Quality of life and level of burden for caregivers of Indian children with post-operative congenital anorectal malformations.

Parenting starts much before the baby is born. It always comes with mixed feelings during parenting. Therefore, it is of interest to report the quality of life and caregiver burden for Indian children with post-operative congenital anorectal malformations. We recruited total 56 caregivers for the present study. Data shows that the highest caregiver burden in economical and the lowest in psychological. Quality of life (QOL) was highest in physical domain and there was moderate negative correlation among caregiver burden, psychological health, and social relationship.

Implementation Costs of Technology-Enhanced Transitional Palliative Care for Rural Caregivers.

OBJECTIVES: Compared to urban family caregivers (FCG), rural FCG experience greater burdens accessing coordinated care for their loved ones during and after hospitalization. The impact of technology-enhanced transitional palliative care (TPC) on caregiver outcomes is currently being evaluated in a randomized control trial. This study evaluates resource use and health system costs of this FCG-focused TPC intervention and potential Medicare reimbursement mechanisms. METHODS: Rural caregivers of hospitalized patients were randomized into an 8-week intervention consisting of video visits conducted by a registered nurse certified in palliative care, supplemented with phone calls and texts (n = 215), or attentional control. Labor costs were estimated for a registered nurse and compared to scenario analyses using a nurse practitioner or social worker wages. Medicare reimbursement scenarios included Transitional Care Management (TCM) and Chronic Care Management (CCM) CPT codes. RESULTS: In the base case, TPC cost was $395 per FCG facilitated by a registered nurse, compared to $337 and $585 if facilitated by a social worker or nurse practitioner, respectively. Mean Medicare reimbursement in the TCM-only scenario was $322 and $260 for high or moderate complexity patients, respectively. Reimbursement in the CCM only scenario was $348 and $274 for complex and non-complex patients, respectively. Reimbursement in the TCM+CCM scenario was $496 and $397, for high/complex and moderate/non-complex patients, respectively. CONCLUSION: TPC is a feasible, low cost and sustainable strategy to enhance FCG support in rural areas. Potential reimbursement mechanisms are available to offset the costs to the health system for providing transitional palliative care to caregivers of patients recently hospitalized.

Nurturing the Positive Mental Health of Autistic Children, Adolescents and Adults alongside That of Their Family Care-Givers: A Review of Reviews.

The rising prevalence of autism internationally has been accompanied by an increased appreciation of the poorer mental health experienced by people with this condition and also of their family care-givers. In particular, higher incidences of anxiety and depression are reported in high-income nations and these conditions are likely to be under-recognised and under-reported in lower-resourced regions or countries. Mainstream mental health services seem to be ill-equipped to respond adequately to the needs of autistic persons and their care-givers. This literature review of 29 recently published reviews covering nearly 1000 journal articles summarises the insights and strategies that have been shown to promote the mental health and emotional wellbeing of autistic persons. In particular, a focus on family-centred, community-based supports is recommended that aim to enhance social communication, extend social connections and promote an individual's self-esteem, self-determination and social motivation. These low-cost interventions are especially pertinent in low-resourced settings, but they can be used internationally to prevent mental illness and assist in the treatment of anxiety and depression in autistic persons and their family carers. The priority is to focus on primary-care responses with cross-sectoral working rather than investing in high-cost psychiatric provision.

Headache Characteristics and Risk Factors Among Healthcare Providers in Al-Ahsa, Saudi Arabia.

Introduction Headache is a considerable factor in decreased productivity and work efficiency. This study aims to measure the characteristics of headaches and the risk factors among healthcare providers in Al-Ahsa, Saudi Arabia. Methods This cross-sectional study included 353 healthcare providers from Al-Alhsa, Saudi Arabia. An online questionnaire was conducted to assess the demographic and occupational characteristics, headaches, numerous factors such as smoking, caffeine intake, physical activity, and medical conditions to determine their associations with headaches, as well as the impact of headaches on productivity. Results Among participants who reported headaches, 15.6% and 4.5% had been previously diagnosed with tension headaches and migraines, respectively. The mean duration of headaches was 7.09±18.16 hours; 38.5% of headaches were throbbing in nature, while 61.5% were pressing. The headache was on one side in 51.6% and accompanied by nausea and vomiting in 41.1% and 24.1%, respectively. Moreover, 53% and 41.9% experienced worsening of headaches by exercise and light, respectively. Tension headaches occurred more in older healthcare providers (P <0.05) and those who reported working night shifts (P=0.002). Healthcare providers with tension headaches reported having an intrusive leader and violence at work (P=0.038 and P=0.013, respectively). Caffeine consumption, emotional stress, and using oral contraceptive pills (OCP) were significantly correlated with migraine (P=0.023, P=0.017, and P=0.004, respectively). The reported headache affected the productivity of 62.59% of individuals. Conclusions Headache is common among healthcare providers in Al-Ahsa, Saudi Arabia. The study indicates that tension headache is associated with aging, night shifts, having an intrusive leader, and violence at work. In contrast, migraine is correlated with caffeine consumption, emotional stress, and OCP use. The productivity of healthcare providers is affected negatively by headaches.

