Place-based, intersectional variation in caregiving patterns and health outcomes among informal caregivers in the United States.

Introduction: Informal caregiving is a critical component of the healthcare system despite numerous impacts on informal caregivers' health and well-being. Racial and gender disparities in caregiving duties and health outcomes are well documented. Place-based factors, such as neighborhood conditions and rural-urban status, are increasingly being recognized as promoting and moderating health disparities. However, the potential for place-based factors to interact with racial and gender disparities as they relate to caregiving attributes jointly and differentially is not well established. Therefore, the primary objective of this study was to jointly assess the variability in caregiver health and aspects of the caregiving experience by race/ethnicity, sex, and rural-urban status. Methods: The study is a secondary analysis of data from the 2021 and 2022 Behavioral Risk Factor Surveillance System (BRFSS) from the Centers for Disease Control and Prevention. Multivariable logistic regression or Poisson regression models assessed differences in caregiver attributes and health measures by demographic group categorized by race/ethnicity, sex, and rural-urban status. Results: Respondents from rural counties were significantly more likely to report poor or fair health (23.2% vs. 18.5%), have obesity (41.5% vs. 37.1%), and have a higher average number of comorbidities than urban caregivers. Overall, rural Black male caregivers were 43% more likely to report poor or fair health than White male caregivers (OR 1.43, 95% CI 1.21, 1.69). Urban female caregivers across all racial groups had a significantly higher likelihood of providing care to someone with Alzheimer's disease than rural White males (p < 0.001). Additionally, there were nuanced patterns of caregiving attributes across race/ethnicity*sex*rural-urban status subgroups, particularly concerning caregiving intensity and length of caregiving. Discussion: Study findings emphasize the need to develop and implement tailored approaches to mitigate caregiver burden and address the nuanced needs of a diverse population of caregivers.

Fostering social health of people with dementia: evaluation of the Razem przed siebie dementia awareness campaign in Poland.

Background: Due to the need to increase social awareness about dementia and the needs of patients living with dementia in Poland, the Razem przed siebie (eng. Forward with Dementia) campaign was created. The aim of the study was to evaluate its effectiveness. Methods: To disseminate key campaign messages to the target audiences (people with dementia, carers, health and social care professionals [HSCP] and general public) a website, social and traditional media promotions, webinars and social activities were created. The campaign ran between September 2021 and April 2022. Mixed methods (online survey, reach estimates and interviews) were used to evaluate the campaign. Results: Almost 1,300 people visited the website during the campaign period. Of these, 55 carers and HSCP responded to the online survey. The most read section of the website was Understanding the diagnosis (carers [56% of 25] and HSCP [80% out of 30]). The website was mostly accessed by carers (68%) and HSCP (66.7%) through word-of-mouth recommendations. 80% carers and 90% HSCP found the website very or extremely helpful. Over 90% of carers and HSCP expressed an intention to revisit the website. Based on 31 interviews, campaign effects, change mechanisms and limitations were identified. Campaign events elicited positive emotions among people with dementia, providing them with a feeling of belonging and engagement. Esteeming personal interactions over informational campaign materials, those with dementia felt acknowledged and empowered by the events. Carers also reported positive experiences and increased interest and knowledge, though they expressed disappointment with the lack of respite care, an issue beyond the campaign's scope. HSCP perceived the campaign events positively and identified significant gaps in the dementia care system. Conclusion: Evaluation of the Razem przed siebie campaign revealed successes and limitations. While effectively incorporating anti-stigma campaign recommendations and enhancing social health for individuals with dementia, the campaign clearly showed the pressing need for systemic solutions. Despite positive perception of the campaign, there is a need for a better diagnostic and post-diagnostic support for people with dementia and their carers.

Long-term distress throughout one's life: health-related quality of life, economic and caregiver burden of patients with neurofibromatosis type 1 in China.

