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1.
Cancer ; 128(5): 1038-1047, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-34855208

RESUMO

BACKGROUND: The objective of this randomized trial was to evaluate the short-term effect of bilingual written and interpersonal education regarding mammographic breast density (MBD). METHODS: Latinas aged 40 to 74 years who were presenting for screening mammography were recruited and randomized 1:1:1 to receive a letter with their mammogram and MBD results (usual care [UC]), a letter plus a brochure (enhanced care [ENH]), or a letter plus a brochure and telephonic promotora education (interpersonal care [INT]). Surveys were administered at enrollment (T0 ) and 2 weeks to 6 months after intervention delivery (T1 ). Differences were assessed with χ2 , Kruskal-Wallis, and McNemar tests and pairwise comparisons as appropriate. INT metrics and audio recordings were analyzed with descriptive statistics and qualitative content analysis. RESULTS: Between October 2016 and October 2019, 943 of 1108 Latina participants (85%) completed both surveys. At T1 , INT participants were more likely (P < .001) to report seeing their MBD results in the letter (70.2%) than UC (53.1%) or ENH participants (55.1%). The percentage of INT women who reported speaking with a provider about MBD (29.0%) was significantly greater (P < .001) than the percentage of UC (14.7%) or ENH participants (15.6%). All groups saw significant (P < .001) but nondifferential improvements in their knowledge of MBD as a masking and risk factor. In the INT group, the promotora delivered education to 77.1% of the 446 participants randomized to INT and answered questions at 28.3% of the encounters for an average of $4.70 per participant. CONCLUSIONS: Among Latinas in a low-resource setting, MBD knowledge may increase with written or interpersonal education, but with modest investment, interpersonal education may better improve MBD awareness and prompt patient-provider discussions.


Assuntos
Densidade da Mama , Neoplasias da Mama , Adulto , Idoso , Detecção Precoce de Câncer , Feminino , Hispânico ou Latino , Humanos , Mamografia , Pessoa de Meia-Idade
2.
J Med Genet ; 56(5): 317-324, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30580287

RESUMO

PURPOSE: We assessed the decision-making of individuals pursuing genomic sequencing without a requirement for pretest genetic counselling. We sought to describe the extent to which individuals who decline genetic counselling reported decisional conflict or struggled to make a decision to pursue genomic testing. METHODS: We administered a 100-item survey to 3037 individuals who consented to the Return of Actionable Variants Empirical study, a genomic medicine implementation study supported by the National Institutes of Health (USA) eMERGE consortium. The primary outcomes of interest were self-reported decisional conflict about the decision to participate in the study and time required to reach a decision. RESULTS: We received 2895 completed surveys (response rate=95.3%), and of these respondents 97.8% completed the decisional conflict scale in its entirety. A majority of individuals (63%) had minimal or no decisional conflict about the pursuit of genomic sequencing and were able to reach a decision quickly (78%). Multivariable logistic regression analyses identified several characteristics associated with decisional conflict, including lower education, lower health literacy, lower self-efficacy in coping, lack of prior experience with genetic testing, not discussing study participation with a family member or friend, and being male. CONCLUSION: As genomic sequencing is used more widely, genetic counselling resources may not be sufficient to meet demand. Our results challenge the notion that all individuals need genetic counselling in order to make an informed decision about genomic sequencing.


Assuntos
Aconselhamento Genético , Testes Genéticos , Genômica , Adulto , Idoso , Tomada de Decisões , Feminino , Testes Genéticos/métodos , Genômica/métodos , Pesquisas sobre Atenção à Saúde , Sequenciamento de Nucleotídeos em Larga Escala , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
3.
Am J Transplant ; 19(5): 1498-1506, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30417522

