications in Older Nursing Home Residents Near the End of Life.

Nursing home (NH) residents with limited life expectancy (LLE) who are intensely treated for hyperlipidemia, hypertension, or diabetes may benefit from deprescribing. This study sought to describe NH clinician and family caregiver perspectives on key influences on deprescribing decisions for chronic disease medications in NH residents near the end of life. We recruited family caregivers of veterans who recently died in a Veterans Affairs (VA) NH, known as community living centers (CLCs), and CLC healthcare clinicians (physicians, nurse practitioners, physician assistants, pharmacists, registered nurses). Respondents completed semi-structured interviews about their experiences with deprescribing statin, antihypertensive, and antidiabetic medications for residents near end of life. We conducted thematic analysis of interview transcripts to identify key themes regarding influences on deprescribing decisions. Thirteen family caregivers and 13 clinicians completed interviews. Key themes included (1) clinicians and caregivers both prefer to minimize drug burden; (2) clinical factors strongly influence deprescribing of chronic disease medications, with differences in how clinicians and caregivers weigh specific factors; (3) caregivers trust and rely on clinicians to make deprescribing decisions; (4) clinicians perceive caregiver involvement and buy-in as essential to deprescribing decisions, which requires time and effort to obtain; and (5) clinicians perceive conflicting care from other clinicians as a barrier to deprescribing. Findings suggest a need for efforts to encourage communication with and education for family caregivers of residents with LLE about deprescribing, and to foster better collaboration among clinicians in CLC and non-CLC settings.

Exploring the barriers to mental health service utilization in the Bolgatanga Municipality: the perspectives of family caregivers, service providers, and mental health administrators

BackgroundMental health service utilization remains a challenge in developing countries, with numerous barriers affecting access to care. Albeit data suggest poor utilization of mental health services in the Bolgatanga Municipality in Ghana, no studies have explored the barriers to the utilization of mental health services. Therefore, this study explored the perspectives of family caregivers, service providers, and mental health service administrators on the barriers to mental health service utilization in the Bolgatanga Municipality, Ghana.MethodsA qualitative descriptive design was employed for the study. Nineteen participants were purposively sampled from two hospitals including fifteen family caregivers, two service providers, and two mental health administrators. Data were collected through individual in-depth interviews using a semi-structured interview guide. Audio-recorded interviews were transcribed verbatim and thematically analyzed using NVivo 12 pro software.ResultsFive main themes emerged including individual-level barriers, interpersonal barriers, community-level barriers, organizational-level barriers, and policy-level barriers. At the individual level, lack of insight, poor treatment compliance, and financial challenges were prominent barriers. Interpersonal barriers included family pressure influenced by cultural and spiritual beliefs. At the community level, stigma and mental health illiteracy were identified as significant barriers. At the organizational level, barriers encompassed inadequate staffing, limited space, and staff attitudes. Policy-level barriers included the neglect of mental health in policies and the non-inclusion of mental health services in the National Health Insurance Scheme.ConclusionThis study highlights the complexity of barriers to mental health service utilization and underscores the need for a comprehensive approach to address them. Collaborative efforts involving healthcare providers, policymakers, communities, and families are essential to mitigate these barriers. It is imperative to consider these barriers when developing strategies to improve the utilization of mental health services in Ghana.

Methodological Proposal for the Adaptation of the Living with Long-Term Conditions Scale to the Family Caregiver.

(1) Background: Living with long-term conditions affects both patients and family caregivers. To obtain a more complete overview of this phenomenon, a measurement instrument is needed that includes both perspectives. The aim is to adapt a scale to family caregivers of individuals with long-term conditions. (2) Methods: A methodological proposal is presented that illustrates the adaptation of the EC-PC scale to the family caregiver. Three phases are proposed: adaptation of the items, panel of experts, and pre-test. (3) Results: In the adaptation phase, the items from the original EC-PC were modified to adapt them to the family caregiver, and new items were added associated with the differences in living with LTC from the perspective of family caregivers. In the panel of experts phase, a universal agreement was reached related to the clarity, relevance, and essentiality of the items included. In the pre-test phase, the content of the scale was verified quantitatively and qualitatively. (4) Conclusions: The content of the items of version 5 of the EC-PC-Family showed a high index of inter-judge agreement. When a phenomenon affects both patients and their environment, such as living with LTC, it is necessary to include both perspectives in the measurement tools.

