End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis.

Background: Dementia with Lewy bodies (DLB) is one of the most common degenerative dementias, but research on end-of-life experiences for people with DLB and their caregivers is limited.

Method: Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries and followed prospectively every 6 months. The current study examines results of caregiver study visits 3 months after the death of the person with DLB.

Triadic Communication in Medical Encounters Including Individuals With Dementia: A Scoping Review.

Purpose: The overall goal of this review was to identify what is known about triadic (clinician-patient-caregiver) communication in mild cognitive impairment (MCI) and dementia care settings throughout the care continuum.

Methods: Using a structured search, we conducted a systematic scoping review of relevant published journal articles across 5 databases. Study titles/abstracts and selected full-text articles were screened by 2 investigators in Covidence systematic review software.

Persons living with dementia and caregivers' communication preferences for receiving a dementia diagnosis.

Objective: As the number of individuals diagnosed with dementia increases, so does the need to understand the preferences of persons living with dementia (PLWD) and caregivers for how clinicians can deliver a dementia diagnosis effectively, which can be a difficult process. This study describes the diagnostic communication preferences of PLWD and caregivers.

Methods: We conducted semi-structured individual phone interviews with two groups: PLWD who were diagnosed in the past two years ( = 11) and family caregivers of PLWD ( = 19) living in Florida.

Identifying locally actionable strategies to increase participant acceptability and feasibility to participate in Phase I cancer clinical trials.

Background: Recruitment of cancer clinical trial (CCT) participants, especially participants representing the diversity of the US population, is necessary to create successful medications and a continual challenge. These challenges are amplified in Phase I cancer trials that focus on evaluating the safety of new treatments and are the gateway to treatment development. In preparation for recruitment to a Phase I recurrent head and neck cancer (HNC) trial, we assessed perceived barriers to participation or referral and suggestions for recruitment among people with HNC and community physicians (oncologist, otolaryngologist or surgeon).

A systematic scoping review of patient and caregiver self-report measures of satisfaction with clinicians' communication.

Objective: We conducted a systematic scoping review of self-report tools used to measure patient and/or caregiver satisfaction with clinician communication. Aims included identifying: 1) instruments that have been used to measure communication satisfaction, and 2) content of the communication items on measures.

Methods: Two databases (PubMed and CINAHL) were searched for relevant studies.

Understanding parents uncertainty sources and management strategies while caring for a child diagnosed with a hematologic cancer.

Rationale: Parents of a child or adolescent (CA) or young adult (YA) diagnosed with a hematologic cancer often face uncertainty. Managing uncertainty is critical to reduce the psychosocial burden of illness-related stressors.

Objective: This study sought to identify: 1) sources of uncertainty among parents of a child diagnosed with a hematologic cancer, 2) strategies used by parents to manage uncertainty, and 3) clinicians' responses to parents' online information-seeking approach to managing uncertainty.

Living with a blood cancer in later life: The complex challenges and related support needs of adults aged 75 and older.

Objectives: This study investigated the challenges and support needs of adults aged 75 and older during and after treatment for a blood cancer to aid targeted supportive resource development.

Methods: Adults aged 75 and older with a blood cancer participated in in-depth, semi-structured interviews about challenges and unmet support needs. Participants recruited through The Leukemia & Lymphoma Society were (1) in treatment or previously in treatment for a blood cancer at age 75 or older and (2) living in the United States or its territories.

Are evaluations in simulated medical encounters reliable among rater types? A comparison between standardized patient and outside observer ratings of OSCEs.

Objective: By analyzing Objective Structured Clinical Examination (OSCE) evaluations of first-year interns' communication with standardized patients (SP), our study aimed to examine the differences between ratings of SPs and a set of outside observers with training in healthcare communication.

Methods: Immediately following completion of OSCEs, SPs evaluated interns' communication skills using 30 items. Later, two observers independently coded video recordings using the same items.

Mapping Uncharted Terrain: A Systematic Review of Complementary and Integrative Health Communication Using Observational Data in Biomedical Settings.

