Understanding social network support, composition, and structure among cancer caregivers.

OBJECTIVE: We examined the social network support, composition, and structure of pediatric cancer caregivers. METHODS: We used a self-report survey to collect egocentric social network data from 107 caregivers of pediatric cancer patients and calculated descriptive statistics to examine cancer-related support network composition, function, and structure. We then ran logistic regressions to examine the relationships between network characteristics and overall satisfaction with social support. RESULTS: Family members were the most common source of emotional support and logistical support, and health care providers were the most common source of informational support. Participants perceived the "most helpful" forms of support as being: (1) emotional support from family and health care providers; (2) informational support from health care providers and other cancer caregivers; and (3) logistical support from family. Overall, caregivers wished that 9.8% of their network ties had provided more support, with family members being the most common alter type to disappoint caregivers and offer less support than needed/expected. Caregivers who reported higher network disappointment (having network members who offered less support than needed/expected) were significantly less satisfied with emotional support than those with lower network disappointment (Odds Ratio = 0.18, p = 0.02), and caregivers with higher network disappointment were significantly less satisfied with logistical support compared to those with lower network disappointment (Odds Ratio = 0.14, p = 0.01). CONCLUSION: Our results show differences in the nature of social support provided by different types of network members. These findings have implications for tailoring social network interventions to improve caregiver and family outcomes.

Adapting Community Educational Programs During the COVID-19 Pandemic: Comparing the Feasibility and Efficacy of a Lung Cancer Screening Educational Intervention by Mode of Delivery.

Few eligible patients receive lung cancer screening. We developed the Lung AIR (awareness, information, and resources) intervention to increase community education regarding lung cancer screening. The intervention was designed as an in-person group intervention; however, the COVID-19 pandemic necessitated adapting the mode of delivery. In this study we examined intervention feasibility and efficacy overall and by mode of delivery (in-person group vs. one-on-one phone) to understand the impact of adapting community outreach and engagement strategies. Feasibility was examined through participant demographics. Efficacy was measured through pre/post knowledge, attitudes, and beliefs about lung cancer screening, and intention to complete screening. We reached N = 292 participants. Forty percent had a household income below $35,000, 58% had a high school degree or less, 40% were Hispanic, 57% were Black, and 84% reported current or past smoking. One-on-one phone sessions reached participants who were older, had lower incomes, more current smoking, smoked for more years, more cigarettes per day, lower pre-intervention lung cancer screening knowledge, and higher pre-intervention fear and worry. Overall pre/post test scores show significant increases in knowledge, salience, and coherence, and reduced fear and worry. Participants in the one-on-one phone sessions had significantly higher increases in salience and coherence and intention to complete screening compared to participants in the in-person group sessions. The Lung AIR intervention is a feasible and effective community-based educational intervention for lung cancer screening. Findings point to differences in reach and efficacy of the community-based intervention by mode of delivery.

Behavioral parenting skills as a novel target for improving medication adherence in young children: Feasibility and acceptability of the CareMeds intervention.

In pediatric cancer care, medication non-adherence is a significant driver of avoidable suffering and death. There is a lack of interventions designed for families of young children, where patient medication refusal/avoidance is a common barrier to adherence. We developed the CareMeds intervention which focuses on caregiver skills training to help young children take medicine calmly and without use of restraint techniques. The goal of this preliminary study was to assess the acceptability and feasibility of the CareMeds intervention. Caregivers of pediatric cancer patients (ages 2-10) whose children were on a home-based oral medication regimen were recruited to participate. Feasibility was examined through study enrollment and retention rates as well as reasons for refusal and drop out. Acceptability was evaluated through usability of and engagement with intervention components and an acceptability questionnaire. Feasibility: We recruited N = 9 caregivers to participate in this intervention pilot study and had a 75% enrollment rate. Reasons for declining included scheduling concerns (n = 2) and lack of interest (n = 1). The participant retention rate was 100% with 100% adherence to intervention sessions. Acceptability: Parents rated the sessions and resource materials as acceptable and reported frequent use of skills taught in the intervention. The CareMeds intervention is an acceptable and feasible strategy for caregivers of pediatric cancer patients and warrants future research to examine the efficacy of behavioral parenting skills interventions to improve medication adherence in young children.

Expanding the Understanding of Content of End-of-Life Dreams and Visions: A Consensual Qualitative Research Analysis.

