Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 4.952
Filtrar
Más filtros

Intervalo de año de publicación
1.
Cancer ; 130 Suppl 20: 3590-3601, 2024 Oct 15.
Artículo en Inglés | MEDLINE | ID: mdl-38837334

RESUMEN

BACKGROUND: Despite mandated insurance coverage since 2006 and robust health infrastructure in urban settings with high concentrations of minority patients, race-based disparities in prostate cancer (PCa) treatment persist in Massachusetts. In this qualitative study, the authors sought to identify factors driving inequities in PCa treatment in Massachusetts. METHODS: Four hospitals offering PCa treatment in Massachusetts were selected using a case-mix approach. Purposive sampling was used to conduct semistructured interviews with hospital stakeholders. Additional interviews were conducted with representatives from grassroots organizations providing PCa education. Two study staff coded the interviews to identify major themes and recurrent patterns. RESULTS: Of the 35 informants invited, 25 participated in the study. Although national disparities in PCa outcomes were readily discussed, one half of the informants were unaware that PCa disparities existed in Massachusetts. Informants and grassroots organization representatives acknowledged that patients with PCa are willing to face transportation barriers to receive treatment from trusted and accommodating institutions. Except for chief equity officers, most health care providers lacked knowledge on accessing or using metrics regarding racial disparities in cancer outcomes. Although community outreach was recognized as a potential strategy to reduce treatment disparities and engender trust, informants were often unable to provide a clear implementation plan. CONCLUSIONS: This statewide qualitative study builds on existing quantitative data on the nature and extent of disparities. It highlights knowledge gaps in recognizing and addressing racial disparities in PCa treatment in Massachusetts. Improved provider awareness, the use of disparity metrics, and strategic community engagement may ensure equitable access to PCa treatment. PLAIN LANGUAGE SUMMARY: Despite mandated insurance and urban health care access, racial disparities in prostate cancer treatment persist in Massachusetts. This qualitative study revealed that, although national disparities were acknowledged, awareness about local disparities are lacking. Stakeholders highlighted the importance of ancillary services, including translators, rideshares, and navigators, in the delivery of care. In addition, whereas hospital stakeholders were aware of collected equity outcomes, they were unsure whether and who is monitoring equity metrics. Furthermore, stakeholders agreed that community outreach showed promise in ensuring equitable access to prostate cancer treatment. Nevertheless, most interviewed stakeholders lacked clear implementation plans.


Asunto(s)
Negro o Afroamericano , Accesibilidad a los Servicios de Salud , Disparidades en Atención de Salud , Neoplasias de la Próstata , Investigación Cualitativa , Humanos , Masculino , Neoplasias de la Próstata/terapia , Neoplasias de la Próstata/etnología , Massachusetts , Disparidades en Atención de Salud/etnología , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Negro o Afroamericano/estadística & datos numéricos
2.
BMC Med ; 22(1): 18, 2024 01 08.
Artículo en Inglés | MEDLINE | ID: mdl-38185665

RESUMEN

BACKGROUND: Methadone maintenance treatment (MMT) has been implemented in China for nearly two decades, with a significant decrease in the number of participants in recent years. However, there is a lack of comprehensive research focusing on the long-term effectiveness in the context of this decline, especially from the perspectives of MMT participants themselves. This study aims to address this gap by examining the benefits and challenges experienced by long-term MMT participants in China, to uncover potential causes of the decrease in participant numbers and to improve the effectiveness of the program. METHODS: We conducted semi-structured interviews with 21 long-term MMT participants (treatment duration ≥ 5 years) recruited through purposive sampling from 6 MMT clinics in the Guangdong Province, China, between December 2021 and August 2022. Thematic analysis was employed to analyze the transcribed interviews. Two analysts independently coded the data, and a third researcher double-coded 20% of transcripts to ensure intercoder reliability. RESULTS: Overall, participants corroborated the notable decline in MMT participants during their long-term MMT, citing death, arrest, and self-perceived abstinence from heroin, as their perceived driving factors. They reported positive changes in their health, family relationships, and social functioning. However, they identified economic hardship as their greatest challenge associated with MMT, further exacerbated by other barriers including the conflict of clinic opening hours and working schedules, discrimination from employers, and COVID-19-related restrictions. Additionally, participants identified issues with dose adjustment and emergency treatment continuation. CONCLUSIONS: This study outlines the overall improvement in the quality of life of long-term MMT participants. However, it highlights the need for official guidelines for dose adjustment and emergency treatment continuation as well as the provision of health education, job referrals, and flexibility of clinic opening times to facilitate the return to society receiving participants. Establishing a follow-up mechanism for those receiving MMT is also recommended to prevent relapses to heroin and other illicit substances.


