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OBJECTIVES: To evaluate a co-designed intervention using digital resources "Vietnam Cancer Caring Coping" (V-CCC) on the health literacy, depression, and quality of life of caregivers supporting a cancer patient in oncology hospitals in Vietnam. METHODS: A pre-post quantitative evaluation with adult cancer caregivers across regional Oncology hospitals in Vietnam (Ho Chi Minh City, Da Nang, Can Tho, and Hue). Participants completed baseline and follow-up measures of health literacy (HLS-SF12) depression (PHQ-9) and Health-related Quality of Life (5Q-5D-5L). Participants accessed and reviewed V-CCC for a 2-week period. RESULTS: Two hundred and thirty-four caregivers completed pre and post-tests. Most participants were female (n = 143, 61%), married (n = 165, 70%), aged 18-44 (n = 155, 66%), lived rurally (n = 157, 67%). All health literacy scores of participants in post-intervention were significantly higher than that in pre-intervention across all domain's healthcare, disease prevention, and health promotion as well as the total score (p < 0.001). A significant reduction in the proportion of caregivers reporting PHQ-9 moderately severe/severe depression post-intervention was demonstrated (10.2 vs. 6.1%, respectively (p ≤ 0.001). No significant differences were observed pre and post-intervention across four 5Q-5D-5L health dimensions: mobility, self-care, usual activities, and pain/discomfort. Regarding anxiety/depression as measured by 5Q-5D-5L the proportion of participants who reported having moderate, severe, and extreme problems in pre- and post-intervention was statistically significant (32 vs. 24%), respectively (p = 0.0028). CONCLUSION: Co-designed digital resources can reduce health literacy inequities and improve psychological outcomes for cancer caregivers.
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BACKGROUND: Fatigue among patients with end-stage kidney disease (ESKD) receiving haemodialysis imposes a substantial burden on patients' quality of life and expected treatment outcomes. This study explores the perspective on ESKD-related fatigue and contributing factors among Omani patients receiving haemodialysis. METHODS: An exploratory qualitative design was used. Participants (N = 25) were recruited from two Omani haemodialysis centres, and data were collected through semi-structured interviews, which were transcribed and analysed using a thematic analysis approach. NVivo 11 is used to manage qualitative data and create memos, nodes, and codes. RESULTS: Findings highlighted three themes: (i)"Inevitability of fatigue," (ii)"Contributors to physical fatigue," and (iii)"Contributors to mental fatigue." Theme one alluded to the inevitability of fatigue and the unique experience encountered by patients. Theme two addressed the physical fatigue associated with ESKD-related factors, such as chronically low haemoglobin levels, and the exhausting impact caused by the frequency and travelling distance for treatment sessions. Theme three, mental fatigue, was notably driven by heightened emotional disturbance, encompassing frustration, guilt, anxiety, and distress, that in turn impacted family interactions, frequently triggering anger and remorse. Moreover, mental fatigue is a result of disturbances in expressing physical sexuality in marriage, as physical fatigue was found to be a significant contributor to unsatisfactory sexual experiences and, thus, straining the relationships between couples. CONCLUSIONS: This study offers an explanation of fatigue among Omani patients with ESKD who are receiving haemodialysis. The study emphasises close links between physiological change, the haemodialysis process, and mental tiredness, together with their contribution to supporting the need for a holistic approach and care strategies in managing these patients and promoting patient and family well-being.
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Fatiga , Fallo Renal Crónico , Investigación Cualitativa , Diálisis Renal , Humanos , Masculino , Femenino , Omán , Fatiga/etiología , Fatiga/psicología , Fallo Renal Crónico/terapia , Fallo Renal Crónico/psicología , Persona de Mediana Edad , Adulto , Fatiga Mental/etiología , Anciano , Calidad de Vida , Ansiedad/etiologíaRESUMEN
OBJECTIVE: Early-onset colorectal cancer (CRC) incidence in adults aged under 50 is increasing. There is a critical lack of knowledge regarding the challenges faced by early-onset CRC patients and their experiences of treatment. The aim of this study was to explore the lived experiences of individuals receiving treatment for early-onset CRC, and the resulting impact on their lives. METHODS: Semi-structured interviews of patients with early-onset CRC in the UK (n = 21) were conducted from August 2021 to March 2022. Interviews were recorded and transcribed verbatim. Data were analysed using thematic analysis. RESULTS: Results identified four key themes: (1) early-onset CRC treatment results in sudden physical, psychological and social impacts in all aspects of life; (2) early-onset CRC patients have unique supportive care needs which are not recognised in current practice; (3) there is a need for tailored information; (4) a lack of support was identified in the areas of mental health, sexual health and fertility. CONCLUSIONS: Our study highlights numerous unique issues experienced by the early-onset CRC patient group during treatment. There is a need for change in clinical practice, along with the development of international guidelines and tailored resources for both patients and healthcare professionals, in order to improve care.
