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Qualitative assessments of researchers are resource-intensive, untenable in nonmeritocratic settings, and error-prone. Although often derided, quantitative metrics could help improve research practices if they are rigorous, field-adjusted, and centralized.
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Pesquisadores , Humanos , Pesquisa QualitativaRESUMO
Use of rigorous study design methods and transparent reporting in publications are 2 key strategies proposed to improve the reproducibility of preclinical research. Despite promotion of these practices by funders and journals, assessments suggest uptake is low in preclinical research. Thirty preclinical scientists were interviewed to better understand barriers and enablers to rigorous design and reporting. The interview guide was informed by the Theoretical Domains Framework, which is a framework used to understand determinants of current and desired behavior. Four global themes were identified; 2 reflecting enablers and 2 reflecting barriers. We found that basic scientists are highly motivated to apply the methods of rigorous design and reporting and perceive a number of benefits to their adoption (e.g., improved quality and reliability). However, there was varied awareness of the guidelines and in implementation of these practices. Researchers also noted that these guidelines can result in disadvantages, such as increased sample sizes, expenses, time, and can require several personnel to operationalize. Most researchers expressed additional resources such as personnel and education/training would better enable the application of some methods. Using existing guidance (Behaviour Change Wheel (BCW); Expert Recommendations for Implementing Change (ERIC) project implementation strategies), we mapped and coded our interview findings to identify potential interventions, policies, and implementation strategies to improve routine use of the guidelines by preclinical scientists. These findings will help inform specific strategies that may guide the development of programs and resources to improve experimental design and transparent reporting in preclinical research.
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Projetos de Pesquisa , Reprodutibilidade dos Testes , Pesquisa QualitativaRESUMO
INTRODUCTION: Disparities in early palliative care (PC) access for Black and Latina women with advanced breast cancer (ABC) persist. This study elicited qualitative feedback from patients with ABC and health professionals to adapt a community navigator-led early PC program called ACCESS to improve PC access and supportive care outcomes for Black and Latina women with ABC. METHODS: This was a formative evaluation study using a community-engaged approach. Guided by a community advisory board, qualitative interviews were conducted with Black and Latina women with ABC (N = 20) and interdisciplinary health professionals and patient navigators (N = 20) to elicit feedback on the content, delivery, and format of ACCESS, a navigator-delivered early PC intervention to improve PC access and outcomes. Thematic analysis was conducted using inductive coding followed by deductive analysis using the Consolidated Framework for Implementation Research framework to guide intervention adaptation. RESULTS: Findings indicate that ACCESS addresses the early PC needs of Black and Latina women with ABC, yet needs to embed flexibility per patient preferences. Additionally, PC should be introduced as supportive care to enhance acceptability. Navigators emphasized fostering awareness and access to resources, which are crucial for patients' well-being. Strong interdisciplinary relationships and care coordination are essential for embedding ACCESS. Recognizing patient individuality, addressing historical and cultural factors, and ensuring navigators are empathetic, well-trained, and culturally aligned with patients were highlighted as pivotal for the intervention's success. CONCLUSIONS: These findings will inform the adaptation of ACCESS for feasibility and preliminary efficacy testing.
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Negro ou Afro-Americano , Neoplasias da Mama , Acessibilidade aos Serviços de Saúde , Hispânico ou Latino , Cuidados Paliativos , Navegação de Pacientes , Humanos , Feminino , Neoplasias da Mama/terapia , Neoplasias da Mama/etnologia , Neoplasias da Mama/psicologia , Hispânico ou Latino/psicologia , Cuidados Paliativos/métodos , Navegação de Pacientes/organização & administração , Pessoa de Meia-Idade , Idoso , Adulto , Disparidades em Assistência à Saúde/etnologia , Pesquisa Qualitativa , BrancosRESUMO
Despite robust supporting evidence, around a third of eligible surgical patients do not receive tranexamic acid (TXA). Effective strategies based on an understanding of clinical behaviour are needed to increase use and improve patient outcomes. We conducted semi-structured interviews with clinicians involved in perioperative care to explore perceived influences on TXA use. We identified key influences on practice using the theoretical domains framework. We matched these to behaviour change techniques and evidence-informed implementation intervention components. Across 22 interviews, we identified eight key influences within three overarching themes of capability, opportunity and motivation. Capability influences included the clinical context and variable familiarity with TXA. Opportunity concerned the availability of both TXA and checklists to support decision-making and whether TXA use was consistent with professional expectations and perceived responsibilities. Motivation concerned confidence in administering TXA, perceived benefits and risks and training received around potential risk factors. These influences varied across participants and specialities. Our resulting proposed implementation strategy included training, clinical prompts, comparative performance feedback and opinion leadership supported by specialty-specific guidance. Any strategy to increase TXA use that improves knowledge and skills without addressing wider influences on clinical behaviour is only likely to meet with limited success.