Asunto(s)
Heroína , Calidad de Vida , Humanos , Reproducibilidad de los Resultados , China , Metadona/uso terapéutico
3.
J Med Virol ; 96(1): e29338, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-38163280

RESUMEN

Monkeypox (mpox), a viral zoonotic disease, is spreading worldwide. However, evidence that informs prevention and control strategies in the Asia Pacific Region is very limited. Our study aims to investigate the experiences of mpox patients from infection to treatment to provide scientific basis for the prevention and control. A multicenter qualitative design was used. A total of 15 mpox patients were recruited between July 6 and July 25, 2023, from six cities in China. Semistructured interviews were conducted by telephone and analyzed using the thematic analysis. The interview was divided into two sections: patients' experiences (prediagnosis experience, treatment-seeking experience, and quarantine experience) and advice. Prediagnosis experience was summarized into three themes: symptoms, possible routes of infection, and knowledge of mpox. Treatment-seeking experience was summarized into three themes: time of visit to hospital, diagnostic difficulties, and attitude toward diagnosis. Quarantine experience was summarized into three themes: body and mind reactions, reluctance to self-disclose infection status, and factors facilitating recovery. Themes identified from patients' advice were as follows: (1) Increase in testing channels and methods, (2) Development and introduction of vaccines, (3) Adjustment of quarantine program, (4) Improvement of treatment measures, and (5) Improvement of publicity and education. To effectively curb the mpox epidemic, structured measures are urgently needed to address the mpox-related stigma and discrimination. Targeted health education should be provided to MSM, focusing on the prevention, detection, and treatment services. Hospitals should enhance the training of clinicians in key departments including infectious disease and dermatology, to improve diagnostic capability and sensitivity. Furthermore, given the absence of specific antiviral medications, supervised home quarantine may be a good option.


Asunto(s)
Mpox , Humanos , China/epidemiología , Asia , Antivirales , Ciudades
4.
J Gen Intern Med ; 39(8): 1386-1392, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38277023

RESUMEN

BACKGROUND: Diagnostic errors cause significant patient harm. The clinician's ultimate goal is to achieve diagnostic excellence in order to serve patients safely. This can be accomplished by learning from both errors and successes in patient care. However, the extent to which clinicians grow and navigate diagnostic errors and successes in patient care is poorly understood. Clinically experienced hospitalists, who have cared for numerous acutely ill patients, should have great insights from their successes and mistakes to inform others striving for excellence in patient care. OBJECTIVE: To identify and characterize clinical lessons learned by experienced hospitalists from diagnostic errors and successes. DESIGN: A semi-structured interview guide was used to collect qualitative data from hospitalists at five independently administered hospitals in the Mid-Atlantic area from February to June 2022. PARTICIPANTS: 12 academic and 12 community-based hospitalists with ≥ 5 years of clinical experience. APPROACH: A constructivist qualitative approach was used and "reflexive thematic analysis" of interview transcripts was conducted to identify themes and patterns of meaning across the dataset. RESULTS: Five themes were generated from the data based on clinical lessons learned by hospitalists from diagnostic errors and successes. The ideas included appreciating excellence in clinical reasoning as a core skill, connecting with patients and other members of the health care team to be able to tap into their insights, reflecting on the diagnostic process, committing to growth, and prioritizing self-care. CONCLUSIONS: The study identifies key lessons learned from the errors and successes encountered in patient care by clinically experienced hospitalists. These findings may prove helpful for individuals and groups that are authentically committed to moving along the continuum from diagnostic competence towards excellence.


Asunto(s)
Errores Diagnósticos , Médicos Hospitalarios , Humanos , Médicos Hospitalarios/normas , Errores Diagnósticos/prevención & control , Masculino , Investigación Cualitativa , Femenino , Competencia Clínica/normas
5.
BMC Cancer ; 24(1): 1201, 2024 Sep 28.
Artículo en Inglés | MEDLINE | ID: mdl-39342175

RESUMEN

BACKGROUND: Breast cancer (BC) is the most common cancer in women worldwide. Early diagnosis of BC could considerably improve outcomes. Since health literacy could influence preventive behaviors and women's ability to make decisions about breast care, therefore, this study aimed to explore breast cancer literacy in women. METHODS: This qualitative study was conducted in Iran using the directed content analysis. Data were collected through face-to-face interviews with a purposeful sample of women from April 2021 to June 2022 and continued until saturation was reached. Interviews were analyzed using the initial matrix developed based on the European health literacy framework. RESULTS: In all twelve women were interviewed. During data analysis, 612 primary codes grouped into four dimension of health literacy (access, understanding, appraise, and apply) of three health domain (health care, disease prevention, and health promotion). Many believed that it was difficult to access accurate information about BC. They used various sources to obtain information. The participants addressed some facilitators and barriers in understanding the information and for information appraisal they mentioned seeking help from health professionals. Through the acquired cognitive skills, the participants took some steps to apply BC information. Also, having information about BC and the involvement of relatives with cancer were indicated as triggers for decision-making on breast care, while poor financial conditions, not having enough information, fear, shame, and embarrassment, were pointed out as inhibiting factors. CONCLUSIONS: The findings suggest that barriers in access, and understanding of information on breast cancer exist among women. The findings also suggest that women's decision-making and preventive behaviors on breast care are much dependent on social and cultural factors.


