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Participatory design (PD) is a methodology that emphasizes user participation in the design of new technologies to leverage change within organizations and services. PD originated in the computer science field in the 1970s and 1980s when new programs and technologies were developed to empower workers, by involving them in decisions that affected them. PD in health research has been proven to change clinical practice. Genuine user involvement that includes all stakeholders, and robust collaborations across sciences, sectors, and disciplines are basic elements of successful research to change clinical practice and to implement novel technical and organizational approaches. This paper summarizes seven case studies involving the use of PD in telehealth research. All cases presented promoted organizational changes supported by health information and communications technology, and have been implemented at either international, national, regional, or local levels. We describe how PD can be applied in health sciences and used to facilitate organizational changes, new perspectives, and new communications methods. The relevance and suitability of PD as a research design in health science is explained, and recommendations for conducting PD studies in telehealth research are presented. In PD, mutual learning and co-creation is facilitated. Consequently, learning from users, rather than studying them, corroborates our understanding and the emergence of new knowledge.
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INTRODUCTION: Pseudomonas aeruginosa AUST-03 (ST242) has been reported to cause epidemics in people with CF (pwCF) from Australia and has been associated with multidrug resistance and increased morbidity and mortality. Here, we report an epidemic P. aeruginosa (AUST-03) strain in South African pwCF detected at a public hospital and characterize the genomic antibiotic resistance determinants. METHODS: The P. aeruginosa AUST-03 (ST242) study isolates were analysed with whole genome sequencing using the Illumina NextSeq2000 platform. Raw sequencing reads were processed using the Jekesa pipeline and multilocus sequence typing and genomic antibiotic resistance characterization was performed using public databases. Genetic relatedness between the study isolates and global P. aeruginosa ST242 from public databases was determined using a maximum-likelihood phylogenetic tree. Antibiotic susceptibility testing was performed using the disk diffusion and broth microdilution techniques. RESULTS: A total of 11 P. aeruginosa AUST-03 isolates were isolated from two children with CF. The majority (8/11) of these isolates were multidrug-resistant (MDR) or extensively drug resistant; and the multidrug efflux pumps MexAB-OprM, MexCD-OprJ, MexEF-OprN, and MexXY-OprM were the most clinically relevant antibiotic resistance determinants and were detected in all of the isolates. The study isolates were the most closely related to a 2020 P. aeruginosa AUST-03 (ST242) CF isolate from Russia. CONCLUSION: Epidemic MDR P. aeruginosa strains are present at South African public CF clinics and need to be considered when implementing segregation and infection control strategies to prevent possible spread and outbreaks.
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The EFSA Scientific Committee has updated its 2010 Guidance on risk-benefit assessment (RBA) of foods. The update addresses methodological developments and regulatory needs. While it retains the stepwise RBA approach, it provides additional methods for complex assessments, such as multiple chemical hazards and all relevant health effects impacting different population subgroups. The updated guidance includes approaches for systematic identification, prioritisation and selection of hazardous and beneficial food components. It also offers updates relevant to characterising adverse and beneficial effects, such as measures of effect size and dose-response modelling. The guidance expands options for characterising risks and benefits, incorporating variability, uncertainty, severity categorisation and ranking of different (beneficial or adverse) effects. The impact of different types of health effects is assessed qualitatively or quantitatively, depending on the problem formulation, scope of the RBA question and data availability. The integration of risks and benefits often involves value-based judgements and should ideally be performed with the risk-benefit manager. Metrics such as Disability-Adjusted Life Years (DALYs) and Quality-Adjusted Life Years (QALYs) can be used. Additional approaches are presented, such as probability of all relevant effects and/or effects of given severities and their integration using severity weight functions. The update includes practical guidance on reporting results, interpreting outcomes and communicating the outcome of an RBA, considering consumer perspectives and responses to advice.
