RESUMO
BACKGROUND: Latino cancer caregivers are at risk of physical, mental, and emotional health issues. Sociocultural factors such as informational support, Anglo orientation, and spiritual practice may compound or protect against these risks. OBJECTIVE: The purpose of this research project was to examine self-efficacy as a mediator between sociocultural factors and health outcomes in Latino cancer caregivers. METHODS: This is a secondary analysis of baseline caregiver data from an experimental study testing two psychoeducational interventions in Latina individuals with breast cancer and their caregivers. Caregivers (N = 233) completed items assessing self-efficacy, informational support, Anglo orientation, spiritual practice, depression, and global health. Caregiver data were analyzed using hierarchical linear regression and mediation analysis. RESULTS: Spiritual well-being was not significantly associated with health outcomes or self-efficacy. In regression analysis, both informational support ( b = 0.32; 95% confidence interval [CI], 0.20 to 0.45; P < .001) and Anglo orientation ( b = 0.15; 95% CI, 0.11 to 2.48; P < .05) were significant predictors of global health, but informational support ( b = -0.43; 95% CI, -0.55 to -0.30; P < .001) was the only significant predictor of depression. There were indirect relationships through self-efficacy for symptom management for both informational support and Anglo orientation and health outcomes. CONCLUSIONS: Informational support and Anglo orientation were significantly related to health outcomes directly and indirectly through self-efficacy in Latino cancer caregivers. IMPLICATIONS FOR PRACTICE: Informational support through the health system and community, when provided with attention to culture and Spanish language translation, can increase Latino cancer caregivers' self-efficacy to care for themselves and improve health outcomes.
Assuntos
Neoplasias da Mama , Cuidadores , Hispânico ou Latino , Autoeficácia , Feminino , Humanos , Acesso à Informação/psicologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Cuidadores/psicologia , Cultura , Hispânico ou Latino/psicologia , Saúde Mental , Fatores Sociais , Apoio SocialRESUMO
INTRODUCTION: With the digitalisation of patient medical records, providing patients with free access to their electronic medical record (EMR) has become an important topic of debate in many countries. Recent studies show that the quality of treatment in healthcare may be improved by encouraging patients to take an active part in their care. Providing patients with access to their EMR may also improve the patient-doctor relationship, adherence to treatment and patient satisfaction. In June 2015, the Swiss government passed a law to set the framework for a nationally coordinated EMR system. A major stipulation to this legislation is that patients and doctors must consent to having an open access EMR (oEMR). The aim of this study was to assess patients' attitudes towards an oEMR. METHODS: Consecutive patients attending the outpatient clinic of our department within two months were included in this study. Patients were asked to complete a questionnaire consisting of 43 items, including amongst others disease characteristics, their expectations regarding an oEMR and its implementation. This study was approved by the ethics committee of the Canton Zurich (BASEC-Nr. Req-2016-00383). RESULTS: 149 patients were included with a mean age of 52 (standard deviation 17) years. 42% suffered from abdominal diseases (benign or malignant), 26% from hernias, and 17% from anorectal disorders. 76% of the responding patients fully supported an oEMR. Among all items, a higher educational degree (odds ratio [OR] 55, 95% confidence interval [CI] 39-70), patients with general or half-private insurance (OR 10, 95% CI 0.99-100) and patients with suspected cancer (OR 6, 95% CI 0.93-42) were independent predictors for a positive attitude regarding an oEMR on multivariate analysis. CONCLUSION: To our knowledge, this is the first study conducted in a hospital in the German-speaking part of Switzerland evaluating patients' opinions regarding an oEMR. Overall a large majority of the patients support an oEMR. Patients with cancer, a higher educational degree and general or half-private insured patients were more likely to support an oEMR. An important next step would be to conduct studies investigating opinions of medical professionals during the implementation of an oEMR.
