Fragmented Health Care System Research Articles

Cytotoxicity of water supply in a Palestinian refugee camp and a Syrian informal tented settlement in Lebanon.

Deficient water, sanitation, and hygiene (WASH) significantly account for a high burden of disease across the globe. Lebanon, an Eastern Mediterranean lower-middle-income country with a polluted environment, a fragmented healthcare system, and an ongoing severe economic crisis, faces serious challenges in sustaining safe water supplies, especially in vulnerable communities, while also hosting the world highest refugee population per capita. This study aimed to examine the mutagenicity, and the estrogenic and androgenic activities of water supplies, across both a Palestinian refugee camp and a Syrian informal settlement. Water samples were collected from two targeted camps in Dbayeh and Choueifat, North and South of the Capital City Beirut, respectively, between the months of September and October 2022. Microbial and physicochemical properties of samples were determined, including fecal contamination, total dissolved solids, and various minerals and salts. Organic pollutants were extracted using pre-packed solid phase extraction (SPE) columns, and then mutagenicity of extracts was examined using the Ames test in two Salmonella typhi bacterial strains. The estrogenic and androgenic activities of extracts were assessed using the yeast estrogen and androgen screen tests assays (YES/YAS). Results show excessive levels of total coliforms and total dissolved solids (TDS) in samples from both sites. In addition, the water supply from the Dbayeh Palestinian refugee camp is mutagenic, while the water supply from the Choueifat Syrian informal settlement shows anti-androgen activity. Our findings provide valuable WASH baseline data in two major vulnerable communities in Lebanon, and highlight the importance of a water toxicity testing approach concomitant with a water safety plan, based on a holistic strategy that covers all stages of the water supply chain.

Mapping the Common Barriers to Optimal COPD Care in High and Middle-Income Countries: Qualitative Perspectives from Clinicians.

Chronic obstructive pulmonary disease (COPD) poses a significant global health burden despite being largely preventable and treatable. Despite the availability of guidelines, COPD care remains suboptimal in many settings, including high-income countries (HICs) and upper-middle-income countries (UMICs), with varied approaches to diagnosis and management. This study aimed to identify common and unique barriers to COPD care across six countries (Australia, Spain, Taiwan, Argentina, Mexico, and Russia) to inform global policy initiatives for improved care. COPD care pathways were mapped for each country and supplemented with epidemiological, health-economic, and clinical data from a targeted literature review. Semi-structured interviews with 17 respiratory care clinicians were used to further validate the pathways and identify key barriers. Thematic content analysis was used to generate the themes. Six themes were common in most HICs and UMICs: "Challenges in COPD diagnosis", "Strengthening the role of primary care", "Fragmented healthcare systems and coordination challenges", "Inadequate management of COPD exacerbations", "Limited access to specialized care" and, "Impact of underfinanced and overloaded healthcare systems". One theme, "Insurance coverage and reimbursement challenges", was more relevant for UMICs. HICs and UMICs differ in patient and healthcare provider awareness, primary care involvement, spirometry access, and availability of specialized care. Both face issues with healthcare fragmentation, guideline adherence, and COPD exacerbation management. In addition, UMICs also grapple with resource limitations and healthcare infrastructure challenges. Many challenges to COPD care are the same in both HICs and UMICs, underscoring the pervasive nature of these issues. While country-specific issues require customized solutions, there are untapped possibilities for implementing global respiratory strategies that support countries to manage COPD effectively. In addition to healthcare system-level initiatives, there is a crucial need for political prioritization of COPD to allocate the essential resources it requires.

