Providers' and survivors' perspectives on the availability and accessibility of surgery in gastrointestinal cancer care.

BACKGROUND: Surgery is essential for gastrointestinal (GI) cancer treatment. Many patients lack access to surgical care that optimizes outcomes. Scarce availability and/or low accessibility of appropriate resources may be the reason for this, especially in economically disadvantaged areas. This study aimed to investigate providers' and survivors' perspectives on barriers and facilitators to the availability and accessibility of surgical care. METHODS: Semistructured interviews informed by surgical disparities and access-to-care conceptual frameworks with purposively selected GI cancer providers and survivors in Alabama and Mississippi were conducted. Survivors were within 3 years of diagnosis of stage I to III esophageal, pancreatic, or colorectal cancer. Transcripts were analyzed using inductive thematic and content analysis techniques. Intercoder agreement was reached at 90 %. RESULTS: The 27 providers included surgeons (n = 11), medical oncologists (n = 2), radiation oncologists (n = 2), a primary care physician (n = 1), nurses (n = 8), and patient navigators (n = 3). This study included 36 survivors with ages ranging from 44 to 87 years. Of the 36 survivors, 21 (58.3 %) were male, and 11 (30.6 %) identified as Black. Responses were grouped into 3 broad categories: (i) transportation/geographic location, (ii) specialized care/testing, and (iii) patient-/provider-related factors. The barriers included lack and cost of transportation, reluctance to travel because of uneasiness with urban centers, low availability of specialized care, overburdened referral centers, provider-related referral biases, and low health literacy. Facilitators included availability of charitable aid, centralizing multidisciplinary care, and efficient appointment scheduling. CONCLUSION: In the Deep South, barriers and facilitators to the availability and accessibility of GI surgical cancer care were identified at the health system, provider, and patient levels, especially for rural residents. Our data suggest targets for improving the use of surgery in GI cancer care.

Using the TIDieR checklist to describe development and integration of a web-based intervention promoting healthy eating and regular exercise among older cancer survivors.

Objective: To facilitate replication and future intervention design of web-based multibehavior lifestyle interventions, we describe the rationale, development, and content of the AiM, Plan, and act on LIFestYles (AMPLIFY) Survivor Health intervention which provides healthy eating and exercise behavior change support for older cancer survivors. The intervention promotes weight loss, improvements in diet quality, and meeting exercise recommendations. Methods: The Template for Intervention Description and Replication (TIDieR) checklist was used to provide a comprehensive description of the AMPLIFY intervention, consistent with CONSORT recommendations. Results: A social cognitive theory web-based intervention founded on the core components of efficacious print and in-person interventions was conceptualized and developed through an iterative collaboration involving cancer survivors, web design experts, and a multidisciplinary investigative team. The intervention includes the AMPLIFY website, text and/or email messaging, and a private Facebook group. The website consists of: (1) Sessions (weekly interactive e-learning tutorials); (2) My Progress (logging current behavior, receiving feedback, setting goals); (3) Tools (additional information and resources); (4) Support (social support resources, frequently asked questions); and (5) Home page. Algorithms were used to generate fresh content daily and weekly, tailor information, and personalize goal recommendations. An a priori rubric was used to facilitate intervention delivery as healthy eating only (24 weeks), exercise only (24 weeks), or both behaviors concurrently over 48 weeks. Conclusions: Our TIDieR-guided AMPLIFY description provides pragmatic information helpful for researchers designing multibehavior web-based interventions and enhances potential opportunities to improve such interventions.

Examining decisional needs and contextual factors influencing fertility status assessment among young female survivors of childhood cancer: A sequential mixed methods study protocol.