Asunto(s)
Neoplasias de la Mama , Alfabetización en Salud , Investigación Cualitativa , Humanos , Femenino , Neoplasias de la Mama/psicología , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/prevención & control , Irán/epidemiología , Adulto , Persona de Mediana Edad , Partería , Médicos/psicología , Confianza , Conocimientos, Actitudes y Práctica en Salud , Toma de Decisiones , Derivación y Consulta
6.
Diabet Med ; : e15439, 2024 Sep 20.
Artículo en Inglés | MEDLINE | ID: mdl-39302078

RESUMEN

AIMS: To explore the sexual experiences and interactions of women with type 1 diabetes to explicate an understanding of the impact of diabetes on women's sexual function. The study was conducted as part of a wider project to develop a patient-reported outcome measure to assess sexual dysfunction (SD) in premenopausal women with type 1 diabetes. METHODS: A qualitative study using face-to-face and virtual semi-structured interviews was conducted with premenopausal women with type 1 diabetes who have had some difficulties related to sexual functioning. Participants were recruited from two National Health Services (NHS) sites in the UK and from social media platforms. The data were analysed to generate themes using Framework Analysis approach. RESULTS: Eighteen women, aged 22-49, were interviewed (NHS sites n = 13; online n = 5). Five themes related to women experiences of SD were identified, these were; initiation of sexual activity, sexual confidence, sexual enjoyment, sexual engagement and sexual desire. CONCLUSIONS: SD in women with type 1 diabetes is a complex phenomenon impacting their experiences and quality of life. SD is related to multiple interacting biopsychosocial factors related to diabetes, including blood glucose levels, diabetes treatments, technologies and complications. A targeted measure of SD for women with type 1 diabetes specifically would allow for these factors to be assessed routinely in clinical care.

7.
J Rheumatol ; 51(8): 798-803, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-38749565

RESUMEN

OBJECTIVE: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with a wide spectrum of clinical manifestations. A decision aid (DA) for SLE was developed and implemented in 15 rheumatology clinics throughout the United States. This study explored the experiences of patients who viewed the DA to understand how patients engage with and respond to the SLE DA. METHODS: We conducted a qualitative descriptive study using semistructured interviews with a convenience sample of 24 patients during May to July 2022. RESULTS: Patients recognized the value of the SLE DA in providing general knowledge about SLE and different treatment options. However, patients expressed a desire for more comprehensive lifestyle information to better manage their condition. Another theme was the importance of having multiple formats available to cater to their different needs, as well as tailoring the DA to different stages of SLE. CONCLUSION: This study contributes to a broader understanding of how to provide patient-centered care for patients with SLE by offering practical insights that can inform the development of more effective, patient-centric health information technologies for managing chronic diseases, ultimately improving patient outcomes. Overall, this study underscores the significance of optimizing both the information content and determining the appropriate delivery of the tool for its future sustainability.


Asunto(s)
Técnicas de Apoyo para la Decisión , Lupus Eritematoso Sistémico , Participación del Paciente , Investigación Cualitativa , Humanos , Lupus Eritematoso Sistémico/terapia , Lupus Eritematoso Sistémico/psicología , Femenino , Adulto , Masculino , Persona de Mediana Edad , Atención Dirigida al Paciente , Anciano , Estados Unidos , Conocimientos, Actitudes y Práctica en Salud
8.
Curr Diab Rep ; 24(2): 19-25, 2024 02.
Artículo en Inglés | MEDLINE | ID: mdl-38112977

RESUMEN

PURPOSE OF REVIEW: Medication adherence plays an important role in improving health outcomes related to diabetes and comorbidity. The potential factors influencing medication adherence and how they contribute to health behaviors have not been synthesized to date. This review synthesized qualitative studies that identified factors influencing medication adherence among adults living with diabetes and comorbidity. RECENT FINDINGS: Twenty-eight findings were extracted and synthesized into four themes: perceived support, lack of knowledge, medication issues, and the importance of routine. The findings highlight the factors that support medication adherence and areas that can be targeted to support and promote medication adherence. The findings also support the potential role of healthcare providers in supporting people living with diabetes and comorbidity to adhere to and maintain medication regimes. Several factors were identified that are amenable to intervention within the clinical practice setting and have the potential to enhance medication adherence and improve health outcomes for people living with diabetes and comorbidities. The development of acceptable and effective interventions could have a positive effect on medication adherence and health outcomes.


Asunto(s)
Diabetes Mellitus , Cumplimiento de la Medicación , Adulto , Humanos , Comorbilidad , Diabetes Mellitus/tratamiento farmacológico , Diabetes Mellitus/epidemiología , Personal de Salud
9.
Gynecol Oncol ; 186: 170-175, 2024 07.
Artículo en Inglés | MEDLINE | ID: mdl-38691987

RESUMEN

OBJECTIVE: To examine patient barriers and facilitators to PARP inhibitor (PARP-I) maintenance therapy in ovarian cancer. PARP-I improves survival in ovarian cancer, but these multi-year therapies cost around $100,000 annually and are under-prescribed. METHODS: We recruited patients with ovarian cancer treated with PARP-I maintenance therapy at an academic health system for a semi-structured interview. Patient demographics, including genetics and PARP-I cost, were self-reported. We assessed patient experiences with barriers and facilitators of PARP-I usage. Two team members used a thematic approach to analyze and identify key themes. RESULTS: In May 2022, we interviewed 10 patients (mean age = 65 years; 80% White; 60% with a germline genetic mutation). Patients paid on average $227.50 monthly for PARP-I, straining resources for some participants. While sampled patients were insured, all patients identified having no or inadequate insurance as a major barrier to PARP-I. At the same time, all participants prioritized clinical effectiveness over costs of care. Patients identified PARP-I delivery from specialty pharmacies, separate and different from other medications, as a potential barrier, but each had been able to navigate delivery. Patients expressed significant initial side effects of PARP-I as a potential barrier yet reported clinician communication and prompt dose reduction as facilitating continuation. CONCLUSIONS: Patients identified cost, restrictive pharmacy benefits, and initial side effects as barriers to PARP-I usage. Having insurance and a supportive care team were identified as facilitators. Enhancing communication about PARP-I cost and side effects could improve patient experience and receipt of evidence-based maintenance therapy in ovarian cancer.


