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1.
Alzheimer Dis Assoc Disord ; 38(2): 213-225, 2024.
Article in English | MEDLINE | ID: mdl-38812448

ABSTRACT

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. Articles were excluded if they were not about clinical communication, focused only on caregiver-patient communication or communication in residential care, were interventional, lacked empirical data, or were not in English. Extracted data were documented using Google Forms. RESULTS: The study team screened 3426 article titles and abstracts and 112 full-text articles. Forty-four articles were included in the final review. Results were categorized by 3 communication scenarios: diagnostic communication (n=22), general communication (n=16), and advanced care planning communication (n=6). CONCLUSIONS AND RELEVANCE: Across the included articles, the conceptualization and assessment of communication lacked homogeneity. Future directions include addressing these research gaps, establishing recommendations for clinicians to effectively communicate with individuals with dementia and caregivers, and creating and testing communication skills trainings for caregivers/family members, clinicians, and/or individuals with dementia to facilitate effective communication.


Subject(s)
Caregivers , Communication , Dementia , Humans , Caregivers/psychology , Cognitive Dysfunction , Physician-Patient Relations
2.
Health Expect ; 2023 Dec 02.
Article in English | MEDLINE | ID: mdl-38041447

ABSTRACT

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). METHODS: Between December 2020 and February 2022, we conducted a qualitative needs assessment via semistructured interviews with a race and ethnicity-stratified sample of people with HNC (n = 30: 12 non-Hispanic White, 9 non-Hispanic African American, 8 Hispanic and 1 non-Hispanic Pacific Islander) and community physicians (n = 16) within the University of Florida Health Cancer Center catchment area. Interviews were analyzed using a qualitative content analysis approach to describe perspectives and identify relevant themes. RESULTS: People with HNC reported thematic barriers included: concerns about side effects, safety and efficacy; lack of knowledge and systemic and environmental obstacles. Physicians identified thematic barriers of limited physician knowledge; clinic and physician barriers and structural barriers. People with HNC and physicians recommended themes included: improved patient education, dissemination of trial information and interpersonal communication between community physicians and CCT staff. CONCLUSIONS: The themes identified by people with HNC and community physicians are consistent with research efforts and recommendations on how to increase the participation of people from minoritized populations in CCTs. This community needs assessment provides direction on the selection of strategies to increase CCT participation and referral. PATIENT OR PUBLIC CONTRIBUTION: This study focused on people with HNC and community physicians' lived experience and their interpretations of how they would consider a future Phase I clinical trial. In addition to our qualitative data reflecting community voices, a community member reviewed the draft interview guide before data collection and both people with HNC and physicians aided interpretation of the findings.

3.
Health Commun ; 38(14): 3147-3162, 2023 Dec.
Article in English | MEDLINE | ID: mdl-36602254

ABSTRACT

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. Following PRISMA guidelines, we systematically reviewed studies at the intersection of social scientific observational research and findings about CIH communication between clinicians, patients, and caregivers in biomedical settings. We identified international, peer-reviewed publications from seven databases between January 2010 and December 2020. Titles and abstracts were first screened for inclusion, then full studies were coded using explicit criteria. We used a standard checklist was modified to assess article quality. Ten of 11,793 studies examined CIH communication using observational methods for CIH communication in biomedical settings. Studies used a range of observational techniques, including participant and non-participant observation, which includes digital audio or video recordings. Results generated two broad sets of findings, one focused on methodological insights and another on CIH communication. Despite methodological and topic similarities, included studies addressed CIH communication as a process and as proximal and intermediate health outcomes. We recommend how observational studies of CIH communication can better highlight relationships between communication processes and health outcomes. Current research using observational methods offers an incomplete picture of CIH communication in biomedical settings. Future studies should standardize how observational techniques are reported to enhance consistency and comparability within and across biomedical settings to improve comparability.


Subject(s)
Health Communication , Humans , Palliative Care
4.
Palliat Support Care ; : 1-7, 2023 Aug 22.
Article in English | MEDLINE | ID: mdl-37606295

ABSTRACT

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. A thematic analysis was conducted with findings compared between 2 groups: (1) chronic -living with a chronic blood cancer; (2) acute -living with an acute blood cancer or both an acute and chronic blood cancer. RESULTS: Participants (n = 50) ranged from 75 to 91 years old. Both groups described similar experiences and identified 5 challenges and support needs: (1) socioemotional impact, (2) activities of daily living and instrumental activities of daily living (ADLs/iADLs), (3) uncertainty management, (4) treatment-related stressors, and (5) COVID-19-related strain. Properties for these themes illustrate challenges and support needs, with some differences between groups. For instance, those living with a chronic blood cancer highlighted financial strain with treatment-related stressors, while those with an acute blood cancer focused more on iADLs. SIGNIFICANCE OF RESULTS: Findings inform an agenda for targeted resource development for older adults with a blood cancer nearing the end of the life span. Results demonstrate the need for supportive services and family communication interventions to help patients manage iADLs and navigate socioemotional needs and challenges.