Assuntos
Acesso à Informação/psicologia , Procedimentos Cirúrgicos do Sistema Digestório , Registros Eletrônicos de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Adolescente , Humanos , Satisfação do Paciente , Relações Médico-Paciente , SuíçaRESUMO
BACKGROUND: Because of the global spread of coronavirus disease 2019 (COVID-19), oncology departments across the world have rapidly adapted their cancer care protocols to balance the risk of delaying cancer treatments and the risk of COVID-19 exposure. COVID-19 and associated changes may have an impact on the psychosocial functioning of patients with cancer and survivors. This study was designed to determine the impact of the COVID-19 pandemic on young people living with and beyond cancer. METHODS: In this cross-sectional study, 177 individuals, aged 18 to 39 years, were surveyed about the impact of COVID-19 on their cancer care and psychological well-being. Participants also reported their information needs with respect to COVID-19. Responses were summarized with a content analysis approach. RESULTS: This was the first study to examine the psychological functioning of young patients and survivors during the first weeks of the COVID-19 pandemic. A third of the respondents reported increased levels of psychological distress, and as many as 60% reported feeling more anxious than they did before COVID-19. More than half also wanted more information tailored to them as young patients with cancer. CONCLUSIONS: The COVID-19 pandemic is rapidly evolving and changing the landscape of cancer care. Young people living with cancer are a unique population and might be more vulnerable during this time in comparison with their healthy peers. There is a need to screen for psychological distress and attend to young people whose cancer care has been delayed. As the lockdown begins to ease, the guidelines about cancer care should be updated according to this population's needs.
Assuntos
COVID-19 , Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Neoplasias/terapia , Acesso à Informação/psicologia , Adolescente , Adulto , Ansiedade/psicologia , COVID-19/psicologia , Estudos Transversais , Feminino , Humanos , Internet , Masculino , Satisfação do Paciente , Estresse Psicológico , Reino Unido , Adulto JovemRESUMO
BACKGROUND: There has been comparatively little patient information about bronchiectasis, a chronic lung disease with rising prevalence. Patients want more information, which could improve their understanding and self-management. A novel information resource meeting identified needs has been co-developed in prior work. We sought to establish the feasibility of conducting a multi-centre randomised controlled trial to determine effect of the information resource on understanding, self-management and health outcomes. METHODS/DESIGN: We conducted an unblinded, single-centre, randomised controlled feasibility trial with two parallel groups (1:1 ratio), comparing a novel patient information resource with usual care in adults with bronchiectasis. Integrated qualitative methods allowed further evaluation of the intervention and trial process. The setting was two teaching hospitals in North East England. Participants randomised to the intervention group received the information resource (website and booklet) and instructions on its use. Feasibility outcome measures included willingness to enter the trial, in addition to recruitment and retention rates. Secondary outcome measures (resource use and satisfaction, quality of life, unscheduled healthcare presentations, exacerbation frequency, bronchiectasis knowledge and lung function) were recorded at baseline, 2 weeks and 12 weeks. RESULTS: Sixty-two participants were randomised (control group = 30; intervention group = 32). Thirty-eight (61%) were female, and the participants' median age was 65 years (range 15-81). Median forced expiratory volume in 1 s percent predicted was 68% (range 10-120). Sixty-two of 124 (50%; 95% CI, 41-59%) of potentially eligible participants approached were recruited. Sixty (97%) of 62 participants completed the study (control group, 29 of 30 [97%]; 95% CI, 83-99%; 1 unrelated death; intervention group, 31 [97%] of 32; 95% CI, 84-99%; 1 withdrawal). In the intervention group, 27 (84%) of 32 reported using the information provided, and 25 (93%) of 27 of users found it useful, particularly the video content. Qualitative data analysis revealed acceptability of the trial and intervention. Web analytics recorded over 20,000 page views during the 16-month study period. CONCLUSION: The successful recruitment process, high retention rate and study form completion rates indicate that it appears feasible to conduct a full trial based on this study design. Worldwide demand for online access to the information resource was high. TRIAL REGISTRATION: ISRCTN Registry, ISRCTN84229105. Registered on 25 July 2014.