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BACKGROUND: Transition is characterized by developing greater self-identity and growing independence, but adolescents dealing with chronic illnesses encounter health-related and situational changes during transition. Despite the many suggestions made in recent years, the shift from pediatric to adult care continues to pose difficulties for adolescents and young adults with epilepsy (AWE). The holistic perspective of AWE's experiences and needs during transition is not as well understood. AIM: To synthesize the qualitative evidence related to AWE's experiences and needs transitioning from pediatric to adult hospital care. METHODS: This systematic review adhered to the rigorous Joanna Briggs methodology for qualitative evidence synthesis. A comprehensive search was conducted across multiple databases, including PubMed, CINAHL, Scopus, Embase, PsycINFO, and ProQuest Dissertations & Theses Global, from their inception to April 2024. The findings were critically appraised and aggregated using meta-synthesis. RESULTS: The search yielded a total of 3,985 studies, and twenty-one were included in the review. Two of the included studies were undertaken in a program where a transition clinic was established. The meta-synthesis reveals that the transition experience of AWE is more than a change from one clinic to another and is interwoven into a pattern of developmental, health-illness, situational, and organizational transition issues. Five synthesized findings were developed: 1) Feeling different from others and striving to address the impact of epilepsy in everyday life; 2) the transition from pediatric to adult care - a problematic intersection point; 3) the family's role - support or parental overprotectiveness 4) seeking knowledge and being familiar with epilepsy supported by healthcare professionals and technologies, and 5) development of independence and responsibility through involvement and support from healthcare professionals and parents. CONCLUSION: During the transition from pediatric to adult hospital care, AWEs encounter a loss of familiarity, increased responsibility, and feelings of not belonging. Therefore, it is essential to create an environment where they can thrive beyond the limitations of their illness. Understanding, acceptance, and inclusivity should characterize this environment to support AWEs in facilitating the development of responsibility, independence, and confidence as they navigate transitions.
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Epilepsia , Transição para Assistência do Adulto , Humanos , Epilepsia/psicologia , Epilepsia/terapia , Adolescente , Adulto Jovem , Pesquisa Qualitativa , AdultoRESUMO
Background and Aim: People with inflammatory bowel disease (IBD) have an increased risk of cardiovascular disease, including in younger adulthood. This may arise in part from chronic, systemic low-grade inflammation. The process of atherosclerosis may begin in childhood. We sought to determine whether pediatric IBD is associated with adverse changes in arterial structure and function as a marker of early increased cardiovascular risk. Methods: We performed a case-control study comparing children with IBD for a median disease duration of 2.49 (interquartile range 1.23, 4.38) years with healthy children. In a single visit, we collected baseline clinical and anthropometric data, and measured blood pressure, pulse wave velocity, carotid artery distensibility, and aortic and carotid intima-media thickness. High-sensitivity C-reactive protein and fasting lipids were measured. Results: We enrolled 81 children with IBD (40 with Crohn's disease, 40 with ulcerative colitis, and 1 with unspecified IBD) and 82 control participants. After adjusting for age, sex, body mass index z-score, blood pressure, and low-density lipoprotein cholesterol, there was no difference in measures of arterial structure and function in children with IBD compared with controls, nor between those with Crohn's disease or ulcerative colitis. Conclusion: We did not show any differences in arterial structure and function in children with a history of IBD for less than 5 years compared with healthy controls. IBD diagnosed in childhood may provide a window of opportunity to actively reduce standard cardiovascular risk factors and improve future cardiovascular outcomes.
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Escherichia coli is an indicator micro-organism in One Health antibiotic resistance surveillance programs. The purpose of the study was to describe and compare E. coli isolates obtained from pigs and human contacts from a commercial farm in South Africa using conventional methods and whole-genome sequencing (WGS). Porcine E. coli isolates were proportionally more resistant phenotypically and harbored a richer diversity of antibiotic resistance genes as compared to human E. coli isolates. Different pathovars, namely ExPEC (12.43%, 21/169), ETEC (4.14%, 7/169), EPEC (2.96%, 5/169), EAEC (2.96%, 5/169) and STEC (1.18%, 2/169), were detected at low frequencies. Sequence type complex (STc) 10 was the most prevalent (85.51%, 59/169) among human and porcine isolates. Six STcs (STc10, STc86, STc168, STc206, STc278 and STc469) were shared at the human-livestock interface according to multilocus sequence typing (MLST). Core-genome MLST and hierarchical clustering (HC) showed that human and porcine isolates were overall genetically diverse, but some clustering at HC2-HC200 was observed. In conclusion, even though the isolates shared a spatiotemporal relationship, there were still differences in the virulence potential, antibiotic resistance profiles and cgMLST and HC according to the source of isolation.
