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1.
Support Care Cancer ; 32(5): 288, 2024 Apr 16.
Article in English | MEDLINE | ID: mdl-38622350

ABSTRACT

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.


Subject(s)
COVID-19 , Neoplasms , Humans , COVID-19/prevention & control , Pandemics/prevention & control , Arm , Hospitals , Caregivers/psychology , Neoplasms/therapy , Neoplasms/psychology , Qualitative Research
2.
Disabil Rehabil ; : 1-11, 2023 Sep 06.
Article in English | MEDLINE | ID: mdl-37671804

ABSTRACT

PURPOSE: There is an increased demand among health professions students for disability-focused training. We aimed to characterize the development and structure of a sample of disability electives offered at health professions schools in the United States. MATERIALS AND METHODS: A survey was developed to capture data on the curriculum design of disability electives offered at health professions schools across the United States. The primary outcome measures were elective development, elective structure, learner and instructor demographics, disability inclusion, and evaluation methodologies. A cross-sectional survey study was conducted, during which the survey was distributed to relevant professional societies focused on disability advocacy within healthcare. RESULTS: Data were collected on fifteen disability electives. Most electives were developed within the past four years, and many electives were initiated by students. The structure, duration, and evaluation methodology of electives were highly variable. Most electives took the form of a longer didactic-based course or a shorter clinical experience. All electives involved people with disabilities in some capacity. CONCLUSIONS: Disability electives fill an important gap in disability education at some health professions schools. Elective directors should have an increased focus on assessing student learning and ensuring that people with disabilities are involved in elective design and instruction.


Many healthcare professionals do not feel confident in caring for people with disabilities, and a lack of disability-specific training is likely contributing to this lack of confidence.Disability electives fill an important gap in disability-specific training at some health professions schools.Future research should focus on content standardization, assessment of student learning, and ensuring that people with disabilities are involved in elective design and instruction.An improved understanding of disability electives will assist with the development of future disability-related training for health professions students.

3.
J Pediatr ; 261: 113537, 2023 10.
Article in English | MEDLINE | ID: mdl-37271495

ABSTRACT

OBJECTIVE: To explore the perspectives of parents of undiagnosed children enrolled in genomic diagnosis research regarding their motivations for enrolling their children, their understanding of the potential burdens and benefits, and the extent to which their experiences ultimately aligned with or diverged from their original expectations. STUDY DESIGN: In-depth interviews were conducted with parents, audio-recorded and transcribed. A structured codebook was applied to each transcript, after which iterative memoing was used to identify themes. RESULTS: Fifty-four parents participated, including 17 (31.5%) whose child received a diagnosis through research. Themes describing parents' expectations and experiences of genomic diagnosis research included (1) the extent to which parents' motivations for participation focused on their hope that it would directly benefit their child, (2) the ways in which parents' frustrations regarding the research process confused the dual clinical and research goals of their participation, and (3) the limited clinical benefits parents ultimately experienced for their children. CONCLUSIONS: Our results suggest that parents of undiagnosed children seeking enrollment in genomic diagnosis research are at risk of a form of therapeutic misconception-in this case, diagnostic misconception. These findings indicate the need to examine the processes and procedures associated with this research to communicate appropriately and balance the potential burdens and benefits of study participation.


Subject(s)
Genomics , Parents , Humans , Child , Qualitative Research , Motivation , Professional-Family Relations
4.
Am J Bioeth ; 23(7): 17-26, 2023 07.
Article in English | MEDLINE | ID: mdl-37204146

ABSTRACT

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges.


Subject(s)
Rare Diseases , Social Justice , Humans , United States
5.
JAMA Netw Open ; 6(2): e230484, 2023 02 01.
Article in English | MEDLINE | ID: mdl-36821112