INTRODUCTION: Female cancer survivors who received gonadotoxic cancer treatment are at risk for profound diminished ovarian reserve and/or primary ovarian insufficiency with resulting infertility, which can be associated with distress and decreased quality of life.. Despite prioritizing future parenthood, many survivors are unsure of the impact of their treatment on their future fertility, and little is known about the perceived reproductive health needs and factors associated with receipt of a fertility status assessment (FSA). There is a lack of developmentally appropriate reproductive health decisional support interventions available for emerging adult cancer survivors. This study will explore the perceived reproductive health needs of emerging adult female survivors of childhood cancer and to identify decisional and contextual factors that influence pursuit of FSA using an explanatory sequential quantitative to qualitative mixed methods design. METHODS AND ANALYSIS: This study will enroll 325 female survivors (aged 18 to 29 years and >1-year post treatment; diagnosed with cancer < age 21 years) from four cancer centers in the United States. Sociodemographic and developmental factors, reproductive knowledge and values, decisional needs, and receipt of an FSA will be assessed through a web-based survey. Informed by survey findings, a subset of participants will be recruited for qualitative interviews to explore decisional factors associated with uptake of an FSA. Clinical data will be abstracted from the medical records. Multivariable logistic regression models will be developed to identify factors associated with FSA and qualitative descriptive analysis will be used to develop themes from the interviews. Quantitative and qualitative findings will be merged using a joint display to develop integrated study conclusions and direct future interventional research.

Understanding and identifying the needs of parent caregivers of children with hydrocephalus: a qualitative study.

OBJECTIVE: Hydrocephalus is inherently unpredictable. Most parents whose child is diagnosed with hydrocephalus do not anticipate the diagnosis, nor can anyone predict if or when a child's shunt will fail and require emergency surgery. Previous research has shown that children with hydrocephalus and their caregivers experience significant posttraumatic stress symptoms secondary to the diagnosis. This study aims to understand caregiver experiences and needs, identify gaps in resources/support, and determine opportunities to improve care. METHODS: Semistructured interviews were conducted with parent caregivers of children with hydrocephalus to learn about their experiences with the hydrocephalus diagnosis, hospitalizations, surgeries, coping and support, challenges of caring for a child with hydrocephalus, and logistics for a proposed support program. De-identified interviews were audio-recorded, transcribed, and analyzed for themes. RESULTS: Thematic saturation was reached after 17 interviews. Five major themes emerged: 1) coping with the diagnosis, 2) received support, 3) hydrocephalus management, 4) implications for intervention, and 5) psychosocial stressors for caregivers. A top priority was balanced, trustworthy information delivered with compassion and updated throughout the child's life. Caregivers described a variety of coping strategies, but a majority reported a need for support in processing complex emotions and dealing with the uncertainty of their child's hydrocephalus. Most agreed that having a caregiver support network, medical professionals available for referrals and questions, and referrals to support services and therapies would facilitate feeling supported and providing the best care for their children. CONCLUSIONS: Parent caregivers are critical to the health and well-being of children with hydrocephalus, and it is essential to understand their experiences to improve care. Providing well-defined information, psychosocial support, and resources will help to equip parent caregivers to be advocates for their children and to improve both the caregiver and the child's quality of life.

Establishing nursing-sensitive quality indicators for pediatric oncology: An international mixed methods Delphi study.