A Qualitative Literature Search and Pilot Study of Online Support Groups for Patients With Dementia and Their Carers.

The ever-growing group of people living with dementia (PLWD) and their relatives face great challenges. The Covid 19 pandemic has once again placed a particular challenge on this vulnerable group. What started a decade earlier with telephone-based support groups experienced a real push during the pandemic in the form of video-based self-help services. The aim of this qualitative literature search in MEDLINE, EMBASE, CINAHL, and PsycINFO with keywords related to online, support group, caregiver, and dementia was to collect the reported experiences by the end of 2022. Peer reviewed journal papers were included when published and written in English. After the joint decision of two reviewers, it was decided to only include studies that were published in Medline. The results of the literature search are compared with experiences of the participants in a presentation group that was transformed into an online group at the time of the COVID-19 pandemic via Zoom. In search yielded a total of 129 articles. 113 articles described different types of interventions, 30 of which had a randomized design. The qualitative literature search showed on the one hand a high interest in online support groups but on the other hand that the effectiveness and efficacy in randomized trials is much less clear. In addition, we investigated the assessments and experiences of the participants in a presentation group that was transformed into an online group at the time of the COVID-19 pandemic via Zoom. This study demonstrates that PLWD and carers on virtual group meetings can express significant emotive capacity and enhanced connectivity with one another despite a diagnosis of mild to moderate dementia. Further research on entry criteria, concerns about online support services in general and necessary support for use is essential to develop the time- and location-independent possibility of video-based online self-help into an important form of support for both PLWD and their caregivers as an additional support option independent of exceptional pandemic situations.

Gender differences in cancer spousal caregiving: A systematic review.

OBJECTIVES: Cancer does affect not only the lives of the patients but also that of their spouses. The aims of this systematic review are to (i) explore the gender differences in the impact of caregiving for cancer on spousal caregivers, (ii) facilitate the conceptual understanding of gender differences in caregiving, and (iii) identify directions for future research and clinical practice targeting spousal caregivers. METHODS: A comprehensive search was conducted of the electronic databases of MEDLINE, PsycINFO, EBSCO, and CINAHL Plus for papers published in English between 2000 and 2022. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were used to identify, select, appraise, and synthesize the studies. RESULTS: A total of 20 studies from seven countries were reviewed. Findings of the studies were presented using the biopsychosocial model. Spousal caregivers of cancer patients suffered from physical, psychological, and socioeconomic morbidities, with female spousal caregivers reporting a higher level of distress. The gendered positioning of spousal caregivers in the societal context had further brought about over-responsibility and self-sacrifice among women. SIGNIFICANCE OF RESULTS: The gendered positions of cancer spousal caregivers further illustrated the gender differences in the caregiving experiences and consequences. Health-care professionals in routine clinical practice should be proactive in identifying physical, mental, and social morbidities among cancer spousal caregivers, particularly female ones, and providing timely interventions. Health-care professionals should recognize the pressing need for empirical research, political engagement, and action plans to address the health status and health-related behaviors of patients' spouses along the cancer trajectory.

Perception of care givers regarding danger signs of illness and practices followed in young infants (0-2 months) as per IMNCI at selected areas of Amritsar, Punjab: A qualitative study.