Factors associated with quality of life among elderly patients with type 2 diabetes mellitus: the role of family caregivers.

As a long-term chronic disease, Type 2 diabetes mellitus (T2DM) patients' quality of life is affected by both themselves and his/ her close relatives, requiring comprehensive support from family members to ensure that patients are able to manage disease. The objective of this study is to investigate the relationship between caregivers' sense of coherence, caregiver competence, and T2DM patients' quality of life, as well as to explore the factors affecting patients with T2DM patients. This investigation was a cross-sectional study. Between October 2022 and July 2023, 392 participant-caregiver dyads from two hospitals in Jinzhou City, Liaoning Province, were researched. Participants were investigated by General Characteristics Questionnaire, Modified Barthel Index (MBI), Diabetes Specific Quality of Life Scale (DSQLS), Sense of Coherence scale-13 (SOC-13), and Family Caregiver Task Inventory (FCTI). Data were statistically analyzed using SPSS 25. Univariate and multivariate linear regression analyses were used to identify the independent factors associated with the quality of life of elderly patients with T2DM. The average score of T2DM quality of life was 61.14 (SD = 7.37), quality of life was negatively correlated with sense of coherence (r=-0.344, P<0.01) and positively correlated with caregiver competence (r = 0.522, P<0.01). Furthermore, we found that age, disease duration, activities of daily living scores, sense of coherence, and caregiver competence scores were the main predictors of quality of life (R2 = 0.375, P < 0.001). This study found that high levels of sense of coherence and caregiver competence in family caregivers were associated with better quality of life for patients. Furthermore, we also found that good quality of life was also related to younger age, shorter disease duration, and less dependence. This study offers a feasible example for policymakers to improve the quality of life from the perspective of T2DM patients' family caregivers.

Using the Carers' Alert Thermometer tool to identify needs and support family caregivers of people with motor neurone disease: moving beyond needs assessments.

Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of this pilot study was to assess the feasibility and relevance of the Carers' Alert Thermometer (CAT) in home-based care, from the perspective of MND family caregivers. The tool provides a formal structure to facilitate discussions with caregivers to enable needs to be addressed. This mixed-method study was conducted in Western Australia (2020-2021). Forty-one caregivers and five MND Advisors participated in trialling the CAT intervention which consisted of two encounters with Advisors (6-8 weeks apart) to identify and address support needs through action plans. Caregivers' feedback was obtained via telephone interviews and a thematic analysis was undertaken. Thirty caregivers completed two CAT assessments. Caregivers identified support priorities of managing their feelings and worries, providing emotional or spiritual care, information about the person's condition and how their care needs might change. Seventeen caregivers were interviewed and found that this assessment process adequately addressed their needs and it should be continued, it brought the focus onto them to clarify problems and work through solutions. The improvements that were suggested by them, including better information/education in palliative care, led to the development of an online support/information toolkit, which served to empower caregivers and staff by accessing relevant information and resources. The CAT demonstrated utility for triaging caregivers most in need of additional support and those whom signposting to additional information and self-directed access to support was most appropriate. For any tool to become an integrated part of care, service provider support is key for implementation, allowing for the time resource required and an appropriate education and support structure. MND Associations have an important role in building stronger partnerships with supportive community networks, through compassionate communities models of care, to address the identified needs of MND families in a more sustainable and wholistic manner. Needs assessment is a means towards building this capacity between formal and informal networks.