ABSTRACT

Importance: Moral injury and distress (MID), which occurs when individuals have significant dissonance with their belief system and overwhelming feelings of being powerless to do what is believed to be right, has not been explored in the unique population of military surgeons deployed far forward in active combat settings. Deployed military surgeons provide care to both injured soldiers and civilians under command-driven medical rules of engagement (MROE) in variably resourced settings. This practice setting has no civilian corollary for comparison or current specific tool for measurement. Objective: To characterize MID among military surgeons deployed during periods of high casualty volumes through a mixed-methods approach. Design, Setting, and Participants: This qualitative study using convergent mixed methods was performed from May 2020 to October 2020. Participants included US military surgeons who had combat deployments to a far-forward role 2 treatment facility during predefined peak casualty periods in Iraq (2003-2008) and Afghanistan (2009-2012), as identified by purposeful snowball sampling. Data analysis was performed from October 2020 to May 2021. Main Outcomes and Measures: Measure of Moral Distress for Healthcare Professionals (MMD-HP) survey and individual, semistructured interviews were conducted to thematic saturation. Results: The total cohort included 20 surgeons (mean [SD] age, 38.1 [5.2] years); 16 (80%) were male, and 16 (80%) had 0 or 1 prior deployment. Deployment locations were Afghanistan (11 surgeons [55%]), Iraq (9 surgeons [45%]), or both locations (3 surgeons [15%]). The mean (SD) MMD-HP score for the surgeons was 104.1 (39.3). The primary thematic domains for MID were distressing outcomes (DO) and MROE. The major subdomains of DO were guilt related to witnessing horrific injuries; treating pregnant women, children, and US soldiers; and second-guessing decisions. The major subdomains for MROE were forced transfer of civilian patients, limited capabilities and resources, inexperience in specialty surgical procedures, and communication with command. Postdeployment manifestations of MID were common and affected sleep, medical practice, and interpersonal relationships. Conclusions and Relevance: In this qualitative study, MID was ubiquitous in deployed military surgeons. Thematic observations about MID, specifically concerning the domains of DO and MROE, may represent targets for further study to develop an evaluation tool of MID in this population and inform possible programs for identification and mitigation of MID.


Subject(s)
Military Personnel , Stress Disorders, Post-Traumatic , Surgeons , Adult , Female , Humans , Male , Afghanistan/epidemiology , Iraq/epidemiology , Military Personnel/psychology , Stress Disorders, Post-Traumatic/epidemiology , Surgeons/standards , Morals , Psychological Distress
6.
J Genet Couns ; 32(1): 166-181, 2023 02.
Article in English | MEDLINE | ID: mdl-36301246

ABSTRACT

As genetics is increasingly used across clinical settings, there is a need to understand the impact and experiences of diverse patients. This review systematically examined research literature on Latinx experiences with genetic counseling and genetic testing (GC/GT) in the United States, synthesizing key themes and knowledge gaps pertaining to both patient experience and hypothetical scenarios. Findings were based on a systematic search, inclusion, and thematic analysis of 81 empirical peer-reviewed articles published from January 1990 to July 2019 pertaining to Latinx populations and GC/GT. Studies most commonly addressed Latinas' perspectives on GC/GT in prenatal settings or for hereditary breast and ovarian cancer (HBOC). Costs, referrals, and communication were significant barriers to accessing genetic services for many Latinx patients, particularly those with low English proficiency (LEP). Studies highlighted difficulties accessing and communicating in healthcare settings, and how medical context and prior experience with healthcare workers and institutions influenced GC/GT decision-making. Providers' implicit biases about Latinx patients negatively impacted their care and impeded communication. Despite low awareness of cancer GT, Latinx patients often reported interest in learning more about GC/GT or unmet needs for GT discussion and provider involvement. This systematic review identified areas where providers can take action to improve Latinx experiences with GC/GT. Clinicians should elicit and respond to patient preferences about shared decision-making. For patients with low numeracy or LEP, providers should consider tailored educational and communication techniques. Most studies focused on HBOC and prenatal testing, and Latinx patients are heterogeneous, leaving many research questions about Latinx experience with GT/GC in other clinical areas.


Subject(s)
Breast Neoplasms , Genetic Counseling , Hispanic or Latino , Ovarian Neoplasms , Female , Humans , Pregnancy , Breast Neoplasms/diagnosis , Breast Neoplasms/genetics , Genetic Counseling/psychology , Genetic Testing , Patient Preference , United States , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/genetics , Attitude to Health
7.
J Med Internet Res ; 24(12): e42084, 2022 12 21.
Article in English | MEDLINE | ID: mdl-36542454