Background: In India, neonatal mortality contributes to over 64% of infant deaths, mostly occurring during the first week of life. Mortality rate in second month of life is also higher than at later ages. Delay in identification of warning signs of neonatal illness naturally postpones the initiation of treatment and referral to hospital. Materials and Methods: The study aimed to explore the perception of care givers regarding danger signs of illness and practices followed in young infants. Care givers who cared for the sick young infants during last six months were recruited using a convenient sampling technique and qualitative research approach. Five semi-structured interviews and one FGD were conducted using an interview and FGD guide. Data was analyzed manually by reading and rereading the transcribed verbatim leading to the emergence of themes, subthemes, and codes. Results: Data explored that excessive crying was perceived as a danger sign by entire mothers, and many of them were unable to recognize important warning signs. The delay in decision making for medical care-seeking also shows dwindling awareness. Additionally, mothers were adapting few unhygienic practices as home remedies leading to worsening the symptoms and making a call for additional infections which needs to be addressed by the health authorities at community level. Conclusion: Pronounced efforts are expected to raise mindfulness of mothers toward the significance of early identification of neonatal danger signs to stave off the high magnitude of neonatal mortality. Inclusion of excessive crying as neonatal danger sign is recommended as well.

Parental Perceptions of Family-Centred Supports for Children with Developmental Disabilities.

Family-centred interventions have long been advocated in paediatric practice and in public health, but their implementation is rarer with children experiencing developmental disabilities. Moreover, the uptake is lower in families from more socially deprived backgrounds. Yet there is robust evidence that such interventions bring benefits to the family caregivers as well as to the affected children. The present study emerged from a support service that had been located in a rural county in Ireland in which nearly 100 families of children with intellectual and developmental disabilities had participated. Using a qualitative research methodology, interviews were conducted with 16 parents who had taken part in the service with the aim of gaining insights into the ways a family-centred service had been of value to them. The themes identified in their responses were validated in two ways. All parents were given the opportunity to provide their perceptions using a self-completion questionnaire, and nearly 50% responded. In addition, seven health and social care staff who had referred families to the project were asked their views through personal interviews. The core theme to emerge was the focus placed on family engagement by the service, with four subthemes emerging: parental confidence boosted; children developed; community connections were made; and supportive staff. These insights should help existing health and social care services to become more family-centred and inform the development of new support services in response to the high levels of unmet needs among marginalized families in even the most affluent countries.

Exploring the Efficacy of an Online Training Programme to Introduce Mental Health Recovery to Carers.

Family carers often support people with mental ill-health, however, there is a dearth of research on the importance of recovery to mental health carers. This article describes the delivery and qualitative evaluation of an online training programme on recovery to a group of eleven carers. The participants considered their understanding of the meaning of recovery, differentiating between its personal and clinical nature. They highlighted the importance of carer involvement in the service users' professional support, alongside the need for carers to participate more widely in service development. Finally, the participants found the training useful in enabling them to recognise their own needs in a caring journey, particularly valuing its delivery by a service user and carer trainer. This study is limited by the small number of participants in this programme; however, this series of connected studies suggests its potential to be rolled out more widely, possibly embedded in Recovery Colleges.

Parental Burden and Quality of Life in 5q-SMA Diagnosed by Newborn Screening.

The aim of this study was to assess the psychosocial burden in parents of children with spinal muscular atrophy (SMA), detected by newborn screening (NBS), for which first pilot projects started in January 2018 in Germany. The survey, performed 1-2 years after children's diagnosis of SMA via NBS, included 3 parent-related questionnaires to evaluate the psychosocial burden, quality of life (QoL)/satisfaction and work productivity and activity impairment in the families. 42/44 families, detected between January 2018 and February 2020, could be investigated. Interestingly, statistical analysis revealed a significant difference between families with children that received SMN-targeted therapy vs. children with a wait-and-see strategy as to social burden (p = 0.016) and personal strain/worries about the future (p = 0.02). However, the evaluation of QoL showed no significant differences between treated vs. untreated children. Fathers of treated children felt more negative impact regarding their productivities at work (p = 0.005) and more negative effects on daily activities (p = 0.022) than fathers of untreated children. Thus, NBS in SMA has a psychosocial impact on families, not only in terms of diagnosis but especially in terms of treatment, and triggers concerns about the future, emphasizing the need for comprehensive multidisciplinary care. Understanding the parents' perspective allows genetic counselors and NBS programs to proactively develop a care plan for parents during the challenging time of uncertainty, anxiety, frustration, and fear of the unknown.

A different way of life: a qualitative study on the experiences of family caregivers of stroke survivors living at home.