Technology-Enabled Collaborative Care for Diabetes and Mental Health (TECC-D): Feasibility and Satisfaction of a Co-Re-Designed Integrated Virtual Care Model

Objective: For individuals living with Type-2 Diabetes (T2D), mental health issues such as distress, anxiety, and depression are common. However, current models of care require those living with T2D and mental health issues to navigate a fragmented healthcare system to receive physical and mental health services. This is especially true in rural areas where there are additional barriers at the individual and provider level. To address these gaps, we co-re-designed a person-centred Technology-Enabled Collaborative Care for Diabetes and Mental Health (TECC-D) model through iterative input. 
 Co-Re-Design: To meet the complex needs of those living with T2D and mental health issues, a co-re-design process was utilized. This involved building on existing assets, including a previously co-designed collaborative care model that was re-designed for this population with input from three people with lived experience of diabetes, diabetes and mental health care providers, and community stakeholders. This team supported the design and implementation of the model throughout the study duration.
 Methods: In this explanatory sequential feasibility trial, the TECC-D model leveraged existing assets including widely available technology (telephone, web-conferencing) to integrate T2D and mental health support through weekly, virtual health coaching sessions with a Certified Diabetes Educator, supported by a multidisciplinary virtual care team for 8 weeks. Primary outcomes included the feasibility and acceptability of the TECC-D model with exploratory outcomes including changes in mental health, substance use, and physical health behaviours collected at baseline, 4, 8, and 12 weeks. Provider and partner experience and satisfaction were also explored through a qualitative descriptive study.
 Results: 31 participants were recruited and completed the program between June 2021 and June 2022. Study findings demonstrate that the TECC-D model is a feasible and scalable care solution that empowers individuals living with T2D and mental health issues to take an active role in improving their physical and mental health. Participants and providers described program components (e.g., health coaching, virtual care team) and program delivery (e.g., frequency and duration of the program) positively. This included: 1) seeing virtual care as practical and effective for managing routine care needs; 2) feeling that having an expert care coach supported by a virtual care team was “over and above” the care that participants had previously experienced; 3) building expertise and capacity within the care team specific to diabetes and mental health; and 4) recognizing that integrated care is “missing from diabetes care” and that in offering clinical integration, participants felt “much more than just the sum of my parts”. 
 Conclusions: Utilizing widely available technology in the current health system and engaging existing primary and community-based care assets, this model of care was found to be both feasible and acceptable by participants, providers, and patient partners and may improve the lives of individuals living with T2D and mental health issues.

Where I am from matters: factors influencing behavioral and emotional changes in autistic individuals during COVID-19 in Latin America.

The COVID-19 pandemic brought an increased incidence of disease and mortality in the world at large, making it a particularly salient and stressful life event. For those individuals residing in Latin America, the pandemic was met with fragmented healthcare systems, economic downturn, and sociopolitical crisis which puts autistic individuals at risk for more detrimental outcomes. Behavioral and emotional challenges experienced by autistic individuals at the beginning of the pandemic could later develop into more severe symptomatology as the pandemic progresses. The present study aimed to explore changes in dysregulated (overt and internalizing) behaviors and preoccupation with getting sick during the COVID-19 pandemic among autistic children in 7 Latin American countries. Sample consisted of 1,743 caregivers, residing in: Argentina (n = 677, 38.8%) Brazil (n = 156, 9%), Chile (n = 251, 14.4%), Dominican Republic (n = 171, 9.8%), Mexico (n = 126, 7.2%), Uruguay (n = 259, 14.9%) and Venezuela (n = 103, 5.9%). The majority of caregivers who completed the questionnaire were mothers (85.1%), and most had a male autistic child (81.6%). A series of independent sample t-tests were conducted to assess country differences in dysregulated behaviors and preoccupation with getting sick. Linear regressions were conducted to identify which demographic characteristics and micro-level contextual factors predicted dysregulated overt behaviors and psychological changes. Contextual factors, such as country of residence, were related to preoccupation with getting sick and dysregulated behavior. Particularly, residing in Mexico and Brazil were related to changes in preoccupation with getting sick and mental health concerns. Coexistence predicted dysregulated internalizing behaviors, while being older significantly predicted preoccupation with getting sick. Increased screen time only predicted anxiety. Our findings highlight differences and predictions of behavioral challenges and psychological changes based on certain contextual factors and individual characteristics while experiencing severe life stressors such as a worldwide pandemic. This knowledge could help inform policies and decrees aimed at protecting those most vulnerable due to their increased difficulty adapting to change.

