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1.
J Transcult Nurs ; : 10436596241271248, 2024 Aug 16.
Artigo em Inglês | MEDLINE | ID: mdl-39148429

RESUMO

INTRODUCTION: Globalization has increased the importance of multicultural research to address health disparities and improve healthcare outcomes for underrepresented communities. The International Nursing Network for HIV Research (The Network) serves as a platform for researchers to collaborate on cross-cultural and cross-national HIV studies. This article discusses the Network's approach to overcoming barriers in multicultural and multinational research in a qualitative context. METHODS: The network created a protocol to guide decision-making throughout the translation process of qualitative data collected from participants in their native languages. The protocol includes aspects of why, when, what, who, how, where, and by what means the translation is completed. RESULTS: The protocol has allowed researchers to enhance the validity, reliability, and cultural sensitivity of translation process, ensuring the clarity and impact of their research findings. DISCUSSION: Rigorous translation practices promote cross-cultural understanding and respect for participants' perspectives, fostering global collaborations and knowledge exchange.

2.
Heliyon ; 10(15): e35120, 2024 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-39161834

RESUMO

Background: Digital inclusion of older people is an important agenda for the future and well-being of the older population, as it represents a form of social inclusion with significant gains for healthy aging. The present study aimed to understand the experiences of Brazilian older adults who use smartphones and the implications in their daily lives. Method: A qualitative study was developed using a constructivist grounded approach. Older people (≥60 years) with prior access to a smartphone were invited to participate in the study. Participation took place through semi-structured, audio-recorded interviews. Data collection and analysis occurred simultaneously using a constant comparative approach. Data management and analysis used the Atlas.ti® software. Results: Overall, 37 older people participated, with an average age of 70.60 ± 6.95 years, predominantly female (n = 33), white (n = 25), married (n = 26) and retired (n = 27). The first sample group included 27 older people with family support and the second group included 10 older people without family support (who lived alone in their homes). A core category emerged from the data analysis-"Expanding the personal and social development of older adults through smartphone communication"-around which three main categories emerged: 1) The smartphone as "a window to the world"; 2) The problem of misinformation and fake news on virtual networks; 3) Technological paradoxes in the use of smartphones. Conclusions: The digital transition associated with smartphone use brings unimaginable benefits to older adults who adopt positive habits to improve their well-being and expand their social connections, following efforts proposed by the Decade of Healthy Aging. However, older adults still face disparities and experience a significant digital divide, which represents a major challenge. Barriers to access are further aggravated in developing countries. We hope this study contributes to public health policies on digital inclusion and healthy aging.

3.
Palliat Care Soc Pract ; 18: 26323524241260425, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39099623

RESUMO

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

4.
Artigo em Inglês | MEDLINE | ID: mdl-39088152

RESUMO

Although women with schizophrenia face significant lifelong challenges due to their diagnosis and sex-related issues, those challenges are seldom taken into consideration in their medical treatment and general care. In order to report the needs and desires of a group of women with schizophrenia, we conducted a series of semistructured interviews with nine women diagnosed with schizophrenia and attending outpatient clinics at the Hospital Del Salvador in Valparaíso. Our qualitative study followed a phenomenological design. Using ATLAS.ti software, we performed a content analysis of the interview transcripts, developed a coding frame for each major topic addressed in the interviews, and triangulated the results. Despite presenting with psychotic symptoms, some women received different diagnoses. Although acknowledging the benefits of medication, women also reported concerns about weight gain and body image. All women reported experiences with stigma and self-stigma related to the diagnosis of schizophrenia, and most had experienced childhood trauma, including sexual abuse, parental violence, and/or bullying. Young women with schizophrenia also feared that if they become mothers, then their children might also have schizophrenia and/or that they would be unable to adequately care for them. Women with schizophrenia have different experiences and play different roles in society beyond their psychoses, an understanding that should integrated into more personalized treatments for schizophrenia that consider individual characteristics and needs.

