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BACKGROUND AND AIMS: Arginase 1 deficiency (ARG1-D) is a ultrarare disease with manifestations that cause mobility and cognitive impairment that progress over time and may lead to early mortality. Diseases such as ARG1-D have a major impact also outside of the health care sector and the aim of this study was to estimate the current burden of disease associated with ARG1-D from a societal perspective. METHODS: The study was performed as a web-based survey of patients with ARG1-D and their caregivers in four European countries (France, Portugal, Spain, United Kingdom). The survey was distributed at participating clinics and included questions on e.g. symptoms (including the Gross Motor Function Classification System, GMFCS, and cognitive impairment), health care use, medication, ability to work, caregiving, and impact on health-related quality-of-life (HRQoL) using the EQ-5D-5L. RESULTS: The estimated total mean societal cost per patient and year was £63,775 (SD: £49,944). The cost varied significantly with both mobility impairment (from £49,809 for GMFCS level 1 to £103,639 for GMFCS levels 3-5) and cognitive impairment (from £43,860 for mild level to £99,162 for severe level). The mean utility score on the EQ-5D-5L for patients was 0.498 (SD: 0.352). The utility score also varied significantly with both mobility impairment (from 0.783 for GMFCS level 1 to 0.153 for GMFCS level 3-5) and cognitive impairment (from 0.738 for mild level to 0.364 for severe level). CONCLUSIONS: Similar to other studies of rare diseases, the study is based on a limited number of observations. However, the sample appear to be reasonably representative when comparing to previous studies of ARG1-D. This study shows that ARG1-D is associated with a high societal cost and significant impact on HRQoL. Earlier diagnosis and better treatment options that can postpone or withhold progression may therefore have a potential for improved HRQoL and savings for the patient, caregiver, and society.

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OBJECTIVE: Caregivers play an essential role in supporting people with Alzheimer's disease globally. User-informed research is vital to developing trans-cultural guidelines for dementia support organisations. While coping strategies of caregivers are well researched, the 'coping-effectiveness' framework falls short of representing all caregiver needs. Our aim was to develop a robust and inclusive, globally applicable framework of caregiver-informed support needs. METHODS: In partnership with Alzheimer's Disease International and Roche, we conducted qualitative online semi-structured interviews with 34 family caregivers from the Global North (UK, US) and Global South (Brazil, South Africa) in the COVID-19 context. Participant-generated photographs helped encourage discussions of hidden contextual issues. Iterative inductive narrative analysis of interviews and photographs was carried out with input from global and national charity and industry sectors. RESULTS: We identified a framework of four cross-cultural caring approaches with implications for support: (1) Empathising, using emotion-focused strategies to develop strong expertise and coping skills, with time specific information, psychosocial and peer support needs. (2) Organising, using problem-focused strategies, with strong narratives of expertise and advocacy which benefited from early structured information and professional confirmation. (3) Non-identifying caregiving, where daily aspects of caring occurred without specialist knowledge and expertise, and caregivers sought assistance in managing disease-related support. (4) Reluctance, where struggling with unwanted caring responsibilities meant caregivers looked to professionals to carry out daily care. CONCLUSION: Our findings move beyond the 'coping-effectiveness' framework of support to suggest a novel 'role-needs' framework. Our approach supports inclusive ways of tailoring support to fit individual caregiver circumstances globally.