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AIM: To identify and quantify general practitioner (GP) preferences related to service attributes of clinical consultations, including telehealth consultations, in Australia. BACKGROUND: GPs have been increasingly using telehealth to deliver patient care since the onset of the 2019 coronavirus disease (COVID-19) pandemic. GP preferences for telehealth service models will play an important role in the uptake and sustainability of telehealth services post-pandemic. METHODS: An online survey was used to ask GPs general telehealth questions and have them complete a discrete choice experiment (DCE). The DCE elicited GP preferences for various service attributes of telehealth (telephone and videoconference) consultations. The DCE investigated five service attributes, including consultation mode, consultation purpose, consultation length, quality of care and rapport, and patient co-payment. Participants were presented with eight choice sets, each containing three options to choose from. Descriptive statistics was used, and mixed logit models were used to estimate and analyse the DCE data. FINDINGS: A total of 60 GPs fully completed the survey. Previous telehealth experiences impacted direct preferences towards telehealth consultations across clinical presentations, although in-person modes were generally favoured (in approximately 70% of all scenarios). The DCE results lacked statistical significance which demonstrated undiscernible differences between GP preferences for some service attributes. However, it was found that GPs prefer to provide a consultation with good quality care and rapport (P < 002). GPs would also prefer to provide care to their patients rather than decline a consultation due to consultation mode, length or purpose (P < 0.0001). Based on the findings, GPs value the ability to provide high-quality care and develop rapport during a clinical consultation. This highlights the importance of recognising value-based care for future policy reforms, to ensure continued adoption and sustainability of GP telehealth services in Australia.
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COVID-19 , Clínicos Gerais , Telemedicina , Humanos , Austrália , Feminino , Masculino , Projetos Piloto , Clínicos Gerais/estatística & dados numéricos , Telemedicina/estatística & dados numéricos , Telemedicina/métodos , Pessoa de Meia-Idade , Adulto , Inquéritos e Questionários , SARS-CoV-2 , Comportamento de Escolha , Atitude do Pessoal de Saúde , Pandemias , Encaminhamento e Consulta/estatística & dados numéricosRESUMO
Background: A penicillin or cephalosporin antibiotic (PCA) allergy label (PCAAL) has negative implications for both the patient and health care alike. Objective: A retrospective study was undertaken to evaluate the influence of a PCAAL on length of stay (LOS) and hospital readmissions. Methods: Over 4 weeks, inpatients with a PCAAL who were referred to the allergy service or opportunistically reviewed were grouped in the categories delabeled (group 1a) or advice not followed (ie, label carriage) (group 1b). Comparator groups without a PCAAL were identified, those either on a PCA (the PCA group [group 2]) or on a non-PCA (the non-PCA group [group 3]). Results: The study population comprised 77 patients as follows: group 1a (n = 19), group 1b (n = 6), group 2 (n = 36), and group 3 (n = 16). Those in group 1a were significantly older (median age 78 years) than those in group 1b (median age 53 years [P = .013]) or group 3 (median age 59 years [P = .013]).There was a trend toward lower LOS in group 1a (10 days) than in group 1b (11.5 days [P = not significant]). Group 2 had a significantly lower LOS (6 days) than either both group 1a (10 days [P = .043]) or group 3 (15 days [P = .002]). Group 3 had the highest rate of patients readmitted within 30 days (n = 5 [71.4%]). Conclusion: A PCAAL carries influence on both LOS and readmissions, thus identifying the prompt need for allergy review to provide specific recommendations: delabeling and transition to an appropriate antibiotic. The significantly older group of those with a PCAAL who received a PCA after delabeling (ie, a 20-year age difference) may also be a signal that more elderly and comorbid patients benefit from this intervention the most.