RESUMO

Short-term studies have demonstrated that nondirected donors (NDDs) have psychosocial outcomes that are similar to donors who donate directly, but long-term studies have not been done. NDDs at our center were surveyed regarding motivation; support during donation; stress related to donation; regret; financial resources used for donation; preferences about communication with the recipient; and cost reimbursement. Of 100 NDDs who donated at our center in the last 20 years, 95 remain in contact with us, and 77 responded to our survey (mean ± standard deviation [SD] 6.7 ± 4 years postdonation). The most common motivation for donation was the desire to help another (99%). Many NDDs received support from family, friends, and employers. NDDs voiced stress about the possibility of recipient kidney rejection, physical consequences to themselves, and financial burden. Only one donor expressed regret. Almost half wanted some recipient information at donation; 61% preferred routine recipient status updates; 56% believed meeting the recipient should occur at any mutually agreeable time; and 55% endorsed reimbursement for expenses. Stressors for NDDs are analogous to those of directed donors; NDDs prefer having some information about the recipient and prefer to be given a choice regarding the timing for communication with the recipient. NDDs supported donation being financially neutral.


Assuntos
Transplante de Rim/psicologia , Doadores Vivos/psicologia , Motivação , Estresse Psicológico , Obtenção de Tecidos e Órgãos/métodos , Adulto , Emoções , Feminino , Seguimentos , Custos de Cuidados de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Psicologia , Apoio Social , Inquéritos e Questionários , Adulto Jovem
4.
Genet Med ; 21(11): 2468-2477, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-30992552

RESUMO

PURPOSE: This study examined whether participants who learned research results related to a germline CDKN2A variant known to be associated with increased risk of pancreatic cancer and malignant melanoma would pursue confirmatory testing and cancer screening, share the genetic information with health care providers and family, and change risk perceptions. METHODS: Participants were pancreas research registry enrollees whose biological sample was tested in a research laboratory for the variant. In total, 133 individuals were invited to learn a genetic research result and participate in a study about the disclosure process. Perceived cancer risk, screening intentions, and behaviors were assessed predisclosure, immediately postdisclosure, and six months postdisclosure. RESULTS: Eighty individuals agreed to participate and 63 completed the study. Immediately postdisclosure, carriers reported greater intentions to undergo pancreatic cancer and melanoma screening (p values ≤0.024). Seventy-three percent of carriers (47.5% noncarriers) intended to seek confirmatory testing within six months and 20% (2.5% noncarriers) followed through. All participants shared results with ≥1 family member. More carriers shared results with their health care provider than noncarriers (p = 0.028). CONCLUSION: Recipients of cancer genetic research results may not follow through with recommended behaviors (confirmatory testing, screening), despite stated intentions. The research result disclosure motivated follow-up behaviors among carriers more than noncarriers.


Assuntos
Predisposição Genética para Doença/psicologia , Melanoma/psicologia , Neoplasias Pancreáticas/psicologia , Adulto , Idoso , Inibidor p16 de Quinase Dependente de Ciclina/genética , Inibidor p16 de Quinase Dependente de Ciclina/metabolismo , Revelação , Família , Feminino , Aconselhamento Genético/psicologia , Testes Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de Risco
5.
Sex Health ; 16(2): 198-199, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30678749

RESUMO

Little is known about whether adolescent participation in sexual health research prompts adolescents and parents to have conversations about sensitive topics. One year after being presented with a hypothetical microbicide safety study, 248 adolescent-parent dyads were asked about conversations they may have had after their initial study visit. Sixty-three per cent of adolescents and 82% of parents reported having a conversation about the study. A launching conversation about broader topics (e.g. risk behaviours) was reported by 8% of adolescents and 17% of parents. Because there is evidence that conversations are occurring, researchers could provide guidance to help facilitate potentially sensitive discussions.


Assuntos
Atitude Frente a Saúde , Comunicação , Relações Pais-Filho , Pesquisa , Saúde Sexual , Adolescente , Ensaios Clínicos como Assunto , Feminino , Humanos , Masculino
6.
Health Expect ; 21(6): 981-989, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-29655265