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Ácido Tranexâmico , Ácido Tranexâmico/uso terapêutico , Humanos , Antifibrinolíticos/uso terapêutico , Pesquisa Qualitativa , Feminino , Masculino , Entrevistas como Assunto , Perda Sanguínea Cirúrgica/prevenção & controle , Assistência Perioperatória/métodos , Padrões de Prática MédicaRESUMO
BACKGROUND: Patients with advanced chronic kidney disease requiring initiation of kidney replacement therapy (KRT) are frequently asked to enact complex management plans. Treatment burden has been defined as the effect of healthcare workload and the capacity a person has to manage this workload has on wellbeing. The aim of this review is to examine the experience of healthcare workload and the factors that affect capacity to meet that workload for people transitioning onto KRT for the first time, using a framework synthesis of published literature informed by normalisation process theory (NPT) and theory of patient capacity (TPC). METHODS: Medline, Scopus and CINAHL were systematically searched with manual citation and reference searching. Studies were included if meeting the criteria of adults aged 18 or over transitioning for the first time onto any modality of KRT (haemodialysis, peritoneal dialysis or kidney transplantation), using qualitative methodologies to describe any aspect of experiences of healthcare workload or any factors that affect capacity to manage workload were included. Abstracts and full papers were independently screened by two reviewers and data extraction and quality appraisal were also independently conducted by two reviewers. Qualitative data were analysed using framework synthesis informed by NPT and TPC. RESULTS: A total of 24,380 studies were screened, 406 full texts were reviewed and 18 studies were included. There were four broad categories of workload described: making sense of KRT, working out what to do and how to do it, meeting the challenges of KRT, and reflecting on work done. Patient capacity influenced the experience of all types of workload and the treatment burden generated by the work. CONCLUSIONS: Transitioning onto KRT is a period of very high healthcare workload and potentially high treatment burden. The relationship between healthcare workload and capacity to handle workload is complex, multifactorial and changes over time. By better understanding workload, capacity and burden during transition, we can develop better ways of measuring these important aspects of care and develop interventions to reduce treatment burden in those transitioning onto KRT.
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Terapia de Substituição Renal , Carga de Trabalho , Humanos , Terapia de Substituição Renal/métodos , Pesquisa Qualitativa , Insuficiência Renal Crônica/terapiaRESUMO
BACKGROUND: Hospitals fulfill an important exemplary role in promoting health and well-being. It is therefore crucial to have a supportive food environment that stimulates healthy and sustainable food choices of patients, staff, and visitors. This qualitative study aimed to identify factors influencing the implementation of long-lasting actions to enhance the healthiness and sustainability of the food environment in the hospital setting in the Netherlands, from the perspective of different stakeholders. METHODS: Semi-structured interviews were conducted in hospitals realizing a healthy and sustainable food environment. Verbatim transcripts were thematically analyzed, guided by the Consolidated Framework for Implementation Research. Data were organized and interpreted per theme as well as stakeholder group. RESULTS: In three hospitals, 29 semi-structured interviews were conducted with 30 stakeholders from a wide spectrum of stakeholder groups (i.e., facility professionals, healthcare professionals, project coordinators, and board of directors). Identified themes and subthemes were: 1 the outer setting, with momentum for change, government-established policies and guidelines, collaboration and networks outside the hospital, and caterers' and suppliers' food offerings, interests, and contracts; 2 the innovation domain, with familiarity and compliance with the TEH program; 3 support at all levels, achieving organizational buy-in with communication as a strategy, and end user interests; 4 the inner setting, with key priority in policy and having a vision, available resources, infrastructure within the hospital, ambassadors, and gradual process with continuous effort; and 5 the individual domain with personal drive. CONCLUSIONS: The results revealed an interplay of perceived factors that influence the enhancement of a healthy and sustainable food environment and underscored the importance of addressing various facilitators and barriers across multiple domains within and outside the hospital setting. To ensure successful integration of a healthy and sustainable food environment in hospitals, throughout the entire organization it is crucial to engage diverse stakeholders at all levels and address their barriers with tailored implementation strategies. We suggest verification of our findings in more hospitals.