There are approximately 1.3 million stroke survivors in the UK, with the majority of them relying on family caregivers for support. However, the needs of family caregivers are not routinely assessed by most services. The aim of this study was to explore the experiences of stroke family caregivers following the implementation of the Care Act, 2014. A total of 16 semi-structured, digitally recorded face-to-face qualitative interviews were conducted with a purposive sample of stroke family caregivers in north-west England. Thematic analysis was undertaken. Two themes were identified: the effects of caregiving and the unmet needs of the family caregivers. Despite changes to legislation, family caregivers of stroke survivors continue to experience challenges, such as financial problems, information needs, and a lack of respite and emotional support when providing care. Existing approaches to identifying and supporting caregiver needs are insufficient. Proactive approaches are required to ensure the needs of family caregivers are identified and addressed on a regular basis.

Informal care-giving and the intention to give up employment: the role of perceived supervisor behaviour in a cohort of German employees.

Current social policies in the European Union addressing employment, retirement and long-term care are expected to result in increasing employment rates among informal carers. The present investigation contributes to previous research by focusing on how specific work-related factors, in this case supervisor behaviour, may facilitate the fulfilment of the demands arising from paid work and care and ultimately influence the desire to give up employment. To this end, population data from the German Cohort Study on Work, Age, Health and Work Participation conducted in 2011 and 2014 are analysed (n = 3916). Three research hypotheses investigating the associations between care-giving, supervisor behaviour, the intention to give up employment and work-private-life conflict are tested by means of cumulative link models. The results suggest that the intention to give up employment is stronger among employed carers. In addition, the perception that one's supervisor is considerate towards subordinates and is effective in planning, coordinating work and solving conflicts is found to be negatively related to the desire to give up employment, especially among carers. The statistical analyses reveal that supervisor behaviour mediates the association between the level of work-private-life conflict and the intention to give up employment. It is concluded that the working conditions may exert a substantial influence on the levels of psychosocial load carers experience by facilitating or hindering the extent to which carers are allowed to accommodate their work schedules and job assignments to the conflicting demands of their dual role as workers and carers.

Capacitação do cuidador informal da pessoa dependente no domicílio, no autocuidado transferir-se / Empowering the informal caregiver of the dependent person at home in self-care transferring

O avanço dos conhecimentos na área da saúde ao longo dos tempos contribuiu para o aumento da esperança média de vida, segundo Ribeiro (2013), o aumento da população idosa, acompanhado do desenvolvimento e agravamento de doenças crónicas, apresentam- se como determinantes para o aumento do número de pessoas com elevado grau de dependência e, portanto, dependentes de terceiros no seu contexto familiar e meio habitual de vida. A inevitável associação destes dois fatores, implica a crescente necessidade de cuidados deste tipo de população, o que consequentemente potencia a necessidade da existência de cuidadores informais, cujo papel na maioria das situações é assumido pelo familiar cuidador (MARTINS et al, 2014). Neste sentido surgiu a necessidade de investimento na área dos cuidados no domicílio, uma vez que o seu objetivo consiste em proporcionar a mais elevada qualidade de vida possível ao doente/família/cuidador informal, nada se afigura mais importante que a capacitação do C.I. em aspetos tão simples como o autocuidado, mas ao mesmo tempo tão exigentes fisicamente como o autocuidado transferir-se, a prevenção das complicações inerentes á imobilidade da pessoa dependente, bem como a prevenção das lesões músculo- esqueléticas do cuidador, sendo cruciais para um cuidado de boa qualidade. Neste sentido, e inserido no desenvolvimento do estágio de Natureza Profissional, surgiu a presente pesquisa que se tratou de um estudo sobre a capacitação do Cuidador informal da pessoa dependente no domicílio no autocuidado transferir-se, cujo objetivo geral é Capacitar o Cuidador Informal para cuidar da pessoa dependente no âmbito do autocuidado transferir-se. E como objetivos específicos foram definidos os seguintes: • Identificar que conhecimentos os cuidadores informais de pessoas dependentes no domicílio possuem sobre complicações da imobilidade; • Conhecer quais as dificuldades dos cuidadores informais no que concerne aos posicionamentos /mobilizações; • Identificar as fragilidades e as necessidades de formação dos cuidadores informais; • Realização de ações de formação, no domicílio, formais e informais de acordo com as fragilidades formativas dos cuidadores informais;Compreender as razões que levam os cuidadores informais á não adesão dos levantes dos seus dependentes. Os métodos utilizados para a recolha de dados foram, a observação direta em campo de estágio, realização de entrevista aos cuidadores de pessoas dependentes no domicílio. Este trabalho teve como finalidade contribuir para a prevenção das complicações inerentes à imobilidades das pessoas dependentes e contribuir para a prevenção das lesões músculo-esqueléticas do cuidador de pessoas dependentes. Com este presente estudo, foi possível mostrar que a maioria dos C.I.´s, são mulheres, filhas dos dependentes e a vivenciar uma situação de desemprego. Não tiveram formação para a realização desta tarefa de cuidar e muitas desenvolveram esta capacidade vendo fazer a outros, ou empiricamente. A maioria das cuidadoras não se sentem capazes de mobilizar o seu dependente sozinhas e por isso mesmo adotam posições viciosas para o fazer, desenvolvendo LME. O método utilizado nesta pesquisa foi a investigação-ação na qual o investigador foi corrigindo/agindo sobre o C.I. durante a sua pesquisa capacitando o C.I. no autocuidado transferir-se. Tratou-se de uma investigação qualitativa, na qual o investigador após reunir os dados sobre a realidade dos C.I.´s e identificado necessidades dos mesmos, desenvolveu uma ação de formação de modo a capacitar o Cuidador Informal, deixando material de apoio como manual do Cuidador, panfletos e material multimédia (vídeo) material de apoio técnico, para esse efeito. Por fim , constatou-se que pelas lacunas existentes ao nível desta problemática, faz todo o sentido, a criação de programas de intervenção de suporte à prevenção das complicações da imobilidade, o desenvolvimento de estudos que gerem modelos de intervenção e que visem promover o autocuidado transferir-se e a capacitação do C.I., bem como o apoio e remuneração dos C.I.´s, pois estes vêm esta sua tarefa como uma imposição social, castrando todo o seu desenvolvimento financeiro e social, tornado pesaroso o cuidar dos seus dependentes.