Assuntos
Acesso à Informação/psicologia , Bronquiectasia/tratamento farmacológico , Bronquiectasia/epidemiologia , Educação de Pacientes como Assunto/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Bronquiectasia/fisiopatologia , Bronquiectasia/psicologia , Estudos de Casos e Controles , Progressão da Doença , Inglaterra/epidemiologia , Estudos de Viabilidade , Feminino , Recursos em Saúde , Humanos , Comportamento de Busca de Informação/fisiologia , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Prevalência , Pesquisa Qualitativa , Qualidade de Vida , Projetos de Pesquisa , Autogestão/educação , Adulto JovemRESUMO
INTRODUCTION: Open access (OA) publishing rates have risen dramatically in the biomedical sciences in the past decade. However, few studies have focused on the publishing activities and attitudes of early career researchers. The aim of this study was to examine current publishing activities of clinical and research fellows and their perceptions of OA publishing and public access. METHODS: This study employed a mixed methods approach. Data on publications authored by Memorial Sloan Kettering Cancer Center fellows between 2013 and 2018 were collected via an in-house author profile system and citation indexes. Journals were categorized according to SHERPA/RoMEO classifications. In-person and telephone interviews were conducted with fifteen fellows to discern their perceptions of OA publishing. RESULTS: The total percentage of fellows' publications that were freely available OA was 28.6%, with a relatively flat rate between 2013 and 2018. Publications with fellows as first authors were significantly more likely to be OA. Fellows cited high article processing charges (APCs) and perceived lack of journal quality or prestige as barriers to OA publishing. Fellows generally expressed support for the National Institutes of Health (NIH) public access policy. CONCLUSIONS: While the fellows in this study acknowledged the potential of OA to aid in research dissemination, they also expressed hesitation to publish OA related to confusion surrounding legitimate OA and predatory publications and frustration with APCs. Fellows supported the NIH public access policy and accepted it as part of their research process. Health sciences information professionals could potentially leverage this acceptance of public access to advocate for OA publishing.
Assuntos
Acesso à Informação/psicologia , Pesquisa Biomédica/métodos , Pesquisa Biomédica/tendências , Publicação de Acesso Aberto/estatística & dados numéricos , Publicação de Acesso Aberto/tendências , Pesquisadores/psicologia , Pesquisadores/tendências , Adulto , Pesquisa Biomédica/estatística & dados numéricos , Feminino , Previsões , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisadores/estatística & dados numéricos , Relatório de Pesquisa/tendências , Estados UnidosRESUMO
It is essential for at-risk women to be screened for breast and cervical cancer in a timely manner. Despite a growing interest in the role of health information technology including personal health records (PHRs) to improve quality and outcomes in health care, less is known about the effectiveness of PHRs to promote breast and cervical cancer screening among women with a family history of cancer (FHC). We examined the association between access to PHRs and the use of a recommended mammography and a Pap smear testing among women with a FHC using data from the 2015 Health Information National Trends Survey (HINTS 4-cycle 4) and the 2016 Area Health Resource Files. The study sample was comprised of 1250 women aged 20-75 years with a FHC, a subsample of 3677 survey respondents. Of the 1250 women, 64.96% received a mammogram, and 75.44% underwent a Pap testing. Among women with a FHC, there was a significant and positive association between access to PHRs and the receipt of a mammogram (adjusted odds ratio (aOR) 4.20; 95% CI, 2.23-7.94; p < .001) and a Pap testing (aOR 3.13; 95% CI, 1.56-6.28; p < .01). Our findings suggest that at-risk women can benefit from greater access to PHRs. Policymakers should consider incentivizing providers and healthcare organizations who provide access to PHRs to their patients as well as developing programs that can help improve access to PHRs among at-risk women.