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Serviço Hospitalar de Nutrição , Hospitais , Pesquisa Qualitativa , Países Baixos , Humanos , Serviço Hospitalar de Nutrição/normas , Participação dos Interessados , Entrevistas como Assunto , Promoção da Saúde/métodosRESUMO
BACKGROUND: Tecovirimat, an antiviral treatment for smallpox, was approved as a treatment for mpox by the European Medicines Agency in January 2022. Approval was granted under "exceptional circumstances" based on effectiveness found in pre-clinical challenge studies in animals and safety studies in humans showing minimal side effects. As clinical efficacy studies are still ongoing, there is currently limited information with regard to the acceptability of tecovirimat to treat mpox. The aim of this study is to understand prospective acceptability of use of tecovirimat as treatment for mpox. METHODS: A co-produced, qualitative, focus group study design was conducted with a theoretically informed sample of people from communities at higher risk and with experience of mpox illness. Thirteen participants took part: all self-identified as cisgender male, 1 self-identified as Black British, 1 as British Asian, 5 as White, 3 as White British, 3 as White Other. Inclusion criteria were as follows: experience of mpox illness; age 18 and over; living in the United Kingdom (UK); living in the UK during 2022 mpox outbreak. Focus groups were recorded, transcribed and thematically analysed using a combination inductive and deductive coding informed by the Treatment Acceptability Framework. RESULTS: Very few participants were aware of tecovirimat as a treatment option and none were offered it during their mpox illness. Key factors influencing acceptability found in this study were as follows: levels of trust in medicine; level of information; provider communication approach; quality of experience of mpox care. Marginalised communities at highest risk of mpox may have prior experience of structural discrimination which can greatly influence treatment acceptability. CONCLUSIONS: This exploratory study suggest that offering tecovirimat (or comparable emergency-licensed treatments) to people with mpox is acceptable, although uptake will depend on knowledge of mpox treatment options, trust in medicine and medical professionals and provision of relevant information and choice. To increase acceptability of such treatments, clinicians should ensure patients are aware of mpox symptom management options, including pain relief; acknowledge and address patient concerns upfront and within the context of non-stigmatising care; and communicate offers in a consistent and supportive manner in line with locally approved eligibility criteria and protocols at the time.
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Antivirais , Grupos Focais , Mpox , Humanos , Masculino , Adulto , Antivirais/uso terapêutico , Pessoa de Meia-Idade , Mpox/tratamento farmacológico , Reino Unido , Pesquisa Qualitativa , Aceitação pelo Paciente de Cuidados de Saúde , Adulto Jovem , Feminino , Benzamidas/uso terapêutico , Benzamidas/administração & dosagem , Estudos Prospectivos , Adolescente , FtalimidasRESUMO
BACKGROUND: The NHS App launched in 2019 as the 'digital front door' to the National Health Service in England with core features including General Practitioner (GP) appointment booking, repeat prescriptions, patient access to records and, later on, COVID-19 vaccination certification. Similar patient portals have been adopted in different formats and with variable levels of success. In this longitudinal study (2021-2023) we examined how the NHS App became implemented in the pandemic context and beyond. METHODS: We recruited 88 participants in 62 qualitative interviews and four focus groups. Participants included patients, carers, members of the public, clinical/non-clinical NHS staff from five GP practices (where we also conducted over 60 h of observations) across England, as well as other industry, policy and civil rights stakeholders. Document analysis also contributed to participant recruitment and data interpretation. Data collection and analysis was informed by the Non-Adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework. RESULTS: Our study identified the various ways in which complexity manifested as part of the implementation, use and roll-out of the NHS App. Patients had diverse (positive and negative) user experiences as the app evolved, with some of its features described as more useful than others (e.g. prescription ordering, COVID Pass). As the app primarily provided a gateway to general practice systems and infrastructures, not all features were available by default or consistently to all users, with information often appearing fragmented or system-facing (e.g. coded). NHS staff viewed the app as constituting core NHS infrastructure in the long term which made it appealing, even though initially there was less recognition of its immediate value. There was variable organisational capacity to enable implementation and to put in place processes and staff roles required to support patient adoption. Shifting emphasis towards in-person care, challenges with digital inclusion and controversies related to features such as patient access to own records further complicated roll-out. CONCLUSIONS: As the NHS App remains a complex innovation in a shifting landscape, it is clear ongoing work is needed to ensure its potential can be sustained to meet patient, service and policy needs. CLINICAL STUDY REGISTRATION: ISRCTN72729780.
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COVID-19 , Medicina Estatal , Humanos , Inglaterra , COVID-19/epidemiologia , Estudos Longitudinais , Aplicativos Móveis , Pesquisa Qualitativa , SARS-CoV-2 , Grupos Focais , Masculino , FemininoRESUMO
Although breast, cervical, endometrial, and ovarian cancers account for more than 43% of new cases in 2023 in Brazilian women, no national studies were found on the incidence, risk factors, and prevention of breast and gynecological neoplasms in lesbian women, causing the health needs of non-heterosexual women to go unnoticed by professionals. This study aims to identify and analyze the search for healthcare related to the prevention of breast/gynecological cancer among Brazilian lesbian cisgender women who have not had the disease. Seven lesbian women participated in this qualitative study. Semi-structured interviews were conducted and subsequently transcribed and analyzed following the reflexive thematic analysis approach and the theoretical framework of gender studies. Two thematic axes were constructed: gynecological appointments, which includes the subthemes follow-ups, types of exams, and struggles with the healthcare system, and meeting health professionals, which includes relationships with professionals, searching for professionals, discussing sexual orientation, and (un)preparedness. The participants in this study reported visiting a gynecologist at least once and doing preventive exams, although the frequency of these appointments varied for each woman. However, they highlighted that healthcare providers are not adequately prepared to address the needs of lesbian women and to talk about sexual orientation.
