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OBJECTIVE: Higher uncertainty is associated with poorer quality of life and may be impacted by clinician communication about the future. We determined how patients undergoing lung transplant evaluation experience uncertainty and communication about the future from clinicians. METHODS: We performed a convergent parallel mixed-methods study using a cross-sectional survey and semistructured interviews. Patients undergoing lung transplant evaluation at the University of Colorado and the University of Washington answered questions about future communication and completed the Mishel Uncertainty in Illness Scale-Adult (MUIS-A; range 33-165, higher scores indicate more uncertainty). Interviews were analyzed using content analysis. Integration of survey and interview results occurred during data interpretation. RESULTS: A total of 101 patients completed the survey (response rate: 47%). Twelve survey participants completed interviews. In the survey, most patients identified changing family roles as important (76%), which was infrequently discussed with clinicians (31%). Most patients (86%) worried about the quality of their life in the future, and 74% said that not knowing what to expect in the future prevented them from making plans. The mean MUIS-A score was 85.5 (standard deviation 15.3). Interviews revealed three themes: (1) uncertainty of the future distresses participants; (2) participants want practical information from clinicians; and (3) communication preferences vary among participants. CONCLUSION: Participants experienced distressing uncertainty and wanted information about the future. Communication topics that were important to participants were not always addressed by physicians. Clinicians should address how chronic lung disease and lung transplant can directly impact patients' lives and support patients to cope with uncertainty.
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Comunicação , Transplante de Pulmão , Relações Médico-Paciente , Qualidade de Vida , Humanos , Transplante de Pulmão/psicologia , Masculino , Feminino , Estudos Transversais , Incerteza , Pessoa de Meia-Idade , Inquéritos e Questionários , Seguimentos , Adulto , Preferência do Paciente/psicologia , Prognóstico , IdosoRESUMO
BACKGROUND: Persons living with Alzheimer disease and related dementia (ADRD) in nursing homes (NH) are often excluded from conversations about their health/safety. These omissions impinge on personhood and the rights to have care preferences heard and honored. While persons with ADRD maintain the ability to communicate their preferences long after their decision-making abilities are affected, little is known about how persons with ADRD understand the risks associated with their preferences. METHODS: As part of a larger focused ethnography, in-depth interviews and an adapted risk propensity questionnaire explored the risk perceptions of NH residents with ADRD (N=7) associated with their preferences for care and activities of daily living. RESULTS: Residents generally self-identified as risk avoiders ( M =3.2±1.84) on the risk propensity scale and were able to rate risk associated with preferences described within 5 thematic categories: 1) participation in decision-making, 2) risk awareness, 3) paying attention to safety, 4) reliance on nursing home staff and family, and 5) impacts on quality of life and quality of care. DISCUSSION: Results suggest NH residents with ADRD can express risk surrounding their preferences and should be encouraged to participate in discussions about their health and safety.
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Tomada de Decisões , Demência , Casas de Saúde , Humanos , Masculino , Feminino , Demência/psicologia , Idoso de 80 Anos ou mais , Idoso , Inquéritos e Questionários , Atividades Cotidianas/psicologia , Qualidade de Vida/psicologia , Preferência do Paciente/psicologiaRESUMO
BACKGROUND: Transitioning home from the structured hospital setting poses challenges for people with stroke (PWS) and their caregivers (CGs), as they navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period. METHODS: Between November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis. RESULTS: Sixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition. CONCLUSIONS: Our findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. The experiences of support at this transition and the preferences of PWS and CGs during this important period highlights the need for better care co-ordination, early and ongoing emotional support, and equitable access to tailored services and support. Experiences are likely to be improved by implementing a partnership approach with improved collaboration, including joint goal-setting, between PWS, CGs, healthcare professionals and support organisations.
