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BACKGROUND: The positive effects of active and passive music activities on older people with dementia are well and largely documented by the literature. Nevertheless, the use of music as a non-pharmacological intervention is not so common both in private and public older people care facilities because in-home staff have no competencies for delivering such activities. Conversely, the realization and implementation of a co-designed music-based curriculum for dementia care professionals may help the diffusion of music in the older people care facilities. This study was aimed at evaluating the learning outcomes of the SOUND training, based on an original co-designed music-based curriculum for dementia care professionals and implemented in Italy, Portugal and Romania. METHODS: The SOUND training study was developed through three phases: a) the co-design of the music-based curriculum for dementia care professionals, involving 55 people in the three participating countries; b) the teaching of the training curriculum to 63 dementia care professionals (29 in Italy, 17 in Portugal and 17 in Romania), delivered both in person and via a Moodle platform named Virtual Music Circle; c) the learning outcomes assessment, carried out by means of 13 self-evaluation tests, and a practical test, and the trainees' course evaluation by a questionnaire. RESULTS: Most of the trainees reached the highest score in the evaluation of the theoretical competencies in the three study countries. Conversely, some practical competencies in the facilitation of music activities need to be fine-tuned. The SOUND training course was evaluated very positively in the overall structure, theoretical contents, and practical workshops by the trainees. Nevertheless, they preferred the face-to-face compared to the distance learning methodology in the three countries. CONCLUSIONS: The SOUND training curriculum was effective in teaching music techniques and neurocognitive knowledge to dementia care professionals. Nevertheless, future courses should be differentiated for dementia care professionals with or without previous music knowledge and competencies. Moreover, the course is fully sustainable, because it does not require additional costs given that the curriculum is fully accessible online and it is also replicable because it trains professionals who can continue to apply the method in their working routine.
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Currículo , Demência , Humanos , Demência/terapia , Portugal , Romênia , Itália , Masculino , Feminino , Musicoterapia , Adulto , Pessoal de Saúde/educação , MúsicaRESUMO
Congenital hypogonadotropic hypogonadism (CHH) is a rare genetic disorder characterized by infertility and the absence of puberty. Defects in GnRH neuron migration or altered GnRH secretion and/or action lead to a severe gonadotropin-releasing hormone (GnRH) deficiency. Given the close developmental association of GnRH neurons with the olfactory primary axons, CHH is often associated with anosmia or hyposmia, in which case it is defined as Kallmann syndrome (KS). The genetics of CHH are heterogeneous, and >40 genes are involved either alone or in combination. Several CHH-related genes controlling GnRH ontogeny encode proteins containing fibronectin-3 (FN3) domains, which are important for brain and neural development. Therefore, we hypothesized that defects in other FN3-superfamily genes would underlie CHH. Next-generation sequencing was performed for 240 CHH unrelated probands and filtered for rare, protein-truncating variants (PTVs) in FN3-superfamily genes. Compared to gnomAD controls the CHH cohort was statistically enriched for PTVs in neuron-derived neurotrophic factor (NDNF) (p = 1.40 × 10-6). Three heterozygous PTVs (p.Lys62∗, p.Tyr128Thrfs∗55, and p.Trp469∗, all absent from the gnomAD database) and an additional heterozygous missense mutation (p.Thr201Ser) were found in four KS probands. Notably, NDNF is expressed along the GnRH neuron migratory route in both mouse embryos and human fetuses and enhances GnRH neuron migration. Further, knock down of the zebrafish ortholog of NDNF resulted in altered GnRH migration. Finally, mice lacking Ndnf showed delayed GnRH neuron migration and altered olfactory axonal projections to the olfactory bulb; both results are consistent with a role of NDNF in GnRH neuron development. Altogether, our results highlight NDNF as a gene involved in the GnRH neuron migration implicated in KS.
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Movimento Celular , Hipogonadismo/congênito , Hipogonadismo/genética , Mutação , Fatores de Crescimento Neural/genética , Neurônios/patologia , Adolescente , Animais , Estudos de Coortes , Feminino , Heterozigoto , Humanos , Hipogonadismo/patologia , Masculino , Camundongos , Camundongos Knockout , Fatores de Crescimento Neural/fisiologia , Neurônios/metabolismo , Linhagem , Peixe-ZebraRESUMO
BACKGROUND: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates' and collegues, in order to highlight differences between young caregivers and the older ones. METHODS: Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. RESULTS: Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. CONCLUSIONS: Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people's everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.
