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1.
Stud Health Technol Inform ; 315: 691-692, 2024 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-39049384

RESUMO

Women with domestic violence experiences often refuse to seek help face-to-face due to embarrassment. They begin to share their emotions and seek help from online health communities. Understanding and responding to these posts can be crucial in providing timely support to the victims. We proposed a fine-tuned large language model (LLM) capable of accurately predicting the informational need based on the content of postings. We fine-tuned the LAMMA2-7B-chat model based on the guidance of identifying the information need and a dataset comprising 273 posts from Reddit, which are manually annotated by domain experts. Furthermore, we evaluated the performance of our model using a random sample of 15 posts, and 66.6% were accurately predicted. The results demonstrate that our model can rapidly capture the information needs expressed in the posts, enabling healthcare providers to provide timely and useful support based on our predictions.


Assuntos
Violência Doméstica , Sobreviventes , Humanos , Sobreviventes/psicologia , Feminino , Processamento de Linguagem Natural , Mídias Sociais , Avaliação das Necessidades
2.
Sci Rep ; 14(1): 10273, 2024 05 04.
Artigo em Inglês | MEDLINE | ID: mdl-38704403

RESUMO

Many people in the advanced stages of dementia require full-time caregivers, most of whom are family members who provide informal (non-specialized) care. It is important to provide these caregivers with high-quality information to help them understand and manage the symptoms and behaviors of dementia patients. This study aims to evaluate ChatGPT, a chatbot built using the Generative Pre-trained Transformer (GPT) large language model, in responding to information needs and information seeking of such informal caregivers. We identified the information needs of dementia patients based on the relevant literature (22 articles were selected from 2442 retrieved articles). From this analysis, we created a list of 31 items that describe these information needs, and used them to formulate 118 relevant questions. We then asked these questions to ChatGPT and investigated its responses. In the next phase, we asked 15 informal and 15 formal dementia-patient caregivers to analyze and evaluate these ChatGPT responses, using both quantitative (questionnaire) and qualitative (interview) approaches. In the interviews conducted, informal caregivers were more positive towards the use of ChatGPT to obtain non-specialized information about dementia compared to formal caregivers. However, ChatGPT struggled to provide satisfactory responses to more specialized (clinical) inquiries. In the questionnaire study, informal caregivers gave higher ratings to ChatGPT's responsiveness on the 31 items describing information needs, giving an overall mean score of 3.77 (SD 0.98) out of 5; the mean score among formal caregivers was 3.13 (SD 0.65), indicating that formal caregivers showed less trust in ChatGPT's responses compared to informal caregivers. ChatGPT's responses to non-clinical information needs related to dementia patients were generally satisfactory at this stage. As this tool is still under heavy development, it holds promise for providing even higher-quality information in response to information needs, particularly when developed in collaboration with healthcare professionals. Thus, large language models such as ChatGPT can serve as valuable sources of information for informal caregivers, although they may not fully meet the needs of formal caregivers who seek specialized (clinical) answers. Nevertheless, even in its current state, ChatGPT was able to provide responses to some of the clinical questions related to dementia that were asked.


Assuntos
Cuidadores , Demência , Comportamento de Busca de Informação , Humanos , Demência/terapia , Demência/psicologia , Cuidadores/psicologia , Feminino , Masculino , Inquéritos e Questionários , Idoso , Pessoa de Meia-Idade , Avaliação das Necessidades
3.
J Perianesth Nurs ; 2024 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-38762807

RESUMO

PURPOSE: This study elucidates the preoperative anxiety (PA), information need (IN), and health literacy (HL) levels of an elective preoperative sample in Switzerland and examines the possible associations between PA and the patients' characteristics. By knowing these patient dimensions, which can influence perioperative outcomes, one can tailor individualized nursing interventions to improve patients' surgical experience. DESIGN: This was a cross-sectional and correlational study. METHODS: The sample consisted of 88 patients who underwent a preoperative consultation at a Swiss tertiary hosptial. Patients' PA and IN were assessed using the Anxiety Preoperative and Information Scale, and their HL was measured using the Functional, Communicative, and Critical Health Literacy Scale. Data on other patient characteristics were collected from the patients, physicians, and electronic patient records. Association tests, as well as univariate regressions, were performed on PA, IN, HL, and patient characteristics. FINDINGS: Among participants, 40.91%, 78.41%, and 59% reported having PA, IN, and low HL, respectively. Finally, PA was associated with IN, HL, solitary living, and the American Society of Anesthesiology score. CONCLUSIONS: A high proportion of patients scheduled for presurgical consultation were found to be anxious. They presented high IN and low HL. An examination of patients' PA-associated characteristics can help improve their surgical experience. More studies should examine PA-associated characteristics.