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Cuidadores , Pesquisa Qualitativa , Acidente Vascular Cerebral , Humanos , Feminino , Cuidadores/psicologia , Masculino , Pessoa de Meia-Idade , Idoso , Acidente Vascular Cerebral/psicologia , Acidente Vascular Cerebral/terapia , Adulto , Alta do Paciente , Preferência do Paciente/psicologia , Idoso de 80 Anos ou mais , Apoio Social , Reabilitação do Acidente Vascular Cerebral/métodos , Reabilitação do Acidente Vascular Cerebral/psicologia , Serviços de Assistência DomiciliarRESUMO
AIM: This qualitative focus group study aims to asses cerclage-related symptoms, the impact of a cerclage on daily functioning and patient perspectives of their healthcare experience. This study extends beyond the current focus on surgical and obstetric outcomes of a cerclage, thereby contributing to a more comprehensive understanding of the challenges faced by individuals in the context of extreme preterm birth and fetal loss and the impact of a cerclage on multiple facets in life. METHODS: Participants were recruited from the Amsterdam University Medical Center, Amsterdam, the Netherlands or via the website of a Dutch patient organization for (extreme) preterm birth. Eligible participants were ≥ 18 years old with a previous vaginal and/or abdominal cerclage with a subsequent delivery at ≥ 34 weeks of gestation with neonatal survival. Two focus group discussions (FGD) were performed. A predefined format was used, which was identical for both the vaginal and abdominal cerclage group. The International Classification of Functioning, Disability and Health (ICF-DH) was used to provide structure. Outcomes were a broad range of participants reported perspectives on physical, emotional, and social-related quality of life. RESULTS: In the Vaginal Cerclage Group (VCG) and Abdominal Cerclage Group (ACG), respectively, 11 and 8 participants were included. Fear for a subsequent pregnancy loss was the most limiting factor to perform daily activities during pregnancy in all participants with a cerclage. Fear to conceive again because of prior second-trimester fetal loss was experienced by 27% in the VCG and 13% in the ACG. The majority of participants experienced a reduction in anxiety after placement of their cerclage (VCG = 64%, ACG = 75%). Decreased mobility/bedrest (VCG = 100%, ACG = 75%) and blood loss (VCG = 55%, ACG = 13%) were frequently mentioned complaints during pregnancy with cerclage. Other aspects mentioned in both groups were social isolation, the lack of societal participation, and the perceived need to quit work and sports. All participants in the abdominal cerclage group reported a lack of comprehensible and unambiguous information about obstetric management and expectations during pregnancy in secondary care hospitals. Clear communication between secondary and tertiary care hospitals about obstetric management following an abdominal cerclage, for example, about the need for cervical length measurements by ultrasound, the need for bedrest or advice concerning sexual activity was missing (63%). Psychologic support was desired in half of all participants, but was not offered to them. CONCLUSIONS: The fear of a subsequent pregnancy loss was reported as the most limiting factor in daily life by all participants. Cerclage placement resulted in the reduction of anxiety. Participants mentioned a significant impact of bedrest and activity restriction during pregnancy with cerclage on social participation and daily activities. Unfortunately, no high level evidence is available on this matter. Patients might even benefit from appropriate levels of physical activity throughout their pregnancy to promote their overall well-being. More evidence is needed to determine the optimal level of physical activity. There is a need for clear and unambiguous patient information about obstetric management.
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Cerclagem Cervical , Grupos Focais , Nascimento Prematuro , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Feminino , Gravidez , Nascimento Prematuro/psicologia , Adulto , Países Baixos , Qualidade de Vida/psicologia , Preferência do Paciente/psicologia , Adulto JovemRESUMO
BACKGROUND: Because health resources are limited, health programs should be compared to allow the most efficient ones to emerge. To that aim, health utility instruments have been developed to allow the calculation of quality-adjusted life-year (QALY). However, generic instruments, which can be used by any individual regardless of their health profile, typically consider the preferences of the general population when developing their value set. Consequently, they are often criticized for lacking sensitivity in certain domains, such as cancer. In response, the latest version of the Short Form 6-Dimension (SF-6Dv2) has been adapted to suit the preferences of patients with breast or colorectal cancer in the Canadian province of Quebec. By extension, our study's aim was to determine cancer population norms of utility among patients with breast or colorectal cancer in Quebec using the SF-6Dv2. METHOD: To determine the cancer population norms, we exploited the data that were used in the development of a new value set for the SF-6Dv2. This value set was developed considering the preferences of patients with breast or colorectal cancer. Stratification by time of data collection (i.e., T1 and T2), sociodemographic variables (i.e., age, sex, body mass index, and self-reported health problems affecting quality of life), and clinical aspects (i.e., cancer site, histopathological classification, cancer stage at diagnosis, modality, and treatment characteristics) was performed. RESULTS: In 353 observations, patients were more likely to have negative utility scores at T1 than at T2. Males had higher mean utility scores than females considering type of cancer and comorbidities. Considering the SF-6Dv2's dimensions, more females than males reported having health issues, most which concerned physical functioning. Significant differences by sex surfaced for all dimensions except "Role Limitation" and "Mental health." Patients with multifocal cancer had the highest mean and median utility values in all cancer sites considered. CONCLUSION: Cancer population norms can serve as a baseline for interpreting the scores obtained by a given population in comparison to the situation of another group. In this way, our results can assist in comparing utility scores among cancer patients with different sociodemographic groups to other patients/populations groups. To our knowledge, our identified utility norms are the first for patients with breast or colorectal cancer from Quebec.
