Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers

2016 ◽  
Vol 54 (4) ◽  
pp. 233-244 ◽  
Author(s):  
Carli Friedman ◽  
Mary C. Rizzolo
Keyword(s):  
Family Caregivers ◽  
Care Service ◽  
The United States ◽  
Fiscal Year ◽  
Care Providers ◽  
Personal Care ◽  
Informal Labor ◽  
Care Services ◽  
Paid Labor ◽  
Services And Supports

Abstract The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014.

scholarly journals Policy Frameworks and Parental Choice: Using Conjoint Analysis to Understand Parental Decision Making for Child Care

2021 ◽  
pp. 0192513X2110223
Author(s):  
Adrienne M. Davidson ◽  
Samantha Burns ◽  
Delaine Hampton ◽  
Linda White ◽  
Michal Perlman
Keyword(s):  
Child Care ◽  
Latent Profile Analysis ◽  
Profile Analysis ◽  
The United States ◽  
Poor Quality ◽  
Child Care Providers ◽  
Care Providers ◽  
Care Services ◽  
Parental Decision Making ◽  
Child Care Services

Many children in Canada and the United States experience poor-quality child care on a regular basis. Under the rubric of “parent choice,” governments continue to permit a variety of licensed care providers (centers and homes) as well as unlicensed home child care providers. Research suggests, however, that parents are not well-informed consumers about child care services, unaware of even the basic characteristics of their child’s care. In this study, we provide findings from a latent profile analysis based on a conjoint survey conducted in Toronto, Canada to better understand the factors that influence parents’ decisions in selecting child care services. Based on responses from over 700 parents, we identify five classes of parents that reflect a range of preferences in selecting child care. However, most groups show a strong preference for licensed early childhood education and care (ECEC) options. Limitations of this study and implications for policy are discussed.

scholarly journals Transforming Gerontological Research by Meaningfully Engaging Persons Living With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 728-728
Author(s):  
Michael Lepore ◽  
Richard Fortinsky
Keyword(s):  
Research Participation ◽  
The United States ◽  
International Studies ◽  
Care Services ◽  
Care Partners ◽  
Gerontological Research ◽  
Scientific Meetings ◽  
Conducting Research ◽  
Services And Supports ◽  
Study Designs

Abstract Whereas persons living with dementia have commonly been subjects of gerontological research, participation of persons with dementia in designing and conducting studies and in scientific research meetings has been rare in the United States. In recent years, person-centered research models have arisen which give persons with dementia and their caregivers core roles in the research enterprise. As “co-researchers” with academic/professional researchers, persons with dementia and their caregivers are engaged in all aspects of the research enterprise, jointly developing research questions and study designs, collecting and analyzing data, planning research meetings, and disseminating results. International studies have shown that conducting research in collaboration with the population that is being studied has potential to enhance the quality and appropriateness of research and has been identified as an essential component of studies examining the effectiveness of different approaches to care. This session spotlights innovative advances in gerontological research that meaningfully engages persons with dementia. First, the engagement of persons with dementia in scientific meetings is addressed drawing on the examples of the 2017 and 2020 National Research Summits on Care Services and Supports for Persons with Dementia and their Caregivers (i.e., Summits). Next, a study using a patient engagement framework for caregivers and individuals with mild cognitive impairment living at home is discussed. Finally, the Empowering Partnerships program, which prepares researchers, persons with dementia, and care partners to collaborate in conducting research is reviewed. Outcomes and challenges of these innovations are examined, and the need for academic/professional researcher roles to evolve is discussed.