RESUMO

OBJECTIVE: This study employs the concept of relational autonomy to understand how relational encounters with family members (FMs) and care providers may shape decisions around ovarian cancer patients' clinical trial (CT) participation. The study also offers unique insights into how FMs view patients' decision making. METHODS: In-depth interviews were conducted with 33 patients with ovarian cancer who had been offered a CT and 39 FMs. Data were inductively analysed using a thematic approach and deductively informed by constructs derived from the theory of relational autonomy (RA). RESULTS: Patients' relationships, experiences and social status were significant resources that shaped their decisions. Patients did not give equal weight to all relationships and created boundaries around whom to include in decision making. Doctors' recommendations and perceived enthusiasm were described as influential in CT decisions. Both patients with ovarian cancer and their FMs maintained that patients have the "final say," indicating an individualistic autonomy. However, maintaining the "final say" in the decision-making process is constitutive of patients' relationships, emphasizing a relational approach to autonomy. FMs support patients' autonomy and they do so particularly when they believe the patient is capable of making the right choices. CONCLUSIONS: Although ethical principles underlying informed consent for CT participation emphasize individual autonomy, greater attention to relational autonomy is warranted for a more comprehensive understanding of CT decision making.


Assuntos
Comportamento de Escolha , Ensaios Clínicos como Assunto , Consentimento Livre e Esclarecido/ética , Neoplasias Ovarianas/terapia , Participação do Paciente , Autonomia Pessoal , Tomada de Decisões/ética , Família/psicologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Pesquisa Qualitativa
7.
J Health Commun ; 23(3): 299-305, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29474124

RESUMO

This study describes the use of the Internet for health information research by patients attending a gynecologic oncology practice and examines the association between its use and anxiety. A self-administered survey assessed patients' demographic information and Internet use. The Hospital Anxiety and Depression Scale (HADS) and the State-Trait Anxiety Inventory (STAI) were administered concurrently. Of 212 patients who consented to the study, 98 (46%) had an appointment because of a cancer diagnosis. Of 199 respondents, 91 (46%) reported searching the Internet for information about their condition. Internet searching was unassociated with race/ethnicity and positively associated with education level, annual household income, and married/partnered civil status. Only 16% of the patients reported that a health-care provider recommended use of the Internet for research. Comparing patients who used the Internet for research with those who did not, the STAI state and trait anxiety scores were similar. The HADS anxiety subscale score was higher for those who used the Internet versus those who did not, which suggests heightened anxiety. Internet use for research is common in gynecologic oncology patients, and its use is associated with increased anxiety. Physicians can use this medium to educate patients about their disease, build trust, and alleviate fear.


Assuntos
Ansiedade/diagnóstico , Informação de Saúde ao Consumidor/estatística & dados numéricos , Neoplasias dos Genitais Femininos/terapia , Comportamento de Busca de Informação , Internet/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Neoplasias dos Genitais Femininos/psicologia , Humanos , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Adulto Jovem
8.
Psychooncology ; 26(3): 346-353, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-26643586

RESUMO

OBJECTIVE: The objectives were to assess the feasibility of using a novel, comprehensive chaplain-led spiritual life review interview to develop a personal Spiritual Legacy Document (SLD) for persons with brain tumors and other neurodegenerative diseases and to describe spiritual well-being (SWB), spiritual coping, and quality of life (QOL) of patients and their support persons (SP) before and after receipt of the SLD. METHODS: Patient-SP pairs were enrolled over a 2-year period. Assessments included the Functional Assessment of Chronic Illness Therapy-Spiritual Expanded Version, Brief Religious Coping Scale, Brief COPE Inventory, and QOL Linear Analog Scale. Baseline assessments were completed prior to an audio-recorded spiritual life review interview with a chaplain. RESULTS: Thirty-two patient/SP pairs were enrolled; 27 completed baseline assessments and the interview. Twenty-four reviewed their SLD and were eligible for follow-up. A total of 15 patients and 12 SPs completed the 1-month follow-up; 10 patients and seven SPs completed the 3-month follow-up. Patients endorsed high levels of SWB and spiritual coping at baseline. Both patients and SPs evidenced improvement on several aspects of SWB, spiritual coping, and QOL at 1 month, but patients' decreased financial well-being was also observed. Patients and SPs demonstrated favorable changes in peacefulness and positive religious coping at both time points. CONCLUSIONS: A chaplain-led spiritual life review is a feasible intervention for patients with neurodegenerative disease and results in beneficial effects on patients and SPs. Copyright © 2015 John Wiley & Sons, Ltd.