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Introduction: The literature indicates that pandemics significantly impact the mental health of frontline health workers. While the effects of COVID-19 on the mental health of frontline nurses have been studied, their lived experiences remain insufficiently explored. Objective: This study aims to investigate the lived experience of nurses who were deployed to support Wuhan during the COVID-19 pandemic. Methods: This study adopted a qualitative study design. A purposive sample of fifteen nurses were recruited from a group of nurses who supported Wuhan during COVID-19 pandemic. The data was collected during May and June 2020. Data collection occurred in May and June 2020, employing semistructured interviews conducted via telephone. Interpretative phenomenological analysis (IPA) was utilized to analyze the collected data by two independent researchers. This report follows the COREQ checklist. Results: Frontline nurses supporting Wuhan likened their experience to being on a battlefield. Four superordinate themes emerged: (1) mobilization for combating COVID-19; (2) rapid adaption to a dynamic high-stress environment; (3) navigating psychological distress; and (4) the journey home. Conclusion: This study offers comprehensive insights into the lived experience of nurses deployed from other provinces to assist COVID patients in Wuhan. The findings indicate that despite facing a variety of challenges, these frontline nurses were capable of rapid adaptation and successfully fulfilled their roles. Recommendations for future preparedness in public health emergencies are provided. Additionally, follow-up research is warranted to explore the long-term effects of frontline experience on the mental health of the nurses and their family members.
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In 2022, a global outbreak of mpox (formerly 'monkeypox') emerged in non-endemic countries, including Australia, predominantly affecting gay, bisexual and other men who have sex with men. Public health advice on transmission and isolation emerged rapidly from different sources, sometimes conflicting and producing uncertainty. Using the concept of 'counterpublic health', which acknowledges the incorporation of official science and experiences of affected communities into embodied practice, this paper investigates how people affected by mpox in Australia managed risk of transmission and navigated self-isolation. In-depth interviews were conducted with 16 people: 13 people diagnosed with mpox and three close contacts. All participants were cisgender gay and bisexual men living in Australia. Participants thought critically about public health advice, often finding it restrictive and unresponsive to the needs of people with mpox. Participants' decisions about reducing mpox risk and isolating often drew on experiences with other infections (i.e. HIV; COVID-19) and were made collaboratively with the people closest to them (e.g. partners, friends, family) to sustain relationships. Future public health responses to infectious disease outbreaks would benefit from identifying more opportunities to formalise and embed mechanisms to obtain feedback from affected communities so as to inform responses.
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What are the country-specific differences in the education of chemistry students across the EU? How do students' preferred careers change with the level of their qualifications? Do students have sufficient information to make good career choices? Which media are now considered most effective for job searches? What do students currently consider to be a successful career? Three Employment Surveys for European Chemists (ESEC1-ESEC3) were conducted between 2013 and 2020. The web-based questionnaires were open to chemists from all countries. A total of 9747 responses were received. The reports for ESEC1 and ESEC2 are freely available.[1,2] Subsequent questionnaires have been continuously adapted to reflect the latest discussions in our societies. In particular, ESEC3 focused on students' careers. The results are reported here. Where results from earlier surveys are included, this is explicitly stated. Graduates of the last 15â years are particularly important for two reasons. They represent the largest group of ESEC participants, with 59 % of the responses, and they represent the labour market with the greatest future prospects. Their situation is of particular importance for real decisions about the chemistry labour market. For this reason, this report focuses exclusively on graduates of the last 15â years.
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Understanding diversity is the foundation for progress on inclusion. Diversity covers a wide range of characteristics, not just gender. Does the training meet the current needs of the workplace? What role does gender discrimination play in the chemical workforce? To what extent are partners treated equally when caring for a family member? Three Employment Surveys for European Chemists (ESEC1 - ESEC3) were conducted between 2013 and 2020. The online questionnaires were open to chemists from all countries. 9747 responses were collected for all three surveys together. The reports for ESEC1 and ESEC2 are freely available.[1,2] The questionnaires from ESEC1 to ESEC3 were continuously adapted to reflect the latest discussions in our societies, for example diversity, which was specifically addressed in ESEC3. The results are reported here. The Royal Society of Chemistry asked similar questions.[3] Graduates from the last 15â years are particularly important for two reasons. They are the largest group of ESEC participants, with 59 % of the responses, and they represent the labour market with the greatest future prospects. Their situation is of particular importance for real decisions about the chemistry labour market. For this reason, the current report focuses exclusively on graduates of the last 15â years.