Asunto(s)
Neoplasias Ováricas , Inhibidores de Poli(ADP-Ribosa) Polimerasas , Investigación Cualitativa , Humanos , Femenino , Inhibidores de Poli(ADP-Ribosa) Polimerasas/economía , Inhibidores de Poli(ADP-Ribosa) Polimerasas/uso terapéutico , Inhibidores de Poli(ADP-Ribosa) Polimerasas/administración & dosificación , Neoplasias Ováricas/tratamiento farmacológico , Neoplasias Ováricas/economía , Anciano , Persona de Mediana Edad , Quimioterapia de Mantención/economía , Quimioterapia de Mantención/métodos
10.
Reprod Biomed Online ; 48(1): 103623, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-38029492

RESUMEN

RESEARCH QUESTION: What level of awareness do young adults have regarding the potential impacts of gym lifestyle factors and supplementation on male infertility? DESIGN: Between February and March 2023 a questionnaire (n = 153) was employed to gauge attitudes to and awareness of the effects of male reproductive health and gym lifestyles on male fertility. Two semi-structured focus groups (n = 10 total), stratified by sex assigned at birth, were conducted using a set of discussion topics. RESULTS: The survey revealed a statistically significant difference between male and female awareness of the potential impacts of some forms of high-intensity exercise and protein supplementation on male reproductive health (P = 0.045). Many men do not think about fertility unprompted; the survey revealed that fewer men have thought about their fertility compared with those who are curious about their fertility (P = 4.7 â€¯×  10-5) and those who believe their personal fertility is important to them (P = 8.1 â€¯×  10-6). Men were more likely to make a change in their behaviour if it had a long-term compared with a short-term effect on their fertility (P < 10-5). Five focus group themes surrounding awareness of male reproductive health were extracted. CONCLUSIONS: This work has shown that there is a significant lack of awareness and information surrounding the effects of gym lifestyles on male infertility in a young adult UK population. Crucially, levels of awareness differ significantly between men and women. Men have a potentially alarming lack of concern over their own fertility and how factors such as gym supplements can have negative long-term impacts.


Asunto(s)
Infertilidad Masculina , Salud Reproductiva , Recién Nacido , Humanos , Masculino , Femenino , Adulto Joven , Fertilidad , Estilo de Vida , Ejercicio Físico , Conocimientos, Actitudes y Práctica en Salud
11.
Lupus ; : 9612033241286991, 2024 Sep 21.
Artículo en Inglés | MEDLINE | ID: mdl-39305474

RESUMEN

OBJECTIVE: To investigate the needs of patients with SLE in terms of discharge planning, to outline the practical perspectives of clinical healthcare professionals regarding the enablers and impediments to SLE patients' discharge planning, and to establish a basis for the creation of SLE discharge plans for subsequently diagnosed patients. METHODS: Descriptive qualitative research methodology was used in this study, with the researcher herself as the research instrument. Healthcare professionals formally employed in the rheumatology and immunology department, as well as SLE patients admitted to a tertiary-level hospital in Anhui Province between August and December 2023, were chosen for the study using a purposeful sample technique. In-person, semi-structured in-depth interviews were carried out, and used thematic analysis to analyze the interview data and distil themes. RESULT: A total of 17 patients and 13 healthcare professionals were interviewed. Five themes and sixteen sub-themes in all were extracted: ①the needs of SLE patients for discharge planning; ②the present state of discharge planning implementation; ③factors conducive to the implementation of discharge planning; ④factors hindering the implementation of discharge planning; ⑤recommendations for implementing of discharge planning. CONCLUSION: Planning for the discharge of SLE patients is essential, and in order to support patients' successful discharge, management should strengthen training, thoroughly evaluate the needs of SLE patients, and create customized discharge plans.

12.
Lupus ; 33(7): 663-674, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38577967

RESUMEN

BACKGROUND AND OBJECTIVES: Systemic lupus erythematosus (SLE) is an autoimmune condition that can highly impact patients' quality of life (QoL). However, there is a lack of knowledge about SLE, affecting the general population and health care professionals (HCPs) alike. This lack of knowledge has negative implications for patients and the healthcare system, worsening prognosis, negatively impacting QoL, and increasing healthcare utilization. The aim of this paper is to draw attention, according to the perspective of the participants of this study, to the lack of awareness of SLE and its consequences in Spain, and to suggest improvements. PATIENTS AND METHODS: This qualitative, descriptive, observational, multicenter, and cross-sectional study included 40 patients with moderate or severe SLE, recruited during their routine visits in six university hospitals in Spain. The study also included 11 caregivers and 9 HCPs. All participants were individually interviewed. Data from the interviews were coded and analyzed thematically by two anthropologists following a phenomenological perspective. RESULTS: Our study identified a lack of disease awareness among primary care physicians, emergency medicine doctors, and other specialists treating SLE symptomatology. This led to diagnostic delays, which had a clinical and emotional impact on patients. Furthermore, symptom awareness was found to be context dependent. Differences in symptom awareness between HCPs and patients led to a mismatch between the severity evaluation made by doctors and patients. Some HCPs did not consider the limitations of the current severity evaluation of SLE, and therefore attributed symptoms potentially caused by SLE to the unfavorable socioeconomic conditions patients lived in. Finally, a lack of social awareness among friends, family members, and romantic partners led to lower social support, increased isolation, and negative physical and emotional impact for patients. Gender differences in the provision of support were identified. CONCLUSION: This study highlights the need to increase SLE awareness among patients, HCPs, and the broader public in order to improve patient QoL. Being aware of the clinical and emotional impact of such lack of awareness, as well as the role played by context on the patient experience of SLE, is a crucial step towards achieving this goal.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Lupus Eritematoso Sistémico , Calidad de Vida , Índice de Severidad de la Enfermedad , Humanos , Lupus Eritematoso Sistémico/psicología , Lupus Eritematoso Sistémico/diagnóstico , España , Femenino , Estudios Transversales , Masculino , Adulto , Persona de Mediana Edad , Investigación Cualitativa , Personal de Salud/psicología , Anciano , Diagnóstico Tardío , Adulto Joven , Concienciación
13.
Psychooncology ; 33(9): e9306, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39191639