5.
BMC Infect Dis ; 24(1): 798, 2024 Aug 08.
Artigo em Inglês | MEDLINE | ID: mdl-39118040

RESUMO

BACKGROUND: Tuberculosis (TB) infectiousness decreases significantly with only a few days of treatment, but delayed diagnosis often leads to late treatment initiation. We conducted a sequential explanatory mixed methods study to understand the barriers and facilitators to prompt diagnosis among people with TB. METHODS: We enrolled 100 adults who started TB treatment in the Carabayllo district of Lima, Peru, between November 2020 and February 2022 and administered a survey about their symptoms and healthcare encounters. We calculated total diagnostic delay as time from symptom onset to diagnosis. We conducted semi-structured interviews of 26 participants who had a range of delays investigating their experience navigating the health system. Interview transcripts were inductively coded for concepts related to diagnostic barriers and facilitators. RESULTS: Overall, 38% of participants sought care first from public facilities and 42% from the private sector. Only 14% reported being diagnosed with TB on their first visit, and participants visited a median of 3 (interquartile range [IQR] health facilities before diagnosis. The median total diagnostic delay was 9 weeks (interquartile range [IQR] 4-22), with a median of 4 weeks (IQR 0-9) before contact with the health system and of 3 weeks (IQR 0-9) after. Barriers to prompt diagnosis included participants attributing their symptoms to an alternative cause or having misconceptions about TB, and leading them to postpone seeking care. Once connected to care, variations in clinical management, health facility resource limitations, and lack of formal referral processes contributed to the need for multiple healthcare visits before obtaining a diagnosis. Facilitators to prompt diagnosis included knowing someone with TB, supportive friends and family, referral documents, and seeing a pulmonologist. CONCLUSIONS: Misinformation about TB among people with TB and providers, poor accessibility of health services, and the need for multiple encounters to obtain diagnostic tests were major factors leading to delays. Extending the hours of operation of public health facilities, improving community awareness and provider training, and creating a formal referral process between the public and private sectors should be priorities in the efforts to combat TB.


Assuntos
Diagnóstico Tardio , Tuberculose , Humanos , Peru , Adulto , Masculino , Feminino , Diagnóstico Tardio/estatística & dados numéricos , Tuberculose/diagnóstico , Pessoa de Meia-Idade , Acessibilidade aos Serviços de Saúde , Adulto Jovem , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Inquéritos e Questionários
6.
Sex Reprod Health Matters ; 32(1): 2374137, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-39105442

RESUMO

Costa Rica prohibits abortion except under narrow circumstances to save the pregnant person's life. The country boasts historically strong support for social policy and human rights, while also presenting a complex and restrictive abortion access landscape. From September 2021 to March 2022, we conducted 23 interviews with obstetrician-gynecologist (OB/GYN) physicians, OB/GYN medical residents, and policy stakeholders to explore the socio-ecological influences on abortion access in Costa Rica. We sampled clinicians and policy stakeholders from the Universidad de Ciencias Médicas listserv through snowball sampling and conducted semi-structured in-depth interviews in Spanish. We identified limited access to comprehensive sexual health education, lack of support from interpersonal networks, inadequate provider knowledge and training, financial and migratory status, and both provider and community stigma as substantial barriers to abortion access. This study addresses a gap in published research around the social determinants of abortion in Costa Rica and sheds light on the attitudes and opinions of the medical and policy stakeholder communities about abortion access. The results highlight the need for expanded access to comprehensive sexual health education, abortion-related training for healthcare providers, and increased programming efforts, such as funding, outreach, and implementation, to ensure comprehensive reproductive health services are available and accessible, especially for vulnerable populations in Costa Rica.