Perspectives of family caregivers, health professionals, and support providers on partnership issues in adult psychiatry

Family caregivers play an essential role in the continuity of care for patients with mental health problems. However, the lack of consideration for their role and difficulties in their collaboration with health professionals impact their involvement. The purpose of this study is to identify the issues underlying the family-professional partnership. A qualitative and exploratory study is used to collect data from providers of support services, family caregivers of patients with psychiatric disorders, and mental health professionals. Semi-structured interviews and focus groups conducted from October 2017 to August 2018 were analyzed to determine key issues surrounding this partnership. A total of thirty-two family caregivers, nine healthcare professionals, and eleven providers participated in the study. The central concerns related to the partnership are information, continuity of care, and the relationship between patients, family members, and professionals. The relational dimension appears to be an important element for all three groups of participants, who nevertheless point out difficulties with regard to their positioning in this tripartite relationship. In the context of the current healthcare system, the concept of partnership creates obstacles to family caregivers being able to contribute their expertise while feeling recognized by the other actors.

THE ESSENTIAL ROLE OF PAID CAREGIVERS IN HOME-BASED DEMENTIA CARE

Abstract Paid caregivers (e.g., home health aides, other home care workers) provide essential support to the rapidly growing number of people with dementia living in the community. This symposium presents innovative findings on the role of paid caregivers in home-based dementia care though exploration of the clinical, family, and care-delivery contexts in which paid caregivers work. First, Reckrey et al describe the scope of paid caregiving in dementia using nationally representative data examining factors associated with receipt of paid care among older adults with overlapping dementia and non-dementia serious illness. Next, we examine mechanisms of delivering paid care: Osakwe et al explore paid caregiver perceptions about the use of telehealth in home health and identify paid caregivers concerns about routine use of this technology in care of people with dementia, and Gordon-Wexler et al explore family caregiver perspectives on navigating Medicare and Medicaid insurance for people with advanced dementia and the challenges they experience coordinating paid care. Finally, we explore how paid caregivers work with other care team members. Quach et al discuss multidisciplinary perspectives about how paid caregivers support person-centered and relationship-centered care to family dementia caregivers, while Fabius et al examine information sharing practices within home care agencies and describe differences and similarities in information sharing needs for people with and without dementia. Taken together, these presentations highlight the important ways that paid caregivers work with providers and families within the care delivery system and identify ways to better support and integrate these essential workers into dementia care teams. This is a Paid Caregiving Interest Group Sponsored Symposium.

Family caregiver perspectives on strengths and challenges in the care of pediatric injury patients at a tertiary referral hospital in Northern Tanzania.

Pediatric injuries are a leading cause of morbidity and mortality in low- and middle-income countries (LMICs). It is important that injured children get quality care in order to improve their outcomes. Injured children are nearly always accompanied by family member caregivers invested in their outcome, and who will be responsible for their recovery and rehabilitation after discharge. The purpose of this study was to identify family member caregiver perspectives on strengths and challenges in pediatric injury care throughout hospitalization at a tertiary hospital in Northern Tanzania. This study was conducted at a zonal referral hospital in Northern Tanzania. Qualitative semi-structured in-depth interviews (IDIs) were conducted by trained interviewers who were fluent in English and Swahili in order to examine the strengths and challenges in pediatric injury care. IDIs were completed from November 2020 to October 2021 with 30 family member caregivers of admitted pediatric injured patients. De-identified transcripts were synthesized in memos and analyzed through a team-based, thematic approach informed by applied thematic analysis. Strengths and challenges were identified throughout the hospital experience, including emergency medicine department (EMD) care, inpatient wards care, and discharge. Across the three phases, strengths were identified such as how quickly patients were evaluated and treated, professionalism and communication between healthcare providers, attentive nursing care, frequent re-evaluation of a patient's condition, and open discussion with caregivers about readiness for discharge. Challenges identified related to lack of communication with caregivers, perceived inability of caregivers to ask questions, healthcare providers speaking in English during rounds with lack of interpretation into the caregivers' preferred language, and being sent home without instructions for rehabilitation, ongoing care, or guidance for follow-up. Caregiver perspectives highlighted strengths and challenges throughout the hospital experience that could lead to interventions to improve the care of pediatric injury patients in Northern Tanzania. These interventions include prioritizing communication with caregivers about patient status and care plan, ensuring all direct communication is in the caregivers' preferred language, and standardizing instructions regarding discharge and follow-up.