ABSTRACT

BACKGROUND: Social media provides a potential avenue for genetic counselors to address gaps in access to reliable genetics information for rare disease communities. However, only limited research has examined patient and family attitudes toward engaging with genetic counselors through social media. OBJECTIVE: Our study assessed the attitudes of members of rare disease social media groups toward engaging with genetic counselors through social media, characteristics associated with greater interest, and the benefits and potential pitfalls of various approaches to such engagement. METHODS: We conducted a mixed methods survey of patients and family members recruited from a systematic sample of rare disease Facebook groups. Patient characteristics and their associations with interest in engagement with genetic counselors were evaluated using univariate and bivariate statistics. Responses to open-ended questions were analyzed using thematic content analysis. RESULTS: In total, 1053 individuals from 103 rare disease groups participated. The median overall interest in engaging with genetic counselors on social media was moderately high at 7.0 (IQR 4.0-9.0, range 0-10). No past experience with a genetic counselor was associated with greater interest in engaging with one through social media (µ=6.5 vs 6.0, P=.04). Participants expressed greatest interest (median 9.0, IQR 5.0-10.0) in engagement models allowing direct communication with genetic counselors, which was corroborated by the majority (n=399, 61.3%) of individuals who responded to open-ended questions explicitly stating their interest in 1-on-1 interactions. When asked what forms of support they would request from genetic counselors through social media, participants desired individualized support and information about how to access services. However, participants also expressed concerns regarding privacy and confidentiality. CONCLUSIONS: Patients and family members in rare disease social media groups appear interested in engaging with genetic counselors through social media, particularly for individualized support. This form of engagement on social media is not meant to replace the current structure and content of genetic counseling (GC) services, but genetic counselors could more actively use social media as a communication tool to address gaps in knowledge and awareness about genetics services and gaps in accessible patient information. Although encouraging, concerns regarding privacy and feasibility require further consideration, pointing to the need for professional guidelines in this area.


Subject(s)
Counselors , Social Media , Humans , Rare Diseases , Genetic Counseling/methods , Genetic Counseling/psychology , Family
8.
Front Genet ; 13: 949422, 2022.
Article in English | MEDLINE | ID: mdl-36072659

ABSTRACT

Purpose: Despite recent attention to increasing diversity in clinical genomics research, researchers still struggle to recruit participants from varied sociodemographic backgrounds. We examined the experiences of parents from diverse backgrounds with enrolling their children in clinical genomics research on rare diseases. We explored the barriers and facilitators parents encountered and possible impacts of sociodemographic factors on their access to research. Methods: We utilized semi-structured interviews with parents of children participating in the Undiagnosed Diseases Network. Interview data were analyzed using comparative content analysis. Results: We interviewed 13 Hispanic, 11 non-Hispanic White, four Asian, and two biracial parents. Participants discussed different pathways to clinical genomics research for rare disease as well as how sociodemographic factors shaped families' access. Themes focused on variation in: 1) reliance on providers to access research; 2) cultural norms around health communication; 3) the role of social capital in streamlining access; and 4) the importance of language-concordant research engagement. Conclusion: Our findings suggest that variables beyond race/ethnicity may influence access in clinical genomics research. Future efforts to diversify research participation should consider utilizing varied recruitment strategies to reach participants with diverse sociodemographic characteristics.

11.
Am J Med Genet A ; 188(4): 1088-1101, 2022 04.
Article in English | MEDLINE | ID: mdl-34981646

ABSTRACT

Given the limited therapeutic options for most rare diseases diagnosed through genomic sequencing (GS) and the proportion of patients who remain undiagnosed even after GS, it is important to characterize a broader range of benefits and potential harms of GS from the perspectives of families with diverse sociodemographic characteristics. We recruited parents of children enrolled in the Undiagnosed Diseases Network. Parents completed an in-depth interview, and we conducted a comparative content analysis of the data. Parents (n = 30) were demographically diverse, with 43.3% identifying as Hispanic, 33.3% primarily Spanish-speaking, and widely variable household income and education. Parents reported minimal changes in their child's health status following GS but did report a range of other forms of perceived utility, including improvements in their child's healthcare management and access, in their own psychological well-being, and in disease-specific social connections and research opportunities. Parents who received a diagnosis more frequently perceived utility across all domains; however, disutility also was reported by both those with and without a diagnosis. Impacts depended on multiple mediating factors, including parents' underlying expectations and beliefs, family sociodemographic characteristics, individual disease characteristics, and prior healthcare access. Our study suggests that the perceived utility of GS varies widely among parents and may depend on multiple individual, sociodemographic, and contextual factors that are relevant for pre- and post-GS counseling, for value assessment of GS, and for policymaking related to access to new genomic technologies.


Subject(s)
Genome , Parents , Base Sequence , Child , Chromosome Mapping , Genomics , Humans , Parents/psychology
12.
Genet Med ; 23(12): 2250-2259, 2021 12.
Article in English | MEDLINE | ID: mdl-34282302

ABSTRACT

PURPOSE: Social media may be particularly valuable in research in rare genetic diseases because of the low numbers of patients and the rare disease community's robust online presence. The goal of this systematic review was to understand how social media is currently used in rare disease research and the characteristics of the participants in these studies. METHODS: We conducted a systematic review of six databases to identify studies published in English between January 2004 and November 2020, of which 120 met inclusion criteria. RESULTS: Most studies were observational (n = 114, 95.0%) and cross-sectional (n = 107, 89.2%), and more than half (n = 69, 57.5%) utilized only surveys. Only 101 rare diseases were included across all studies. Participant demographics, when reported, were predominantly female (70.1% ± 22.5%) and white (85.0% ± 11.0%) adult patients and caregivers. CONCLUSION: Despite its potential benefits in rare disease research, the use of social media is still methodologically limited and the participants reached may not be representative of the rare disease population by gender, race, age, or rare disease type. As scholars explore using social media for rare disease research, careful attention should be paid to representativeness when studying this diverse patient community.