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Neoplasias Colorrectales , Investigación Cualitativa , Humanos , Neoplasias Colorrectales/psicología , Neoplasias Colorrectales/terapia , Masculino , Femenino , Adulto , Persona de Mediana Edad , Edad de Inicio , Apoyo Social , Calidad de Vida/psicología , Reino Unido , Entrevistas como AsuntoRESUMEN
OBJECTIVE: This review aims to synthesize the experiences of informal caregivers of people with dementia in low- and middle-income countries (LMICs). INTRODUCTION: Globally, the burden of dementia is increasing disproportionately in LMICs. Informal caregivers play a vital role and face multiple challenges in LMICs, even though they also often lack the awareness and skills to provide adequate care for people living with dementia. Many LMICs have limited resources and caregivers lack support services. Understanding their experiences and perceptions may improve interventions, helping caregivers to better support those living with dementia. INCLUSION CRITERIA: Studies from all settings in LMICs will be considered. Qualitative data from qualitative or mixed methods studies that explore caregivers' experiences and perceptions will be included in this review. Participants are informal caregivers of people diagnosed with dementia at any stage, regardless of age, gender, or their relationship with people living with dementia. METHODS: This review will follow the JBI methodology for a qualitative systematic reviews, with meta-aggregation as the synthesis method. The review will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A 3-step search strategy will be used to locate published and unpublished studies in MEDLINE, CINAHL, Embase, PsycINFO, AgeLine, LILACS, African Index Medicus, ProQuest Dissertations and Theses, Open Dissertations, Web of Science Core Collection, and Google Scholar. There will be no date or language limitations. All studies will be screened against the inclusion criteria and data will be extracted and critically appraised for methodological quality by 2 independent reviewers using JBI tools. Confidence in the final synthesized findings will be assessed using the ConQual approach. REVIEW REGISTRATION: PROSPERO CRD42023453814.
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Cuidadores , Demencia , Países en Desarrollo , Revisiones Sistemáticas como Asunto , Humanos , Cuidadores/psicología , Demencia/enfermería , Demencia/psicología , Investigación CualitativaRESUMEN
BACKGROUND: Family carers face challenges that could significantly affect their health and the health of those they care for. However, these challenges are not well documented in low-income settings, including Uganda. We explored the challenges of caring for someone with chronic non-communicable disease (NCD) in Uganda. METHODS: We conducted a qualitative exploratory study at Hospice Africa, Uganda (an urban setting) and Hampton Health Center (a rural setting) in Uganda in February and March 2021. Family carers (n = 44) were recruited using snowball and purposive sampling techniques. Data were collected using focus group discussions and in-depth interviews, gathering family carer perspectives of (a) their caring role (b) their support needs, and (c) attitudes of the wider community. In total, four focus group discussions and 10 individual interviews were completed. RESULTS: The average age of carers was 46 years old. The majority of family care was provided by female relatives, who also experienced intersectional disadvantages relating to economic opportunities and employment. Family carers carried a huge burden of care, experiencing significant challenges that affected their physical health, and material and emotional well-being. These challenges also affected the quality of care of the patients for whom they cared. Carers struggled to provide for the basic needs of the patient including the provision of medication and transport to health facilities. Carers received no formal training and limited support to carry out the caring role. They reported that they had little understanding of the patient's illness, or how best to provide care. CONCLUSIONS: As NCDs continue to rise globally, the role of family caregivers is becoming more prominent. The need to support carers is an urgent concern. Family carer needs should be prioritised in policy and resource allocation. The need for a carer's toolkit of resources, and the enhancement of community support, have been identified.