4.
J Med Internet Res ; 26: e47484, 2024 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-38669066

RESUMO

BACKGROUND: Pregnancy-related death is on the rise in the United States, and there are significant disparities in outcomes for Black patients. Most solutions that address pregnancy-related death are hospital based, which rely on patients recognizing symptoms and seeking care from a health system, an area where many Black patients have reported experiencing bias. There is a need for patient-centered solutions that support and encourage postpartum people to seek care for severe symptoms. OBJECTIVE: We aimed to determine the design needs for a mobile health (mHealth) patient-reported outcomes and decision-support system to assist Black patients in assessing when to seek medical care for severe postpartum symptoms. These findings may also support different perinatal populations and minoritized groups in other clinical settings. METHODS: We conducted semistructured interviews with 36 participants-15 (42%) obstetric health professionals, 10 (28%) mental health professionals, and 11 (31%) postpartum Black patients. The interview questions included the following: current practices for symptom monitoring, barriers to and facilitators of effective monitoring, and design requirements for an mHealth system that supports monitoring for severe symptoms. Interviews were audio recorded and transcribed. We analyzed transcripts using directed content analysis and the constant comparative process. We adopted a thematic analysis approach, eliciting themes deductively using conceptual frameworks from health behavior and human information processing, while also allowing new themes to inductively arise from the data. Our team involved multiple coders to promote reliability through a consensus process. RESULTS: Our findings revealed considerations related to relevant symptom inputs for postpartum support, the drivers that may affect symptom processing, and the design needs for symptom self-monitoring and patient decision-support interventions. First, participants viewed both somatic and psychological symptom inputs as important to capture. Second, self-perception; previous experience; sociocultural, financial, environmental, and health systems-level factors were all perceived to impact how patients processed, made decisions about, and acted upon their symptoms. Third, participants provided recommendations for system design that involved allowing for user control and freedom. They also stressed the importance of careful wording of decision-support messages, such that messages that recommend them to seek care convey urgency but do not provoke anxiety. Alternatively, messages that recommend they may not need care should make the patient feel heard and reassured. CONCLUSIONS: Future solutions for postpartum symptom monitoring should include both somatic and psychological symptoms, which may require combining existing measures to elicit symptoms in a nuanced manner. Solutions should allow for varied, safe interactions to suit individual needs. While mHealth or other apps may not be able to address all the social or financial needs of a person, they may at least provide information, so that patients can easily access other supportive resources.


Assuntos
Período Pós-Parto , Pesquisa Qualitativa , Telemedicina , Humanos , Feminino , Adulto , Período Pós-Parto/psicologia , Telemedicina/métodos , Negro ou Afro-Americano/psicologia , Gravidez , Entrevistas como Assunto
5.
Birth ; 51(1): 3-12, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37766494

RESUMO

AIMS: This study aims to comprehensively explore the decision-making requirements of women contemplating vaginal birth after cesarean (VBAC). DESIGN & METHODS: A meta-synthesis approach was employed for this study. Using an integrative methodology, we conducted a systematic assessment of women's experiences and needs related to VBAC decision-making. A comprehensive search was conducted across The Cochrane Library, PubMed, EMBASE, Ovid Medline, SCOPUS, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, and Wan Fang databases to identify pertinent studies between 2000 and 2022. Furthermore, the reference lists of the included studies were thoroughly examined. RESULTS: Fifteen studies were incorporated, from which seven themes emerged: emotional changes, preference for vaginal birth, unmet information needs, influences on decision-making, decision-making autonomy, aligning information provision with decision-support needs, and the requirement for support systems. Two primary syntheses were constructed on the decision-making process and the need for decision-making aids, respectively. CONCLUSION: Women opting for VBAC experienced emotional shifts during their decision-making process in pregnancy. There remains a need for an enhanced decision-making tool to guide them in their choice. Recommendations for implementation in VBAC decision aids include facilitating women's involvement in decision-making, satisfying their information needs, and delivering appropriate emotional support.