The economic impact of a local, collaborative, stepped, and personalized care management for older people with chronic diseases: results from the randomized comparative effectiveness LoChro-trial

BackgroundWithin the ageing population of Western societies, an increasing number of older people have multiple chronic conditions. Because multiple health problems require the involvement of several health professionals, multimorbid older people often face a fragmented health care system. To address these challenges, in a two-group parallel randomized controlled trial, a newly developed care management approach (LoChro-Care) was compared with usual care.MethodsLoChro-Care consists of individualized care provided by chronic care managers with 7 to 16 contacts over 12 months. Patients aged 65 + with chronic conditions were recruited from inpatient and outpatient departments. Healthcare utilization costs are calculated by using an adapted version of the generic, self-reporting FIMA©-questionnaire with the application of standardized unit costs. Questionnaires were given at 3 time points (T0 baseline, T1 after 12 months, T2 after 18 months). The primary outcome was overall 3-month costs of healthcare utilization at T1 and T2. The data were analyzed using generalized linear models with log-link and gamma distribution and adjustment for age, sex, level of care as well as the 3-month costs of care at T0.ResultsThree hundred thirty patients were analyzed. The results showed no significant difference in the costs of healthcare utilization between participants who received LoChro-Care and those who received usual care, regardless of whether the costs were evaluated 12 (adjusted mean difference € 130.99, 95%CI €-1477.73 to €1739.71, p = 0.873) or 18 (adjusted mean difference €192.99, 95%CI €-1894.66 to €2280.65, p = 0.856) months after the start of the intervention.ConclusionThis study revealed no differences in costs between older people receiving LoChro-Care or usual care. Before implementing the intervention, further studies with larger sample sizes are needed to provide robust evidence on the cost effects of LoChro-Care.Trial registrationGerman Clinical Trials Register (DRKS): DRKS00013904, https://drks.de/search/de/trial/DRKS00013904; date of first registration 02/02/2018.

Perceived knowledge, attitudes and practices regarding the medical consortium among medical staff in Sichuan, China: a cross-sectional survey

BackgroundIn China, fragmented and inefficient health care systems are common while quality resources are limited. To promote an organized, efficient system, the government launched a medical consortium policy to vertically integrate health care through the collaboration of different levels of medical care. Logically, medical staff’s knowledge, attitudes and practices (KAP) regarding the consortium are critical for its development. The objective of this study was to explore the KAP regarding the medical consortium among medical staff in a medical consortium in Sichuan Province, China.MethodsA cross-sectional survey was conducted. In total, 690 medical staff members in 3 cities of Sichuan Province, China, were interviewed from November 2018 to December 2018. The questionnaire consisted of 18 items, including 4 items related to perceived knowledge, 4 items related to attitudes and 2 items related to practices, and was rated on a 5-point Likert scale (one = strongly disagree/do not know, five = strongly agree/know).ResultsThe effective response sample was 640 copies of the questionnaire, and most medical staff members (92.50%) knew about the cooperation with other hospitals in the medical consortium. Medical staff scored differently on each item in the questionnaire, with the highest score being the item ‘agreeing with the ward rounds and clinical teaching and training organized by the leading hospital’ (4.54 ± 0.76), and the lowest score being the item ‘frequency in participating in ward rounds and clinical teaching organized by the leading hospital’ (2.83 ± 1.36). In addition, the effect of demographic characteristics on KAP was evaluated by stepwise multiple regression analysis, and a significant positive correlation was found between all the studied variables by Spearman’s correlation (p < 0.05).ConclusionsThis study showed that the attitudes toward and knowledge of the medical consortium significantly contribute to practices, satisfaction with the support work performed by the leading hospital and agreement of improvement after joining the medical consortium. Thus, to improve medical staff’s KAP and satisfaction, publicity and educational programs in medical consortia are necessary, and the leading hospital should attach importance to the informatization construction and demand of different medical staff members.Clinical trial registrationThere are no clinical trials in this study.