Assuntos
Neoplasias Encefálicas/psicologia , Qualidade de Vida/psicologia , Apoio Social , Espiritualidade , Adaptação Psicológica , Adulto , Idoso , Neoplasias Encefálicas/terapia , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Religião e Medicina , Religião e Psicologia
9.
BMC Health Serv Res ; 17(1): 706, 2017 Nov 09.
Artigo em Inglês | MEDLINE | ID: mdl-29121920

RESUMO

BACKGROUND: Communication between patients with limited English proficiency (LEP) and telephone triage services has not been previously explored. The purpose of this study was to determine the utilization characteristics of a primary care triage call center by patients with LEP. METHODS: This was a retrospective cohort study of the utilization of a computer-aided, nurse-led telephone triage system by English proficiency status of patients empaneled to a large primary care practice network in the Midwest United States. Interpreter Services (IS) need was used as a proxy for LEP. RESULTS: Call volumes between the 587 adult patients with LEP and an age-frequency matched cohort of English-Proficient (EP) patients were similar. Calls from patients with LEP were longer and more often made by a surrogate. Patients with LEP received recommendations for higher acuity care more frequently (49.4% versus 39.0%; P < 0.0004), and disagreed with recommendations more frequently (30.1% versus 20.9%; P = 0.0004). These associations remained after adjustment for comorbidities. Patients with LEP were also less likely to follow recommendations (60.9% versus 69.4%; P = 0.0029), even after adjusting for confounders (adjusted odds ratio [AOR] = 0.65; 95% confidence interval [CI], 0.49, 0.85; P < 0.001). CONCLUSION: Patients with LEP who utilized a computer-aided, nurse-led telephone triage system were more likely to receive recommendations for higher acuity care compared to EP patients. They were also less likely to agree with, or follow, recommendations given. Additional research is needed to better understand how telephone triage can better serve patients with LEP.


Assuntos
Barreiras de Comunicação , Idioma , Telefone/estatística & dados numéricos , Triagem/métodos , Adolescente , Adulto , Idoso , Compreensão , Emigrantes e Imigrantes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Refugiados , Estudos Retrospectivos , Estados Unidos , Adulto Jovem
10.
Clin Trials ; 13(6): 660-664, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27353282

RESUMO

BACKGROUND/AIMS: Some of the most promising avenues of cancer clinical investigation center on immunotherapeutic approaches. These approaches have provided notable gains in cancer therapeutics with recent Food and Drug Administration approvals of agents of this class in several types of cancers, although gains for ovarian cancer lag behind. This study examined perceptions of therapeutic trials including immunotherapy and virotherapy among ovarian cancer patients and their family members. METHODS: A total of 72 semi-structured qualitative interviews were conducted with 33 patients and 39 family members at two National Cancer Institute-designated comprehensive cancer centers. Eligible patients were diagnosed with epithelial ovarian, primary peritoneal, or fallopian tube carcinoma and had experience with clinical trial conversations; family members were nominated by patients and interviewed separately. Applied thematic analysis was used to understand and interpret the data. RESULTS: More participants were aware of vaccine trials than virus trials, although more than half had heard of at least one of them. Initial reactions to vaccine trials were generally favorable. For many, childhood experience with vaccines lent a familiar frame of reference. Virus trials elicited more negative initial reactions, including the use of adjectives such as "scary" and "dreadful." Viruses seemed contagious or difficult to control. Increased receptivity to these trials occurred in the context of limited therapeutic options and cancer recurrence. Most participants, including those not immediately drawn to these types of trials, indicated openness to learning more. CONCLUSION: Although vaccine and viral trials are both immunologically based therapeutic approaches, patients who are offered these trials may perceive their potential benefit and safety quite differently. There is a need to consider terminology, solicit and address "gut reactions," and provide information that enables patients and their family members to better understand the science behind these trials.


