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Abstract: Informal caregivers of patients with cancer are known to experience extensive burdens, whereas this issue remains unresolved in the setting of hematological malignancies. Yet, these diseases are characterized by a prolonged course, numerous relapses, and implementation of multiline therapy, administered in outpatient facilities. This study aimed to assess the factors contributing to burden and depressive symptoms in informal caregivers of patients with hematological malignancies, while concentrating on the role of medical visits. The study population comprised patients and their caregivers, recruited at the Rambam Hematology Ambulatory Unit. Participants completed validated questionnaires, including the Center for Epidemiologic Studies Depression Scale and the Zarit Caregiver Burden Interview. The cohort (n = 185) included 115 patients (average age, 62.8 ± 14.5 years; 54 males) and 70 caregivers. Among caregivers, 80% reported high psychological burden, and 50% reported significant depressive symptoms. The burden was higher if caregivers were females and if patients were less educated, less healthy, and more depressed. The caregiver burden and depressive symptoms were significantly linked, and the medical visit frequency predicted the level of both. The caregiver burden fully mediated the link between the independent variables of self-rated health and medical visits and the dependent variable of caregiver depressive symptoms. Informal caregivers of ambulatory patients with hemato-oncological malignancies experience high levels of psychological burden and depressive symptoms. This is partly attributed to the medical visit frequency. Hence, a decrease in the number and length of such visits via the implementation of advanced technology could essentially reduce burden and depressive symptoms of caregivers, without compromising patient outcomes., (© 2024 by The American Society of Hematology. Licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0), permitting only noncommercial, nonderivative use with attribution. All other rights reserved.)

Purpose: End-of-life decision-making, particularly relating to withholding life-sustaining treatment (LST), is a complex and emotionally charged process involving healthcare professionals, patients, and caregivers., Methods: This qualitative study explored the decision-making process in South Korea, where cultural norms and ethical considerations influence the dynamics of shared decision-making (SDM). In-depth interviews were conducted with healthcare professionals, patients, and caregivers using a grounded theory approach to elucidate the themes and processes underlying SDM for LST. This study used the "6C" framework, which could reflect the intricacies of the SDM process., Results: The results suggest that healthcare professionals face emotional challenges and an ethical dilemma in disclosing prognoses and discussing LST withholding, often deferring such discussions until the condition of patients worsens. Cultural factors, such as collectivist values and societal taboos surrounding death, influence decision-making dynamics, highlighting the need for tailored interventions and cultural competence in healthcare settings., Conclusion: The proposed "6C" framework provides insights into addressing current challenges in SDM and emphasizes the importance of cultural norms and ethical obligations in end-of-life decision-making. Further research is warranted to examine the SDM process in diverse cultural contexts and develop interventions to enhance patient and family involvement in the decision-making process for LST., Competing Interests: Declarations Institutional review board statement This qualitative study’s ethical approval was obtained from Institutional Review Boards: National Evidence-based Health Care Collaborating Agency (No.19–005-7) and Dongguk University Ilsan Hospital (IRB# DUIH 2019–03-004). Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: When there is limited access to primary care or end-of-life services for patients with chronic diseases, caregivers often need to bring their loved ones to emergency departments (EDs) to solve or control distressing physical and psychosocial-spiritual problems. There is limited literature about the experiences of primary caregivers of patients with nononcologic chronic diseases who are at the end of life and are evaluated in EDs in Latin America., Methods: We conducted in-depth interviews with primary caregivers of adult patients with advanced and terminal chronic nononcologic diseases who were evaluated in the ED of a hospital in Lima, Peru. This qualitative study employed a phenomenological approach. Themes, categories, codes, and quotes were analyzed using ATLAS.ti 9.1.4., Results: Twelve primary caregivers, aged 38 to 76 years old, mostly female immediate family members (daughter or wife), participated. They described their experiences in the ED, including feelings of despair and anguish due to prolonged waiting times, insufficient resources, incomplete information regarding the patient's problems, and "insensitive" treatment by the staff. Some also expressed gratitude for "saving patient's lives." They also experienced deficiencies in home care follow-up and patient transfers, which worsened during the COVID-19 pandemic; many times they felt that "they were ignored." When caring for patients at home, caregivers felt sad, helpless, and frustrated as they observed patients' progressive deterioration. As patients approached death, caregivers expressed that they tried to "give them all the love" and to have them present for as long as possible, although at the same time caregivers did not want patients to continue to suffer and hoped for "a better place" after this life. Caregivers found their faith to be a source of strength as they continued to care for and be with their loved one until the end., Conclusion: Caregivers reported "traumatic" and "shocking" experiences during ED care, as well as conflict between wanting the patient's suffering to end and wanting to prolong their lives. They also expressed feelings of gratitude, resignation, love, faith, and hope., Competing Interests: Declarations Ethics approval and consent to participate The research was conducted with the approval of the Ethics Committee of Rebagliati Hospital (Note 206-CE-GHNERM-GRPR-ESSALUD-2020). All Participants signed an informed consent document, in this study there was not any participant below the age of 16. All methods were performed in accordance with the relevant guidelines and regulations (Declaration of Helsinki). Consent to publish Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: People post-hip fracture have reported experiences of fragmented care and poor discharge planning, therefore improvements in patient flow are required. This study reports the challenges people face during the discharge process and offers potential solutions for improving the transition from hospital to home from the perspectives of patients, carers, and health professionals., Methods: This was a qualitative study embedded within a multi-centre, feasibility randomised controlled trial (HIP HELPER). We undertook semi-structured interviews with 10 patient-carer dyads (10 people with hip fracture; 10 unpaid carers) and eight health professionals (four physiotherapists, two occupational therapists, one nurse and one physiotherapy researcher) between November 2021 and March 2022. Data were analysed using the principles of Framework Analysis., Results: Participants identified challenges in the transition from hospital to home post-hip fracture surgery: ineffective communication, disjointed systems, untimely services and 'it's more than just the hip'. Possible solutions and insights to facilitate this transition included the need for reassurance, collaborative planning, and individualisation., Conclusion: The transition from hospital to home following hip fracture surgery can be a challenging experience for patients, and for friends and family who support them as carers, making them feel vulnerable, frustrated and uncertain. Enabling a coordinated, collaborative approach to discharge planning and early recovery provision is considered a positive approach to improving NHS care., Trial Registration: ISRCTN13270387. Registered 29th October 2020., Competing Interests: Declarations Ethics approval and consent to participate North East—Newcastle & North Tyneside 1 Research Ethics Committee (20/NE/0213) Date: 14 October 2020. Written informed consent was obtained from all participants. Consent for publication Not required. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: Ethical decision making is a complex issue because it strongly depends on the religion, beliefs, traditional laws and moral views of each society. The purpose of this study was to explore the experience of Iranian family caregivers of end stage cancer patients about ethical decision making., Methods: This qualitative study is based on van Manen's method of hermeneutic phenomenology. In-depth interviews were carried out to collect data. Participants were 12 caregiver. Audiotapes were transcribed and analyzed for common themes that represented the participants' experiences. Trustworthiness of the findings was established using the Lincoln and Guba's criteria., Results: Three themes reflected the essence of caregivers' lived experience including; fluctuating between hope and despair, wandering dilemma, and ethical decision making. Each of these themes consisted of several subthemes., Conclusion: The present study revealed that, the caregivers of terminally ill cancer patients need different information about prognosis and end of life decision making process. Our perception of how families negotiate ethical issues in their decision-making is still developing. Opportunities should be created to empowering caregivers to talk about their uncertainties and concerns., Competing Interests: Declarations Ethics approval and consent to participate To comply with ethical considerations, after explaining the objectives and method of the study to the participants, informed written consent was obtained from them. It should be noted that the principles of the Declaration of Helsinki, including free entry into the research project, no harm to the participants, preservation of the right to withdraw from the study, and confidentiality of information have been observed in this research. In addition, the researchers committed themselves to adhere to the principles of the Committee on Publication Ethics (COPE) established for the publication of the results. This study was approved by the ethics committee of Tehran University of Medical Sciences with the ethics code IR.TUMS.VCR.REC.1396.4580. Consent for publication Not required. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Purpose: Financial toxicity, cancer-treatment-related financial harm, is associated with expensive treatments like immunotherapy. The purpose of this study was to explore financial toxicity among advanced cancer patients receiving immunotherapies and their caregivers and, secondarily, to study how recent inflation and the COVID-19 pandemic impacted these experiences., Methods: Advanced cancer patients receiving immunotherapies and their caregivers were recruited to participate in semi-structured interviews about supportive care needs from 2022 to 2023. The Comprehensive Score for Financial Toxicity was collected. Guided by Jones et al.'s cancer financial toxicity model, the content analysis was conducted by two trained coders using NVIVO R1., Results: Sixteen patients and 10 caregivers (including 7 dyads) across 5 states participated in interviews in 2022-2023. Participants averaged 63.43 years (SD = 12.75), and patients received an average of 14.6 months of immunotherapy (SD = 9.415). The majority lived in non-metropolitan areas (67%) and were white (95%). Three theory-driven themes were developed: (1) Sources of Financial Toxicity, (2) Buffers of Financial Toxicity, and (3) Consequences of Financial Toxicity. Inflation was added to financial toxicity for non-metropolitan dwelling participants due to increased prices of gas and accommodation. Social support systems buffered the impact of financial toxicity. Material and psychological impacts of financial toxicity disproportionately affected younger and privately insured participants., Conclusion: While immunotherapy patients face high medical costs of treatment, the burdens of accessing treatment for people living at a distance from the cancer center can exacerbate financial toxicity. Clinicians and researchers should also consider external financial pressures such as national economic impacts that compound the financial toxicity of treatment., Competing Interests: Declarations Ethics approval Approval of this study was granted by the University of Utah’s Institutional Review Board (IRB: 00146759, 10/21/2021). Consent to participate Informed consent was obtained from all individual participants included in the study. Competing interests Dr. Tay has received a Flatiron Health Equity Award for unrelated work. The award was to the institution and not to the author and does not pose a conflict of interest., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background: This study aims to validate a hypothesized model of the relationships between optimism, resilience, coping, parenting stress, perceived social support, and anxiety, as well as their influencing factors and consequences among caregivers of children diagnosed with cleft lip and/or palate (CL/P)., Methods: A hypothesized model was proposed based on diathesis-stress theoretical model and existing literature. A convenience sample of two CL/P treatment centers in China was collected between April 2019 and July 2020. Various well-validated instruments were used to collect 248 valid data points. Descriptive statistics and correlations were computed to assess model fitness and path analysis was performed to investigate direct and indirect effects., Results: The results revealed that the average level of anxiety among caregivers of children suffering from CL/P was 3.00 (0.00,6.00). The fitness of the modified path model was evaluated using various measures, including χ2/df = 1.806, GFI = 0.989, RFI = 0.916, IFI = 0.990, CFI = 0.989, TLI = 0.960, RMSEA = 0.0570. Parenting stress had the greatest direct associated with anxiety, followed by perceived social support. Moreover, indirect relations to anxiety were observed for optimism, resilience, and coping, which were mediated through perceived social support and parenting stress., Conclusion: In summary, this work suggests that both parenting stress and perceived social support in caregivers of children suffering from CL/P are associated with anxiety. Therefore, developing effective intervention approaches targeting key factors might potentially instrumental to alleviate anxiety., Competing Interests: Declarations Ethics approval and consent to participate The Ethical Committee of China Medical University granted ethical approval to this study (No.2018–27). The completion of this study was voluntary and implied consent was communicated to all participants. They were also well informed about their right to withdraw from the study. Participants’ anonymity was maintained throughout the study. Participants provided their informed consent prior to responding to the survey questions. All methods were carried out in accordance with relevant guidelines and regulations. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Objectives: In palliative care, it is important for family caregivers to spend time with and care for the patient, and to receive (in)formal support. These elements were compromised during the Covid-19-pandemic. This study investigates what family caregivers of non-Covid-19-patients in the palliative phase shared online during the first wave of the pandemic, and what their communicative intentions were with posting online., Methods: To investigate what family caregivers shared online, a reflexive thematic analysis was performed on online newspaper articles and posts on Twitter, Facebook and online forums. To investigate family caregivers' communicative intentions with social media posts, content analysis was conducted guided by Speech Act Theory., Results: In total, 412 posts and articles were included, the majority being Tweets (86.7%). Four themes were constructed: 1) 'Being out of touch', 2) 'Fear, worries and uncertainties, 3) 'Disbelief, anger and resistance', and 4) 'Understanding, acceptance and gratitude'. Family caregivers felt overwhelmed with anger, sadness and anxiety, yet some expressing milder or positive attitudes towards the new circumstances. Family caregivers mostly posted online to share their personal experiences and emotions, and to express their opinions about the restrictions., Conclusions: The pandemic had distinct implications for family caregivers of non-Covid-19-patients in the palliative phase. In future similar circumstances, restrictions should be tailored to individual conditions and interventions should be in place to facilitate contact between patients, family caregivers and healthcare professionals and to support family caregivers., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Hoffstädt et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: The symptomatic management of Parkinson's disease (PD) relies heavily on medications, which increase in complexity as the disease progresses., Objectives: To describe (i) the extent, range, and nature of research describing the experience and challenges people with PD and their carers have with their medicines for symptomatic treatment, and (ii) any interventions that have been reported in a community setting that address medicine-related challenges experienced by people with PD., Methods: The scoping review searched electronic databases (EMBASE, PubMed, and CINAHL). The studies included were full-text articles in English only, including conference abstracts that focussed on patients with PD or their carers and discussed medicines in the primary care setting, even where this was not the primary focus., Results: Thirty-nine papers were taken forward for data extraction. Twenty described patient experience and challenges. Although none were explicitly focussed on medications, they did highlight challenges including the work of taking multiple medications and a desire for non-oral formulations. Nineteen described or tested interventions to support people with PD with their medication including community pharmacist-led reviews, medication compliance aids, and the use of text message reminders. These were all small-scale feasibility and pilot studies, and none were grounded in a methodological framework. Positive outcomes were reported against various scales, but no evidence of scaling up any of the interventions was found., Conclusion: There is very little published research surrounding the challenges people with PD have with their medicines. The published research that does exist alludes to challenges with medicines taking in people with PD but identifies a gap in the detail and understanding. Further work is required to improve our understanding and allow the development of sustainable interventions that support people with PD and their carers., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Royal Pharmaceutical Society.)