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OBJECTIVES: Care for community-dwelling people with dementia is frequently delegated to relatives, who find themselves in the role of informal caregivers with no practical management knowledge. This situation exposes caregivers to increased risk for emotional wellbeing. The current study aims to test whether the integration of the efficacy of an immersive virtual reality (VR) experience into an online psychoeducational program impacts caregiver empathy and therefore emotional wellbeing. METHODS: One-hundred informal caregivers of mild-to-moderate Alzheimer's disease (AD) patients will be enrolled and randomly assigned to (i) an online psychoeducational program (control arm); or (ii) an online psychoeducational program integrated with VR (experimental arm). VR will consist of 360-degree videos involving the caregivers to an immersive experience of dementia symptoms from the patient's perspective. Before, after the intervention and after 2 months, all participants will complete validated clinical scales for caregiver burden and anxiety (primary outcomes) and sense of competence and dispositional empathy (secondary outcomes). A subsample of 50 participants will also undergo MRI exam, including structural and functional (resting-state and task-functional MRI [fMRI]) sequences. The fMRI task paradigm will use emotional stimuli to evaluate the neural correlate of empathy, by stressing its cognitive and affective components. The main outcome will be the change in the clinical assessment; the secondary outcome will be the change in brain connectivity of networks subserving the empathic and emotional functioning. RESULTS: We expect that the psychoeducational program will decrease anxiety and stress, enabling caregivers to perceive themselves capable of managing AD patients at home, educating them on symptom handling and boosting their cognitive empathy. In the experimental intervention, the VR-based experience will act as an add-on to psychoeducation, leading to greater improvement in the assessed clinical dimensions. VR should, in fact, enable a deeper understanding of disease symptoms and improve caregivers' cognitive empathy. We expect that the experimental intervention will result in deeper comprehension of disease symptoms and further strengthen caregivers' cognitive empathy. At the neural level, we expect to observe increased activation in circuits subserving cognitive empathy and decreased activation in circuits underlying affective empathy. CONCLUSIONS: To the best of our knowledge, this will be the first randomized controlled trial assessing the effect of combining psychoeducational interventions with VR-based experience in caregivers, and assessing both clinical and imaging outcomes. TRIAL REGISTRATION: Registered in ClinicalTrials.gov (NCT05780476).

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OBJECTIVE: To assess the effectiveness of a psychoeducational intervention program (PIP) compared to standard attention in reducing caregiver burden after the intervention (at 4 months) and at follow-up (at 8 months). METHODS: A multicenter, evaluator-blind, randomized controlled trial. The experimental group received a PIP intervention consisting of 10 weekly group sessions, while the control group received standard attention. The primary outcome was measured as the change scores from baseline on the caregiver's burden (ZBI). The secondary outcomes evaluated included caregiver mental health (GHQ-28), anxiety (STAI), and depression (CES-D). Trial registration: ISRCTN16513116. RESULTS: The sample comprised 76 informal caregivers (41 allocated in the intervention condition and 35 in the control). The caregiver's burden (ZBI) did not show significant differences between groups at 4 months or 8 months. There were favorable and significant changes in the caregiver's mental health (GHQ) and depression (CES-D) at 4 months in the PIP group. There were no significant differences between groups in anxiety during the trial. CONCLUSIONS: The PIP intervention group reported positive effects on general mental health and depression after the intervention but not at follow-up. We need more studies which interventions follow expert recommendations and can sustain positive results over time.

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Introduction: After injury, survivors of moderate to severe traumatic brain injury (msTBI) depend on informal family caregivers. Upwards of 77 % of family caregivers experience poor outcomes, such as adverse life changes, poor health-related quality of life, and increased depressive symptoms. Caregivers frequently report minimal support or training to prepare them for their new role. The majority of previously developed caregiver and caregiver/survivor dyad interventions after msTBI focus on providing information to either survivors only, or to long-term caregivers, rather than to the new caregiver. This manuscript describes the protocol of an ongoing randomized control trial, Caregiver Wellness after TBI (CG-Well), developed to provide education, support, and skill-building to caregivers of adults with msTBI, beginning when the survivor is early in the clinical course. Methods: Within two weeks of admission to the ICU, participants are randomized to CG-Well online modules (intervention group, n = 50 dyads) or information, support, and referral (ISR) e-bulletins that exist in the public domain (control group, n = 50 dyads) over the first six months after their family member's msTBI. Both groups receive regular phone calls. The primary outcome is intervention satisfaction at six months. Results: Enrollment began in March 2022 and is projected to complete October 2024. We have enrolled approximately 70 % of participants at this time. Primary analysis completion is anticipated April 2025. Discussion: This RCT is designed to evaluate caregiver satisfaction by addressing the need for tailored supportive care for caregivers of msTBI beginning during the ICU admission. Trial registration: Clinicaltrials. gov Registration Number: NCT05307640.