Introduction: Neurofibromatosis type 1 (NF1) is a rare genetic disorder, with lack of evidence of disease burden in China. We aimed to describe the economic burden, health-related quality of life (HRQL), and caregiver burden of NF1 patients in China. Methods: We conducted an online cross-sectional survey employing the China Cloud Platform for Rare Diseases, with 223 caregivers of NF1 pediatric patients (patients under 18), and 226 adult patients. Economic burden was estimated using direct and indirect costs related to NF1 in 2021, and the Work Productivity and Activity Impairment Questionnaire: General Health V2.0 (WPAI-GH). HRQL measures included EQ-5D-Y proxy version and PedsQL™ 4.0 Generic Core Scales (PedsQL GCS) proxy version for pediatric patients, and EQ-5D-5L and PedsQL™ 3.0 Neurofibromatosis Module (PedsQL NFM) for adult patients. Caregiver burden was estimated by Zarit Burden Interview (ZBI). Results: For pediatric patients, the average direct cost in 2021 was CNY 33,614 (USD 4,879), and employed caregivers' annual productivity loss was 81 days. EQ-5D-Y utility was 0.880 ± 0.13 and VAS score was 75.38 ± 20.67, with 52.6% patients reporting having problems in "pain/discomfort" and 42.9% in "anxiety/depression." PedsQL GCS total score was 68.47 ± 19.42. ZBI score demonstrated that 39.5% of caregivers had moderate-to-severe or severe burden. For adult patients, average direct cost in 2021 was CNY 24,531 (USD 3,560). Patients in employment reported an absenteeism of 8.5% and presenteeism of 21.6% according to the results of WPAI-GH. EQ-5D-5L utility was 0.843 ± 0.17 and VAS score was 72.32 ± 23.49, with more than half of patients reporting having problems in "pain/discomfort" and "anxiety/depression" dimensions. PedsQL NFM total score was 68.40 ± 15.57. Conclusion: Both pediatric and adult NF1 patients in China had a wide-ranging economic burden and low HRQL, especially in the psychological dimension. Caregivers for NF1 pediatric patients experienced considerable caregiver burden. More attention and support from policymakers and stakeholders are required to relieve NF1 patients' and caregivers' distress.

Understanding facilitators and barriers to oxygen therapy for patients with interstitial lung disease.

BACKGROUND: Interstitial lung disease (ILD) is comprised of a heterogeneous group of pulmonary diseases. Oxygen therapy is used in patients with advanced lung disease; however, there are challenges associated with initiation of oxygen therapy specific to individuals with ILD. The key objectives of this study were to create a common understanding of the facilitators and barriers to oxygen therapy for patients with ILD, and healthcare professionals (HCP) caring for patients with ILD. METHODS: This qualitative study included 1 hour semistructured focus groups/interviews. An iterative and concurrent process was used for data collection and analysis to allow for supplementary development of themes and concepts generated. Data analysis used a three-phase approach: coding, categorising and development of themes. RESULTS: A total of 20 patients and/or caregivers and 31 HCP took part in 34 focus groups/interviews held over 3 months (November 2022-January 2023). Facilitators to oxygen therapy were identified including support from HCP and support groups, the perseverance and self-advocacy of patients, a straightforward administrative process and vendors/private industry that expedite access to oxygen therapy. There were also several barriers to accessing oxygen therapy for patients with ILD. The themes identified include rural disparity, testing requirements and qualifying for funding and the need for ILD-specific evidence base for oxygen therapy. CONCLUSION: Further research is needed to facilitate development of specific exertional oxygen criteria for patients with ILD, to create supports for oxygen use and monitoring and to enable providers to tailor therapy to patients. Oxygen therapy education for ILD should address the benefits and risks of oxygen therapy.

[Current Situation and Influencing Factors of Caregivers' Pressuring Feeding Style in Infants of 6-11 Months Old in Rural Areas of Sichuan Province].