Understanding the needs of family caregivers of older adults dying with dementia

2013 ◽  
Vol 12 (3) ◽  
pp. 223-231 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Kerstin Roger
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Terminal Illness ◽  
English Language ◽  
Psychological Needs ◽  
Support Needs ◽  
Care Services ◽  
Unique Nature ◽  
Palliative Care Services ◽  
Services And Supports

AbstractObjectives:A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.Methods:A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.Results:Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.Significance of results:Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

scholarly journals Assessment of Clinical and Psychological Needs of Patients With Metastatic Breast Cancer: Challenges and Gaps in Meeting Their Needs in Uganda

2018 ◽  
Vol 4 (Supplement 3) ◽  
pp. 11s-11s
Author(s):  
Henry Ddungu ◽  
Edward Kumaketch ◽  
Eva Namisango
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Metastatic Breast Cancer ◽  
Supportive Care ◽  
Family Caregivers ◽  
Metastatic Breast ◽  
Psychological Needs ◽  
Cost Of Care ◽  
Care Providers ◽  
Care Services

Purpose Uganda has one of the highest age-standardized incidence rates for breast cancer (38.3/100,000) occurring among women age 35 to 45 years. The disease is associated with increased biomedical and psychological demands on affected women and their families. Clinical and supportive care services are offered to patients with metastatic breast cancer (MBC) to meet their needs and improve survival and quality of life. However, the existence of challenges and barriers to health care access affect the satisfaction of the needs of patients with MBC and imply that available services cannot meet every clinical and psychological need these patients. No previous assessment has been done in Uganda of the clinical and psychological needs of patients with MBC. The aim of the current study was to generate data that can be used to increase awareness of the unmet clinical and psychological needs of patients with MBC and their families to inform advocacy strategies for supportive care services in Uganda. Methods We conducted interviews, in-depth interviews, focus group discussions, and document review. Results Patients with MBC (n = 67), survivors (n = 185), clinical providers (n = 24), family (n = 134), and VHT (n = 12) participated in this work. The patient’s most important needs include physical and daily living needs (relieving pain, 85.69%; nutrition and diet, 83.69%; wound management, 80.69%; help when tired, 74.6%; help with house cores, 73.19%); health system, information, and patient support (treatment with dignity, 86.6%; pleasant environment, 83.6%; sensitivity to feelings, 80.6%; counseling, 79.1%; choice of cancer specialists, 77.6%; treatment plan, 76.1%; respect for a patient’s opinion, 74.6%); and psychological (close family concerns, 79.1%; advice on faith, 79.6%; comforting when sad, 74.6%; positive outlook, 73.3%; how to disclose, 71.6%). Long waiting times, out-of-stock medicines, inadequate hospital amenities, family exclusion during patient review conversations, caregiver burnout, cost of care, limited funding, and spiritual, legal, and human resource shortages were needs and challenges identified by survivors, family caregivers, clinical providers, and policymakers. Polices on supportive care for patients with MBC are also unclear. Conclusion There exists a mismatch between patients with MBC, survivors, and health care providers with regard to knowledge of some of the needs of patients with MBC, particularly clinical-related information needs. Dialogue between patients with MBC, survivors, family caregivers, clinical providers, and VHTs is recommended to harmonize knowledge and perceptions of the needs of patients with MBC. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc . No COIs from the authors.

Delivering End-of-Life Cancer Care: Perspectives of Providers

2017 ◽  
Vol 35 (3) ◽  
pp. 497-504 ◽  
Author(s):  
Manali I. Patel ◽  
Vyjeyanthi S. Periyakoil ◽  
David Moore ◽  
Andrea Nevedal ◽  
Tumaini R. Coker
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
Cancer Care ◽  
Care Delivery ◽  
Comparative Method ◽  
The United States ◽  
Home Delivery ◽  
Care Providers ◽  
Face To Face ◽  
Care Services

Objectives: Persistent gaps in end-of-life cancer care delivery and growing associated expenditures remain imminent US public health issues. The objective of this study was to understand clinical providers’ experiences delivering cancer care for patients at the end of life and their perspectives on potential solutions to improve quality of care. Methods: Semistructured interviews were conducted with 75 cancer care providers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis. Results: Providers identified 3 major cancer care delivery challenges including lack of time to educate patients and caregivers due to clinical volume and administrative burdens, ambiguity in determining both prognosis and timing of palliative care at the end-of-life, and lack of adequate systems to support non-face-to-face communication with patients. To address these challenges, providers endorsed several options for clinical practice redesign in their settings. These include use of a lay health worker to assist in addressing early advance care planning, proactive non-face-to-face communication with patients specifically regarding symptom management, and community and in-home delivery of cancer care services. Discussion: Specific strategies for cancer care redesign endorsed by health-care providers may be used to create interventions that can more efficiently and effectively address gaps in end-of-life cancer care.