Lean and Safety Management: a Project to Improve the Continuity of Care for Chronic Patients

Enhancing the quality of care for chronic patients means guaranteeing the delivery of integrated care. Integrated health systems help overcome the fragmentation of care processes, by bridging the organisational, managerial, and informational gaps, with the final purpose of improving the access, quality, and continuity of services. Indeed, chronic patients require the assistance of multiple providers, referring to different levels of care (primary, secondary, or tertiary). However, hyper-specialised and fragmented healthcare systems hamper the achievement of these goals, resulting in suboptimal care, higher cost, and poor quality of care. The implementation of lean and safety management (L&amp;SM) within hospitals demonstrated its ability to improve efficiency, effectiveness, and patient satisfaction, through proactive identification and reduction of risks and wastes. The novelty lies in adopting this approach to act on integration and continuity between different levels of care. With this aim, a L&amp;SM project has been developed in a Spanish hospital. The project focuses on improving the discharge process from internal medicine to primary care, essential to prevent further patients’ readmissions. In fact, cooperation between the hospital and primary care is crucial to ensure continuity in chronic pathways, providing adequate assistance to patients’ healthcare and social needs. The first results show how this approach was instrumental to engage in the project all key actors involved in the pathways, overcoming departmental barriers, and enhancing continuity of care. Moreover, this approach facilitated the convergence of identified inefficiencies with the clinicians’ interests, focusing only on the aspects considered of primary importance, such as the communication between the hospital and primary care. The expected outcomes encompass the achievement of a better understanding of the process, the identification of the criticalities in terms of risks and waste, the proposal and implementation of improvement interventions. This project represents an innovative attempt to implement L&amp;SM outside of hospital boundaries to improve new performance dimensions, focusing on integration and continuity of care.

Organizational structures influencing timely recognition and acknowledgment of end-of-life in hospitals – A qualitative study of nurses' and doctors’ experiences

PurposeHealthcare personnel's timely recognition and acknowledgment of end-of-life (EOL) is fundamental for reducing futile treatment, enabling informed decisions regarding the last days or weeks of life, and focusing on high-quality palliative care. The aim of this study is to explore and describe nurses' and doctors' experiences of how organizational structures in hospitals influence timely recognition and acknowledgment of EOL. MethodsA qualitative explorative design was applied, with data collected through 12 individual in-depth interviews using a semi-structured interview guide. A total of 6 nurses and 6 doctors were strategically recruited from medical and surgical wards in a Norwegian hospital. Qualitative content analysis was used. ResultsThe analysis revealed the theme The importance of hospital organizational structures in timely recognition and acknowledgment of EOL and a subtheme comprising three areas of organizational structures influencing timely recognition and acknowledgment of EOL; Challenges to and demands of continuity, collaboration, and time. ConclusionsThe study's results show challenges in identifying when cancer patients approach the last weeks and days of life within hospital wards. For nurses and doctors to be able to recognize and acknowledge EOL, continuity of care, collaboration, and time is needed. A fragmented healthcare system, with a predominant focus on treatment and cure, may prevent cancer patients from receiving timely palliative, care causing unnecessary suffering.

Drug Product and Drug Substance (CADIFA) Registration process in Brazil

There is a significant demand for improved healthcare and advanced pharmaceuticals in Brazil, presenting lucrative opportunities for foreign investors. However, engaging in business activities in Brazil can be challenging due to various factors. The process of registering pharmaceutical products in the country is time-consuming. Moreover, the highly regulated, complex, and fragmented Brazilian healthcare system, which is prone to corruption, can pose significant difficulties for small and medium-sized enterprises lacking the necessary financial resources and market knowledge. To comply with regulations, companies must provide detailed information about their drug products, including specifications, leaflets/labels, precautions, and other crucial details, all of which must be submitted in Portuguese in a comprehensive dossier. It typically takes close to a year to complete the medical registration process. In Latin America, specifically Brazil, Argentina, and Chile, there is a push to promote the registration of generic products by reducing the associated costs. Despite the obstacles and issues faced, Brazil's population of nearly 200 million people, its strategic position within Latin America, and its growing economy collectively present an appealing and promising market for various pharmaceutical sectors, offering potential for profitability.

National dengue surveillance, Cambodia 2002-2020.