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Cuidados Paliativos al Final de la Vida , Enfermedades no Transmisibles , Humanos , Femenino , Persona de Mediana Edad , Cuidadores/psicología , Enfermedades no Transmisibles/terapia , Uganda , Pobreza , Familia/psicologíaRESUMEN
BACKGROUND: Health outcomes among Agent Orange/dioxin (dioxin) victims are significant due to many individuals requiring daily assistance, informal care, and rehabilitation support. This study aimed to identify the information needs of informal caregivers of dioxin victims in Vietnam. METHODS: A cross-sectional study was conducted in Quynh Phu district, Thai Binh province - an area with a large number of dioxin victims, from June 2019 to June 2020. Quantitative data were collected from 124 caregivers of victims via structured interviews. Qualitative data were collected using semi-structured interview guides with in-depth interviews (IDI) (n = 36) and two focus group discussions (FGD) (n = 12). RESULTS: The results demonstrated that all caregivers of dioxin victims were family members, predominantly older (71.8%), 61.5 years old on average, living on low incomes (87.9%), and were farmers (80.7%). Almost all participants (96.8%) reported having information needs, particularly concerning dioxin's harms, nutrition, dioxin-related policies and rehabilitation, and psychological support for patients. Caregivers reported that they would like to receive information via health staff counselling (85.0%), television (75.0%), and community loudspeaker (65.8%). Notably, the majority of caregivers reported the need for information regarding psychological support (70.0%). These findings are consistent with qualitative data, which identify an urgent need to provide information, especially through health staff and digital resources. CONCLUSION: Many families with dioxin victims lived with little support and information, highlighting their high demand for information about care and rehabilitation. Thus, the healthcare system should promote information support, policy, and psychological support for caregivers and victims. An online support system for caregivers and victims is also recommended.
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Dioxinas , Dibenzodioxinas Policloradas , Humanos , Persona de Mediana Edad , Cuidadores , Vietnam , Estudios TransversalesRESUMEN
OBJECTIVES: The COVID-19 pandemic placed severe strain on cancer carers resulting in an urgent need for information and support. METHODS: The Santin 2019 6-step co-design model was used to rapidly modify an existing online cancer carers resource. Draft content of a COVID-19 module was created via two workshops and six meetings with an expert advisory team (Step 1). This content was then produced into videoed testimonials (Step 2). A module prototype was reviewed by volunteers (Step 3) and modified based on feedback (Step 4). User-testing occurred via two online feedback sessions (Step 5) and modifications were made (Step 6). All steps were audio recorded, transcribed verbatim and analysed thematically. RESULTS: A COVID-19 support, and information module was rapidly co-designed by n = 45 stakeholders (n = 11 workshop 1 and 2 (3 carers/14 professionals), n = 6 advisory committee (1 carer/5 professionals), n = 4 video content (1 carer/3 professionals) and n = 24 feedback sessions (5 carers/19 professionals). The module contained vaccination information, infection control and how to manage the psychosocial impact of restrictions. Information was delivered in 4 short videos with links to up-to-date guidance and information services. Participants identified that the module included all key information for carers in an accessible and informative way. The use of videos was viewed as an emotive and reassuring. CONCLUSIONS: During a global pandemic, cancer carers urgently required tailored information. Co-designed online resources allow service providers to rapidly respond to emerging and unprecedented issues and provide urgent information and support.