RESUMEN

OBJECTIVE: Although the relative survival rate of childhood cancer has increased substantially in recent years, the pursuit of successful outcomes is often accompanied by negative impacts on pediatric and adolescent cancer survivors and their parents' physical and psychological well-being. However, little is known about their experiences during the period of cancer survivorship. This study aimed to gain an understanding of the experience of cancer survivorship among pediatric and adolescent cancer survivors and their parents. METHODS: This study utilized a descriptive qualitative study employing the photovoice design. From September 2022 to March 2023, 17 pediatric and adolescent cancer survivors (9-18 years), who had completed active treatment at least 6 months before recruitment, participated in this study. A total of 217 photographs submitted by survivors and their parents and the interview data, were thematically analyzed to identify themes and subthemes. RESULTS: The analysis revealed five prominent themes: indelible marks, struggling with late effects, striving to return to normalcy, the strength of support, and living in the moment and hope for the future. CONCLUSION: The findings shed light on the experiences of pediatric and adolescent cancer survivors and their parents throughout the cancer journey, elucidating the influence on both negative and positive aspects. Additionally, the study highlighted that photovoice facilitated self-reflection, the discovery of values, and the recognition of strengths and can be a therapeutic strategy for pediatric and adolescent cancer survivors and their parents in further research.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Padres , Fotograbar , Investigación Cualitativa , Humanos , Adolescente , Supervivientes de Cáncer/psicología , Femenino , Niño , Masculino , Padres/psicología , Neoplasias/psicología , Neoplasias/terapia , Adaptación Psicológica
14.
Psychooncology ; 33(5): e6346, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38743345

RESUMEN

OBJECTIVE: Low and middle income countries of Africa account for a disproportionate amount of the global health burden of cancer. Providing patients access to psychosocial oncology and palliative care through policy structures such as the National Cancer Control Plans (NCCP) is essential to improving the care provided to patients and their families. The first phase of this study sought to determine the extent to which palliative care and psychosocial oncology were integrated in NCCPs in African countries. METHODS: A qualitative thematic analysis of the plans was used using Nvivo, with two-raters coding and continuous team discussions. Data were organized into an infographic map showing the coverage of themes across African countries. RESULTS: Fifty-eight NCCPs and NCD plans were analyzed in the 54 countries in Africa. The findings illustrate a lack of standardization across countries' NCCPs in addressing psychosocial oncology and palliative care themes. Certain areas presented good coverage across several plans, such as barriers to access, education, awareness, and health behaviors, coordination of care, families, caregivers and community involvement, and palliative care. Other themes presented low coverage, such as doctor-patient communication, mental health, bereavement, psychosocial care, survivorship care, and traditional medicine. CONCLUSIONS: One may consider further developing NCCP areas as they pertain to psychosocial oncology and palliative care to ensure their proper place on the policy agenda for a healthier Africa.


Asunto(s)
Neoplasias , Cuidados Paliativos , Investigación Cualitativa , Humanos , África , Cuidadores/psicología , Política de Salud , Accesibilidad a los Servicios de Salud , Neoplasias/terapia , Neoplasias/psicología , Cuidados Paliativos/psicología , Relaciones Médico-Paciente , Psicooncología
15.
Psychooncology ; 33(10): e9317, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-39349419

RESUMEN

BACKGROUND: Despite the increasing burden of breast cancer in the developing world, there is a misunderstanding of the complex and multifaceted relationship between culture and cancer, particularly breast cancer. Hence, a dichotomy of illness narratives exists due to differential meaning making concerning breast cancer. While clinicians always recommend biomedical treatment, women with breast cancer often seek alternative treatment pathways. AIMS: To explore the experiences of women with breast cancer and clinicians in Nigeria on the dichotomy in the illness narratives. METHODS: This qualitative study used in-depth interviews and focus group discussion to explore the experiences of 22 women with breast cancer and 7 clinicians in Nigeria on the dichotomy in the illness narratives using grounded theory method analysis. RESULTS: This study revealed that many women living with breast cancer (WLBC) hold health beliefs that are contradictory to the biomedical norm. They mostly sought treatment based on the perceived aetiology of breast cancer. The treatment pathway follows faith and traditional healing as alternatives or sometimes in combination with biomedicine. WLBC reported a constant fear of biomedical treatment, perceived to be harmful to women's sexuality, fertility and body image. Hence, after perceived treatment failure from alternative care, biomedical care becomes the last resort, usually at an advanced stage of breast cancer, often responsible for poor prognosis. CONCLUSION: There is a dichotomy of illness construction between sufferers and health practitioners. To guide women with breast cancer on the path of care, modern care practitioners should consider some cultural norms and practices without compromising professional ethos.