Assuntos
Nascimento Vaginal Após Cesárea , Gravidez , Feminino , Humanos , Nascimento Vaginal Após Cesárea/psicologia , Tomada de Decisões , Técnicas de Apoio para a Decisão
6.
JMIR Form Res ; 7: e47409, 2023 Sep 11.
Artigo em Inglês | MEDLINE | ID: mdl-37695648

RESUMO

BACKGROUND: Attention-deficit/hyperactivity disorder (ADHD) is a highly prevalent childhood and adult behavioral disorder. Internet searches for ADHD information are rising, particularly for diagnosis and treatment. Despite effective ADHD treatments, research suggests that there are delays in seeking help for ADHD. Identifying ways to shorten delays is important for minimizing morbidity associated with ADHD. One way to shorten these delays is to improve internet health information resources. Research shows that parents of children with ADHD feel that much of the information available is technical and not tailored for their child's needs and verbal instructions given by health care providers were too pharmacologically focused with limited information about how to manage and support ADHD symptoms in daily living. A majority of parents search the internet for general and pharmacological information for ADHD and prefer web-based resources for learning about ADHD, but web-based resources may be inaccurate and of low quality. Ensuring accurate information through the internet is an important step in assisting parents and adults in making informed decisions about the diagnosis and treatment of ADHD. OBJECTIVE: Although a great deal of information regarding ADHD is available on the internet, some information is not based on scientific evidence or is difficult for stakeholders to understand. Determining gaps in access to accurate ADHD information and stakeholder interest in the type of information desired is important in improving patient engagement with the health care system, but minimal research addresses these needs. This study aims to determine the information needs and formatting needs of web-based content for adults with ADHD and parents of children with ADHD in order to improve user experience and engagement. METHODS: This was a 3-phase study consisting of in-depth phone interviews about experiences with ADHD and barriers searching for ADHD-related information, focus groups where participants were instructed to consider the pathways by which they made decisions using web-based resources, and observing participants interacting with a newly developed website tailored for adults with potential ADHD and caregivers of children who had or might have ADHD. Phase 1 individual interviews and phase 2 focus groups identified the needs of the ADHD stakeholders related to website content and format. Interview and focus group findings were used to develop a website. Phase 3 used think-aloud interviews to evaluate website usability to inform the tailoring of the website based on user feedback. RESULTS: Interviews and focus group findings revealed preferences for ADHD website information and content, website layout, and information sources. Themes included a preference for destigmatizing information about ADHD, information specific to patient demographics, and evidence-based information tailored to lay audiences. CONCLUSIONS: ADHD stakeholders are specifically seeking positive information about ADHD presented in a user-friendly format.

7.
Prev Med Rep ; 35: 102325, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37601828

RESUMO

Prior faecal Hemoglobin (f-Hb) concentrations of a negative fecal immunochemical test (FIT) can be used for risk stratification in colorectal cancer (CRC) screening. Individuals with higher f-Hb concentrations may benefit from a shorter screening interval (1 year), whereas individuals with undetectable f-Hb concentrations could benefit from a longer screening interval (3 year). Individuals' views on personalised CRC screening and information needed to make a well-informed decision is unknown. We conducted three semi-structured focus groups among individuals eligible for CRC screening (i.e. men and women aged 55 to 75) in the Netherlands. Thematic analysis was used to analyse participants' information need on personalised CRC screening strategies. Fourteen individuals took part. The majority were positive about CRC screening and indicated that they would participate in personalised CRC screening. The rationale for a longer interval among those at lowest risk was, however, unclear for many. The preferred information on individual risk was variable: ranging from full information to only information on the personalised strategy without mentioning the risk. It was not possible to address everyone's need with a single approach. Additional communications, e.g. public media campaigns, billboards, videos on social media, were also suggested as necessary. This study showed that preferences on receiving information on individual CRC risk varied substantially and no consensus was reached. Introducing a personalised screening programme will require careful communication, particularly around the rationale for the strategy, and a layered approach to deliver information.