Background: New treatment approaches are urgently needed to improve the prognosis of children and adolescents with anorexia nervosa (AN). Recently, the feasibility of multidisciplinary home treatment that strongly involves the patients' parents/caregivers has been investigated. However, no RCT has yet been performed to test the efficacy and safety of this approach compared to standard treatment approaches, such as inpatient treatment., Methods: In this multicenter randomized-controlled trial, home treatment for children and adolescents with AN aged 12 to 18 years is established at 5 major treatment centers for AN in Germany. Approximately 240 patients who are admitted to the hospital for AN will be included in the trial. After a short inpatient somatic stabilization phase (5-8 weeks), patients are randomized to receive either treatment as usual (TAU), in the form of continued inpatient or day patient treatment, or the newly developed home treatment (HoT) (n = 82/arm, n = 164 in total). There are three assessments throughout treatment (admission, randomization, and discharge), as well as follow-up assessments at 9 and 12 months after admission. The BMI at 12 months after admission (primary outcome) is compared between groups (adjusted for premorbid BMI and admission BMI); secondary outcomes include eating disorder and general psychopathology, the number and duration of psychiatric rehospitalizations, quality of life, motivation for treatment and treatment satisfaction. Other secondary outcomes include the primary caregivers' burden and skills in handling the child's illness and direct treatment costs. Statistical analysis will be based on intention-to-treat principles, using mixed models for repeated measures. (Serious) adverse events are assessed throughout treatment. In addition, the feasibility and implementation of HoT as well as the satisfaction and workload of the members of the multidisciplinary treatment teams in both arms will be assessed., Discussion: In the case of a positive evaluation, HoT can be considered an effective treatment method to replace or complete established treatment methods, such as IP, for treating AN in children and adolescents. The home treatment setting might shorten inpatient stays in this patient group, increase treatment satisfaction, and help to reduce the risk of rehospitalization, which is associated with a better outcome in this vulnerable patient group., Trial Registration: The trial was registered with the German Clinical Trial Register (DRKS) under the ID DRKS00025925 on November 26, 2021 (prospectively registered): https://drks.de/search/de/trial/DRKS00025925 ., Competing Interests: Declarations Ethics approval and consent to participate Ethics approval was granted via a coordinated procedure lead by the Ethic board of the University Hospital RWTH Aachen (reference number for all centers: EK 323/21) for all ethics committees of the involved clinical centers: the Ethic boards of the University Hospital RWTH Aachen (reference: 323/21), the University Hospital Muenster (local registration number: 2021–572-b-S), the University Hospital Ruhr-University Bochum (local registration number: 21–7367-BR), and of the North Rhine State Chamber of Physicians (ÄkNo) (for LVR Hospital Viersen and LVR Hospital Bonn, local reference number: 2021346). Written informed consent is obtained from all young patients and their parents/legal guardians. The study is undertaken in accordance with the Declaration of Helsinki, the ICH E6 Guidelines for Good Clinical Practice (GCP), local rules, regulations, and applicable requirements with independent data management. Consent for publication Not applicable—no identifying images or other personal or clinical details of participants are presented here or will be presented in reports of the trial results. The participant information materials and informed consent form are available from the corresponding author on request. Competing interests Tanja Legenbauer: Royalties by various publishers such as Hogrefe, Springer, and Kohlhammer for treatment manuals on eating disorders and body image disorder, research grants from the German Ministry for Research and Education.Beate Herpertz-Dahlmann: Research grants from the German Research Society, the German Ministry for Research and Education, EU/ERA NET and the Gemeinsamer Bundesausschuss (federal joint committee), author’s honorary from Kohlhammer publisher, speaker’s honorary from Infectopharm and Editor-in-Chief honorary from Wiley.The other authors declare that they have no competing interests., (© 2024. The Author(s).)

Background: In Ghana, nearly one in four (25%) of the population are sickle cell disease carriers. Furthermore, 2% of all babies born (20 for every 1000 live births) has sickle cell disease. However, little is known about how parents negotiate the financial challenges facing parents of a child with sickle cell disease. This study explores the financial difficulties of parents and children living with sickle cell disease., Methods: The study adopted a qualitative approach. Twenty-seven parents were purposively selected from a sickle cell clinic in Accra, Ghana. Data collection was through an in-depth, face-to-face interview, using an interview guide based on the research objectives, and analyzed using thematic analysis., Result: The findings showed that parents faced multiple financial difficulties (both direct and indirect) as they met the direct cost of medications, routine laboratory investigations, and hospital admissions. The National Health Insurance scheme does not wholly cover these costs. Families also describe more indirect costs, such as those associated with maintaining their child's well-being alongside those connected to their caring responsibilities, including the impact of giving up work and reducing working hours. Findings highlight the most pressing challenge, including the lack of access to financial support and a more general lack of understanding of the difficulties they faced on the part of policymakers., Conclusion: Supporting sickle cell parents' financial needs would improve their emotional and social well-being, enabling them to be more effective family carers., Competing Interests: Declarations Ethics approval and consent to participate All methods were carried out in accordance with relevant guidelines and regulations.Ethics approval was gained from the Departmental Ethics and Governance Committee at the University of York and the Institutional Review Board of the Teaching Hospital where the study took place in Accra, Ghana (Ref: 37MH – IRB IPN 007/2014).To participate in the study, informed consent from all participants and their legal guardian for study participation was gained. Consent for publication Not applicable to this study. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: Adult caregiving can be demanding and stressful, especially when the caregiver is employed. As the age of the U.S. population and workforce increases, more adults are providing care to aging family members., Objective: To understand the prevalence and aspects of the caregiving experience and caregiving strain among department of medicine faculty members, and to gauge their awareness and utilization of caregiving resources., Design: We used a cross-sectional survey design. A questionnaire survey was developed and launched in Redcap in October, 2022, and an invitation was emailed followed by two reminders to all full-time and part-time faculty members (N = 1053) in our department of medicine., Main Measures: Faculty demographics, caregiver status, caregiving details, degree of mental or emotional strain, and knowledge of and use of employer and external caregiver resources., Key Results: Of the 1053 faculty members who received up to three email survey invitations, 209 (20%) responded of which 76 (36%) were current caregivers and 117 (56%) were non-caregivers. Among the 76 current caregivers, 53 (70%) reported providing care for parents or parent-in-laws and 9 (12%) reported caring for a spouse. One-third of current caregivers reported caring for individuals with Alzheimer's disease or dementia/memory problems. Ninety-five% of current caregivers reported some or a lot of caregiving strain. A wide variation in knowledge of and use of employer and external caregiver resources was reported., Conclusions: Department of medicine faculty who provide adult caregiving report a high prevalence of strain and wide variation in knowledge of and use of employer and external caregiver support services, suggesting opportunity to better understand where gaps exist in providing support for caregivers., Competing Interests: Declarations Ethical approval and consent to participate The Johns Hopkins Medicine Office of Human Subject Research determined that this quality improvement project did not constitute human subjects research (#IRB00317800). Consent for publication The authors consent for publication. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