The advancement of knowledge in the area of health over time has contributed to the increase in average life expectancy, according to Ribeiro (2013), the increase in the elderly population, accompanied by the development and worsening of chronic diseases, present themselves as determinants for the increase in the number of people with a high degree of dependence and, therefore, dependent on third parties in their family context and usual way of life. The inevitable association of these two factors implies the growing need for care in this type of population, which consequently enhances the need for informal caregivers, whose role in most situations is assumed by the family caregiver (MARTINS et al, 2014). In this sense, the need for investment in the area of home care arose, since its objective is to provide the highest possible quality of life to the patient/family/informal caregiver, nothing seems more important than the training of the C.I. in aspects as simple as self-care, but at the same time as physically demanding as self-care transferring oneself, the prevention of complications inherent to the immobility of the dependent person, as well as the prevention of musculoskeletal injuries of the caregiver, being crucial for a care of good quality. In this sense, and inserted in the development of the Professional Nature stage, the present research emerged, which was a study on the training of the informal caregiver of the dependent person at home in the self-care transference, whose general objective is to train the Informal Caregiver to care of the dependent person within the scope of self-care to transfer. And as specific objectives, the following were defined: • Identify what knowledge informal caregivers of dependent people at home have about immobility complications; • Knowing the difficulties of informal caregivers regarding placements/mobilizations; • Identify weaknesses and training needs of informal caregivers; • Carrying out formal and informal training actions at home, according to the training weaknesses of informal caregivers; • Understand the reasons that lead informal caregivers to non-adherence to the uprisings of their dependents. The methods used for data collection were direct observation in the internship field, interviews with caregivers of dependent people at home. This study aimed to contribute to the prevention of complications inherent to the immobility of dependent people and to contribute to the prevention of musculoskeletal injuries in caregivers of dependent people. With this present study, it was possible to show that most C.I.'s are women, daughters of dependents and experiencing a situation of unemployment. They were not trained to perform this task of caring and many developed this ability by watching others do it, or empirically. Most caregivers do not feel capable of mobilizing their dependent on their own and therefore adopt vicious positions to do so, developing SCI. The method used in this research was the action investigation in which the researcher corrected/acted on the C.I. during its research enabling the C.I. in self-care transfer. It was a qualitative investigation, in which the researcher, after gathering data on the reality of the C.I.'s and identifying their needs, developed a training action in order to train the Informal Caregiver, leaving support material such as the Caregiver's manual, pamphlets and multimedia material (video) technical support material for this purpose. Finally, it was found that due to the existing gaps in terms of this problem, it makes perfect sense to create intervention programs to support the prevention of immobility complications, the development of studies that generate intervention models and that aim to promote self-care transfer and the training of the C.I., as well as the support and remuneration of the C.I.'s, as they see their task as a social imposition, castrating all their financial and social development, making caring for their dependents regretful.