5.
Palliat Support Care ; 20(1): 22-29, 2022 02.
Article in English | MEDLINE | ID: mdl-33890563

ABSTRACT

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. RESULTS: Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members. SIGNIFICANCE OF RESULTS: Differences between the caregivers' experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.


Subject(s)
Caregivers , Neoplasms , Adult , Adult Children , Aged , Caregivers/psychology , Family/psychology , Humans , Longevity , Middle Aged , Uncertainty
6.
Support Care Cancer ; 29(6): 3069-3076, 2021 Jun.
Article in English | MEDLINE | ID: mdl-33051829

ABSTRACT

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. METHODS: We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. RESULTS: Caregivers ranged from age 30 to 64 (M = 43). They described four ways that caregiving impacted themselves and the larger family system: (1) disruption of home life, (2) emotional (dis)connection, (3) juggling competing roles, and (4) developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. CONCLUSIONS: Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.


Subject(s)
Caregivers/psychology , Family/psychology , Hematologic Neoplasms/psychology , Adult , Female , Humans , Male , Middle Aged
7.
Health Commun ; 36(6): 693-702, 2021 05.
Article in English | MEDLINE | ID: mdl-31920115

ABSTRACT

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. Anti-vaccination advocates impacted first-time mothers' expressed vaccination intentions through both informational and normative influence processes. Six overarching themes were identified as strategies used by these individuals to persuade fence sitting parents to delay or decline vaccinations, including: natural solutions, maternal empowerment, distrust of conventional medicine establishment, fear appeals, 'Russian Roulette' risk benefit analysis, and misinformation and misunderstandings.


Subject(s)
Social Media , Female , Humans , Mothers , Parents , Pregnancy , Vaccination , Vaccination Refusal
8.
PEC Innov ; 4: 100253, 2024 Dec.
Article in English | MEDLINE | ID: mdl-38298558

ABSTRACT

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 (n = 11) and family caregivers of PLWD (n = 19) living in Florida. PLWD and caregivers were not recruited/enrolled as dyads. Results: The groups' communication preferences were largely similar. Data were analyzed thematically into five themes: communicate the diagnosis clearly, meet information needs, discuss PLWD/caregiver resources, prepare for continued care, and communicate to establish and maintain relationships. Conclusion: Participants wanted clear communication, information, and support, but differed in some details (e.g. the language used to describe the diagnosis and the amount/type of desired information). Clinicians can apply general principles but will need to tailor them to individual preferences of PLWD and caregivers. Innovation: Limited research has elicited PLWD and caregivers' communication preferences for receiving dementia diagnoses, particularly through an individualized data collection method allowing for richer descriptions and deeper understanding.

9.
J Med Educ Curric Dev ; 11: 23821205241269376, 2024.
Article in English | MEDLINE | ID: mdl-39104855

ABSTRACT

Objectives: Only 5-8% of adults with cancer participate in cancer clinical trials (CCTs), with even lower rates among underrepresented groups. Improving oncologists' communication skills may enhance the frequency and quality of their discussions with patients about CCTs, consequently increasing participation. However, little is known about interest in or presence of CCT-related communication training during Hematology-Oncology (Hem-Onc) fellowships. This study aimed to describe, from the perspective of Hem-Onc fellowship program directors (PDs): (1) the current landscape of CCT education for Hem-Onc fellows; (2) the acceptability and feasibility of implementing a CCT communication skills workshop for Hem-Onc fellows. Methods: We used an explanatory sequential mixed-methods approach. PDs were surveyed and interviewed about their graduate medical education (GME) programs' current CCT curriculum, training challenges, fellows' CCT knowledge and CCT communication skills, and preferences for a CCT communication workshop. Results: PDs were surveyed (n = 40) and interviewed (n = 12). PDs reported that their institutions prioritize CCT accrual (M = 4.58, SD = .78; 1-5 scale, 5 = "Strongly Agree") and clinical research training (M = 4.20, SD = .85). CCT skills that programs least often addressed were how to (1) discuss CCTs with newly diagnosed patients, (2) talk to patients about CCTs when none are available, and (3) help patients find CCTs at other institutions. PDs were interested in a CCT communication workshop for fellows ("yes" = 67.5%, "maybe" = 32.5%) and said training would be feasible (M = 4.28, SD = .78) and useful (M = 4.47, SD = .78). Qualitative results described programs' current approaches to CCT education and insights about developing and implementing CCT communication training. Conclusions: There is a clear need to improve CCT communication skills training in Hem-Onc fellowship programs and to implement and scale such training to increase CCT participation, especially among diverse patient populations. Furthermore, Hem-Onc GME PDs view such training as feasible and useful.