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Neoplasias da Mama , Neoplasias Colorretais , Humanos , Quebeque , Feminino , Neoplasias Colorretais/psicologia , Masculino , Pessoa de Meia-Idade , Idoso , Neoplasias da Mama/psicologia , Inquéritos e Questionários , Adulto , Qualidade de Vida , Preferência do Paciente/psicologia , Anos de Vida Ajustados por Qualidade de Vida , Psicometria , Nível de Saúde , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: There are few support interventions for women with fear of childbirth tailored towards type of fears and parity. To inform the future development of an acceptable and relevant intervention for women with severe fear of childbirth, primary objectives were to examine: (1) pregnant women's experiences of and preferences for support and (2) barriers and facilitators to help-seeking. Secondary objectives were to examine if there are any differences based on pregnant women's parity. METHODS: Pregnant women with a severe fear of childbirth in Sweden completed an online cross-sectional survey between February and September 2022. Severe fear of childbirth was measured using the fear of childbirth scale. Quantitative data were analysed using descriptive and inferential statistics and free answers were analysed using manifest content analysis. A contiguous approach to integration was adopted with qualitative and quantitative findings reported separately. RESULTS: In total, 609 participants, 364 nulliparous and 245 parous women, had severe fear of childbirth. The main category "A twisting road to walk towards receiving support for fear of childbirth" was explored and described by the generic categories: Longing for support, Struggling to ask for support, and Facilitating aspects of seeking support. Over half (63.5%), of pregnant women without planned or ongoing treatment, wanted support for fear of childbirth. Most (60.2%) pregnant women with ongoing or completed fear of childbirth treatment regarded the treatment as less helpful or not at all helpful. If fear of childbirth treatment was not planned, 35.8% of women would have liked to have received treatment. Barriers to help seeking included stigma surrounding fear of childbirth, previous negative experiences with healthcare contacts, fear of not being believed, fear of not being listened to, and discomfort of having to face their fears. Facilitators to help seeking included receiving respectful professional support that was easily available, flexible, and close to home. CONCLUSIONS: Most pregnant women with severe fear of childbirth felt unsupported during pregnancy. Findings emphasise the need to develop individual and easily accessible psychological support for women with severe fear of childbirth, delivered by trained professionals with an empathetic and respectful attitude.
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Medo , Parto , Gestantes , Humanos , Feminino , Suécia , Gravidez , Medo/psicologia , Adulto , Parto/psicologia , Estudos Transversais , Gestantes/psicologia , Preferência do Paciente/psicologia , Paridade , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Inquéritos e Questionários , Comportamento de Busca de Ajuda , Adulto JovemRESUMO
OBJECTIVE: To assess psychosocial treatment preferences and factors that may affect treatment participation among young adults with a recent concussion and co-occurring anxiety. DESIGN: In-depth, semi-structured individual qualitative interviews, followed by thematic analysis using a hybrid deductive-inductive approach. SETTING: Academic medical center in the US Northeast. PARTICIPANTS: Seventeen young adults (18-24y) who sustained a concussion within the past 3-10 weeks and reported at least mild anxiety (≥5 on the Generalized Anxiety Disorder-7 questionnaire). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Primary outcomes include preferences for program content (eg, topics and skills), delivery modality, format, and barriers and facilitators to participation. RESULTS: We identified 4 domains characterizing participants' perceptions of and preferences for treatment. (1) Program content: Participants preferred a program early after injury that included psychoeducation and coping skills (eg, activity pacing, deep breathing, mindfulness). (2) Therapeutic processes: Participants preferred a person-centered approach in which clinicians normalized anxiety postconcussion and reassured them of recovery. (3) Program logistics: Participants endorsed that a brief, virtual program would be acceptable. They preferred access to program components through multiple modalities (eg, audio, video) and accommodations to manage concussion symptoms. (4) Barriers and facilitators to participation: Barriers included acute concussion symptoms (eg, screen sensitivity), time constraints, and forgetting sessions. Facilitators included a program that is flexible (format, scheduling), personalized (self-chosen mode for reminders, measure of accountability), and accessible (ie, advertising through health care professionals or social media). CONCLUSIONS: Participants need psychosocial support that normalizes their experiences and provides education and coping tools. Treatments should be accessible, flexible, and person centered. Psychosocial treatments meeting these preferences may help optimize the recovery of young adults with recent concussion and anxiety.