INTRODUCTION: Nursing-sensitive indicators (NSIs) measure factors influencing nursing care quality and patient outcomes. Established NSIs reflect general and select specialty nursing practices. However, a core set of NSIs for international pediatric oncology nursing practice does not currently exist. Without valid and reliable quality indicators, the impact of nursing care on children and adolescents with cancer cannot be effectively measured and improved. The purpose of this study was to develop a preliminary core set of NSIs for international pediatric oncology nursing that would be important, actionable, and feasible to measure across varied resource settings and countries. DESIGN/METHODS: A multiphase sequential mixed methods research design, intersected with a classical Delphi method, was utilized. Through purposive snowball sampling, 122 expert pediatric oncology nurses from 43 countries participated. Round One: Panelists identified five potential NSIs and constructs. Open-ended responses were coded and categorized through descriptive content analysis and integrated into the next round. Round Two: Panelists selected their top 10 NSIs and constructs and ranked them by importance to patient care quality. Mean importance scores were calculated through reverse scoring; the top 10 NSIs and constructs were integrated into the next round. Round Three: Panelists ranked the top 10 NSIs and constructs by order of importance for this particular population, then rated each NSI/Construct for actionability and feasibility of measurement by Likert-scale. Rounds Two and Three were analyzed using descriptive statistics. Mixed methods meta-inferences were derived from the integration of Rounds One and Three findings. RESULTS: Eighty-five (70%) panelists from 38 countries completed all Delphi survey rounds. The preliminary core set of NSIs and constructs identified by the expert panel, and ranked in order of importance, were as follows: safe chemotherapy administration and handling, infection prevention/control, pediatric oncology nursing orientation program, early warning score system/recognition of patient deterioration, chemotherapy/biotherapy education/course, pain assessment/management, symptom assessment/management, patient and family education, palliative/end of life care, and continuing nursing education/competency. All NSIs and constructs were rated as actionable; all but palliative/end of life care were rated as feasible to measure. Each of the 10 NSIs and constructs were nominated in Round One by at least one expert panelist from low- and middle-income and high-income countries, and at least one panelist from the Americas. CONCLUSION: Preliminary core NSIs and constructs provide insight into common attributes of international pediatric oncology nursing practice that are important, actionable, and feasible for quality measurement. CLINICAL RELEVANCE: NSIs have the potential to drive quality improvement, guide comparison with other institutions, promote knowledge-sharing, and advance pediatric oncology nursing outcomes around the world. These NSIs and constructs may also be relevant to other pediatric and adult oncology settings.

Navigating job and cancer demands during treatment: A qualitative study of ovarian cancer patients.

OBJECTIVE: Our objective was to obtain perspectives from ovarian cancer patients on job demands, cancer demands, and workplace or cancer resources and strategies to manage the cancer-work interface using the cancer-work management conceptual framework. METHODS: We recruited ovarian cancer patients receiving systemic therapy who screened positive for financial distress using Comprehensive Score for Financial Toxicity <26. Interviews were conducted with participants about their costs of care, including employment concerns. Interviews were recorded, transcribed verbatim, and analyzed by three researchers using an inductive thematic analysis. RESULTS: Of 22 participants, the average age was 57 years old, 36% were Black, 68% had income <$40,000, 41% had public insurance, and 68% were being treated for recurrent disease. Job demands included decreased productivity, inability to return to work, and worry about losing a job or employer-based health insurance coverage. Cancer demands included physical and cognitive limitations due to cancer treatment and reliance on caregivers, especially for transportation. Workplace resources/strategies including having a supportive employer, modifying job responsibilities, and utilizing family medical leave. Cancer care resources/strategies included planning appointments ahead of time and utilizing resources, such as disability. CONCLUSIONS: Cancer care teams should consider screening patients for employment concerns; streamline care to minimize the side effects, time, and transportation demands of treatment on patients and caregivers; maximize utilization of available resources; and proactively communicate with employers to accommodate patients and caregivers who want or need to work.

Adapting MultiPLe behavior Interventions that eFfectively Improve (AMPLIFI) cancer survivor health: program project protocols for remote lifestyle intervention and assessment in 3 inter-related randomized controlled trials among survivors of obesity-related cancers.

BACKGROUND: Scalable, multiple behavior change interventions are needed to address poor diet, inactivity, and excess adiposity among the rising number of cancer survivors. Efficacy-tested diet (RENEW) and exercise (BEAT Cancer) programs were adapted for web delivery among middle-aged and older cancer survivors for the AMPLIFI study, a National Cancer Institute-funded, multi-site, program project. METHODS: Throughout the continental U.S., survivors of several obesity-related cancers are being recruited for three interconnected randomized controlled trials (RCTs). Projects 1 and 2 test 6-month diet or exercise interventions versus a wait-list control condition. Upon completion of the 6-month study period, the intervention participants receive the next behavior change sequence (i.e., diet receives exercise, exercise receives diet) and the wait-list control arm initiates a 12-month combined diet and exercise intervention. Project 3 tests the efficacy of the sequential versus simultaneous interventions. Assessments occur at baseline and semi-annually for up to 2-years and include: body mass index, health behaviors (diet quality, accelerometry-assessed physical activity/sleep), waist circumference, D3 creatine-assessed muscle mass, physical performance, potential mediators/moderators of treatment efficacy, biomarkers of inflammation and metabolic regulation, health care utilization, cost, and overall health. Four shared resources support AMPLIFI RCTs: 1) Administrative; 2) Adaptation, Dissemination and Implementation; 3) Recruitment and Retention; and 4) Assessment and Analysis. DISCUSSION: Representing a new generation of RCTs, AMPLIFI will exclusively use remote technologies to recruit, intervene and assess the efficacy of the newly-adapted, web-based diet and exercise interventions and determine whether sequential or combined delivery works best for at-risk (older, rural, racial minority) cancer survivors. TRIAL REGISTRATION: ClinicalTrials.gov , NCT04000880 . Registered 27 June 2019.