Assuntos
Aborto Induzido , Acessibilidade aos Serviços de Saúde , Pesquisa Qualitativa , Humanos , Costa Rica , Feminino , Aborto Induzido/psicologia , Gravidez , Política de Saúde , Masculino , Adulto , Entrevistas como Assunto , Atitude do Pessoal de Saúde , Estigma Social , Pessoal de Saúde/psicologia
7.
Nurs Inq ; : e12665, 2024 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-39138913

RESUMO

The purpose of this study is to understand institutional violence (IV) in the relationships between health professionals, hospitalized children, and family members. This is a qualitative study developed at the pediatric inpatient unit of a university hospital in the city of Salvador, Bahia, Brazil. The research participants consisted of 39 health professionals who specialized in pediatrics and 10 family members of hospitalized children. Semi-structured interviews were the method used for data collection. Using discourse analysis as a basis and taking a Foucauldian perspective, the researchers observed that the expressions of IV could be traced to abusive power relations within the system. We found four discursive forms within the data set: communication problems as IV, violence through inattention and neglect, violence as an action and consequent materialization on the body, and psychological violence as a submission mechanism. Based on these findings, we argue that professionals, managers, the scientific community, and users might be able to better guarantee the safety of children by recognizing IV and effectively intervening in it.

8.
Ciênc. Saúde Colet. (Impr.) ; Ciênc. Saúde Colet. (Impr.);29(8): e05602024, ago. 2024.
Artigo em Português | LILACS-Express | LILACS | ID: biblio-1569033

RESUMO

Resumo O cateter vesical de longa permanência pode ser indicado em situações clínicas, como nas doenças crônicas do sistema genitourinário ou neurológico. Além dos riscos de infecção, traumas e sangramentos, a permanência do cateter pode afetar dimensões psicoemocionais e socioeconômicas. Objetivamos compreender como a necessidade de uso do cateter urinário por um longo prazo afeta a autopercepção, as interrelações e o autocuidado deste paciente. Realizamos um estudo qualitativo, descritivo, a partir da entrevista de 17 pacientes, e aplicamos a análise temática e o pensamento complexo. Os diferentes prognósticos e as expectativas em relação ao cateter influenciaram a autopercepção, a adaptação, sua aceitação ou negação. A presença do cateter, seja como medida curativa ou para conforto, pode afetar a autoimagem e a sexualidade, gerar inseguranças e incertezas, que requerem compreensão da multidimensionalidade das situações, que sofrem interferências do meio pessoal, familiar e social, bem como da capacidade dos sistemas de saúde para o seu enfrentamento. Apesar dos desafios, a maioria dos participantes relatou disposição favorável para o autocuidado, seja para viabilizar retirada do cateter, ou para prevenir agravos em indicações vitalícias.


Abstract A long-term indwelling catheter may be indicated in clinical situations, such as chronic diseases of the genitourinary or neurological systems. In addition to the risks of infection, trauma, and bleeding, a catheter's permanence can affect psycho-emotional and socioeconomic dimensions. We aimed to understand how the need to use a long-term indwelling catheter affects this patient's self-perception, interrelationships, and self-care. We carried out a qualitative, descriptive study based on interviews with 17 patients, and applied thematic analysis and complex thinking. The different prognoses and expectations regarding the catheter influenced self-perception, adaptation, acceptance, or denial. The presence of a catheter, whether as a curative measure or for comfort, can affect self-image and sexuality, and generate insecurities and uncertainties, which require understanding the multidimensionality of situations that suffer interference from the personal, family, and social environment, as well as health systems' capacity to deal with it. Despite the challenges, the majority of participants reported a favorable disposition towards self-care, whether to enable catheter removal or to prevent injuries in lifelong indications.