Global dengue incidence has increased dramatically over the past few decades from approximately 500 000 reported cases in 2000 to over 5 million in 2019. This trend has been attributed to population growth in endemic areas, rapid unplanned urbanization, increasing global connectivity, and climate change expanding the geographic range of the Aedes spp. mosquito, among other factors. Reporting dengue surveillance data is key to understanding the scale of the problem, identifying important changes in the landscape of disease, and developing policies for clinical management, vector control and vaccine rollout. However, surveillance practices are not standardized, and data may be difficult to interpret particularly in low- and middle-income countries with fragmented health-care systems. The latest national dengue surveillance data for Cambodia was published in 2010. Since its publication, the country experienced marked changes in health policies, population demographics, climate and urbanization. How these changes affected dengue control remains unknown. In this article, we summarize two decades of policy changes, published literature, country statistics, and dengue case data collected by the Cambodia National Dengue Control Programme to: (i)identify important changes in the disease landscape; and (ii)derive lessons to inform future surveillance and disease control strategies. We report that while dengue case morbidity and mortality rates in Cambodia fell between 2002 and 2020, dengue incidence doubled and age at infection increased. Future national surveillance, disease prevention and treatment, and vector control policies will have to account for these changes to optimize disease control.

A task force for diagnosis and treatment of people with Alzheimer's disease in Latin America.

Alzheimer's disease (AD) represents a substantial burden to patients, their caregivers, health systems, and society in Latin America and the Caribbean (LAC). This impact is exacerbated by limited access to diagnosis, specialized care, and therapies for AD within and among nations. The region has varied geographic, ethnic, cultural, and economic conditions, which create unique challenges to AD diagnosis and management. To address these issues, the Americas Health Foundation convened a panel of eight neurologists, geriatricians, and psychiatrists from Argentina, Brazil, Colombia, Ecuador, Guatemala, Mexico, and Peru who are experts in AD for a three-day virtual meeting to discuss best practices for AD diagnosis and treatment in LAC and create a manuscript offering recommendations to address identified barriers. In LAC, several barriers hamper diagnosing and treating people with dementia. These barriers include access to healthcare, fragmented healthcare systems, limited research funding, unstandardized diagnosis and treatment, genetic heterogeneity, and varying social determinants of health. Additional training for physicians and other healthcare workers at the primary care level, region-specific or adequately adapted cognitive tests, increased public healthcare insurance coverage of testing and treatment, and dedicated search strategies to detect populations with gene variants associated with AD are among the recommendations to improve the landscape of AD.

Knowledge, Attitude and Perception about Adverse Drug Reaction Reporting System among Pharmacy Students in Bangladesh

Inadequate resources and a fragmented healthcare system in Bangladesh lead to the practice of almost non-reporting of adverse drug reactions (ADR). Pharmacists may offer service in this regard to strengthen pharmacovigilance if given the appropriate opportunity. To evaluate their preparedness, the current cross-sectional study aims to assess the knowledge, attitude and perception (KAP) of pharmacy students about the ADR reporting system. A validated self-administered and structured questionnaire was filled out online upon informed consent by 400 final-year and master-level participants from 22 public and private universities. Data analysis was done using the Statistical Package for Social Science (SPSS, v.23.0) and Microsoft Excel. The average knowledge score of the students came out as 2.93 (SD=0.6) out of 5. While fundamental knowledge regarding ADR was displayed well by the participants such as agreeing to ‘side effects and ADRs are different’ (85%), advanced conceptual understanding exhibited lacking. For example, variable like ‘distinguishing between ADR and an adverse drug event’, ‘not all ADRs are known before a drug is marketed’, and ‘before ADR reporting, drug’s association needs no confirmation’ showed 14%, 41% and 5% correctness, respectively. However, 98% of the participants emphasized the need for ADR reporting, in both serious and non-serious cases, 85% knew that anybody can report ADR and approximately the same percentage of students could identify the organization receiving reports. Less than half (47%) were familiar with the authorized ADR reporting form and 40% reportedly claimed that they knew when and how to report. The need for more relevant education about this was supported by most of the students (91.8%). Participants mostly agreed about the need for reporting and gaining more overall awareness about the ADR reporting procedure. The findings suggest that increased knowledge, training, assertiveness and practice among all stakeholders are necessary for a spontaneous ADR reporting system in the country. Dhaka Univ. J. Pharm. Sci. 22(1): 21-28, 2023 (June)