[Training caregivers in spiritual care]. / Former les soignants au spiritual care.

By asking the question of training caregivers in Spiritual care, is it adding yet another task to these professionals already overwhelmed with ever more sophisticated tasks? Does that mean that we should take away from the "specialists" in spiritual care the essential part of their work? These questions arise and are legitimate.

Expressed emotion of caregivers among schizophrenic patients visiting Jimma University Medical Center Psychiatry Outpatient Unit, Southwest Ethiopia.

BACKGROUND: Expressed emotion (EE) measures the emotion among caregivers of schizophrenic patients and is predictive of symptom levels in a range of medical and psychiatric conditions. It is worth assessing expressed emotion and associated factors among caregivers of patients with schizophrenia in Ethiopia since there is limited data on this issue in this part of the world. OBJECTIVE: To assess the status of expressed emotions and selected patients' clinical factors among caregivers of patients with schizophrenia attending Psychiatry Outpatient Unit of Jimma University Medical Center, Southwest Ethiopia, 2019. METHOD: A cross-sectional study was conducted on 422 caregivers of schizophrenic patients using a consecutive sampling technique. Data were collected using a structured interviewer administrated questionnaires (Family Questionnairre) which assessed the level of expressed emotion. Data were entered into Epidata 4.4 and analyzed by Statistical package for social science (SPSS) version 25. Descriptive statistics was which used to summarize data, bivariate logistic regression was done to identify candidate variables for multivariable logistic regressions and the association between expressed emotion and predictor variables was identified by using multiple logistic regression models. RESULTS: High expressed emotion was observed in 43.6% of respondents while caring for schizophrenic patients for about 6-8 years, having 3-4 episodes of the illness which was significantly associated with high expressed emotion. CONCLUSIONS: This study revealed that there is a high level of expressed emotion among caregivers. It also showed that increment in the episode of the illnesses had a significant association with high caregivers' expressed emotion. Hence, health care systems which provide interventions for patients with schizophrenia need to design proper strategies to address caregivers' needs as well.

Exploring the relationship between co-worker and supervisor support, self- confidence, coping skills and burnout in residential aged care staff.

BACKGROUND: Staff working in residential aged care facilities face unique challenges and stressors in their workplaces which increase their risk for occupational burnout. Burnout in this workforce results in low job satisfaction, increased levels of absenteeism and poor retention rates. Given Australia's ageing population and the demand for residential aged care staff, it is imperative to explore predictors of burnout in this cohort in order to help staff prevent and manage burnout. METHODS: This study examined the extent to which co-worker and supervisor support, self-confidence and adaptive coping skills predicted burnout among residential aged care staff, after controlling for staff demographics, organisational climate and work patterns. One hundred and thirty three residential aged care staff across Australia were surveyed using online questionnaires measuring levels of co-worker and supervisor support, self- confidence, adaptive coping skills and burnout. RESULTS: Regression analyses indicated that, overall, co-worker and supervisor support, self-confidence, and adaptive coping predicted each dimension of burnout (emotional exhaustion, depersonalization and personal accomplishment). After controlling for covariates and other predictors: confidence significantly predicted all three dimensions; support significantly predicted emotional exhaustion and depersonalization, and adaptive coping significantly predicted emotional exhaustion. CONCLUSION: These findings suggest that co-worker and supervisor support, self- confidence and adaptive coping skills need to be addressed to prevent and manage occupational burnout for residential aged care staff in Australia.

Recommendations from the IRDiRC Working Group on methodologies to assess the impact of diagnoses and therapies on rare disease patients.