Subject(s)
Rare Diseases , Social Media , Adult , Caregivers , Cross-Sectional Studies , Female , Humans , Rare Diseases/genetics
13.
J Genet Couns ; 30(6): 1707-1718, 2021 12.
Article in English | MEDLINE | ID: mdl-34096130

ABSTRACT

Parents of children with undiagnosed conditions struggle to obtain information about how to treat and support their children. It can be particularly challenging to find communities and other parents who share their experiences and can provide emotional and informational support. This study sought to characterize how parents use social media, both throughout the diagnostic odyssey and post-diagnosis, to meet their informational, social, and emotional support needs. We conducted qualitative semi-structured interviews with 14 parents from the Stanford site of the Undiagnosed Diseases Network (UDN), including five whose children had received a diagnosis through study participation. Interview recordings were analyzed using inductive, team-based coding and thematic analysis based in grounded theory using Dedoose qualitative analysis software. Through this process, we identified four key themes related to social media use. First, parents struggled to find the "right" community, often seeking out groups of similar patients based on symptoms or similar conditions. Second, though they found much valuable information through social media about caring for their child, they also struggled to interpret the relevance of the information to their own child's condition. Third, the social support and access to other patients' and families' lived experiences were described as both highly valued and emotionally challenging, particularly in the case of poor outcomes for similar families. Finally, parents expressed the need to balance concerns about their child's privacy with the value of transparency and data sharing for diagnosis. Our results suggest that the needs and experiences of undiagnosed patients and families differ from those with diagnosed diseases and highlight the need for support in best utilizing social media resources at different stages of the diagnostic odyssey.


Subject(s)
Social Media , Child , Family , Humans , Parents/psychology , Qualitative Research , Sequence Analysis , Social Support
14.
Genet Med ; 23(8): 1424-1437, 2021 08.
Article in English | MEDLINE | ID: mdl-33972720

ABSTRACT

PURPOSE: Asian Americans have been understudied in the literature on genetic and genomic services. The current study systematically identified, evaluated, and summarized findings from relevant qualitative and quantitative studies on genetic health care for Asian Americans. METHODS: A search of five databases (1990 to 2018) returned 8,522 unique records. After removing duplicates, abstract/title screening, and full text review, 47 studies met inclusion criteria. Data from quantitative studies were converted into "qualitized data" and pooled together with thematic data from qualitative studies to produce a set of integrated findings. RESULTS: Synthesis of results revealed that (1) Asian Americans are under-referred but have high uptake for genetic services, (2) linguistic/communication challenges were common and Asian Americans expected more directive genetic counseling, and (3) Asian Americans' family members were involved in testing decisions, but communication of results and risk information to family members was lower than other racial groups. CONCLUSION: This study identified multiple barriers to genetic counseling, testing, and care for Asian Americans, as well as gaps in the research literature. By focusing on these barriers and filling these gaps, clinical genetic approaches can be tailored to meet the needs of diverse patient groups, particularly those of Asian descent.


Subject(s)
Asian , Genetic Counseling , Asian/genetics , Family , Humans , Qualitative Research , Racial Groups
15.
AJOB Empir Bioeth ; 12(2): 71, 2021.
Article in English | MEDLINE | ID: mdl-33890840
16.
Genet Med ; 23(5): 837-844, 2021 05.
Article in English | MEDLINE | ID: mdl-33420343

ABSTRACT

PURPOSE: Patients with rare and undiagnosed diseases (RUDs) face significant health challenges, which may be exacerbated during the COVID-19 pandemic. The goal of this study was to identify specific impacts of the pandemic on RUD patients, and targets for improving support and health-care access. METHODS: We conducted an online survey of RUD patients and their family members from 21 April to 8 June 2020, recruited from 76 Facebook groups for RUDs. Questions assessed patient characteristics and impacts of the pandemic on RUD diagnosis and management. RESULTS: Respondents (n = 413), including 274 RUD patients and 139 family members, were predominantly female and white, though income varied. Impacts of the pandemic included (1) barriers to accessing essential health care, (2) specific impacts of restrictive COVID-19 visitation policies on ability to advocate in health-care settings, (3) uncertainty and fear regarding COVID-19 risk, (4) exacerbated physical and mental health challenges, (5) magnified impacts of reduced educational and therapeutic services, and (6) unexpected positive changes due to the pandemic. CONCLUSION: There are specific, serious challenges affecting RUD patients and families during the COVID-19 pandemic. There is an urgent need to develop approaches to mitigate these challenges both during and beyond the pandemic.