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Ansiedade , Concussão Encefálica , Preferência do Paciente , Pesquisa Qualitativa , Humanos , Masculino , Feminino , Adulto Jovem , Concussão Encefálica/psicologia , Concussão Encefálica/reabilitação , Concussão Encefálica/terapia , Preferência do Paciente/psicologia , Adolescente , Ansiedade/etiologia , Adaptação Psicológica , Entrevistas como Assunto , Educação de Pacientes como AssuntoRESUMO
BACKGROUND: Breast imaging clinics in the United States (U.S.) are increasingly implementing breast cancer risk assessment (BCRA) to align with evolving guideline recommendations but with limited uptake of risk-reduction care. Effectively communicating risk information to women is central to implementation efforts, but remains understudied in the U.S. This study aims to characterize, and identify factors associated with women's interest in and preferences for breast cancer risk communication. METHODS: This is a cross-sectional survey study of U.S. women presenting for a mammogram between January and March of 2021 at a large, tertiary breast imaging clinic. Survey items assessed women's interest in knowing their risk and preferences for risk communication if considered to be at high risk in hypothetical situations. Multivariable logistic regression modeling assessed factors associated with women's interest in knowing their personal risk and preferences for details around exact risk estimates. RESULTS: Among 1119 women, 72.7% were interested in knowing their breast cancer risk. If at high risk, 77% preferred to receive their exact risk estimate and preferred verbal (52.9% phone/47% in-person) vs. written (26.5% online/19.5% letter) communications. Adjusted regression analyses found that those with a primary family history of breast cancer were significantly more interested in knowing their risk (OR 1.5, 95% CI 1.0, 2.1, p = 0.04), while those categorized as "more than one race or other" were significantly less interested in knowing their risk (OR 0.4, 95% CI 0.2, 0.9, p = 0.02). Women 60 + years of age were significantly less likely to prefer exact estimates of their risk (OR 0.6, 95% CI 0.5, 0.98, p < 0.01), while women with greater than a high school education were significantly more likely to prefer exact risk estimates (OR 2.5, 95% CI 1.5, 4.2, p < 0.001). CONCLUSION: U.S. women in this study expressed strong interest in knowing their risk and preferred to receive exact risk estimates verbally if found to be at high risk. Sociodemographic and family history influenced women's interest and preferences for risk communication. Breast imaging centers implementing risk assessment should consider strategies tailored to women's preferences to increase interest in risk estimates and improve risk communication.
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Neoplasias da Mama , Mamografia , Preferência do Paciente , Humanos , Feminino , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/psicologia , Neoplasias da Mama/diagnóstico por imagem , Estudos Transversais , Pessoa de Meia-Idade , Preferência do Paciente/estatística & dados numéricos , Preferência do Paciente/psicologia , Estados Unidos , Adulto , Mamografia/estatística & dados numéricos , Mamografia/psicologia , Medição de Risco/métodos , Idoso , Comunicação , Inquéritos e Questionários , Centros de Atenção Terciária , Conhecimentos, Atitudes e Prática em SaúdeRESUMO
BACKGROUND: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. METHODS: Data for this paper were collected in three separate lived experience agenda-setting studies conducted over a 9-year period from 2013 to 2022; two group discussions and an open-ended online survey. Data were combined and thematic analysis undertaken. RESULTS: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. CONCLUSION: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power-sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. PATIENT OR PUBLIC CONTRIBUTION: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience.
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Saúde Mental , Pesquisa Qualitativa , Humanos , Austrália , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Inquéritos e Questionários , Participação do Paciente/psicologia , Preferência do Paciente/psicologia , Sujeitos da Pesquisa/psicologiaRESUMO
BACKGROUND: In response to climate change (CC), medicine needs to consider new aspects in health counselling of patients. Such climate-sensitive health counselling (CSHC) may include counselling patients on preventing and coping with climate-sensitive diseases or on leading healthy and climate-friendly lifestyles. This study aimed to identify previous participation in and preferences for CSHC as well as associated sociodemographic and attitudinal factors among the general public in Germany. METHODS: We conducted a cross-sectional study in a population-based online panel in five German federal states (04-06/2022). We performed descriptive statistics and multivariable regression analysis to assess prior participation in CSHC and content preferences regarding CSHC, as well as associations between sociodemographic variables and general preference for CSHC. RESULTS: Among 1491 participants (response rate 47.1%), 8.7% explicitly reported having participated in CSHC, while 39.9% had discussed at least one CSHC-related topic with physicians. In the studied sample, 46.7% of participants would like CSHC to be part of the consultation with their physician, while 33.9% rejected this idea. Participants aged 21 to 40 years (versus 51 to 60), individuals alarmed about CC (versus concerned/cautious/disengaged/doubtful/dismissive), and those politically oriented to the left (vs. centre or right) showed greater preference for CSHC in the multivariable regression model. Most participants wanted to talk about links to their personal health (65.1%) as opposed to links to the health of all people (33.2%). CONCLUSIONS: Almost half of the participants in this sample would like to receive CSHC, especially those who are younger, more alarmed about CC and more politically oriented to the left. More research and training on patient-centred implementation of CSHC is needed.
