Family Caregiver Strategies to Manage Medication Refusals in Persons Living with Dementia: A Survey

Dr. Bratches’ joint-funded ICAR/CPSC award will be used to fund a mixed-method explanatory sequential study to understand family caregiver strategies to manage medication refusals for persons living with dementia. Medication refusals are a distressing aspect of care-resistant behavior that contributes to negative outcomes for persons living with dementia and their caregivers, but little is known about the strategies used by family caregivers to effectively manage medication refusals, especially by caregivers of historically marginalized groups. This study will seek to classify caregiver strategies to manage medication refusals and identify strategic components for future targeted intervention.

Characterizing the Patterns and Role of Expectations in Decisions about Complex Abdominal Surgery for Cancer

As a palliative-trained surgical oncologist, Dr. Kopecky performs high-risk abdominal surgery for cancer. For her study, she plans to characterize the cognitive aspects of patient and caregiver expectation development in order to better understand the ways in which expectations influence decision-making. This work will also investigate ways in which surgeons currently elicit, address, and manage the expectations of patients and caregivers before and after high-risk abdominal surgery for cancer. She hopes that the findings from this study will enable her toward designing an intervention aimed at optimizing expectation management in the peri-operative setting.

Exploring the Cultural Values and Care Preferences of Adults with Sickle Cell Disease

Dr. Wall’s study objective is to investigate, for the first time, specialty palliative care referral timing, reasons and barriers in women with cervical cancer. Trends in referral patterns will be analyzed over a 5 year period and they will conduct semi-structured interviews with patients with newly diagnosed cervical cancer. To assess patient needs tailored to specialty palliative care and to identify critical intervention components with concurrent administration of a validated quality of life measure. They will look to determine the specialized palliative care needs of racial minority groups increasingly burdened with cervical cancer in the Southeast United States and to develop guidelines for a consistently implemented early specialty palliative care program.

A Pilot Feasibility and Efficacy Study of Transdermal Auricular Vagus Nerve Stimulations for Treating Insomnia in Breast Cancer Patients Receiving Palliative Care

Dr. Evancho’s study addresses the issue of fatigue, anxiety, and depression as a common conditions in breast cancer and how it parallels with insomnia and sleep disturbance, exacerbating one another and decreasing quality of life (QOL). In a study of patients with cancer experiencing insomnia, 87% cited the stress surrounding their cancer diagnosis as a major reason for sleep difficulties. Benzodiazepines (BZDs) are the most commonly prescribed pharmacotherapy intervention for insomnia, however BZDs are associated with negative side effects including risks of misuse and addiction.

Life-Space mobility in older adult colorectal survivors: A mixed method cohort study

Dr. Taylor's study will aim to examine the relationship between biopsychosocial factors and life-space mobility (LSM), LSM trajectory patterns, older colorectal cancer (CRC) survivors’ lived LSM experiences, and survivors’ LSM intervention design suggestions.

Upfront Utilization of Specialty Palliative and Supportive Care in Patients with Newly Diagnosed Advanced Cervical Cancer

Dr. Wall’s study objective is to investigate, for the first time, specialty palliative care referral timing, reasons and barriers in women with cervical cancer. Trends in referral patterns will be analyzed over a 5 year period and they will conduct semi-structured interviews with patients with newly diagnosed cervical cancer. To assess patient needs tailored to specialty palliative care and to identify critical intervention components with concurrent administration of a validated quality of life measure. They will look to determine the specialized palliative care needs of racial minority groups increasingly burdened with cervical cancer in the Southeast United States and to develop guidelines for a consistently implemented early specialty palliative care program.

The Mental Health Experiences of Sexual and Gender Minorities Living with Cancer and their Intimate Partners

A priority focus of palliative and end-of-life (EOL) care in cancer is to improve the well-being and mental health of patients and their families. This is especially true for patient populations with a disproportionate cancer burden, such as sexual and gender minorities (SGMs). Further, SGMs experience increased cancer risk, less effective care, and poor outcomes than heterosexual, cisgendered, and gender binary individuals. Thus, it is imperative to understand better the palliative and EOL care needs of SGM cancer survivors and their intimate partners.

