Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program.

Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.

Perceptions of patient-provider communication in breast and cervical cancer-related care: a qualitative study of low-income English- and Spanish-speaking women.

To explore patient perceptions of patient-provider communication in breast and cervical cancer-related care among low-income English- and Spanish-speaking women, we examined communication barriers and facilitators reported by patients receiving care at safety net clinics. Participants were interviewed in English or Spanish after receiving an abnormal breast or cervical cancer screening test or cancer diagnosis. Following an inductive approach, interviews were coded and analyzed by the language spoken with providers and patient-provider language concordance status. Of 78 participants, 53 % (n = 41) were English-speakers and 47 % (n = 37) were Spanish-speakers. All English-speakers were language-concordant with providers. Of Spanish-speakers, 27 % (n = 10) were Spanish-concordant; 38 % (n = 14) were Spanish-discordant, requiring an interpreter; and 35 % (n = 13) were Spanish mixed-concordant, experiencing both types of communication throughout the care continuum. English-speakers focused on communication barriers, and difficulty understanding jargon arose as a theme. Spanish-speakers emphasized communication facilitators related to Spanish language use. Themes among all Spanish-speaking sub-groups included appreciation for language support resources and preference for Spanish-speaking providers. Mixed-concordant participants accounted for the majority of Spanish-speakers who reported communication barriers. Our data suggest that, although perception of patient-provider communication may depend on the language spoken throughout the care continuum, jargon is lost when health information is communicated in Spanish. Further, the respective consistency of language concordance or interpretation may play a role in patient perception of patient-provider communication.

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options.

The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N=55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty-six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty-two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training.

Delays in Cancer Care Among Low-Income Minorities Despite Access.

INTRODUCTION: Narrowing the racial/ethnic and socioeconomic disparities in breast and cervical cancer requires an in-depth understanding of motivation for adherence to cancer screening and follow-up care. To inform patient-centered interventions, this study aimed to identify reasons why low-income women adhered to or delayed breast or cervical cancer screening, follow-up and treatment despite access to cancer care-related services. METHODS: Semistructured qualitative interviews were conducted among women with access to cancer care-related services receiving care at an academic cancer center, federally qualified health centers, or free clinics in the Chicago metropolitan area. Transcripts were coded and analyzed for themes related to rationales for adherence. RESULTS: Among 138 participants, most were African American (46%) or Hispanic (36%), English speaking (70%), and between ages 41 and 65 years (64%). Primary drivers of nonadherence included lack of knowledge of resources, denial or fear, competing obligations, and embarrassment. Facilitators included abnormality identification, patient activation, provider-initiated actions, and motivation from family or friends. CONCLUSIONS: Interventions targeting increased adherence to care among low-income and ethnic minority women should direct efforts to proactive, culturally and patient-informed education that enables patients to access resources and use the health care system, address misconceptions about cancer, ensure health care providers' communication of screening guidelines, and leverage the patient's social support network.

What women want: patient recommendations for improving access to breast and cervical cancer screening and follow-up.

BACKGROUND: The patient voice remains underrepresented in clinical and public health interventions. To inform interventions that strive to improve access to breast and cervical cancer screening and follow-up among low-income populations, we explored recommendations from low-income women pursuing health care in the safety net. METHODS: Semi-structured interviews were conducted among women receiving follow-up care for an abnormal breast or cervical cancer screening result or a positive cancer diagnosis in federally qualified health centers, free clinics, or an academic cancer center in the Chicago metropolitan area. FINDINGS: Of the 138 women interviewed in the parent study, 52 women provided recommendations for improving access to screening and follow-up care. Most were between 41 and 65 years old (62%) and African American (60%) or White (25%). Recommendations included strengthening community-based health education with more urgent messaging, strategic partnerships, and active learning experiences to increase patient engagement, which women regarded as a key driver of access. Women also suggested increasing access by way of changes to health care delivery systems and policy, including more direct patient-provider and patient-clinic communications, addressing delays caused by high patient volume, combining preventive services, expanding insurance coverage, and adjusting screening guidelines. CONCLUSIONS: This exploratory study demonstrates important insights from the patient lens that may help to increase the acceptability and efficacy of community and clinical interventions aimed at improving access to breast and cervical cancer screening and follow-up. Further research is needed to identify appropriate integration of patient input into interventions, practice, and policy change.

Path toward economic resilience for family caregivers: mitigating household deprivation and the health care talent shortage at the same time.

Rising costs and a workforce talent shortage are two of the health care industry's most pressing challenges. In particular, serious illnesses often impose significant costs on individuals and their families, which can place families at an increased risk for multigenerational economic deprivation or even an illness-poverty trap. At the same time, family caregivers often acquire a wide variety of health care skills that neither these caregivers nor the health care industry typically use. As these skills are marketable and could be paired with many existing medical certifications, this article describes a possible "path toward economic resilience" (PER) through a program whereby family caregivers could find meaningful employment using their new skills. The proposed program would identify ideal program candidates, assess and supplement their competencies, and connect them to the health care industry. We provide a set of practical steps and recommended tools for implementation, discuss pilot data on the program's appeal and feasibility, and raise several considerations for program development and future research. Our analysis suggests that this PER program could appeal to family caregivers and the health care industry alike, possibly helping to address two of our health care system's most pressing challenges with one solution.