Factors contributing to financial distress in young adults with cancer: Material resources, health, and workplace.

BACKGROUND: Financial distress is a primary concern for young adults with cancer. OBJECTIVE: The aim of this study was to identify material resources, physical and psychological health, and workplace variables that are associated with financial distress in young adult cancer survivors. METHODS: A cross-sectional study was conducted using the Cancer Survivor Employment Needs Survey. Participants were young adults (18-39 years of age) who lived in the United States and had a cancer diagnosis. Multivariable linear regression was used to model relations between financial distress and material resources, physical and psychological health, and workplace variables. RESULTS: Participants (N = 214) were mostly non-Hispanic White (78%), female (79%), and had a mean age of 31 years and 4.6 years post-diagnosis. Material resources, physical and psychological health, and workplace variables were all identified as contributing to study participants' financial distress. Among the young adults surveyed, financial distress was prevalent, and an array of problems were associated with financial distress. CONCLUSION: Oncology and rehabilitation providers should openly discuss finances with YAs with cancer and guide them to resources that can address their financial, benefits, and vocational needs to ultimately improve quality of life.

Barriers to Participation in Workplace Wellness Programs for People With Disabilities.

OBJECTIVE: As workplace wellness programs become increasingly popular, many concerns have been raised that these programs are inaccessible or infringe upon the legal rights of people with disabilities. In response to those concerns, we investigated the experiences of workers with disabilities with barriers to access for workplace wellness programs. METHODS: We disseminated an electronic survey and conducted a descriptive statistical analysis assessing the demographics, behavior, and attitudes of people with disabilities toward workplace wellness programs. RESULTS: We found that the largest barriers to workplace participation are lack of access to careers dominated by large employers who offer more employee benefits and issues regarding barriers to access within those employers. CONCLUSIONS: These findings indicate that there are significant barriers that prevent people with disabilities from fully participating in the workplace.

Responding to the Needs of People with Disabilities in the COVID-19 Pandemic: Community Perspectives from Centers for Independent Living.

Centers for Independent Living (CILs) are federally funded, community-based organizations designed and operated by people with disabilities that provide individual and systems advocacy, peer support, information and referral, independent living skills training, and transition services throughout the U.S. and its territories. Centers for Independent Living therefore offer a rich and detailed perspective on the needs of people with disabilities during the COVID-19 pandemic. In this brief report, we summarize COVID-19-related issues raised by 144 CIL administrators and staff in a national survey conducted in April and May 2020 and discuss their research and policy implications. Respondents voiced concerns about health and safety, long-term supportive services, social isolation, and economic insecurity. In the words of one center director, "The pandemic has pulled back the curtain on the depth of need in our local disability community."

"Starting to Live a Life": Understanding Full Participation for People With Disabilities After Institutionalization.

IMPORTANCE: A key objective of the Americans With Disabilities Act of 1990 (ADA) is community integration; yet, nearly 30 yr later, little is known about the participation of people with disabilities who transition from institutions to the community. OBJECTIVE: To understand how people with disabilities describe full participation after transitioning from an institution to the community and to identify environmental barriers and facilitators to participation during and after this transition. DESIGN: The ADA-Participatory Action Research Consortium (ADA-PARC), a collaboration among researchers, people with disabilities, and community organizations, is implementing a multimethod, participatory action research study of participation among people with disabilities posttransition. This article presents qualitative findings from semistructured interviews collected as part of the larger ADA-PARC project. SETTING: ADA-PARC community partners across the United States. PARTICIPANTS: One hundred fifty-three adults with disabilities. OUTCOMES AND MEASURES: We used a semistructured interview guide to ask participants about their experiences during and after transition to the community. RESULTS: We identified four themes: (1) the process of transition as ongoing rather than a single event, (2) access to everyday occupations as full participation and what fully represents "living a life," (3) environmental barriers to participation, and (4) social identity as participation as the transformative process of moving from the disempowering isolation of the institution to being integrated into the community. CONCLUSIONS AND RELEVANCE: As people with disabilities transition into community settings, they require ongoing supports to facilitate their full, long-term participation. WHAT THIS ARTICLE ADDS: People with disabilities reported that transitioning from institutions to the community was itself not enough to support their full community participation; rather, they viewed transition as an ongoing process, and they needed services and supports to fully participate. Occupational therapy practitioners working in institutional and community settings can partner with local disability advocacy communities to support their clients' sense of identity and self-confidence during and after transition to the community.