Objective To investigate the status and influencing factors of pressuring feeding style among caregivers in remote rural areas of Sichuan province. Methods Multistage sampling was conducted to select infants of 6-11 months old who had received complementary food and their caregivers in remote rural areas of Sichuan province.A questionnaire was used to collect sociodemographic characteristics of infants and their caregivers,pressuring feeding behaviors,feeding environment,and caregivers' negative emotions.Quantile regression was employed to analyze the factors influencing pressuring feeding among caregivers of infants. Results A total of 1358 pairs of infants and their caregivers were included,with the pressuring feeding behavior score of 11 (8,14).Parity was the protective factor for caregivers' pressuring feeding (ß25=-1.17,P<0.001;ß50=-1.40,P=0.002;ß75=-2.18,P<0.001).Whether infants played with toys while eating (ß25=1.00,P<0.001;ß50=1.20,P=0.003;ß75=1.42,P<0.001) and whether infants watched TV/mobile phones (ß25=0.50,P=0.048;ß50=1.07,P=0.004) were the risk factors.At the 75th percentile,caregivers' negative emotions were the risk factor for pressuring feeding (ß75=0.94,P=0.015).Caregivers' education background (ß25=0.83,P=0.034;ß50=0.87,P=0.021) and family income (ß75=1.09,P=0.012) were also significantly associated with pressuring feeding scores at different quartile points. Conclusion Pressuring feeding behaviors of caregivers in remote rural areas of Sichuan province need to be improved.Based on the characteristics of infants and their families,guidance should be carried out to improve the feeding environment and the mental health of caregivers,thereby promoting reasonable feeding behaviors among caregivers of infants in rural areas.

Sitting in Wait: Everyday Caregiving Practices for People with Dementia in Rural South Africa.

Practice theories offer potential to reveal, understand, and attribute value to the everyday thoughts and actions of dementia caregivers. Drawing on ethnographic data from research in rural South Africa, on everyday dementia care practices, we highlight the profound importance of mundane practices - especially "sitting in wait" - for optimizing wellbeing of people with dementia who are cared for at home. We draw attention to the structural drivers of homebased (informal) care, which is underpinned by state inaction. This situates the act of sitting in wait as both an act of care and an embodied form of structural powerlessness.

Building on and tailoring to: Adapting a cancer caregiver psychoeducational intervention for rural settings.

INTRODUCTION: Rural cancer caregivers experience obstacles in accessing services, obtaining respite, and ensuring their care recipients receive quality care. These challenges warrant opportunities to participate in evidence-based behavioral intervention trials to fill support gaps. Adaptation to rural settings can facilitate appropriate fit, given higher caregiver service needs and unique challenges. We present findings from the adaptation process of a psychoeducational intervention designed to support cancer caregivers in rural settings. METHODS: We adapted Reblin's CARING intervention, designed for neuro-oncology, to target caregivers of rural cancer patients across cancer sites. First, we conducted formative work to determine the unmet social and supportive care needs rural cancer caregivers faced. We used the Framework for Reporting Adaptations and Modifications to Evidence-based Implementation Strategies (FRAME-IS) to guide the modifications. To conduct the adaptation, we elicited feedback through qualitative interviews of seven caregivers and three cancer hospital staff and thematic analysis to inform intervention modifications. Our qualitative study was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). RESULTS: Interviews revealed that service access was a pressing need, along with financial (e.g., treatment costs, employment challenges) and geographic barriers (e.g., distance to treatment, road conditions). We modified content, training, and context using the FRAME-IS steps. Changes enhanced fit through the following adaptations: changes to social support domains, session content, interventionist training, resource offerings, screening and recruitment processes, and virtual delivery. DISCUSSION: Challenges to establishing successful psychosocial oncology interventions may be improved through participant-centered approaches and implementation science. Additional systemic challenges, including lack of systematic documentation of caregivers, persist and may especially disadvantage under-represented and underserved groups, such as rural dwellers. The enCompass intervention is undergoing ongoing single-arm pilot of rural cancer patient/caregiver dyads targeting caregiver coping self-efficacy and patient/caregiver distress (Clinical Trials #NCT05828927).

Examining posttraumatic growth among Turkish family caregivers of cancer patients.