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BACKGROUND: In China, caregiving for cancer patients is primarily the responsibility of family members. This role often exposes family caregivers to the contemplation of mortality. Death anxiety among family caregivers may influence the care they offer to cancer patients. OBJECTIVE: This study aims to evaluate the prevailing level of death anxiety among Chinese family caregivers of cancer patients and identify its influencing factors. DESIGN: This cross-sectional study followed the STROBE statement. METHODS: A total of 220 family caregivers of cancer patients were recruited from a prominent tertiary hospital in southern China. The survey included a general information questionnaire, the Collett-Lester Fear of Death Scale, the Social Support Rating Scale and the Simple Coping Style Questionnaire. In addition to descriptive statistics, ANOVA, mean differences, correlations and regression analyses were computed. RESULTS: The average score for death anxiety among family caregivers of cancer patients was 104.27 ± 21.02. Death anxiety was negatively correlated with a positive coping style and social support. Multiple linear regression analysis revealed that marital status, death education, patients' fear of death and coping style accounted for 41.0% of the variance in death anxiety among family caregivers. CONCLUSIONS: Family caregivers of cancer patients experienced a moderate level of death anxiety. Individuals who were unmarried or divorced, lacked death education, had negative coping styles or cared for patients with fear of death tended to have high levels of death anxiety. RELEVANCE TO CLINICAL PRACTICE: Healthcare providers should act as credible educators to reduce caregivers' death anxiety by imparting positive coping styles and accurate knowledge and values about death so caregivers can provide high-quality care to patients.

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Brett Kahr has referred to the death of Mary Main as the loss of "the queen of attachment research." However, how well is Main's work actually known? In this portrait and tribute, I argue that Main's transformative contributions have become a taken-for-granted part of the basic environment of attachment research, but that readers have faced obstacles in understanding and responding to their strengths and limitations. Drawing from interviews with Main, in this paper I describe some of her early life experiences and mental and physical health challenges, which she felt had influenced what was possible for her in her research. I then highlight less well-known aspects of her ideas regarding the role of attention within attachment strategies, the nature of disorganised attachment, the implications of alarming caregiving behaviours, and what is ultimately measured by the Adult Attachment Interview. My goal throughout is to help reader see both how much Main's rich and exciting works still have to teach, and identify their many loose threads still to follow.

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OBJECTIVES: To investigate the relationship among patients' apathy, cognitive impairment, depression, anxiety, and caregiver burden in amyotrophic lateral sclerosis (ALS). DESIGN: A cross-sectional study design was used. SETTING: The study was conducted at a tertiary hospital in Wuhan, Hubei, China. PARTICIPANTS: A total of 109 patients with ALS and their caregivers were included. OUTCOME MEASURES: Patients with ALS were screened using the Edinburgh Cognitive and Behavioural Screen, Beck Depression Inventory-II, Generalised Anxiety Disorder-7 and Apathy Scale to assess their cognition, depression, anxiety and apathy, respectively. The primary caregivers completed the Zarit Burden Interview. The association between apathy, cognitive impairment, depression, anxiety and caregiver burden was analysed using logistic regression. Mediation models were employed to investigate the mediating effect of patients' apathy on the relationship between depression/anxiety and caregiver burden. RESULTS: Patients in the high caregiver burden group exhibited significantly higher levels of depression, anxiety and apathy compared with those in the low caregiver burden group (p<0.05). There was a positive association observed between caregiver burden and disease course (rs=0.198, p<0.05), depression (rs=0.189, p<0.05), anxiety (rs=0.257, p<0.05) and apathy (rs=0.388, p<0.05). There was a negative association between caregiver burden and the Revised ALS Functional Rating Scale (rs=-0.275, p<0.05). Apathy was an independent risk factor for higher caregiver burden (OR 1.121, 95% CI 1.041 to 1.206, p<0.05). Apathy fully mediated the relationship between depression and caregiver burden (ß=0.35, 95% CI 0.16 to 0.54, p<0.05) while partially mediating the relationship between anxiety and caregiver burden (ß=0.34, 95% CI 0.16 to 0.52, p<0.05). CONCLUSIONS: Apathy, depression and anxiety exerted a detrimental impact on caregiver burden in individuals with ALS. Apathy played a mediating role in the relationship between depression and caregiver burden and between anxiety and caregiver burden. These findings underscore the importance of identifying apathy and developing interventions for its management within the context of ALS.