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Neoplasias da Mama , Minorias Sexuais e de Gênero , Humanos , Feminino , Brasil/epidemiologia , Adulto , Neoplasias da Mama/prevenção & controle , Neoplasias da Mama/epidemiologia , Pessoa de Meia-Idade , Homossexualidade Feminina , Neoplasias dos Genitais Femininos/prevenção & controle , Neoplasias dos Genitais Femininos/epidemiologia , Pesquisa QualitativaRESUMO
What does it take to become an adult in Africa? Life-span-development literature includes little exploration on this transition outside Western countries. A qualitative approach was used to identify locally relevant topics and variables in an understudied African context. Fifty 18- to 25-year-old Ovambo Namibians from rural and urban areas were interviewed. Results of reflexive thematic analysis suggest the significance of gender and birth order in defining adult roles and the completion of one's education as a new rite of passage. Full adult personhood means providing for and engaging with a larger community as well as one's children and extended family, reflecting the ongoing relevance of African communalism in today's society. Youth in Namibia, and likely in sub-Saharan Africa more broadly, balance traditional and contemporary demands as they come of age in a postindependence, globalizing society. Our findings reflect the centrality of community and the intermingled nature of agentic and communal values in this process.
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População Rural , Humanos , Adulto , Feminino , Masculino , Adulto Jovem , Namíbia , Adolescente , Pesquisa Qualitativa , África Subsaariana , Ordem de Nascimento , População UrbanaRESUMO
BACKGROUND: Three randomized controlled trials have demonstrated the efficacy of doxycycline for bacterial sexually transmitted infection postexposure prophylaxis (Doxy PEP). Few studies have assessed provider knowledge, attitudes, and practices (KAP) regarding Doxy PEP implementation. Between July of 2023 and January 2024, this study qualitatively assessed KAP and intention to prescribe Doxy PEP among health care providers in the New York City area. METHODS: In-depth, semistructured individual interviews were conducted with 18 health care provider key informants including physicians, nurse practitioners, and physician assistants from various practice settings. Transcripts were analyzed using inductive KAP codes, with additional deductive coding used to identify emergent subthemes. RESULTS: The following themes were identified: (1) STI Disparities, (2) Doxy PEP Experience, (3) Doxy PEP Benefits, (4) Doxy PEP Concerns, and (5) Doxy PEP Implementation. Doxy PEP knowledge was high, with all providers being aware and most (78%) having prescribed it to at least one patient at the time of interview. Providers were knowledgeable of factors contributing to high rates of STIs. Benefits included reducing STI anxiety. Concerns included contributing to antimicrobial resistance and impacts on microbiota. Practice implications included challenges getting Doxy PEP approved by the pharmacy. These factors were shown to affect Doxy PEP's perceived acceptability. CONCLUSIONS: To ensure that Doxy PEP is implemented safely and equitably, KAP factors that may influence provider decision making should be examined. Understanding providers' KAP and how they affect intention to prescribe Doxy PEP, and to what patients, has important implications for successful implementation.
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Antibacterianos , Doxiciclina , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde , Profilaxia Pós-Exposição , Pesquisa Qualitativa , Humanos , Doxiciclina/administração & dosagem , Cidade de Nova Iorque , Feminino , Masculino , Antibacterianos/administração & dosagem , Adulto , Atitude do Pessoal de Saúde , Infecções Sexualmente Transmissíveis/prevenção & controle , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Women living with metastatic breast cancer can benefit from physical activity. Presently, there is an absence of research outside of quantitative investigations on the benefits of structured programs. To enable effective physical activity advice and services, it is important to understand factors that may facilitate or prevent engagement. We therefore explored with women with metastatic breast cancer: (i) personal and behavioural factors that influenced physical activity, and (ii) the role of healthcare services in influencing engagement in being physically active. METHODS: Recruitment took place at a metropolitan cancer centre from November 2019 to January 2020. Women living with metastatic breast cancer were asked to participate in semi-structured interviews about physical activity, covering health-specific factors, goals, barriers, enablers, and interests. Interviews were recorded, transcribed and thematically analysed. RESULTS: Twenty-three women completed the interview, with a median age of 60 years (IQR: 20) and median time since metastatic diagnosis of 3.3 years (IQR: 3.0). Physical activity ranged from regular participation in structured exercise to simple incidental activity. Seven themes organised into three categories were identified. The category 'personal context' incorporated themes on: (1) both cancer and non-cancer related health factors; (2) time, work and family factors; and (3) exercise history and preferences. The category 'strategies for physical activity' incorporated themes on: (4) self-efficacy, and (5) routine and incidental activity. The category 'role of health and physical activity services' incorporated themes on: (6) tailored education and services, and (7) specific metastatic cancer services and considerations. CONCLUSIONS: Participants expressed diverse experiences with physical activity, with common notions on how physical activity is beneficial but difficult in which to adhere. Whilst some barriers to engagement in physical activity were unique to having cancer, many were not specific to metastatic breast cancer. For example, some participants emphasised specific considerations resulting from their disease, while others primarily reported on general factors such as being time-poor or having conflicting priorities. A patient-centred approach tailored to this group's health and behavioural context may be effective for women who are currently inactive to engage in physical activity.