The financial toxicity of chemotherapy in Belize.

e24007 Background: In low- and middle-income countries (LMICs) such as Belize, large fractions of healthcare costs are borne directly by patients. In these settings of minimal insurance coverage and a fragmented healthcare system, evaluating the extent of financial toxicity is paramount to understanding direct barriers to care delivery. We surveyed Belizean cancer patients in 2022 who were receiving chemotherapy at the only public oncology clinic in the country, established at the Karl Heusner Memorial Hospital (KHMH) in 2018, to quantify financial toxicity. Methods: A convenience sample of patients at the KHMH oncology clinic were surveyed between February and March 2022. Patients who consented during their infusion appointment were given a tablet with a 21-question survey (English or Spanish). This survey was developed from the FACT-G and COST tools adapted specifically for LMIC settings. Answers were on a 5-point Likert scale. We provide descriptive statistics of the population and survey responses. Results: Median age of survey participants (n = 32) was 51 (IQR 43 – 62), 84% were female and 53% unemployed. 71% were uninsured. Those insured were covered by the Belizean government’s National Health Insurance which does not include oncologic care. Most patients (72%) had traveled from another district for treatment at the clinic in Belize City. Cancer types represented were breast (42%), gastrointestinal (27%), gynecologic (27%), and lymphoma (4%); 75% of patients had either stage 3 or 4 disease. 56% agreed with the statement “I am having financial problems with cancer treatment,” 31% disagreed, and 13% neither agreed nor disagreed. Patients were allowed to indicate multiple contributors to financial hardship during treatment, with costs of chemotherapy cited most often (50% of patients), followed by transportation costs (38%), hospital fees (22%), food (12%), and housing (9%). 25% of respondents agreed with the prompt “It is difficult to come to all of my appointments,” with transportation being the most cited reason (88%). Conclusions: In our survey, more than half of Belizean cancer patients on chemotherapy reported financial hardship with their treatment. Drivers of toxicity were the cost of chemotherapy and travel. Our sample, predominately female, unemployed, uninsured, and from less wealthy districts, had sociodemographic factors that suggest a high risk for financial toxicity during cancer treatment. Though limited by the small sample size, this study prompts further investigation and more precise quantification of financial toxicity in Belize. These preliminary data have begun conversations within the Ministry of Health for inclusion of chemotherapy under the covered medications list by public health institutions.

Abstract 87: Time From Symptom Development to Care Milestones at the Only Public Oncology Clinic in Belize

Abstract Purpose: Belize is a middle-income Caribbean country with a fragmented healthcare system. In 2018, the first and only public medical oncology clinic was opened through a capacity building partnership with the Ministry of Health. Little is known about the country’s referral infrastructure for cancer. Here we report on the stage at presentation to the clinic, and the time from symptom development to various care milestones (biopsy, oncology clinic visit, chemo, upfront surgery), referred to as time-to-care, to establish a base timeline. Methods: We performed a retrospective review of available data at the Karl Heusner Memorial Hospital (KHMH) oncology clinic from 2018 - 2022, gathering cancer type, stage, and the dates of care milestones (biopsy, initial clinic visit, chemo, upfront surgery). Date of symptom development was consistently documented by the treating physician (RY). Results: The most common presenting malignancies (n=465) were breast (28%), cervical (12%), hematologic (8%), and colorectal (7%). For staged patients (n=352), the most common presentations were stage III (28%) and IV (40%). For time-to-care, patients with available data (n=208) were seen for an initial oncology clinic visit a median of 180 days (IQR 87-382) after self-reported symptom development. For time-to-chemo at any site (ex. Belize, Mexico, Guatemala), the median was 189 days (IQR 108-404). For upfront surgery at any site the median was 188 days (IQR 60-352). In contrast to these long lead times, once established at the KHMH clinic, the time from the initial oncology clinic visit to a biopsy (if not done previously) was 22 days (IQR 11-47, n=42), 18 days (IQR 5-60, n=115) to begin chemo, and 40 days (IQR 24-72, n=22) to surgery. Conclusion: Patients were seen at the KHMH oncology clinic with predominantly late stage disease around six months after symptoms started. This is a higher fraction of stage III/IV disease than previously reported in Central America. Understanding drivers of these delays will allow for the creation of targeted public health interventions. As a marker that building infrastructure in Belize is possible, the partnership between the Belizean government and hospital administration has netted time-to-care intervals comparable to high-income nations. Citation Format: Wayne Wong, James Dickerson, Martha Habet, Margaret Bernard, Lorna Kelly, John Lattin, Philip Garrity, Franklin Huang, Ramon Yacab. Time From Symptom Development to Care Milestones at the Only Public Oncology Clinic in Belize [abstract]. In: Proceedings of the 11th Annual Symposium on Global Cancer Research; Closing the Research-to-Implementation Gap; 2023 Apr 4-6. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(6_Suppl):Abstract nr 87.