8.
Am J Emerg Med ; 69: 147-153, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37119700

RESUMO

BACKGROUND: Door-to-needle time (DNT) is a critical consideration in emergency management of acute ischemic stroke (AIS). Deficiencies in the widely applied standard hospital workflow process, based on international guidelines, impede rapid treatment of AIS patients. We developed an in-hospital stroke system to reduce DNT and optimize hospitals' emergency procedures. OBJECTIVES: To investigate the effect of the in-hospital stroke system on the hospital workflow for AIS patients. METHODS: We performed a retrospective study on AIS patients between June 2017 and December 2021. AIS cases were assigned to a pre-intervention group (before the in-hospital stroke system was established) and a post-intervention group (after the system's establishment). We compared the two groups' demographic features, clinical characteristics, treatments and outcomes, and time metrics data. RESULTS: We analyzed 1031 cases, comprising 474 and 557 cases in the pre-intervention and post-intervention groups, respectively. Baseline data were similar for both groups. Significantly more patients in the post-intervention group (41.11%) were treated with intravenous thrombolysis (IVT) or endovascular therapy (ET) compared with those in the pre-intervention group (8.65%) (p < 0.001). DNT was markedly improved (decreasing from 118 (80.5-137) min to 26 (21-38) min among patients in the post-intervention group treated with IVT or bridging ET. Consequently, a much higher proportion of these patients (92.64%) received IVT within 60 min compared with those in the pre-intervention group (17.39%) (p < 0.001). Consequently, their hospital stays were shorter (8 [6-11] days vs. 10 [8-12] days for the pre-intervention group; p < 0.001), and they showed improved National Institutes of Health Stroke Scale (NIHSS) scores at discharge (-2 [-5-0] vs. -1 [-2-0], p < 0.001). CONCLUSION: DNT was significantly reduced following implementation of the in-hospital stroke system, which contributed to improved patient outcomes measured by the length of hospital stay and NIHSS scores.


Assuntos
Isquemia Encefálica , AVC Isquêmico , Acidente Vascular Cerebral , Humanos , AVC Isquêmico/tratamento farmacológico , Estudos Retrospectivos , Terapia Trombolítica/métodos , Acidente Vascular Cerebral/tratamento farmacológico , Hospitais , Fibrinolíticos/uso terapêutico , Tempo para o Tratamento , Resultado do Tratamento , Isquemia Encefálica/tratamento farmacológico
9.
JMIR Form Res ; 7: e44661, 2023 Apr 18.
Artigo em Inglês | MEDLINE | ID: mdl-37071451

RESUMO

BACKGROUND: Prenatal education encourages healthy behavioral choices and reduces rates of adverse birth outcomes. The use of mobile health (mHealth) technologies during pregnancy is increasing and changing how pregnant people acquire prenatal education. SmartMom is an evidence-based prenatal education SMS text messaging program that overcomes barriers to prenatal class attendance, including rural or remote location, cost, stigma among participants, lack of instructors, and cessation of classes during the COVID-19 pandemic. OBJECTIVE: We sought to explore perceived information needs and preferences for the content and structure of prenatal education mHealth programs among persons enrolled in or eligible to enroll in SmartMom. METHODS: This was a qualitative focus group study conducted as part of a development and usability study of the SmartMom program. Participants were older than 19 years of age, Canadian residents, fluent in English, and either currently pregnant or pregnant within the last year. We asked open-ended questions about information-seeking behaviors during pregnancy, the nature of the information that participants were seeking, how they wanted to receive information, and if SmartMom was meeting these needs. Focus groups took place via videoconference technology (Zoom) between August and December 2020. We used reflexive thematic analysis to identify themes that emerged from the data and the constant comparison method to compare initial coding to emerging themes. RESULTS: We conducted 6 semistructured focus groups with 16 participants. All participants reported living with a partner and owning a cell phone. The majority (n=13, 81%) used at least 1 app for prenatal education. Our analysis revealed that "having reliable information is the most important thing" (theme 1); pregnant people value inclusive, local, and strength-based information (theme 2); and SMS text messages are a simple, easy, and timely modality ("It was nice to have that [information] fed to you"; theme 3). Participants perceived that SmartMom SMS text messages met their needs for prenatal education and were more convenient than using apps. SmartMom's opt-in supplemental message streams, which allowed users to tailor the program to their needs, were viewed favorably. Participants also identified that prenatal education programs were not meeting the needs of diverse populations, such as Indigenous people and LGBTQIA2S+ (lesbian, gay, bisexual, transgender, queer and/or questioning, intersex, asexual, Two-Spirit plus) communities. CONCLUSIONS: The shift toward digital prenatal education, accelerated by the COVID-19 pandemic, has resulted in a plethora of web- or mobile technology-based programs, but few of these have been evaluated. Participants in our focus groups revealed concerns about the reliability and comprehensiveness of digital resources for prenatal education. The SmartMom SMS text messaging program was viewed as being evidence-based, providing comprehensive content without searching, and permitting tailoring to individual needs through opt-in message streams. Prenatal education must also meet the needs of diverse populations.