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Neoplasias da Mama , Exercício Físico , Pesquisa Qualitativa , Humanos , Feminino , Neoplasias da Mama/psicologia , Neoplasias da Mama/patologia , Exercício Físico/psicologia , Pessoa de Meia-Idade , Idoso , Adulto , Metástase Neoplásica , Comportamentos Relacionados com a Saúde , Entrevistas como AssuntoRESUMO
INTRODUCTION: Gastric cancer (GC) families as a whole face the stressful time of cancer together, and the quality of life (QoL) of both the patient and the caregiver can be affected. Most past researchers have focused on the QoL of GC patients, but have neglected the role that caregivers play in the treatment process. The purpose of this study was to examine the factors influencing QoL of GC patients and their family caregivers, to compare the interactions and similarities and differences between the two influences, and to construct a conceptual model of the influences on QoL of GC patients and their caregivers based on the results of the study. METHODS: This descriptive qualitative study was conducted in 2024 at two branches of a tertiary hospital in China, and participants were recruited by adopting a purposive sampling approach, where participants were patients with GC who met the criteria recommended by gastrointestinal surgeons and nurses, and caregivers were designated by patients. The sample was selected considering maximum differentiation, such as age, gender, cancer stage, and disease duration of the respondents. The sample size was based on data saturation with no new themes emerging. Based on the results of the pre-interviews, we made some adjustments to the interview format, i.e., interviewing some informants individually and others jointly. We used semi-structured interviews for data collection for the qualitative study, where participants were informed about the study, their roles, the risks and benefits of the study, and signed an informed consent form before the interviews began. In addition, the quality of field notes was assessed after each session. The process was the same for all interviews. To ensure the accuracy of the information, all information transmitted on paper was reviewed while listening to the recorded voice. We used directed content analysis to analyze the content of the interviews. RESULTS: A total of 30 patients and 26 caregivers were interviewed. Four themes emerged from the study, which were contextual factors (disease-specific factors, physical and social environments and individual and family characteristics), knowledge and belief factors (self symptom assessment and healthcare seeking behavior, health information delivery and accessibility, life priority adjustment), self-regulation factors (strategies for health behavior change, role adaptation and emotion regulation) and social facilitators (positive motivation and emotional support from family, friends, and society, missing companionship and challenges encountered by family and friends visiting the patient after surgery, caregiving burdens and challenges). In addition, the study confirmed a high correlation between the QoL of patients and caregivers. CONCLUSION: Our results address past gaps in the understanding of QoL for families with GC and update the concept of QoL by constructing a conceptual model of the factors that influence QoL for GC survivors and caregivers, as well as outlining the changes needed to improve health outcomes and QoL for survivors and their caregivers.
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Cuidadores , Pesquisa Qualitativa , Qualidade de Vida , Neoplasias Gástricas , Humanos , Neoplasias Gástricas/cirurgia , Neoplasias Gástricas/psicologia , Feminino , Masculino , Cuidadores/psicologia , Pessoa de Meia-Idade , Idoso , Adulto , China , Adaptação Psicológica , Gastrectomia/psicologia , Apoio SocialRESUMO
BACKGROUND: Patients with a rare cancer in rural, regional, and remote Australia experience heightened challenges in their illness journey, including significant psychosocial impacts. Although peer support has shown benefits for common cancer patients living in urban areas, these programs often do not reach underserved groups for instance those with a rare cancer, or those living in rural, regional or remote areas. This study aimed to explore the characteristics of peer support programs for patients with a rare cancer living in rural, regional or remote areas. METHODS: Focus groups and interviews were conducted with 39 people with a rare cancer and 10 healthcare providers to explore key points for inclusion in a peer support service for people diagnosed with a rare cancer living in rural, regional or remote areas. Data were transcribed verbatim and analysed thematically, using Nvivo. RESULTS: Participants described their peer support needs using the key terms who, what, how, where, and when. Participants advocated for a flexible, multicomponent intervention that could meet the varied and fluctuating needs of this group. Participants also noted challenges with the practical delivery of such a service, specifically, the risk of receiving misinformation, adverse emotional reactions, interpersonal challenges and implementation issues. CONCLUSIONS: This study highlights the role of peer support in addressing unmet needs of patients with a rare cancer, particularly in rural areas, emphasising the importance of tailored, flexible, and multimodal interventions for the delivery of peer support that addresses diverse needs.