10.
PLoS One ; 19(8): e0309530, 2024.
Article in English | MEDLINE | ID: mdl-39208192

ABSTRACT

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. These visits included the Last Month of Life survey, study-specific questions, and a semi-structured interview querying end-of-life experiences. RESULTS: Individuals with DLB (n = 50) died 3.24 ± 1.81 years after diagnosis, typically of disease-related complications. Only 44% of caregivers reported a helpful conversation with clinicians regarding what to expect at the end of life in DLB. Symptoms commonly worsening prior to death included: cognition and motor function, ADL dependence, behavioral features, daytime sleepiness, communication, appetite, and weight loss. Almost 90% of participants received hospice care, but 20% used hospice for <1 week. Most caregivers reported overall positive experiences in the last month of life, but this was not universal. Having information about DLB and what to expect, access to support, and hospice care were healthcare factors associated with positive and negative end of life experiences. Hospice experiences were driven by communication, care coordination, quality care, and caregiver education. CONCLUSION: Most caregivers of individuals who died with DLB reported positive end-of-life experiences. However, the study identified multiple opportunities for improvement relating to clinician counseling of patients/families, support/hospice referrals, and monitoring individuals with DLB to identify approaching end of life. Future research should quantitatively identify changes that herald end of life in DLB and develop tools that can assist clinicians in evaluating disease stage to better inform counseling and timely hospice referrals. TRIAL REGISTRATION: Trial registration information: NCT04829656.


Subject(s)
Caregivers , Lewy Body Disease , Terminal Care , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Caregivers/psychology , Hospice Care , Lewy Body Disease/mortality , Lewy Body Disease/psychology , Prospective Studies , Terminal Care/psychology , Adult
11.
PEC Innov ; 3: 100198, 2023 Dec 15.
Article in English | MEDLINE | ID: mdl-37662692

ABSTRACT

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. Methods: Parents of CAs/YAs diagnosed with a hematologic cancer within the past 1-18 months and living in the U.S. participated in an in-depth, semi-structured phone interview (n = 20). Data were analyzed thematically. Results: Parents reported uncertainty about treatment (options, efficacy, and side effects or risks) and uncertainty about the future (recurrence, whether worry would subside, and how to approach the child's future). Parents managed uncertainty by seeking information online, talking to clinicians, and joining support groups. Clinicians' responses to online information-seeking were described as supportive and unsupportive. Conclusion: Parents described struggling with uncertainty across the cancer continuum (from primary treatment to survivorship). Parents' psychosocial health may benefit from individual and systems level interventions that help address and manage uncertainty, especially interventions focusing on parent caregiver-clinician communication.

12.
Patient Educ Couns ; 117: 107976, 2023 12.
Article in English | MEDLINE | ID: mdl-37738791

ABSTRACT

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. Eligibility included patient or caregiver self-report tools assessing satisfaction with clinicians' communication in a biomedical healthcare setting; and the stated purpose for using the measurement involved evaluating communication satisfaction and measures included more than one question about this. All data were charted in a form created by the authors. RESULTS: Our search yielded a total of 4531 results screened as title and abstracts; 228 studies were screened in full text and 85 studies were included in the review. We found 53 different tools used to measure communication satisfaction among those 85 studies, including 29 previously used measures (e.g., FS-ICU-24, CAHPS), and 24 original measures developed by authors. Content of communication satisfaction items included satisfaction with content-specific communication, interpersonal communication skills of clinicians, communicating to set the right environment, and global communication satisfaction items. CONCLUSION: There was high variability in the number of items and types of content on measures. Communication satisfaction should be better conceptualized to improve measurement, and more robust measures should be created to capture complex factors of communication satisfaction. PRACTICE IMPLICATIONS: Creating a rigorous evaluation of satisfaction with clinician communication may help strengthen communication research and the assessment of communication interventions.