Assuntos
Vacinas Anticâncer/uso terapêutico , Família , Conhecimentos, Atitudes e Prática em Saúde , Terapia Viral Oncolítica/métodos , Neoplasias Ovarianas/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Saúde , Ensaios Clínicos como Assunto , Feminino , Humanos , Imunoterapia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
11.
J Health Commun ; 21(5): 527-33, 2016 05.
Artigo em Inglês | MEDLINE | ID: mdl-27077665

RESUMO

This study examined the effect of message framing on African American women's intention to participate in health-related research and actual registration in ResearchMatch (RM), a disease-neutral, national volunteer research registry. A community-engaged approach was used involving collaboration between an academic medical center and a volunteer service organization formed by professional women of color. A self-administered survey that contained an embedded message framing manipulation was distributed to more than 2,000 African American women attending the 2012 national assembly of The Links, Incorporated. A total of 391 surveys were completed (381 after exclusion: 187 containing the gain-framed message and 194 containing the loss-framed message). The majority (57%) of women expressed favorable intentions to participate in health-related research, and 21% subsequently enrolled in RM. The effect of message framing on intention was moderated by self-efficacy. There was no effect of message framing on RM registration; however, those with high self-efficacy were more than 2 times as likely as those with low self-efficacy to register as a potential study volunteer in RM (odds ratio = 2.62, 95% confidence interval [1.29, 5.33]). This investigation makes theoretical and practical contributions to the field of health communication and informs future strategies to meaningfully and effectively include women and minorities in health-related research.


Assuntos
Pesquisa Biomédica , Negro ou Afro-Americano/psicologia , Comunicação em Saúde/métodos , Intenção , Sujeitos da Pesquisa/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Idoso , Estudos Transversais , Feminino , Humanos , Pessoa de Meia-Idade , Sujeitos da Pesquisa/estatística & dados numéricos , Autoeficácia , Inquéritos e Questionários
12.
Oncology ; 88(4): 208-13, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25502607

RESUMO

PURPOSE: This trial was undertaken (1) to determine the feasibility of enrolling asymptomatic ovarian cancer patients with CA-125 elevation in a trial with the protein kinase C iota (PKCι) inhibitor auranofin and (2) to understand patients' perceptions of CA-125 monitoring. METHODS: Asymptomatic ovarian cancer patients with CA-125 elevation received 3 mg auranofin orally twice per day and were evaluated. The patients participated in interviews about CA-125 monitoring. RESULTS: Ten patients were enrolled in slightly over 6 months, exceeding our anticipated accrual rate. Four manifested stable CA-125 levels for 1 month or longer. The median progression-free survival was 2.8 months (95% CI: 1.3-3.8); auranofin was well tolerated. One patient had baseline and monthly CA-125 levels of 5,570, 6,085, 3,511, and 2,230 U/ml, respectively, stopped auranofin because of radiographic progression at 3 months, and manifested an increase in CA-125 to 7,168 U/ml approximately 3 months later. Patient interviews revealed (1) the important role of CA-125 in cancer monitoring, (2) ardent advocacy of CA-125 testing, and (3) an evolution toward CA-125 assuming a life of its own. CONCLUSIONS: This study showed the feasibility of enrolling asymptomatic ovarian cancer patients with CA-125 elevation in a trial with auranofin. One patient had a decline in CA-125, suggesting that PKCι inhibition merits further study in ovarian cancer.


Assuntos
Antirreumáticos/uso terapêutico , Auranofina/uso terapêutico , Isoenzimas/antagonistas & inibidores , Neoplasias Ovarianas/tratamento farmacológico , Proteína Quinase C/antagonistas & inibidores , Administração Oral , Idoso , Idoso de 80 Anos ou mais , Biomarcadores Tumorais/metabolismo , Antígeno Ca-125/metabolismo , Esquema de Medicação , Estudos de Viabilidade , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Neoplasias Ovarianas/enzimologia , Neoplasias Ovarianas/patologia , Projetos Piloto , Prognóstico , Taxa de Sobrevida
13.
Support Care Cancer ; 22(9): 2517-25, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24728620