9.
Podium (Pinar Río) ; 19(2)ago. 2024.
Artigo em Espanhol | LILACS-Express | LILACS | ID: biblio-1569411

RESUMO

En los últimos años, se utilizan cada vez con más profusión los estudios de caso como parte de la investigación del paradigma cualitativo. Se aplica como método y también como estrategia para dar respuesta a problemas clínicos, sociales y educativos que difícilmente se pueden abordar desde un modelo más centrado en la explicación de los fenómenos, y no en la comprensión de los mismos. Este artículo tiene como objetivo valorar la contribución de los estudios de caso en la investigación científica, y las potencialidades de su aplicación en el ámbito de la Cultura Física y el Deporte. Mediante el análisis bibliográfico, se valora el estudio de caso, insertado en la metodología de la investigación cualitativa educativa. El investigador lo utiliza según sus objetivos particulares, se exponen estudios de caso en diferentes esferas de actuación de la cultura física y el deporte, de manera que propicia un acercamiento preliminar, se utiliza como método y como técnica en el procesamiento de la información recopilada; también como estrategia investigativa que permite profundizar en casos particulares, en los cuales se analiza y obtiene información valiosa en dependencia del objetivo planificado en la investigación. Se concluye que en el ámbito de la Cultura Física y el Deporte este tipo de investigaciones permite sistematizar estudios particulares distintivos y ejemplarizantes que constituyen una fuente enriquecedora para la docencia, la investigación y las prácticas de entrenadores, psicólogos, deportistas y demás especialistas.


Nos últimos anos, os estudos de caso têm sido cada vez mais usados como parte da pesquisa do paradigma qualitativo. Ele é aplicado como um método e também como uma estratégia para responder a problemas clínicos, sociais e educacionais que dificilmente podem ser abordados a partir de um modelo mais focado na explicação dos fenômenos, em vez de sua compreensão. O objetivo deste artigo é avaliar a contribuição dos estudos de caso na pesquisa científica e o potencial de sua aplicação no campo da cultura física e do esporte. Por meio de uma análise bibliográfica, avalia-se o estudo de caso, inserido na metodologia da pesquisa educacional qualitativa. O pesquisador o utiliza de acordo com seus objetivos particulares, os estudos de caso são apresentados em diferentes âmbitos de atuação na cultura física e no esporte, de modo que favorece uma abordagem preliminar, é utilizado como método e como técnica no processamento das informações coletadas; também como estratégia de pesquisa que permite um estudo aprofundado de casos particulares, nos quais são analisadas e obtidas informações valiosas, dependendo do objetivo planejado na pesquisa. Conclui-se que, no campo da Cultura Física e do Esporte, esse tipo de pesquisa permite a sistematização de estudos particulares distintos e exemplares que constituem uma fonte enriquecedora para o ensino, a pesquisa e as práticas de treinadores, psicólogos, esportistas e outros especialistas.


In recent years, case studies have been increasingly used as part of qualitative paradigm research. It is applied as a method and also as a strategy to respond to clinical, social and educational problems that can hardly be approached from a model more focused on the explanation of the phenomena, and not on the understanding of them. The aim of this article is to evaluate the contribution of the case studies in scientific research, and the potential of their application in the field of Physical Culture and Sport. By means of the bibliographic analysis, the case study is evaluated, inserted in the methodology of educational qualitative research. The researcher uses it according to his particular objectives, case studies are presented in different spheres of action of physical culture and sport, so that it provides a preliminary approach, it is used as a method and as a technique in the processing of the information collected; also, as a research strategy that allows to deepen in particular cases, in which valuable information is analyzed and obtained depending on the objective planned in the research. It is concluded that in the field of Physical Culture and Sport, this type of research allows systematizing particular distinctive and exemplary studies that constitute an enriching source for teaching, research and practices of coaches, psychologists, athletes and other specialists.