Background: Research has established End-of-Life Dreams and Visions (ELDVs) as prevalent, meaningful valid experiences that may help patients cope with illness and approaching death. However, no inductive qualitative analysis has explored the phenomenology of ELDVs from the perspective of hospice homecare patients. Objective: The purpose of this study is to evaluate the content of ELDVs by using a rigorous qualitative approach. Design: Five hundred forty-eight ELDVs were collected from weekly interviews of hospice homecare patients and analyzed by using Consensual Qualitative Research Methodology. Settings/Subject: Participants were enrolled in a county-wide hospice homecare program between January 2013-March 2015. Results: The following domains emerged: (1) Interpersonal, (2) Affective Experience and Reflection, (3) Activities, and (4) Setting/Location. Conclusions: This study suggests that ELDV content may include a broader spectrum of experiences that reflect waking life than previously believed. Clinical implications suggest that it may be important for providers to engage with ELDVs, as they are psychologically significant experiences that may be a source of clinical insight.

Life Course Stage and Social Support Mobilization for End-of-Life Caregivers.

Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

Interventions to deprescribe potentially inappropriate medications in the elderly: Lost in translation?

WHAT IS KNOWN AND OBJECTIVE: Use of potentially inappropriate medications (PIMs) remains common in older adults, despite the easy availability of screening tools such as the Beers and Screening Tool of Older Person's Prescriptions (STOPP) criteria. Multiple published studies have implemented these screening tools to encourage deprescribing of PIMs, with mixed results. Little is known about the reasons behind the success or failure of these interventions, or what could be done to improve their impact. Implementation science (IS) provides a set of theories, models and frameworks to address these questions. The goal of this study was to conduct a focused narrative review of the deprescribing literature through an IS lens-to determine the extent to which implementation factors were identified and the intermediate steps in the intervention were measured. A better understanding of the existing literature, including its gaps, may provide a roadmap for future research. METHODS: PubMed search from 2000-2019 using appropriate MeSH headings. INCLUSION CRITERIA: controlled trials or prospective cohort studies intended to reduce PIMs in the elderly that used hospitalizations and/or emergency department visits as outcome measures. Studies were reviewed to identify potential implementation factors (known as determinants), using the Consolidated Framework for Implementation Research (CFIR) as a guide. In addition, intermediate outcomes were extracted. RESULTS AND DISCUSSION: Of the 548 reviewed abstracts, 14 studies met the inclusion criteria and underwent detailed analysis. Of the 14 studies, 10 acknowledged potential implementation determinants that could be mapped onto CFIR. The most commonly identified determinant was the degree of pharmacist integration into the medical team (seven of 14 studies), which mapped onto the CFIR construct of 'networks and communication'. Several important CFIR constructs were absent in the reviewed literature. Intermediate measures were captured by 12 of the 14 reviewed papers, but the choice of measures was inconsistent across studies. WHAT IS NEW AND CONCLUSION: In recent high-quality studies of deprescribing interventions, we found limited acknowledgement of factors known to be important to successful implementation and inconsistent reporting of intermediate outcomes. These findings indicate missed opportunities to understand the factors underlying study outcomes. As a result, we run the risk of rejecting worthwhile interventions due to negative results, when the correct interpretation might be that they failed in implementation. In other words, they were 'lost in translation'. Studies that rigorously examine and report on the implementation process are needed to tease apart this important distinction.

A pharmacist-led pilot program to facilitate deprescribing in a primary care clinic.