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Grupos Focais , Neoplasias , Grupo Associado , Pesquisa Qualitativa , População Rural , Apoio Social , Humanos , Feminino , Masculino , Neoplasias/terapia , Neoplasias/psicologia , Pessoa de Meia-Idade , Adulto , Idoso , Austrália , Doenças Raras/terapia , Doenças Raras/psicologia , Adulto Jovem , Participação dos InteressadosRESUMO
BACKGROUND: The beneficial role of physical activity for people living with cancer is well established. However, the importance of physical activity to women living with metastatic breast cancer is not known. As motivations and perceptions around physical activity influence behavioural uptake, a qualitative study was undertaken to explore the motivations and perceptions towards physical activity of this group. METHODS: Women living with metastatic breast cancer were recruited through a metropolitan cancer centre in Australia to participate in semi-structured interviews about their physical activity. Open-ended questions explored health-specific factors, goals, barriers, enablers, and interests. Interviews were recorded, transcribed and thematically analysed. RESULTS: Twenty-three women participated; median age was 60 years (IQR: 20) and median time since metastatic diagnosis was 3.3 years (IQR: 3.0). Twelve women were engaged with physical activity, seven reported intentions to be active but found it challenging, and four reported nominal interest in physical activity. Four categories, covering nine themes, were identified: (i) predispositions towards physical activity, incorporating themes on enjoyment and energy, and positivity and mental resilience; (ii) health-related motivations behind physical activity, incorporating themes on physical and mental health benefits; (iii) social motivations behind physical activity, incorporating themes on enjoying exercise with others, role models and social support, and others' negative perceptions of metastatic breast cancer; and (iv) connections between physical activity and metastatic breast cancer, incorporating themes on prognosis uncertainty, and reframing limiting perceptions. CONCLUSIONS: Participants described a wide-ranging spectrum of experiences and perceptions toward physical activity. Whilst most women perceived improved physical and mental well-being from being physically active, some women were not engaged in being physically active. Behaviour change strategies that target both their attitudes and those around them may address this gap.
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Neoplasias da Mama , Exercício Físico , Motivação , Pesquisa Qualitativa , Humanos , Feminino , Neoplasias da Mama/psicologia , Neoplasias da Mama/patologia , Pessoa de Meia-Idade , Exercício Físico/psicologia , Idoso , Adulto , Metástase Neoplásica , Austrália , Apoio Social , Percepção , Entrevistas como AssuntoRESUMO
BACKGROUND: Despite approvals of new first-line immunotherapies for advanced/metastatic gastric cancer/gastroesophageal junction cancer (aGC/GEJC), patients' median survival is around 14 months and their health-related quality of life (HRQoL) is affected by disease-related symptoms and treatment-related side effects. Using a targeted literature review (TLR) and patient interviews, this study identified disease- and treatment-related concepts that are important to patients with aGC/GEJC and their HRQoL. METHODS: A TLR was conducted to identify primary qualitative studies from 2018 to 2021 on patients' experiences with aGC/GEJC. The results, supplemented with the results of two previously identified studies from 2017, were used to develop a preliminary conceptual disease model of aGC/GEJC and an interview guide. Next, one-to-one concept elicitation interviews were conducted where patients with aGC/GEJC were asked about symptoms, impacts on daily life, experience of care, treatment expectations, and clinical trials. The conceptual model was refined using these patient experience data. RESULTS: Four studies selected from the TLR and the two previously summarized studies identified 47 symptoms (15 disease-related, 20 treatment-related, 12 disease- and treatment-related) and 35 impacts. Interviews with 20 patients identified 36 symptoms. The 12 most important symptoms (mentioned by ≥ 50% of patients; average disturbance ratings: ≥5, scale: 0 'not disturbing' to 10 'extremely disturbing') were: nausea, fatigue, temperature sensitivity, indigestion, weakness, diarrhea, vomiting, early satiety, swallowing difficulties, taste alterations, abdominal pain, general pain. Symptoms were mostly attributed to systemic treatments (chemotherapy, immunotherapy and targeted therapy), followed by surgery. Thirty-one impacts emerged from the interviews, the most common being emotional disturbances, impacts on daily activities and families, and requiring assistance from caregivers. Patients were mostly positive about their experience of care, willing to enroll in clinical trials, and keen to receive innovative treatments with few side effects. The final conceptual disease model details the symptoms and impacts of aGC/GEJC. CONCLUSIONS: The conceptual model provides valuable data on signs/symptoms and impacts of aGC/GEJC affecting patients' lives. This can guide the clinical outcome assessment strategy for the development of innovative treatments more comprehensively than input from physicians alone, to ensure treatments improve both patients' survival and HRQoL. Interviews also help understand patients' perspectives on clinical trials.