10.
Health Info Libr J ; 40(4): 390-399, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36373187

RESUMO

BACKGROUND: Pandemics highlight the increasing role of information and communications technology for improving access to health care. This study aimed to present a bibliometric analysis of the concept of digital divide reported in the published articles concerning the coronavirus disease 2019 (COVID-19) pandemic. METHODS: To conduct this bibliometric analysis of research topics and trends, we used VOSviewer software. We developed a search strategy to retrieve peer-reviewed publications related to 'digital divide in the COVID-19 era' from the Scopus database. RESULTS: In total, 241 publications on the topic of digital divide and COVID-19 were retrieved from Scopus database between 2020 and 2021. The analysis of keywords co-occurrence of research topics revealed four main clusters including: 'telemedicine', 'Internet access and Internet use', 'e-learning' and 'epidemiology'. Seven characteristic categories were examined in these research topics, including: sociodemographic, economic, social, cultural, personal, material and motivational. CONCLUSION: 'Telemedicine' and 'Internet access and Internet use' as the largest clusters are connected to topics addressing inequalities in online health care access. Thus, policymakers should develop or modify policies in more egalitarian Internet access for all community members not only during a pandemic like the COVID-19 but also at regular times.


Assuntos
COVID-19 , Telemedicina , Humanos , Pandemias , Internet , Bibliometria
11.
Patient Educ Couns ; 107: 107589, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36508974

RESUMO

OBJECTIVES: We aimed to study the information needs of the spouses of stroke survivors, and whether the functional ability, depressive mood, or demographic factors of the survivors or spouses associate with the information needs or satisfaction with care. We also investigated whether prescheduled follow-up improves information provision. METHODS: Ninety-six spouses of consecutive stroke survivors completed a questionnaire on their information needs and satisfaction with care 21 months post-stroke. The results of samples before (n = 59) and after (n = 37) the implementation of the prescheduled follow-up were compared. RESULTS: Before the follow-up, 75% of the spouses had received information on stroke and the well-being of the survivor, with 31% having received information on the survivors' and 18% on the spouses' own mood. The information provision improved after the follow-up: 86%, 44%, and 50%, respectively. The need for more information and satisfaction with care were associated with the spouse's depression, but not with functional impairment. CONCLUSIONS: Even if information on stroke is satisfactorily provided, the mood and well-being of spouses is often neglected. Information provision and support can be improved with systematic prescheduled follow-up. PRACTICE IMPLICATIONS: Our results suggest the routine assessment of the depressive symptoms and needs of spouses of stroke survivors.


Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Cônjuges , Seguimentos , Depressão , Satisfação do Paciente , Reabilitação do Acidente Vascular Cerebral/métodos , Satisfação Pessoal , Cuidadores
12.
BMC Pregnancy Childbirth ; 22(1): 893, 2022 Dec 02.
Artigo em Inglês | MEDLINE | ID: mdl-36461026

RESUMO

BACKGROUND: Online information about safety of medications during pregnancy and breastfeeding is shown to be conflicting, resulting in anxiety and abstaining from use. The aim of this study was to characterize questions to SafeMotherMedicine, a web-based medicines information service for pregnant and breastfeeding women, to identify target areas that could guide subsequent development of medicines information directed at pregnant and breastfeeding women. METHODS: The SafeMotherMedicine database contains all questions received through the web-based service and their corresponding answers. A retrospective database analysis of questions received from January 2016 to September 2018 was performed, using descriptive statistics. RESULTS: A total of 11 618 questions were received including 5 985 questions (51.5%) concerning pregnancy, 4 878 questions (42.0%) concerning breastfeeding, and 755 questions (6.5%) concerning both conditions. The medications in question represented all therapeutic groups with paracetamol (7.0%), ibuprofen (4.1%), cetirizine (3.3%), desloratadine (3.2%) and meclizine (2.8%) being the top five. The 20 medications most frequently asked about for either pregnancy, breastfeeding or both pregnancy and breastfeeding, constituted half of all questions and were used to identify target areas. These included both symptomatic relief of common complaints, such as pain, nausea, and rhinitis, as well as treatment of chronic conditions such as allergy, psychiatric disorders, and asthma. Analysis of a subset of questions showed that most of these questions were asked before use of medications in a current pregnancy (49%) or during breastfeeding (72%). The questions concerned use of medications in all stages of pregnancy and breastfeeding. For 81.6% of the questions concerning pregnancy, and for 84.2% of the questions concerning breastfeeding, information of no or low risk for the foetus or the breastfed infant was provided by SafeMotherMedicine. CONCLUSIONS: We found that target areas for medicines information directed at pregnant and breastfeeding women included both symptomatic relief of common complaints as well as treatment of chronic conditions. The questions concerned a wide range of medications and involved use in all stages of pregnancy and breastfeeding. Our findings indicate that developing medicines information addressing the identified target areas will meet the information need for a large proportion of this patient group.