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AIM: To evaluate whether Preparedness Assessment for the Transition Home (PATH), a validated instrument assessing gaps in caregiver commitment and capacity to care for a patient with a disabling condition, would be helpful to identify gaps in preparing primary caregivers of patients with glioblastoma multiforme (GBM). DESIGN: A descriptive survey design with quantitative and qualitative data. METHODS: Former primary caregivers of patients with GBM were invited to complete a 17-question online survey during February and March 2023. Former caregivers, each having completed their caregiver journeys, are able to offer a unique perspective across the illness trajectory. Participants reviewed a copy of the PATH instrument and (a) responded to questions rating PATH helpfulness at each stage of the illness trajectory and (b) provided open-ended feedback on the instrument. RESULTS: One hundred seventeen of the 124 participants reported the PATH instrument would be helpful across all stages of the illness trajectory. While there were no statistically significant differences across the illness phases, response trends indicated using the PATH instrument earlier in the illness trajectory would have been more helpful to them as caregivers. Qualitative thematic analysis feedback indicated the most significant gap caregivers faced was education on the effects of the illness and treatment. CONCLUSION: It is vitally important to prepare and support caregivers. A validated instrument can identify unmet needs and inform care decisions. IMPLICATIONS FOR THE PROFESSION: Patient discharge plans should be guided by the needs and preferences of patients and caregivers. Identifying gaps in education and preparedness early in the illness trajectory may inform the care team of unmet needs, allowing them to tailor resources and support to improve outcomes for patients with GBM and their caregivers. IMPACT: Patient discharge plans should be guided by the needs and preferences of patients and caregivers. Identifying gaps in education and preparedness early in the illness trajectory may inform the care team of unmet needs, allowing them to tailor resources and support to improve outcomes for patients with GBM and their caregivers. PATH has the potential to inform healthcare professionals to develop customised care plans including education, resources and support for caregivers and patients with life-threatening illness. REPORTING METHOD: Study adheres to the STROBE reporting method. PATIENT OR PUBLIC CONTRIBUTION: Prior to deploying the survey to study participants, in addition to testing by study collaborators (authors), the survey was tested and feedback was received from graduate students and from administrators of the private Facebook group where the survey was promoted to study participants.

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INTRODUCTION: In sub-Saharan Africa (SSA), the number of cancer deaths is expected to double between 2020 and 2030; however, financial costs remain a barrier to accessing cancer treatment and care. There is an evidence gap on financial toxicity related to cancer care in SSA, both for the patient and for the family members providing care. Against this background, this review aims to analyse cancer care-related financial toxicity for the patient and family caregivers in SSA. METHODS AND ANALYSIS: A comprehensive search of peer-reviewed articles in the English language reporting the financial burden of cancer care on patients and family caregivers in SSA will be conducted using PubMed, Scopus and Web of Science from 1 January 2000 to 13 October 2023. Two researchers will independently review the titles, abstracts and full-text articles, and any disagreements will be resolved through consensus. A risk of bias assessment will be conducted using the assessment tools from the Joanna Briggs Institute Critical Appraisal Checklist. A quantitative and narrative synthesis of included studies, including the prevalence of financial toxicity of cancer care in SSA, will be developed. The review will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. ETHICS AND DISSEMINATION: Ethical review is not required because this review draws on published literature. The results will be presented at leading cancer and public health conferences, published in peer-reviewed journals and disseminated via website posts and social media channels to improve access to cancer care and to facilitate evidence-based policymaking in SSA. PROSPERO REGISTRATION NUMBER: CRD42023469011.

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INTRODUCTION: Latinx Millennial caregivers are an understudied minority group in the United States. Due to life stage and cultural values, these caregivers struggle to balance conflicting priorities with career, family, and caregiving. They also face systemic barriers and healthcare disparities. METHODS: Participants (N = 29) were recruited locally and nationally. Qualitative data were collected using five focus groups and one individual interview. Interviews were analyzed by seven coders using thematic analysis with an inductive approach. RESULTS: Meta-themes included (a) the Latinx experience with culture, immigrant status, and structural barriers; and (b) being a super caregiver: being everything to everyone. Additional main themes were identified including family well-being, occupational and financial well-being, social support dynamics, challenges and rewards of family caregiving, and coping strategies. DISCUSSION: Clinical interventions for Latinx Millennial caregivers should address cultural background, value of family/community, and systemic barriers for care and support.