Subject(s)
Caregivers , Patient Satisfaction , Humans , Self Report , Communication , Personal Satisfaction
13.
PEC Innov ; 2: 100125, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37214504

ABSTRACT

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. We conducted two-tailed t-tests to examine differences between SP and observers' ratings. Results: Rater scores differed significantly on 21 items (p < .05), with 20 of the 21 differences due to higher SP in-person evaluation scores. Items most divergent between SPs and observers included items related to empathic communication and nonverbal communication. Conclusion: Differences between SP and observer ratings should be further investigated to determine if additional rater training is needed or if a revised evaluation measure is needed. Educators may benefit from adjusting evaluation criteria to decrease the number of items raters must complete and may do so by encompassing more global questions regarding various criteria. Furthermore, evaluation measures may be strengthened by undergoing reliability and validity testing. Innovation: This study highlights the strengths and limitations to rater types (observers or SPs), as well as evaluation methods (recorded or in-person).

14.
J Adolesc Young Adult Oncol ; 11(1): 61-67, 2022 02.
Article in English | MEDLINE | ID: mdl-34647791

ABSTRACT

Purpose: 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. Methods: 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. Interview transcripts were thematically analyzed using the constant comparative method. To elucidate similarities and differences in caregiving experiences, findings were compared across parents with children diagnosed in three developmental periods: infancy-early childhood, age 0-6 (n = 9); pre-early adolescence, aged 9-14 (n = 5); and late adolescence-emerging adulthood, aged 16-27 (n = 6). Results: Across all developmental periods, parents described three similar caregiving experiences during the diagnosis period: being persistent to obtain a diagnosis, attending to the child's quality of life challenges, and attending to their other children's well-being. Among caregivers of younger children, persistence was motivated by parental intuition and challenges included coping with traumatic physical and psychological impacts of treatment procedures. For caregivers of late adolescents-early adults, persistence was motivated by the child's self-assessment and fertility-related concerns emerged. Conclusion: Results illustrate core issues for parent blood cancer caregivers and highlight ways to tailor supportive resources that facilitate good communication practices and shared decision-making to children's distinct developmental needs.


Subject(s)
Neoplasms , Quality of Life , Adolescent , Adult , Aged , Caregivers/psychology , Child , Child, Preschool , Humans , Infant , Infant, Newborn , Longevity , Middle Aged , Parents/psychology , Young Adult
15.
PLoS One ; 17(4): e0267161, 2022.
Article in English | MEDLINE | ID: mdl-35421205

ABSTRACT

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. METHOD: Investigators conducted telephone interviews with Florida-based clinicians who give dementia diagnoses either rarely or commonly. Interviews employed a semi-structured interview guide querying communication practices used by clinicians when giving dementia diagnoses and how clinicians learned to give dementia diagnoses. Investigators used a descriptive qualitative design to conduct a thematic analysis of data. RESULTS: Fifteen Florida-based clinicians participated, representing diverse backgrounds related to gender, race/ethnicity, specialty, and practice setting. Participants reported using patient- and family-centered communication practices including checking patient understanding, communicating empathically, and involving family members. Some clinicians explicitly asked patients and/or family members about their preferences regarding diagnosis disclosure; many clinicians tailored their disclosure based on patient and family characteristics or reactions. Some clinicians reported using specific diagnoses, while others used general terms such as "memory disorder." Clinicians reported positively framing information, including instilling hope, focusing on healthy behaviors, and discussing symptom management. Finally, clinicians provided patient/family education and arranged follow up. Clinicians reported learning approaches to dementia diagnosis disclosure through formal training and self-education. CONCLUSIONS: Diverse Florida-based clinicians described dementia disclosure practices largely consistent with published guidance, but clinicians varied on approaches relating to soliciting patient disclosure preferences and terminology used. Clinicians caring for diverse populations described that cultural background affects the disclosure process, but more research is needed regarding this finding and best practices for individuals from different backgrounds.


Subject(s)
Caregivers , Dementia , Caregivers/psychology , Dementia/diagnosis , Dementia/psychology , Disclosure , Family/psychology , Humans , Qualitative Research
16.
Health Serv Insights ; 15: 11786329221141829, 2022.
Article in English | MEDLINE | ID: mdl-36506598