Cancer is a deadly disease that affects millions of people worldwide and is a source of great difficulty, stress, and trauma not only for patients but also for their caregivers. The physical and emotional suffering that patients experience by patients can lead their caregivers to cope with constant anxiety, sadness, and uncertainty. Moreover, during the cancer treatment process, caregivers must make a great effort to meet the needs of patients and support them. This situation may negatively affect the quality of life and psychological health of cancer patients' caregivers and may lead them to experience trauma. The aim of this cross-sectional study was to examine posttraumatic growth's relationship with age, the transformative power of suffering, and hope in family caregivers of cancer patients. Participants consisted of 314 Turkish family caregivers of cancer patients (73.2% women; Mage = 39.89 years) selected by using convenience sampling method. Participants answered a data collection tool consisting of a demographic information form, the Posttraumatic Growth Inventory, Trait Hope Scale, and Transformative Power of Suffering Scale. Data were analyzed using descriptive statistics, the Pearson product-moment correlation coefficient analysis, simple mediation analysis, and moderated mediation analysis. The results of this study revealed that hope mediated the association between the transformative power of suffering and posttraumatic growth in family caregivers of cancer patients, whereas age moderated this relationship. Psychosocial support programs for cancer caregivers could benefit from incorporating interventions that explore the transformative potential of suffering and cultivate hope. Tailoring these interventions to address the specific needs of different age groups may enhance their effectiveness. Future researchers should investigate the factors associated with posttraumatic growth in caregivers across diverse cultures, age ranges, and cancer diagnoses.

Can formal home and community-based care substitute informal care? Evidence from Chinese Longitudinal Healthy Longevity Survey.

BACKGROUND: Formal home and community-based care are often considered as the preferable option to institutional care, offering older individuals the convenience of receiving care in their homes. Although research has found that these services may alleviate the burden on informal caregivers, there is a lack of research on which specific types of formal home and community-based care influence informal care provision. METHODS: Employing fixed-effects and quantile regression models, this study seeks to explore the effects that various formal home and community-based care services have on reducing the burden of informal care. This study draws data from the Chinese Longitudinal Healthy Longevity Survey 2005, 2008, 2011, 2014, and 2018. RESULTS: Our findings indicate that two types of formal care substantially influence the provision of informal care. The availability of daily living assistance services correlates with reduced informal caregiving hours, especially for those with extensive care needs. The availability of community-based health care services is linked to a reduction in the direct expenses incurred from informal caregiving, especially for those incurring greater direct caregiving costs. These effects are more prominent among urban residents. Other services, such as mental health support and legal advice services, do not demonstrate significant effects on reducing informal care hours and costs. CONCLUSIONS: Daily living assistance and community-based health care services play a crucial role in benefiting informal caregivers. It is important to prioritize the expansion of these services, especially among those with greater care needs.

Care burden and associated factors among caregivers of patients with bipolar type I disorder.

BACKGROUND: Family caregivers play a significant role in providing care for these people at home and need new evidence on the outcomes of their caregiving. Caregiving for people with chronic psychiatric disorders, especially Bipolar type I Disorder (BD-I), is a major challenge in the healthcare system. This study aimed to examine the relationship between caregiver burden, resilience and optimism in family caregivers of patients with BD-I. METHODS: This study used a cross-sectional design and involved 209 family caregivers of people with BD-I by convenience sampling method. Data were collected using the Zarit Burden Inventory (ZBI), Connor-Davidson Resilience Scale (CD-RISC), and Revised Life Orientation Test (LOT-R). The participants were selected from the list of family caregivers covered by the Ibn Sina Hospital's health clinic in Mashhad, Iran. The data were analyzed using descriptive statistics and multiple regression analysis with a significance level of 0.05. RESULTS: The average ages of the caregivers and their patients were 45.43 (13.34) and 36.7 (14.05), respectively. The average caregiver burden score was 41.92 (19.18), which was moderate (31 to 60). The predictors of caregiver burden in this study were caregiver-related factors such as optimism (p < 0.001, ß = 0.25) and employment status (housewife: p = 0.038, ß = 0.43; self-employed: p = 0.007, ß = 0.12; retired: p < 0.001, ß = 0.23), and patient-related factors such as the presence of psychotic symptoms (p < 0.001, ß = 0.33), daily caregiving hours (p < 0.001, ß = 0.16), history of suicide attempts (p = 0.035, ß = 0.43), and alcohol consumption (p < 0.001, ß = 0.85). These variables explained 58.3% of the variance in caregiver burden scores. CONCLUSION: The study concluded that family caregivers of people with BD-I had moderate levels of caregiver burden and low resilience, influenced by various factors related to themselves and their patients. Psychological education interventions within the framework of mental health support systems are recommended to reduce caregiver burden in these people.