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Mudança Climática , Humanos , Estudos Transversais , Alemanha , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Adulto Jovem , Aconselhamento/estatística & dados numéricos , Idoso , Preferência do Paciente/estatística & dados numéricos , Preferência do Paciente/psicologia , Adolescente , Inquéritos e QuestionáriosRESUMO
Critical incident stress debriefing (CISD) is a commonly utilized intervention in the fire service that aims to minimize psychological harm and adverse mental health outcomes after a potentially traumatic incident. This study aimed to explore firefighter preferences regarding CISD and alternative post-critical incident interventions in relation to firefighter coping self-efficacy (FFCSE) and trauma coping self-efficacy (CSE-T). Firefighters (N = 241) completed an online survey and provided complete data. Most participants were White (n = 203, 84.2%), non-Hispanic (n = 221, 91.7%) men (94.2%; n = 227). CISD was the most preferred intervention among firefighters (n = 113, 46.9%) as compared to informal peer support (n = 31, 12.9%), formal one-on-one counseling (n = 29, 12.0%), and no intervention (n = 68, 28.2%). Firefighters who preferred CISD had statistically significant lower levels of FFCSE, R2 = .033-.044, ps = .012-.030, and CSE-T, R2 = .035-.061 ps = .017-.024, compared to those who preferred no intervention. Firefighters who preferred formal one-on-one counseling had statistically significantly lower levels of FFCSE, R2 = .033-.044, ps = .003-.011, and CSE-T, R2 = .035-0.061, p < .001-p = .002, compared to those who preferred no intervention. The findings from this study may guide future research to increase knowledge on firefighter intervention preferences and the association between preference and coping self-efficacy.
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Adaptação Psicológica , Bombeiros , Autoeficácia , Humanos , Bombeiros/psicologia , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Autorrelato , Intervenção em Crise/métodos , Inquéritos e Questionários , Aconselhamento/métodos , Transtornos de Estresse Pós-Traumáticos/psicologia , Preferência do Paciente/psicologiaRESUMO
PURPOSE: To assess preferences and outcome expectations for vagus nerve stimulation (VNS) and corpus callosotomy (CC) surgeries in the treatment of atonic seizure in Lennox-Gastaut syndrome (LGS). METHODS: A total of 260 surveys were collected from patients are caregivers of LGS patients via Research Electronic Data Capture (REDCap). RESULTS: Respondents reported an average acceptable atonic seizure reduction rate of 55.9% following VNS and 74.7% following CC. 21.3% (n = 50) were willing to be randomized. Respondents reported low willingness for randomization and a higher seizure reduction expectation with CC. CONCLUSION: Our findings guide surgical approaches for clinicians to consider patient preference in order to design future studies comparing effectiveness between these two procedures.
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Síndrome de Lennox-Gastaut , Preferência do Paciente , Estimulação do Nervo Vago , Humanos , Síndrome de Lennox-Gastaut/cirurgia , Feminino , Masculino , Criança , Estimulação do Nervo Vago/métodos , Adolescente , Preferência do Paciente/psicologia , Pré-Escolar , Corpo Caloso/cirurgia , Inquéritos e Questionários , Convulsões/cirurgia , Convulsões/psicologia , Adulto Jovem , Procedimentos Neurocirúrgicos/métodos , Resultado do Tratamento , Adulto , LactenteRESUMO
BACKGROUND: The rise of digital health services, particularly digital doctor consultations, has created a new paradigm in health care choice. While patients traditionally rely on digital reviews or referrals to select health care providers, the digital context often lacks such information, leading to reliance on visual cues such as profile pictures. Previous research has explored the impact of physical attractiveness in general service settings but is scant in the context of digital health care. OBJECTIVE: This study aims to fill the research gap by investigating how a health care provider's physical attractiveness influences patient preferences in a digital consultation setting. We also examine the moderating effects of disease severity and the availability of information on health care providers' qualifications. The study uses signal theory and the sexual attribution bias framework to understand these dynamics. METHODS: Three experimental studies were conducted to examine the influence of health care providers' physical attractiveness and gender on patient preferences in digital consultations. Study 1 (n=282) used a 2×2 between-subjects factorial design, manipulating doctor attractiveness and gender. Study 2 (n=158) focused on women doctors and manipulated disease severity and participant gender. Study 3 (n=150) replicated study 2 but added information about the providers' abilities. RESULTS: This research found that patients tend to choose attractive doctors of the opposite gender but are less likely to choose attractive doctors of the same gender. In addition, our studies revealed that such an effect is more prominent when the disease severity is high. Furthermore, the influence of gender stereotypes is mitigated in both the high and low disease severity conditions when service providers' qualification information is present. CONCLUSIONS: This research contributes to the literature on medical information systems research and sheds light on what information should be displayed on digital doctor consultation platforms. To counteract stereotype-based attractiveness biases, health care platforms should consider providing comprehensive qualification information alongside profile pictures.