RESUMO

PURPOSE: Cancer is a shared family experience and may provide a "teachable moment" to motivate at-risk family members to adopt cancer prevention and health promotion behaviors. This study explored how a diagnosis of colorectal cancer (CRC) is experienced by family members and may be used to develop a family-based CRC prevention program. Preferences regarding content, timing, and modes of program delivery were examined. Social cognitive theory provided the conceptual framework for the study. METHODS: This study employed mixed methodology (semi-structured interviews and self-report questionnaires). Participants included 73 adults (21 patients, 52 family members) from 23 families (two patients were deceased prior to being interviewed). Most patients (n = 14; 67 %) were interviewed 1-5 years post-diagnosis. Individual interviews were audio-recorded, transcribed, and content analyzed. RESULTS: For many, a CRC diagnosis was described as a shared family experience. Family members supported each other's efforts to prevent CRC through screening, exercising, and maintaining a healthy diet. Teachable moments for introducing a family-based program included the time of the patient's initial cancer surgery and post-chemotherapy. Reported willingness to participate in a family-based program was associated with risk perception, self-efficacy, outcome expectancies, and the social/community context in which the program would be embedded. Program preferences included cancer screening, diet/nutrition, weight management, stress reduction, and exercise. Challenges included geographic dispersion, variation in education levels, generational differences, and scheduling. CONCLUSIONS: CRC patients and family members are receptive to family-based programs. Feasibility concerns, which may be mitigated but not eliminated with technological advances, must be addressed for successful family-based programs.


Assuntos
Neoplasias Colorretais/prevenção & controle , Neoplasias Colorretais/psicologia , Família/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Serviços Preventivos de Saúde , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/epidemiologia , Detecção Precoce de Câncer , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Autoeficácia , Inquéritos e Questionários , Adulto Jovem
14.
Fam Pract ; 31(5): 598-606, 2014 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25080507

RESUMO

BACKGROUND: Extensive family coping research has been conducted among breast cancer, prostate cancer and melanoma with lesser emphasis on the coping experiences of colorectal cancer (CRC) patients and their family members. OBJECTIVE: To examine ways in which patients and their family members cope with the diagnosis of CRC. METHODS: A total of 73 participants (21 patients, 52 family members) from 23 families described their experiences during and after a CRC diagnosis, including their coping experiences with the diagnosis. Data from semi-structured interviews were audio recorded and transcribed. The data were analyzed utilizing content analysis with inductive coding methods. RESULTS: Eight major themes were identified: positive reframing, holding on to a sense of normalcy, religion and spirituality, joining a group, creating awareness of CRC, lifestyle change, seeking information and alternative treatments. Maintaining an emotional sense of normalcy through positive thinking, engaging in activities to take one's mind off the diagnosis and believing that there is a higher authority which has control over the diagnosis and life were vital for the patients and their family members. Patients and family members used similar coping strategies. CONCLUSION: Findings from this study have implications for understanding how families blend emotion-based and problem-focused coping strategies in the face of a CRC diagnosis. Further developing evidence-based interventions that target coping and well-being in cancer patients and extending them to family members is necessary and holds great promise for providers who care for patients with familial cancers.


Assuntos
Adaptação Psicológica , Neoplasias Colorretais/psicologia , Núcleo Familiar/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Ensaios Clínicos como Assunto , Neoplasias Colorretais/diagnóstico , Suplementos Nutricionais , Emoções , Feminino , Educação em Saúde , Humanos , Comportamento de Busca de Informação , Entrevistas como Assunto , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Grupos de Autoajuda , Espiritualidade , Adulto Jovem
15.
Sex Transm Dis ; 39(1): 28-31, 2012 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-22183842

