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1.
Heliyon ; 10(6): e27539, 2024 Mar 30.
Artículo en Inglés | MEDLINE | ID: mdl-38524615

RESUMEN

Objectives: Type one diabetes (T1D) in children places substantial responsibility on parents as caregivers. This study investigated caregiver burden in parents of children with T1D by exploring the financial, physical, social, spiritual, and emotional or psychological problems they experienced. Methods: We conducted a qualitative scoping review of the databases PsycINFO, PROSPERO, OVID Medline, OVID EMBASE, Cochrane Library (CDSR and Central), EBSCO CINAHL, ProQuest Dissertations and Theses Global, and SCOPUS. Of 119 full text articles assessed for eligibility, 18 peer-reviewed qualitative studies were included. Studies were considered relevant if they focused on diabetes management and parental burden or the experience of caregiving for a child with T1D. Results: Using thematic analysis, six interrelated themes were identified: (a) experiencing chronic sorrow, (b) assuming responsibility for glucose highs and lows, (c) managing T1D and nighttime sleep disturbances, (d) making career sacrifices and choices to optimize T1D care, (e) navigating social experiences postdiagnosis, and (f) discovering new sources of support through online platforms. Conclusions: This synthesis highlights an all-encompassing experience involved in caretaking for a child with T1D. Caregiving duties lead to a constant sense of vigilance, especially due to fear of hypoglycemic incidents. Parents commonly experience challenges with balancing work demands with T1D management, which lead to career and financial sacrifices. Their burden of care is exacerbated by a lack of reliable respite care but helped somewhat by online peer support. Future research is needed on the care burden differences between mothers and fathers and how sociodemographic factors affect how caregiver burden is experienced.

2.
Front Public Health ; 9: 723613, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34957001

RESUMEN

Following the 2016 Horse River Wildfire in northern Alberta, the provincial health authority, the ministry of health, non-profit and charitable organizations, and regional community-based service agencies mobilized to address the growing health and mental health concerns among Indigenous residents and communities through the provision of services and supports. Among the communities and residents that experienced significant devastation and loss were First Nation and Métis residents in the region. Provincial and local funding was allocated to new recovery positions and to support pre-existing health and social programs. The objective of this research was to qualitatively describe the health systems response to the health impacts following the wildfire from the perspective of service providers who were directly responsible for delivering or organizing health and mental wellness services and supports to Indigenous residents. Semi-structured qualitative interviews were conducted with 15 Indigenous and 10 non-Indigenous service providers from the Regional Municipality of Wood Buffalo (RMWB). Interviews were transcribed verbatim and a constant comparative analysis method was used to identify themes. Following service provider interviews, a supplemental document review was completed to provide background and context for the qualitative findings from interviews. The document review allowed for a better understanding of the health systems response at a systems level following the wildfire. Triangulation of semi-structured interviews and organization report documents confirmed our findings. The conceptual framework by Mirzoev and Kane for understanding health systems responsiveness guided our data interpretation. Our findings were divided into three themes (1) service provision in response to Indigenous mental health concerns (2) gaps in Indigenous health-related services post-wildfire and (3) adopting a health equity lens in post-disaster recovery. The knowledge gained from this research can help inform future emergency management and assist policy and decision makers with culturally safe and responsive recovery planning. Future recovery and response efforts should consider identifying and addressing underlying health, mental health, and emotional concerns in order to be more effective in assisting with healing for Indigenous communities following a public health emergency such as a wildfire disaster.


Asunto(s)
COVID-19 , Incendios Forestales , Alberta , Animales , Caballos , Humanos , Salud Mental , Ríos
3.
Qual Health Res ; 31(8): 1472-1485, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33971774

RESUMEN

In May 2016, a wildfire devastated a northern region of Alberta, Canada, resulting in negative consequences on physical and mental stress, social relationships, and overall resilience among Indigenous residents. Research on coping and managing stress following a disaster has failed to incorporate unique characteristics from Indigenous perspectives. Sharing circles were held in urban and rural community settings to capture: (a) Indigenous perspectives of coping, (b) individual and collective strengths that helped Indigenous residents and communities to cope during and after the wildfire, and (c) intergenerational experiences of coping from stress among Indigenous residents. Indigenous residents' experience with coping from the wildfire was shaped by: (a) heightened physical and emotional stress, (b) existing structural inequities, and (c) strong community cohesion and connection to culture. An unexpected outcome of this research was the therapeutic value of the sharing circles for participants to share their experience.