Knowledge, attitudes, and practices of family caregivers for patients with cerebral infarction toward home-based care.

Objective: This study aimed to assess the knowledge, attitudes, and practices (KAP) among family caregivers of patients with cerebral infarction toward home-based care. Methods: This web-based cross-sectional study was conducted between October 2023 and February 2024 at Yancheng Third People's Hospital. A self-designed questionnaire was developed to collect demographic information, and assess the KAP among family caregivers of patients with cerebral infarction toward home-based care. Results: A total of 761 questionnaires were included in the study. Among the participants, 453 (59.53%) were female, and 548 (72.01%) lived with the patients. The mean knowledge, attitudes and practices scores were 6.67 ± 1.73 (possible range: 0-9), 32.95 ± 2.46 (possible range: 9-45), and 28.64 ± 4.39 (possible range: 8-40), respectively. Path analysis showed the direct effect of knowledge on both attitudes (ß = 0.885, p < 0.001) and practices (ß = 1.295, p < 0.001), as well as of attitudes on practices (ß = 0.838, p < 0.001). Conclusion: Family caregivers of patients with cerebral infarction have sufficient knowledge, positive attitudes and proactive practices toward home-based care. However, they still exhibit deficiencies in certain aspects of knowledge, attitudes, and practice. Developing personalized educational strategies may be instrumental in enhancing family caregivers' knowledge of home-based care. This, in turn, could improve their attitudes and elevate their practice levels.

Effects of COVID-19 Illness and Vaccination Infodemic Through Mobile Health, Social Media, and Electronic Media on the Attitudes of Caregivers and Health Care Providers in Pakistan: Qualitative Exploratory Study.

BACKGROUND: The COVID-19 pandemic has had a significant impact on different countries because of which various health and safety measures were implemented, with digital media playing a pivotal role. However, digital media also pose significant concerns such as misinformation and lack of direction. OBJECTIVE: We aimed to explore the effects of COVID-19-related infodemics through digital, social, and electronic media on the vaccine-related attitudes of caregivers and health care providers in Pakistan. METHODS: This study employs a qualitative exploratory study design with purposive sampling strategies, and it was conducted at 3 primary health care facilities in the province of Sindh, Pakistan. Seven focus group discussions with health care providers and 60 in-depth interviews with caregivers were conducted using semistructured interviews through virtual platforms (ConnectOnCall and Zoom). Transcripts were analyzed through thematic analysis. RESULTS: Our study reveals the pivotal role of electronic media, mobile health (mHealth), and social media during the COVID-19 pandemic. Four major themes were identified: (1) sources of information on COVID-19 and its vaccination, (2) electronic media value and misleading communication, (3) mHealth leveraging and limitations during COVID-19, and (4) social media influence and barriers during COVID-19. Health care providers and caregivers reported that the common sources of information were electronic media and mHealth, followed by social media. Some participants also used global media for more reliable information related to COVID-19. mHealth solutions such as public awareness messages, videos, call ringtones, and helplines promoted COVID-19 prevention techniques and vaccine registration. However, the overwhelming influx of news and sociobehavioral narratives, including misinformation/disinformation through social media such as WhatsApp, Facebook, and Twitter, were found to be the primary enablers of vaccine-related infodemics. Electronic media and mHealth were utilized more widely to promote information and communication on the COVID-19 pandemic and vaccination. However, social media and electronic media-driven infodemics were identified as the major factors for misinformation related to COVID-19 and vaccine hesitancy. Further, we found a digital divide between the urban and rural populations, with the use of electronic media in rural settings and social media in urban settings. CONCLUSIONS: In a resource-constrained setting like Pakistan, the usage of mHealth, social media, and electronic media for information spread (both factual and mis/disinformation) related to COVID-19 and its vaccination had a significant impact on attitudes toward COVID-19 vaccination. Based on the qualitative findings, we generated a model of digital communications and information dissemination to increase knowledge about COVID-19 and its prevention measures, including vaccination, which can be replicated in similar settings for other disease burdens and related infodemics. Further, to mitigate the infodemics, both digital and nondigital interventions are needed at a larger scale.