RESUMO

BACKGROUND: Developing effective and safe microbicides requires study procedures (e.g., technology used, abstinence requirements, and product use) that are acceptable to participants. METHODS: Thirty women completed 4 study visits including pelvic examination, colposcopy, optical coherence tomography (OCT), and semistructured, qualitative interviews. Additional requirements included abstinence (for approximately 16 days) and twice daily vaginal product use (for 5.5 days). Interviews were audio-recorded, transcribed, and analyzed using framework analysis. Themes addressing OCT experiences, acceptability of abstinence, and vaginal product use were examined. RESULTS: OCT was viewed favorably as an imaging technology. Some women reported feeling the fiber-optic probe "poking" them and more than one-third spontaneously reported feeling pressure or pinching upon rotation of the speculum in connection with the OCT evaluation. Compliance with vaginal gel use was high, but for many women assigned to use a product containing nonoxynol-9 (vs. placebo), the postproduct use examination was more uncomfortable, relative to the initial examination or 1 week following product discontinuation. Nearly all women experienced product leakage; acceptability of leakage varied. Two women were not abstinent and several more found abstinence challenging. Some women involved their partner in decision making regarding trial enrollment. Strategies to remain abstinent included participating when the partner was away, avoiding early intimacy, and engaging in alternative sexual activities. CONCLUSIONS: Qualitative interviews in early-phase studies provide insights and capture information that would be missed by behavioral inference alone. Understanding participant's experiences is important in order to provide anticipatory guidance and plan future microbicide studies that facilitate adherence with trial requirements.


Assuntos
Anti-Infecciosos/administração & dosagem , Abstinência Sexual/psicologia , Tomografia de Coerência Óptica/métodos , Administração Intravaginal , Adulto , Anti-Infecciosos/efeitos adversos , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Nonoxinol/administração & dosagem , Nonoxinol/efeitos adversos , Cooperação do Paciente , Satisfação do Paciente , Segurança , Comportamento Sexual , Tensoativos/administração & dosagem , Tensoativos/efeitos adversos , Cremes, Espumas e Géis Vaginais/administração & dosagem , Cremes, Espumas e Géis Vaginais/efeitos adversos , Adulto Jovem
16.
J Community Health ; 36(6): 992-8, 2011 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-21461762

RESUMO

Few studies have focused on perceptions of healthcare among Vietnamese who came to the United States (US) as refugees. A 48-item survey that included information on demographics, health status, and satisfaction with healthcare [including the Patient Satisfaction Questionnaire-18 (PSQ-18)] was sent to 49 former Vietnamese military officers, who are now living in the US, based on their current geographic residence. A total of 22 of 49 delivered questionnaires were completed and returned, yielding a response rate of 45%. The survey was sent in Vietnamese and English, and all except one was completed in Vietnamese. In response to "Language barriers have prevented me from accessing health care when I need it," 77% of respondents acknowledged that this was "sometimes" the case even today. Most respondents otherwise viewed the healthcare system favorably, but cost concerns were an issue: 28% strongly agreed or agreed with the statement, "I have to pay for more of my medical care than I can afford." In contrast, only 9% described that they would have strongly agreed or agreed to this statement upon first arriving to the US. Write-in comments revealed themes that centered on language barriers, favorable impressions of healthcare in the US, financial concerns, and patriotism towards the US. Further study of this aging population of Vietnamese Americans might help shed light on concerns faced by other refugee populations who have arrived more recently.


Assuntos
Atitude Frente a Saúde/etnologia , Satisfação do Paciente/etnologia , Qualidade da Assistência à Saúde/normas , Refugiados/psicologia , Barreiras de Comunicação , Estudos Transversais , Feminino , Gastos em Saúde , Acessibilidade aos Serviços de Saúde/economia , Acessibilidade aos Serviços de Saúde/tendências , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Masculino , Satisfação do Paciente/estatística & dados numéricos , Qualidade da Assistência à Saúde/economia , Refugiados/estatística & dados numéricos , Inquéritos e Questionários , Estados Unidos/epidemiologia , Veteranos/psicologia , Veteranos/estatística & dados numéricos , Vietnã/etnologia
17.
J Clin Transl Sci ; 5(1): e125, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34367670

RESUMO

Novel endometrial cancer (EC) early-detection approaches may reduce racial disparities in mortality. We conducted six community-based focus groups with White and Black women (N = 57 participants) in February-March 2020 to explore acceptability of a home-based tampon sampling approach for EC. Participants also completed a survey. Data were analyzed using qualitative content analysis. Awareness of EC and risk factors was low. Acceptability regarding home sampling was high, but participants expressed concerns about instruction complexity and potential risks. Black women reported lower comfort with tampons. Increasing EC awareness, self-efficacy, and familiarization with tampons would advance prospects for at-home sample collection for EC testing.