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

Blood ◽  
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.

Problem and Pathological Gambling: A Consumer Perspective

CNS Spectrums ◽  
1998 ◽  
Vol 3 (6) ◽  
pp. 48-57 ◽  
Author(s):  
Laura M. Letson
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Health Care Services ◽  
Public Awareness ◽  
The United States ◽  
Care Providers ◽  
Compulsive Gambling ◽  
Care Services ◽  
Consumer Perspective ◽  
The Impact

AbstractThe growth of gambling across the United States over the past decade has created significant difficulties for pathological gamblers. The rise in problem gambling, coupled with an increasing strain on social and health care services for treatment of gamblers and their families, has resulted in an urgent need for innovative interventions that target patients, health care providers, educational institutions, government, media, and the gambling industry. This article describes the impact of gambling from a consumer-protection perspective, and offers approaches to promoting public awareness of compulsive gambling as a pervasive problem that affects multiple areas of society.

scholarly journals 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)

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.

scholarly journals Comfort Among Older Lesbian and Gay People in Disclosing Their Sexual Orientation to Health and Aged Care Services

2020 ◽  
pp. 073346482092533 ◽  
Author(s):  
Anthony Lyons ◽  
Beatrice Alba ◽  
Andrea Waling ◽  
Victor Minichiello ◽  
Mark Hughes ◽  
...  
Keyword(s):  
Sexual Orientation ◽  
Service Providers ◽  
Care Service ◽  
Internalized Homophobia ◽  
Well Being ◽  
Aged Care ◽  
Care Providers ◽  
Community Connectedness ◽  
Lesbian And Gay ◽  
Care Services

Being comfortable in disclosing one’s sexual orientation to health and aged care providers is important for older lesbian and gay adults, given that nondisclosure is associated with poorer health and well-being outcomes. In a sample of 752 lesbian and gay adults aged 60 years and older living in Australia, we found only 51% of lesbian women and 64% of gay men felt fully comfortable to disclose their sexual orientation to health and aged care service providers. For both the women and the men, those who felt fully comfortable to disclose reported significantly less internalized homophobia; had fewer experiences of discrimination in the past year; and reported greater lesbian, gay, bisexual, transgender, and intersex (LGBTI) community connectedness. Feeling fully comfortable was also predicted by fewer experiences of lifetime discrimination among the men. These findings may help those seeking to assist older lesbian and gay people in feeling comfortable and being open with health and aged care service providers.

scholarly journals USING ACCESSIBLE TECHNOLOGY TO SUPPORT CAREGIVERS OF PERSONS WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S243-S243
Author(s):  
Katie Maslow ◽  
Scott A Trudeau ◽  
Sara J Czaja
Keyword(s):  
Family Caregivers ◽  
Occupational Therapists ◽  
Community Living ◽  
Positive Outcomes ◽  
Health Care Insurance ◽  
Home Safety ◽  
Home Video ◽  
Care Services ◽  
Home Based ◽  
Services And Supports

Abstract There is widespread enthusiasm about the potential of technology in general to support persons living with dementia and their families and other caregivers. At the same time, recommendations from the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers emphasize the need for research to develop, evaluate, and disseminate specific technologies that can achieve meaningful benefits for well-defined subgroups of persons living with dementia and their caregivers, including individuals from diverse populations and individuals who live and receive care in various settings. This symposium focuses on specific home-based technologies to help family caregivers of community-living persons with dementia. Our three speakers will talk about research results for three different technology-related interventions, including: use of home video telehealth visits to help family caregivers provide effective dementia care and provide medical management; use of home video assessments by occupational therapists to help family caregivers increase home safety for community-living persons with dementia; and approaches for making a self-paced Home Safety Toolkit available to family caregivers of community-living veterans with dementia. Each speaker will report both positive outcomes, including family caregiver satisfaction, and barriers encountered in delivering the interventions. Such barriers include difficulties with the technologies as well as caregiver reluctance to change and costs that were not covered by health care insurance or health systems. Our discussant will respond to the presentations and solicit audience questions and discussion.

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