OBJECTIVE: To develop and pilot-test a model in which a community-based clinical pharmacist was incorporated as part of a Medicare Annual Wellness Visit (AWV) to make deprescribing recommendations targeted at potentially inappropriate medications (PIMs) in seniors. SETTING: A family medicine patient-centered medical home (PCMH) clinic in Buffalo, NY. PRACTICE DESCRIPTION: Implementation and evaluation of a pilot program incorporating a pharmacist-provided medication review targeting PIMs in seniors as part of a Medicare AWV. PRACTICE INNOVATION: A community pharmacy-based clinical pharmacist provided face-to-face medication reviews for patients older than 65 years as part of their AWV with a focus on deprescribing PIMs. No clinical pharmacy service existed at the practice when this program was implemented. EVALUATION: Identified PIMs, pharmacist recommendations, recommendation acceptance rate, time spent on intervention, health care utilization at 6 months postvisit, and barriers to implementation. RESULTS: Of the 21 patients enrolled, 13 unique patients received a total of 20 deprescribing recommendations from the pharmacist. The overall acceptance rate for pharmacist recommendations was 20%. The pharmacist spent a mean (± SD) of 34 (± 6) minutes per patient encounter. One patient in the intervention group was hospitalized, and 1 was seen in the emergency department (ED) during the 6-month follow-up period compared with 1 patient in the control group who had an ED visit. We identified multiple logistical and organizational barriers to the implementation of the intervention. CONCLUSION: In this prospective pilot study, a workflow to include a pharmacist medication review to facilitate deprescribing in the primary care setting was tested. We encountered several barriers to integrating the pharmacist into the AWV workflow to deliver the intervention. Future pragmatic clinical trials are warranted to improve provider awareness and comfort with deprescribing PIMs in seniors.

Health Care Provider Perspectives on Pre-exposure Prophylaxis: A Qualitative Study.

Although pre-exposure prophylaxis (PrEP) requires a prescription from a health care provider, we lack unanimity in guidelines for the identification of the ideal provider type to prescribe PrEP. The purpose of our study was to understand clinician perspectives on provider categories to determine who is best suited to prescribe this medication to HIV-uninfected patients. We conducted 28 in-depth interviews between September 2017 and January 2018 with current prescribers of PrEP. Qualitative findings indicated that providers were split on recommended PrEP prescriber type. Five themes emerged that centered on the explicit identification of the issue of opportunity for providers to educate their patients on PrEP and offer this medication to at-risk populations. To effectively maximize presentation for care and subsequently amplify uptake of PrEP, growing the base of providers who offer PrEP to eligible patients can provide a meaningful public health impact on reducing HIV incidence.

Deciphering the Signal From the Noise: Caregivers' Information Appraisal and Credibility Assessment of Cancer-Related Information Exchanged on Social Networking Sites.

With the rise in the use of the Internet for health-related purposes, social networking sites (SNSs) have become a prominent platform for cancer communication and information exchange. Studies of cancer communication on SNS have mostly focused on understanding the quantity, content, quality, and user engagement (eg, likes and comments) with cancer-related information on SNS. There is less of an understanding of when and why people coping with cancer turn to SNS for cancer-related information, and how users appraise the credibility of cancer-related information obtained on SNS. In this study, we use data from in-depth qualitative interviews with 40 primary caregivers of pediatric patients with cancer to examine how cancer caregivers engage in information appraisal and credibility assessment of cancer-related information obtained on SNS. Findings show that cancer caregivers turned to SNS for cancer-related information because information on SNS was immediate, targeted in response to specific caregiver questions and concerns, and tailored to the specific information needs of cancer caregivers. Cancer caregivers evaluated the credibility of cancer-related information obtained on SNS through assessment of the SNS user who posted the information, frequency the same information was shared, and external corroboration. Findings have important implications for cancer communication and information interventions and point to elements of SNS cancer communication that can be integrated into health professional-facilitated communication and cancer information strategies.

Challenges to and Strategies for Formal Service Utilization among Caregivers in an Underserved Community.

Family caregivers face enormous challenges when attempting to oversee the medical, legal, financial, and daily affairs of loved ones with chronic or life-limiting illness. While formal services and agencies exist to assist caregivers with some of these tasks, caregivers in underserved communities do not utilize these services, or utilize them with unsatisfactory results. This study used focus groups (N = 5 groups) with underserved, minority caregivers (N = 22) to explore their experiences related to care provision, including barriers to support service use and challenges navigating systems related to the broad spectrum of caregiving demands. Thematic content analysis revealed three main themes: (1) prior difficulties with formal service use, (2) difficulties navigating financial, legal, and medical systems, and (3) caregivers' personal strategies to address challenges associated with formal service use and systems navigation. Findings from this study identify underserved caregivers' challenges in utilizing formal services, as well as caregiver-identified strategies for supporting their caregiving activities.

Cigarette use and smoking beliefs among older Americans: findings from a nationally representative survey.