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Preferência do Paciente , Humanos , Feminino , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Masculino , Adulto , Relações Médico-Paciente , Pessoa de Meia-Idade , Fatores Sexuais , Adulto JovemRESUMO
PURPOSE: Patient education is a core component of treating fibromyalgia and central sensitization disorders. We sought to evaluate whether patients with fibromyalgia prefer virtual or in-person educational classes as part of their treatment program, identify underlying factors with their educational modality choice, and highlight benefits or barriers associated with in-person or online educational sessions. DESIGN: A cross-sectional survey with a qualitative feedback component was utilized. METHODS: A voluntary, anonymous survey was distributed to all participants (in-person and virtual) of the fibromyalgia and chronic fatigue clinic treatment program from October 2021 through March 2022. RESULTS: In total 90 participants completed the survey. Nearly all (94%) agreed that the pathophysiologic education was relevant and valuable and (98%) agreed to feeling confident with implementing management strategies. Perceived connection between the participants varied between groups (85% of in-person vs 48% of online; p < .001), as did perceived engagement (100% of in-person vs 71% of online; p = .001). CONCLUSIONS: Patients value education and find it useful in treating fibromyalgia, regardless of the educational modality. The online group reported more limitations including less engagement, class participation, and connection with peers. CLINICAL IMPLICATIONS: As virtual education platforms become more widely available and may be easier to access than in-person options, it is important to understand patient preferences, benefits, and disadvantages of educational modalities to ensure education and patient outcomes remain equitable.
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Centros Médicos Acadêmicos , Fibromialgia , Educação de Pacientes como Assunto , Humanos , Fibromialgia/psicologia , Fibromialgia/terapia , Estudos Transversais , Feminino , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Centros Médicos Acadêmicos/estatística & dados numéricos , Centros Médicos Acadêmicos/organização & administração , Adulto , Educação de Pacientes como Assunto/métodos , Educação de Pacientes como Assunto/normas , Educação de Pacientes como Assunto/estatística & dados numéricos , Preferência do Paciente/estatística & dados numéricos , Preferência do Paciente/psicologia , IdosoRESUMO
AIMS: To explore adult inpatients' perceptions, understanding and preferences regarding the term 'malnutrition' and to identify the terms that adult inpatients report are used by themselves and health workers to describe malnutrition. DESIGN: This qualitative study was conducted using data collected for a separate qualitative study that investigated factors that influence the dietary intake of long-stay, acute adult inpatients. METHODS: Semi-structured interviews were conducted with a purposive sample of current inpatients. Data were analysed using inductive content analysis. RESULTS: Nineteen interviews were included (mean age 64 years (standard deviation ±17), 10 female (53%), 12 malnourished (63%)). Four categories were identified. 'Variation in patients' recognition of malnutrition' represents the differing abilities of patients to understand and identify with the term 'malnutrition'. 'Recognising individuals' needs and preferences' highlights patients' varying beliefs regarding whether 'malnutrition' is or is not an appropriate term and participants' suggestion that health workers should tailor the term used to each patient. 'Inconsistencies in health workers' and patients' practice regarding malnutrition terminology' encapsulates the multiple terms that were used to describe malnutrition by health workers and patients. 'Importance of malnutrition education' summarises patients' views that health workers should provide patient education on malnutrition prevention, management and complications. CONCLUSION: Findings highlight variations in patients' perceptions and understanding of the term 'malnutrition' and differences in the terms used by patients and health workers to describe malnutrition. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The terminology used by health workers to describe malnutrition risk or malnutrition to their patients can influence patients' recognition of their nutritional status and thus the multidisciplinary management of the condition. To ensure that patients receive information about their malnutrition risk or diagnosis in a way that meets their needs, health workers' practices must be revised. To do this, it is imperative to conduct further collaborative research with patients and health workers to identify optimum terms for 'malnutrition' and how health workers should communicate this to patients. IMPACT: There is a disparity in patients' perceptions, understanding and preferences for the term 'malnutrition' and there are inconsistencies in how health workers communicate malnutrition to patients. To support patients' recognition and understanding of their nutritional status, it is imperative for health workers to consider how they discuss malnutrition with patients. REPORTING METHOD: Adheres to the Consolidated Criteria for Reporting Qualitative Research (Tong et al., 2007). PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.