10.
Int J Nurs Stud Adv ; 7: 100220, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-39050690

RESUMO

Background: Falls amongst the elderly represent a global public health challenge because of their potential to cause illness, death, and reduce the autonomy of this group. They also impact the emotional, family, social and economic well-being of those involved. Various strategies to prevent falls have been reported in the literature, focusing mainly on addressing individual risk factors, and on the continuous assessment of the risk of falls in older people. Objective: This study evaluated user satisfaction and acceptability of a comprehensive model, implemented in the community, to prevent falls amongst independent older adults aged 65 years and above. It sought to capture both the perceptions of the individuals who received the intervention and of the interventionists who implemented it. The study protocol was registered at ClinicalTrials.gov in November 2020 (ID: NCT04313062). Design: Qualitative, exploratory study using a case study design. The evaluation of the intervention followed the recommendations proposed by the Medical Research Council for complex interventions. Methods and participants: In the period between April 2021 to April 2022, 11 semi-structured interviews were conducted with independent older adults between 65 and 80 years of age who participated in the implementation of the comprehensive model in Santiago, Chile. Data were also collected with eight interventionists through: three semi-structured interviews at the beginning of the intervention; and two focus groups with seven interventionists at the end of the implementation of the model. The team members undertook a content analysis of the data collected. Results: Three themes emerged to account for the satisfaction and acceptability of the intervention with the model on the part of the participants and interventionists: (1) Previous experience of older persons and interventionists; (2) The older person-interventionist encounter and its context; and (3) Identification of facilitators, strengths and challenges for the implementation of the model. The results show a positive assessment of the model, highlighting the value of the social contact derived from the intervention by both participants and interventionists. Although the model involved an individual intervention, the participants' accounts indicate that it reached out to others, including family members and other elderly acquaintances. Moreover, the interventionists helped identify challenges in implementation and made recommendations to strengthen the model. Conclusion: The evaluation of satisfaction and feasibility of implementing the model showed positive results that will nurture the next phase of development of this model, which involves scaling up the intervention.

11.
Invest Educ Enferm ; 42(1)2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-39083814

RESUMO

Abstract: This article deals with the particularities of the quality of qualitative research, under the double lens of valuing it and ensuring it. While achieving the quality of qualitative research concerns only those who have opted for this methodology, assessing it is everyone's business because researchers in training will encounter, in the literature reviews, qualitative studies on which they must reflect and estimate their quality. Appreciating the quality of a research work is a complex activity as it is situated within a context and conducted by individuals who use any of the means available to do so. The means they use are criteria as evaluation guides and criteria checklists. For researchers in training, I suggest some guiding criteria to evaluate qualitative publications and ensure quality during the research process, key issues that they must address.


Assuntos
Pesquisa Qualitativa , Projetos de Pesquisa , Pesquisadores , Humanos , Pesquisadores/educação , Lista de Checagem
12.
Invest Educ Enferm ; 42(1)2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-39083823

RESUMO

Abstract: This article aims to reflect on scientific validation strategies in qualitative research in the light of translational theory in nursing. It is a reflection based on translational theory applied to nursing in strategies for validating qualitative studies. From this angle, validation is recognized as an adaptable construct, capable of eliciting/favoring an understanding of the subjectivity of the target audience in its relationship with the object of interest/study/research. The potential for advancing the science-profession lies in the interdisciplinary confluence of validation mechanisms, qualitative studies, the translational perspective, and nursing research. This confluence has the capacity to extend beyond theoretical and epistemological aspects. However, it is crucial to emphasize its profound, expressive, and relevant impact on the construction of scientific evidence. This impact aims to enhance the rigor and reliability of qualitative research, thereby bolstering its credibility and applicability in clinical practice.


Assuntos
Pesquisa em Enfermagem , Pesquisa Qualitativa , Humanos , Pesquisa em Enfermagem/métodos , Pesquisa em Enfermagem/normas , Reprodutibilidade dos Testes , Pesquisa Translacional Biomédica/métodos , Pesquisa Translacional Biomédica/organização & administração , Projetos de Pesquisa
13.
J Pediatr ; 274: 114193, 2024 Jul 14.
Artigo em Inglês | MEDLINE | ID: mdl-39004172