Gastric cancer is a tumor that starts in the stomach. Gastroesophageal cancer is a type of gastric cancer that starts where the food pipe, or esophagus, connects with the stomach. Together, these two types of cancers are referred to as GC/GEJC. When these cancers spread to other parts of the body, they are said to be advanced or metastatic. This is known as advanced GC/GEJC. Patients with advanced GC/GEJC have many symptoms from the disease. The medicines that patients take to treat or manage their cancer also have side effects. Patients with GC/GEJC often have surgery to remove the tumor in their stomach. Sometimes part or all of the stomach is removed, which can have side effects. The symptoms and side effects from treatments and surgery can have a large impact on patients' lives. The goal of this study was to understand the experience of patients with advanced GC/GEJC. Researchers wanted to understand which symptoms affect patients the most and whether these symptoms are caused by the disease, the treatment or surgery. They also wanted to find out how advanced GC/GEJC changes patients' lives, what their family do to help them, and what patients think about the care they receive from physicians and nurses. They were also interested in whether patients are willing to join clinical trials to test new medicines. To answer all these questions, researchers first looked at studies done by other researchers about patients with advanced GC/GEJC. Then, the researchers interviewed patients with advanced GC/GEJC. The researchers interviewed 20 patients in the US who provided their own personal stories about their advanced GC/GEJC. In total, patients mentioned 36 symptoms. Of these, 12 symptoms happened in over half of the patients and were also described as being 'disturbing' by patients. These 12 symptoms were: nausea, feeling tired, sensitivity to temperature, indigestion, weakness, diarrhea, vomiting, feeling full early, problems swallowing, changes in taste, stomach pain and general pain. When asked whether symptoms are caused by the disease, the treatment or surgery, patients most often said that symptoms are caused by the treatment, followed by surgery and then the disease. Patients often said that advanced GC/GEJC affected them emotionally. For example, they often felt anxious. They worried about being unable to work and take care of their families and felt scared about their future. Patients also said that advanced GC/GEJC affected how they live their lives, and that they needed daily help. Most patients were happy with the medical care that they were given, were interested in new medicines and were willing to join clinical trials. This information collected directly from the patients will help researchers and physicians to understand better the difficulties of living with advanced GC/GEJC so that these can be considered in future research studies. This information can also be used to identify which symptoms should be targeted by new treatments. It is hoped that these treatments will help increase the length and the quality of life of patients.
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Junção Esofagogástrica , Pesquisa Qualitativa , Qualidade de Vida , Neoplasias Gástricas , Humanos , Neoplasias Gástricas/psicologia , Neoplasias Gástricas/terapia , Neoplasias Gástricas/patologia , Neoplasias Gástricas/tratamento farmacológico , Junção Esofagogástrica/patologia , Neoplasias Esofágicas/terapia , Neoplasias Esofágicas/psicologia , Neoplasias Esofágicas/patologia , Feminino , Masculino , Pessoa de Meia-Idade , Idoso , Entrevistas como AssuntoRESUMO
BACKGROUND: The aim of this study was to identify the women's experiences of intimate partner violence (IPV) after breast cancer. METHOD: This is a qualitative descriptive study. Semi-structured interviews were carried out with 11 women with breast cancer, all participants referred to the outpatient Oncology Clinic in IRAN. Data were analyzed using conventional content analysis approach. RESULTS: The results revealed the essential category of "pervasive violence" which was manifested through six subcategories: 1) psychological violence, 2) physical violence, 3) sexual violence, 4) economic violence, 5) controlling behaviors, and 6) neglect. CONCLUSION: Women with breast cancer are more vulnerable to IPV and experience a wide range of IPV forms. Healthcare providers should monitor women with breast cancer in terms of IPV to prevent the consequences of IPV on the cancer treatment process.
Assuntos
Neoplasias da Mama , Violência por Parceiro Íntimo , Pesquisa Qualitativa , Humanos , Feminino , Neoplasias da Mama/psicologia , Neoplasias da Mama/epidemiologia , Irã (Geográfico)/epidemiologia , Violência por Parceiro Íntimo/psicologia , Violência por Parceiro Íntimo/estatística & dados numéricos , Pessoa de Meia-Idade , Adulto , IdosoRESUMO
BACKGROUND: Pharmacogenomics (PGx) constitutes an important part of personalized medicine and has several clinical applications. PGx role in clinical practice is known, however, it has not been widely adopted yet. In this study, we aim to investigate the perspectives of Greek physicians regarding the implementation of PGx testing in clinical practice and the key issues associated with it. METHODS: Fourteen interviews were conducted with physicians of various specialties for which PGx applications are available. A semi-structured interview guide was utilized based on the Consolidated Framework for Implementation Research (CFIR) context and the Diffusion of Innovation model. Transcripts were coded independently and compared by two members of the research team. Descriptive statistics were generated using Microsoft Excel. RESULTS: Six main themes emerged: awareness and use of PGx testing; source of information; key stakeholders of the PGx supply chain, their interactions and change agents; clinical benefit and significance of PGx testing; barriers and lack of reimbursement; and recommendations to boost the PGx adoption rate. Most respondents were aware of PGx applications, but only three had already recommended PGx testing. Peer-reviewed journals along with clinical guidelines were regarded as the most used source of information while stakeholders of the PGx supply chain were discussed. PGx was considered that promote patient-centered care, enhance medication clinical effectiveness, decrease the risk of side effects, and reduce healthcare costs. Lack of reimbursement, scarcity of resources, and high PGx cost were the foremost barriers affecting PGx adoption. CONCLUSIONS: It was concluded that if case PGx testing is reimbursed and physicians' training is reinforced, PGx implementation will be boosted and improved shortly.