Asunto(s)
Desastres , Incendios Forestales , Adaptación Psicológica , Alberta , Canadá , Humanos , Población Rural
4.
Asian Pac J Cancer Prev ; 20(2): 443-449, 2019 Feb 26.
Artículo en Inglés | MEDLINE | ID: mdl-30803206

RESUMEN

Background: Esophageal cancer (EC) and Gastric cancer (GC) have been identified as two of the most common cancers in the northeastern regions of Iran. The increasing rates of these types of cancers requires attention. This study aims to assess the potential risk factors for these two cancers and then determine shared risk factors between them in a population of Iranian patients using parametric survival models. Methods: This retrospective cohort study was conducted using 127 patients with EC and 184 patients with GC in East Azarbaijan, Iran who were diagnosed and registered during the years 2009-2010 in Iran's National Cancer Control Registration Program and were followed for five years. Parametric survival models were used to find the risk factors of the patients. Akaike Information Criteria was used to identify the best parametric model in this study. Interaction analysis was used to determine shared risk factors between EC and GC. Results: The mean (±standard deviation) age of diagnoses for EC and GC were 66.92(±11.95) and 66.5(±11.5) respectively. The survival time ranges of GC patients was (0.07-70.33) and the survival time ranges were from 0.10 to 69.03 months for EC patients. Multivariable Log- logistic model showed that being married (OR=2.25, 95% CI: 1.33 - 3.81) for EC patients and Esophagectomy surgery for EC (OR: 1.62, 95% CI: 1.04 ­ 2.55) and GC (OR: 1.60, 95% CI: 1.02 ­ 2.53) had significant effects on survival. Age at the time of diagnosis, job status, and Esophagectomy surgery were statistically comparable regarding their magnitude of effect on survival of two cancers (all Ps>0.05). Conclusion: Esophagectomy surgery and being married were important risk factors in EC and GC. The log-logistic model was the most appropriate statistical approach to identify significant risk factors on survival of both cancers.


Asunto(s)
Terapia Combinada/mortalidad , Neoplasias Esofágicas/mortalidad , Modelos Estadísticos , Neoplasias Gástricas/mortalidad , Neoplasias Esofágicas/terapia , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Pronóstico , Estudios Retrospectivos , Factores de Riesgo , Neoplasias Gástricas/terapia , Tasa de Supervivencia
5.
Asian Pac J Cancer Prev ; 19(11): 3081-3086, 2018 11 29.
Artículo en Inglés | MEDLINE | ID: mdl-30485945

RESUMEN

Background: Esophageal cancer is one of the leading causes of death worldwide. The global increasing rate of this type of cancer requires more attention. The purpose of this study was to determine the overall survival probability of esophageal cancer after diagnosis and to assess the potential risk factors in a population of Iranian patients. Materials and Methods: This retrospective cohort study was conducted on 127 cases with esophageal cancer in the Azarbaijan province, East of Iran. Participants in the study were diagnosed during 2009-2010 and were followed up for 5 years. The event was considered death due to esophageal cancer and those who survived until the end of the study were assumed as right censored. Censored quntile regression was fitted to find the overall survival of the patients using adjusted effects of variables and was compared with Cox regression model. Results: Patients' mean and median survival time were 16.99 and 10.06 months respectively and 89% off cases died by the end of the study. The 1, 3, 6, 12 and 36-month survival probabilities were 0.95, 0.76, 0.60, 0.43, and 0.18. The median survival time for females and males without surgery were 21.79 and 14.76 month respectively. The accuracy of predictions were 0.99 and 0.74 for the censored quantile regression and Cox, respectively. Conclusion: We concluded that being male, not having surgery, longer wait time between having symptoms and being diagnosed, low socioeconomic status and old age to be significant risk factors in reducing the probability of survival from esophageal cancer.


Asunto(s)
Neoplasias Esofágicas/mortalidad , Modelos Estadísticos , Anciano , Neoplasias Esofágicas/epidemiología , Femenino , Estudios de Seguimiento , Humanos , Irán/epidemiología , Masculino , Prevalencia , Pronóstico , Análisis de Regresión , Estudios Retrospectivos , Factores de Riesgo , Tasa de Supervivencia
6.
PLoS One ; 13(11): e0206588, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30383823

RESUMEN

OBJECTIVES: To develop and examine the content and face validity of the Patient Engagement In Research Scale (PEIRS) for assessing the quality of patient engagement in research projects from a patient partner perspective. METHODS: Our team of researchers and patient partners conducted a mixed qualitative and quantitative study in three phases. Participants were English-speaking adult patients (including informal caregivers, family members, and friends) with varying experiences as partners in research projects in Canada. 1) Questionnaire items were generated following thematic analysis of in-depth interviews and published literature. 2) A three-round e-Delphi survey process via email correspondence was undertaken to refine and select the items for a provisional PEIRS. 3) Two rounds of cognitive interviewing elicited participants' understanding and opinions of each item and the structure of the PEIRS. RESULTS: One hundred and twenty items were generated from 18 interviews and organized across eight themes of meaningful engagement of patients in health research to form an initial questionnaire. The e-Delphi survey and cognitive interviewing each included 12 participants with a range of self-reported diseases, health-related conditions, and use of healthcare services. The e-Delphi survey yielded a 43-item provisional PEIRS. The PEIRS was then reduced to 37 items organized across seven themes after 1) refinement of problems in its instructions and items, and 2) the combining of two themes into one. CONCLUSIONS: We developed a 37-item self-reported questionnaire that has demonstrated preliminary content and face validity for assessing the quality of patient engagement in research.