A lay navigator-led, early palliative care intervention for African American and rural family caregivers of individuals with advanced cancer (Project Cornerstone): Results of a pilot randomized trial.

BACKGROUND: The objective of this study was to assess the feasibility, acceptability, and potential efficacy of ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone-a lay navigator-led, early palliative care telehealth intervention for African American/Black and/or rural-dwelling family caregivers of individuals with advanced cancer (ClinicalTrials.gov identifier NCT03464188). METHODS: This was a pilot randomized trial (November 2019 to March 2021). Family caregivers of patients with newly diagnosed, stage III/IV, solid-tumor cancers were randomized to receive either an intervention or usual care. Intervention caregivers were paired with a specially trained lay navigator who delivered 6 weekly, 20-minute to 60-minute telehealth coaching sessions plus monthly follow-up for 24 weeks, reviewing skills in stress management, self-care, getting help, staying organized, and future planning. Feasibility was assessed according to the completion of sessions and questionnaires (predefined as a completion rate ≥80%). Acceptability was determined through intervention participants' ratings of their likelihood of recommending the intervention. Measures of caregiver distress and quality of life were collected at 8 and 24 weeks. RESULTS: Sixty-three family caregivers were randomized (usual care, n = 32; intervention, n = 31). Caregivers completed 65% of intervention sessions and 87% of questionnaires. Average ratings for recommending the program were 9.4, from 1 (not at all likely) to 10 (extremely likely). Over 24 weeks, the mean ± SE Hospital Anxiety and Depression Scale score improved by 0.30 ± 1.44 points in the intervention group and worsened by 1.99 ± 1.39 points in the usual care group (difference, -2.29; Cohen d, -0.32). The mean between-group difference scores in caregiver quality of life was -1.56 (usual care - intervention; d, -0.07). Similar outcome results were observed for patient participants. CONCLUSIONS: The authors piloted ENABLE Cornerstone, an intervention for African American and rural-dwelling advanced cancer family caregivers. The acceptability of the intervention and data collection rates were high, and the preliminary efficacy for caregiver distress was promising. LAY SUMMARY: To date, very few programs have been developed to support under-resourced cancer family caregivers. To address this need, the authors successfully pilot tested an early palliative care program, called Educate, Nurture, Advise, Before Life Ends (ENABLE) Cornerstone, for African American and rural family caregivers of individuals with advanced cancer. Cornerstone is led by specially trained lay people and involves a series of weekly phone sessions focused on coaching caregivers to manage stress and provide effective support to patients with cancer. The authors are now testing Cornerstone in a larger trial. If the program demonstrates benefit, it may yield a model of caregiver support that could be widely implemented.

Life after breast cancer: 'Being' a young African American survivor.