Assuntos
Neoplasias da Mama/diagnóstico , Detecção Precoce de Câncer/estatística & dados numéricos , Registros de Saúde Pessoal/psicologia , Mamografia/estatística & dados numéricos , Teste de Papanicolaou/estatística & dados numéricos , Neoplasias do Colo do Útero/diagnóstico , Esfregaço Vaginal/estatística & dados numéricos , Acesso à Informação/psicologia , Adulto , Idoso , Neoplasias da Mama/prevenção & controle , Neoplasias da Mama/psicologia , Detecção Precoce de Câncer/psicologia , Feminino , Humanos , Mamografia/psicologia , Pessoa de Meia-Idade , Teste de Papanicolaou/psicologia , Inquéritos e Questionários , Neoplasias do Colo do Útero/prevenção & controle , Neoplasias do Colo do Útero/psicologia , Esfregaço Vaginal/psicologia , Adulto JovemRESUMO
BACKGROUND: The shift from inpatient to outpatient and community cancer care means that more patients with cancer need to manage their condition at home, without the direct supervision of their clinician. Subsequently, research has reported that many patients with cancer have unmet information needs during their illness. Mobile devices, such as mobile phones and tablet computers, provide an opportunity to deliver information to patients remotely. Before designing an app intervention to help patients with cancer to meet their information needs, in-depth qualitative research is required to gain an understanding of the views of the target users. OBJECTIVE: We aimed to develop an app intervention to help patients meet their illness-related information needs in noninpatient settings. This study explored the information needs of patients with cancer and their preferences for an app and desired app features. Specifically, the perceived acceptability of an app, desired app features, and the potential benefits and disadvantages of, and barriers to, an app were explored. METHODS: Qualitative, one-on-one semistructured interviews were conducted with patients with urological, colorectal, breast, or gynecological cancers (N=23) across two hospitals in South Wales. Interviews were audio-taped, transcribed, and analyzed using a thematic analysis. RESULTS: Findings indicated that barriers to information exchange and understanding in consultations, and identification of reliable information sources between consultations, appeared to contribute to patients' unmet information needs. Consequently, app feature suggestions included a question prompt list, a glossary of cancer terms, a resources feature, and a contacts feature. Anticipated benefits of this type of app included a more informed patient, improved quality of life, decreased anxiety, and increased confidence to participate in their care. The anticipated barriers to app use are likely to be temporary or can be minimized with regard to these findings during app development and implementation. CONCLUSIONS: This study highlights the desire of patients with cancer for an app intervention to help them meet their information needs during and between consultations with their clinicians. This study also highlights the anticipated acceptability and benefits of this type of intervention; however, further research is warranted.
Assuntos
Telefone Celular/instrumentação , Comportamento de Busca de Informação/fisiologia , Aplicativos Móveis/normas , Neoplasias/psicologia , Preferência do Paciente/estatística & dados numéricos , Acesso à Informação/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/epidemiologia , Ansiedade/psicologia , Feminino , Troca de Informação em Saúde/provisão & distribuição , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Aplicativos Móveis/provisão & distribuição , Neoplasias/epidemiologia , Pesquisa Qualitativa , Qualidade de Vida , Autoimagem , Reino Unido/epidemiologia , Adulto JovemRESUMO
Patients' ability to access their provider's clinical notes (OpenNotes) has been well received and has led to greater transparency in health systems. However, the majority of this research has occurred in primary care, and little is known about how patients' access to notes is used in oncology. This study aims to understand oncologists' perceptions of OpenNotes, while also establishing a baseline of the linguistic characteristics and patterns used in notes. Data from 13 in-depth, semistructured interviews with oncologists were thematically analyzed. In addition, the Linguistic Inquiry and Word Count (LIWC) program evaluated over 200 clinician notes, measuring variables encompassing emotions, thinking styles, social concerns, and parts of speech. Analysis from LIWC revealed that notes contained negative emotional tone, low authenticity, high clout, and high analytical writing. Oncologists' use of stigmatized and sensitive words, such as "obese" and "distress," was mainly absent. Themes from interviews revealed that oncologists were uncertain about patients' access to their notes and may edit their notes to avoid problematic terminology. Despite their reluctance to embrace OpenNotes, they envisioned opportunities for an improved patient-provider relationship due to patients initiating interactions from viewing notes. Oncologists believe notes are not intended for patients and altering their content may compromise the integrity of the note. This study established a baseline for further study to compare notes pre-implementation to post-implementation. Further analysis will clarify whether oncologists are altering the style and content of their notes and determine the presence of patient-centered language.