Subject(s)
COVID-19 , Undiagnosed Diseases , Female , Humans , Mental Health , Pandemics , SARS-CoV-2
17.
Genet Med ; 22(11): 1830-1837, 2020 11.
Article in English | MEDLINE | ID: mdl-32601388

ABSTRACT

PURPOSE: Advances in gene therapy and precision medicine have led to a growing number of novel treatments for rare genetic diseases. Patients/families may lack access to up-to-date, accurate, and relevant information about these treatments. Social media offers one potentially important resource for these communities. Our goal was to understand how patients/families with spinal muscular atrophy (SMA)-a rare genetic condition-used social media to share, consume, and evaluate information about the novel treatment nusinersen (Spinraza) following the drug's approval. METHODS: We conducted qualitative, semistructured interviews with 20 SMA patients or parents of patients, deriving themes and subthemes through content and thematic network analysis. Participants also completed a demographic survey. RESULTS: Participants described leveraging social media to learn about nusinersen treatment, make informed treatment decisions, and advocate for/access treatment. They also described critically evaluating the trustworthiness of nusinersen-related information on social media and the privacy risks of social media use. CONCLUSION: Patients/families used social media to navigate the new and dynamic landscape of nusinersen treatment for SMA, while attempting to mitigate misinformation and privacy risks. As new treatments become available, providers and patients/families may benefit from proactively discussing social media use, so as to maximize important benefits while minimizing risks.


Subject(s)
Muscular Atrophy, Spinal , Social Media , Humans , Muscular Atrophy, Spinal/drug therapy , Parents , Qualitative Research , Rare Diseases/drug therapy
18.
Ann Intern Med ; 173(3): 188-194, 2020 08 04.
Article in English | MEDLINE | ID: mdl-32330224

ABSTRACT

BACKGROUND: The coronavirus disease 2019 pandemic has or threatens to overwhelm health care systems. Many institutions are developing ventilator triage policies. OBJECTIVE: To characterize the development of ventilator triage policies and compare policy content. DESIGN: Survey and mixed-methods content analysis. SETTING: North American hospitals associated with members of the Association of Bioethics Program Directors. PARTICIPANTS: Program directors. MEASUREMENTS: Characteristics of institutions and policies, including triage criteria and triage committee membership. RESULTS: Sixty-seven program directors responded (response rate, 91.8%); 36 (53.7%) hospitals did not yet have a policy, and 7 (10.4%) hospitals' policies could not be shared. The 29 institutions providing policies were relatively evenly distributed among the 4 U.S. geographic regions (range, 5 to 9 policies per region). Among the 26 unique policies analyzed, 3 (11.3%) were produced by state health departments. The most frequently cited triage criteria were benefit (25 policies [96.2%]), need (14 [53.8%]), age (13 [50.0%]), conservation of resources (10 [38.5%]), and lottery (9 [34.6%]). Twenty-one (80.8%) policies use scoring systems, and 20 of these (95.2%) use a version of the Sequential Organ Failure Assessment score. Among the policies that specify the triage team's composition (23 [88.5%]), all require or recommend a physician member, 20 (87.0%) a nurse, 16 (69.6%) an ethicist, 8 (34.8%) a chaplain, and 8 (34.8%) a respiratory therapist. Thirteen (50.0% of all policies) require or recommend that those making triage decisions not be involved in direct patient care, but only 2 (7.7%) require that their decisions be blinded to ethically irrelevant considerations. LIMITATION: The results may not be generalizable to institutions without academic bioethics programs. CONCLUSION: Over one half of respondents did not have ventilator triage policies. Policies have substantial heterogeneity, and many omit guidance on fair implementation. PRIMARY FUNDING SOURCE: None.


Subject(s)
Coronavirus Infections/therapy , Pneumonia, Viral/therapy , Respiration, Artificial/ethics , Respiration, Artificial/standards , Triage/ethics , Triage/standards , Betacoronavirus , Bioethics , COVID-19 , Health Policy , Hospitals , Humans , Pandemics , SARS-CoV-2 , Surveys and Questionnaires , United States , Ventilators, Mechanical/supply & distribution
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