The aim of this study is to determine relationships between stressors, stress moderators, and daily depression-related symptoms and to determine relationships between depression symptom trajectories, resilience, frailty, and QoL.

The results of this study will identify modifiable targets to inform interventions that improve resilience and QoL among SGM cancer survivors and their intimate partners. The proposed work will serve as the first step towards a dynamic SGM mental health framework in cancer to improve the quality of palliative and EOL care for this underserved population.

Thematic area of research: Addressing Culture, Lived Experiences and Racism; Towards Health Equity

Culturally Based Values and Preferences for Clinical Care and Communication with Gay and Bisexual Men with Serious Illness and their Partners in the South

As a group, LGBT older adults are affected disproportionately by poverty and poor health due to a lifetime of stressors and discrimination, particularly for LGBTs persons of color. Lack of trust and legal protections may cause older LGBT adults to be less open about their sexuality, further hampering a focus on their unique health care needs.

The specific aim of this study is to gain an understanding of the cultural values and preferences for care and communication among African American and White GB men, aged 50 years or older, with a serious illness and/or their partners/caregivers.

Thematic area of research: Addressing Culture, Lived Experiences and Racism; Towards Health Equity

Assessing Provider, Patient, and Caregiver Preferences for Palliative and End-of-Life Care in Kidney Transplantation

The purpose of this research is to fill a knowledge gap regarding whether the kidney transplant center is an appropriate space for conversations about palliative care and ACP for patients with advanced kidney disease.

Thematic area of research: Increasing Access to Palliative and Supportive Care

Culturally Based Values and Preferences for Clinician Care and Communication Transgender and Gender Diverse People with Serious Illness and their Partners

Using the gender minority stress and resilience theory as a conceptual framework and Community-Based Participatory Research as our approach, we aim to inform the development of a PC Conversation guide for TGD people aged 55+ with serious illness and their partners. We aim to identify 1) the cultural values and preferences for clinician communication and PC care, 2) the minority stress experiences faced in healthcare settings, and 3) racial differences in these values, preferences, and experiences.

Thematic area of research: Address Palliative Care Cultural Considerations and Disparities

Culturally Based Values and Preferences for Clinician Care and Communication of Lesbian and Bisexual Women with Serious Illness and their Partners

To understand the values and preferences, goals of medical care, and other preferences including clinician communication, of a sub-culture of lesbian and bisexual women with serious illness and their partners who live in an urban southern city.

Thematic area of research: Address Palliative Care Cultural Considerations and Disparities

Elucidating strategies to elicit oncologists’ recommendation to promote healthy eating behaviors among cancer survivors

In this study, we begin to explore how and if oncologists’ recommendation leads to healthy behavior improvement by examining if it affects engagement in a web-based diet program, diet self-efficacy and diet quality. The study design will be guided by formative research findings and Bandura’s Social-Cognitive Theory (SCT) behavior change model that proposes that effective health promotion interventions are based on SCT constructs.

Thematic area of research: Enhance Communication Skills Among Patients, Caregivers, and Clinicians

ENABLE DOSE (Does One Size Fit Everyone?): Exploring Caregivers’ Experiences in an Early Palliative Care Intervention for Advanced Heart Failure

The goal of this proposal is to gather qualitative data to identify key dose and content components for a highly innovative optimization trial pilot of the ENABLE CHF-PC intervention.

Thematic area of research: Increasing Access to Palliative and Supportive Care

End‐of‐Life Care for Children with Advanced Heart Disease in Alabama: Patterns and Parent Priorities

The purpose of this study is to better understand end-of-life (EOL) care for children with AHD by determining disparities in EOL care and if those patterns and disparities reflect bereaved patient priorities.

Thematic area of research: Improve Caregivers Support & Bereavement Care

Evaluation of communication and patient preferences for decision-making in metastatic breast cancer

The goal of the proposed research is to explore the communication about patient preferences by both patients and their oncologists related to decision-making in metastatic breast cancer, an incurable illness with limited life expectancy.