Objective: In the United States, 26,534 young women (≤45 years) were diagnosed with breast cancer in 2017. Young African American (AA) women have higher incidence and mortality rates than Whites and Hispanics. Yet, few published studies describe survivorship (life after breast cancer diagnosis) experiences among this group. Here, we explore the lived experience of young AA breast cancer survivorship (via quality of life [QOL]).Design: This phenomenological study was framed by the QOL Applied to Breast Cancer model. Fifteen young AA survivors from the Southern U. S. participated in two semi-structured interviews. Methods of transcendental phenomenology were used for data collection and analysis.Results: Five themes emerged from participants' (mean age = 35 years; survivorship = 4 years) descriptions of survivorship experience: (1) actively managing spiritual self, (2) actively managing physical self, (3) actively managing psychological self, (4) actively managing social self, and (5) seeking survivorship knowledge. Participants perceived survivorship as a labile 'new normal' and 'ongoing struggle,' in which spirituality and survivorship knowledge were key to restructuring their lives.Conclusions: Survivorship among young AA survivors was more fluid and complex than the QOL model explained. Findings describe young AA breast cancer survivorship and indicate areas of potential strengths and distress. Healthcare providers and ancillary staff must exercise cultural competence to assess and anticipate young AA survivors' needs and concerns. Implementing targeted survivorship interventions, accounting for cultural contexts (e.g. high spirituality) and need for age-specific survivorship information, may improve QOL among young AA survivors.

Developing a virtual assessment protocol for the AMPLIFI Randomized Controlled Trial due to COVID-19: From assessing participants' preference to preparing the team.

Background During the COVID-19 pandemic, in-person research assessments needed to be adapted to ensure safety of participants and staff. Participants' willingness to participate in research activities, how to prepare assessors to ensure data integrity, and the feasibility of modified protocols, were unknown. Within the AMPLIFI randomized clinical trial (RCT) for cancer survivors, we elicited participants' preferences and willingness to participate in Clinic, Home, or Virtual assessments, prepared assessors for, and implemented virtual assessments. Methods 1) We conducted phone surveys of potential AMPLIFI participants; 2) Based on survey results, we modified assessments from in-person to virtual visits (VV) by videoconference. Assessors were trained and certified, i.e., assessors recorded 3 assessments that were reviewed and scored by 2 investigators. The modified protocol was proposed to 62 participants: we report numbers of those who agreed to attend VV. Results 1) Survey results: Among 74 survey respondents, 44.6% preferred, 75.7% were willing to attend Clinic Visits; 32.4% preferred, 83.8% were willing to do VV; 23% preferred, 77% were willing to do Home Visits. Survivors 70+ were less likely than 50-69 years old to be willing to do VV: no other differences were noted by gender, race, rural status or education. 2) Assessment uptake: 66.1% agreed to attend VV, and of them 75.6% completed them. Conclusion Diverse research participants adapted to protocols that prioritize their safety, although older participants may be reluctant to do virtual assessments. Virtual assessments are feasible and research teams can rigorously prepare to collect quality data through them.

Features That Middle-aged and Older Cancer Survivors Want in Web-Based Healthy Lifestyle Interventions: Qualitative Descriptive Study.

BACKGROUND: With the increasing number of older cancer survivors, it is imperative to optimize the reach of interventions that promote healthy lifestyles. Web-based delivery holds promise for increasing the reach of such interventions with the rapid increase in internet use among older adults. However, few studies have explored the views of middle-aged and older cancer survivors on this approach and potential variations in these views by gender or rural and urban residence. OBJECTIVE: The aim of this study was to explore the views of middle-aged and older cancer survivors regarding the features of web-based healthy lifestyle programs to inform the development of a web-based diet and exercise intervention. METHODS: Using a qualitative descriptive approach, we conducted 10 focus groups with 57 cancer survivors recruited from hospital cancer registries in 1 southeastern US state. Data were analyzed using inductive thematic and content analyses with NVivo (version 12.5, QSR International). RESULTS: A total of 29 male and 28 female urban and rural dwelling Black and White survivors, with a mean age of 65 (SD 8.27) years, shared their views about a web-based healthy lifestyle program for cancer survivors. Five themes emerged related to program content, design, delivery, participation, technology training, and receiving feedback. Cancer survivors felt that web-based healthy lifestyle programs for cancer survivors must deliver credible, high-quality, and individually tailored information, as recommended by health care professionals or content experts. Urban survivors were more concerned about information reliability, whereas women were more likely to trust physicians' recommendations. Male and rural survivors wanted information to be tailored to the cancer type and age group. Privacy, usability, interaction frequency, and session length were important factors for engaging cancer survivors with a web-based program. Female and rural participants liked the interactive nature and visual appeal of the e-learning sessions. Learning from experts, an attractive design, flexible schedule, and opportunity to interact with other cancer survivors in Facebook closed groups emerged as factors promoting program participation. Low computer literacy, lack of experience with web program features, and concerns about Facebook group privacy were important concerns influencing cancer survivors' potential participation. Participants noted the importance of technology training, preferring individualized help to standardized computer classes. More rural cancer survivors acknowledged the need to learn how to use computers. The receipt of regular feedback about progress was noted as encouragement toward goal achievement, whereas women were particularly interested in receiving immediate feedback to stay motivated. CONCLUSIONS: Important considerations for designing web-based healthy lifestyle interventions for middle-aged and older cancer survivors include program quality, participants' privacy, ease of use, attractive design, and the prominent role of health care providers and content experts. Cancer survivors' preferences based on gender and residence should be considered to promote program participation.