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Cuidadores , Família , Adaptação Psicológica , Adolescente , Idoso , Idoso de 80 Anos ou mais , HumanosRESUMO
Congenital hypogonadotropic hypogonadism (CHH) is a rare genetic disease characterized by absent puberty and infertility due to GnRH deficiency, and is often associated with anosmia [Kallmann syndrome (KS)]. The genetic etiology of CHH is heterogeneous, and more than 30 genes have been implicated in approximately 50% of patients with CHH. We hypothesized that genes encoding axon-guidance proteins containing fibronectin type-III (FN3) domains (similar to ANOS1, the first gene associated with KS), are mutated in CHH. We performed whole-exome sequencing in a cohort of 133 CHH probands to test this hypothesis, and identified rare sequence variants (RSVs) in genes encoding for the FN3-domain encoding protein deleted in colorectal cancer (DCC) and its ligand Netrin-1 (NTN1). In vitro studies of these RSVs revealed altered intracellular signaling associated with defects in cell morphology, and confirmed five heterozygous DCC mutations in 6 probands-5 of which presented as KS. Two KS probands carry heterozygous mutations in both DCC and NTN1 consistent with oligogenic inheritance. Further, we show that Netrin-1 promotes migration in immortalized GnRH neurons (GN11 cells). This study implicates DCC and NTN1 mutations in the pathophysiology of CHH consistent with the role of these two genes in the ontogeny of GnRH neurons in mice.
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Receptor DCC/genética , Hipogonadismo/genética , Netrina-1/genética , Adulto , Estudos de Coortes , Receptor DCC/metabolismo , Feminino , Domínio de Fibronectina Tipo III , Hormônio Liberador de Gonadotropina/deficiência , Humanos , Hipogonadismo/metabolismo , Hipogonadismo/patologia , Masculino , Mutação , Netrina-1/metabolismo , Neurônios/metabolismo , Neurônios/patologia , Linhagem , Sequenciamento do ExomaRESUMO
BACKGROUND: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17 years old. METHODS: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs. RESULTS: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care. CONCLUSIONS: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.
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Conscientização , Cuidadores/psicologia , Apoio Social , Adolescente , Cuidadores/estatística & dados numéricos , Técnica Delphi , Europa (Continente) , Feminino , Humanos , MasculinoRESUMO
[This corrects the article DOI: 10.2196/17809.].
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BACKGROUND: The rapid increase of the aging population is pushing many national governments to reshape retirement legislation in order to extend older adults' working life. Once retired, older adults can be invaluable resources for the community as family carers, as volunteers, or by returning to work. Healthy aging is one of the main conditions for being able to work longer and being active after retirement. The latter, indeed, represents a very sensitive life transition, which can entail psychological and social difficulties. Interventions for promoting older workers' health and well-being and supporting the transition to retirement are on the top of the policy agenda of most European countries. Recently, computer-based and digital health interventions have been seen as promising means to reach this purpose. OBJECTIVE: This systematic literature review aimed to explore studies on digital health coaching programs for older workers that followed a user-centered design approach and evaluated their effectiveness in providing older adults with guidance for adopting a healthy lifestyle and being active in the community. METHODS: The search identified 1931 papers, and 2 relevant articles were selected by applying specific eligibility criteria. RESULTS: To our knowledge, only few digital health coaching programs have targeted the population of older workers to date; there is an insufficient number of studies on the efficacy of such programs. The results show the difficulties of assessing the efficacy of digital coaching itself and with respect to older employees. The 2 studies suggest that digital health programs for workplaces can improve various aspects of older employees' well-being; however, they considered health mainly from a physical perspective and neglected contextual, social, psychological, and cultural factors that can influence older workers' health and general well-being. Future digital health coaching programs should adopt the healthy aging paradigm as a multidimensional lens for interpreting the impact of eHealth technology on aging and retirement. The literature around this issue remains at an embryonic state, and this gap needs to be filled by further investigations that apply a user-centered approach for designing the technology, test innovative research methodologies, and adopt new technical solutions for high-quality interaction design. CONCLUSIONS: Further digital health coaching programs aimed at supporting healthy and active living for older workers and retirees are necessary. The user-centered design approach is recommended in order to fully address the users' health needs and the technological requirements throughout development. Moreover, the healthy aging perspective allows inclusion of physical, social, and psychological factors influencing the transition from work to retirement, as well as the experiences and interactions of individuals with the technology.