ABSTRACT

The vast majority of individuals with dementia want to receive a diagnosis. Research suggests, however, that only a fraction of individuals with dementia receive a diagnosis and patients and families often feel the information is poorly explained. We thus aimed to assess clinician-reported barriers to dementia disclosure and recommendations for giving a dementia diagnosis. To accomplish this, we performed telephone interviews with 15 clinicians from different specialties using a semi-structured interview guide. Transcripts were analyzed thematically. Clinician-reported barriers fit 3 categories: patient and caregiver-related barriers, clinician-related barriers, and barriers related to the triadic interaction. Patient and caregiver-related barriers included lack of social support, misunderstanding the diagnosis, and denial. Clinician barriers included difficulty giving bad news, difficulty communicating uncertainty, and lack of time. Triadic interaction barriers included challenges meeting multiple goals or needs and family requests for non-disclosure. Recommendations for best practice included for clinicians to foster relationships, educate patients and family, and take a family-centered approach. Clinicians described recommendations for fostering relationships such as using empathic communication and developing and maintaining connection. Educating patients and families included tailoring communication, explaining how the diagnosis was reached, and following up. Family approaches included meeting with family members prior to delivering the diagnosis and involving the caregiver in the discussion. Findings may inform updated recommendations for best practices when communicating a dementia diagnosis.

17.
Implement Sci Commun ; 3(1): 95, 2022 Sep 06.
Article in English | MEDLINE | ID: mdl-36068605

ABSTRACT

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. County-level HPV vaccine initiation rates for 2018 were estimated from the Florida Department of Health's immunization registry and population counts. Implementation strategies were categorized by level of importance and feasibility using the Expert Recommendations for Implementing Change (ERIC) taxonomy. We compared the barriers and implementation strategies for HPV vaccination between tercile groups of counties by HPV vaccine initiation rates: highest (18 stakeholders), middle (27 stakeholders), and lowest (23 stakeholders). RESULTS: The majority of the 68 stakeholders were female (89.7%), non-Hispanic white (73.5%), and represented a variety of clinical and non-clinical occupations. The mentioned barriers represented five themes: healthcare access, clinician practices, community partnerships, targeted populations, and cultural barriers. Within themes, differences emerged between county terciles. Within healthcare access, the highest rate county stakeholders focused on transportation, lowest rate county stakeholders focused on lack of clinicians, and middle county stakeholders mentioned both. The number of ERIC quadrant I strategies, higher feasibility, and importance described decreased with the tercile for HPV vaccination: highest = 6, middle = 5, and lowest =3 strategies. CONCLUSIONS: The differing barriers and strategies between the highest, middle, and lowest vaccination rate counties suggest that a tailored and targeted effort within the lowest and middle counties to adopt strategies of the highest rate counties may reduce disparities.

18.
JMIR Cancer ; 8(3): e38722, 2022 Jul 05.
Article in English | MEDLINE | ID: mdl-35788019

ABSTRACT

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. METHODS: Eligible participants completed a preprogram survey. We assessed the feasibility of participants completing the intervention in the allotted time. Participants had 2 weeks to complete the 2-part, 90-minute online program and completed a postprogram survey that included program evaluation items and the Acceptability of Intervention Measure (AIM) using a 1-5 rating scale (5=strongly agree). RESULTS: Of 50 caregivers who initially expressed interest, 34 consented, and 30 completed the program and both surveys (88% completion rate). Caregivers had a mean age of 45.07 (SD 11.96) years and provided care for parents who had a mean age of 73.31 (SD 9.38) years. Caregivers were primarily daughters (n=22, 73%). Overall, scores on the AIM scale were high (mean 4.48, SD 0.67). Specifically, caregivers felt the content met their communication needs (mean 4.58, SD 0.62) and their own needs as a caregiver of a parent with a blood cancer (mean 4.39, SD 0.72). CONCLUSIONS: We demonstrated the feasibility and acceptability of the Healthy Communication Practice program, which aims to enhance family and clinical communication skills among caregivers of a parent with a blood cancer. Future studies will examine the efficacy of the program and its impact on both caregiver and patient communication and health outcomes.

19.
Patient Educ Couns ; 104(12): 2900-2911, 2021 12.
Article in English | MEDLINE | ID: mdl-34030929

ABSTRACT

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. We also examined the conceptual and operational definitions of CIH provided and whether those terms were explicitly operationalized. We aggregated the percentage, rate, or ratio of CIH users that communicated about CIH with their clinicians by disease type and geographical region. RESULTS: 7882 studies were screened and 89 included in the review. Studies used a wide range of conceptual and operational definitions for CIH, as well as 23 different terms to report communication related to reporting CIH usage. Usage varied by disease type and geographical region. CONCLUSIONS: Studies of CIH and CIH communication may measure different kinds of social and communicative phenomena, which makes comparison across international studies challenging. PRACTICE IMPLICATIONS: Future studies should employ standardized, replicable measures for defining CIH and for reporting CIH communication. Clinicians can incorporate questions about prior, current, and future CIH use during the medical visit.


Subject(s)
Complementary Therapies , Integrative Medicine , Communication , Delivery of Health Care , Humans
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