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COVID-19 , Neoplasias , Humanos , Cuidadores/psicología , Pandemias , Neoplasias/terapia , Neoplasias/psicología , Servicios de InformaciónRESUMEN
Human papillomavirus (HPV) plays an essential role in cervical cancer development. Angola has a high cervical cancer incidence rate (36.1 per 100,000); therefore, knowledge of HPV among clinicians is essential for the prevention of cervical cancer and educating at-risk individuals. This study aimed to evaluate knowledge of HPV among healthcare professionals in Angola. A 44-item questionnaire was distributed to 65 healthcare professionals who attended a conference on the cancer burden in Angola. Non-parametric and multiple regression analyses were conducted. Of the participants (55.6%) were male, and 33.3% were aged 31-40 years, 56.3% had an undergraduate degree, and 35.9% had a postgraduate degree. All participants worked in healthcare in academic and/or clinical settings, with 36.7% in joint contracts. Most (62.2%) knew that early sexual debut increases the risk of contracting HPV, and HPV vaccines are most effective if administered before sexual debut. However, there was limited knowledge regarding the virus transmission. The mean HPV knowledge score was 11.08 ± 8.76 and knowledge was higher among older healthcare workers (>50 years) with a postgraduate degree and working in a clinical role. Overall, HPV knowledge was limited among the respondents. Policymakers should consider promoting knowledge and targeted public health initiatives among healthcare professionals in Angola.
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Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Neoplasias del Cuello Uterino , Femenino , Humanos , Masculino , Virus del Papiloma Humano , Neoplasias del Cuello Uterino/prevención & control , Neoplasias del Cuello Uterino/epidemiología , Infecciones por Papillomavirus/epidemiología , Infecciones por Papillomavirus/prevención & control , Angola/epidemiología , Conocimientos, Actitudes y Práctica en Salud , Encuestas y Cuestionarios , Personal de Salud , Vacunas contra Papillomavirus/uso terapéutico , VacunaciónRESUMEN
The COVID-19 pandemic has greatly affected the delivery of cancer care. Due to social restrictions and reductions in health service contact, it is expected that the burdens experienced by informal carers have risen. This study provides an analysis of cancer carer's experiences and needs as a consequence of the pandemic. An online mixed method design was used. The survey included open-ended responses to explore carer's experiences and measures of health status (EQ-5D-5L), Quality of Life (WHOQoL-BREF) and impact of COVID-19. Open-ended responses were analysed thematically according to Miles and Huberman techniques and quantitative data were analysed descriptively. One hundred and ninety-six cancer carers participated in the online survey. Mixed method analysis demonstrated that carers were experiencing major difficulties. Of these n = 142/72.4% experienced challenges related to anxiety and depression; 35.2% rated these problems as slight with 25% rating these as moderate and 11.2% as severe. Qualitative analysis identified significant and sustained negative impacts of the pandemic on psychological health, social isolation, finance and access to health services with carers requiring urgent information and support. Carer's challenges have deepened throughout the COVID-19 pandemic. There is an urgent need to develop innovative ways to provide support for carers to provide palliative and supportive care at home now and during recovery from the pandemic. Due to the need for infection control meaningful development and integration of urgent digital technology might be the most feasible solution.
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COVID-19 , Neoplasias , COVID-19/epidemiología , Cuidadores/psicología , Humanos , Neoplasias/epidemiología , Neoplasias/terapia , Pandemias , Calidad de VidaRESUMEN
Background: Challenges remain in the implementation of family-based health insurance (FHI) - the key strategy for achieving universal health coverage in Vietnam. Objectives: To explore the experiences of and factors influencing enrolment in FHI among informal sector workers (ISW) in a rural district in Vietnam. Methods: A cross-sectional study was conducted from January to June 2016 in Tien Du, a rural district in Bac Ninh province. Secondary data were extracted from provincial social insurance databases to identify the rate of FHI among ISW in the district. Qualitative data were collected from 55 participants: 20 semi-structured in-depth interviews (IDI) and 6 focus group discussions (FGD). Data were transcribed verbatim. Thematic analysis was conducted. Results: Only 25.1% of ISW had FHI. Those individuals with FHI tended to be older or already experiencing health problems or have 'risky' jobs. The key determinants of adverse selection from different levels included: individual, family and health system. Conclusions: Low health insurance uptake remains an issue for ISW. Policy makers should consider raising awareness of FHI and improve the quality of primary health services, simplify the procedures of enrolment and claim for ISW. Additional government premium subsidy is required to increase FHI enrolment among ISW.