Asunto(s)
Neoplasias de la Mama , Grupos Focales , Investigación Cualitativa , Humanos , Femenino , Neoplasias de la Mama/psicología , Neoplasias de la Mama/terapia , Nigeria , Persona de Mediana Edad , Adulto , Narración , Teoría Fundamentada , Conocimientos, Actitudes y Práctica en Salud , Anciano , Entrevistas como Asunto , Aceptación de la Atención de Salud/psicología , Actitud del Personal de Salud , Imagen Corporal/psicología
16.
Malar J ; 23(1): 216, 2024 Jul 19.
Artículo en Inglés | MEDLINE | ID: mdl-39030554

RESUMEN

BACKGROUND: Recommended since 2012 by the World Health Organization (WHO), seasonal malaria chemoprevention (SMC) is a community-based intervention to prevent malaria in children in African regions where malaria transmission follows a seasonal pattern. Following the publication of consolidated WHO guidelines for malaria, SMC is expected to reach more children in new geographies in future years. Though SMC has been shown to reduce malaria-related morbidity and mortality, there is potential for quality improvement of the intervention implementation. Assisted by ten quality standards from a framework developed by Malaria Consortium, this paper aims to better understand the quality of SMC implementation and identify potential barriers to quality delivery of SMC. METHODS: A qualitative thematic analysis on data collected after the annual SMC rounds implemented in Burkina Faso and Chad in 2019 was conducted. Sixteen focus group discussions conducted with caregivers and community distributors were analysed. Three selected quality standards for SMC delivery; planning and enumeration; community engagement; and administration of SMC medicines provided overarching quality themes under which subthemes were identified. RESULTS: Eight subthemes relating to the three quality standards were identified. Although SMC was well accepted by communities in both settings, common barriers to the quality delivery of SMC were identified including difficulty ensuring adherence to the SMC administration protocol; difficulties reaching mobile populations; concerns around adverse drug reactions; rumours, and concerns about SMC safety; and community distributors' working conditions. Context-specific barriers included: the suboptimal timeliness of the SMC round in Burkina Faso, and the lack of involvement of female caregivers in mobilization activities in Chad. CONCLUSION: In the context of increased adoption of SMC, this paper provides relevant insights and recommendations for the improved implementation of SMC programmes. These include the integration of strategies addressing communities' concerns around adverse drug reactions, gender-specific mobilization strategies, and attention to community distributors' working conditions. It also highlights the importance and utility of further, robust research on the quality of SMC delivery.


RéSUMé EN FRANçAIS: BACKGROUND: Recommandée depuis 2012 par l'Organisation mondiale de la santé (OMS), la chimioprévention du paludisme saisonnier (CPS) est une intervention communautaire visant à prévenir le paludisme chez les enfants dans les régions d'Afrique où la transmission du paludisme suit un schéma saisonnier. Suite à la publication des lignes directrices consolidées de l'OMS sur le paludisme, la CPS devrait toucher davantage d'enfants dans de nouvelles zones géographiques dans les années à venir. Bien qu'il ait été démontré que la CPS réduisait la morbidité et la mortalité liées au paludisme, il y a du potentiel pour améliorer la qualité de l'implémentation l'intervention. En s'appuyant sur un cadre de normes de qualité de la CPS développé par le Malaria Consortium, cette publication vise à mieux comprendre la qualité de la mise en œuvre de la CPS et à identifier les obstacles potentiels à la qualité de la mise en œuvre de la CPS. METHODS: Une étude qualitative basée sur l'analyse secondaire des données collectées après les tournées annuelles du SMC mises en œuvre au Burkina Faso et au Tchad en 2019 a été menée. Une analyse thématique de 16 discussions de groupe menées avec des parents/tuteurs et des distributeurs communautaires a été faite. Trois des éléments clés du cadre des normes de qualité pour le déploiement de la CPS ont fourni les thèmes de qualité principaux sous lesquels les sous-thèmes identifiés ont été placés. RéSULTATS: Huit sous-thèmes relatifs aux normes de qualité ; la planification, la sensibilisation et l'engagement des communautés ainsi que l'administration des médicaments de la CPS ont été identifiés. Bien que la CPS ait été bien acceptée par les communautés dans les deux contextes, des obstacles communs à la qualité du déploiement de la CPS ont été identifiés, notamment : la difficulté d'assurer le respect du protocole d'administration de la CPS; atteindre les populations mobiles ; les préoccupations concernant les effets indésirables des médicaments ; les rumeurs et les préoccupations concernant le SMC; et les conditions de travail des distributeurs communautaires. D'autres barrières spécifiques au contexte de déploiement ont été identifiées, telles que le choix sous-optimal de la période de déploiement au Burkina Faso ou le manque d'implication des mères/tutrices dans les activités de mobilisation au Tchad. CONCLUSION: Dans le contexte de l'adoption croissante de la CPS, cette publication fournit des informations et des recommandations pertinentes pour l'amélioration de la mise en œuvre des programmes de CMS, telles que l'intégration de stratégies répondant aux préoccupations des communautés concernant les effets indésirables des médicaments, les stratégies de mobilisation spécifiques au genre, et/ou l'attention portée aux conditions de travail des distributeurs communautaires. Cette publication souligne également l'importance et l'utilité des recherches en cours sur la qualité du déploiement de la CPS.