Assuntos
Farmacogenética , Testes Farmacogenômicos , Médicos , Humanos , Grécia , Testes Farmacogenômicos/métodos , Testes Farmacogenômicos/estatística & dados numéricos , Farmacogenética/métodos , Medicina de Precisão/métodos , Feminino , Masculino , Atitude do Pessoal de Saúde , Pesquisa Qualitativa , Adulto , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Patients often mention distress, anxiety, or claustrophobia related to MRI, resulting in no-shows, disturbances of the workflow, and lasting psychological effects. Patients' experience varies and is moderated by socio-demographic aspects alongside the clinical condition. While qualitative studies help understand individuals' experiences, to date a systematic review and aggregation of MRI individuals' experience is lacking. PURPOSE: To investigate how adult patients experience MRI, and the characterizing factors. STUDY TYPE: Systematic review with meta-aggregation and meta-synthesis. POPULATION: 220 patients' reported experience of adults undergoing clinical MRI and 144 quotes from eight qualitative studies. ASSESSMENT: Systematic search in PubMed, Scopus, Web of Science, and PsycInfo databases according to the PRISMA guidelines. For quality appraisal, the Joanna Briggs Institute (JBI) tools were used. Convergent segregated approach was undertaken. DATA ANALYSIS: Participant recruitment, setting of exploration, type of interview, and analysis extracted through Joana Briggs Qualitative Assessment and Review Instrument (JBI QARI) tool. Meta-synthesis was supported by a concept map. For meta-aggregation, direct patient quotes were extracted, findings grouped, themes and characterizing factors at each stage abstracted, and categories coded in two cycles. Frequency of statements was quantified. Interviews' raw data unavailability impeded computer-aided analysis. RESULTS: Eight articles out of 12,755 initial studies, 220 patients, were included. Meta-aggregation of 144 patient quotes answered: (1) experiences before, at the scanning table, during, and after an MRI, (2) differences based on clinical condition, and (3) characterizing factors, including coping strategies, look-and-feel of medical technology, interaction with professionals, and information. Seven publications lack participants' health literacy level, occupation, and eight studies lack developmental conditions, ethnicity, or country of origin. Six studies were conducted in university hospitals. DATA CONCLUSION: Aggregation of patients' quotes provide a foundational description of adult patients' MRI experience across the stages of an MRI process. Insufficient raw data of individual quotes and limited socio-demographic diversity may constrain the understanding of individual experience and characterizing factors. LEVEL OF EVIDENCE: 1 TECHNICAL EFFICACY: Stage 5.
Assuntos
Imageamento por Ressonância Magnética , Humanos , Pesquisa Qualitativa , Ansiedade , AdultoRESUMO
OBJECTIVE: Chagas disease can cause several complications, such as Chagas cardiomyopathy, the most severe clinical form of the disease. Chagas cardiomyopathy is complex and involves biological and psychosocial factors that can compromise health-related quality of life. However, it is necessary to establish interactions that significantly impact the health-related quality of life of this population. Therefore, we aimed to develop and present a theoretical model on the impact of Chagas cardiomyopathy on the health-related quality of life of patients. METHODS: This is a cross-sectional study with a multi-methodology approach. The model's development process relied on the findings of a systematic review of qualitative studies, as well as a qualitative study involving participants from original communities, conventional rural areas and urban centres. Patients diagnosed with Chagas cardiomyopathy were interviewed using a semistructured research script, and the sample size was determined by theoretical saturation. Ultimately, the model underwent evaluation and received approval from three specialists in Chagas cardiomyopathy. RESULTS: Patients experience many emotional conflicts, manifested by feelings of sadness, existential emptiness and anxiety. They have fears related to the course of the disease, the inability to care for the people they love, their suffering and that of the family caregivers, as well as the fear of invasive treatments and death. The model based on social determinants of health was created and presented three different levels of factors that impact patients' health-related quality of life. At the first and most external level are social, cultural and environmental conditions: absence from work, difficulties in accessing healthcare services, limited resources for specialised care and geographical barriers to accessing healthcare services. At a more internally committed level, there are social factors and community networks encompassing social isolation, family conflicts, social stigma, emotional aspects, fears and disabilities. The innermost layer of factors represents personal and behavioural complaints, such as physical ailments and poor sleep quality. CONCLUSION: The factors that affect the health-related quality of life of patients with Chagas cardiomyopathy are diverse in their biopsychosocial nature.