Assuntos
Pacientes Internados , Desnutrição , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Pacientes Internados/psicologia , Pacientes Internados/estatística & dados numéricos , Idoso , Adulto , Idoso de 80 Anos ou mais , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Terminologia como AssuntoRESUMO
Some United States Army Reserve/National Guard (USAR/NG) soldiers have substantial health needs, which may be service-related, but not necessarily resulting from deployment. However, most USAR/NG members need to have been deployed to qualify for Veterans Administration (VA) benefits. Therefore, many USAR/NG soldiers seek care from civilian healthcare providers (HCPs). Using a subset (N = 430 current/former soldiers) of Operation: SAFETY study data, we used regression models to examine differences in healthcare experiences, attitudes, and preferences by deployment status (never-deployed vs. previously-deployed). Final models controlled for age, sex, rank (enlisted vs. officer), military status (current vs. former military), and RAND SF-36 General Health Score. Over 40% of soldiers agreed that civilian HCPs should ask patients about their military service, but never-deployed soldiers were less likely to report being asked about their service (p < 0.05) or how their service affects their health (p < 0.10). Never-deployed soldiers were also less likely to attribute their health concerns to military service (p < 0.001). Although never-deployed soldiers were more likely to prefer receiving physical (p < 0.05) and mental (p < 0.05) healthcare outside of the VA than previously-deployed soldiers, never-deployed soldiers had low confidence in their HCP's understanding of their needs (49% thought that their civilian HCP did not understand them; 71% did not think that their civilian HCP could address military-related health concerns; 76% thought that their civilian HCP did not understand military culture). Findings demonstrate that although civilian HCPs may be the preferred (and only) choice for never-deployed USAR/NG soldiers, they may need additional support to provide care to this population.
Assuntos
Militares , Preferência do Paciente , Humanos , Feminino , Militares/psicologia , Militares/estatística & dados numéricos , Masculino , Estados Unidos , Adulto , Preferência do Paciente/estatística & dados numéricos , Preferência do Paciente/psicologia , Adulto Jovem , Destacamento Militar/psicologia , Destacamento Militar/estatística & dados numéricos , Pessoa de Meia-IdadeRESUMO
Generalized anxiety disorder (GAD) is a prevalent and chronic mental health condition, associated with considerable individual and economic burden. Despite the availability of effective treatments, many individuals do not access support. The current study explores treatment histories, barriers to help-seeking, and cognitive behavioral therapy (CBT) treatment preferences for individuals with clinically significant GAD symptoms. The utility of Health Belief Model (HBM) in predicting help-seeking is also examined. A cross-sectional design with 127 participants (Mage = 29.17; SD = 11.86; 80.3% female) was used. Sixty-two percent of participants reported previously seeking psychological treatment, and approximately 28% received CBT in the first instance. The most influential treatment barriers were a desire to solve the problem on one's own (M = 1.96, SD = 0.96), followed by affordability (M = 1.75, SD = 1.15) and feeling embarrassed or ashamed (M = 1.75, SD = 1.06). The most preferred treatment modes were in-person individual treatment (M = 7.59, SD = 2.86) followed by remote treatment via videoconferencing (M = 4.31, SD = 3.55). Approximately 38% of the variance in intention to seek treatment was associated with the HBM variables, with perceived benefit of treatment being the strongest predictor. Results have the potential to inform mental health service delivery by reducing treatment barriers and aligning public health campaigns with benefits of psychological treatments.
Assuntos
Transtornos de Ansiedade , Terapia Cognitivo-Comportamental , Aceitação pelo Paciente de Cuidados de Saúde , Preferência do Paciente , Humanos , Feminino , Masculino , Adulto , Transtornos de Ansiedade/terapia , Preferência do Paciente/psicologia , Estudos Transversais , Terapia Cognitivo-Comportamental/métodos , Pessoa de Meia-Idade , Adulto Jovem , Modelo de Crenças de Saúde , Acessibilidade aos Serviços de SaúdeRESUMO
BACKGROUND: Taking patient preference into consideration has received increased attention in the last decades. We conducted a meta-analysis to estimate the effects of patient preference on clinical outcome, satisfaction and adherence regarding treatment of depression and anxiety. METHODS: Pubmed, Embase, PsycINFO and Scopus were searched for (cluster) randomized controlled trials. Twenty-six randomized controlled clinical trials were included, comprising 3670 participants, examining the effect of patient preference regarding treatment of anxiety and depression on clinical outcome, satisfaction and/or adherence. RESULTS: No effect of patient preference was found on clinical outcome [d = 0.06, 95% CI = (-0.03, 0.15), p = 0.16, n = 23 studies]. A small effect of patient preference was found on treatment satisfaction [d = 0.33, 95% CI = (0.08, 0.59), p = 0.01, n = 6 studies] and on treatment adherence [OR = 1.55, 95% CI = (1.28, 1.87), p < 0.001, n = 22 studies]. LIMITATIONS: Patient preference is a heterogeneous concept, future studies should strive to equalize operationalization of preference. Subgroup analyses within this study should be interpreted with caution because the amount of studies per analysed subgroup was generally low. Most studies included in this meta-analysis focused on patients with depression. The small number of studies (n = 6) on satisfaction, prevents us from drawing firm conclusions. CONCLUSIONS: While this meta-analysis did not find a positive effect of considering patient preference on clinical outcome, it was associated with slightly better treatment satisfaction and adherence. Accommodating preference of patients with anxiety and depression can improve treatment. TRIAL REGISTRATION: PROSPERO: CRD42020172556.