RESUMO

OBJECTIVE: To explore racially minoritized families' perceptions on how, and if, physicians should address children's racial identity and concepts of racism within clinical settings. STUDY DESIGN: Parents of racially minoritized children, ages 5 through 18, were interviewed to explore experiences with racial identity formation, discrimination, and the extent to which they wanted pediatricians to address these topics. Children were included at the discretion of their parents. Interviews were transcribed, coded, and analyzed through a critical race theory lens based in constructivist grounded theory. RESULTS: Parents encouraged their children to embrace their racial identities but also wanted to shield them from negative experiences of racism to preserve identity safety. Parents felt pediatricians should address racial issues in a manner specific to their child's situation. Thoughtful inclusion of race-related questions, whether in discussion or on questionnaires, is essential to prevent tension in a therapeutic relationship. There was no consensus on the use of preclinical screening. Instead, families highlighted the importance of embracing humility, trust, and respect. CONCLUSIONS: Participant families have preferences for approaches to address the effects of racism on their children's health. Pediatricians should understand the importance of identity safety and approach their discussions with cultural humility, which includes self-reflection, empathy, active listening, and flexible negotiation. Above all, pediatricians need to create a safe environment for appropriate discussion of these issues.

14.
PeerJ ; 12: e17743, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39076780

RESUMO

It has been indicated that extreme sport activities result in a highly rewarding experience, despite also providing fear, stress and anxiety. Studies have related this experience to the concept of flow, a positive feeling that individuals undergo when they are completely immersed in an activity. However, little is known about the exact nature of these experiences, and, there are still no empirical results to characterize the brain dynamics during extreme sport practice. This work aimed at investigating changes in psychological responses while recording physiological (heart rate-HR, and breathing rate-BR) and neural (electroencephalographic-EEG) data of eight volunteers, during outdoors slackline walking in a mountainous environment at two different altitude conditions (1 m-low-walk- and 45 m-high-walk-from the ground). Low-walk showed a higher score on flow scale, while high-walk displayed a higher score in the negative affect aspects, which together point to some level of flow restriction during high-walk. The order of task performance was shown to be relevant for the physiological and neural variables. The brain behavior during flow, mainly considering attention networks, displayed the stimulus-driven ventral attention network-VAN, regionally prevailing (mainly at the frontal lobe), over the goal-directed dorsal attention network-DAN. Therefore, we suggest an interpretation of flow experiences as an opened attention to more changing details in the surroundings, i.e., configured as a 'task-constantly-opened-to-subtle-information experience', rather than a 'task-focused experience'.


Assuntos
Altitude , Atenção , Eletroencefalografia , Emoções , Frequência Cardíaca , Caminhada , Humanos , Masculino , Caminhada/fisiologia , Caminhada/psicologia , Adulto , Atenção/fisiologia , Frequência Cardíaca/fisiologia , Emoções/fisiologia , Feminino , Adulto Jovem , Taxa Respiratória/fisiologia , Encéfalo/fisiologia , Esportes/psicologia , Esportes/fisiologia
15.
Disabil Rehabil ; : 1-8, 2024 Jul 29.
Artigo em Inglês | MEDLINE | ID: mdl-39072497

RESUMO

PURPOSE: To examine the burden of treatment (BoT) experienced by people with Amyotrophic Lateral Sclerosis (ALS) in Argentina. METHODS: Qualitative methodological design based on semi-structured interviews. Nineteen semi-structured interviews were conducted (PwALS = 7, informal caregivers= 12). The interview guides were designed based on the literature and BoT theory. Data were analysed following a framework analysis approach. RESULTS: The research highlighted the arduous journey toward obtaining a diagnosis, marked by delays influenced by healthcare system inefficiencies, lack of disease awareness and pandemic-related anxiety. Receiving the diagnosis was a destabilising experience, triggering the need to reframe self-identity, a new reality. As the disease progressed, patients encountered significant challenges in their daily activities and basic tasks, affecting their ability to work, communicate, and manage personal care. The burden extended beyond the patients to their primary caregivers. Access to specialised care, bureaucratic complexities in securing treatment, and the financial impact of managing the disease posed substantial challenges. CONCLUSION: The findings offer valuable insights into the experiences of PwALS and their caregivers in Argentina. They underscore the need for increased disease awareness, improved access to specialised care, and enhanced support networks to alleviate the burdens PwALS and their families face.