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BACKGROUND: Urinary incontinence is a chronic, age-related disorder, likely to increase in the future due to global population ageing. In Italy, as in most countries, older people with incontinence are often cared for by family caregivers, whose burden might be worsened by the perception of receiving an inadequate support, due to the lack of customized services. The aim of this study was to evaluate the impact of the absorbent products distribution method on family caregivers' perception of the support received. METHODS: The study compared the distribution of pads to homes and in pharmacy via a survey reaching 101 family caregivers of older people with incontinence living in two geographical areas of the Marche Region (Central Italy) with different distribution systems. The association between "Quality of perceived support" (the outcome variable) and two types of absorbent products delivery methods (i.e. pharmacy and home distribution) was analysed by means of a general linear model. RESULTS: Findings show that family caregivers receiving pads at home (HODs) perceived a higher support than those gaining them at the pharmacy (PHADs) (respectively 68.1% vs 35%). The association between perceived support level and distribution system remained even after correction for confounding factors. 70.2% of PHADs reported "Poor well-being", versus only 53.7% of HODs. The latter are more satisfied with the type of products distribution and thus less inclined to experiment different systems for the supply of products for the urinary continence (e.g. by voucher). The results are virtually reversed among PHADs and the difference is statistically significant (p < 0.001). CONCLUSIONS: When family caregivers feel supported by a more customized service delivery system, their perception of the care-related burden is mitigated. Thus, it is important to consider the needs of both family caregivers and cared for older people, and not only of the latter for designing a more suitable distribution of absorbent products. The best solution could be leaving end-users the freedom to choose how they want to get products (e.g. voucher or personal budget). This requires a reorganization of the current pads delivery systems adopted by the Marche and by other Italian Regional Health Systems.
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Absorventes Higiênicos/provisão & distribuição , Cuidadores/psicologia , Atenção à Saúde/métodos , Percepção , Inquéritos e Questionários , Incontinência Urinária/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Fraldas para Adultos/provisão & distribuição , Feminino , Humanos , Itália/epidemiologia , Masculino , Pessoa de Meia-Idade , Assistência Farmacêutica/provisão & distribuição , Incontinência Urinária/epidemiologiaRESUMO
Anemia is a well-known complication in CKD dogs, but its frequency in AKI dogs has been poorly investigated. The aim of the present study was to retrospectively evaluate frequency, degree of severity, and regeneration rate of anemia in relation to IRIS grade, etiology, therapy, and outcome. Medical records of dogs (2017-2023) with historical, laboratory, and ultrasound findings consistent with AKI were retrospectively reviewed. According to etiology, AKI was classified as ischemic/inflammatory (IS), infectious (INF), nephrotoxic (NEP), obstructive (OBS), and unknown (UK). AKI dogs were also classified according to therapeutical management (medical vs. hemodialysis), survival to discharge (survivors vs. non-survivors). Anemia was defined as HCT < 37% and classified as mild (HCT 30-37%), moderate (HCT 20-29%), severe (13-19%), or very severe (<13%). Anemia was classified as microcytic (MCV < 61 fL), normocytic (61 and 73 fL), and macrocytic (>73 fL). Anemia was considered hypochromic (MCHC< 32 g/dL), normochromic (32 and 38 g/dL), and hyperchromic (>38 g/dL). Regeneration rate was considered absent (RET ≤ 60,000/µL), mild 61,000-150,000/µL), and moderate (>150,000/µL). A total of 120 AKI dogs were included in the study, and anemia was found in 86/120 dogs (72%). The severity of anemia was mild in 32/86 dogs (37%), moderate in 40/86 dogs (47%), severe in 11/86 dogs (13%), and very severe in 3/86 (3%). Anemia was normochromic in 71/86 dogs (83%), hyperchromic in 12/86 dogs (14%), and hypochromic in 3/86 dogs (3%). Normocytic anemia was present in 56/86 dogs (65%), microcytic anemia in 27/86 dogs (31%), and macrocytic anemia in 3/86 dogs (4%). Non-regenerative anemia was found in 76/86 dogs (88%). The frequency of anemia increased significantly (p < 0.0001) with the progression of IRIS grade, although no significant difference in the severity of anemia was found among the IRIS grades. The frequency of non-regenerative forms of anemia was significantly higher than regenerative forms (p < 0.0001) in all IRIS grades. In our population of AKI dogs, anemia was a very frequent finding, in agreement with current findings in human nephrology.