Telemedicine barriers and challenges for persons with disabilities: COVID-19 and beyond.

The COVID-19 pandemic has forced a rapid adoption of telemedicine over traditional in-person visits due to social restrictions. While telemedicine improves access and reduces barriers to healthcare access for many, several barriers and challenges remain for persons with disabilities, and novel challenges have been exposed, many of which may persist long-term. The challenges and barriers that need to be systematically addressed include: Infrastructure and access barriers, operational challenges, regulatory barriers, communication barriers and legislative barriers. Persons with disabilities are a vulnerable population and little attention has been placed on their healthcare access during the pandemic. Access and communication during a healthcare encounter are important mediators of outcomes for persons with disabilities. Significant, long-term changes in technological, regulatory, and legislative infrastructure and custom solutions to unique patient and health system needs are required to address these barriers going forward in order to improve healthcare access and outcomes for persons with disabilities.

Satisfaction, safety, and supports: Comparing people with disabilities' insider experiences about participation in institutional and community living.

BACKGROUND: Legislation and court decisions in the United States mandate the right to least restrictive community living and participation for people with disabilities, yet little research has examined differences in participation across institutional and community settings, or over time in the community post-transition. OBJECTIVE: As part of a multi-site participatory action research project examining participation, we examined the differences in quality of life in institutional and community living environments among people with disabilities. METHODS: We conducted surveys with adults with disabilities between 18 and 65 years-old that transitioned from institutions to the community in the United States within the last five years. This paper reports on findings for a diverse sample of 150 participants. RESULTS: We found significant differences between ratings of institutional and community experiences, with increased reports of satisfaction, personal safety, service access, and participation in community settings. We also found significant improvements in community integration and inclusion after transition to community living, although barriers to transportation and activity access often remained. CONCLUSIONS: This study of insider experiences of previously institutionalized people with disabilities illuminates important understandings of community participation, integration, and quality of life for the disability community in the United States.

Knowledge of Legal Protections and Employment-Related Resources Among Young Adults with Cancer.

Purpose: Young adults (aged 18-39 years) who have received a cancer diagnosis can encounter significant barriers in their transition to employment. American young adults' familiarity with federal legislation and resources related to employment is unclear. The study questions included: (1) To what extent do young adults who have had a cancer diagnosis know about legal and programmatic supports that may help to address their employment-related needs and (2) What modes of receiving information about resources to address their employment-related concerns do young adults who have had a cancer diagnosis prefer? Methods: A cross-sectional online survey was conducted with a convenience sample composed of 203 young adults living in the United States, had a cancer diagnosis other than nonmelanoma skin cancer, and were between 18 and 39 years of age. Over half (57.6%) of respondents received a cancer diagnosis at age 24 years or older. The mean age at participation was 30.4. Results: More than half of the sample (57.0%) was familiar with the Americans with Disabilities Act yet many did not know that cancer was a covered condition. Almost 80% of the respondents were not familiar with other federal initiatives with employment protections for people with cancer. Participants preferred in-person trainings and resource fact sheets as the presentation channels, although sociodemographic factors such as employment status were related to preferred delivery methods. Conclusion: These young adults would benefit from additional outreach around federal guidelines concerning employment-related rights and services and programs applicable to young adult cancer survivors.

Disparities in Insurance Coverage, Health Services Use, and Access Following Implementation of the Affordable Care Act: A Comparison of Disabled and Nondisabled Working-Age Adults.

The objective of this study was to assess trends in health insurance coverage, health service utilization, and health care access among working-age adults with and without disabilities before and after full implementation of the Affordable Care Act (ACA), and to identify current disability-based disparities following full implementation of the ACA. The ACA was expected to have a disproportionate impact on working-age adults with disabilities, because of their high health care usage as well as their previously limited insurance options. However, most published research on this population does not systematically look at effects before and after full implementation of the ACA. As the US Congress considers new health policy reforms, current and accurate data on this vulnerable population are essential. Weighted estimates, trend analyses and analytic models were conducted using the 1998-2016 National Health Interview Surveys (NHIS) and the 2014 Medical Expenditure Panel Survey. Compared with working-age adults without disabilities, those with disabilities are less likely to work, more likely to earn below the federal poverty level, and more likely to use public insurance. Average health costs for this population are 3 to 7 times higher, and access problems are far more common. Repeal of key features of the ACA, like Medicaid expansion and marketplace subsidies, would likely diminish health care access for working-age adults with disabilities.