Streamlined pathways for patients with amyotrophic lateral sclerosis in Argentina are necessary to ensure timely access to comprehensive support and interventions, laying the foundation for holistic rehabilitation.There is a need to encourage clear communication between healthcare providers and patients to establish ongoing dialogue incorporating emotional, social, and psychological aspects into rehabilitation, aligning with patient-centric approaches.There is a need to develop and implement adaptive rehabilitation strategies to sustain independence and enhance quality of life for amyotrophic lateral sclerosis patients, addressing the physical, emotional, and social implications of the disease's progression.Rehabilitation professionals should advocate for systemic improvements to ensure equitable access to therapies and support alleviate financial burdens, enabling a comprehensive, patient-focused approach to rehabilitation.

16.
Longit Life Course Stud ; 15(3): 407-430, 2024 May 13.
Artigo em Inglês | MEDLINE | ID: mdl-38954408

RESUMO

This paper undertakes an analysis and discussion of the methodological challenges and insights derived from three longitudinal qualitative studies, all conducted in Chile during the COVID-19 pandemic and subject to comprehensive theoretical-methodological reflection processes centred on their respective designs. This analysis makes a significant contribution to interdisciplinary discussions within social research, with a particular emphasis on longitudinal trajectories. First, we present a comparative analysis of three studies in social work, utilising Saldaña's questions addressing changes and learning in longitudinal studies. The first study explores the labour trajectories of researchers, the second focuses on the educational trajectories of students, and the last examines therapeutic alliance trajectories between social workers and families within the child protection system. Following this, we delve into the methodological decisions made by the research group during the execution of these longitudinal studies. This encompasses an examination of participant involvement, temporal definitions of the adopted designs, and the most suitable methodological tools for analysing change processes over time. The outcomes of this comparative analysis reveal the distinctive characteristics of the three longitudinal studies, providing insights into how the time dimension is explored within them. We highlight key criteria essential for consideration in longitudinal qualitative research, particularly regarding participants and methodology. In conclusion, we advocate for an expanded reflection within the realm of longitudinal qualitative methodology, encompassing aspects such as design choices, approaches to data analysis, integration of technology in information processing, and strategies for maintaining participant engagement.


Assuntos
COVID-19 , Pesquisa Qualitativa , Projetos de Pesquisa , Serviço Social , Humanos , Estudos Longitudinais , COVID-19/epidemiologia , Chile , SARS-CoV-2
17.
Health Justice ; 12(1): 29, 2024 Jul 11.
Artigo em Inglês | MEDLINE | ID: mdl-38987420

RESUMO

BACKGROUND: Social reintegration relies on the support given to prisoners not only during their reentry into society but also throughout their imprisonment. Our goal was to analyze the expectations reported by cisgender and transgender women returning to society and of the justice and social welfare professionals from the Brazilian prison system. METHODS: A qualitative analysis using saturation sampling was conducted. The participants were selected through a non-probabilistic sampling technique. Data was collected through semi-structured interviews with professionals involved in the management of the prison system and female former inmates. Interviews were transcribed and analyzed using an open and focused coding process. Textual data was stored, organized, and coded using Atlas software according to emerging themes. RESULTS: The study involved 15 professionals and 13 female former inmates, five of them identified as transgender women. Among the professionals, the age range went from 38 to 65 years old; they reported a work history in their respective fields, from 10 to 35 years, with an equal distribution across genders. As for the female former inmates, their ages ranged from 24 to 42 years old, and the most reported crime was drug trafficking. Their incarceration time varied from 1 to 8 years. Female inmates were vulnerable to abuse and violence, including physical, sexual, and emotional violence. Women in situations of prior vulnerability faced additional challenges during their sentences. Transgender women were even more neglected and discriminated against by the system. Despite the professionals being aware and concerned about vulnerabilities and the need to improve the reintegration process, in general, they were not sensitive to the gender perspective. There were no specific policies able to support social integration for this public. CONCLUSIONS: Data showed multifaceted challenges faced by female former inmates within the Brazilian prison system, highlighting the insufficient policies for both cisgender and transgender women. Additionally, the results revealed a lack of sensitivity among professionals regarding gender issues and their particularities in the prison system and social reintegration. These findings emphasize the need for a more comprehensive and intersectional approach that addresses the diverse socio-economic backgrounds of these individuals.