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BACKGROUND: During the COVID-19 pandemic, reduced access to care services and fear of infection prompted families to increase home care for their older relatives with long-term care needs. This had negative effects on both members of the caring dyad, impacting their quality of life (QoL) and mental well-being. This study investigated the factors that influenced the mental well-being and QoL of 239 dyads, before and after the first pandemic wave in Italy. METHODS: Data were collected through a survey on the use of health and social care services and interventions by older care recipients living in the community and their family caregivers. Factors associated with deterioration of mental well-being and QoL in older care recipients (mean age 86.1 years old) and their family caregivers after the pandemic were studied. RESULTS: The importance attached by family caregivers to the skills and training of healthcare professionals was a protective factor against the deterioration in the well-being of older care recipients. Similarly, the importance associated by family caregivers to the help received from healthcare professionals was a protective factor for QoL. Financial hardship of older care recipients was a risk factor for deterioration in caregivers' mental well-being, while support from other family members was a protective factor for QoL. CONCLUSIONS: The presence of attentive healthcare professionals, a supportive family environment, and economic support can reduce the burden on both the caregiver and the older care recipient. These aspects need to be considered in any future emergency situation and when planning care services for community-dwelling older people.
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A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018-2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling-Parent Carers. Sibling Carers and Sibling-Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support.
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Angiopoietin-like 3 (ANGPTL3) regulates lipoprotein metabolism by modulating extracellular lipases. Loss-of function mutations in ANGPTL3 gene cause familial combined hypolipidemia (FHBL2). The mode of inheritance and hepatic and vascular consequences of FHBL2 have not been fully elucidated. To get further insights on these aspects, we reevaluated the clinical and the biochemical characteristics of all reported cases of FHBL2. One hundred fifteen FHBL2 individuals carrying 13 different mutations in the ANGPTL3 gene (14 homozygotes, 8 compound heterozygotes, and 93 heterozygotes) and 402 controls were considered. Carriers of two mutant alleles had undetectable plasma levels of ANGPTL3 protein, whereas heterozygotes showed a reduction ranging from 34% to 88%, according to genotype. Compared with controls, homozygotes as well as heterozygotes showed a significant reduction of all plasma lipoproteins, while no difference in lipoprotein(a) [Lp(a)] levels was detected between groups. The prevalence of fatty liver was not different in FHBL2 subjects compared with controls. Notably, diabetes mellitus and cardiovascular disease were absent among homozygotes. FHBL2 trait is inherited in a codominant manner, and the lipid-lowering effect of two ANGPTL3 mutant alleles was more than four times larger than that of one mutant allele. No changes in Lp(a) were detected in FHBL2. Furthermore, our analysis confirmed that FHBL2 is not associated with adverse clinical sequelae. The possibility that FHBL2 confers lower risk of diabetes and cardiovascular disease warrants more detailed investigation.