Assuntos
Acesso à Informação/psicologia , Atitude do Pessoal de Saúde , Registros Eletrônicos de Saúde , Comunicação em Saúde , Oncologistas/psicologia , Feminino , Comunicação em Saúde/métodos , Humanos , Internet , Entrevistas como Assunto , Linguística , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Percepção , Relações Médico-Paciente , Padrões de Prática MédicaRESUMO
BACKGROUND: The treatment of upper gastrointestinal cancer (UGIC) patients is complex. Patients are often elderly, comorbid as well as nutritionally depleted and treatment involves multimodality therapy incorporating chemotherapy, radiation therapy and surgery. The pre-treatment information requirements of UGIC patients are not clear but crucially important in ensuring they complete treatment successfully. METHODS: A systematic review of the English language literature was performed to determine the specific information needs of patients with UGIC. RESULTS: Following abstract review and comprehensive analysis six articles were included. UGIC patients nominated information regarding post-operative recovery, quality of life, expected survival, management of post-operative symptoms and coping strategies for insurance and financial issues, relationships and family as being most important to them. Patients' families nominated information on the effects of diagnosis on patient well-being over the ensuing months and detailed information on available support services as being most important. One-on-one consultations with senior medical staff were the preferred method of information transfer followed by web-based information services. CONCLUSIONS: For effective treatment of UGIC patients, physicians and surgeons must address issues pertaining to quality of life, finance and relationships and may require specific training, or administrative support, in these areas.
Assuntos
Acesso à Informação/psicologia , Neoplasias Gastrointestinais/epidemiologia , Neoplasias Gastrointestinais/psicologia , Adaptação Psicológica , Adulto , Neoplasias Gastrointestinais/mortalidade , Neoplasias Gastrointestinais/patologia , Humanos , Consentimento Livre e Esclarecido/psicologia , Acesso à Internet , Intervenção Baseada em Internet/tendências , Qualidade de VidaRESUMO
OBJECTIVE: To determine whether providing individualized predictions of health outcomes to men on active surveillance (AS) alleviates cancer-related anxiety and improves risk understanding. MATERIALS AND METHODS: We consecutively recruited men from our large, institutional AS program before (nâ¯=â¯36) and after (nâ¯=â¯31) implementation of a risk prediction tool. Men in both groups were surveyed before and after their regular visits to assess their perceived cancer control, biopsy-specific anxiety, and burden from cancer-related information. We compared pre-/post-visit differences between men who were and were not shown the tool using two-sample t-tests. Satisfaction with and understanding of the predictions were elicited from men in the intervention period. RESULTS: Men reported a relatively high level of cancer control at baseline. Men who were not shown the tool saw a 6.3 point increase (scaled from 0 to 100) in their perceived cancer control from before to after their visit whereas men who were shown the tool saw a 12.8 point increase, indicating a statistically significant difference between groups (pâ¯=â¯.04). Biopsy-specific anxiety and burden from cancer information were not significantly different between groups. Men were satisfied with the tool and demonstrated moderate understanding. CONCLUSION: Providing individualized predictions to men on AS helps them better understand their cancer risk and should be considered at other clinical sites.