Association between apathy and caregiver burden in patients with amyotrophic lateral sclerosis: a cross-sectional study.

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

A randomised study to evaluate the potential added value of shared meditation involving people with cancer, health professionals and third persons compared to meditation conducted with patients only: design of the Implic-2 protocol.

BACKGROUND: In oncology, the suffering of patients and the burnout of health professionals are key issues. Mindfulness meditation is a holistic approach that can help to improve well-being. While numerous studies have shown the benefits of meditation for both patients and health professionals, the added value of offering shared meditation to groups of patients, health professionals and third persons has not been assessed. Beyond strengthening the relationship between carers and patients, opening up meditation sessions to third parties (neither carers nor patients) enables patients to escape the stigma of their illness. We previously conducted a pilot study that validated the feasibility and the relevance of shared meditation with a specifically designed programme. METHODS/DESIGN: IMPLIC-2 is a two-arm randomised study designed to assess the added value of this meditation programme (optimised following the pilot study), particularly for cancer patients (our target population). People motivated to follow the programme, without previous regular practice of meditation and able to participate in the sessions are eligible. The study will include 96 participants: 16 health professionals, 16 third persons and 64 patients. The latter will be randomized in two arms: the experimental arm ("Shared" meditation) consisting of 4 mixed groups of 8 patients, 4 health professionals and 4 third parties, and the control arm ("Patient" meditation) consisting of 2 groups of 16 patients. Validated questionnaires will be used to measure the effects of the programme, notably in terms of quality of life, perceived stress, feelings of self-efficacy, qualities of mindfulness and self-compassion, and carers' burn-out. Participants' perception of a change in their quality of life and satisfaction will be measured at the end of the programme. A complementary qualitative focus-group approach will be used to optimise implementation of the programme beyond the study. DISCUSSION: The well-being of oncology patients would be improved. Dealing with overworked carers would have a beneficial impact on the way they interact with patients. In addition, encounters between the three types of population will allow otherness to be viewed differently and alleviate suffering by promoting collective humanity. TRIAL REGISTRATION: NCT06041607, registered: 09/18/2023. PROTOCOL VERSION: Version n°1.2 dated from 08/29/2023.

The perceptions and experiences of caregivers of patients with dysphagia: A qualitative meta-synthesis.

AIMS: To understand the perceptions and experiences of family caregivers of adult patients with dysphagia. BACKGROUND: Dysphagia is a common symptom and burdens caregivers greatly. There is a growing body of studies concentrating on caregivers and caregiving experiences. However, no qualitative meta-synthesis has been conducted to explore the perceptions and experiences of family caregivers. DESIGN: A qualitative meta-ethnography. METHODS: A search was conducted for relevant articles in six electronic databases (PubMed, Web of Science, CINAHL, Ovid, Cochrane Library, ProQuest) and two Chinese databases (CNKI, Wanfang Data) from inception to February 2023. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to evaluate study quality. The meta-ethnographic method was used to synthesize data from qualitative studies. The study was reported according to EQUATOR guidelines. RESULTS: Eleven studies were included and three themes emerged: (1) emotion and perception, (2) change and challenge (3) adaption and coping. CONCLUSION: This review highlighted the challenges and positive coping experienced by caregivers. Findings directly inform the development and implementation of supportive interventions to reduce caregivers' stress and promote adaptive coping. RELEVANCE TO CLINICAL PRACTICE: Pay attention to the needs of family caregivers of dysphagia. Family caregivers' perceived severity of dysphagia requires assessment. Caregivers need knowledge, support, and guidance to reduce their burden and fulfill their role.