Thematic area of research: Enhance Communication Skills Among Patients, Caregivers, and Clinicians

Telehealth to Support Palliative Care to Improve Value, Outcomes and Transitions in the Skilled Nursing Facility

The overall goal of this pilot study is to determine the feasibility of administering a tele-based palliative care consult to “short-stay” (<90 days)patients in a SNF; including assessing its acceptability to the SNF facility, clinicians, and patients, and to assess short-term effectiveness of care on patient outcome.

Thematic area of research: Increasing Access to Palliative and Supportive Care

Harvest for Hope: Developing a Community Gardening Intervention to Enhance Supportive Care Among Metastatic Cancer Survivors

Dr. Bail’s project addresses an understudied, and much needed, area of nutrition and cancer research. The goal of this project is to gather data, through interviews, to inform the development of a community gardening intervention adapted for those living with metastatic cancer (i.e., Harvest for Hope).

Clinical and Consumer Perspectives Regarding Advance Care Planning (ACP) Best -Practice Conversations at Four Different Stages of Dementia

Dr. Jablonski-Jaudon's group will undertake a qualitative study to describe the desired content, pacing, and direction of ACP conversations from the perspectives of consumers (persons with potential or actual cognitive impairment and caregivers) and clinicians who treat persons with dementia.

ENABLE: COPD-PC - Developing a Palliative Care Intervention for Patients with Chronic Obstructive Pulmonary Disease and Their Caregivers

Dr. Iyer's team will adapt the evidence-based ENABLE palliative care telephone intervention for patients with COPD and their caregivers.

Intervention Strategies to Improve Cognitive Functioning in Hematologic Cancer Survivors After hematopoietic Cell Transplantation

Dr. Sharafeldin's group will pilot a cognitive training intervention that will focus on improving neurocognitive functions in 20 HCT survivors (with cognitive impairment) through "brain exercises and games."

Simulated-Altitude as an Adjunct to Optimize Aerobic Exercise in Obese Breast Cancer Survivors with Limited Ambulatory Function: Pilot Randomized Trial

Dr. Carter’s group will be the first to investigate the potential value of walking while simulating higher altitude as an exercise strategy to improve cardiovascular and metabolic health in obese Breast Cancer Survivors with ambulatory limitations.

Examining the Role of Spiritual Coping in Health and Well-Being of Patients with Cystic Fibrosis (CF)

Dr. Mrug’s team recognizes that there is no research examining spiritual coping in adult patients with CF which would inform intervention development. So their project will focus on understanding how spiritual coping relates to well-being, treatment adherence, health, and quality of life in adult patients with CF.

Determining the Association between Unmet Palliative Care Needs and Healthcare Utilization among Older Adults with Heart Failure (HF)

Dr. Lo’s team will examine to what extent the association between unmet Palliative Care needs among older patients with HF and healthcare utilization are due to socio-demographic factors or system driven issues; and, which of these are improved with an early Palliative Care intervention.

Improving dietary patterns in head and neck cancer survivors to optimize disease outcomes and supportive care: a pilot/feasibility intervention study

Dr. Arthur’s research will assess the feasibility of a post-treatment dietary intervention for Head and Neck cancer survivors.

Describing and evaluating current practices of specialist and generalist palliative care support for patients with a Mechanical Circulatory Support Device (MCSD)

Dr. Bakitas and Dr. Pamboukian will undertake the first population-based survey of a North American registry for patients who are receiving durable MCSD therapy to determine current specialist and generalist palliative care practices in order to identify areas for improved palliative care specialist use.

Examining Self-Care Practices of Family Caregivers of Persons with Advanced Cancer and their Association with Caregiver Characteristics and their Ability to Perform in the Caregiving Role

Dr. Dionne-Odom’s research will focus on family caregivers of persons with advanced cancer to identify sociodemographic and health characteristics associated with their self-care practices and to describe the association of family caregivers’ self-care practices with their ability to provide care.

Development of a Behavioral Intervention for Chronic Pain in Individuals with HIV

Dr. Merlin’s research will use intervention mapping to systematically develop a tailored behavioral intervention for chronic pain in HIV-infected patients.