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Sector Informal , Seguro de Salud , Estudios Transversales , Humanos , Cobertura Universal del Seguro de Salud , VietnamRESUMEN
OBJECTIVE: To gather preliminary qualitative data that will assist in the codesign and development of a new informational and supportive website to assist informal cancer carers in Australia. DESIGN AND SETTING: Utilising a previously tested codesign process, informal carers' experiences and perspectives, including those of healthcare professionals', were examined via focus groups and/or interviews. Data were analysed via thematic analysis. PARTICIPANTS: Rural (n=9) and urban (n=11) carers', and healthcare professionals' (n=8) perspectives were collected. Carers participated in a focus group (n=9) or telephone interview (n=11). Healthcare professionals completed an interview (n=6) or online survey (n=2). RESULTS: Rural and urban carers typically felt ill prepared for their multitudinal caregiving responsibilities. Supporting patient-to-healthcare professional liaisons could especially challenge. Carers' biopsychosocial and fiscal strains were affected by patients' hardships and available informal supports. Rural carers described greater social support than urban carers. Both rural and urban carers also described discontentment related to a carer neglecting healthcare system. Both carers and healthcare professionals endorsed the need for a user-friendly, carer-specific website encompassing practical information and resources, peer-driven advice and evidence-based illness information, tailored to the Australian context. CONCLUSIONS: Carers and healthcare professionals recognise the pressing need for an Australian, cancer carer-specific online resource. Findings will inform the next phase, where a resource will be designed, developed and tested.
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Cuidadores , Neoplasias , Australia , Atención a la Salud , Humanos , Neoplasias/terapia , Investigación Cualitativa , Apoyo SocialRESUMEN
BACKGROUND: Vietnam has experienced a rapid increase in cancer incidence with many cancers (70%) being diagnosed at a late stage. The majority of physical and psychosocial care is provided by caregivers with minimal professional input. Due to limited resources in hospitals and social and cultural norms regarding caregiving in Vietnam, caregivers provide a range of supportive functions for family members diagnosed with cancer. OBJECTIVES: This study sought to provide empirical evidence on the self-identified unmet needs of caregivers of inpatients in national oncology hospitals in Vietnam. METHODS: Focus groups and in-depth interviews were conducted with caregivers (n = 20) and health care providers (n = 22) in national oncology hospitals in Hanoi and Ho Chi Minh City. Data was collaboratively analysed using thematic analysis. Findings were validated through key stakeholder group discussions with both caregivers and healthcare providers across multiple regions in Vietnam. RESULTS: Analysis demonstrated that the burden of informal care is high with many caregivers managing patient's severe and complex health needs with minimal support. Caregivers highlighted four main areas of critical need: (i) challenges in providing long term care, particularly in hospital and in-patient settings, such as accessing comfortable facilities, accommodation and finance; (ii) information needs about cancer, treatment, and nutrition; (iii) support for the emotional impact of cancer; and (iv) training about how to provide care to their family members during treatment and recovery phases. CONCLUSIONS: Caregivers provide invaluable support in supporting people with a cancer diagnosis, particularly given wider systemic challenges in delivering cancer services in Vietnam. Increasing visibility and formal support is likely to have both a positive impact upon the health and wellbeing of caregivers, as well as for cancer patients under their care. Given its absence, it is critical that comprehensive psychosocial care is developed for caregivers in Vietnam.
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Cuidadores , Neoplasias , Familia , Humanos , Neoplasias/terapia , Investigación Cualitativa , Vietnam/epidemiologíaAsunto(s)
COVID-19 , Neoplasias , Enfermedades no Transmisibles , Cuidadores , Humanos , Neoplasias/terapia , SARS-CoV-2 , VietnamRESUMEN
OBJECTIVES: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development. METHODS: Semi-structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals. Findings were verified via workshops with carers (n = 11) and health care professionals (n = 28) in five oncology hospitals representing different regions of Vietnam. Data was analyzed collaboratively by an international team of researchers according to thematic analysis. RESULTS: Family caregivers in Vietnam provide an integral role in the delivery of inpatient cancer care. In the hospital environment families are responsible for multiple roles including feeding, hydration, changing, washing, moving, wound care and security of personal belongings. Central to this role is primary decision making in terms of treatment and end-of-life care; relaying information, providing nutritional, emotional and financial support. Families are forced to manage severe complications and health care needs with minimal health literacy and limited health care professional input. CONCLUSIONS: Understanding context and the unique roles of family caregivers of people living with cancer is critical in the development of supportive services. As psycho-oncology develops in low and middle income contexts, it is essential that family caregiver roles are of significant importance.