Assuntos
Ansiedade , Atitude Frente a Saúde , Neoplasias da Próstata , Acesso à Informação/psicologia , Idoso , Ansiedade/diagnóstico , Ansiedade/fisiopatologia , Ansiedade/prevenção & controle , Efeitos Psicossociais da Doença , Indicadores Básicos de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Vigilância da População , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/psicologia , Medição de Risco/métodos , Autoimagem , Estados UnidosRESUMO
To assess the effectiveness of a purpose-built information-based website to reduce distress among young women with breast cancer. A total of 337 participants (Intervention Group [IG] n = 202; Usual Care Group [UCG] n = 177) returned the completed baseline questionnaires (T1). Details regarding accessing the website were provided to IG participants. Follow-up questionnaires were completed: (a) 3 months (T2) and (b) 6 months after baseline (T3). Outcomes included anxiety and depression (primary outcomes), quality of life (QoL) and unmet information needs. About 70% of the IG accessed the website, typically only once (median: 1, range 1-15), spending a median of 19 min (range: 1-315) on the site. Mean levels of anxiety and depression did not differ between the two groups at T1, T2 or T3. While improvement in total QoL was greater in the IG than UCG between T1 and T2, QoL scores did not differ between groups at T3. The number of unmet needs did not differ between the two groups at T3. The intervention was not effective in reducing anxiety, or depression in this group of women. As a high number of unmet needs were identified, other strategies for addressing these needs of young women with breast cancer are needed.
Assuntos
Acesso à Informação/psicologia , Ansiedade/psicologia , Neoplasias da Mama/psicologia , Depressão/psicologia , Internet , Estresse Psicológico/psicologia , Adulto , Feminino , Humanos , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Qualidade de Vida/psicologiaRESUMO
PURPOSE: To explore the barriers and experiences of accessing information for women who have received genetic risk assessment/testing results for breast cancer (BC) and are considering a bilateral prophylactic mastectomy (BPM) and, exploring participants' preferences concerning information and support needs. METHODS: A qualitative retrospective study guided by interpretative phenomenological analysis was utilised. Semi-structured interviews were conducted with forty-six women who were either considering BPM or had already undergone the surgery. RESULTS: Three themes identified barriers to accessing information; difficulties accessing information, inconsistent information and clinical focus/medicalized information. A fourth theme - preferences of information and support needs, identified three subthemes; these were, psychological support, clearly defined processes and photos of mastectomies/reconstruction surgeries. CONCLUSIONS: Barriers to accessing information appeared to be widespread. A lack of integrated services contributed to inconsistent information, and medicalized terminology/clinical focus of consultations further complicated understanding. Preferences for information include clearly defined processes, so women know the pathways after confirmation of familial BC risk. Clinical implications include a multidisciplinary team approach, and a protocol that reflects current practice.
Assuntos
Acesso à Informação/psicologia , Neoplasias da Mama/psicologia , Educação de Pacientes como Assunto , Mastectomia Profilática/psicologia , Adulto , Neoplasias da Mama/genética , Neoplasias da Mama/prevenção & controle , Tomada de Decisões , Feminino , Humanos , Satisfação do Paciente , Mastectomia Profilática/métodos , Pesquisa Qualitativa , Estudos Retrospectivos , Apoio Social , Adulto JovemRESUMO
OBJECTIVE: Changes perceived as both positive (eg, posttraumatic growth [PTG]) and negative (eg, posttraumatic stress symptoms [PTSS]) have been associated with intensive Internet use among breast cancer survivors. In this multicenter study, we analyzed the role of PTG and PTSS on the amount of time spent looking for online cancer information, its content, and its psychological impact. METHODS: Posttraumatic stress symptoms and PTG were assessed in 182 breast cancer survivors by using the Post-traumatic Stress Disorder Checklist and Post-traumatic Growth Inventory questionnaires. Subjects also completed a questionnaire about their behavior when looking for online illness-related information (ie, time spent, type of contents, and psychological impact). RESULTS: Posttraumatic stress symptoms positively correlated with the amount of time spent looking for cancer-related information, including both medical and psychosocial content. By contrast, PTG showed no relationships with the amount of time, but with a predominant search for cancer-related psychosocial information. The psychological impact of online information was associated with participants' levels of PTG and/or PTSS. Whereas PTG was related to a decrease of women's hope, PTSS was linked to the perception of being less conscious or inadequately informed about the illness, thereby increasing feelings of distress. CONCLUSIONS: Posttraumatic stress symptoms and PTG show relationships with the amount of time spent online, the type of information accessed online, and the psychological impact of Internet use. Health professionals should prescribe online information according to the psychological response to cancer. There is a need for professional-led online resources to provide patients with timely information as well as support sites to facilitate psychological adjustment.