Assuntos
Aleitamento Materno , Hipersensibilidade , Lactente , Gravidez , Humanos , Feminino , Estudos Retrospectivos , Serviços de Informação , Internet
13.
BMC Public Health ; 22(1): 2182, 2022 11 25.
Artigo em Inglês | MEDLINE | ID: mdl-36434564

RESUMO

PURPOSE: To determine the prevalence and associated factors of self-reported medication information needs among medication users in a general population aged 40 years and above - The Tromsø Study. METHODS: Cross-sectional study of medication users (n = 10,231) among participants in the Tromsø Study, a descriptive analysis of questionnaire data and multivariable logistic regression (n = 9,194). RESULTS: Sixteen percent of medication users expressed a need for more information about own medications. Overall, medication users agreed to a higher degree to have received information from the GP compared to the pharmacy. Concerned medication users and those disagreeing to have received information about side effects had the highest odds for needing more information (OR 5.07, 95% CI 4.43-5.81) and (OR 2.21, 95% CI 1.83-2.68), respectively. Medication users who used heart medications (e.g., nitroglycerin, antiarrhythmics, anticoagulants) (OR 1.71, 95% CI 1.46-2.01), medication for hypothyroidism (OR 1.36, 95% CI 1.13-1.64) or had moderately health anxiety had expressed need for medication information. Whereas medication users with lower education, those that never used internet to search for health advice, and medication users who disagreed to have received information about reason-for-use were associated with lower odds (OR 0.75, 95% CI 0.62-0.91), (OR 0.85, 95% CI 0.74-0.98) and (OR 0.68, 95% CI 0.53-0.88), respectively. CONCLUSION: This study demonstrated that there is need for more information about own medications in a general population aged 40 years and above and shed light on several characteristics of medication users with expressed information need which is important when tailoring the right information to the right person.


Assuntos
Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Farmácias , Humanos , Autorrelato , Estudos Transversais , Inquéritos e Questionários , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/epidemiologia
14.
Eur J Cancer Care (Engl) ; 31(6): e13730, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36226900

RESUMO

OBJECTIVE: The objective of this work is to identify unmet information needs of long-term-survivors of breast cancer (BC) and future research needs from the perspectives of patients and health care professionals. METHODS: Two online Delphi surveys were conducted. Participants in Survey 1 were patients. Participants in Survey 2 were health care professionals from both primary and secondary care involved in BC care. Both surveys included three successive rounds. The first round aimed to identify research and information needs; the second round aimed to rank the relative importance of those needs; the third round aimed to find consensus. RESULTS: The most important information needs were self-management recommendations of common health problems after treatment and complications of breast reconstruction after 5 years. The most important research priorities were related to interventions and tools to increase information provision by professionals about certain tests, diet, and coordinated action between primary and specialised care during follow-up, and indications and safety issues of pregnancy in survivors. CONCLUSIONS: Two fundamental ideas were identified: (1) Patients request information about self-management common health problems after treatment and breast reconstruction complications. (2) Health care professionals emphasise the need for a standardised approach based on protocols, recommendations, and coordinated actions in the provision of information. IMPLICATIONS FOR CANCER SURVIVORS: Given the increasing number of BC survivors, it is essential to identify information and research needs to improve their care and health outcomes.