Perspectives of practitioners on support for caregivers of children with intellectual disability.

BACKGROUND:  Children with profound intellectual disabilities are unable to do anything for themselves and require full-time care in healthcare facilities. While caring for children, secondary caregivers become overwhelmed. Coupled with little or no support, the overwhelming work affects their psychological, social and financial well-being. Mental healthcare practitioners have perspectives on conditions under which secondary caregivers work and how can they be supported. Little is known about such perspectives. OBJECTIVES:  This study aims to explore and describe the perspectives of mental healthcare practitioners regarding the conditions under which secondary caregivers of children with profound intellectual disabilities work and how can they be supported. METHOD:  A qualitative-exploratory-descriptive and contextual research design was adopted using a non-probability purposive sampling technique. This study was conducted in Gauteng province. Semi-structured individual interviews were performed to collect data. Content data analysis and ATLAS.ti were used to analyse the data. RESULTS:  Knowledge and skills development, stress reduction, resources and motivation were themes that emerged. CONCLUSION:  This study explored and described the perspectives of mental healthcare practitioners regarding the conditions under which secondary caregivers of children with profound intellectual disabilities work and how can they be supported. If implemented, perspectives can improve the holistic well-being of secondary caregivers.Contribution: This study broadened an understanding of how secondary caregivers can be supported. Future researchers can use study results to develop programmes, intervention strategies and frameworks to support secondary caregivers.

Barriers to care: Caregivers' accounts of raising a child with a communication disorder.

BACKGROUND:  There exists a dearth of research on the psychological experiences of childhood communication disorders. Caregivers of these children are one source who can provide us with this information since the child exists within a system. Literature on the experiences of caregivers of children with communication disorders, specifically in the South African city context, is lacking. OBJECTIVES:  The article presents the reported experiences of six parental caregivers raising a child with a communication disorder within Johannesburg. METHOD:  Data were collected via semi-structured interviews and underwent an interpretative phenomenological analysis. RESULTS:  Five themes are presented: feeling out of control; barriers to accessing services; caregivers left speechless; a misunderstood disability; and relinquishing control: 'I needed to be a mommy'. CONCLUSION:  The caregivers relayed an initially negative experience in raising a child with a communication disorder, marred with worry and fear for the future. In accessing services, they narrated their experiences of multiple barriers to access, including an overreliance on the private sector, financial barriers, time constraints, limited resources and poor information on available resources. Eventually, the caregivers were able to identify strengths, skills and capabilities within their children and themselves that allowed for adjustment and coping.Contribution: The findings highlight the importance of considering how barriers to care may marginalise and seclude parental caregivers. Over time, the caregivers were able to empower themselves through building their own knowledge and reformulating their narratives by challenging assumptions and retitling the source of disability as a product of the failure of society.

Burden in caregivers of patients with schizophrenia, depression, dementia, and stroke in Japan: comparative analysis of quality of life, work productivity, and qualitative caregiving burden.

BACKGROUND: The main objective of this study was to examine the burden of schizophrenia, depression, Alzheimer's disease/dementia, and stroke on caregivers and non-caregivers in Japan. This study also aimed to provide a comparative landscape on the burden of caregiving for each disorder. METHODS: The Japan National Health and Wellness Survey database, 2016 and 2018 was used in this study. Health-related quality of life (HRQoL), work productivity, and health care utilization were assessed using a self-administered, Internet-based questionnaire. The burden of caregiving experienced by each group of caregivers was compared with background-matched non-caregivers (controls) as well as with caregivers of patients with each disorder. RESULTS: Caregivers of patients with schizophrenia, depression, Alzheimer's disease/dementia, or stroke had lower HRQoL, higher healthcare costs and work productivity impairment than non-caregivers. Furthermore, caregivers of patients with psychiatric disorders such as schizophrenia and depression had lower HRQoL and work productivity than caregivers of patients with Alzheimer's disease/dementia and stroke. In addition, according to the Caregiver Reaction Assessment (CRA), caregivers of patients with schizophrenia and depression were more inclined to perceive a loss in physical strength and financial burden to the same extent as their self-esteem. CONCLUSIONS: This study indicated a substantial caregiving burden among caregivers of patients with psychiatric and neurological diseases in Japan. The caregiver burden of psychiatric disorders (schizophrenia and depression) was greater than that of neurological disorders (Alzheimer's disease/dementia and stroke), suggesting a need to provide support to caregivers of patients with psychiatric disorders to be better able to care for their patients. TRIAL REGISTRATION: None.