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Cuidados Paliativos al Final de la Vida , Neoplasias , Cuidado Terminal , Cuidadores , Familia , Humanos , Neoplasias/terapia , Investigación Cualitativa , VietnamRESUMEN
BACKGROUND: Cancer diagnosis, treatment and survivorship is multifaceted, and the cancer patient experience can serve as a key indicator of healthcare performance and quality. The purpose of this paper was to analyse free-text responses from the second Northern Ireland Cancer Patient Experience Survey (NICPES) in 2018, to understand experiences of care, emerging themes and identify areas for improvement. METHODS: A 72-item questionnaire (relating to clinical care experience, socio-demographics and 3 free-text questions) was distributed to all Health & Social Care Northern Ireland patients that met the inclusion criteria (≥ 16 years old; confirmed primary diagnosis of cancer and discharged between 1st May and 31st October 2017) in June 2018. Participants could complete the questionnaire online or access a free telephone support line if required. Open-ended free text responses were analysed thematically to identify common themes. Free text responses were divided into positive or negative comments. RESULTS: In total, 3,748 people responded to the survey, with 2,416 leaving at least one free text comment (69 %). Women aged 55-74 years were most likely to comment. Overall, 3,644 comments were left across the three comments boxes, which were categorised as either positive (2,462 comments; 68 %) or negative / area for improvement (1,182 comments; 32 %). Analysis of free text responses identified six common themes (staff; speed [diagnosis and treatment]; safety; system; support services and specific concerns), which were all related to the overarching theme of survival. Staff was the largest single theme (1,458 responses) with overwhelmingly positive comments (1,322 responses; 91 %), whilst safety (296 negative comments; 70 %) and system (340 negative comments; 81 %) were predominantly negative. Negative comments relating to primary care, aftercare and the cancer system were reported. CONCLUSIONS: The high response rate to the free text comments indicates patients were motivated to engage. Analysis indicates most comments provided were positive in nature. Most survey respondents reported a positive experience in relation to staff. However, there were a number of areas for improvement including the aftercare experience, and a perceived disconnect between primary care and cancer services. These results can help inform the effective delivery of cancer services in Northern Ireland.
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Neoplasias , Envío de Mensajes de Texto , Adolescente , Femenino , Humanos , Neoplasias/terapia , Irlanda del Norte/epidemiología , Evaluación del Resultado de la Atención al Paciente , Satisfacción del Paciente , Encuestas y CuestionariosRESUMEN
BACKGROUND: Over the recent decades, Vietnam has attained remarkable achievements in all areas of health care. However, shortcomings including health disparities persist particularly with a rapidly aging population. This has resulted in a shift in the disease burden from communicable to noncommunicable diseases such as dementia, cancer, and diabetes. These medical conditions require long-term care, which causes an accelerating crisis for the health sector and society. The current health care system in Vietnam is unlikely to cope with these challenges. OBJECTIVE: The aim of this paper was to explore the opportunities, challenges, and necessary conditions for Vietnam in transforming toward a patient-centered care model to produce better health for people and reduce health care costs. METHODS: We examine the applicability of a personalized and integrated Bespoke Health Care System (BHS) for Vietnam using a strength, weakness, opportunity, and threat analysis and examining the successes or failures of digital health care innovations in Vietnam. We then make suggestions for successful adoption of the BHS model in Vietnam. RESULTS: The BHS model of patient-centered care empowers patients to become active participants in their own health care. Vietnam's current policy, social, technological, and economic environment favors the transition of its health care system toward the BHS model. Nevertheless, the country is in an early stage of health care digitalization. The legal and regulatory system to protect patient privacy and information security is still lacking. The readiness to implement electronic medical records, a core element of the BHS, varies across health providers and clinical practices. The scarcity of empirical evidence and evaluation regarding the effectiveness and sustainability of digital health initiatives is an obstacle to the Vietnamese government in policymaking, development, and implementation of health care digitalization. CONCLUSIONS: Implementing a personalized and integrated health care system may help Vietnam to address health care needs, reduce pressure on the health care system and society, improve health care delivery, and promote health equity. However, in order to adopt the patient-centered care system and digitalized health care, a whole-system approach in transformation and operation with a co-design in the whole span of a digital health initiative developing process are necessary.