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BACKGROUND: While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interpret. Carers remain undersupported with a lack of dedicated, effective, evidence-based programs. We will conduct a meta-review to synthesize this evidence and determine the state of science in this field. OBJECTIVE: This study aims to address the question, "what psychosocial interventions are available to promote the well-being of carers for people with cancer?" METHODS: A meta-review will synthesize the relevant reviews of psychosocial interventions that have been developed and evaluated with carers for people with cancer. A total of 4 electronic databases (PsycInfo, MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews) will be searched for reviews published between January 2013 and December 2023. A team-based approach will be taken for screening and assessment of the returned records against the eligibility criteria to determine inclusion. Included reviews will be critically appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Relevant data on study characteristics, carer and patient populations, intervention details, and psychosocial outcomes will be extracted, synthesized, and the findings will be presented in a narrative format. RESULTS: It is anticipated that the study will be completed by October 2024. CONCLUSIONS: Ensuring that carers have access to evidence-based programs that promote their well-being as they care for loved ones is critical. This meta-review will contribute to program development and translation efforts by providing a clear picture of the intervention evidence base of carers of patients with cancer and identifying notable strengths, weaknesses, and gaps across the literature. The findings are anticipated to offer future directions to advance research in the field. TRIAL REGISTRATION: PROSPERO (CRD42023403219); https://tinyurl.com/4tnzv49s. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56403.

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BACKGROUND: Parents of children with cancer face bio-psycho-social-spiritual concerns which can significantly reduce quality of life (QoL). We examined the impact of an integrative oncology (IO) intervention on QoL-related concerns among parents of children in a pediatric hematology-oncology department. MEASURES: The study was prospective, controlled, nonrandomized and patient-preferenced. Parents of children recently (≤6 weeks) diagnosed with cancer were assessed using the measure yourself concerns and wellbeing (MYCaW), Edmonton Symptom Assessment Scale (ESAS) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Parents in both groups were reassessed after three weeks. INTERVENTION: An IO consultation was provided, with training in daily relaxation-breathing and manual treatments, and guidance on herbal medicine. OUTCOMES: Of 68 parents consenting to participate, 37 (54%) underwent the intervention with 31 serving as controls. Multivariate analysis found the IO intervention group to contain more Hebrew-speakers (OR=5.96, 95% CI=1.3-27.3, P=0.022); females (OR=5.23, 95% CI=1.1-24.8, P=0.038); and report pain (OR=1.2, 95% CI=1.0-1.4, P=0.045) and impaired appetite on ESAS (OR=1.23, 95% CI=1.01-1.48, P=0.034) when compared to controls. Only the intervention group showed improved baseline-to-3-week scores for physical functioning (P<0.001), cognitive functioning (0=0.018) and fatigue on EORTC (P<0.001); and for ESAS appetite (P<0.001) and anxiety (P=0.02). ESAS sleep increased only in controls (P=0.029). CONCLUSIONS/LESSONS LEARNED: IO interventions in pediatric hematology-oncology addressing QoL-related concerns among parents are feasible, potentially increasing predominantly physical symptoms and functioning. Further research is needed to confirm these "real-world" clinical outcomes, and the role of IO in "Caring for the Caregiver".

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Objectives: To test the psychometric properties of several dementia care-related scales among Latinos in the US. Design: We leveraged secondary baseline data from a one-arm mHealth trial on dementia caregiver support. We included 100 responses for caregiver-focused scales and 88 responses for care recipient-focused scales. Scales included the Neuropsychiatric Inventory Questionnaire Severity and Distress scales, six-item Zarit Burden Inventory, Ten-item Center for Epidemiologic Studies Depression Scale, Geriatric Depression Inventory, Quality of Life in Alzheimer's Disease, and Single-item Satisfaction With Life Scale. We calculated concurrent validity using Pearson and Spearman correlations and expected correlations amongst all variables in line with the Stress Process Framework. We calculated internal consistency reliability using Cronbach's alpha. Results: All concurrent validity correlations followed the expected directionality, with 19/21 inter-scale correlations in the total sample reaching statistical significance (p<0.05), and 17/21 reaching at least a low correlation (0.3). Cronbach's alpha ranged from 0.832 to 0.879 in all scales in the total sample. Conclusion: The English and Spanish caregiver-administered scales tested in this manuscript have good psychometric properties. Clinical Implications: The dementia care-related scales are now appropriately available for use among US Latinos in research and clinical contexts.