The implementation of home-care robots is sometimes unsuccessful. This study aimed to explore factors explaining people's willingness to use home-care robots, particularly among care recipients and caregivers. Surveys were conducted in Japan, Ireland, and Finland. The survey questionnaire comprised four categories (familiarity with robots, important points about home-care robots, functions expected from home-care robots, and ethically acceptable uses), with 48 items assessing users' willingness to use home-care robots. The responses from 525 Japanese, 163 Irish, and 170 Finnish respondents were analyzed to identify common and distinct factors influencing their willingness to use these robots. Common factors across the countries included "willingness to participate in research and development," "interest in robot-related news," and "having a positive impression of robots". The distinct factors for each country were: "convenience" in Japan; "notifying family members and support personnel when an unexpected change occurs in an older person" in Ireland; and "design" in Finland. Therefore, developers should determine potential users' willingness to participate in the research and development of home-care robots and consider a system that involves them in the development process., Competing Interests: Declarations Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: In 2020, Malawi had 6.9 million malaria cases and 2551 deaths, mainly in children under five years of age. The 2017-2022 Malawi malaria control strategic plan promoted the consistent use of insecticide-treated nets through free distribution and mass campaigns. Despite widespread availability of the control strategy plan, Chikwawa District continues to suffer from high malaria burden especially among under five children, due to inconsistent insecticide-treated (ITN) net usage. For this reason, this study aimed at exploring caregivers' perceptions on insecticide-treated net utilisation and also find out about its effectiveness among those who consistently use them., Methods: This study used a sequential exploratory mixed methods design. The data used for quantitative analysis was drawn from the population of under-five children's caregivers within the catchment area of Chikwawa district hospital. The sample size was 96 participants, as determined by Cochran's formula. The data collection lasted from December 2023 to April 2024 and included four in-depth interviews and three focus group discussions to address the objectives qualitatively., Results: The study revealed that 91.67% of households used ITNs, with 87.50% using them daily. The significant factors influencing ITN utilisation included the number of nets, user satisfaction, perceived impact, user habits, acquisition method, and usage frequency (all p values < 0.001). Under-five malaria cases were also significant (p = 0.025). The odds of the perceived net impact influencing utilisation were 4.956 times greater. Non-usage was due to heat, quality concerns, limited access, breathing difficulties, health conditions such as asthma, and misconceptions about net treatment., Conclusion: The study revealed a strong belief in insecticide-treated net efficacy. However, some challenges such as access, durability, and misinformation of insecticide-treated nets were discovered. These challenges affected utilisation of insecticide-treated nets in agreement with some literature reviewed. The insights found in this study will help policymakers in addressing health interventions for the reduction of malaria cases in Malawi., Competing Interests: Declarations Ethics approval and consent to participate Permission to conduct this study was obtained from the Parul institute of public health technical review committee, reference number PIPH/FOM/PU/2023–2024/319, and from the Malawi national health sciences research committee (NHSRC), protocol number 24/02/4339, approval number 4339. Clearance was obtained from the Chikwawa district health directorate before the commencement of the study activities. Permission was also sought from local leaders verbally before they entered their villages. Before data collection, informed consent was obtained from each study participant to ensure voluntary participation. All necessary information about the study, including its purpose, risks, and benefits, was explained to the participants. Furthermore, the study participants were told that they had the right to withdraw from the study at any point during the study period. Those participants who agreed to be interviewed were requested to sign or thumbprint the informed consent form. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: The purpose of this study was to identify and describe common views of people with lived experience of mental health challenges - consumers and carers, families and supporters - of what they consider the most important measures to include in health economic evaluations which assess the incremental value of competing options in mental health care., Methods: Participants (n = 111) were people living in the state of Victoria, Australia, who identified as consumers of mental healthcare (n = 38); carers, family members and/or supporters (n = 43); or both (n = 30). Factor analysis based on Q-Methodology was used to identify clusters of people who hold similar viewpoints. Common viewpoints were described in terms of the characteristics of the group, and a qualitative interpretation was conducted on the basis of distinguishing statements and quotes provided in participants' own words., Results: We identified four common views: (1) safety before all else, prioritizing physical, sexual and psychological safety; (2) hope and partnership in processes of care; (3) physical and emotional health and wellbeing; and (4) care access, continuity and partnership with families. Although different priorities were identified for each viewpoint, key priority areas that were common to all views were having an environment in the health service that fosters respect and dignity, and that consumers feel heard and listened to. In sub-group and qualitative analyses, differences were observed regarding the likelihood of consumers and carers holding each of the views, as well as by age group., Conclusions: While some differences were noted between the views of consumers and carers and different age groups, there was also common ground regarding what outcomes are of most importance to measure. Including these measures in evaluation frameworks would provide a way of focussing mental healthcare decisions on the aspects of mental healthcare that are of most value to consumers and carers, thereby addressing an important shortcoming of current approaches to decision-making in mental healthcare., Competing Interests: Declarations Ethics approval and consent to participate All procedures performed in this study were in accordance with the ethical standards of the institutional research committee and with the 1964 Declaration of Helsinki. The study received ethics approval from the University of Melbourne Human Research Ethics Committee (ref. 2023-24566-36658-6). All individual participants provided informed consent prior to completing the survey. Consent for publication Not applicable. Competing interests All authors declare they have no competing interests., (© 2024. The Author(s).)

Background: Family caregivers of people with dementia are a distinct group due to the particularly stressful and time-intensive care situation at home. Despite these challenges, involving them in research is crucial to better understand and address their specific needs. However, little evidence exists regarding a tailored approach for researchers for this group considering their situation at home., Methods: A scoping review will be conducted following the Joanna Briggs Institute methodological guidance, including the databases MEDLINE (PubMed), CINAHL, Scopus (Elsevier), and PsycINFO (EBSCO). The review will include family caregivers of people with dementia, regardless of age, gender, or ethnicity, who have been actively involved in research throughout the research process. Moreover, sources of evidence from any country in both English and German are eligible for inclusion. Sources will be screened by two independent reviewers. Results will be extracted using a tailored charting tool and presented in the final report according to the research questions and objectives., Discussion: Developing a tailored approach to involve family caregivers of people with dementia in research and development has profound importance to both the scientific community and the target group itself., Systematic Review Registration: Open Science Framework https://doi.org/10.17605/OSF.IO/PMZYV ., Competing Interests: Declarations Ethics approval and consent to participate N.A. Consent for publication N.A. Competing interests The authors declare that they have no competing interests., (© 2024. The Author(s).)

Introduction: Parkinson disease (PD), a neurodegenerative disorder that progresses over time, is steadily growing in number and prevalence worldwide. PD in Malaysia is expected to increase five-fold by 2040 from the existing estimate of 20,000 patients in 2018. Treatment program of PD in Malaysia is rather unstructured, and there is no known comprehensive PD family caregiver training program available to date. To ensure the quality of a program, it must be tested for feasibility, effectiveness and sustainability. This paper describes the protocol of a study that evaluates the effectiveness of a structured, comprehensive training program of family caregiver to persons with PD in comparison to usual care., Materials and Methods–study Protocol: A total of 60 pairs of persons with PD of stage II and III, and their primary family caregiver will be recruited and allocated into either an experimental or a control group for 12 weeks of intervention. The experimental group will undergo initial training from multi-disciplinary healthcare providers and will be given a physical module containing weekly tasks that must be practised at home. While the control group will receive a usual care. Both groups will be assessed in terms of physical functions, functional mobility, quality of life (QoL), caregiver burden and knowledge using standardised assessment tools namely Movement Disorder Society-Unified Parkinson's Disease Rating Scale (MDS-UPDRS), Timed Up and Go (TUG) test, Parkinson's Disease Questionnaire (PDQ-39), European Quality of Life five-dimensions (EQ-5D), Malay version of Zarit Burden Interview (MZBI) and Knowledge of Parkinson Disease Questionnaire (KPDQ). In addition, the feasibility and sustainability of the interventions will be evaluated, alongside its cost-effectiveness based on the average and incremental cost effectiveness ratio. All data will be analysed using descriptive and inferential statistics, particularly mixed model ANOVA., Discussion: There is a significant gap in the literature pertaining family caregiver training programs for people with PD. Documented programs are lacking in term of comprehensiveness of content, application approach and the measurement of training outcomes including the program cost-effectiveness. The feasibility and effectiveness of such training program in a Malaysian setting also requires investigation due to differences in living environment, support system and population's perception. This study will assist to fulfil the existing literature gap and demonstrate the potential benefit of caregiver involvement in mediating the care and therapy for PD in the home setting. Optimum knowledge and skills gained through the training are expected to enhance the confidence and ability of the family caregivers and may possibly reduce their perceived caregiving burden., Protocol Registration: The protocol of this study is registered in the Australian-New Zealand Clinical Trial Registry (ANZCTR) with a registration number ACTRN12623000336684., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Mohd Amin et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