Assuntos
Acesso à Informação/psicologia , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Comportamento de Busca de Informação , Transtornos de Estresse Pós-Traumáticos/psicologia , Adaptação Psicológica , Adulto , Atitude Frente a Saúde , Neoplasias da Mama/terapia , Ajustamento Emocional , Feminino , Esperança , Humanos , Internet , Pessoa de Meia-Idade , Crescimento Psicológico Pós-Traumático , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Inquéritos e QuestionáriosRESUMO
PURPOSE: Women with advanced breast cancer (ABC) face significant adjustment challenges, yet few resources provide them with information and support, and attendance barriers can preclude access to face-to-face psychosocial support. This paper reports on two qualitative studies examining (i) whether information and support-seeking preferences of women with ABC could be addressed in an online intervention, and (ii) how an existing intervention for patients with early stage cancer could be adapted for women with ABC. METHODS: Women with ABC participated in telephone interviews about their information and support-seeking preferences (N = 21) and evaluated an online intervention focused on early-stage cancer (N = 15). Interviews were transcribed and underwent thematic analysis using the framework method to identify salient themes. RESULTS: Participants most commonly sought medical, lifestyle-related, and practical information/support; however, when presented with an online intervention, participants most commonly gave positive feedback on content on coping with emotional distress. Difficulty finding information and barriers to using common sources of information/support including health professionals, family and friends, and peers were reported; however, some women also reported not wanting information or support. All participants evaluating the existing intervention gave positive feedback on various components, with results suggesting an online intervention could be an effective means of providing information/support to women with ABC, given improved specificity/relevance to ABC and increased tailoring to individual circumstances and preferences. CONCLUSIONS: Adaptation of an existing online intervention for early stage cancer appears to be a promising avenue to address the information and support needs of women with ABC.
Assuntos
Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Necessidades e Demandas de Serviços de Saúde , Internet , Educação de Pacientes como Assunto , Sistemas de Apoio Psicossocial , Acesso à Informação/psicologia , Adaptação Psicológica , Adulto , Idoso , Neoplasias da Mama/epidemiologia , Progressão da Doença , Feminino , Necessidades e Demandas de Serviços de Saúde/normas , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/normas , Grupo Associado , TelemedicinaRESUMO
BACKGROUND: Individuals affected by cancer report a need for information about fertility from health care professionals (HCPs), in order to inform decision making and alleviate anxiety. However, there is evidence that many health professionals do not engage in such discussions. METHOD: A mixed method design was used to examine the construction and subjective experience of communication with health professionals about fertility in the context of cancer, from the perspective of patients. A survey was completed by 693 women and 185 men, across a range of cancer tumour types and age groups, and in-depth one-to-one interviews conducted with a purposively selected subsample of survey respondents, 61 women and 17 men. The chi square test for independence was used to test for group differences between women and men on closed survey items. Thematic analysis was used to examine the open ended survey responses and interviews. RESULTS: Significantly more women (57%, n = 373) than men (46%, n = 80) (X2(2517) = 6.54, p = .011) reported that they had discussed fertility with a HCP since diagnosis of cancer. Satisfaction with the discussion was reported by 65% (n = 242) of women and 69% (n = 54) (ns) of men. This discussion was reported to have been initiated by the patient or their partner in 44% (n = 165) of women and 47% (n = 37) (ns) of men. In the interviews and open ended surveys three themes were identified: Feeling heard and informed about fertility after cancer: Positive experiences of HCP communication; "I was never given full disclosure": HCP silence or reticence about discussing fertility after cancer, including the sub-theme "Their primary concern is getting me cancer free": Constructions of absence of fertility communication by HCPs; and Confusion and lack of compassion: Unsatisfactory information provision about fertility and cancer. CONCLUSION: Discussion with a HCP about fertility concerns, and satisfaction with the discussion, was associated with reports of lower patient distress, greater knowledge and understanding of the consequences of cancer on fertility, involvement in the decision making process about fertility preservation, and satisfaction with health care.