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The objective of this study was to understand gynecological cancer (GC) survivors' and their informal caregivers' perceptions about the usability of an educational resource to support their transition from primary cancer treatment into surveillance and/or recovery. After developing an empirical- and experiential-informed educational resource, we used a semi-structured questioning process to understand GC survivors and their caregivers' perceptions about its usability. Data were collected via online focus groups or 1:1 interviews that were audio recorded and transcribed. We used thematic analysis to analyze the data. Ten participants who were survivors or informal caregivers of cervical, ovarian, or uterine/endometrial cancer participated in two rounds of data collection. We grouped qualitative data into two themes: (1) reputable, relevant, and accessible education reduces uncertainty and promotes connection, and (2) individualized delivery of education provided by trusted cancer clinicians. The transition from treatment to surveillance is a challenging time for which reputable, relevant, and accessible educational resources are useful to facilitate an understanding about and self-management of survivorship-related concerns. Survivors and caregivers look to clinicians to provide reputable education to address their needs. This education should be diverse in content and referred to repeatedly throughout the cancer trajectory.

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BACKGROUND: End of traditional institutionalized psychiatric care, diagnostic complexities, and associated stigma often negatively impact the social networks of caregivers, making them experience social isolation. Not the "identified patients", caregiver perspectives are typically overlooked further adding to anticipatory stigma resulting in social death among them. Caregiving experience results in developing coping skills, preventing carers from responding to the nuances of the context, and identifying the useful rules- "Experiential Avoidance". Psycho-education is typically combined with other formal treatment programs for case conceptualization, and to provide a clear rationale for the treatment approach but less as a distinct psychotherapy. Borrowing the philosophy of Functional Contextualism, the present study developed a "Present-Moment Awareness" guided psychoeducational intervention. The aim was to reduce schizophrenia caregiver burden and anticipatory stigma and promote the value of caregiver participation as 'experts by experience'. METHOD: Five family caregivers of remitted schizophrenia patients were recruited using purposive sampling. Pre-post measure was taken on caregiver burden, caregiving experience, sense of personal mastery, and caregiving competence. Results were analysed quantitatively and qualitatively. RESULTS: A significant decrease in caregiver burden, stigma, and negative effects on the family in post-intervention was observed. Self-compassion led to a rise in a sense of empowerment. CONCLUSION: A caregiver-centred "Present-Moment Awareness" guided psycho-education for schizophrenia caregivers can be considered a possible means to address perceived stigma in caregivers and to reduce associated distress of carers.

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BACKGROUND: Telemedicine is a means of providing efficient treatment for children with complex chronic conditions and/or subsidiary palliative paediatric care. AIM: To evaluate how satisfied families and healthcare professionals are with a telemedicine programme. METHODOLOGY: This is a qualitative study of narrative design. Ten interviews were conducted with family members and professionals who had been using telemedicine for a year. Sampling was intentional and a discourse and content analysis was conducted. RESULTS: Six thematic categories emerged from the analysis of the interviews: degree of satisfaction; usefulness; benefits according to patient needs and attention; technical and human difficulties; and implantation of the system and proposals for improvement. CONCLUSIONS: The study shows that telemedicine is a very useful complementary tool for healthcare professionals in a palliative care context. It is necessary to take into account the perception and needs of both families and healthcare professionals with regard to this tool since it can improve patient care.