RESUMO EM PORTUGUêS: INTRODUçãO: Recomendada desde 2012 pela Organização Mundial de Saúde (OMS), a quimioprevenção sazonal do paludismo (SMC) é uma intervenção de base comunitária para prevenir o paludismo em crianças em zonas da África onde a transmissão do paludismo segue um padrão sazonal. Após a publicação das diretrizes consolidadas da OMS sobre o paludismo, espera-se que a SMC chegue a mais crianças em novas zonas geográficas nos próximos anos. Embora se tenha demonstrado que a SMC reduz a morbilidade e a mortalidade causadas pelo paludismo, há potencial para melhorar a qualidade da implementação da intervenção. Com ajuda dum quadro de padrões de qualidade para a SMC desenvolvido pelo Malaria Consortium, a presente publicação visa compreender melhor a qualidade da implementação da SMC e identificar potenciais barreiras à qualidade da implementação da SMC. MéTODOS: Foi realizado um estudo qualitativo baseado na análise secundária dos dados recolhidos após as rondas anuais da SMC implementadas no Burkina Faso e no Chade em 2019. Foi efectuado uma análise temática de 16 discussões de grupos focais realizadas com cuidadores e distribuidores comunitários. Tres padrões do quadro de normas de qualidade para a implementação da SMC forneceu os principais temas de qualidade sob os quais os subtemas identificados foram colocados. RESULTADOS: Foram identificados oito sub-temas relacionados com padrões de qualidade; planeamento; sensibilização e envolvimento da comunidade; e administração de drogas da SMC. Embora a SMC tenha sido bem aceita pelas comunidades em ambos os contextos, foram identificadas barreiras comuns à implementação duma SMC de qualidade, incluindo: a dificuldade de assegurar o cumprimento do protocolo de administração da SMC; atingir populações móveis; preocupações com reacções adversas aos medicamentos; rumores e preocupações com a SMC; e as condições de trabalho dos distribuidores comunitários. Foram identificados outros obstáculos específicos ao contexto de implantação, tais como a escolha subaproveitada do período de implantação no Burkina Faso ou a falta de envolvimento das cuidadoras femininas nas actividades de mobilização no Chade. CONCLUSãO: No contexto do aumento da adopção da SMC, esta publicação fornece informações e recomendações relevantes para melhorar a implementação de programas de SMC, tais como estratégias integradoras que abordam as preocupações da comunidade sobre reacções adversas aos medicamentos, estratégias de mobilização específicas de género, e/ou atenção às condições de trabalho dos distribuidores comunitários. Salienta igualmente a importância e a utilidade das investigaçãos em curso sobre a qualidade da implementação da SMC.


Asunto(s)
Cuidadores , Quimioprevención , Malaria , Burkina Faso , Chad , Malaria/prevención & control , Quimioprevención/estadística & datos numéricos , Humanos , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Antimaláricos/administración & dosificación , Antimaláricos/uso terapéutico , Estaciones del Año , Agentes Comunitarios de Salud , Femenino , Masculino , Preescolar , Grupos Focales
17.
Malar J ; 23(1): 43, 2024 Feb 12.
Artículo en Inglés | MEDLINE | ID: mdl-38347633

RESUMEN

BACKGROUND: Malaria remains an enduring public health concern in Indonesia, exacerbated by its equatorial climate that fosters the proliferation of Anopheles mosquitoes. This study seeks to assess the performance of the malaria elimination programme comprehensively. METHODS: Between May and August 2022, a qualitative study was conducted in Muara Enim Regency, South Sumatra Province, involving 22 healthcare professionals from diverse backgrounds. These informants were strategically chosen for their pivotal roles in providing profound insights into various facets of the malaria elimination programme. This encompasses inputs such as human resources, budgetary allocation, and infrastructural support; processes like case identification and management, capacity enhancement, epidemiological surveillance, prevention measures, outbreak control, and enhanced communication and educational initiatives; and, notably, the programme's outcomes. Data were collected through 3-h Focus Group Discussions (FGDs) divided into two groups, each with 12 participants: healthcare professionals and programme managers. Additionally, in-depth interviews (IDIs) were conducted with ten informants. Employing the Input-Process-Output (IPO) model, this study meticulously analysed the healthcare system dynamics and the interventions' efficacy. RESULTS: The study unveiled many challenges during the input phase, including the absence of entomologists and a shortage of diagnostic tools. Despite these obstacles, it documented remarkable accomplishments in the output domain, marked by significant advancements in the distribution of mosquito nets and the successful implementation of the Early Warning System (EWS). Despite the adversities, the programme has made substantial strides towards malaria elimination. CONCLUSIONS: Urgent action is imperative to bolster the effectiveness of the malaria elimination programme. Key measures encompass augmenting the entomologist workforce, optimizing resource allocation, and ensuring stringent adherence to regional regulations. Addressing these concerns will enhance programme efficacy, yielding enduring public health benefits. This research substantially contributes to Indonesia's ongoing malaria elimination endeavours, furnishing actionable insights for programme enhancement. Consequently, this research holds significant importance for the malaria elimination drive.