Background: Between 2005 and 2015, the prevalence of smoking among US adults has decreased for all age subgroups, except those aged 65 and older. Aim: In order to identify potential correlates of smoking behaviors in older adults, this research examined associations between age, smoking beliefs, and quitline utilization. Methods: Self-reported, nationally representative data from the Health Information National Trends Survey 2015 cycle (HINTS-FDA) were used (n = 3738). Multivariable logistic regression analyses examined associations between sociodemographic characteristics and beliefs about smoking behaviors. All analyses were conducted with jackknife estimation using sampling weights. Results: Among all survey respondents, 10.5% of those aged 65+ were current smokers (smoked 100 lifetime cigarettes and currently smoked every day or some days). These older adults, compared to those aged 18-29 years, had significantly higher odds of agreeing that smoking behavior is something one can do little to change (AOR = 1.89, 95% CI =1.08, 3.28) and agreeing that nicotine is the substance that causes cancer (AOR = 3.93, 95% CI = 2.17, 7.12). Post hoc analyses compared midlife adults (ages 50-64) with older adults (ages 65+), and indicated older adults had lower odds of having used a quitline/smoking cessation website (AOR = 0.36, 95% CI = 0.14, 0.94, p = 0.04) compared to their midlife peers. Discussion: US adults aged 65 and older hold erroneous beliefs about cigarette smoking behaviors and are less likely to utilize quitline supports. This may be contributing to the stagnant smoking rates among older adults. Smoking cessation efforts targeting older adult Americans are critical in order to stem tobacco use among all Americans.

Caregiver informational support in different patient care settings at end of life.

Caregivers of the terminally ill face many complicated tasks including providing direct patient care, communicating with clinicians, and managing the logistical demands of daily activities. They require instructive information at all points in the illness process and across several settings where patients receive end-of-life care. This study examines how the setting where a patient receives end-of-life care affects caregivers' informational support needs by thematically analyzing data from caregiver interviews and clinical observations. Caregivers providing care for patients at home received informational support related to meeting patients' mobility, medication, and nutritional needs. Caregivers who provided care remotely received informational support to navigate transitions between patient care settings or long-term care arrangements, including financial considerations and insurance logistics. The findings document that interventions designed to enhance information for caregivers should account for caregiving context and that health care providers should proactively and repeatedly assess caregiver information needs related to end-of-life patient care.

End-of-Life Caregiver Social Support Activation: The Roles of Hospice Clinicians and Professionals.

Caregivers of those with life-limiting illness face many complicated tasks, including providing direct patient care, communicating with professionals, and managing the logistical demands of daily activities. To assist with caregiving responsibilities, caregivers require social support from social network members at all points in the illness process. This study analyzes themes from interviews with 61 caregivers of patients enrolled in hospice services to identify the types of support caregivers mobilize from new social network members for social support during the end-of-life care process. Themes indicate that caregivers receive accessible, immediate, caregiver-centered emotional support from hospice health care professionals, and situationally tailored, understandable informational support from other types of professionals. In addition, caregivers received overlapping emotional and informational support from hospice health care professionals. Findings enhance the understanding of how caregivers receive tailored emotional and informational support.

Is Cancer Information Exchanged on Social Media Scientifically Accurate?

Cancer patients and their caregivers are increasingly using social media as a platform to share cancer experiences, connect with support, and exchange cancer-related information. Yet, little is known about the nature and scientific accuracy of cancer-related information exchanged on social media. We conducted a content analysis of 12 months of data from 18 publically available Facebook Pages hosted by parents of children with acute lymphoblastic leukemia (N = 15,852 posts) and extracted all exchanges of medically-oriented cancer information. We systematically coded for themes in the nature of cancer-related information exchanged on personal Facebook Pages and two oncology experts independently evaluated the scientific accuracy of each post. Of the 15,852 total posts, 171 posts contained medically-oriented cancer information. The most frequent type of cancer information exchanged was information related to treatment protocols and health services use (35%) followed by information related to side effects and late effects (26%), medication (16%), medical caregiving strategies (13%), alternative and complementary therapies (8%), and other (2%). Overall, 67% of all cancer information exchanged was deemed medically/scientifically accurate, 19% was not medically/scientifically accurate, and 14% described unproven treatment modalities. These findings highlight the potential utility of social media as a cancer-related resource, but also indicate that providers should focus on recommending reliable, evidence-based sources to patients and caregivers.

Where people look for online health information.