Assuntos
Neoplasias da Mama , Gravidez , Feminino , Humanos , Neoplasias da Mama/terapia , Neoplasias da Mama/complicações , Sobrevivência , Sobreviventes , Pessoal de Saúde , Inquéritos e Questionários , Pesquisa
15.
Palliat Support Care ; : 1-9, 2022 Oct 11.
Artigo em Inglês | MEDLINE | ID: mdl-36217687

RESUMO

BACKGROUND: Adult daughters concerned about getting breast cancer throughout their lives and required support because their mothers had breast cancer. OBJECTIVES: This article aims to examine the revised Information and Support Needs Questionnaire (ISNQ) and validate it in a Taiwanese community population comprising daughters of mothers with breast cancer. METHODS: Using convenience sampling, daughters of mothers with breast cancer were recruited and were separated into 2 samples (Sample 1, n = 102, and Sample 2, n = 118). First, we translated and modified the ISNQ to ensure cultural adaptation and formed ISNQ Chinese version (ISNQ-C). Second, we conducted an exploratory factor analysis using both samples to explore the ISNQ-C factor structure. Finally, we tested the criterion validity and known-group validity of the ISNQ-C using Sample 2. RESULTS: Thirty-two items addressing 5 factors were identified for the ISNQ-C. Each factor had good internal consistency. The criterion validity was supported by significant correlations between the ISNQ-C scores and scores on the impacts of an event, anxiety, and depression. Known-group comparisons revealed that the group with deceased mothers reported significantly more unmet needs related to "releasing my anxiety" compared to the group where the mother was stable and undergoing regular follow-ups. SIGNIFICANCE OF RESULTS: The ISNQ-C demonstrated good reliability and validity in terms of assessing needs among daughters of mothers with breast cancer in Taiwan. Using this assessment tool before genetic counseling to target the individual needs of this population at risk for breast cancer would be helpful to provide personalized care.

16.
BMC Psychiatry ; 22(1): 502, 2022 07 27.
Artigo em Inglês | MEDLINE | ID: mdl-35896995

RESUMO

BACKGROUND: Previous studies have identified substantial unmet information needs in people with depression and anxiety. Sufficient information about the disorder, treatment, available services, and strategies for self-management is essential as it may influence quality of care and patients' quality of life. This scoping review aimed to provide a broad overview of information needs of people with depression and anxiety as well as the sources that they use to seek this information. METHODS: We included all primary research published in English that investigated information needs or information sources in people with depression or anxiety, with no restrictions imposed on the study design, location, setting, or participant characteristics. Six electronic databases (MEDLINE, Embase, PsycINFO, CINAHL, LISTA, Web of Science) and the grey literature (Google and Google Scholar) were searched for relevant studies published up to November 2021. Two reviewers independently screened articles and extracted data. Narrative synthesis was performed to identify key themes of information needs and information sources. Factors associated with information needs/sources such as demographic variables and symptom severity were also identified. RESULTS: Fifty-six studies (comprising 8320 participants) were included. Information needs were categorised into seven themes, including general facts, treatment, lived experience, healthcare services, coping, financial/legal, and other information. The most frequently reported needs in both people with depression and anxiety were general facts and treatment information. Subclinical samples who self-reported depressive/anxious symptoms appeared less interested in treatment information than patients with clinical diagnoses. Information sources were summarised into five categories: health professionals, written materials, media, interpersonal interactions, and organisational resources. Health professionals and media (including the internet) were the most frequently adopted and preferred sources. Although few studies have examined factors associated with information needs and information sources, there is preliminary evidence that symptom severity and disease subtypes are related to information needs/sources, whereas findings on demographic factors were mixed. CONCLUSIONS: Information needs appear to be high in people with depression and anxiety. Future research should examine differences between subgroups and associated factors such as the treatment course. Personalised information provision strategies are also needed to customise information according to individual needs and patient profiles. TRIAL REGISTRATION: The protocol of this scoping review was registered on Open Science Framework (OSF; link: https://doi.org/10.17605/OSF.IO/DF2M6 ).


Assuntos
Ansiedade , Depressão , Qualidade de Vida , Adaptação Psicológica , Ansiedade/terapia , Depressão/terapia , Humanos , Qualidade da Assistência à Saúde
17.
PEC Innov ; 1: 100018, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37213745

RESUMO

Objective: To explore parents' self-reported experiences and information needs regarding recognition and management of pediatric anaphylaxis. Methods: We searched Ovid Medline, Ovid PsychInfo, CINAHL Plus, the Cochrane Library, and grey literature to identify primary studies in English or French published since 2000. We used a mixed-method appraisal tool and convergent integrated approach to assess quality and synthesize data, respectively. Results: 43 studies were included (22 quantitative, 19 qualitative, and 2 mixed-method); 77% of studies had high methodological quality. Parents' experiences were categorized as: recognizing an anaphylactic reaction; managing and responding to a reaction; emotional impact of caring for a child at risk of anaphylaxis; and interaction with the health system and healthcare providers. Parents' information needs were categorized into themes relating to: gaps in knowledge and information; type of information desired; information sources; and information delivery format. Conclusion: Negative emotional experiences and a general lack of information were commonly reported by parents of included studies. Provision of relevant and comprehensible information may help parents to make informed decisions and manage reactions promptly. Innovation: The findings of this review are guiding the development of an innovative knowledge translation tool (KT) as part of a larger initiative of developing a suite of parent-focused KT tools for acute childhood conditions.