Deathbed experiences and meaning-making: Perspectives of family caregivers of patients who received cancer palliative care.

The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient's death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver's meaning-making that occurred after the patient's death. In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver's perspective before and after the death of the patient. Thematic content analysis method was conducted. A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers' recollected experiences around the patient deathbed: Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort, and Impact on family ties. Four themes emerged surrounding post-loss meaning-making: An end to the pain and suffering, "Have I done enough?," Significance in the timing of events, and Gaining strength and personal growth. The deathbed is a salient time for family caregivers as they prepare for patient's death. There are opportunities to provide support to the family based on the study findings.

Toward standardizing family caregiving competencies based on the stage of dementia

AbstractBackground &amp; PurposeDespite of the introduction of the formal care system such as long term care insurance system, informal family caregiving still takes an important part in caring for people with dementia. In an environment where family caregiving is not performed properly, the quality of life of both the dementia patient and the family caregiver deteriorates, leading to early admission to a facility and an increase in social costs. This study aimed to identify the importance of family caregiving competencies in different dementia stages from the perspective of the family caregiver.MethodsThis study recruited 210 family caregivers of people with dementia. Data collection was conducted by using a self‐report questionnaire. The participant scored the extent of the importance of dementia caregiving competency according to stages of dementia: early, middle, and advanced stage. The data were illustrated as frequency, percentage, mean, and standard deviation.ResultsThe importance of family caregiving competency was statistically different according to age, gender, education level, and relationship between people with dementia and family caregivers. The family caregivers refer to the following items as critical competencies: using cognitive programs for people with dementia in the early stage; creating a safe living environment in the middle stage; and managing the physical symptoms such as bedsores, incontinence, and diseases of the people with dementia, and properly utilizing necessary long‐term care services in the advanced stage.ConclusionThis study indicated the differences of the importance of family caregiving competencies between each stage of dementia from the perspective of family caregivers. The results of this study are valuable data to standardize effective programs for family caregivers during the different stage of dementia.

Factors associated with self-perceived burden among terminally ill cancer patients.

Key points There is a lack of data on the self‐perceived burden (SPB) of terminal cancer patients at their very end of life. In this multicenter Korean study, terminal cancer patients perceived their burdensomeness from their family caregiver perspective. To relieve patients' SPB, physicians should pay attention to dyads with the features identified in this study.

An Explanation of the Concept of the Care Burden of Family Caregivers of Children with Autism Spectrum Disorder from the Perspective of Family Caregivers

Background: Autism spectrum disorder (ASD), characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication, has greatly affected family caregivers, leading to subjective and objective care burdens on them. Objectives: The aim of this study was to explain the care burden of family caregivers of children with ASD from the perspective of family caregivers. Methods: In this qualitative study, 14 family caregivers were purposefully selected. The data were collected using semi-structured, in-depth interviews. The coding of the data was performed using MAXQDA 10 software, and then the data were analyzed by the content analysis method. Results: After the data coding, 266 codes were obtained, which were then classified into three main categories, including context and background, health factors (physical and mental health), and social support (formal and informal support). Conclusions: The results of the study showed that family caregivers bear the caregiving and mental burden of taking care of their autistic children. Besides adding to our body of knowledge and understanding of the problems encountered by caregivers, this study showed that the caregiving burden can be reduced by providing social support for the caregivers of autistic children.

Perspectives of Family Caregivers of People With Alzheimer's Disease on Caregiving Experience and Needs: A Qualitative Study.

The current study aimed to investigate the perspectives of family caregivers of people with Alzheimer's disease on caregiving experience and needs. A qualitative descriptive method was used with a sample of 23 family caregivers. Data were collected through in-depth, face-to-face interviews using a pilot-tested semi-structured interview guide. Data analysis was performed via content analysis. Three major themes emerged: (1) Stuck in Caregiving, (2) A Life in Metamorphosis, and (3) Needs. Findings revealed that caregivers struggled to manage the care process, adapt to life changes, and fulfill their needs. This study provides rich data to help create interventions to assist family caregivers. [Journal of Psychosocial Nursing and Mental Health Services, xx(xx), xx-xx.].

Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals

BackgroundAdvance care planning (ACP) is a process that enables individuals to define goals and preferences for their future care. It is particularly relevant for people with dementia and their family. Interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the ACP process. However, considering the specific needs of people with dementia, it is important to develop adapted tools for this population. This study was conducted to define the content of an interactive website for people with dementia and their family caregivers to support them in ACP and to assess the barriers and facilitators for potential users in finding and using such a website from the perspective of family caregivers and healthcare professionals.MethodsOnline focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, using a semi-structured topic guide. To analyse the data, we used thematic framework analysis with a combination of deductive and inductive approaches to coding.ResultsWe conducted 4 focus groups with family caregivers of people with dementia (n = 18) and 3 with healthcare professionals (n = 17). Regarding the content of the website, participants highlighted that information on ACP (what and why) and guidance on how to start talking about ACP throughout the dementia trajectory should be included on the website. To increase the usability of the website, most participants considered a text-to-speech and a print option as important functionalities. A lack of computer literacy was found to be the most significant barrier to finding and using the website.ConclusionA website for people with dementia and their family caregivers to support them in ACP should focus on comprehensive content on ACP, peer testimonials, and interactive communication tools. Moreover, there should be certain flexibility in navigating through the website so people with dementia and their family caregivers can use it at their own pace. As the next step, we will include people with dementia in developing the website.

Spiritual care from the perspective of family caregivers and nurses in palliative care: a qualitative study

BackgroundThe palliative care period not only affects patients but also family caregivers in many ways. Palliative care units are places where the spiritual needs of family caregivers become important. According to a holistic care approach, palliative care nurses should determine the spiritual needs of family caregivers and help meet these needs.ObjectiveThis study aims at exploring nurses’ and family caregivers’ experiences of spiritual care.MethodsA phenomenological study was designed in this qualitative research. A total of 10 nurses working in palliative care and 11 family caregivers participated in the study. Nurses’ experiences of delivering spiritual care and family caregivers’ experiences of receiving spiritual care were examined through the in-depth interviewing method on a one-to‐one basis. The data were examined using thematic analysis.ResultsFour main themes were obtained by the data analysis: (I) Impacts of being in a palliative care unit; (II) Coping methods; (III) Importance of spirituality and spiritual care; (IV) Spiritual care. The results were presented according to the COREQ criteria.ConclusionAlthough spiritual care is very necessary for family caregivers, it is not offered sufficiently due to nurse-and institution-related reasons. Palliative care nurses should determine the spiritual needs of family caregivers in line with the holistic care approach. Nurse managers should determine factors preventing nurses from offering spiritual care and create solutions for these factors. The lack of nurses’ knowledge about spiritual care should be resolved by providing continuous training and therefore, nurses’ competencies in spiritual care should be improved.

Implementation of US Post-Acute Care Payment Reform and COVID-19 Policies: Examining Experiences of Health System Leaders, Staff, Patients, and Family Caregivers-A Protocol.

In fiscal year 2020, new national Medicare payment models were implemented in the two most common post-acute care settings (i.e., skilled nursing facilities (SNFs) and home health agencies (HHAs)), which were followed by the emergence of COVID-19. Given concerns about the unintended consequence of these events, this study protocol will examine how organizations responded to these policies and whether there were changes in SNF and HHA access, care delivery, and outcomes from the perspectives of leadership, staff, patients, and families. We will conduct a two-phase multiple case study guided by the Institute of Medicine's Model of Healthcare Systems. Phase I will include three cases for each setting and a maximum of fifty administrators per case. Phase II will include a subset of Phase I organizations, which are grouped into three setting-specific cases. Each Phase II case will include a maximum of four organizations. Semi-structured interviews will explore the perspectives of frontline staff, patients, and family caregivers (Phase II). Thematic analysis will be used to examine the impact of payment policy and COVID-19 on organizational operations, care delivery, and patient outcomes. The results of this study intend to develop evidence addressing concerns about the unintended consequences of the PAC payment policy during the COVID-19 pandemic.