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.

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.

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.

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.

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.