A family with a disabled child has major changes and challenges. The difficulties experienced by the whole family are of various natures and relate to emotional, psychological, caring, and financial problems. The aim of the study is to learn about the challenges and involvement of Polish families in caring for a disabled child in the home environment. A cross-sectional pilot study was conducted in a group of 103 parents of disabled children. The proprietary questionnaire and a standardized scale for the Generalized Self-Efficacy Survey (GSES) were used as a research tool. The material for the study was collected online, using Google Forms software, and statistically processed. Emotional contact with a disabled child turned out to be the most difficult aspect of care for almost half of the respondents (42.7%). The vast majority of respondents (75.7%) described the level of difficulty in caring for a disabled child as much higher than the level of difficulty in caring for a healthy child. Most parents (87%) spend between 10 and 20% of their family income on the treatment and rehabilitation of disabled children. A significant relationship was noted between the assessment of the family's economic situation and place of residence (χ 2 P = 27.32; p < 0.0001; Vc 0.51). Parents of children with disabilities who live in rural areas and have less education are less well off financially. The average GSES score was 24.54 and was in 4 sten. The biggest care challenge for parents of disabled children turned out to be emotional contact with the child. The GSES index for parents of children with disabilities is lower than the average values obtained in Polish studies, which translates into worse coping with problems., Competing Interests: Declarations Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: The prevalence of household violence in low- and middle-income countries (LMICs) is high, and exposure to violence has significant adverse effects on both mental health and child development across generations. Evidence-based services to improve parenting practices and reduce household violence in LMICs are scarce, particularly across rural regions of West Africa. This study explored the feasibility, acceptability, and potential benefits of an evidence-based home-visiting intervention to promote early childhood development and reduce household violence-the Family Strengthening Intervention for Early Childhood Development and Violence-Prevention (FSI-ECD + VP)-among vulnerable families in rural regions of Sierra Leone., Methods: Eighty dual-caregiver households in the Makeni region of Sierra Leone were included in the study (N = 160 caregivers; 73% female). Eligibility criteria included having at least one child aged 6-36 months and elevated scores (> 62.5) on the Difficulties in Emotion Regulation Scale (DERS). Community Health Workers (CHWs) employed in the Makeni region completed a 3-week FSI-ECD + VP training. Families were randomized to receive either the FSI-ECD + VP or treatment as usual (TAU). Research assistants blinded to treatment assignment assessed caregiver mental health, caregiver-child interactions, and household violence at baseline, post-intervention, and 3-month follow-up time points., Results: Triangulation of quantitative and qualitative data showed that caregivers, CHWs, and supervisors generally perceived the intervention as beneficial, feasible, and acceptable. Mixed effects models showed that caregivers who received the FSI-ECD + VP had significantly improved caregiver-child relationship outcomes compared to TAU as assessed by the Home Observation for Measurement of the Environment and the Observation of Caregiver-Child Interactions at post-intervention. Preliminary data also suggests that caregivers receiving the FSI-ECD + VP were less likely to have experienced intimate partner physical violence during the post-intervention period, and had lower symptoms of anxiety and depression at 3-month follow-up., Conclusions: FSI-ECD + VP delivery by CHWs in Sierra Leone may be feasible and acceptable; it may also help improve caregiver-child interactions and reduce the likelihood of household violence among vulnerable families with young children. Task-sharing approaches may help increase acceptability and access to evidence-based behavioral interventions that promote early childhood development and violence prevention among families in rural regions of Sierra Leone and other similar settings., Trial Registration: The study is registered in clinicaltrials.gov (NCT03045640; 07/22/2020). This study follows the Consort 2010 guidelines for reporting of clinical trials., Competing Interests: Declarations Ethics approval and consent to participate This study received ethical approval from the Boston College Institutional Review Board and the Sierra Leone Ethics and Scientific Review Committee. All participants will provide informed consent prior to their enrollment and participation. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: The efforts of early psychosis intervention programmes can be impeded by difficulties in maintaining the engagement of service users. As disengagement is often an autonomous decision made by service users, the main aim of this study was to gain insight into the reasons for service user disengagement through qualitative interviews with the service users themselves, and caregivers as proxies or secondary informants., Methods: Participants recruited for the study were enrolled in the Early Psychosis Intervention Programme in Singapore for at least a year, aged 21 and above, able to communicate in English, and had disengaged for at least three months. The recruitment and interview processes were conducted independently for service user and caregiver participants. Potential participants were invited to a face-to-face semi-structured interview over video call or in-person. Each interview spanned one to two hours, and comprised five phases - icebreaker, exploration of the participant's experience with EPIP before deciding to disengage, discussion of reasons for disengagement, exploration of the post-disengagement experience, and feedback and suggestions for EPIP. Recruitment aimed to conclude after 10-15 participants were interviewed for both service user and caregiver groups, with the expectation that data sufficiency would be reached with no new themes being generated., Results: Ultimately, 12 service user and 12 caregiver participants were recruited. There were six pairs of service user and caregiver dyads, where the caregivers interviewed were caring for service users also enrolled in the study. Valuable qualitative insights were gathered, including the type of disengagement, medication compliance during disengagement, the decision-making process behind disengaging, and circumstances surrounding re-engagement. A total of five categories each with subthemes were identified from the reasons for service user disengagement - individual factors, stigma, progression, treatment factors, and external factors., Conclusions: There is a need to narrow down urgent areas of attention, aligning the study themes with established risk factors so that feasible solutions can be developed and appropriate care models can be adopted, to minimise adverse outcomes related to disengagement. It is important to keep an open mind to understand what personal recovery means to the individual service user, so that treatment goals can be better harmonised., Competing Interests: Declarations Ethics approval and consent to participate This study was approved by the National Health Group’s (NHG) Domain Specific Review Board (DSRB Ref. No.: 2020 − 00857). Written informed consent was obtained from all participants prior to enrolment in the study. All procedures were conducted in accordance with the Declaration of Helsinki. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Introduction: HPV infection is well-recognized as a cause of nearly all cases of cervical cancer. There are currently three prophylactic HPV vaccines; a bivalent (Cervarix), a quadrivalent (Gardasil), and a nonavalent vaccine (Gardasil- 9). With the recent rollout of HPV vaccines in Nigeria, it is imperative to understand potential barriers and facilitators to its uptake., Objectives: The objectives of this study were to evaluate the awareness, perception, and willingness to accept HPV vaccine and explore enablers and barriers to HPV vaccine uptake among adolescents and caregivers., Methods: Four focus group discussions were conducted with adolescents from public and private secondary schools in Plateau, 4 with the parents of adolescents, and one IDI with the head of ANCOPSS. Each FGD had between 8-12 participants. Interviews were recorded and notes were taken. The interviews were transcribed, codes were generated and analysis was conducted using a thematic framework approach with NVIVO version 11 software., Results: Most participants demonstrated inadequate knowledge and poor perception of HPV and the vaccine. Girls were willing to accept the vaccine, while boys saw it as a female problem. Parents had limited knowledge but expressed willingness to allow their children to be vaccinated. The fear of side effects, poor vaccine quality, and lack of parental approval were major barriers expressed by the girls while myths and misconceptions regarding the vaccine interference with fertility and as a means of population control were significant barriers on the parts of the parents., Conclusion: Low awareness and poor perception of HPV vaccine exist among adolescents and caregivers. Long-term individual and community-level interventions are needed to provide accurate information address knowledge gaps and promote inclusive access., Competing Interests: The Authors declare that no competing interest exists, (Copyright © 2024 by West African Journal of Medicine.)

Introduction: Unintentional home injuries (UHI) pose an enormous danger to a child's well-being; therefore, understanding the variations in caregiver approaches across different settings is invaluable for targeted prevention strategies. The study aimed to assess the knowledge, perception, and practice of caregivers on UHI in children under five years of age., Methods: The comparative cross-sectional study design with a multistage random sampling technique was utilized to select 494 caregiver/child pairs, proportionate to size, from selected communities in both rural and urban areas of Plateau State. Quantitative data collected via ODK underwent cleaning and entry into SPSS version 26. The study objectives were assessed using SPSS for frequency and proportions. Statistical analyses included descriptive statistics, chi-square test and logistic regression, with a significance level set at p ≤0.05., Results: The youth age group represented 68.8% of urban caregivers compared to 57.1% of rural caregivers. In rural settings, 19.0% of respondents had low knowledge (<50th percentile), while in urban areas, only 2.8% fell into this category. Adequate knowledge (>50th percentile) was observed in 81.0% of rural respondents and 97.2% of urban respondents. The likelihood of UHI occurrence was approximately 8 times higher [8.057 (3.563 - 18.219) (p<0.001)] in rural areas with poor knowledge compared to urban areas with adequate knowledge. However, there was a statistically significant difference in UHI prevalence based on caregivers' knowledge was found between rural and urban respondents (p<0.001). When examining UHI cases, in rural areas, 98.5% of those with adequate knowledge experienced UHI, contrasting with 1.5% with poor knowledge. In urban areas, 71.2% of UHI cases occurred among those with adequate knowledge, while 28.8% had poor knowledge. Rural respondents demonstrated a higher proportion (53.4%) of poor fate belief compared to urban areas (40.9%), while good fate belief was lower among rural respondents (46.6%) compared to urban respondents (59.1%). In urban areas, the prevalence of UHI did not significantly differ based on caregivers' practices (p=0.827). In rural UHI cases, 22.0% had poor practices, and 78.0% had good practices, with no significant difference based on caregivers' practices (p=0.119). There was a significant difference in UHI based on parental/caregivers' practices (p=0.006), with 25.9% of rural and 15.8% of urban respondents having poor practices, and 74.1% of rural and 84.2% of urban respondents having good practices., Conclusion: The study concludes that there are significant knowledge gaps among caregivers regarding unintentional home injuries (UHI) between rural and urban areas. Despite lower knowledge levels in rural settings, UHI rates are higher, underscoring the importance of knowledge in injury prevention. Variations in fate belief, parental protectiveness, and practices further contribute to differences in UHI occurrences., Competing Interests: The Authors declare that no competing interest exists, (Copyright © 2024 by West African Journal of Medicine.)

Introduction: The effectiveness of Brief Psycho-education (BPE) is well-established among caregivers of adults with mental disorders, this is however not the case among caregivers of children and adolescents with Intellectual disability (ID) due to the dearth of data occasioned by relatively few studies in the area., Objective: This study assessed the impact of BPE on Caregiver burden (CB) among caregivers of children and adolescents with ID., Methodology: A single-blind RCT was conducted in the Child and Adolescent Clinic in the Psychiatric Hospital, Benin City. Randomization was done via a central computer system and group allocation via a third party. Family caregivers (n=58) were randomly assigned to intervention (n=29) and control (n=29) groups. Intervention and follow-up periods were 4 weeks each. Weekly BPE in addition to routine care (RC) was administered to the intervention group. The primary analysis was based on 58 participants (n=29; n=29) comparing CB in the two groups at the 4th week and 8th week post-intervention., Results: Mean follow-up post-intervention showed a significant reduction in overall CB in the intervention group between 0 and 4th week (mean deviation 6.76, p=0.03) as well as, 4th and 8th week (mean deviation 12.35, p<0.001). For the CB dimensions, mean follow-up scores post-intervention reached a significant reduction in the 8th week for financial/physical strain factor (mean deviation 1.8, p=0.02), time/dependence strain factor (mean deviation 2.4, p<0.001), emotional strain factor (mean deviation 1.3, p<0001), uncertainty factor (mean deviation 1.45, p=0.004) and self-criticism factor (mean deviation 1.19, p<0.001)., Conclusion: BPE was superior to routine care in reducing CB among caregivers of Children and Adolescents with Intellectual disability., Competing Interests: The Authors declare that no competing interest exists, (Copyright © 2024 by West African Journal of Medicine.)