18.
BMC Nurs ; 23(1): 455, 2024 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-38961487

RESUMO

BACKGROUND: The first waves of the COVID-19 pandemic had a negative impact on health systems and health professionals, due to the high number of cases and a lack of preparation. The aim of this study was to understand how nurses working in hospital units and in intensive care perceived the performance of nurse managers and senior hospital management during the first two waves of the pandemic. METHODS: The phenomenological approach proposed by Giorgi was used to investigate perceptions of the performance of nurse managers and senior hospital management during the first two waves of the COVID-19 pandemic in Spain. Fourteen clinical nurses who worked on the front line in inpatient units or intensive care units of the Health Services of Extremadura and Madrid in the first (March-April 2020) and second (October-November 2020) waves of the COVID-19 pandemic participated in this study. The data was collected through semi-structured interviews, following a script of themes, in a theoretical sample of nurses who were worked during the pandemic. RESULTS: Two main themes emerged from the analysis of the data: (1) perceptions about the performance of nurse managers and senior hospital managers during the first and second waves of the pandemic (health system failure; belief that senior hospital management professionals could have managed the pandemic better; recognizing the efforts of middle management (nursing supervisors); insufficient institutional support) and (2) strategies employed by nurses to compensate for the weaknesses in pandemic management. CONCLUSIONS: The clinical nurses perceived that the nurse managers demonstrated better management of the pandemic than the hospital's senior management, which they attribute to their proximity, empathy, accessibility, and ability to mediate between them and the senior management. The nurses also believe that the senior management of the hospitals was to blame for organisational failures and the poor management of the pandemic.

19.
Int J Telerehabil ; 16(1): e6605, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39022433

RESUMO

Given Colombia's status as a middle-income country with healthcare challenges, leveraging telemedicine could significantly benefit hard-to-reach regions, under-resourced and underserved communities. This study provides a comprehensive overview of the country's telerehabilitation landscape, exploring the clinicians' and patients' perspectives during the COVID-19 pandemic through systematic review and qualitative analysis. Sixteen therapists and three patients were identified via snowball sampling. The literature review was scarce and scattered across various topics in the country; some studies delved into specific aspects like legislative frameworks and patient outcomes from different medical specialties. The qualitative analysis demonstrates that despite the learning curve, telerehabilitation strengthens therapeutic support, enhances patient autonomy, fosters a positive patient-provider relationship, achieves treatment goals, promotes family involvement, reduces time and costs, and ensures continuity of therapy services. This study identified research gaps, challenges, and opportunities in telerehabilitation in a Latin American country. Adopting telemedicine technologies in low- and middle-income countries could significantly enhance their healthcare systems.

20.
Qual Health Res ; : 10497323241245340, 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39025673

RESUMO

During the COVID-19 pandemic, medical residents had the task of being the frontline of the response, being exposed to high risk of infection, increased clinical duty, and long and irregular working hours in highly restricted environments, increasing their levels of stress. We sought to expose the experiences of a group of geriatrics residents during this period of change in their professional and personal lives through the photovoice methodology. Thirteen participants were recruited and had 2 weeks to take photographs. The photographs were discussed in group meetings; the content of the conversations was transcribed and analyzed using interpretive description. Sixteen themes were identified. They were divided into personal life (11 themes) and life as a resident (5 themes). Adaptation was the main theme that came into discussion. The photographs and themes show how life changed for the participants, having a feeling of isolation, especially from their families, and highlighting their experiences as a team and community. While the pandemic, particularly at its beginning, was a period of uncertainty and a heavy load of work, it also provided learning and experience to this group of young physicians, which should not hide the fact that mental health concerns and burnout were a common situation. An online gallery was created which is publicly accessible.

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