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Hipobetalipoproteinemias/sangue , Hipobetalipoproteinemias/genética , Lipídeos/sangue , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Proteína 3 Semelhante a Angiopoietina , Proteínas Semelhantes a Angiopoietina , Angiopoietinas/sangue , Angiopoietinas/genética , Doenças Cardiovasculares/genética , Criança , Estudos de Coortes , Fígado Gorduroso/genética , Regulação da Expressão Gênica , Heterozigoto , Homozigoto , Humanos , Lipoproteína(a)/sangue , Pessoa de Meia-Idade , Mutação , Adulto JovemRESUMO
OBJECTIVE: This study investigated the effectiveness of liraglutide 3.0 mg daily in combination with a standardized multidisciplinary intervention on body weight and body composition changes in a real-life setting. METHODS: A prospective, observational cohort study design was used. Adult patients with BMI > 35 kg/m2 , or BMI > 28 kg/m2 with greater than or equal to one metabolic comorbidity, were included (n = 54, 65% women). Liraglutide treatment was covered by Swiss health insurance. Clinical and biological data were collected at baseline, 4 months, and 10 months. Body composition was assessed by dual-energy x-ray absorptiometry at baseline and 10 months. RESULTS: At 10 months, mean (SD) percentage weight loss (WL%) was -12.4% (5.5%) or -14.1 (6.6) kg. WL% was ≥5% in 87% of patients at 4 months and in 96% at 10 months. WL% was higher in women (-9.5% [3.1%] vs. men -7.2% [2.5%], p = 0.02) at 4 months and persisted at 10 months (-13.7% [5.2%] vs. -9.6% [5.1%], p = 0.006). WL% was associated with baseline percentage fat mass but not with age or BMI. Body composition showed a decrease in fat mass, visceral adipose tissue, and absolute lean mass. CONCLUSIONS: In a real-world setting, liraglutide 3.0 mg led to beneficial changes in WL and body composition, with a greater impact in women.
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Liraglutida , Obesidade , Masculino , Adulto , Humanos , Feminino , Liraglutida/uso terapêutico , Estudos Prospectivos , Suíça/epidemiologia , Obesidade/tratamento farmacológico , Redução de Peso , Composição CorporalRESUMO
Retirement is a critical step in older adults' lives, so it is important to motivate them to stay physically active, mentally healthy, and socially connected in the transition from work to retirement, including through digital health coaching programs. This study aims to: evaluate the impact of a digital coaching intervention to enhance three healthy ageing dimensions, i.e., physical activity, mental well-being, and socialization of a group of adults near retirement; understand the users' experience; and identify the system strengths and weaknesses. This longitudinal mixed-methods study, carried out in 2021 in Italy and the Netherlands, enrolled 62 individuals. In the first 5 weeks of the trial, participants used a digital coach with the support of human coaches, and then they continued autonomously for another 5 weeks. The use of the digital coach improved the participants' physical activity, mental well-being and self-efficacy during the first period and only the physical activity in the second. An effective coaching system should be flexible and attractive. High levels of personalization remain the golden key to aligning the health program to the physical, cognitive and social status of the intended target, thus increasing the user-system interaction, usability, and acceptability, as well as enhancing adherence to the intervention.
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Envelhecimento Saudável , Tutoria , Humanos , Idoso , Aposentadoria , Saúde Mental , Exercício FísicoRESUMO
Prior studies emphasize the value of friends' support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018-2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.
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INTRODUCTION: A prescribing cascade occurs when a drug is prescribed to manage the often unrecognised side effect of another drug; these cascades are of particular concern for older adults who are at heightened risk for drug-related harm. It is unknown whether, and to what extent, gender bias influences physician decision-making in the context of prescribing cascades. The aim of this transnational study is to explore the potential impact of physician implicit gender biases on prescribing decisions that may lead to the initiation of prescribing cascades in older men and women in two countries, namely: Canada and Italy. METHODS AND ANALYSIS: Male and female primary care physicians at each site will be randomised 1:1 to a case vignette that features either a male or female older patient who presents with concerns consistent with the side effect of a medication they are taking. During individual interviews, while masked to the true purpose of the study, participants will read the vignette and use the think-aloud method to describe their ongoing thought processes as they consider the patient's concerns and determine a course of action. Interviews will be recorded, transcribed verbatim and thematic analysis will be conducted to highlight differences in decisions in the interviews/transcripts, using a common analytical framework across the sites. ETHICS AND DISSEMINATION: This study has received ethics approval at each study site. Verbal informed consent will be received from participants prior to data collection and all data will be deidentified and stored on password-protected servers. Results of this study will be disseminated through peer-reviewed journal articles and presented at relevant national and international conferences.
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Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Médicos , Idoso , Feminino , Humanos , Masculino , Canadá , Cognição , Sexismo , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15-17 in Switzerland, based on data collected within the Horizon 2020 project 'Psychosocial support for promoting mental health and well-being among AYCs in Europe' (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.
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Saúde Mental , Qualidade de Vida , Humanos , Masculino , Feminino , Adolescente , Suíça , União Europeia , Cuidadores/psicologiaRESUMO
Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15-17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020-2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.