Cancer-Related Symptoms and Cognitive Intervention Adherence Among Breast Cancer Survivors: A Mixed-Methods Study.

BACKGROUND: Breast cancer survivors (BCSs) experience long-term symptoms of cancer and treatment, which may exacerbate cognitive function and ability to adhere to interventions aimed at improving cognition. OBJECTIVE: The intent of this study was to explore the relationship between selected cancer-related symptoms and adherence to the Speed of Processing in Middle Aged and Older BreAst Cancer SuRvivors (SOAR) cognitive training (CT) intervention among BCSs residing in Alabama. METHODS: A sequential quantitative to qualitative (Quan→Qual) mixed-methods design was used. First, the relationship between selected cancer-related symptoms and adherence to SOAR among BCSs (n = 30) was examined using self-reported questionnaire data. Follow-up semistructured interviews with 15 purposefully selected participants (adherent and nonadherent) were conducted to explore how symptoms contributed to/explained differences in adherence to SOAR. Data were analyzed using RStudio and NVivo software. RESULTS: Spearman's ρ correlation suggested relationships between adherence and perceived cognitive impairment, depressive symptoms, and sleep quality. Inductive thematic analysis yielded 4 themes: (1) experiences of cancer-related symptoms, (2) influences of CT, (3) adherence to CT, and (4) environment for CT. Integration of quantitative and qualitative results revealed that experiences of and responses to CT and cancer-related symptoms differently shape adherence to CT among BCSs. CONCLUSIONS: To aid in cognitive intervention adherence among BCSs, future studies may consider applying a comprehensive approach aimed at addressing concurrent cancer-related symptoms. IMPLICATIONS FOR PRACTICE: Clinicians can routinely assess cognition and provide education and resources for management of cancer-related symptoms.

Evolution and Conceptual Foundations of Nonhospice Palliative Care.

The term nonhospice palliative care was developed to describe and differentiate palliative care that is delivered prior to the end of life. The purpose of this article is to better define and clarify this concept using Rodgers's evolutionary concept analysis method. Attributes of nonhospice palliative care include (a) patient- and family-centered care, (b) holistic care, (c) interdisciplinary team, (d) early intervention, (e) quality of life-enhancing, (f) advanced care planning, (g) any age of the patient, (h) at any stage in illness, (i) care coordination, (j) concurrent curative treatment options, and (k) provided by primary and specialist providers. Nonhospice palliative care antecedents are serious illness, education, and access to services; consequences include benefits for the patient, family, provider, and health care system. Offering a clearly defined concept may allow for changes in health care to improve access to these services.

A Formative Evaluation of Patient and Family Caregiver Perspectives on Early Palliative Care in Chronic Obstructive Pulmonary Disease across Disease Severity.

Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity.Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life, anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages.Results: Patients (n = 10) were a mean (±SD) age of 60.4 (±7.5) years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n = 10) were a mean age of 58.3 (±8.7) years, 40% African American, and 10% male. Overall, 30% (n = 6) of participants had poor quality of life, 45% (n = 9) had moderate-severe anxiety symptoms, 25% (n = 5) had moderate-severe depressive symptoms, and 40% (n = 8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared with those with moderate-severe COPD.Conclusions: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.

How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study.

AIMS: Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver's role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. METHODS: Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach. FINDINGS: Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient's partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported "fair" or "poor" health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients' upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient's treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing "what if" scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. CONCLUSIONS: These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.

Perceptions of a Breast Cancer Survivorship Intervention: Pearls of Wisdom from Young African American Women.

PURPOSE: African American (AA) women ages 20-44 develop breast cancer at higher rates compared with Caucasian women. These young survivors (<45 years) also have disparate quality of life (QOL). Little is known about survivorship information needs of young AA survivors. The purpose of this study was to explore young AA survivors' perceptions of an existing QOL intervention for breast cancer survivors, identifying information needs to address using a targeted intervention. METHODS: Two semistructured interviews were conducted with each of 15 young AA survivors who had completed breast cancer treatment. This article focuses on the second interview in which young AA survivors reviewed intervention materials and described their perceptions of the intervention. Content analysis was used to identify themes, which were validated by participants. RESULTS: Participants (n: 15; mean age at study entry: 35 years) reported that the existing evidence-based intervention discussed relevant but general survivorship information. They suggested adapting the information for young AA survivors: addition of content geared toward finances, how to better communicate to manage dating and relationships, how to engage in healthful activities, and how to find local resources for any stage of survivorship. Furthermore, they suggested multiple modes of information delivery and inclusion of diverse imagery. CONCLUSION: Engaging young AA survivors yielded pearls of wisdom, highlighting the general nature of an existing intervention and suggesting adaptations to meet young AA survivors' information needs. Applying such pearls can be a powerful method to target survivorship interventions for this disparate group of cancer survivors.

Black mother's intention to vaccinate daughters against HPV: A mixed methods approach to identify opportunities for targeted communication.

OBJECTIVE: The cervical cancer disparity continues to exist and has widened between Black and non-Hispanic White women. Human Papillomavirus (HPV) vaccines could potentially reduce this disparity, yet remain underused among Black female adolescents. We investigated psychosocial and cultural factors associated with Black mothers' intentions to vaccinate their daughters against HPV, and explored views toward a HPV vaccine mandate. METHODS: In this quantitative dominant, mixed methods study, cross sectional surveys (n=237) and follow-up semi-structured interviews (n=9) were conducted with Black mothers of daughters. A 2-step logistic regression determined factors associated with Black mothers' intention. Thematic content analysis determined emerging themes. RESULTS: Perceived susceptibility (p=.044), perceived barriers (p<.001), and subjective norms (p=.001) were significant predictors of maternal HPV vaccination intentions. Follow-up interviews provided insight into factors influencing mothers' intentions. Mothers with low intentions did not perceive their daughter to be currently sexually active or in near future, thus, not at HPV risk. Pediatricians were identified as the most influential person on maternal decision-making if there was a pre-existing relationship. However, many mothers had not received a pediatricians' recommendation for their daughters. Barriers influencing mother's decision-making include knowledge, daughters' age, and mistrust in pharmaceutical companies and physicians. Mothers were not in favor of the HPV vaccine mandate. CONCLUSIONS: Findings demonstrate the need to develop and evaluate physician-led interventions on HPV and vaccine importance, and engage these mothers in intervention development to build trust between physicians, researchers, and Black mothers to improve HPV vaccine uptake in Black female adolescents.

Adapting an Early Palliative Care Intervention to Family Caregivers of Persons With Advanced Cancer in the Rural Deep South: A Qualitative Formative Evaluation.