This study assessed the influence of sociodemographic conditions, oral hygiene habits, and the socio-psychological need for orthodontic treatment on the emotions of caregivers of children with and without autism spectrum disorder (ASD). We conducted a comparative cross-sectional study with families of individuals aged 6 to 14 years at a reference center for neurodevelopmental disorders and two dental school clinics in northeastern Brazil. Caregiver emotions were assessed using the 'Parental Emotions' domain of the Family Impact Scale (FIS). We analyzed sociodemographic variables, oral hygiene habits, and sociopsychological need for orthodontic treatment using the esthetic component of the Index of Orthodontic Treatment Need (IOTN). We used descriptive and hierarchical Poisson regression analyses with robust variance (α = 5%). The study included 144 families evenly distributed across the groups. The caregiver group with ASD demonstrated a higher total score for parental emotions (p < 0.001). Factors associated with this factor included caregiver responsible for brushing (PR = 1.34; 95%CI: 1.12-1.59), mandatory need for orthodontic treatment (PR = 1.25; 95%CI: 1.07-1.46), and caregivers' education up to 8 years (PR = 1.45; 95%CI: 1.02-2.07). Caregivers with lower income showed a lower prevalence of parental emotions (PR = 0.57; 95%CI: 0.35-0.93). Caregivers of children with ASD exhibited a higher emotional burden. Factors associated with parental emotions included responsibility for tooth brushing attributed to caregivers, sociopsychological need for orthodontic treatment, and family income.

Objective: To examine and synthesize the evidence of experiences and perspectives on the specific context of informal post-care and the existing support network., Method: This is a qualitative systematic review with metasynthesis, according to the framework of the JBI, carried out in the CINAHL, LILACS, MEDLINE, BVS and PsycINFO databases, with no time limit. The articles were evaluated using the JBI Qualitative Data Extraction Tool. A total of 1,236 articles was identified, of which 18 were selected and 7 were analyzed. The level of evidence found was moderate., Results: The experiences and perspectives of the informal post-caregiver reveal the need for support, namely: in personal development - attribution of meaning, in self-care perspectives and in identity reconstruction; in managing the impact of the legacy of caring - discontinuity of support in the trajectory of caring, financial vulnerability, and the impact on mental health; formal and informal resources for the future - projection of the future, structured services and family and community support., Conclusion: Post-caregivers' perception of their support network is that their individual and interpersonal needs are not identified, and that formal and informal services are not articulated.

Background: Many patients with enterostomy and their family caregivers experience severe anxiety and fatigue, which affects their participation in normal social activities and family life, resulting in impaired social function. The purpose of this study was to understand the status of social function of patients with enterostomy and their family caregivers;at the same time to analyze the subjective and objective effects of anxiety and fatigue on their social functions., Methods: The self-made general information questionnaire, WHO Social Disability rating Scale, Miao Yu's Multidimensional Fatigue Scale-20 and Zung et al. 's Self-rating Anxiety Scale were used to investigate the general situation, social function, fatigue and anxiety of enterostomy patients and their family caregivers who came to the hospital for treatment from March 28, 2023 to November 30, 2023. SPSS27.0 was used to complete the statistical analysis of the data, and AMOS26.0 was used to establish the structural equation model to complete the subject and object effect analysis., Results: A total of 260 pairs of enterostomy patients and their family caregivers were included in this study. The social function scores of enterostomy patients and their family caregivers were (8.80±3.44) and (6.44±3.60). The anxiety scores were (37.81±7.60) and (34.73±7.50). The fatigue scores were (63.35±12.80) and (51.21±12.38).The results of the subject-object effect analysis reported the subject effect: the anxiety of patients with enterostomy had a significant positive impact on the degree of social dysfunction (β = 0.154, P = 0.015); The fatigue of patients with enterostomy had a significant positive effect on the degree of social dysfunction (β = 0.132, P = 0.034). The anxiety of family caregivers had a significant positive effect on the degree of social dysfunction (β = 0.161, P = 0.023). The fatigue of family caregivers had a significant positive effect on the degree of social dysfunction (β = 0.201, P = 0.005). In terms of object effects: only the fatigue of family caregivers had a significant positive impact on the degree of social dysfunction of enterostomy patients (β = 0.224, P < 0.001), and other ways had no object effects., Conclusion: Patients with enterostomy and their family caregivers have serious social function defects. Clinical medical staff should take care of them as a whole in order to better return to family and society after surgery., Competing Interests: NO authors have competing interests., (Copyright: © 2024 Fan et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Health systems need tools to assess patient's experience of service, but existing tools lack reliability and validity assessment. Our aim is to investigate the factor structure, reliability, validity, item parameters and interpretability of the parent version of the Experience of Service Questionnaire (ESQ) for practical use in Greece., Methods: A total of 265 caregivers that were using mental health services in Greece participated in this study as part of the Nationwide cross-sectional survey from the Child and Adolescent Mental Health Initiative (CAMHI). Confirmatory Factor Analysis was used to test factor structure. Reliability of all models were measured with omega coefficients. Tobit regression analysis was used to test for convergent and discriminant validity with specifically designed questions. Item parameters were assessed via Item Response Theory. Interpretability was assessed by means of IRT-based scores., Results: We found that ESQ is best represented and scored as a unidimensional construct, given potential subscales would not have enough reliability apart from a general factor. Convergent and discriminant validity was demonstrated, as caregivers who perceived that their child benefited from the received mental health care had 6.50 higher summed scores (SMD = 1.14, p < 0.001); while those who believed that their child needed additional help had 5.08 lower summed scores on the ESQ (SMD = -0.89, p < 0.001). Average z-scores provided five meaningful categories of services, in terms of user satisfaction, compared to the national average., Conclusions: Our study presents evidence for the reliability and validity of the ESQ and provides recommendations for its practical use in Greece. ESQ can be used to measure experience of service and might help drive improvements in service delivery in the Greek mental health sector., (© 2024. The Author(s).)

Unpaid/family caregivers provide support critical to older adult hospital-to-home transitions, but lack time and preparation. There is limited evidence regarding important collaboration for caregivers during the transition. The objective was to examine caregivers' process of collaborating with others, including other family members, healthcare professionals, and community, social, and professional networks, during older adult hospital-to-home transitions. This study utilized grounded theory methodology. One-on-one interviews were conducted with unpaid/family caregivers of an older adult during a hospital-to-home transition. Data were analyzed using open, axial, and selective coding. Participants (N = 16) relationship to the older adult included: partners (n = 8), friends (n = 4), children (n = 3), and siblings (n = 1). Most were female (n = 14) and living with the older adult (n = 10). A conceptual model was developed which illustrates participants' process through 3 stages: 1) identifying and learning the caregiver role, 2) collaborating with others to provide care and support to the older adult, while supporting themselves, during the hospital-to-home transition, and 3) supporting the older adult's progress in recovering independence or planning to provide long-term care and support. Participants described multiple approaches to collaborating with others: caring on own, caring in network, caring with healthcare professionals, and caring with social and professional networks. Implications include the need to recognize and promote utilization of care networks, as it may help address negative outcomes associated with caregiving. We also identified opportunities to further leverage caregivers' social/professional networks and increase focus on caregiver needs in healthcare encounters., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Liebzeit et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Purpose: Informal caregivers play a pivotal role in providing support to cancer survivors, yet have reported challenges with communicating with health providers to get all the information they need to provide optimal care. We aimed to adapt and pilot test a brief communication skills training program (COMFORT) to improve caregiver-provider communication in an Australian cancer setting., Methods: Module adaptation was guided by the cultural adaptation model. A working group completed the module and provided feedback for adaptation. The adapted module underwent pilot testing with cancer caregivers to examine module impact on communication confidence, preparedness for caregiving, health literacy, and psychological outcomes. Semi-structured interviews and survey data provided evidence of acceptability, usability, and preliminary efficacy., Results: Eight working group members provided mostly positive feedback on module language, content, and images. Module modifications reflected Australian services and terminology. Nineteen caregivers provided pre-post-pilot data and participated in semi-structured interviews. Following module exposure, repeated measures t-test analyses showed significant improvements in communication confidence, preparedness for caregiving, health literacy, and depressive symptoms (p < 0.05). Survey and interview data supported the acceptability and utility of the program., Conclusion: The findings support the feasibility and preliminary efficacy of the brief module in improving communication confidence, caregiving preparedness, health literacy, and depressive symptoms in Australian cancer caregivers., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objective: The primary aim of this study is to elucidate the spiritual needs encountered by family members who intricately engage in the progression of illness within the palliative care framework, thus assuming the paramount responsibility of caregiving., Methods: This study was approved by the Institutional Review Board and Ethics Committee of the University of Health Sciences İzmir Tepecik Training and Research Hospital (17/01/2022-2022/01-16). The research was designed as a prospective study. It was conducted through face-to-face, interactive interviews with family caregivers of patients admitted to the palliative care unit at Tepecik Training and Research Hospital between April 2022 and December 2022. The interviews were performed using a phenomenological approach and structured in a question-and-answer format. Data from twenty family caregivers were analyzed using thematic analysis. The questions were specifically designed to explore the psychological processes, spirituality, conceptions of God, meaning-making, and coping strategies of the family caregivers., Results: Caregivers experienced various psychological and emotional states progressing through stages of denial, anger, and acceptance. Spirituality emerged as a critical coping mechanism providing strength and meaning amidst caregiving challenges. Caregivers' perceptions of God varied from loving to punitive, influencing their interpretations of suffering and caregiving roles., Conclusion: This study underscores the importance of integrating spiritual support into palliative care practices. Recognizing and addressing caregivers' spiritual needs is crucial for enhancing their well-being and improving the quality of palliative care delivery. Training healthcare professionals in spiritual care and implementing targeted interventions can effectively support family caregivers in their caregiving journey., (© 2024. The Author(s).)