18.
J Community Genet ; 11(4): 433-443, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32562160

RESUMO

The lack of data on perspectives of racial and ethnic minority populations regarding family disclosure of individual research results (IRR) hinders the development of return of IRR policies and practices that are meaningful and culturally appropriate in diverse populations. This research aims to uncover preferences regarding family disclosure of IRR and identify factors that may shape the preferences in three minority populations. Nine focus groups with 68 adult African American, Hispanic/Latinx, and American Indian/Alaska Native individuals were conducted. Data were analyzed using thematic analysis. Participants were willing to share IRR with relatives who elected to know and preferred a participant-driven (vs. researcher-driven) decision-making process. Privacy of personal information was deemed important, as were anticipated familial benefits from genetic information, except when improper use of the information was suspected. Factors influencing family disclosure decisions included the family's biological and emotional closeness, and participants' perceived mental preparedness of the relative. Family disclosure of IRR among racial and ethnic minority individuals is a complex decision-making process wherein issues of individual privacy are entangled with family dynamic and familial benefit considerations. These data suggest that policies surrounding family disclosure of IRR should carefully consider participant preferences and adopt a participant-driven approach.

19.
J Palliat Care ; 35(4): 248-255, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32466734

RESUMO

OBJECTIVES: To describe the feasibility of a chaplain-led spiritually focused life review interview and the development of a spiritual legacy document (SLD) for patients with advanced diseases and to describe changes in spiritual well-being (SWB), spiritual coping strategies (SC), and quality of life (QOL) after receiving the SLD. PATIENTS AND METHODS: In all, 130 patients and support person (SP) pairs were recruited from July 2012 to January 2019. Following enrollment, demographic information was gathered and baseline questionnaires were administered. Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12) and a linear analog scale assessment (LASA) measured SWB. LASAs also measured QOL and emotional well-being (EWB). Positive Religious Coping Scale (RCOPE) measured SC. After completion of baseline forms, participants were interviewed (individually) by a chaplain. Interviews were digitally recorded, transcribed, and verified. Transcripts were edited and participants were given the opportunity to make adaptations. The participant-approved draft was then developed into a professionally printed SLD. Follow-up questionnaires were administered to assess change. RESULTS: Significant improvements from baseline to post-SLD follow-up were found for patients on the LASAs: SWB (average 7.7-8.3, P = .01), QOL (average 6.7-7.3, P = .03), EWB (average 6.9-7.5, P = .01), and on the positive RCOPE (average 1.8-2.0, P = .007). Effect sizes were approximately 0.25. Considering any improvement, 61.0% improved their positive RCOPE score, 46.6% improved EWB, and 39.7% improved SWB. No significant changes were found on the FACIT-Sp-12. No significant changes were found for SPs. CONCLUSION: The results suggest that the primary participants who completed the study benefited by significantly increasing their QOL, SWB, EWB, and SC.


Assuntos
Neoplasias , Qualidade de Vida , Espiritualidade , Adaptação Psicológica , Clero , Humanos , Inquéritos e Questionários
20.
J Health Psychol ; 14(3): 361-71, 2009 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-19293297

RESUMO

We applied a general theoretical framework to understand intentions to attend recommended follow-up for abnormal Pap results. Participants were 338 women attending university-affiliated clinics. Intention was associated with favorable attitudes toward follow-up (OR = 5.3); perceiving attending follow-up as consistent with one's self-concept (OR = 3.0); self-efficacy (OR = 1.8); and believing one would be told exactly what is wrong (OR = 1.3). Intention was negatively associated with believing the problem could be avoided by not returning for follow-up (OR = 0.75). Beliefs, affect and attitudes differed by race and ethnicity (all p < .05). Attendance at follow-up was related to attitude and self-concept (both p < .05). Results have implications for theory development and patient education.


Assuntos
Intenção , Modelos Teóricos , Aceitação pelo Paciente de Cuidados de Saúde , Esfregaço Vaginal/normas , Adolescente , Adulto , Feminino , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Pessoa de Meia-Idade , Grupos Raciais , Inquéritos e Questionários , Doenças do Colo do Útero/patologia , Adulto Jovem
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