Quality of life of family caregivers of children and young adults with Down syndrome: A systematic review and meta-analysis.

Introduction: The aims of this systematic review and meta-analysis are to synthesise quality of life (QOL) of family caregivers of children and young adults with Down syndrome (DS) and determine factors affecting their QOL. Method: This review was conducted as per Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline. Key search terms were "quality of life", "down syndrome" and "trisomy 21". Meta-analysis using random effect model was conducted where feasible. All studies underwent qualitative synthesis. The study protocol was registered with PROSPERO (CRD42023413532). Results: Eighteen studies with 1956 caregivers were included. Of the 10 studies utilising the World Health Organization Quality of Life Instrument-Brief Version, 5 were included in the meta-analysis. Psychosocial domain had the highest score with mean (95% confidence interval [CI]) of 63.18 (39.10-87.25). Scores were poorer in physical, environmental and social domains: 59.36 (28.24-90.48), 59.82 (19.57-100.07) and 59.83 (44.24-75.41), respectively. Studies were heterogenous with I2 values ranging from 99-100% (P<0.01). The remaining 8 studies used 6 other instruments. Qualitative synthesis revealed that caregivers' QOL was adversely affected by child-related factors, such as level of functional independence, developmental delay, presence of multiple comorbidities, impaired activities of daily living and poor sleep quality. Environmental factors that adversely affected caregivers' QOL included number of children, housing and support from the family. Personal factors that affected caregivers' QOL included age, being a single mother, low education and low income. Conclusion: QOL of caregivers of children with DS was lower than population reference data. Understand-ing the factors that influence family caregivers' QOL is an essential step towards improving the QOL of caregivers and their children with DS.

Quality of life of children and young adults with Down syndrome from caregivers' perspective: A systematic review and meta-analysis.

Introduction: Down syndrome (DS) negatively impacts the well-being of affected individuals. This study aimed to summarise the evidence on quality of life (QOL) of children and young adults with DS using quantitative measures from caregivers' perspective and identify factors that affected their QOL. Method: Database search was conducted on PubMed, Embase, Web of Science and CINAHL on 24 April 2024. Meta-analysis using random effects model was conducted where feasible. All studies underwent qualitative synthesis. The study protocol was registered with PROSPERO (CRD42023413532). Results: Seventeen studies involving 3038 children with DS using various QOL measures were included: Pediatric Quality of Life Inventory (PedsQL) (8 studies), KIDSCREEN (4 studies), KidsLife (2 studies), The Netherlands Organization for Applied Scientific Research Academic Medical Center Children's QOL (2 studies) and Personal Outcome Scale (1 study). Meta-analysis on PedsQL studies compared scores between children with DS and typically developing (TD) children. Total scale score was lower in children with DS (mean 70.28, 95% confidence interval [CI] 64.31-76.24) compared to TD children (mean 88.17, 95% CI 80.50-95.83). All subdomains of PedsQL were also lower in children with DS. Within the domain of psychosocial health, children with DS had statistically significant lower social functioning (standardised mean difference -1.40, 95% CI -2.27 to -0.53) and school functioning (standardised mean difference -1.09, 95% CI -1.55 to -0.62) scores, but similar emotional functioning scores. Qualitative synthesis revealed poorer subdomain QOL compared to TD children, especially in social functioning and cognitive functioning. QOL worsened during adolescent years. Family variables (parental education and occupation) did not affect parental perception of children's QOL. Children with DS who had higher intelligent quotient had better QOL. Conclusion: Children with DS have lower caregiver-reported QOL than TD children, especially in social functioning and school functioning subdomains.