Promoting Well-being Among Informal Caregivers of People With HIV/AIDS in Rural Malawi: Community-Based Participatory Research Approach.

People living with HIV/AIDS and their informal caregivers (usually family members) in Malawi do not have adequate access to patient-centered care, particularly in remote rural areas of the country because of the high burden of HIV/AIDS, coupled with a fragmented and patchy health care system. Chronic conditions require self-care strategies, which are now promoted in both developed and developing contexts but are still only emerging in sub-Saharan African countries. This study aims to explore the effects of the implementation of a short-term intervention aimed at supporting informal caregivers of people living with HIV/AIDS in Malawi in their caring role and improving their well-being. The intervention includes the dissemination of 6 health advisory messages on topics related to the management of HIV/AIDS over a period of 6 months, via the WhatsApp audio function to 94 caregivers attending peer support groups in the rural area of Namwera. We adopted a community-based participatory research approach, whereby the health advisory messages were designed and formulated in collaboration with informal caregivers, local medical physicians, social care workers, and community chiefs and informed by prior discussions with informal caregivers. Feedback on the quality, relevance, and applicability of the messages was gathered via individual interviews with the caregivers. The results showed that the messages were widely disseminated beyond the support groups via word of mouth and highlighted a very high level of adoption of the advice contained in the messages by caregivers, who reported immediate (short-term) and long-term self-assessed benefits for themselves, their families, and their local communities. This study offers a novel perspective on how to combine community-based participatory research with a cost-effective, health-oriented informational intervention that can be implemented to support effective HIV/AIDS self-care and facilitate informal caregivers' role.

Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study

Background: Despite the diagnosis of life-limiting foetal conditions, some mothers choose to continue their pregnancies. The experiences of these individuals are relatively unknown, making it difficult for perinatal palliative services to be targeted towards their needs. Aim: To examine maternal experiences in perinatal palliative care among those who choose to continue their pregnancies despite life-limiting foetal condition. Design: Qualitative, retrospective study involving semi-structured interviews. Braun & Clarke’s reflexive thematic analyses using a constructionist-interpretive approach were conducted. Setting/participants: A total of 15 adult women participants who decided to continue their pregnancies after learning of life-limiting foetal diagnoses were recruited from a Singaporean tertiary hospital. Interviews were conducted in-person or via video conferencing. Results: Seven themes were synthesized from the data: (1) Internal upheaval – ‘World turns upside down’; (2) Role of religion and spirituality in hope of miracles; (3) Support from family and close friends; (4) Navigating a fragmented healthcare system; (5) Value added by the perinatal palliative service; (6) Goodbye and grieving and (7) No regrets and other personal reflections. Conclusions: Continuing a pregnancy despite the diagnosis of a life-limiting foetal condition can be challenging for mothers. To better meet their needs during this difficult period, perinatal palliative care must be patient-centred, multidisciplinary and non-judgmental. Efforts must be made to streamline the healthcare delivery process.

Codesigning a social prescribing pathway to address the social determinant of health concerns of children with cerebral palsy and their families in Australia: a protocol for a mixed-methods formative research study

IntroductionSocial determinants of health (SDH) are contributors to health inequities experienced by some children with cerebral palsy and pose barriers to families engaging with complex and fragmented healthcare systems. There...

Listening to Patients With Lupus: Why Not Proactively Integrate the Internet as a Resource to Drive Improved Care?

Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease. It is characterized by a broad spectrum of manifestations, depending on the affected organs and the severity of the inflammation at the time of presentation. Despite improvements in management, treatments are required on a chronic, cyclical basis; have high potential for unpleasant side effects; and deliver variable efficacy. Patients require care from multiple specialists, which can be delivered simultaneously and sporadically. Our fragmented health care system further exacerbates the disconnect between intermittent medical care and the lived experiences of patients with SLE. The goals of this research are to (1) assess the current standard of care for patients with SLE through the review of medical literature, including clinical consensus guidelines and systematic reviews; (2) assess the lived experiences of patients with lupus through the review of peer-reviewed literature on social listening, structured interviews, and data available from the open-access digital health platform PatientsLikeMe; and (3) present the perspective that the medical community has an opportunity to acknowledge and review the use of digital health interventions (DHIs) with their patients. The results of this research indicate that patients are incorporating DHIs, such as the internet and social media platforms, as critical components of their care for even the most basic of support. Although patients with SLE are depending on this support to shape their care, it is not considered a primary source of care by clinicians. Integrating the voices of patients brings valuable dimension to understanding the lived experiences of patients with SLE and the impacts of mutually dependent patient needs as patients navigate the disease in daily life. The medical community has a meaningful opportunity to leverage and recommend existing DHIs, such as web-based community platforms and web-based patient registries, at every stage of the patient journey to help patients better manage their condition. This has the potential to proactively build patient trust and well-being, reduce the underreporting of symptoms, increase shared decision-making, inform and shape clinical guidelines and future research, and improve patient outcomes.

Impact and Sustainability of Foreign Medical Aid: A Qualitative Study with Honduran Healthcare Providers.

There is growing concern about the sustainability and long-term impact of short-term medical missions (STMMs)-an increasingly common form of foreign medical aid-given that brief engagements do little to address the underlying poverty and fragmented healthcare system that plagues many low- and middle-income countries (LMICs). In the absence of formal evaluations, unintended but serious consequences for patients and local communities may arise, including a lack of continuity of patient care, poor alignment with community needs, and cultural and language barriers. We conducted semi-structured interviews with Honduran healthcare providers (n = 88) in 2015 to explore local providers' perceptions of the impact and sustainability of foreign medical aid on patient needs, community health, and the country's healthcare system. Respondents represented a random sample of Honduran healthcare providers (physicians, dentists, nurses) who worked for either a government-run rural clinic or non-governmental organization (NGO) in Honduras. Honduran healthcare providers largely framed foreign medical teams as being assets that help to advance community health through the provision of medical personnel and supplies. Nonetheless, most respondents identified strategies to improve implementation of STMMs and reduce negative impacts. Many respondents emphasized a need for culturally- and linguistically-tailored medical care and health education interventions. Participants also recommended strengthening local partnerships to mitigate the risk of dependence, including on-going training and support of community health workers to promote sustainable change. Guidelines informed by local Honduran expertise are needed to increase accountability for more robust training of foreign physicians in the provision of context-appropriate care. These findings provide valuable local perspectives from Honduran healthcare providers to improve the development and implementation of STMMs, informing strategies that can complement and strengthen healthcare systems in LMICs.

Integrating Behavioral Health and Primary Care: Turning a Duet Into a Trio.

Family physicians are at the front lines of mental health concerns and distress, yet often feel stymied in their attempts to fully support patients' biopsychosocial needs within the barriers of a fragmented health care system. This article describes a practice transformation designed to facilitate more empowered care experiences. We reflect on our interdisciplinary work as a family physician and a behavioral health consultant working closely together in a Primary Care Behavioral Health model within a university setting. We describe our collaborative approach to a composite character from clinical practice: a college student with symptoms of psychomotor depression who screened negative for mood and anxiety concerns. Akin to a musical ensemble, wherein the inclusion of each voice turns a solo into a symphony, we describe key details of interdisciplinary collaboration which promotes holistic care for patients and fulfilling biopsychosocial practice for us as colleagues.