Complementary and integrative health (CIH) use is diverse and highly prevalent worldwide. Prior research of CIH communication in biomedical encounters address safety, efficacy, symptom management, and overall wellness. Observational methods are rarely used to study CIH communication and avoid recall bias, preserve ecological validity, and contextualize situated clinical communication.

Differences in stakeholder-reported barriers and implementation strategies between counties with high, middle, and low HPV vaccine initiation rates: a mixed methods study.

Background: A greater understanding of the county-level differences in human papillomavirus (HPV) vaccination rates could aid targeting of interventions to reduce HPV-related cancer disparities.

Methods: We conducted a mixed-methods study to compare the stakeholder-reported barriers and efforts to increase HPV vaccination rates between counties within the highest, middle, and lowest HPV vaccine initiation (receipt of the first dose) rates among 22 northern Florida counties. Between August 2018 and April 2019, we recruited stakeholders (n = 68) through purposeful and snowball sampling to identify potential participants who were most knowledgeable about the HPV vaccination activities within their county and would represent a variety of viewpoints to create a diverse picture of each county, and completed semi-structured interviews.

Improving Clinical and Family Communication for Adult Child Caregivers of a Parent With a Blood Cancer: Single-Arm Pre-Post Pilot Intervention.

Background: Adult child caregivers of parents with cancer may face challenges when communicating with the patient and other family members, communicating during clinical interactions, and navigating web-based information seeking.

Objective: We developed and pilot-tested the Healthy Communication Practice program for adult child caregivers of parents with a blood cancer, which aims to help participants learn and implement communication skills central to caregiving. We assessed the feasibility and acceptability of the training.

Clinician approaches to communicating a dementia diagnosis: An interview study.

Background: Individuals with cognitive impairment and their families place a high value on receiving a dementia diagnosis, but clinician approaches vary. There is a need for research investigating experiences of giving and receiving dementia diagnoses. The current study aimed to investigate clinician approaches to giving dementia diagnoses as part of a larger study investigating patient, caregiver, and clinician experiences during the diagnosis encounter.

Parents Caring for Children Diagnosed with a Blood Cancer from Infancy to Emerging Adulthood: A Life span Perspective.

Pediatric blood cancer diagnosis is a stressful experience for families as it can involve urgent treatment that can be life-threatening and require extended hospital stays. Little is known about the experiences of parent caregivers of children with a blood cancer during the diagnosis period and how families' needs may differ in light of the patient's developmental phase in the life span. We conducted semistructured in-depth interviews with 20 parent caregivers (aged 30-65) of children diagnosed with a blood cancer, recruited through The Leukemia & Lymphoma Society's (LLS) constituency.

A systematic review of communication about Complementary and Integrative Health (CIH) in global biomedical settings.

Objectives: A systematic review to analyze communication rates of complementary and integrative health (CIH) and analyze how communication terms, such as "disclosure," are measured and operationalized.

Methods: We searched seven databases for studies published between 2010 and 2018 with quantitative measurements of patients' communication of CIH to a biomedical clinician. We analyzed communication terms used to describe patients reporting CIH usage.

A lifespan approach to understanding family caregiver experiences of a blood cancer diagnosis.

Objectives: The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers.

Methods: Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data.

"Home wasn't really home anymore": Understanding caregivers' perspectives of the impact of blood cancer caregiving on the family system.

Purpose: Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children.

Pro-Vaxxers Get Out: Anti-Vaccination Advocates Influence Undecided First-Time, Pregnant, and New Mothers on Facebook.

Social media has revolutionized health information-seeking behavior with crowd-based medical advice. Decreased vaccination uptake and subsequent disease outbreaks have generally occurred in localized clusters based on social norms; however, geographically unrestricted Facebook networks promote parental vaccination refusal congruent with digital identity formation. Interactions within the largest closed Facebook group for vaccination choice were analyzed through the lens of Social Influence Theory.