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Understanding what matters to people with Parkinson's and their family is essential to derive relevant clinical outcome measures and guide clinical care. The purpose of this study was to explore what is important to people with Parkinson's disease vs. family over time. A qualitative content-analysis of online survey data collected by Parkinson's UK was conducted to identify types and frequencies of important symptoms and impacts of Parkinson's for people with the disease vs. family of people with Parkinson's. Independent T-tests were used to identify significance of between group differences for patients vs. family at < 2, 2-5, 6-10, 11-20, > 20-year durations. ANOVA was used to assess for within group differences by disease duration. We found that symptom priority changed significantly over time with longer disease duration. Tremor was reported less often later on, whereas mobility, dyskinesias, gait and speech/communication symptoms gained priority. In general, patients identified movement-related symptoms (e.g., walking, bradykinesia) as the most bothersome at all durations while family more strongly prioritized the physical and psychosocial impacts of disease (e.g., mobility, safety, interpersonal interactions, independence, and family impact). We conclude that important differences exist between family and patient perspectives of what matters and change over time with longer duration of disease.

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BACKGROUND: Family members are often affected by the long-term consequences of traumatic brain injury, but are rarely involved in rehabilitation programs in the chronic phase. We thus do not know what family members´ main concerns are in the chronic phase, what factors are associated with perceived caregiver burden, and whether family members´ health and functioning improves due to rehabilitation efforts received by the patients. This study explored family-members` functioning, predictors of caregiver burden and effect for family members of a goal-oriented intervention in the chronic phase of traumatic brain injury. METHODS: Family members self-reported data measuring their caregiver burden, depression, general health, loneliness, and their evaluation of patient competency in everyday life, patient awareness levels, main problem areas (target outcomes) for the patient related to the brain injury, and demographic data were collected. Regression models were used to explore predictors of caregiver burden, and mixed models analysis was used to explore treatment effects. RESULTS: In total, 73 family members were included, 39 in the intervention group and 34 in the control group. Moderate to high caregiver burden was reported by 40% of family members, and 16% experienced clinical levels of depression. Family member loneliness and their evaluation of the patient`s level of functional competency explained 57% of the variability in caregiver burden. There were no treatment-related changes in caregiver burden, family member depression or general health. At T2 there was however a significant reduction in how family members rated severity of target outcomes that the family members had nominated at baseline (-0.38, 95% CI, -0.75 to -0.02, p = 0.04), but not for the target outcomes the patients had nominated. CONCLUSIONS: A significant proportion of family members to patients in the chronic phase of TBI continue to experience challenging caregiver burden and emotional symptoms. Both family member-related and patient factors contribute to caregiver burden. Interventions targeting patient complaints do not automatically alleviate family members´ burden. It is important to address social support for family members early after injury, and there is a need for more interventions specifically targeting family members´ needs. TRIAL REGISTRATION: The trial was registered at ClinicalTrials.gov, NCT03545594 on the 4th of June 2018.

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BACKGROUND: Nurses, as the main healthcare workers during the COVID-19 pandemic, were at high risk of contracting the disease. Family caregivers played a vital role in the support and recovery of patients with COVID-19. The experiences of family caregivers of nurses are very important due to the nature of their job. However, little information is available in this field. To this end, the present study aimed to explore the experiences of family caregivers of nurses who recovered from COVID-19. METHODS: This descriptive qualitative study was conducted in one of the hospitals in southeastern Iran in 2022. The participants were 12 family caregivers of nurses who recovered from COVID-19 and were selected through purposive sampling. The data were collected through semi-structured interviews and analyzed using conventional content analysis. The Consolidated Criteria for Reporting Qualitative research checklist was used to report the findings. RESULTS: The analysis of the data revealed psychosocial consequences as main theme, three categories and nine subcategories including negative emotions and attitudes (fear of deterioration/death, fear of frequent infection, fear of transmitting infection to others, despair of recovery, Changing attitudes toward the nursing profession), caregiver burden (role conflict, economic pressure) and lack of support, ineffective interactions and isolation (Lack of support from nursing managers and colleagues, ineffective interactions and isolation). CONCLUSION: Like other caregivers, family caregivers of nurses recovered from COVID-19 experienced psychosocial consequences and a heavy burden of responsibility. However, what differentiates our findings from the results reported in previous studies is the change in caregivers' attitudes toward nursing and regret for their family members being nurses. The lack of support from medical staff and managers for nurses, the condition of nurses frequently contracting COVID-19 due to the nature of their profession, and the fear of transmitting the infection to others due to contact with COVID-19 patients in the workplace expose these caregivers to additional stress and many risks. Thus, these caregivers need more attention and support in similar situations; an issue that seems to have been neglected during the COVID-19 pandemic.