CONTEXT: There is a scarcity of early palliative care interventions to support family caregivers of persons with advanced cancer living in the rural Southern U.S. OBJECTIVE: The objective of this study was to adapt the content, format, and delivery of a six session, palliative care, telehealth intervention with monthly follow-up for rural family caregivers to enhance their own self-care and caregiving skills. METHODS: Qualitative formative evaluation consisting of one-on-one, semistructured interviews with rural-dwelling persons with metastatic cancer (n = 18), their primary family caregiver (n = 20), and lay patient navigators (n = 26) were conducted to elicit feedback on a family caregiver intervention outline based on published evidence-based interventions. Transcribed interviews were analyzed using a thematic analysis approach. Coinvestigators reviewed and refined preliminary themes. RESULTS: Participants recommended that intervention topical content be flexible and has an adaptable format based on continuous needs assessment. Sessions should be 20 minutes long at minimum, and additional sessions should be offered if requested. Faith and spirituality is essential to address but should not be an overarching intervention theme. Content needs to be communicated in simple language. Intervention delivery via telephone is acceptable, but face-to-face contact is desired to establish relationships. Other Internet-based technologies (e.g., video-conferencing) could be helpful, but many rural dwellers may not be technology savvy or have Internet access. Most lay navigators believed they could lead the intervention with additional training, protocols for professional referral, and supervision by specialty-trained palliative care clinicians. CONCLUSIONS: A potentially scalable palliative care intervention is being adapted for family caregivers of rural-dwelling persons with advanced cancer and will undergo piloting in a small-scale randomized controlled trial.

Development of a Theory-based, Sociocultural Instrument to Assess Black Maternal Intentions to Vaccinate Their Daughters Aged 9 to 12 Against HPV.

The human papillomavirus (HPV) vaccine could assist in reducing the cervical cancer disparity existing between Black and White women. Understanding factors influencing Black maternal intentions to vaccinate their daughter is essential in improving vaccination uptake. However, existing instruments do not comprehensively assess factors (e.g., culture) influencing maternal intentions. This paper describes the development of the Human Papillomavirus Vaccination Survey for Black Mothers with Girls Aged 9 to 12 (HPVS-BM), the first instrument to measure knowledge, attitudes, subjective norms, and cultural beliefs relating to Black maternal intentions to vaccinate their daughters aged 9 to 12 years against HPV. The items and scales were refined using content review by experts, as well as cognitive interviews and pilot testing with target audience participants. The final version of the HPVS-BM was administered to 242 Black mothers with adolescent daughters. Internal reliability was determined using Cronbach's alpha. An a priori hypothetical model was developed to determine convergent and discriminant validity. All scales of the HPVS-BM had an acceptable internal reliability of 0.70 or higher. The intention scale of HPVS-BM was significantly correlated (p < .05) with perceived benefits, perceived barriers, and subjective norms, supporting strong convergent validity. Moderate discriminant construct validity was also demonstrated. Exhibiting good psychometrics, this instrument could be used by healthcare researchers and professionals to develop programs to increase HPV vaccination among Black adolescent females aimed at reducing the racial disparities in cervical cancer. Further psychometric testing of this survey tool for understanding factors influencing maternal intentions is warranted.

Understanding and improving health education among first-time parents of infants with sickle cell anemia in Alabama: a mixed methods approach.

With the increase in access to medical information, parents can acquire health information from multiple sources. An understanding of parents' reactions to a newborn infant's diagnosis of sickle cell anemia and how they acquire knowledge can identify parent beliefs and preferences about the process of sickle cell education. This study utilized a sequential exploratory mixed methods design. First, qualitative interviews were conducted with 8 parents of infants with sickle cell anemia to understand the process of health education. Second, quantitative surveys were conducted with 22 other parents to test qualitative findings. Parents of infants with sickle cell anemia expressed a high level of fear at the time of notification of a positive screen. Parents desired an understanding of how to identify acute complications of disease and how sickle cell will alter their child's life. Parents actively sought information at the time they were told their child had sickle cell disease. Sickle cell education should begin at time of notification of positive newborn screening results and address identified parent concerns. Health care providers should build trust with parents and provide them with immediate access to educational materials. Hematologists should work with primary care providers to develop complementary educational programs and resources.