Health Care Professionals and the Employment-Related Needs of Cancer Survivors.

Introduction Individuals diagnosed with cancer look to health care professionals as primary sources of information. This positions staff in oncology settings in an ideal role to inform patients, who continue workforce participation in increasing numbers, about resources that might help them to handle work-related issues related to their oncological symptoms. This article reports on findings from a survey of staff that provide nonmedical services to cancer patients in two Houston area hospital systems. The impetus for this survey was two-fold: the trend in recent years for increasing numbers of cancer survivors to stay in the workforce after or even during treatment, and low levels of awareness that these employees are eligible for protection under the Americans with Disabilities Act of 1990 and its 2008 amendments (ADA Amendments Act of 2008, Pub. L. 110-325, 122 Stat. 3553, 2008; Americans with Disabilities Act, 42 U.S.C. § 12111-17, 2006). The survey assesses perceptions of the effects of cancer on patients' employment status, levels of knowledge about supports to address these employment-related needs, and respondents' preferred modes for information receipt. The latter topic serves the purpose of tailoring training activities to the respondents' informational needs and learning preferences. Methods Data were collected via an online survey administered in two Houston-area hospital systems. This article reports on the findings from 86 respondents. Results Tenure as measured by years in oncology is related positively to level of knowledge about disability-related benefits, legislation and programs (r = .32, P < .01). Respondents with more years in their profession worked with patients whom they reported had a higher number of cancer side effects that "created work difficulties for patients" (r = .24, P < .05). The number of side effects was in turn positively associated with negative effects of the diagnosis at work (r = .27, P < .05). A higher score of negative effects of the cancer diagnosis at work in turn correlated with unwanted consequences of disclosing the cancer at work (r = .36, P < .01). No statistically significant correlations were observed among the variables measuring respondents' reported knowledge of disability-related benefits, laws and programs, their perception of patients' level of understanding of these topics, and reports of patients' receipt of reasonable accommodation. Conclusions Health care professionals who treat cancer patients could benefit from training resources about how survivors might address their employment-related needs, including how to convey that knowledge to their patients. Mentoring programs might also have positive outcomes, since respondents with greater tenure in oncology-related settings reported higher levels of knowledge about disability-related topics.

Representing second opinion requests from primary care within the Brazilian tele-health program: international classification of primary care, second edition.

Standardization of second opinion question-answer pairs with a classification system can be used to facilitate data sharing and reuse. The Brazilian telehealth program faces the problem of representing biomedical knowledge from the primary care second opinion demands generated by rural health care teams. The objective is to determine if one of the medical classification systems has a superior ability to standardize Portuguese-language second opinion question-answer pairs. Data from 2,638 second opinions from 2010 were randomly reduced to a 264 question-answer pair data set. The semantic meaning of the question-answer pairs was manually assigned to an International Classification of Primary Care, Second edition (ICPC2) code. Eight question-answer pairs did not contain sufficient medical semantic meaning to allow for mapping to an ICPC2 code; 53 question-answer pairs did contain sufficient medical semantic meaning for mapping, however an appropriate ICPC2 code did not exist; and 203 question-answer pairs did contain sufficient medical semantic meaning for mapping to an ICPC2 code. A review of the literature indicates that there is no baseline to compare the 77% success rate against.

Listening for footsteps.

The 2001 Coulter Lecture provides an opportunity for the author to reflect on personal experiences with rehabilitation and career development. Anecdotes are presented involving Drs. William Spencer and Howard Rusk; and the author acknowledges and expresses personal gratitude to the American Congress of Rehabilitation Medicine, and to mentors and colleagues. The importance of having an enriched and supportive environment in which to study, practice, and conduct research is emphasized. The author also comments on current issues of personal concern, including: reimbursement structures for rehabilitation services; the psychologic impact on patients and practitioners of pending cure-related interventions; the need for patient outcome research; the need for expanded models of community-based care and services; the need to promote independent living models rather than institutional or nursing home living models; the need to maintain advocacy for disability rights, including the Americans with Disabilities Act; and the need to be informed about and advocate for a United Nations Convention on the Rights of People with Disabilities.