Rare disease patients face many challenges including diagnostic delay, misdiagnosis and lack of therapies. However, early access to diagnosis and therapies can modify the management and the progression of diseases, which in return positively impacts patients, families and health care systems. The International Rare Diseases Research Consortium set up the multi-stakeholder Working Group on developing methodologies to assess the impact of diagnoses and therapies on rare disease patients. Using the patients' journey on the diagnostic paradigm, the Working Group characterized a set of metrics, tools and needs required for appropriate data collection and establishment of a framework of methodologies to analyze the socio-economic burden of rare diseases on patients, families and health care systems. These recommendations are intended to facilitate the development of methodologies and to better assess the societal impact of rare diseases.

[COVID-19 protective measures in nursing homes: Between autonomy and care - Results of an interview study]. / Covid-19 Schutzmaßnahmen in Alten- und Pflegeheimen: zwischen Autonomie und Fürsorge ­ Ergebnisse einer Interviewstudie.

Definition of the problem: This interview study investigated ethical issues in long-term care facilities from the perspective of caregivers during the coronavirus disease (COVID-19) pandemic. Due to the explorative as well as descriptive methodological approach, interview data are available and can be assigned to four central topics, which reveal a complex and sometimes conflictual reality of work and life in long-term care during the pandemic. On the one hand, the protective measures taken by the state and the institutions, as well as the resulting restrictions on the personal freedom of the residents are critically reflected and the degree of self-determination of the residents of nursing homes in the pandemic is questioned. On the other hand - given the pandemic-related measures - nursing activities in long-term care facilities as a place of work and life are described as challenging, especially regarding the changed nursing processes and quality of care, as well as due to the changed quality of relationships with the residents. Arguments: These four topics can basically be assigned to the ethical principles of autonomy and care and present a relevant concretization of the principle-oriented ethical challenges in long-term care during the COVID-19 pandemic. In the synopsis and interpretation of the results, it becomes apparent that the interviewed caregivers closely link the observance and implementation of the autonomy principle in everyday nursing care with the principle of care and the resulting well-being of the residents. Conclusions: Our results clearly show that the paradigm shift in long-term care, which has been developed over the last few decades, was (temporarily massively) weakened by the COVID-19 pandemic. In addition, the reported moral uncertainties and conflicts make it clear that caregivers need support regarding the ethical reflection of their nursing actions and that a sustainable integration of ethics counselling in long-term care facilities may be a possible approach to a solution.

The role and contribution of family carers accompanying community-living older people with cognitive impairment to the emergency department: An interview study.

BACKGROUND: Older people with cognitive impairment may have lack of understanding of their health and ability to co-ordinate care needs. Family carers play a key role in supporting older people but the role of family carers in emergency discharge has not been explored well. OBJECTIVE: To explore and describe the role and contribution of family carers accompanying the older person with cognitive impairment to the emergency department. DESIGN: A exploratory descriptive study was conducted in which telephone interviews were performed. SETTING: Three emergency departments located in metropolitan Sydney, Australia; two major tertiary referral centres and one district hospital. The EQUATOR research checklist (COnsolidated criteria for REporting Qualitative research) (COREQ) was used to report the qualitative study. SUBJECTS: Participants were family carers accompanying people aged ≥64 years with cognitive impairment; with non-urgent triage classifications; English speaking and eligible for discharge home. Semi-structured telephone interviews were conducted 2 to 4 weeks after the older person was discharged. Data were reflexively thematically analysed in NVIVO independently by three researchers. RESULTS: Twenty-eight interviews were conducted. Three key themes were evident: (1) 'communicating knowledge of the older person's health status and usual behaviour'; (2) 'providing advocacy, translation, surrogacy and care co-ordination'; and (3) 'ensuring safe transition from the emergency department to home'. CONCLUSIONS: Study findings detailed how family carers created an important safety net while the older person was in emergency, through advocacy and the communication of vital health information. More importantly, their knowledge influenced the healthcare management of the older person and ensured safe discharge and co-ordination of care in the community. RELEVANCE TO CLINICAL PRACTICE: The study identified for older persons with cognitive impairment a safe stay in the ED and transition home from hospital was supported by family carers and assisted to ensure that discharge information was understood and adhered to optimise wellbeing and prevent adverse outcomes. The findings of this study can inform discharge processes for nurses, nurse practitioners and doctors. Additionally, processes to support family carer engagement would optimise older person compliance and better inform healthcare decision-making and choice for older peoples, family carers. The findings of the study should inform discharge processes to minimise risk of readmission, financial burden and harm.