Background: The COVID-19 pandemic disrupted immunisation programs worldwide, reversing gains that had brought vaccine-preventable diseases largely under control. This study explored the impact of COVID-19 on the uptake of routine child immunisation services in South Africa., Methods: We conducted qualitative research using in-depth interviews with 51 purposively selected parents/caregivers of children below the age of five who missed or delayed one or more scheduled immunisation doses in 2020-2022 and with 12 healthcare providers who provided public immunisation services during the pandemic., Results: During the pandemic lockdowns, most caregivers perceived the risk of their child being infected with COVID-19 during a clinic visit as more salient than the risk of missing immunisation doses. Caregivers reported minimal exposure to routine immunisation communication, as well as shortages of routine vaccines for children at public health facilities, healthcare workers experienced anxiety and burnout. There was a post-pandemic shift to more active decision-making about immunisation, which had previously been an almost automatic behaviour, leading some caregivers to delay vaccinating their children. There was also evidence of a "bad vaccine" mental model among some caregivers regarding COVID vaccinations, which could lead to doubts about the safety of routine childhood vaccinations., Discussion: The shift from default to active decision-making highlights a risk that routine immunisation will backslide in future pandemics. Governments should build resilient health systems at all levels and communicate clearly about the benefits and availability of RIs and the safety of vaccinations in general, alongside supply-side interventions., Conclusion: Routine immunisation is widely accepted in South Africa, driven by generational norms and provider recommendations. During the COVID-19 pandemic, many caregivers faced the dilemma of balancing COVID-19 exposure risk with the risk of their child developing a deadly VPD, leading to missed RI visits. This shift to active decision-making highlights a future pandemic risk. Governments should build resilient health systems and focus on understanding and engaging procrastinating and doubtful caregivers. Clear communication about RI benefits and vaccine safety is crucial, as misinformation can lead to distrust in new vaccines., (© 2024. The Author(s).)

Background: Caring for people with mental illness requires a significant investment of personal physical, mental, social, and financial resources, which greatly impact the daily lives of caregivers. The process of providing care is multifaceted and intricate, involving both positive and negative emotional responses. Burden of care is a term used to describe the negative effects of caregivers' burden on their physical, psychological, social, and economic well-being. Therefore, the aim of this systematic review and meta-analysis is to provide an overview of the most recent information available regarding the pooled prevalence of burden of care among people with mental illness in Africa., Methods: In this study, we followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), which is a suitable guideline for reports of systematic reviews and meta-analyses. The PROSPERO protocol number for this review is CRD42024499138. To find publications for the systematic review and meta-analysis, we used PubMed, MEDLINE, EMBASE, Cochrane Library, and Scopus databases. The Joanna Briggs Institute (JBI) for cross-sectional study quality assessment was employed to evaluate the methodological quality of the studies included in this review. The data was extracted in Microsoft Excel, and then it was exported into STATA 11.0 for analysis. A funnel plot and an objective examination of Egger's regression test were used to check for publication bias., Results: We have included 12 studies conducted in African countries with 2156 study participants, of whom 1176 (54.55%) were female individuals. In this meta-analysis, the pooled prevalence of burden of care among caregivers of people with mental illness in Africa was 61.73 (95% CI: 51.25-72.21%). Further, in subgroup analysis regarding the study country, the pooled prevalence of carer burden among caregivers of people with mental illness in Egypt and Nigeria was 79.19% and 55.22%, respectively., Conclusion: This review found a high pooled prevalence of caregiver burden related to mental illness in Africa. To minimize the challenges faced by individuals with mental illnesses, as well as the burden on their caregivers, stakeholders may find these findings useful for addressing prevention, early screening, and management., (© 2024. The Author(s).)

Introduction: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by impairments in communication, social interaction, and repetitive behavior. The declaration of the COVID-19 pandemic in March 2020 resulted in significant changes in daily life due to restrictive measures. This period posed particular challenges for families with children living with autism, given the limitations in medical care and social services., Objective: This study aimed to understand how families with autistic children perceive stress during the pandemic and the coping strategies employed in unexpected situations., Method: A total of 44 families with children with ASD and 300 control families, including 44 control families in a matched subsample, were included in the study. To assess stress and parental coping with COVID-19-related stress, the Responses to Stress Questionnaire (Adult Self-Report RSQ-COVID-19) was utilized., Results: Caregivers of autistic children experienced significantly higher stress levels (p = .027, d = 0.479) during the pandemic, with notable stressors such as limited access to medical care and challenges associated with remote work. Despite expectations, coping strategy differences were not statistically significant., Conclusion: Families and supporters of children with autism naturally encounter various experiences and challenges stemming from their additional needs. Our study's results highlight an accentuation of stress during challenging situations. As these situations may recur in the future, there is a need to design and implement support plans for these families, appropriate intervention programs, and preparations for the utilization of telemedicine tools., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Knedlíková et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Purpose: The purpose of this study was to investigate how the amount of home language use between the primary caregiver and bilingual Spanish- and English-speaking children with hearing loss who use cochlear implants (CIs) versus their bilingual age-matched peers with normal hearing (NH) can impact speech outcomes in the home language., Method: Thirty-four bilingual Spanish- and English-speaking children (17 CI users and 17 with NH) between the ages of 5;3 and 7;9 (years;months) participated in this study. Independent variables were the amount of home language use with the primary caregiver and hearing status, and dependent variables were vowels and consonants correctly produced and occurrence of selected phonological processes. The amount of home language use was ascertained from surveys, and the dependent measures were based on a single-word picture elicitation task., Results: Bilingual children with CIs who are exposed to Spanish for more than 80% of the time via their primary caregiver performed better on Spanish segmental accuracy measures than those who are exposed to Spanish from only 20% to 50% of the time, specifically on vowels (partial η 2 = .31) and consonants (partial η 2 = .025). Children with NH outperformed children with CIs on all accuracy measures in Spanish., Conclusions: Preliminary results suggest the importance of language exposure through interactions with the primary caregiver for speech development in bilingual children. Future studies should investigate strategies to facilitate home language development in bilingual children with CIs, enabling them to reach their full potential.

Background: Although the family plays a pivotal role in older adults' care, there is limited research on how evolving demographic trends affect older adults' support networks and how the trends vary by race. To fill this gap, we examine the influence of shifting family demographics on future care needs for older adults with dementia, emphasizing the unequal health and potential caregiving burdens by race in the United States., Methods: Using demographic models of kinship, we estimate the availability of potential caregivers, and dementia prevalence among one's kin by race, kin type, and the age of a focal person from 2000 to 2060. We introduce an index called the Dementia Dependency Ratio to assess dementia caregiving demands at the population level, taking into account the age and kinship structure of the population., Results: Our findings suggest that Black individuals tend to have more children, grandchildren, and nieces/nephews as they age. However, Black individuals also tend to have more kin with dementia compared to their White counterparts. This elevated prevalence of dementia among Black kinship networks counterbalances the advantage of having more kin as potential caregivers. A further projection analysis suggests that the racial gap in caregiving demand within the kinship network will widen in the next 4 decades if the racial gap in dementia prevalence remains unchanged., Conclusions: These findings emphasize the urgency of reducing racial inequality in dementia prevalence rates and increasing public support for families with extended members affected by dementia. With the shrinkage of nuclear families and population aging in the next few decades, extended family members may undertake more caregiving responsibilities for dementia. We call for a kinship perspective in understanding dementia care in future research., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Background: Respite care provides short-term relief for caregivers. Despite efforts to promote respite use among Black caregivers, little is known if disparities in respite use between Black and White dementia caregivers have decreased over time. We examined a trend nationally to see if more recent efforts may have helped reduce disparities in respite use., Methods: We used a repeated cross-sectional design, with the data from 2015, 2017, and 2021 of the National Health and Aging Trends Study and National Study of Caregiving. Our study sample included 764 (in 2015), 839 (in 2017), and 521 (in 2021) non-Hispanic White and Black caregivers who provided care to older adults living with dementia, representing weighted 5 157 569 (2015), 5 877 997 (2017), and 4 712 144 (2021) dementia caregivers nationally. We conducted logistic regression models to assess the differences in respite use between White and Black caregivers over time., Results: In 2015, Black dementia caregivers had a respite care use rate 11.6 percentage points (95% CI: -16.9 to -6.4) lower than that of White dementia caregivers. However, both in 2017 and 2021, the difference in the use of respite was not statistically significant, leading to a reduced or no gap in respite use between White and Black dementia caregivers. However, respite use remained low in both groups., Conclusions: Although the gap in respite use between Black and White dementia caregivers had been gradually narrowed over time, more efforts are needed to encourage more respite use among both groups through targeted efforts to address factors that hinder respite use., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: The lack of adequate access to and use of sexual and reproductive health care by youth and adolescent, n low- and middle-income countries persists despite international accords on their rights, which exposes them to violence against children; early and unintended pregnancies; and sexually transmitted infections. This study examined functional sexual and reproductive health and right-based friendly services as perceived by exit male and female adolescents, caregivers, and health workers at the Tanzanian health services delivery points as they were the ones who would share their opinions to establish a diversified and representative reality about the matter based on sex., Methods: This was a multicentric study among 205 randomly selected participants in eleven selected health facilities within the three regions of Tanzania including Dar es Salaam, Dodoma, and Kigoma regions using a one-time descriptive cross-sectional design with a quantitative research approach from 01 to 30 November 2022. Triangulation technique of data collection activities using structured questionnaires and observation checklist adopted from the Tanzanian Ministry of Health was used to collect data. IBM Statistical Package for Social Sciences version 26 data entry templates (Sa PSS - 26) were used to analyze data descriptively to establish frequencies and percentages., Results: Results indicated that 205 participants were assessed in this study with a response rate of 100%. Exit adolescents (46%); health workers in dispensaries (60%), and community members (42%) were more likely to confirm the availability of functional SRH right-based adolescent and youth-friendly services at the health services delivery points. The SRH displays (50%); adolescent rights (6%) and confidentiality (5%) were the least reported functional SRH aspects by the study participants. It was noted that the 11 health services delivery points in their totality did not fully implement the National standards in providing the services to adolescents and youth of which standards III (54.0%) and VIII (46.1%) scored the lowest., Conclusion: The results of this study have uncovered that there is disperities in the availability and accessibility of functional SRH right-based adolescent and youth-friendly services across the levels of health facilities; among adolescents and community members. Hospitals were more likely to confirm the availability of Functional Right Based Youth Friendly Services than at health centers and dispensaries with female adolescents, youth, and community members being disadvantaged. There is a need to address issues of differentials in equity to the accessibility of services among adolescents, youth, and community members by improving functional sexual and reproductive health and right-based friendly services provision infrastructures, health care workers capacity building, and mechanisms or approaches to increase adolescents' access and uptake to SRHR services., (© 2024. The Author(s).)

Background: In pediatric palliative care, the main caregiver is primarily responsible for managing pharmaceutical therapies. Few data are available regarding the influence of this burden on quality of life in terms of time, concerns as well as a considerable risk of administration errors and adverse effects. This study aims to investigate how caregivers prepared and administrated medication, including errors and associated expectations, to identify improvement interventions., Methods: Between October 2022 and March 2023, a descriptive single-center survey study was carried out in the tertiary care pediatric palliative center of the Padova University Hospital. Participants were the caregivers of the patients followed by our center up to 23 years old, receiving at least one drug daily and who cannot self-administer their therapy. The questionnaire consisted of 18 multiple-choice and semi-closed questions, grouped into 4 main topics: therapy preparation, therapy administration, administration errors and therapy assessment., Results: A total of 100 caregivers responded to the survey. Mothers represented the main caregiver (91%). The prevalence of polypharmacy was 67% across the patients. 52% of caregivers handled prescriptions at least three times per day and for 32% it took to prepare them more than 5 min each time. Only 59% reported to have been trained for preparing and administrating drugs. 14% reported having made at least a drug administration error due to the tiredness or the complexity of therapeutic regimens in the preceding three months. Nearly one caregiver out of three felt their child was using too many drugs. 73% positively welcomed the possibility of having clinical pharmacist-led counseling., Conclusions: Many caregivers of pediatric palliative care patients frequently have trouble planning, preparing and delivering pharmacological therapy to their children. Attempting to simplify medication regimens, choosing formulations that are simpler to administer and measure, investing in improved caregiver training, talking about therapies with carers, and involving clinical pharmacists to clarify their doubts could be all potential strategies to improve this condition and reduce their burden., (© 2024. The Author(s).)

Background: Occupational balance (OB) has been associated with health indicators in informal caregivers (CGs) such as well-being and subjective health. Consequently, maintaining an adequate OB could be crucial to providing adequate care without becoming overwhelmed, converting the condition of caregivers into an important aspect of public health as the ageing population increases. However, little is known about the factors influencing OB in CGs. Thus, this study aimed to explore the associated factors with the OB in CGs of persons with dementia., Methods: We cross-sectionally analysed data from 134 CGs and the individuals with dementia. We assessed CGs' OB using the Occupational Balance Questionnaire (OBQ). Simultaneously, several sociodemographic, clinical, and caregiving-related variables including CGs' burden and psychological distress were assessed. The association between the CGs' OB and those factors was explored through robust multiple linear regression., Results: Firstly, CGs that presented secondary education exhibited a decrement of 5.41 (CI95% = -10.62, -0.41; p-value = 0.03) OB points. Moreover, CGs with higher education experienced a more pronounced OB reduction (β = -7.74; 95%CI = -12.19, -3.29; p-value = < 0.001). Secondly, those CGs that were retired showed an OB increment of 5.52 (CI95% = 1.14, 9.38; p-value = 0.01). Thirdly, receiving assistance with household chores was associated with an OB increase of 5.80 (CI95% = 2.21, 9.38; p-value = 0.001). Fourthly, and regarding clinical measures, CGs experiencing overload or psychological distress were associated with an OB points decrement of 7.87 (CI95% = -12.51, -3.23; p-value = 0.001) and 9.17 (CI95% =-13.51, -4.84; p-value < 0.001), respectively. Finally, 1% increment in the Disability Assessment for Dementia obtained from the individuals with dementia was associated with an increment of 0.11 (CI95% = 0.04, 0.18; p-value = 0.002) OB points., Conclusions: This study identified several associated factors with the OB of CGs of persons with dementia. Specifically, we remarked that the CGs' education, employment status, household chores assistance, overload presence, psychological distress symptoms and the functional level of the person with dementia who cared for were important variables that should be considered when evaluating OB or creating OB-related interventions in CGs., (© 2024. The Author(s).)

Objective: The objective of this study is to identify the top 10 research priorities on reducing and stopping psychiatric medication that reflect the perspectives and unmet needs of three key stakeholder groups (people with lived experience, family members/carers/supporters and healthcare professionals)., Methods: A priority-setting partnership was conducted using the James Lind Alliance's seven-step process. This involved (1) creating an international Steering Group of key stakeholder representatives and (2) identifying potential partners; (3) gathering stakeholders' uncertainties about reducing and stopping psychiatric medication using an online survey and summarising the survey responses; (4) checking the summary questions against existing evidence and verifying uncertainties; (5) shortlisting the questions using a second online survey; (6) determining the top 10 research questions through a prioritisation workshop; and (7) disseminating the results., Results: A total of 3635 questions were collected in the initial survey from 884 respondents of which 32 questions were verified as uncertainties. These questions were then ranked in a second online survey by 526 respondents and the findings discussed in a final prioritisation workshop by 30 participants to produce the final top 10 list of research questions. These questions cover a range of areas including the most effective ways of safely reducing/stopping psychiatric medication and providing support to individuals undergoing the discontinuation process, as well as the best ways to educate healthcare professionals on this topic., Conclusion: The top 10 list of research priorities was produced through extensive engagement with key stakeholders and highlights important uncertainties and gaps in the existing evidence base that need to be addressed by future research., Competing Interests: Competing interests: Cathal Cadogan (CC) sits on the Board of Directors for the Alliance for Benzodiazepine Best Practices; a not-for-profit organisation with the mission to inform evidence-based improvements in the use of benzodiazepines and Z-drugs. Anne Cody (AC) works at the Health Research Board, who part-funded the process The grant did not contain any expectation or condition of being included in the Steering Group. Adele Framer (AF) is the founder of SurvivingAntidepressants.org which is an online community of volunteers providing peer support for tapering all psychiatric drugs and their withdrawal syndromes. AF sit on the Board of Directors for International Institute for Psychiatric Drug Withdrawal a not-for-profit organisation which supports research and practice-based knowledge that will facilitate safe reduction of and withdrawal from psychiatric drugs and is President of the Psychotropic Deprescribing Council. Mark Horowitz (MH) is a collaborating investigator on the RELEASE and RELEASE+ trials in Australia evaluating hyperbolic tapering of antidepressants against tapering as usual. MH has received honoraria for lectures about deprescribing from several NHS Trusts, and universities in the US and the UK. MH is a co-founder of and consultant to Outro Health digital clinic which aims to help patients in the US to help stop no longer needed antidepressant treatment. Christy Huff (CH) is the Medical Director of the Benzodiazepine Information Coalition, a not-for-profit organisation with the mission of educating about the potential adverse effects of benzodiazepines taken as prescribed. Nicole Lamberson (NL) is a Medical Board Member of the Benzodiazepine Information Coalition, a not-for-profit organisation with the mission of educating about the potential adverse effects of benzodiazepines taken as prescribed. NL is cofounder of the Inner Compass Initiative's The Withdrawal Project, a not-for-profit organisation which seeks to help people make more informed choices about psychiatric diagnoses and drugs and build community with like-minded others thinking critically about today's mental health industry. NL is an Associate Member of the International Institute for Psychiatric Drug Withdrawal, a not-for-profit organisation which supports research and practice-based knowledge that will facilitate safe reduction of and withdrawal from psychiatric drugs. Luke Montagu (LM) is cofounder of the Council for Evidence-based Psychiatry which seeks to communicate evidence of the potentially harmful effects of psychiatric drugs to the people and institutions in the UK that can make a difference. All other authors declare no competing interests., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

There are few studies assessing psychological burden and quality of life (QoL) in caregivers of pediatric patients with nephropathic cystinosis, a severe chronic disease. This observational, single-center study aimed to explore the levels of anxiety, depression, care burden, and QoL status in caregivers of patients with nephropathic cystinosis. The Hospital Anxiety and Depression Scale (HADS), the Zarit Caregiver Burden Scale, and the Short Form-36 (SF-36) were administered to caregivers of pediatric patients with nephropathic cystinosis. Nine caregivers of pediatric patients with nephropathic cystinosis participated in the study (6 boys and 3 girls; mean age, 12.6 ± 4.2 years). All participating caregivers were the patient's mothers. Of the 9 caregivers, 6 showed anxiety/depression and 4 severe care burden. Overall, SF-36 QoL domains with a worse perception by caregivers were 'general health' and 'health change over time'. Mothers without depression/anxiety and low care burden had better QoL perception (p = 0.02). All caregivers with high care burden showed anxiety/depression. In our study cohort, caregivers of pediatric patients with nephropathic cystinosis showed high levels of anxiety/depression, high care burden, and impaired QoL, highlighting the importance of detecting psycho-social issues to implement strategies that relieve family stress and improve coping strategies., (© 2024. The Author(s).)

Background: Home-based care (HBC) services have gained global attention for their potential to reduce caregiver burden among informal caregivers of persons with dementia (PwDs), who experience high caregiving intensity. However, research on HBC and its effects on dementia caregiving in China remains limited., Methods: Data were collected from primary caregivers of PwDs in Jiangsu Province, China. Caregiving intensity and HBC utilization were measured using self-developed instruments. Caregiver burden was assessed by The Burden Scale for Family Caregivers-short. Factor analysis was employed to decompose HBC services. Hierarchical multiple regression analysed the moderating effects of HBC on the relationship between caregiving intensity and burden., Results: A community sample of 318 caregiver and PwDs dyads was included. Caregivers averagely aged 62.16 years, with 61% being female, 84% not employed, and 66.2% having low income. PwDs aged 77.45 years averagely, with 52.8% being female and an average behavioural problems score of 42.27. Caregivers averaged 15.19 on response measures. The number and time spent on ADL-based tasks were positively associated with caregiver burden (β = 0.26, p < .001; β = 0.16, p < .01). However, attendance and time of supervision tasks were not significant predictors of burden. HBC services in China comprised four dimensions: Referral service, Household care, Skilled care, and Mental health service. While these did not directly predict caregiver burden, they moderated the associations between ADL-based tasks and caregiver burden (β=-0.25, p < .001; β=-0.24, p < .001; β=-0.23, p < .001; β=-0.20, p < .001), between time of ADL-based tasks and caregiver burden (β=-0.17, p < .001; β=-0.18, p < .001; β=-0.17, p < .001; β=-0.15, p < .01), and between the attendance at supervision tasks and caregiver burden (β=-0.11, p < .05; β=-0.20, p < .001; β=-0.17, p < .001; β=-0.17, p < .001). Only Referral service buffered the relationship between supervision time and caregiver burden (β = -0.13, p < .01)., Conclusion: Informal caregivers of PwDs face high caregiving intensity and burden. HBC services may moderate this relationship, with different services playing varying roles. Further research is essential to explore the impact of supervision levels and develop effective strategies to enhance HBC services for dementia caregiving in China., (© 2024. The Author(s).)

Introduction: This scoping review mapped evidence on physical activity (including structured exercise) and sedentary behaviour interventions (interventions to reduce sedentary behaviour) in people living with both frailty and multiple long-term conditions (MLTCs) and their informal carers., Methods: Ten databases and grey literature were searched from 2000 to October 2023. Two reviewers screened studies and one extracted data. Results were shared with three stakeholder groups (n = 21) in a consultation phase., Results: After screening, 155 papers from 144 studies (1 ongoing) were retained. The majority were randomised controlled trials (86, 55%). Participants' mean age was 73 ± 12 years, and 73% were of White ethnicity. MLTC and frailty measurement varied widely. Most participants were pre-to-moderately frail. Physical health conditions predominated over mental health conditions.Interventions focused on structured exercise (83 studies, 60%) or combined interventions (55 studies, 39%). Two (1%) and one (0.7%) focused solely on habitual physical activity or sedentary behaviour. Adherence was 81% (interquartile range 62%-89%) with goal setting, monitoring and support important to adherence. Carers were only involved in 15 (11%) studies. Most interventions reported positive outcomes, primarily focusing on body functions and structures., Conclusions: A modest volume of evidence exists on multicomponent structured exercise interventions, with less focus on habitual physical activity and sedentary behaviour. Interventions report largely positive effects, but an updated systematic review is required. The field could be advanced by more rigorous characterisation of MLTCs, socioeconomic status and ethnicity, increased informal carer involvement and further evaluation of habitual physical activity and sedentary behaviour interventions., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Objective: To apprehend the family's perception of the care provided by home care services to children and adolescents with special health needs., Method: Qualitative, exploratory-descriptive study, carried out with 15 family members of children and adolescents with special health needs served by Home Care Services in seven municipalities in Paraíba, in 2021, selected from nine municipalities identified by previous studies. Data were collected using semi-structured interviews carried out remotely through telephone calls. The empirical material was subjected to Inductive Thematic Analysis and interpreted in light of the concept of health vulnerability., Results: The Home Care Services facilitate minimize the health vulnerabilities of these children and adolescents and their families as they facilitate access to the actions and services of the Health Care Network, provide humanized care focused on promoting health and strengthening bonds, as well as how, they facilitate family decision-making at home regarding users' health needs., Final Considerations: The actions of these services permeate family daily life, enabling the expansion of care practices for family members/caregivers considering their limitations and improving the coordination of Health Care Networks to guarantee comprehensive care.

In light of China's progressively aging population, family care with the "warmth of affection" has always been an irreplaceable form of care that meets the wishes of the majority of disabled elderly to enjoy their twilight years comfortably. Data from a follow-up survey on the influencing factors of the Chinese Longitudinal Healthy Longevity Survey from 2018 and the Anderson Model was used as a theoretical framework to analyze the influencing factors using a binary logistic regression model. Children were the main providers of care services among disabled elderly in family care. Family care for disabled elderly was influenced by the combined effects of age (P < 0.01), gender (P < 0.05), marital status (P < 0.01), number of children (P < 0.01), housing ownership (P < 0.05), primary carer preference (P < 0.05), and self-assessed health (P < 0.01) were jointly affected. As a result, it's critical to set up a strong social support network that is focused on family caregiving and includes tailored interventions based on the requirements of disabled elderly and family caregivers., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Zhang, Wang. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Purpose: Research has shown that caregiver burden is compounded by dysphagia experienced by the care recipient. However, little is known about the caregiver perception of the caregiving experience, highlighting both the positive and negative experiences. As such, the purpose of this clinical focus article was to provide a first-person account of an adult caregiver of an aging parent with dysphagia and relate their experiences to current literature to inform clinical practice., Method: The caregiver provided a detailed account of her experiences caring for her father with dysphagia. Her account was analyzed to identify recurring themes in the literature regarding the caregiving experience and to identify gaps in dysphagia-related caregiver support. The caregiver's story is organized into seven main sections: (a) life before dysphagia, (b) dysphagia onset and diagnosis, (c) dysphagia management and support, (d) community support, (e) impact on family relationships, (f) social and emotional health, and (g) current perspectives on the caregiving experience., Conclusions: The challenges associated with caregiving clearly impact the caregiver's overall well-being, but she received abundant support from her family, community-based speech-language pathologist, and caregiver support groups. The caregiver's experiences, while not applicable to every caregiver caring for a loved one with dysphagia, can offer valuable insights to clinicians and other caregivers facing similar situations.

Introduction: This study investigated the prevalence, methods and factors leading carers of childhood cancer patients to seek second opinions., Methods: A prospective, questionnaire-based study was conducted among families attending oncology clinics at Sydney Children's Hospital, Randwick. Participants were asked whether they had sought a second opinion for their child and if so, their motivations. Factors including cancer diagnosis, carer demographics and online health seeking behaviours were evaluated in association with second opinions. A separate online questionnaire invited paediatric oncologists worldwide to indicate the frequency of, and their approach to, second opinion requests via email., Results: Fourteen out of 126 carers (11.1%) sought a second opinion from another oncologist to confirm diagnoses (64.3%), explore treatment options (64.3%) or receive additional information (57.1%). A brain cancer diagnosis was the most significant predictor for second opinion seeking in univariate (p = 0.009) and multivariate analyses (p = 0.015). Among carers who reported using the internet for health information seeking (n = 98), second opinions were independently associated with social media use (p = 0.014) and frequent health-related searches (p = 0.027). Most paediatric oncologists (71/89, 79.8%) had received second opinion requests via email, with 21.3% (19/89) reporting that these occur at least weekly. Surveyed oncologists provided a second opinion for some (59.2%) or all (33.8%) requests they received, with 68.5% supporting guideline development for second opinions in paediatric oncology., Conclusions: Second opinions are regularly sought by carers of childhood cancer patients, with many paediatric oncologists approached over email. International guidelines may be warranted to assist paediatric oncologists and families in navigating these requests., (© 2024 John Wiley & Sons Ltd.)

Objective: Individuals with neurodevelopmental and/or neurocognitive disorders (NNDs) have complex, long-term care needs. In Bangladesh, India, and Pakistan, informal carers shoulder the responsibility and strain of providing care for people with NNDs. Intense care demand, societal and cultural care expectations, and lack of support infrastructure often lead to psychosocial strain in this inadequately researched community, particularly during crises such as the COVID-19 pandemic. This study explored and identified specific features of the coping styles exhibited by informal carers of people with NNDs from Bangladesh, India, and Pakistan during the COVID-19 pandemic., Material and Methods: Between June and November 2020, 245 carers in India, Pakistan, and Bangladesh responded to open-ended questions in the CLIC (Coping with Loneliness, Isolation, and COVID-19) survey. A reflexive thematic analysis was conducted to uncover the underlying themes and identify coping strategies and stressors. A frequency analysis was performed to examine the associations between these themes and carer nationality. Significant tests identified coping styles., Results: We identified three coping styles: religiosity (Pakistan), caregiving as a natural life path (Bangladesh), and self-care (India). The religiosity and natural life path styles reside on the fatalism/acceptance continuum and suggest an insight-oriented therapeutic approach. Self-care is a problem-solving strategy that calls for a behaviorally oriented approach. Family overreliance on the carer was a concern across all three groups., Conclusions: The findings underscore the need for accessible support pathways to sustain care standards, ensuring the well-being of carers and care recipients., (© 2024 John Wiley & Sons Ltd.)

Objective: Limited research exists on comprehensive interventions for individuals with Alcohol Related Brain Injury (ARBI). Exploring the impact of a rehabilitation service on individuals with ARBI and their relatives/caregivers, this study aimed to gain insights into their experiences and assess how the service influenced cognitive functioning, psychological well-being, social relationships, community engagement, and the desire for abstinence., Method: This was a qualitative, semi structured interview study as part of a larger mixed methods study of residents and their family members. Data was collected over 4 timepoints with n  = 20 residents: baseline ( n  = 20 interviews), 6 months ( n  = 15 interviews), 12 months ( n  = 6 interviews) and at discharge ( n  = 8 interviews). The interviews took place at a specialist residential rehabilitation facility for people with ARBI. Remote interviews were conducted with family members ( n  = 10). A thematic analysis of transcripts using NVivo software was undertaken., Results: Qualitative findings for residents with ARBI across 4 timepoints from baseline to time of discharge indicated an improvement in all outcomes. Overall, residents reported that the ARBI holistic intervention improved psychological wellbeing, social relationships/community participation, functioning abilities, and abstinence from alcohol, particularly when residents were residing in the unit. Family members and carers presented more trepidation regarding the long-term impacts., Conclusion: Whilst the residential unit provided structure and a protective environment, residents required ongoing support post discharge for their addictive behaviours. An outreach intervention for these individuals is currently being piloted., Competing Interests: DW was employed by Leonard Cheshire ARBI Facility. JW and RM were employed by Belfast Health & Social Care Trust. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Campbell, Millen, Jordan, Watson, Watson and McCorry.)

Background: Family hardiness is a key variable contributing to positive family functioning, which has significant effects on the quality of life and the mental health of patientsand caregivers. The factors that contribute to family hardiness support both the psychological and physical well-being of caregivers is unknown. More specifically, the relationship of family hardiness with attachment and caregiver preparedness has not been explored., Aim: The current study aimed to investigate the family hardiness in caregivers of breast cancer patients and explore the relationship with attachment and caregiver preparedness and identify the associated factors., Methods: This cross-sectional correlational study was conducted from March to July, 2022. 140 caregivers of breast cancer patients were recruited in two IIIA-grade hospitals in Hunan Province using convenience sampling. Data were collected using a personal characteristics questionnaire, The Family Hardiness Index (FHI), Caregiver Preparedness Scale (CPS), and the Experiences in Close Relationships Inventory-Revised Edition (ECR-R). Chi-square, Pearson's correlation coefficient, generalized additive model and multiple logistic regression analyses were performed., Results: A total of 140 caregivers participated in the study. The mean age of participants was (42.29 ± 14.54) years and most of them were male (57.1%). The mean FHI score of caregivers was 58.11 ± 5.67. Multiple linear regression analysis indicated that family hardiness is affected by ECR-R, CPS, education level, and knowledge of breast cancer. The score of CPS was positively associated with family hardiness ( β  = 0.265, p  < 0.001), whereas ECR-R negatively predicted family hardiness ( β  = -0.078, p  < 0.001)., Conclusion: Family hardiness plays a critical role in helping caregivers manage the stresses associated with providing care to breast cancer patients. Enhancing caregiver preparedness and education, as well as addressing attachment-related issues, can significantly improve family hardiness. In light of our findings, we suggest that closer relationships within families, adding preparedness and knowledge of disease should be encouraged during the care of breast cancer patients., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Sun, Xu and Sheng.)