18.
J Intellect Disabil ; 26(3): 704-717, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33998344

RESUMO

AIMS: The aims of this review were: (1) to obtain an overview of caregiver-reported information needs; and (2) to investigate if there are information needs that are unique for caregivers of persons with rare epilepsies. METHOD: We followed the scoping review framework outlined by Arksey and O'Malley and the preferred reporting items outlined by PRISMA. RESULTS: Among the 17 articles that met the inclusion criteria, 5 included caregivers of persons with rare epilepsies. Categories of information needs: (1) Medical information; (2) Information on how to cope with emotional distress; (3) Experiential information from peers; and (4) Interdisciplinary information exchange. The need for disorder-specific information seemed particularly important for caregivers of persons with rare epilepsies. CONCLUSION: There is a need for further studies, particularly on formal caregivers' information needs.


Assuntos
Epilepsia , Deficiência Intelectual , Adaptação Psicológica , Cuidadores/psicologia , Humanos , Doenças Raras
19.
J Oncol Pharm Pract ; 28(8): 1687-1695, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34590516

RESUMO

BACKGROUND: Breast cancer survivor goes through a period of needs in their post-treatment daily life. Relatively few studies have been conducted to understand the unmet needs among breast cancer survivors in Bangladesh. Recognize and measure patterns and predictors of unmet needs of breast cancer patients was the aim of the study. OBJECTIVE: To identify and measure patterns and predictors of unmet needs of breast cancer patients in Bangladesh. METHOD: A cross-sectional study among 138 breast cancer patients; conveniently selected from two public and two private cancer institutes. Face-to-face interview for data collection and medical record review for checklist was done. Unmet needs have been determined by the supportive care needs survey short form 34 scale. Logistic regression analyses were performed to identify the predictors of unmet needs. RESULTS: The study indicated the top 10 moderate-to-high needs; among which the top five needs were from the information need domain. Surprisingly, private cancer treatment centers were identified as a significant predictor for unmet needs. Patients from private cancer institutes reported more explanation needs as well as needs with their physical and daily living and sexuality. Furthermore, the type of treatment like patient receiving combine treatment therapy reported more need for help compared to the patient receiving chemotherapy alone. Moreover, housewives reported the low need for patient care and support systems as a result of their reluctant behavior towards their health. CONCLUSION: Individual's unmet need assessment should be a part of every treatment protocol of breast cancer for a better treatment outcome.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Estudos Transversais , Neoplasias da Mama/terapia , Avaliação das Necessidades , Necessidades e Demandas de Serviços de Saúde , Inquéritos e Questionários , Bangladesh , Qualidade de Vida
20.
Eur J Cancer Care (Engl) ; 30(6): e13503, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34549483

RESUMO

OBJECTIVE: The objective of this study is to explore the specific information and communication needs of men affected by prostate cancer to inform the development of educational materials for clinicians. METHODS: This is a qualitative descriptive study. A purposive sampling strategy was used to identify men at different cancer stages and with experience of different treatment regimens. Semistructured interviews (25) were conducted with 19 men and six carers over the phone. Interview data were analysed using a framework approach. RESULTS: Four themes emerged: gaps in the information provided by secondary care doctors and nurses, communication skills needed in effective clinical information provision, a need for individualised information and alternative information sources used to meet unmet needs. Regardless of cancer stage and treatment, men with prostate cancer and their carers found information regarding common and burdensome adverse effects of prostate cancer treatment particularly lacking, and their ongoing and changing information needs often overlooked. They needed information delivered in a compassionate and individually tailored manner, considering content, timing and emotional support within the context of their unique life circumstances. CONCLUSION: Clinicians often fail to recognise the need for or deliver patient-centred conversations about treatment, managing side effects and prognosis. The findings will be used to develop clinician-facing educational materials.


Assuntos
Neoplasias da Próstata , Comunicação , Humanos , Masculino , Neoplasias da Próstata/terapia , Pesquisa Qualitativa
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