Asunto(s)
Investigación Biomédica , Participación del Paciente , Autoinforme , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Canadá , Técnica Delphi , Correo Electrónico , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Participación del Paciente/psicología , Investigación Cualitativa , Reproducibilidad de los Resultados , Adulto Joven
7.
Asian Pac J Cancer Prev ; 19(6): 1677-1683, 2018 Jun 25.
Artículo en Inglés | MEDLINE | ID: mdl-29938465

RESUMEN

Objective: Esophageal cancer (EC) is one of the gastrointestinal malignancies with a very high morbidity and mortality rate due to poor prognosis. This study aims to assess the effects of risk factors on survival and cure fraction of patients with EC in a population of Iranian patients using a non-mixture cure fraction model. Methods: This retrospective cohort study was conducted on 127 patients with EC who were diagnosed during 2009-2010 and were followed up for 5 years in East-Azarbaijan, Iran. Stepwise selection and non-mixture cure fraction model were used to find the risk factors of EC survival patients. Results: The mean (±standard deviation) diagnosis age of the EC was 66.92(±11.95). One, three and five-year survival probabilities were 0.44 (95% confidence interval (CI): 0.36-0.54), 0.2 (95% CI: 0.14-0.28) and 0.13 (95% CI: 0.08-0.2) respectively. Female sex (Estimate=-0.99; 95% confidence interval (CI): -1.41,-0.58; p-value<0.001), low level socioeconomic status (Estimate=0.39; 95%CI: 0.12,0.66; p-value=0.043), the group who did not do esophagectomy surgery (Estimate=0.58; 95%CI: 0.17,0.99; p-value=0.005) and unmarried group (Estimate=0.58; 95%CI: 0.11-1.05; p-value=0.015) were found as the significant predictor of survival and cure fraction of the EC patients. Population cure rate was 0.11 (95%CI: 0.07-0.19) and Cure fraction was estimated 5.11 percent. Conclusion: This study found gender, socioeconomic status, Esophagectomy surgery and marital status as the potential risk factors for survival and cure fraction of Iranian EC patients. Moreover, non- mixture cure fraction provides more accurate and more reliable insight into long-term advantages of EC therapy compared to standard classic survival analysis alternatives.


Asunto(s)
Neoplasias Esofágicas/mortalidad , Esofagectomía/mortalidad , Modelos Estadísticos , Adulto , Anciano , Anciano de 80 o más Años , Neoplasias Esofágicas/patología , Neoplasias Esofágicas/cirugía , Femenino , Estudios de Seguimiento , Humanos , Irán , Masculino , Persona de Mediana Edad , Pronóstico , Estudios Retrospectivos , Tasa de Supervivencia
8.
Vaccine ; 35(17): 2260-2264, 2017 04 19.
Artículo en Inglés | MEDLINE | ID: mdl-28364940

RESUMEN

Gavi, the Vaccine Alliance, supports immunisation programmes in eligible countries to reach children with lifesaving vaccines. Dramatic improvement in the scale and performance of current cold chain systems is required to extend the reach of immunisation services - especially for children living in remote locations - to advance progress towards full vaccine coverage. Achieving these improvements will require a healthier market for cold chain equipment where the products meet user needs, are sustainably priced, and are available in sufficient quantities to meet demand. Yet evidence suggests that the cold chain market has suffered from several failures including limited demand visibility, fragmented procurement, and insufficient information exchange between manufacturers and buyers on needs and equipment performance. One of Gavi's strategic goals is to shape markets for vaccines and other immunisation products, including cold chain equipment and in 2015, Gavi created a new mechanism - the Cold Chain Equipment (CCE) Optimisation Platform - to strengthen country cold chain systems by offering financial support and incentives for higher performing CCE. The main objective of the CCE Platform is to get more equipment that is efficient, sustainable, and better performing deployed to every health facility where it is required at an affordable price. To achieve these objectives, Gavi is putting in place tested market shaping approaches and tools adapted for the CCE market: the development of market strategies or 'roadmaps'; improvement of product performance through the development of target product profiles (TPPs); strategic engagement with CCE manufacturers and countries to enhance information sharing; and tailoring procurement tactics to the CCE market. These approaches and tools will allow for increased demand and supply of higher-performing, cost-effective and quality products. By strengthening immunisation systems with improved cold chain equipment, Gavi countries can begin to address the underlying problems limiting vaccine availability and improve the coverage and equity of vaccines.


Asunto(s)
Almacenaje de Medicamentos , Equipos y Suministros , Sector de Atención de Salud , Programas de Inmunización , Refrigeración/instrumentación , Vacunas/provisión & distribución , Humanos
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