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BACKGROUND: The transition from pediatric to adult care is challenging for adolescent patients despite numerous recommendations in recent decades. However, the perspective of the patients is sparsely investigated. AIM: To explore the experiences and needs of adolescents with epilepsy (AWE) during the transition from pediatric to adult hospital care. METHODS: We conducted 15 semi-structured interviews with AWEs aged 13-20 years and 10 h of field observations of consultations. Interviews were audio-recorded, transcribed, anonymized, and entered into NVivo (version 12, QSR International) with the transcribed field notes. Data were analyzed using systematic text condensation. RESULTS: Three themes were identified: (1) Navigating epilepsy in everyday life; (2) The difficult balance between concealment and openness about epilepsy; and (3) Being seen as an individual and not an illness. AWEs' needs in transition are closely associated with their experiences and perceptions of illness, treatment, consultations, and seizures. Notably, AWEs reveal a significant concern about being overlooked beyond their medical condition in appointments. CONCLUSIONS: This study highlights the vulnerability and challenges of AWEs transitioning to adult care. Overall, AWEs seek understanding, acceptance, and autonomy in managing their epilepsy and transitioning to adult care. Their experiences underscore the importance of holistic support and communication in healthcare settings. A concerted effort from healthcare professionals (HCP) is necessary to foster the recognition of AWEs as individuals with distinct personalities, needs, and capabilities.
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Epilepsia , Pesquisa Qualitativa , Transição para Assistência do Adulto , Humanos , Epilepsia/terapia , Epilepsia/psicologia , Adolescente , Masculino , Feminino , Adulto Jovem , AdultoRESUMO
Linezolid is a drug with proven human antitubercular activity whose use is limited to highly drug-resistant patients because of its toxicity. This toxicity is related to its mechanism of actionâlinezolid inhibits protein synthesis in both bacteria and eukaryotic mitochondria. A highly selective and potent series of oxazolidinones, bearing a 5-aminomethyl moiety (in place of the typical 5-acetamidomethyl moiety of linezolid), was identified. Linezolid-resistant mutants were cross-resistant to these molecules but not vice versa. Resistance to the 5-aminomethyl molecules mapped to an N-acetyl transferase (Rv0133) and these mutants remained fully linezolid susceptible. Purified Rv0133 was shown to catalyze the transformation of the 5-aminomethyl oxazolidinones to their corresponding N-acetylated metabolites, and this transformation was also observed in live cells of Mycobacterium tuberculosis. Mammalian mitochondria, which lack an appropriate N-acetyltransferase to activate these prodrugs, were not susceptible to inhibition with the 5-aminomethyl analogues. Several compounds that were more potent than linezolid were taken into C3HeB/FeJ mice and were shown to be highly efficacious, and one of these (9) was additionally taken into marmosets and found to be highly active. Penetration of these 5-aminomethyl oxazolidinone prodrugs into caseum was excellent. Unfortunately, these compounds were rapidly converted into the corresponding 5-alcohols by mammalian metabolism which retained antimycobacterial activity but resulted in substantial mitotoxicity.
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Antituberculosos , Mycobacterium tuberculosis , Oxazolidinonas , Pró-Fármacos , Pró-Fármacos/farmacologia , Pró-Fármacos/química , Antituberculosos/farmacologia , Antituberculosos/química , Mycobacterium tuberculosis/efeitos dos fármacos , Oxazolidinonas/farmacologia , Oxazolidinonas/química , Animais , Testes de Sensibilidade Microbiana , Camundongos , Humanos , Linezolida/farmacologia , Linezolida/química , Farmacorresistência Bacteriana , Mitocôndrias/efeitos dos fármacos , Mitocôndrias/metabolismoRESUMO
Salmonella enterica serovar Infantis presents an ever-increasing threat to public health because of its spread throughout many countries and association with high levels of antimicrobial resistance (AMR). We analyzed whole-genome sequences of 5,284 Salmonella Infantis strains from 74 countries, isolated during 1989-2020 from a wide variety of human, animal, and food sources, to compare genetic phylogeny, AMR determinants, and plasmid presence. The global Salmonella Infantis population structure diverged into 3 clusters: a North American cluster, a European cluster, and a global cluster. The levels of AMR varied by Salmonella Infantis cluster and by isolation source; 73% of poultry isolates were multidrug resistant, compared with 35% of human isolates. This finding correlated with the presence of the pESI megaplasmid; 71% of poultry isolates contained pESI, compared with 32% of human isolates. This study provides key information for public health teams engaged in reducing the spread of this pathogen.