Asunto(s)
Malaria , Animales , Humanos , Indonesia , Malaria/prevención & control , Malaria/epidemiología , Salud Pública , Brotes de Enfermedades , Investigación Cualitativa
18.
Clin Transplant ; 38(5): e15338, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38762787

RESUMEN

BACKGROUND: Kidney transplantation is the optimal treatment for end-stage renal disease. However, highly sensitized patients (HSPs) have reduced access to transplantation, leading to increased morbidity and mortality on the waiting list. The Canadian Willingness to Cross (WTC) program proposes allowing transplantation across preformed donor specific antibodies (DSA) determined to be at a low risk of rejection under the adaptive design framework. This study collected patients' perspectives on the development of this program. METHODS: Forty-one individual interviews were conducted with kidney transplant candidates from three Canadian transplant centers in 2022. The interviews were digitally recorded and transcribed for subsequent analyses. RESULTS: Despite limited familiarity with the adaptive design, participants demonstrated trust in the researchers. They perceived the WTC program as a pathway for HSPs to access transplantation while mitigating transplant-related risks. HSPs saw the WTC program as a source of hope and an opportunity to leave dialysis, despite acknowledging inherent uncertainties. Some non-HSPs expressed concerns about fairness, anticipating increased waiting times and potential compromise in kidney graft longevity due to higher rejection risks. Participants recommended essential strategies for implementing the WTC program, including organizing informational meetings and highlighting the necessity for psychosocial support. CONCLUSION: The WTC program emerges as a promising strategy to enhance HSPs' access to kidney transplantation. While HSPs perceived this program as a source of hope, non-HSPs voiced concerns about distributive justice issues. These results will help develop a WTC program that is ethically sound for transplant candidates.


Asunto(s)
Rechazo de Injerto , Accesibilidad a los Servicios de Salud , Fallo Renal Crónico , Trasplante de Riñón , Listas de Espera , Humanos , Femenino , Masculino , Persona de Mediana Edad , Canadá , Fallo Renal Crónico/cirugía , Fallo Renal Crónico/psicología , Adulto , Rechazo de Injerto/etiología , Pronóstico , Estudios de Seguimiento , Supervivencia de Injerto , Donantes de Tejidos/provisión & distribución , Donantes de Tejidos/psicología , Obtención de Tejidos y Órganos , Anciano , Isoanticuerpos/inmunología
19.
Dement Geriatr Cogn Disord ; 53(2): 83-90, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38422998

RESUMEN

INTRODUCTION: We elicited Vietnamese Americans' perspectives on culturally appropriate recruitment into a new research registry: Collaborative Approach for Asian Americans, Native Hawaiians, and Pacific Islanders (AANHPIs) Research and Education (CARE). METHODS: Three focus groups were conducted with 21 Vietnamese Americans. Topics included knowledge about and experiences with research, outreach and recruitment methods for research participation and registry enrollment, and views about research incentives. Focus group transcripts were analyzed thematically. RESULTS: Mean age of participants was 41 years (range 18-73), 57% were male, 86% were non-US born, and 81% had never participated in a research study. Themes that emerged included (1) motivations to participate in research to gain knowledge: for oneself, for family's benefit, and for the Vietnamese American community as a whole; (2) necessity of trustworthy and credible individuals/spokespersons to promote the research initiative; (3) recruitment strategies that are age-specific and culturally appropriate, and (4) importance of monetary incentives. CONCLUSION: Findings from this study will be used to guide recruitment into and engagement with CARE among Vietnamese Americans but are also relevant for other registries aiming to diversify their participants.


Asunto(s)
Envejecimiento , Asiático , Grupos Focales , Sistema de Registros , Adolescente , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven , Envejecimiento/psicología , Asiático/psicología , Motivación , Selección de Paciente , Vietnam/etnología , Estados Unidos
20.
AIDS Behav ; 28(5): 1581-1593, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38231362

RESUMEN

Successful aging (SA) is an important target for HIV care. However, we have insufficient understanding of how older women living with HIV (OWLH) in the US define SA. We explored conceptions of SA by OWLH and older women at risk of HIV and examined whether SA conceptions differed by (1) HIV serostatus, and (2) participation in the Women's Interagency HIV Study (WIHS). These analyses were part of a larger mixed-methods study with a sequential design. Participants were recruited at two clinical WIHS sites. We enrolled both WIHS participants and non-WIHS clinic patients. Our sample was 84% Black and included 29 OWLH and 15 older women at risk of HIV. We conducted 21 semi-structured interviews and four focus groups. The dataset was analyzed using descriptive, comparative, and relational analysis. We found four interlinked themes: life course perspective, accepting and celebrating aging, taking care of yourself, and looking good. The life course perspective was a core theme: participants assessed their aging in comparison to their earlier life hardships. These themes were similarly present among OWLH and older women at risk of HIV, although OWLH emphasized taking care of HIV. SA conceptualizations by OWLH did not differ whether or not they participated in the WIHS. Women living with or at risk of HIV may experience severe hardships throughout their lives. Overcoming these hardships may be linked to SA. Assessing the needs and connecting women to resources and programs are critical for SA promotion.


Asunto(s)
Envejecimiento , Grupos Focales , Infecciones por VIH , Entrevistas como Asunto , Investigación Cualitativa , Humanos , Femenino , Infecciones por VIH/psicología , Persona de Mediana Edad , Anciano , Envejecimiento/psicología , Adaptación Psicológica , Calidad de Vida , Estados Unidos/epidemiología
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA