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Objective: This study aimed to evaluate the degrees of dependence and presence of bacterial plaque in children with autism spectrum disorder (ASD) and the quality of life of children and their caregivers. Method and materials: This was a cross-sectional observational study. This study included 119 individuals with ASD and their caregivers. Data were collected through a sociodemographic questionnaire, WHOQOL-Bref, and Burden interview to measure quality of life and caregiver burden, respectively. The Autoquestionnaire Qualité de Vie Enfant Imagé questionnaire, adapted in game format, was applied to verify quality of life in children with ASD. An oral clinical examination evaluated the visible plaque index. The collected data were tabulated and organized for statistical analysis with a significance level of 5%. Results: It was observed that 52% of the children had a severity of ASD level 1; 70% were dependent for general activities, and 65% were dependent for oral hygiene. Of the 77 children who thoroughly answered the questionnaire about their quality of life, 64.9% had good quality of life, and 35.1% had scores below 48, that is, low quality of life. In general, the caregivers generally presented quality of life with a rate of 60.95 (good) points on the scale. It was observed that gingival bleeding greater than 30% is two (ASD 2 + ASD 3) to three (ASD 3) times more likely to occur in patients who have higher levels of ASD (P < .004). Conclusion: It was concluded that the quality of life of individuals with ASD was good, that most children are dependent for their daily activities and oral hygiene, and that they showed reasonable plaque control. On the other hand, the caregivers presented low quality of life and moderate burden. [ABSTRACT FROM AUTHOR]

Employing China Family Panel Studies (CFPS) survey data from 2014 to 2018, this paper studies the impact of the digital economy on the gender wage gap. Benchmark results suggest that the digital economy can significantly narrow the gender wage gap. The mechanism analysis shows that the digital economy bridges the gender wage gap by reducing family care burdens and improving the employment quality in favour of women. The heterogeneity analysis shows that the digital economy is conducive to narrowing the gender wage gap of the group with low and medium labour skills and the group with higher family burdens, suggesting the inclusiveness of the digital economy for disadvantaged women. These findings have important policy implications and provide evidence for improving women's economic condition and narrowing the gender wage gap. [ABSTRACT FROM AUTHOR]

Purpose: Inborn errors of metabolism (IEM) are known with poor long-term health concerns; however, the health-related quality of life (HRQoL) and the burden placed on families remain unclear. This study investigated the self- and proxy-reported HRQoL of pediatric patients with IEM with or without developmental disabilities and the burden placed on their caregivers. Methods: Patients with IEM aged 8–15 years and their caregivers were asked to respond to the Pediatric Quality of Life Inventory (PedsQL), EuroQoL five-dimension questionnaire for younger populations (EQ-5D-Y), and Japanese version of the Zarit Caregiver Burden Interview (J-ZBI). We compared EQ-5D-Y scores with matched EQ-5D-Y population norms. Intraclass correlation coefficients (ICC) for self and proxy HRQoL scores of those without developmental disabilities were calculated. Correlation coefficients of HRQoL proxy responses with J-ZBI score were estimated. Results: We included 66 patients with IEM (mean age, 11.5 years; males, 41.2%) in the study. The mean (± standard deviation) EQ-5D-Y scores without and with developmental disabilities were 0.957 (± 0.071) and 0.821 (± 0.175), respectively. The EQ-5D-Y scores significantly increased compared with the reference values (p < 0.01, effect size = 0.337). The ICC values were 0.331 and 0.477 for the EQ-5D-Y and PedsQL scores, respectively. HRQoL proxy scores had strong negative correlations with J-ZBI scores. Conclusion: The HRQoL of patients with IEM without developmental disabilities in our study was similar to that of the general Japanese population. The HRQoL of patients with IEM with developmental disabilities was low and associated with a tendency towards an increased burden of care. [ABSTRACT FROM AUTHOR]

China's fertility policy and population aging have produced many "4-2-2"–structured sandwich families, placing the sandwich generation under dual caregiving stress. Through reflective lifeworld research and multilevel interviews with 14 "4-2-2" families, we confirmed that the essence of "dual stress" was the competing responsibilities of caring for older adults and children. This essence can be further illustrated by the vulnerability of the cared-for, lack of emotional resources, socio-educational anxiety, and family livelihood pressure. In addition, the dual stress can jeopardize the well-being of the sandwich generation as family caregivers. However, this dilemma can be alleviated by intergenerational support-balancing, alternative digital-technology, and complementary social-care strategies. Understanding the lifeworld of sandwich families presents practical approaches and policy implications for caregiving-support systems. [ABSTRACT FROM AUTHOR]

Purpose: Informal caregivers (ICs) in Africa perform a long list of tasks to support hospitalization care. However, available studies are weak in accounting for the experiences of everyday role-routines of hospital-based informal caregiving (HIC) in under-resourced settings. This article explored the experiences of role-routines among informal caregivers in a Nigerian tertiary health facility. Methods: The ethnographic exploratory study relied on primary data collected from 75 participants, including 21 ICs, 15 inpatients, 36 hospital staff, and 3 ad-hoc/paid carers in a tertiary health facility in Southwestern Nigeria. Results: ICs perform several essential roles for hospitalized relatives, with each role characterized by a range of tasks. An integrative narrative of everyday routines of HIC as experienced by ICs showed critical complexities and complications involved in seemingly simple tasks of assisting hospitalized relatives with hygiene maintenance, medical investigations, blood donation, resource mobilization, errand-running, patient- and self-care and others. The role-routines are burdensome and ICs' experiences of them revealed the undercurrents of how health systems dysfunctions condition family members to support hospitalization care in Nigeria. Conclusion: The intensity and repetitive nature of role-routines is suggestive of "routinization of suffering". We recommend the closing of gaps driving hospital-based informal caregiving in Africa's under-resourced settings. [ABSTRACT FROM AUTHOR]

Purpose: This study comprehensively examines the disability acceptance experience of individuals who become disabled following accidents in the military after enlistment. Methods: In-depth interviews and participative observation of two soldiers with disabilities are conducted. Data sources encompass the transcripts from these interviews, relevant news videos, and articles on the participants. A qualitative case study approach is applied to conduct both "within-case" and "cross-case" analyses. Results: Although the two participants survived a crippling accidents, their military units did not actively attempt to resolve the accident. They grappled with despair and found it challenging to accept their new status as individuals with disability. Over time, they noticed changes in their personal relationships and started considering themselves burdens on their caregivers. However, despite encountering psychological challenges, which were marked by repeated setbacks and disappointments, the soldiers consistently made determined efforts to realize their objectives. Moreover, they strove to lead purposeful lives despite suffering the adversities caused by their disabilities. Conclusions: This study is the first in-depth examination of the disability acceptance experiences of soldiers with disability. The insights gleaned from our in-depth interviews will help formulate psychological and physical support systems for such individuals. [ABSTRACT FROM AUTHOR]

Background: Parkinson's disease is a progressive neurodegenerative disorder. The majority of the nearly 9 million people living with Parkinson's disease are men. As such, caregiving is often assumed by wives as the disease progresses. However, there is little research about the lived experience of wives as they transition to caregivers. Objective: To describe the lived experience of wife caregivers of male spouses living at home with Parkinson's disease. Methods: A descriptive phenomenological study. Semi-structured interviews were recorded and transcribed for analysis in Atlas.ti using Colaizzi's method. Results: Thirteen women, aged 50 to 83 years, were interviewed. Five themes emerged from the analysis, (1) caregiver who? (2) taking it day by day, (3) not sure what to do next, (4) just too much, and (5) caring is your soul's growth, to support the central theme "there is no cure for caregiving." Conclusion: Transitioning from wife to caregiver was a gradual but difficult process. Although the wife caregivers wanted to be part of the health care team, they remained outsiders. Clinicians need to recognize the wives as care coordinators linking medical management with home care. Policy makers need to develop reimbursement models that provide wife caregivers with support groups, education programs, and telemental health services. [ABSTRACT FROM AUTHOR]

Background: The global COVID-19 pandemic has shown the vulnerability of some population groups, including persons with intellectual and developmental disabilities (IDD). Aim: The present paper will provide more clarity and understanding of the experiences of family members of persons with IDD housed in residential facilities in Catalonia within the period of maximum restrictions during the COVID-19 pandemic. Methods and procedures: Semi-structured interviews were conducted using an interpretive phenomenological qualitative approach. Study participants consisted of 14 relatives of IDD individuals who were institutionalized in residence facilities or homes. The guiding questions emerged from group discussions with relatives of those with IDD who did not participate in the subsequent interviews. Drawing from this group, the factors that were identified to have had the greatest impact on their lives were later used to guide the interviews. Data collection was carried out in face-to-face individual interviews that were recorded together with the observations of two researchers between February and October 2022. Results: Our analysis identified 4 main themes that developed into additional factors: the decision to stay at home or in the residence, fear, illness, and protocol. Individuals with IDD lost their daily routines, suffered from social isolation, and did not understand the situation. Conclusion: The results of this study allow for a better understanding of the experiences of families of persons with IDD in residential centres during the lockdown by identifying their needs and how to better support them in the future. Outcomes and results: Knowledge and understanding of these events should allow for better management of similar situations in the future. The impact of the present research: This study contributes to a growing body of research that examines the experiences of IDD individuals and their families during the early months of the COVID-19 pandemic. A qualitative phenomenological interpretative approach was used following the recommendations of qualitative research practices in health care. Our findings reveal that relatives of persons with IDD who lived in residential care homes felt that the residents were not adequately cared for by the staff, who applied measures for containment and contagion prevention that were disproportionate, resulting in their needs not being considered; these recommended measures had been developed for elderly care homes. Individuals with IDD lost their daily routines, suffered from social isolation, and did not understand the situation. The present findings show that residential care homes for persons with IDD require specific action protocols in crisis situations that are adapted to the needs and characteristics of each centre,thus adopting a model of care based on human rights. [ABSTRACT FROM AUTHOR]

Objective: This study aims to explore the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema. The findings will provide a basis for developing targeted and effective nursing interventions. Methods: A phenomenological research approach was employed. From October 2022 to January 2023, semi-structured in-depth interviews were conducted with 12 caregivers of infants with congenital megacolon undergoing home reflux enema in a tertiary paediatric hospital in Fujian Province. The collected data were analysed and organized using the Colaizzi's 7-step analysis method, leading to the identification of key themes. Results: The analysis yielded three major themes concerning the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema: inadequate disease-related knowledge, presence of multiple pressures during the caregiving process, and a desire for greater support. Conclusions: This study employed qualitative interviews with the caregivers of 12 children with congenital Hirschsprung's disease undergoing home reflux enema, and the feelings of caregivers of children with reflux enema at home after discharge were deeply understood. It is recommended to implement positive psychological interventions based on the PERMA model and incorporate "Internet + collaborative nursing" to provide caregivers with professional knowledge, address their pressures and needs, and promote their well-being while enhancing nursing abilities. [ABSTRACT FROM AUTHOR]

Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood. This prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (NSR) sites in partnership with the NSR Parent Advisory Panel. Parents completed surveys at discharge; 12, 18, and 24 months; and 3, 4, 5, 7, and 8 years. Surveys included demographic information and open-ended questions targeting parent experience. A conventional content analysis approach was used. A total of 320 caregivers completed at least one open-ended question, with the majority of respondents at discharge (n = 142), 12 months (n = 169), 18 months (n = 208), and 24 months (n = 245). We identified the following three primary themes. (1) Personal Burden of Care: Parents experienced emotional distress, financial strain, physical demands, and fears for their child's unknown outcome; (2) Managing Day-to-Day Life: Parents described difficulties navigating their parenting role, including managing their child's challenging behaviors and understanding their child's needs amid neurodevelopmental impairment; (3) My Joys as a Parent: Parents valued bonding with their child, being a caregiver, and watching their child's personality grow. Parents of children impacted by neonatal seizures face persistent challenges, which are interwoven with the joys of being a parent. Our findings suggest that future interventions should promote resiliency, address caregivers' psychosocial needs longitudinally, and provide enhanced support for parents caring for children with medical complexity. [ABSTRACT FROM AUTHOR]

We investigated dyspnea; its associated risk factors; and its impact on health care utilization, quality of life, and work productivity in adults with undiagnosed respiratory symptoms. What is the impact of dyspnea in adults with undiagnosed respiratory symptoms? This population-based study included 2,857 adults who were experiencing respiratory symptoms. These individuals had not been previously diagnosed with any lung conditions and were recruited from 17 Canadian centers using random digit dialing. Each participant underwent spirometry testing both before and after using a bronchodilator to determine if they met the diagnostic criteria for COPD, asthma, or preserved ratio impaired spirometry (PRISm), or if their spirometry results were normal. An age-matched control group (n = 231) was similarly recruited using random digit dialing. A dyspnea impact assessment score from 0 to 100 was produced using questions from the COPD Assessment Test and St. George's Respiratory questionnaire. Individuals with PRISm (n = 172) reported more impactful dyspnea (mean score, 63.0; 95% CI, 59.5-66.4) than those with undiagnosed asthma (n = 265; mean score, 56.6; 95% CI, 53.9-59.3) or undiagnosed COPD (n = 330; mean score, 57.5; 95% CI, 55.1-59.9). All groups reported significantly more impactful dyspnea than the control group (mean score, 13.8; 95% CI, 11.8-15.7). Patient-specific risk factors including age, sex, BMI, smoking, and comorbidities explained 20.6% of the variation in dyspnea. An additional 12.4% of the variation was explained by disease classification and another 1.7% by the severity of lung function impairment assessed with spirometry. After adjusting for age, sex, and BMI, greater dyspnea impact was associated with increased health care utilization, lower quality of life, and reduced work productivity. Our findings showed that in community-based adults with undiagnosed respiratory symptoms, those identified with PRISm experienced the greatest impact of dyspnea. Dyspnea imposes burdens on the health care system and is associated with impaired quality of life and work productivity. [ABSTRACT FROM AUTHOR]

Aims: Based on the two‐factor model of caregiving appraisals, this study aims to (1) investigate the relationships between competence in dementia care and job satisfaction (work attitudes in positive aspect) and turnover intention (work attitudes in negative aspect) among formal caregivers in nursing homes, and (2) examine the mediating roles of positive aspects of caregiving (caregiving appraisals in positive aspect) and caregiving burden (caregiving appraisals in negative aspect) in the above associations. Design: A cross‐sectional design was used. Structural equation modelling was employed to test the proposed model. STROBE checklist guides the reporting of this study. Methods: Using the multistage cluster sampling method, 407 formal caregivers were selected from 43 nursing homes across 7 districts/counties in China. Results: The proposed model shows a good model fit. Competence in dementia care shows significant positive associations with increased job satisfaction and decreased turnover intention among formal caregivers in nursing homes. Caregiving burden and positive aspects of caregiving mediate the relationships between competence in dementia care and both job satisfaction and turnover intention. Furthermore, the relationship between positive aspects of caregiving and job satisfaction is stronger than that with turnover intention, but the relationship between caregiving burden and turnover intention is not stronger than that with job satisfaction. Conclusions: The results demonstrate that the two‐factor model of caregiving appraisals effectively elucidates the associations and underlying mechanisms between competence in dementia care and formal caregivers' work attitudes. Specifically, two crucial conclusions are drawn: (1) competence in dementia care is associated with higher levels of job satisfaction and lower levels of turnover intention among formal caregivers in nursing homes; (2) caregiving burden and positive aspects of caregiving serve as parallel mediators in these associations. Implications for the Profession and/or Patient Care: Policymakers and nursing homes managers should implement a series of measures aimed at formal caregivers in nursing home. Specifically, allocating more resources to enhance the competence in dementia care of formal caregivers is crucial, given its significant association with elevated job satisfaction and reduced turnover intention. Besides, positive and negative caregiving appraisals emerge as proximal factors influencing work attitudes of formal caregivers. Therefore, intervention projects focused on formal caregivers in nursing home should target enhancing positive experiences and alleviating caregiving burden. Patient or Public Contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

This study investigated the racial/ethnic differences in COVID-19-related worry amongst family caregivers of adults with intellectual and developmental disabilities (IDD) living in Texas using the COVID-Related Thoughts and Behavioral Symptoms-Adult Version (COV-TaBS-A) questionnaire. Two hundred and six caregivers completed the survey. Compared to White caregivers, Latino caregivers were more likely to be very concerned about having enough food and supplies (adj OR 3.41, 95% CI [1.50, 7.74]) when adjusting for being that sole caregiver and using provider services. In free text questions, caregivers described feeling overwhelmed by additional responsibilities, disruptions in home health services, and concerns about their loved ones' wellness. Study findings can be used to strategize support for caregivers of adults with IDD during pandemic/emergency situations. [ABSTRACT FROM AUTHOR]

Acquired brain injury (ABI) is one of the most common causes of disability and death globally. Support from informal caregivers is critical to the well-being and quality of life of people with ABI and supports the sustainability of global health and social care systems. This study presents an in-depth qualitative analysis of the experiences of eight British informal caregivers supporting someone with ABI. Semi-structured interviews were conducted with narratives transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Three superordinate themes were generated: making sense of brain injury; being consumed by caregiving; and, the changing self. These data highlight the impact of caregiving on the caregiver's illness perceptions and sense of self. By identifying negative and positive changes in the caregiver's sense of self, and dilemmas regarding the care recipient's behaviour, we address less understood aspects of caregiver experiences. Caregiving can pose both challenges to the caregiver's sense of identity and an opportunity for self-growth. Some caregivers exhibit resilience throughout their journey, with post-traumatic growth more apparent in the later stages of caregiving. Illness perceptions shape caregiver well-being and family dynamics and indicate the need to address stigmatisation and discrimination faced by ABI survivors and caregivers. Although some caregivers acquired positive meaning and enrichment from their caregiving, previously described challenges of ABI caregiving are supported. Overall, our findings support the need for timely psychological/mental health support for caregivers, caregiver education, and the provision of short breaks from caregiving. [ABSTRACT FROM AUTHOR]

Primary palliative nursing in home health care (HHC) can be delivered to medically complex patients across the lifespan. Primary palliative nursing provides patient- and family-centered care for serious illness by alleviating the stress and symptoms of illness; coordinating care; and supporting the social, cultural, and psychological aspects of care. In this article, two case scenarios of patients in different phases of life serve as examples of primary palliative nursing in HHC. Key elements and challenges of delivering primary palliative nursing care in HHC are also highlighted. The authors discuss the key elements and challenges of primary palliative nursing in the home health care setting and offer two case scenarios of patients receiving such care. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate QOL and caregiver burden of children and teenagers submitted to hemispherotomy for pharmacoresistant epilepsy, by comparing pre and post-surgical intervention data. Materials and methods: Retrospective analysis of pediatric patients submitted to surgical hemispherotomy before intervention (preOP) and their follow-up at 6 months (6 M PO) and 2 years (2Y PO) after surgery. QOL was evaluated through the Quality of Life in Childhood Epilepsy (QVCE-50) questionnaire and caregiver burden, through the Zarit Burden Interview (ZBI) tool. Results: Twenty-two patients were included in the study. Sixteen patients (72%) were classified as Engel I at 2Y PO follow-up. QVCE-50 scale showed improvement of total QOL at 2Y PO. In relation to QVCE-50-specific domains, there was an improvement in the physical domain and in the cognitive-education a decrease in psychological and a stabilization in social/familiar domain scores. The majority of caregivers classified their burden as mild to moderate, with no PO improvement. Conclusions: Hemispherotomy represents an effective seizure control treatment, as well as it contributes to improvement of QOL, particularly in the physical domain and in spite of children's physical and cognitive limitations. However, no improvement in caregiver burden was observed, probably due to the chronic condition of these patients, which might be worsened by social issues. [ABSTRACT FROM AUTHOR]

Most children with a rare disease are cared for by their family members but parenting such a child is extremely demanding due to the complexity and severity of symptoms, with serious physical, emotional, social, and financial consequences for caregivers. Although religion may serve as a positive coping strategy, little is known about its role in helping caregivers manage the stress related to the burden of caregiving in Poland. Therefore, we surveyed 925 Polish family caregivers of children with rare diseases to understand the association between caregivers' religiosity and their caring experiences. The findings suggest that parents' religiosity is associated with a more positive caregiving experience, perceived quality of life, and experienced caregiving burden. While religious caregivers reported experiencing less distressing emotions and stressed the encouraging impact of their child's disease on their life more often, non-religious caregivers experienced role captivity and role overload more frequently. Since religion may serve as a source of strength and a protecting factor against mental health problems and the burden of caregiving, healthcare professionals should be aware of the importance of religious and spiritual care, and caregivers' religiosity should be considered an integral part of a holistic approach. [ABSTRACT FROM AUTHOR]

Background: As family members affect patient outcomes following open‐heart surgery, the objective was to provide updated knowledge on family involvement in to guide future interventions facilitating family involvement. Aim: The aim was to explore and describe the experiences and actions of important situations of family involvement asexpressed by patients who underwent elective open‐heart surgery in Sweden. Methodological Design and Justification: The critical incident technique (CIT) was used, which is a qualitative research method suitable for clinical problems when a phenomenon is known but the experiences and consequences of it are not. Ethical Issues and Approval: Considerations for patient integrity were made during the recruitment phase by ensuring that voluntary informed consent was obtained in two steps. Research Methods: Individual interviews were conducted with 35 patients who underwent open‐heart surgery in Sweden in 2023. Important situations were analysed according to the CIT method. Results: Two main areas emerged: Patients described important situations of family involvement as experiences of mutual dependency while also being independent individuals. These experiences led to balancing healing and risk‐taking activities as a family. The positive consequences of family involvement described by patients included improved recovery through practical help at home and emotional support. Conclusions: As complements to preserving the existing positive aspects of family involvement, social support screening, the establishment of individualised visitation policies and the provision of professional and peer support earlier can improve patient recovery following open‐heart surgery. [ABSTRACT FROM AUTHOR]

The existing paradigm on recovery in mental health prioritises self‐empowerment and person‐centred, community‐based care, which necessitates family caregivers' collaboration to support individuals with schizophrenia in the community. However, the role of family caregivers is often under‐recognised and hence insufficiently supported. This consequently compromises caregivers' well‐being and, ultimately, the recovery of individuals with schizophrenia. Although caregiver‐targeted psychoeducation may offer practical support, its effectiveness lacks conclusive evidence. This review aimed to evaluate the impacts of psychoeducation on caregiver‐related outcomes (caregiver burden, quality of life and expressed emotion). Eight electronic databases were searched from inception to September 2023, supplemented by hand searching of end‐reference lists. Two reviewers independently conducted title and abstract screening with predetermined eligibility criteria. A third reviewer was consulted to resolve any discrepancies. A random‐effects meta‐analysis was performed to estimate pooled effect sizes alongside subgroup and sensitivity analyses where appropriate. Twenty‐one studies (totalling 1639 caregivers) were included, based on which psychoeducation contributed to a statistically significant improvement in caregiver‐related outcomes. Given substantial heterogeneity, subgroup and sensitivity analyses were done for the durations and the evaluative scales for psychoeducation. Quality appraisal revealed unclear or high bias in most studies. Notwithstanding the heterogeneity, the directions of the effect sizes consistently indicated the effectiveness of psychoeducation across all outcomes. This finding aligned with Lazarus' stress appraisal and coping theory, which states that psychoeducation improves caregivers' knowledge, coping mechanisms and situation appraisal. Our findings offer encouraging evidence to advocate the integration of psychoeducation into healthcare services, but policy‐based support is warranted for sustained implementation. Further research is merited to optimise its duration and content and appraise its long‐term impacts through disease‐specific scales for objective and subjective outcomes. [ABSTRACT FROM AUTHOR]

Intimate partner violence (IPV) transcends cultural, social and economic boundaries, affecting countless individuals globally. Recovery for IPV survivors is supported by their social networks, yet the readiness of these networks is often poorly understood. This perspective paper proposes an extension to existing network‐oriented IPV support models by integrating a focus on the readiness and well‐being of informal supporters towards the goal of enhancing IPV survivor recovery through effective networks. This paper presents the extended social network‐oriented support model, incorporating the Informal Supporter Readiness Inventory. This tool assesses the readiness of informal supporters, incorporating factors, such as normative and individual beliefs about IPV, and context‐specific factors, to enable identification and targeted assistance where needed. Additionally, the proposed model emphasises the importance of supporting the well‐being of informal supporters, who frequently endure elevated levels of stress, anxiety and depression. By integrating these elements, the extended social network‐oriented support model is designed to help professional supporters foster resilient and sustainable support networks for IPV survivors, with potential applicability across various healthcare disciplines. The extended model underscores the necessity of assessing and fostering both the readiness and well‐being of informal supporters to enhance the recovery journey for IPV survivors. [ABSTRACT FROM AUTHOR]

This review aims to consolidate and appraise evidence exploring the caregiver burden of parents of children with mental disorders. A mixed‐studies review structure was adopted and six electronic databases (PubMed, CINAHL, PsycINFO, Embase, Scopus and ProQuest Dissertations and Theses Global) were searched from each database's inception date until September 2023. Thomas & Harden's thematic analysis framework was utilised for data analysis. Twenty‐three studies were included in this review. The results‐based convergent integration method identified an overarching theme titled 'hiding behind the walls on fire, engulfed in chaos: dark and alone', three main themes named 'Invisible scars': role of psychological factors on caregiver burden, navigating through social and economic influences on caregiving burden, and influence of illness‐related variables and nine subthemes. This review highlighted that the parents perceived insufficient support from healthcare providers and a lack of insight regarding their children's medical condition as the primary contributors to the burden experienced. It is imperative for healthcare professionals to collaboratively engage with parental caregivers, offering accessible treatment options for their children with mental disorders and providing comprehensive educational resources to facilitate a profound understanding of their children's mental health conditions. In addition to addressing caregivers' informational needs, the establishment of an integrated support system is advocated, one involving active participation from healthcare professionals, healthcare institutions, community resources, social services and policymakers. This holistic approach could better meet the multifaceted needs of caregivers, encompassing psychosocial, emotional and financial aspects. Trial Registration: International Prospective Register of Systematic Reviews: PROSPERO ID: CRD42022363420 [ABSTRACT FROM AUTHOR]

An integrative review methodology was employed, following PRISMA guidelines and Whittemore and Knafi's method for integrative review. Thus, the review synthesised the findings of empirical literature published between 2005 and 2023 drawn from four databases: CINAHL, MEDLINE, PsycINFO and Scopus. From the seven studies that met the inclusion criteria, a number of themes emerged: (a) relief of carer burden; (b) benefits for individuals with Mental Illness (MI); (c) barriers to accessing respite care; and (d) inappropriate services model for respite care for individuals with MI. The review findings indicate that using respite care services can decrease a carer's burden and can positively impact both carers and individuals with MI. Conversely, respite care may cause an increase in carers' stress levels due to the lack of service availability, insufficient knowledge and understanding about respite care services for carers, respite accessibility challenges accessible for people with MI and the reluctance of people with MI to accept respite care. [ABSTRACT FROM AUTHOR]

Family caregivers living with patients with dementia (PwD) face psychological challenges due to care burden. Technology‐delivered psychosocial interventions (TPIs) have played a promising role in improving health outcomes among family caregivers living with PwD. This review aims to synthesise evidence of the effectiveness of TPIs on primary (burden and depression) and secondary outcomes (self‐efficacy, stress and anxiety) for family caregivers living with PwD. Random‐effects meta‐analyses were performed to determine effect size. Using Cochran's Q and I2 tests, statistical heterogeneity was evaluated. Sensitivity, subgroup analyses and meta‐regression were employed to explain statistical heterogeneity. Twenty‐eight trials comprising 4160 family caregivers from eight countries were included. Our meta‐analysis revealed that TPIs resulted in slight reduction in depression, probably resulted in a slight reduction in burden and anxiety and slight increase in self‐efficacy. Subgroup differences were detected in geographical regions (Western Pacific and Southeast Asia) for burden. While there were no significant subgroup differences in other factors, TPIs with preventive function and mobile applications had a more prominent larger effect size. Meta‐regression analysis showed that attrition rate was a significant moderator on depression. Results are limited by the high risk of bias of included trials, which may reduce certainty of evidence. This review suggest TPIs are recommended as an adjunct treatment for alleviating burden and depressive outcomes in healthcare institutions. PROSPERO Registration Number: PROSPERO (CRD42023387962). [ABSTRACT FROM AUTHOR]

Caregiving for children with autism spectrum disorder (ASD) poses significant stress for parents, necessitating an exploration of mitigating factors. This study investigates the interplay between Family Sense of Coherence, Psychological Capital and caregiver stress in this context. A total of 205 caregivers of children with ASD participated in this cross‐sectional study. Data were collected on Family Sense of coherence, Psychological Capital (encompassing hope, resilience, optimism and self‐efficacy) and caregiver stress. Structural equation modelling was employed to test the mediation effect of psychological capital between family sense of coherence and caregiver stress. The results indicated a strong positive correlation between family sense of coherence and all subdomains of psychological capital, with coefficients ranging from 0.541 to 0.610. Conversely, psychological capital demonstrated significant negative correlations with various domains of the Kingstone Caregiver Stress Scale, including caregiving, family issues and financial issues (coefficients from −0.443 to −0.427). Furthermore, family sense of coherence showed a direct negative effect on stress (β = −0.384, p < 0.001). Notably, the study revealed a significant mediating role of psychological capital in the relationship between family sense of coherence and caregiver stress, with an indirect effect of family sense of coherence on stress through psychological capital (β = −0.127). The findings underscore the crucial role of family sense of coherence and psychological capital in enhancing psychological resources and mitigating stress among caregivers of children with ASD. These results suggest that interventions aimed at strengthening family coherence and building psychological capital could be effective strategies in alleviating stress among caregivers of children with ASD. Healthcare professionals should consider incorporating family coherence approaches and psychological capital techniques in their support programs for these caregivers. [ABSTRACT FROM AUTHOR]

Aims: The present study aimed to assess parental/caregiver satisfaction with a Neonatal Hearing screening program and determine the levels of parental/caregiver stress and anxiety at the time of hearing screening/ rescreening. Materials & Methods: A cross-sectional study design was adapted to collect data for the current study. The study was conducted in two phases, where phase one included the development of the questionnaire and its validation, and phase two included data collection and statistical analysis. Results: The questionnaires on parental anxiety and satisfaction with the NHS were administered to 119 participants. These included 65 parents (53.8% mothers and 0.8% fathers) and 54 caregivers (45.3%). 85% of the participants were satisfied by the overall NHS program. More than 80% of participants were satisfied with the information and instructions provided and found it adequate and clear. 60% of participants disagreed that they were tensed. Participants expressed that they would have wanted a chance to ask for more details about the test procedures (85.7%) and results (81.5%). Conclusion: The present study provides valuable information related to maternal/caregiver anxiety and satisfaction related to NHS. There is a need for developing better evidence-based materials and training resources in multiple languages for better dissemination of information and enable timely follow-up. [ABSTRACT FROM AUTHOR]

Aims: Caregiver diabetes distress (DD) consists of feeling overwhelmed, sad, and/or concerned; one‐third of parents of youth with type 1 diabetes (T1D) report severe distress up to 4 years after T1D diagnosis. PAID‐PR (Problem Areas in Diabetes Survey—Parent Revised) assesses DD primarily in research settings; however, less is known about its clinical utility. We aimed to identify the feasibility of implementing PAID‐PR screening at a diverse, academic US paediatric diabetes center during routine clinic follow‐up visits through quality improvement methodologies. Methods: The PAID‐PR was intended to be offered in English to caregivers at all paediatric T1D appointments, by the front desk during appointment check‐in, or through REDCap prior to telehealth appointments or at local sites to all eligible caregivers. Adult psychosocial resources were provided to all, regardless of score. Forms were scored after appointments; scores ≥80 were referred to Diabetes Psychology providers for follow‐up. Results: A total of 391 caregivers completed the PAID‐PR, though only half of eligible caregivers received it in person. Response rates were highest in person (90%), compared to REDCap (25%). In total, 27% (n = 107) scored ≥56 (DD). Of those with DD, 21% (n = 23) scored ≥80 and were referred to psychology. Demographics are reported in Table 1. PAID‐PR score was positively correlated to A1c (p = 0.038) and inversely to child age (p = 0.014). Conclusion: Clinic caregiver DD screening was implemented with higher response rates in person; however, expanding in‐person screening to all eligible caregivers is necessary. Furthermore, since the PAID‐PR was in English, some caregivers with DD were likely missed. Future directions include screening in additional languages. [ABSTRACT FROM AUTHOR]

Background and purpose: Health care resource utilization (HCRU) and the economic burden of myasthenia gravis (MG) are significant, but existing studies rarely include comprehensive nationwide data. We examined HCRU and direct and indirect costs associated with MG overall and by disease severity in Denmark, Finland, and Sweden. Methods: Data were collected retrospectively from nationwide health and social care registries. All individuals ≥18 years of age with ≥2 International Classification of Diseases diagnoses of MG between 2000 and 2020 were included. HCRU, direct (inpatient and outpatient contacts, medication) and indirect costs (early retirement, sick leave, death), and associated factors were calculated. Results: The full study cohort comprised 8622 people with MG (pwMG). Mean annual numbers of all‐cause secondary health care contacts for pwMG were 3.4 (SD = 8.3), 7.0 (SD = 12.3), and 2.9 (SD = 3.9), with mean annual total costs of €12,185, €9036, and €5997 per person in Denmark, Finland, and Sweden, respectively. Inpatient periods, involving 77%–89% of study participants in the three countries, contributed most to direct costs, whereas the majority of indirect costs resulted from early retirement in Denmark and Finland, and sick leave periods in Sweden. Mean annual total costs were highest with very severe MG (€19,570–€33,495 per person across the three countries). Female sex and comorbidities, such as mental and behavioral disorders and severe infections, were also associated with higher total costs. Conclusions: This population‐based study shows a high level of HCRU and a significant direct and indirect economic burden of MG across three Nordic countries, especially for severe forms of MG. [ABSTRACT FROM AUTHOR]

The present study explored the role race-related barriers and practical barriers to treatment participation play in treatment effectiveness and satisfaction among Black families with autistic youth using a mixed-method approach. In a sample of Black caregivers with autistic youth (N = 101), multiple regressions were conducted to examine the impact of reported racial and practical barriers on parental stress, treatment effectiveness, and treatment satisfaction. Caregivers provided further narratives on their experience navigating diagnostic and treatment services in qualitative interviews. The study demonstrated that Black caregivers of autistic youth are still encountering several racial and logistical barriers when seeking treatment and diagnostic services for their children. These barriers negatively impact caregiver stress and caregiver perceived treatment quality. Contrary to the barriers and stress experienced by Black caregivers, caregivers are generally satisfied with the treatments they are utilizing and find them helpful. The narratives told by caregivers further elucidate the tumultuous experiences of Black caregivers as they seek diagnostic and treatment services for their children. An experience that may be worsened by family, professional, and systemic barriers, and can be improved by advocacy, acceptance, peer and community support, and increased knowledge. Black families of autistic youth call for increased compassion, support, training, and humility among professionals who serve autistic youth. [ABSTRACT FROM AUTHOR]

Caring for children with different developmental trajectories brings various challenges, which are often exacerbated in low-resource settings. International research has shown that raising a child with autism strongly impacts family caregivers, particularly mothers. There is a dearth of information regarding caregiving for individuals with autism in the Kurdistan Region of Iraq (KRI) and for fathers as well as mothers. This study examined the similarities and differences in caregiving for mothers and fathers of a child with autism in KRI using validated rating scales to measure various aspects of their general well-being. Over two years, a sample of 118 parents of individuals with autism (81 mothers and 37 fathers) self-completed the rating scales, which were further discussed through individual interviews with service personnel mainly known to them. The findings indicated that mothers and fathers were similarly impacted. Although there were no statistically significant differences in the ratings of their general health, sources of stress, family functioning, and satisfaction with caregiving, the majority of parents had elevated ratings on all the measures. In addition, parents who rated their children higher on the Aberrant Behavior Checklist had significantly higher scores on their general health issues and were less satisfied with their caregiving role. Parents of female individuals with autism were also significantly more stressed compared to the male individuals with autism and parents of children who received a diagnosis before three years of age, reported fewer behavioral problems with their child compared to the parents who received a diagnosis when the child was older. In this sample, mothers and fathers seem to be similarly impacted by caring for a child with autism, which is contrary to findings from other countries. However, in this region, family bonds between couples and the wider family may have had an influence which further cross-cultural research in low-resource settings could help elucidate, notwithstanding the challenges this poses. The findings have policy implications for health authorities in the KRI to improve the support provided to both mothers and fathers who care for children with autism, which presently is rarely available to them. [ABSTRACT FROM AUTHOR]

Aim: To investigate the social capital of families with children with neurodevelopmental disabilities in South India receiving a community‐based early intervention (Enabling Inclusion®) program and to explore determinants and associations between social capital and program duration, socio‐demographic factors, family empowerment, and caregiver burden. Method: Using purposive sampling in a cross‐sectional study design, 217 families (n = 71 received short Enabling Inclusion [<5 months]; n = 146 received long Enabling Inclusion [>9 months]) were recruited and completed the Short Adapted Social Capital Tool (SASCAT: cognitive, structural), measures of family empowerment, and caregiver strain. Descriptive statistics, regression, and correlations were used for analyses. Results: In 52.1% of participants, low cognitive and structural social capital was observed. Higher odds of low structural social capital were observed for mothers with primary versus secondary education (adjusted odds ratio [OR] = 0.35; 95% confidence interval [CI] 0.13–0.90; p = 0.029); and caregivers of children with cerebral palsy versus autism (OR = 4.66; 95% CI 1.02–21.21; p = 0.046). Significant associations were found between structural social capital, the child's age, and support group membership (χ2 = 6.29; 4.70; degrees of freedom [df] = 2; 1; p = 0.04; p = 0.02 respectively), as well as between cognitive social capital and other disability in the family (χ2 = 4.62, df = 1, p = 0.03). Interpretation: While program duration was not found to mediate social capital, mother's education and child's diagnosis emerged as key influential factors, warranting their consideration in interventions supporting families of children with neurodevelopmental disabilities in low‐ and‐middle‐income countries and elsewhere. [ABSTRACT FROM AUTHOR]

Purpose: In this review, we aim to determine the efficacy of Solution-Focused Interventions (SFI) among caregivers of persons living with different conditions. Method: Articles published between 1 January 2000 and 31 December 2022 were used. Databases used included EBSCOhost, PubMed, ProQuest, ERIC, and Google Scholar. We used Zotero to remove the duplicate studies. Further, we used the Risk of Bias for RCTs and the JBI Critical Appraisal Checklist for Quasi-Experimental and non-randomized experimental studies. Results: Total number of studies from five databases was 2,693. After evaluating the eligibility and duplication removal, 10 relevant articles were found suitable for this review, including 3 RCTs, 3 single group pre-post, 2 quasi-experimental, and 1 each from case study, and multiple baseline designs. Stress, quality of life, and coping variables were studied. Studies compared with alternative treatments: Though 9 out of 10 studies were superior to alternative treatment, and none were equivalent to solution-focused intervention. SFI has shown efficacy on all the variables selected in the study. In these studies, the efficacy is compared with the alternative treatment, and SFI has demonstrated better outcomes than the alternative treatments. Conclusion: Based on the studies reviewed, robust evidence supports SFI as a treatment approach for caregivers. SFI can also benefit caregivers in shorter sessions, making it more affordable than other treatments. [ABSTRACT FROM AUTHOR]

Aim: To explore the trend of burden and care quality of chronic kidney disease due to type 2 diabetes mellitus (CKD‐T2DM) and their cross‐country inequalities from 1990 to 2021. Materials and Methods: Data were from the Global Burden of Disease 2021 study. Disease burden and care quality were quantified using the disability‐adjusted life years rate and the quality‐of‐care index (QCI). Trend analyses of the age‐standardized disability‐adjusted life years rate (ASDR) and age‐standardized QCI from 1990 to 2021 were conducted using the estimated annual percentage change. The associations of disease burden and care quality with the socio‐demographic index (SDI) were explored. Cross‐country inequalities in disease burden and care quality were assessed using the slope index of inequality (SII) and concentration index. Results: From 1990 to 2021, the global ASDR for CKD‐T2DM increased, while the age‐standardized QCI slightly decreased, with an estimated annual percentage change of 0.81 [95% confidence interval (CI): 0.75, 0.87] and −0.08 (95% CI: −0.09, −0.07). The ASDR escalated with increasing SDI, reaching a peak at mid‐level SDI, followed by a decrease. The age‐standardized QCI was higher with increasing SDI. Globally, ASDR concentrated on countries/territories with a lower SDI. The SII of ASDR was −96.64 (95% CI: −136.94, −56.35) in 1990 and −118.15 (95% CI: −166.36, −69.94) in 2021, with a concentration index of −0.1298 (95% CI: −0.1904, −0.0692) in 1990 and −0.1104 (95% CI: −0.1819, −0.0389) in 2021. In 1990 and 2021, countries/territories at higher SDI levels exhibited increased age‐standardized QCI, indicated by an SII of 15.09 (95% CI: 10.74, 19.45) and 15.75 (95% CI: 10.92, 20.59), and a concentration index of 0.0393 (95% CI: 0.0283, 0.0503) and 0.0400 (95% CI: 0.0264, 0.0536). Conclusions: Our study highlights considerable disparities in the burden and care quality of CKD‐T2DM. Regions experiencing an increasing burden and a declining care quality simultaneously underscore the need for further research and tailored health interventions. [ABSTRACT FROM AUTHOR]

Previous research has shown that informal caregiver burden can have deleterious effects on patient recovery; however, this relationship has yet to be investigated in patients undergoing coronary artery bypass graft (CABG) surgery. This study aimed to examine the impact of the change of caregiver burden from pre- to post-surgery on patients' mental and physical health after CABG surgery. Ninety patient-caregiver dyads were assessed one month before the surgery, two months and one year after the surgery. Caregivers completed the Oberst Burden Scale to measure caregiver burden. Patients completed the Beck Depression Inventory to measure depressive symptoms, a subscale of the Hospital Anxiety and Depression Scale to measure anxiety symptoms, the Short Form-12 health assessment to measure health-related quality of life, and the Coronary Revascularisation Outcomes Questionnaire to measure surgery symptoms. Hierarchical linear regression analyses were conducted to explore the association between change in caregiver burden and post-surgery patient outcomes. A greater increase in caregiver burden from pre- to two-months post-surgery significantly predicted higher patients' depressive symptoms (β = 0.179, p = 0.010), anxiety symptoms (β = 0.114, p = 0.017), reported post-surgery symptoms (β = 0.335, p = 0.008) and reduced physical health-related quality of life (β = -0.358, p = 0.003), after controlling for a wide range of covariates. These findings were not replicated at a one-year follow-up. These results provide insights into the impact of caregiver burden on patient distress following CABG surgery, supporting the idea of psychological support interventions for caregivers to increase patients' short-term recovery outcomes. [ABSTRACT FROM AUTHOR]

Oftentimes, older adults experience a decline in health as they age. In Nigeria and other African countries, caregiving for older adults is usually a filial responsibility. With the decline in health and increasing demand for care, family members often require the assistance of paid informal caregivers. These are unskilled workers, extended relations and personal care attendants who shoulder the responsibility of providing services to older adults whose family members are not able to provide regular caregiving. This study explored paid informal caregivers' management of older adults' health demands and its implication for social work professionals in contemporary Nigerian society. The study employed a qualitative research method. Focus Group discussions (FGDs) were utilized to elicit data from 48 participants residing in Enugu State, Nigeria. Data was coded into parent and child notes. An inductive coding approach was adopted to provide meaning to the coded data as we studied the transcripts. Codes with similar characteristics were grouped thematically. We found that various challenges experienced by paid informal caregivers in the management of older adults' health demands were gender preference, age, health status of older adults and low financial reward. The reward received is not commensurate with the provided services and so they experience burden, stress and unsatisfied life. It was also found that paid informal caregivers adopt inadequate coping strategies and have no knowledge of health apparatus utilized in care management, owing to lagging care support. It is essential to revitalize the traditional community-based care system since care for older adults is gradually eroding to paid informal caregivers in contemporary Nigerian society. This is a clear indication that care for older adults is threatened. There is a need for social work professionals to work in collaboration with families and caregivers in various community settings. Overall, adequate health policy consideration should be given to all older adults in Nigeria. [ABSTRACT FROM AUTHOR]

* OBJECTIVE: To examine whether there was a racial disparity among Medicare beneficiaries in the likelihood of using outpatient physical therapy (PT) services following a hip fracture. * METHODS: Our retrospective descriptive cohort study analyzed administrative claims data for 51 781 Medicare beneficiaries post hip fracture. We examined the association between race and PT use within the first 6 months post fracture using hierarchical logistic regression, adjusting for demographics, medical complexity, and socioeconomic factors. We used Poisson regression to examine the association between race and the number of PT visits. * RESULTS: Only 31% of beneficiaries used outpatient PT after hip fracture with significant racial disparities. After controlling for demographics, medical complexity, and socioeconomic factors, Black beneficiaries had 42% lower odds of using PT (adjusted odds ratio [aOR], 0.58; 95% confidence interval [CI]: 0.51, 0.66) compared to White beneficiaries. Among PT users, Black beneficiaries received fewer visits than White beneficiaries (rate ratio [RR], 0.85; 95% CI: 0.82, 0.88) with this disparity persisting after adjustments (RR, 0.88; 95% CI: 0.85, 0.91). * CONCLUSION: Even after adjusting for demographic, medical, and socioeconomic factors, Black beneficiaries were less likely to use outpatient PT following hip fractures. Conditional on an initial PT evaluation, Black beneficiaries received fewer sessions. J Orthop Sports Phys Ther [ABSTRACT FROM AUTHOR]

Objectives: This study examined (1) the association of caregiver engagement in physical activity (PA) with their quality of life (QoL) and (2) the moderating effect of caregiver engagement in PA on the relationship between several caregiving stressors and their QoL, among informal caregivers of older adults. Methods: Multivariable regression was applied to data from 278 adult caregivers, aged 23–90 years, in Singapore. Results: Engagement in PA by caregivers was positively associated with psychological, social relationships, and environment domains of their QoL. Caregiver engagement in PA also mitigated the negative association between care-recipient mood impairment and QoL of caregivers in the physical health and social relationships domains. Discussion: QoL of caregivers may be improved or protected by their regular engagement in PA, especially when their care-recipients have mood impairment. Policymakers and practitioners should encourage caregivers to engage in PA and provide them with the necessary support to do so. [ABSTRACT FROM AUTHOR]

Introduction: Myelodysplastic syndromes (MDS) are characterized by bone marrow failure, peripheral blood cytopenias and a high risk of progression to acute myeloid leukemia (AML), which is associated with a poor prognosis and low survival rates. This study combined surveys with patient chart reviews to document real-world clinical practice and burden of MDS, including perspectives of physicians, patients and caregivers and underlying discrepancies. Methods: Physicians in major European countries and the US provided information on 1445 patients, stratified into lower- (LR) and higher-risk (HR) MDS. Patients had the opportunity to complete questionnaires describing the impact of MDS. Caregivers had the option to report on the burden of caring for a patient with MDS. Results: While supportive treatment was common, mainly with erythropoietins (52%), anti-AML agents were more frequently used in HR than in LR patients (70% vs 20%), while HR patients generally received more transfusions (48% vs 36%). Symptoms with the largest discordance between patient vs physician reporting were excessive bruising (30% vs 14%), GI side effects (19% vs 6%) and feeling tired or fatigued (68% vs 56%). A bigger impact of fatigue was reported on the European Organization for the Research and Treatment of Cancer Quality of Life questionnaire (EORTC QLQ-C30) for HR vs LR patients (43.2 vs 36.5 on a scale from 0 to 100). There was discordance between caregivers vs physicians on reporting of weekly caregiver hours (45.4 vs 29.2) with a Zarit Burden Interview score (ZBI, score 0–88) of 25.4. Conclusions: Patients reported a higher frequency than their physicians of top symptoms, with MDS-related disruptions in daily life for both patients and caregivers. There is a need for new therapeutic strategies, along with shared understanding and decision making among patients, caregivers and physicians, to optimize disease management and improve quality of life in people living with MDS. [ABSTRACT FROM AUTHOR]

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Developmental disabilities (DDs) that occur in early childhood can have long-lasting effects on an individual's daily functioning. This paper emphasises the need for interventions for children with DDs and their families, as parents of children with DDs may experience high levels of strain and mental health symptoms. However, there is a lack of research on the impact of caregiver burden on Korean parents of children with DDs. Analyses were conducted to examine the mediating effects of mental health symptoms and social participation on the relationship between caregiver burden and quality of life (QoL). The results indicate that caregiver strain has a negative effect on QoL, and parental mental health symptoms and social participation mediate this relationship. The findings provide insights for practitioners in social work and special education involved with Korean parents of children with DDs and highlight the support systems needed to enhance their wellbeing. [ABSTRACT FROM AUTHOR]

This article reviews the literature on mothers of victims and mothers of offenders through a feminist criminological lens. Results of our analysis of 52 articles from a twenty-year period indicated that, though situated on opposite sides of the criminal justice system, aspects of the experiences of mothers of victims and offenders were similar. Specifically, the mothers shared perceived accountability for their offspring's involvement in crime, the burden of care for their offspring, and the negotiation strategies they employed. Our analysis makes visible these mothers as a unique sub-category in the study of crime and proposes a matricentric feminist criminology model. [ABSTRACT FROM AUTHOR]

Background: This study aimed to elucidate the sense of burden and the factors that affect medication assistance among family caregivers who provide long-term care to elderly patients with dementia. Methods: Survey method: A sample size of 96 was predetermined, and a web-based survey was conducted to caregivers who met the qualifying criteria. The survey encompassed following components: (1) assessment of burden, (2) determination of difficulty during medication assistance, (3) evaluation of comprehension of medication purposes, (4) evaluation of caregiver's ability to recall administration method, (5) measurement of satisfaction with current medication, (6) examination of harmony between medication and lifestyle habits, (7) cohabitation status with the patient, (8) quantification of oral medications, (9) determination of medication doses (doses) per day, and (10) estimation of time spent on medication assistance. The respondents were categorized into "high burden" and "low burden" groups, and the distribution of responses for items (2) to (7) was compared between these groups using a chi-square test. Mean responses for items (8) to (10) were compared between the groups using a Student's -t test. Furthermore, multivariate analysis was performed using burden as the target variable, and significant differences identified between the groups using chi-square and Student's t-tests as explanatory variables. The significance level was established at 5%. Results: The study comprised 100 respondents, 90% of whom offered medication assistance. Among the caregivers, 38.9% reported experiencing burden, 56.7% faced challenges with medication assistance, and 36.6% faced medication refusal. Additionally, 15.5% of participants experienced disharmony between their medication and lifestyle. The multivariate analysis results highlighted associations between burden and factors such as the presence/absence of difficulty in medication assistance, number of doses per day, medication refusal, and level of harmony between medication and lifestyle. Conclusion: The burden was influenced by various factors indicating "difficulty." The study highlighted the importance of simplifying medication usage by reducing the number of doses, addressing medication refusal through third-party intervention, and customizing assistance to individual needs based on the psychological conditions of patients and caregivers. These approaches aim to alleviate disharmony between medication and lifestyle. [ABSTRACT FROM AUTHOR]

In this paper, we present a qualitative meta‐ethnographic synthesis of 26 articles reporting experiences of subjective burden in 389 parents of children with mental illnesses. The studies were identified through a systematic literature search of PubMed, CINAHL Ultimate, APA PsycInfo, and MedLine Ultimate. We conducted a quality appraisal and followed the seven stages of meta‐ethnographic synthesis. We developed a line of argument synthesis in the form of a model that depicts the subjective, temporal, and psychological experiences of parents. The model proposes a cyclical process characterized by five stages, each depicting a transitional point in which parents re‐evaluate their experiences: caring for an intimate stranger; turning point; unavoidable role; uncertain future; transcendence. This model highlights the complex psychological processes that parents endure when caring for a child with a mental illness. The review highlights several methodological issues in this field of research, including issues related to sampling, poor reporting of data analysis, limited critical appraisal, and a lack of reflexivity. Future research should address the gaps in the literature while also attending to the issues that have been highlighted by this review. [ABSTRACT FROM AUTHOR]

Objectives: This cross‐sectional study aimed to assess the quality of life (QOL) and chronic disease prevalence among 265 individuals over the age of 60. Methods: Utilizing the quality‐of‐life index (QLI), data were collected through an online questionnaire from eligible participants, not mentally disabled. Results: Significant variations in chronic conditions were found based on marital status, education, employment, and daily activities. QOL declined with age, divorce, unemployment, and dependency on caregivers but improved with a university degree. Living with family positively impacted overall QOL, while older age, unemployment, dependency, hypertension, and kidney disease were associated with lower QOL scores across various domains. Conclusion: Sociodemographic factors and chronic conditions had pivotal role in shaping the QOL for individuals over the age of 60, emphasizing the importance of targeted interventions for improved well‐being in this population. [ABSTRACT FROM AUTHOR]

ABSTRACT Aims Design Methods Results Conclusions Relevance to Clinical Practice Impact No Patient or Public Contribution This study identifies instruments for assessing the burden on family caregivers of cancer patients and evaluates their psychometric properties using COSMIN criteria.A systematic review based on COSMIN methodology.The review adhered to PRISMA guidelines. Relevant studies were identified through searches in PubMed, Web of Science, Cochrane Library, Embase, China National Knowledge Infrastructure, Wanfang Database, and China Science and Technology Journal Database, covering literature from inception to September 2024. Included studies focused on developing or validating measurement tools and assessing psychometric properties such as reliability, internal consistency and construct validity. Two independent researchers screened the literature, extracted data and evaluated psychometric properties using COSMIN criteria while assessing evidence quality via the GRADE method.A total of 32 studies were included, encompassing 17 tools for assessing caregiver burden. None reported measurement error, cross‐cultural validity or responsiveness. The Caregiver's Burden Scale in End‐of‐Life Care (CBS‐EOLC) demonstrated strong reliability, validity and internal consistency, receiving a strong recommendation for clinical practice. In contrast, the Zarit Burden Interview (ZBI), Family Caregiver Burden Interview Scale (FBIS) and Bakas Caregiving Outcomes Scale (BCOS) are not recommended due to insufficient supporting evidence. Other tools showed weak evidence, leading to weak recommendations.The CBS‐EOLC exhibits comprehensive psychometric properties suitable for clinical applications. The ZBI, FBIS and BCOS lack adequate supporting evidence and are not recommended. Future research should focus on measurement error, cross‐cultural validity and responsiveness to enhance these tools' applicability and reliability.This review provides evidence for healthcare providers to select instruments for assessing caregiver burden in cancer patients.This systematic review highlights the need for comprehensive assessments of caregiver burden based on COSMIN guidelines.This study is a systematic review with no patient or public participation. [ABSTRACT FROM AUTHOR]

AbstractNegative aspects of caregiving, including stress and burden, have dominated research. However, there has been a growing awareness of the need to examine the positive and rewarding aspects of caregiving for older adults. This paper will describe the development and pilot testing of a measure that examines the Positive and Enjoyable Aspects of the Caregiving Experience (PEACE). Forty-five caregivers of older adults were recruited from two hospitals within a large regional health system and studied at three points in time. Data were examined only at the second phase of data collection within this study (n = 29). Correlations were used to examine the relationship between positive and enjoyable aspects of caregiving constructs and validated tools. Analysis found high internal reliability (α = 0.82) for a novel measure developed and tested in this study, entitled, the PEACE. Convergent validity was demonstrated by significant positive correlations between the PEACE and quality of life and social support. Divergent validity was found between the PEACE and caregiver burden. This novel measure has the potential for a more holistic assessment of the caregivers’ experiences, which offers implications for service provision and program development. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Introduction: Rural informal caregivers (IC) experience major financial and economic constraints in caring for their older family members. Rurality combined with increased caregiving demands and intensity, poor economic opportunities, and limited financial resources and policies create multiple financial stressors and can lead to poor financial well-being. A cross-sectional survey was conducted to understand how caregiving demands, intensity, and duration impact the subjective financial well-being of rural caregivers of older adults. Methods: Informal caregivers (N = 196) residing in 12 rural counties in the central North Region of the Midwestern US participated in the survey. Ordinary Least Squares and Linear Probability Model regressions were conducted to measure the association among the study variables. Results: Our findings showed a moderate level of subjective financial well-being among informal caregivers (average = 51.62; SD 14.52). Caregiving intensity negatively affected financial well-being (β = −1.470, p < 0.05). More than half of informal caregivers (58%) were not satisfied with their household income, and 30% found it difficult to meet their family's needs with their current income status. Discussion and Conclusions: Longer hours of care are associated with financial burden and insecurity and can significantly influence the financial health and well-being of rural informal caregivers of older adults. Older caregivers were found to manage their financial constraints more effectively. Future comparative and longitudinal studies with a more diverse sample are required to infer long-term interactions among the different variables in this study. [ABSTRACT FROM AUTHOR]

BackgroundAimMethods & ProceduresOutcomes & ResultsConclusionsIntensive Comprehensive Aphasia Programs (ICAPs) are a new model of service delivery that show promising pre-post outcomes but have yet to be compared with usual care.To compare the clinical effectiveness of a modified Intensive Comprehensive Aphasia Program (mICAP) to usual care in a parallel two arm study utilizing stratified block randomisation.Participants were a referred sample with post stroke aphasia from ten local speech pathology departments. Assessments were completed prior to, immediately after, and follow up at 3 months after the mICAP. While 269 participants with aphasia were approached for the study, only 52 were eligible to be randomised with 113 participants approached not meeting selection criteria and 99 of eligible participants declining to participate. Block randomization was based on matched moderate/mild versus severe aphasia pairs. Three of the 26 mICAP participants withdrew. In the experimental arm of the mICAP (the LIFT program), participants with aphasia and their family attended goal directed tailored therapy three times weekly for 8 weeks. Therapy included 14 hours each of impairment therapy, functional communication therapy, and computer therapy and 7 hours of group therapy and a challenge task. The main outcome measures were the self-reported Assessment for Living with Aphasia (ALA) and Content Information Units (#CIU’s) in connected speech.Linear Mixed Modelling was completed on the remaining 42 participants’ data and found a significant benefit for the mICAP on the ALA Total score (p= .014; 95% CI= −21.48- −2.57) ALA Aphasia domain (p = .027; 95% CI= −3.23 - −0.203), ALA Environment domain (p = .017; 95% CI= −4.70 - −0.493) immediately post intervention with maintenance of effects for the ALA Aphasia domain in the follow up period (p = .014; 95% CI= −3.64 - −0.438). Family members in the mICAP reported significant reduction in caregiving burden in the follow up period (p= .017; CI= −14.12 - −1.52.). There were no significant differences on the other main outcome measure of Content Information Units (95% CI= −34.94 – 55.15).For those suitable and interested, the mICAP was more beneficial than usual care for participants with aphasia and their family members. However, lack of significant differences in discourse and other language functions, suggests that individual elements of mICAPs and their evaluation require review. Based on these results, the LIFT program has been refined to become the Comprehensive High-dose Aphasia Therapy (CHAT) program. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Children with chronic illnesses pose a significant burden on parents who are directly involved in caregiving. Despite the high prevalence of chronic illnesses among children in Saudi Arabia, no study has examined caregiver burden and other related factors in the Saudi Population. Thus, this study determined the levels of caregiver burden, perceived social support, and perceived stress and their association among parents who provide care to their child with a chronic illness. Methods: A cross-sectional design was used for this study. Data were collected through an online survey using standardized scales from parents who had at least one child suffering from a chronic illness or disability for more than 12 months and requiring continuous medical treatment. Results: A total of 206 parents reported mild-to-moderate levels of caregiver burden, moderate levels of perceived stress, and high levels of perceived social support. Furthermore, perceived social support was significantly correlated with caregiver burden (rho = − 0.36, p < 0.01) and perceived stress (rho = − 0.45, p < 0.01), and caregiver burden was significantly associated with perceived stress (rho = 0.65, p < 0.01). Conclusions: Study findings suggest that social support could play a pivotal role in designing intervention programs to mitigate the stress caused by the caregiver burden. This insight underscores the urgent need for policymakers to develop psychosocial interventions and targeted programs for caregivers of children with chronic illnesses. [ABSTRACT FROM AUTHOR]