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Saúde Única , Salmonella enterica , Animais , Humanos , Sorogrupo , Antibacterianos/farmacologia , Salmonella/genética , Aves Domésticas , Farmacorresistência Bacteriana Múltipla/genéticaRESUMO
Background: In South Africa, the annual incidence of enteric fever averaged 0.1 per 100 000 persons between 2003 and 2018. During 2021 an increase in the number of enteric fever cases was observed. An outbreak investigation was conducted to determine the magnitude and source of the outbreak. Methods: We performed a cross-sectional descriptive study. Data were collected through telephonic or face-to-face interviews with cases or proxies via a standardized case investigation form. Whole genome sequencing was performed on all Salmonella Typhi isolates. Drinking water samples were collected, tested, and analyzed. Descriptive analysis was performed with Microsoft Excel. Results: Between January 2020 and September 2022, a cluster of 53 genetically highly related Salmonella Typhi isolates was identified from 5 provinces in South Africa. Isolates associated with the cluster showed ≤5 allelic differences, as determined following core genome multilocus sequence typing analysis. Most cases (60%, 32/53) were in the North West province. Males represented 68% (36/53). Of these, 72% (26/36) were aged 15 to 49 years, with a median age of 31 years. Where occupation was known within this age group, 78% (14/18) were illegal gold miners. Illegal miners reported illness onset while working underground. Five municipal tap water samples were tested and showed no evidence of fecal contamination. Conclusions: This outbreak predominantly affected illegal gold miners, likely due to the consumption of contaminated groundwater while working in a gold mine shaft. In addition, this investigation highlights the value of whole genome sequencing to detect clusters and support epidemiologic investigation of enteric fever outbreaks.
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In May 2022, a global outbreak of mpox (formerly monkeypox virus) affected thousands of mainly gay and bisexual men. Mpox is usually a time-limited illness that can involve fever, pain, and skin lesions, but may require hospitalisation. There is scant research into the firsthand experiences of people affected by mpox, including experiences of symptoms, healthcare, and recovery. This study considers the different illness narratives of people who experienced mpox in Australia in 2022. In-depth interviews and 6-month follow-up interviews were conducted with 16 people, including 13 people diagnosed with mpox and three close contacts. All participants were cisgender gay or bisexual men living in Australia. Participants' accounts described minor to severe periods of sickness, negative and stigmatising experiences engaging with healthcare, and some participants experienced long-term effects on their sexual well-being and complications from mpox. The emergency outbreak context meant that mpox was highly distressing, making it difficult to manage and producing varying forms of disruption to everyday life. Mpox was narrated as disruptive in different ways: as a minor interruption to holiday plans, a prolonged period of poor health, or a biographically disruptive event prompting a re-evaluation of sexual values and health. This analysis demonstrates that an unfamiliar emergent disease outbreak related to sexual practices and sociality can reconfigure personal life and sexual well-being, suggesting a need to focus on providing quality patient care in outbreaks of mpox and other infectious diseases.
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PURPOSE: Parents of children/adolescents with cancer are placed in a state of severe suffering due to serious concerns, fears, and radical daily life changes. Human support is an important source of support for successful coping. This study explored fundamental aspects of parents' daily, social, and personal life during their child's treatment to deepen our understanding of 'who' plays a significant role in supporting parents, and how, and to what extent this support is provided. METHODS: This qualitative study was undertaken in a compassion paradigm, designed and guided by Heidegger's and Gadamer's philosophy and compassionate methods. Data were generated through ethnographic observations (144 h), focus group interviews (n = 2), and individual/couple interviews (n = 16) at two Danish hospitals. Inductive content analysis was used to analyse data. RESULTS: Overall, support from peers, health professionals, and social networks constituted significant sources of support. Especially peers and health professionals had a continuous support role, which was fundamental for establishing interpersonal closeness and relieving suffering. Sharing responsibilities between parents and among social networks seemed to ease the emotional and practical burden. However, to ensure effectiveness, social networks must be available, outreach, and responsive to needs. Moreover, parents disclosed little self-awareness and resources and options for self-care due to a combination of lack of awareness, time, and space in the hospitals. CONCLUSION: Safeguarding interpersonal and interparental understanding and closeness in parental care is essential. One way is building resilience and a broader human-to-human-based safety net around the family, including social networks and professional psychosocial support, advantageously using compassion.