Assuntos
Acesso à Informação , Atitude do Pessoal de Saúde , Comunicação , Preservação da Fertilidade , Pessoal de Saúde , Neoplasias/terapia , Relações Profissional-Paciente , Acesso à Informação/psicologia , Adulto , Comportamento , Tomada de Decisões , Emoções , Feminino , Fertilidade/fisiologia , Preservação da Fertilidade/métodos , Preservação da Fertilidade/psicologia , Pessoal de Saúde/psicologia , Pessoal de Saúde/normas , Necessidades e Demandas de Serviços de Saúde/normas , Humanos , Infertilidade/etiologia , Infertilidade/prevenção & controle , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/psicologia , Percepção , Personalidade , Inquéritos e QuestionáriosRESUMO
Patients' access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this article is to provide in-depth understanding of cancer patients' attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching e-Health services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians, the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital.
Assuntos
Acesso à Informação/psicologia , Registros Eletrônicos de Saúde/normas , Neoplasias/psicologia , Acesso dos Pacientes aos Registros/normas , Acessibilidade aos Serviços de Saúde/normas , Humanos , Internet , Entrevistas como Assunto/métodos , Neoplasias/complicações , Acesso dos Pacientes aos Registros/psicologia , Participação do Paciente/métodos , Relações Médico-Paciente , Pesquisa QualitativaRESUMO
CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition. OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives. METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding three months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed-response items. RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (one missing response). Seventy-six parents (88%) answered free-response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life. CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding three months. Although news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.
Assuntos
Acesso à Informação/psicologia , Proteção da Criança/psicologia , Neoplasias/psicologia , Relações Pais-Filho , Pais/psicologia , Qualidade de Vida/psicologia , Revelação da Verdade , Adulto , Criança , Saúde da Criança/classificação , Saúde da Criança/estatística & dados numéricos , Proteção da Criança/estatística & dados numéricos , Pré-Escolar , Feminino , Humanos , Masculino , Relações Profissional-Família , Adulto JovemRESUMO
BACKGROUND: Withholding information from cancer patients is a common practice in many Asian countries, including China, Japan, and Singapore, as well as in some Western countries, such as Spain, Greece, and Italy. Much research has investigated why doctors withhold information from cancer patients generally, both in the West and the East, but little research has been done on specifically why Chinese doctors withhold such information. METHODS: Three focus group interviews were conducted with a total of 16 oncologists in China. The interviews were recorded, transcribed, and translated. Qualitative data were analyzed using systematic text condensation. RESULTS: The result of this study revealed numerous circumstances that can lead to non-disclosure of cancer-related information. Many of these circumstances have been described in previous studies about non-disclosure in other countries. We found two additional circumstances that have not been described in previous literature and might therefore expand our current knowledge about this phenomenon; they are contradiction between laws and fear for personal safety. CONCLUSION: Numerous circumstances can lead to non-disclosure of cancer-related information. This study found two additional circumstances that might lead to non-disclosure. The findings of this study suggest further assessment and clarification about the laws that govern doctor-patient communication and that action should be taken to ensure safe working environments for Chinese oncologists.