Assuntos
Transtornos de Ansiedade , Transtorno Depressivo , Preferência do Paciente , Satisfação do Paciente , Humanos , Transtornos de Ansiedade/psicologia , Transtornos de Ansiedade/terapia , Transtorno Depressivo/psicologia , Transtorno Depressivo/terapia , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricos , Ensaios Clínicos Controlados Aleatórios como Assunto , Cooperação e Adesão ao Tratamento/psicologia , Cooperação e Adesão ao Tratamento/estatística & dados numéricos , Resultado do TratamentoRESUMO
BACKGROUND: Treatment of Substance Use Disorder (SUD) is complex and therefore including patients in the therapeutic process is needed. Patient-Centered Care (PCC) and Shared Decision-Making (SDM) have been associated with greater satisfaction, self-control, and less substance use. However, correlates of SDM have not been investigated in this population. METHOD: A cross-sectional analysis was carried out in 214 SUD patients to identify sociodemographic, clinical and psychological correlates of preferences and perceptions about participation in SDM and degree of activation. The Control Preference Scale (CPS), the Shared Decision-Making Questionnaire (SDM-9-Q) and the Patient Activation Measure (PAM) were used to assess the PCC elements. Multinomial logistic regression was used to analyze the correlates of the CPS variables (preferred role, perceived role, and role matching). For SDM-9-Q and PAM, multilevel linear regression was used. RESULTS: Preferring an active role, compared to a shared one, was significantly associated with higher educational level, lower neuroticism, absence of affective and alcohol use disorders, and higher quality of life. Perceiving greater participation was significantly associated with not being a new patient, having fewer legal problems, higher severity of alcohol consumption, not presenting polydrug use and main substance use different than opioids or sedatives. Activation was associated with higher scores in the personality trait activity, a preference for an active role and greater perception of being involved in the decision process. CONCLUSIONS: Patients with milder clinical profiles prefer an active role compared to a shared one. Patients who prefer or perceive a shared or passive role did not show relevant differences. Greater activation was related to preference for an active role and the perception of having been involved in decisions.
Assuntos
Participação do Paciente , Transtornos Relacionados ao Uso de Substâncias , Humanos , Estudos Transversais , Masculino , Transtornos Relacionados ao Uso de Substâncias/psicologia , Feminino , Participação do Paciente/psicologia , Adulto , Pessoa de Meia-Idade , Preferência do Paciente/psicologia , Tomada de Decisão Compartilhada , Assistência Centrada no Paciente , Tomada de Decisões , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The first medical oncology appointment serves as a platform for patients to comprehend their diagnosis and prognostic implications of cancer. This study aimed to determine patients' communication preferences during their first medical oncology appointment and to assess the disparities between patients' preferences and perceptions. METHODS: A total of 169 cancer patients participated by completing the Communication in First Medical Oncology Appointment Questionnaire (C-FAQ), a two-section questionnaire designed to assess patients' preferences and perceptions regarding Content (information provided and its extent), Facilitation (timing and location of information delivery), and Support (emotional support) during their first medical oncology appointment. A comparative analysis was conducted to assess the variations between preferences and perceptions. RESULTS: Content emerged as the most significant dimension compared to Facilitation and Support. The physician's knowledge, honesty, and ability to provide clear information were considered the most important attributes. Patients evaluated most of their preferences as "very important". Patients' perception of the communication dimensions present during their appointment was below preferences for 11 items, indicating significant discrepancies in clinical practice. CONCLUSIONS: Patients highly valued their preferences concerning Content, Facilitation, and Support dimensions of communication. However, patient preferences were more prominently oriented towards the Content dimension. The discrepancies between preferences and perceptions should be viewed as an opportunity for enhancing communication skills through training.