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Atención a la Salud , Promoción de la Salud , Anciano , Tecnología Biomédica , Humanos , Atención Dirigida al Paciente , VietnamAsunto(s)
Salud Global , Investigadores , Conducta Cooperativa , Humanos , Irlanda del Norte , VietnamRESUMEN
OBJECTIVE: Patients undergoing haemodialysis may experience troubling symptoms such as fatigue, anxiety, depression and sleep quality, which may affect their quality of life. The main objective of this study is to determine the prevalence of fatigue, anxiety, depression and sleep quality among patients receiving haemodialysis during the coronavirus disease 2019 (COVID-19) pandemic, and to explore the contributing predictors. METHODS: A cross-sectional and descriptive correlational design using Qualtrics software was performed. Data were collected using the Functional Assessment of Cancer Therapy-Fatigue (FACT-F), the Hospital Anxiety and Depression Scale (HADS) and the Pittsburgh Sleep Quality Index (PSQI). Logistic regression analyses were used to explore the predictors that were associated with fatigue, anxiety, depression and sleep quality. RESULTS: Of the 123 patients undergoing haemodialysis who participated, 53.7% (n = 66) reported fatigue, 43.9% (n = 54) reported anxiety, 33.3% (n = 41) reported depression and 56.9% (n = 70) reported poor sleep. Fatigue, anxiety and sleep quality (P < .05) were significantly associated with being female, and whether family members or relatives were suspected or confirmed with COVID-19. Logistic regression showed that being within the age group 31-40, having a secondary education level, anxiety, depression and sleep quality were the main predictors affecting the fatigue group. CONCLUSION: Fatigue, anxiety, depression and sleep quality are significant problems for patients receiving haemodialysis during the COVID-19 pandemic. Appropriate interventions to monitor and reduce fatigue, psychological problems and sleep quality amongst these patients are needed. This can help to strengthen preparations for responding to possible future outbreaks or pandemics of infectious diseases for patients receiving haemodialysis.
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Ansiedad/epidemiología , COVID-19 , Depresión/epidemiología , Fatiga/epidemiología , Fallo Renal Crónico/terapia , Sueño , Adolescente , Adulto , Factores de Edad , Escolaridad , Familia , Femenino , Humanos , Fallo Renal Crónico/fisiopatología , Fallo Renal Crónico/psicología , Modelos Logísticos , Masculino , Persona de Mediana Edad , Omán/epidemiología , Diálisis Renal , Factores de Riesgo , SARS-CoV-2 , Encuestas y Cuestionarios , Adulto JovenRESUMEN
PURPOSE: The aim of this study was to investigate patient experiences of living with monoclonal gammopathy of undetermined significance (MGUS). Living with a premalignant condition such as MGUS may elicit negative psychosocial effects including increased anxiety and fear of progression to cancer. To date, no study utilising qualitative methodology has explored the lived experiences of MGUS patients. METHODS: Data was collected via two focus groups and six telephone interviews. MGUS patients (n=14) were recruited via nurse-led haematology telephone-clinics in Northern Ireland. Interviews were transcribed verbatim and the data subjected to thematic analysis. OUTCOME: Thematic analysis identified 3 overarching themes; (1) The psychosocial impact of an MGUS diagnosis, (2) Knowledge of MGUS and (3) Experiences of MGUS health services. Patients with MGUS reported experiencing poor psychological adjustment to their condition particularly at the point of diagnosis and approaching follow-up appointments. Feelings of isolation, poor information-provision, increased uncertainty and limited psychosocial support for MGUS patients were also reported. Patients did however reflect positively on their experience of being followed up via nurse-led telephone clinics. CONCLUSIONS: Provision of patient friendly information guides at diagnosis, and additional psychosocial support services such as nurse-led telephone clinics and coordinated patient groups may help MGUS patients adjust better to their diagnosis and in doing so improve quality of life in this patient population.