OBJECTIVES: To identify health-related websites Americans are using, demographic characteristics associated with certain website type and how website type shapes users' online information seeking experiences. METHODS: Data from the Health Information National Trends Survey 4 Cycle 1 were used. User-identified websites were categorised into four types: government sponsored, commercially based, academically affiliated and search engines. Logistic regression analyses examined associations between users' sociodemographic characteristics and website type, and associations between website type and information search experience. RESULTS: Respondents reported using: commercial websites (71.8%), followed by a search engines (11.6%), academically affiliated sites (11.1%) and government-sponsored websites (5.5%). Older age was associated with the use of academic websites (OR 1.03, 95% CI 1.02, 1.04); younger age with commercial website use (OR 0.97, 95% CI 0.95, 0.98). Search engine use predicted increased levels of frustration, effort and concern over website information quality, while commercial website use predicted decreased levels of these same measures. DISCUSSION: Health information seekers experience varying levels of frustration, effort and concern related to their online searching. CONCLUSION: There is a need for continued efforts by librarians and health care professionals to train seekers of online health information to select websites using established guidelines and quality criteria.

Cancer Communication on Social Media: Examining How Cancer Caregivers Use Facebook for Cancer-Related Communication.

BACKGROUND: Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization. Less is known about how people communicate about cancer on personal Facebook pages. OBJECTIVE: In this study, we expand upon previous research by examining how cancer caregivers use personal Facebook pages for cancer-related communication. METHODS: We examined themes in cancer-related exchanges through a content analysis of 12 months of data from 18 publically available Facebook pages hosted by parents of children with acute lymphoblastic leukemia (15 852 total posts). RESULTS: Six themes emerged: (1) documenting the cancer journey, (2) sharing emotional strain associated with caregiving, (3) promoting awareness and advocacy about pediatric cancer, (4) fundraising, (5) mobilizing support, and (6) expressing gratitude for support. CONCLUSIONS: Building upon previous research documenting the increasing use of social media for health-related communication and support, our findings show that personal Facebook pages offer a platform for cancer caregivers to share their cancer-related experiences, promote advocacy and awareness, and mobilize social support. IMPLICATIONS FOR PRACTICE: Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer. Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information, and support.

Communication and Exchange of Specialized Health-Related Support Among People With Experiential Similarity on Facebook.

Social support is an important factor that shapes how people cope with illness, and health-related communication among peers managing the same illness (network ties with experiential similarity) offers specialized information, resources, and emotional support. Facebook has become a ubiquitous part of many Americans' lives, and may offer a way for patients and caregivers experiencing a similar illness to exchange specialized health-related support. However, little is known about the content of communication among people who have coped with the same illness on personal Facebook pages. We conducted a content analysis of 12 months of data from 18 publicly available Facebook pages hosted by parents of children with acute lymphoblastic leukemia, focusing on communication between users who self-identified as parents of pediatric cancer patients. Support exchanges between users with experiential similarity contained highly specialized health-related information, including information about health services use, symptom recognition, compliance, medication use, treatment protocols, and medical procedures. Parents also exchanged tailored emotional support through comparison, empathy, encouragement, and hope. Building upon previous research documenting that social media use can widen and diversify support networks, our findings show that cancer caregivers access specialized health-related informational and emotional support through communication with others who have experienced the same illness on personal Facebook pages. These findings have implications for health communication practice and offer evidence to tailor M-Health interventions that leverage existing social media platforms to enhance peer support for patients and caregivers.

The architecture of support: The activation of preexisting ties and formation of new ties for tailored support.

This study examines differences in the resources, information, and support parents coping with pediatric cancer accessed from different types of network contacts. Using interviews with parents of childhood cancer patients (N = 80 parents), we examine (1) if parents rely on different types of network ties to access tailored information, resources or support; (2) differences in the nature or utility of information, resources, and support offered by different types of network contacts; and (3) the role of health-related professionals in brokering new network ties. Findings show that after a child's cancer diagnosis, parents received support from a broad portfolio of network members, which included preexisting network ties to friends and families as well as the formation of new ties to other cancer families and health-related professionals. Family, friends, and neighbors offered logistical support that aided balancing preexisting work and household responsibilities with new obligations. Parents formed new ties to other families coping with cancer for tailored health-related emotional and informational support. Health-related professionals served as network brokers, who fostered the development of new network ties and connected parents with supportive resources.