Assessing informal caregiver burden as well as knowledge on positioning and feeding of stroke patients in a tertiary hospital in Kelantan, Malaysia.

A significant proportion of stroke patients in Malaysia are supported by informal caregivers who often lack sufficient training. This lack of preparation contributes to an escalation in caregiver burden. A cross-sectional study was conducted using Caregiving Knowledge Questionnaire (CKQ-my) and Zarit Burden Interview (ZBI) with convenient sampling. The findings revealed that caregivers had limited knowledge regarding proper positioning, and most of them reported experiencing mild burden. Multiple logistic regression analysis showed that informal caregivers who were also the primary caregivers for severe stroke patients experienced a higher burden. Recognising and understanding the factors that contribute to caregiver burden in stroke cases is essential for developing effective programs to improve the quality of life for both stroke survivors and their informal caregivers.

Patient and Caregiver Engagement in an Era of COVID-19: What Did We Learn and How Do We Move Forward?

Patient and caregiver engagement is a core component of high-quality healthcare systems. The COVID-19 pandemic revealed to us the fragility of patient and family engagement that was not as firmly rooted in the health system as expected. In this paper, we reflect on case examples from healthcare organizations across Canada where pivots and adaptations were made to patient engagement activities. We share core enablers of engagement in times of high system stress, drawing on illustrative examples. We then synthesize key learnings in relation to existing literature and conclude with reflective questions as we orient the work of engagement into the future.

Walking Interventions and Sleep Quality of Persons Living With Dementia and Their Family Caregivers: Effects of Different Walking Companions.

PURPOSE: To examine the effect of walking interventions on sleep quality of persons with dementia (PWD) and their caregivers (dyads), and how different companions affect results. METHOD: Forty-five dyads were divided into three groups: a control group and two experimental groups (one with a care attendant, one with a family caregiver). The two experimental groups engaged in 120 minutes of walking per week for 24 weeks. RESULTS: A significant improvement in sleep quality was observed among PWD in the family caregiver group (Wald χ2 = 4.55, p = 0.033), whereas there was no improvement in the care attendant group. A slight improvement in sleep quality of family caregivers was also found. CONCLUSION: Findings suggest the importance of creating individualized walking activity plans for dyads, incorporating trust and rapport-building strategies to improve sleep quality. [Journal of Gerontological Nursing, 50(8), 46-56.].

All Good Without Anything Good. Beyond Survival: Understanding the Psychosocial Experiences of Individuals With Chronic Kidney Disease and Their Caregivers in Sri Lanka.

AIM: This study aims to explore the experiences of individuals with chronic kidney disease (CKD) undergoing haemodialysis and their caregivers, focusing on the disease's impact and the treatment process. BACKGROUND: In Sri Lanka, CKD is a growing health concern, particularly affecting farming communities and contributing to the strain on the biomedical healthcare system. Despite increasing awareness of CKD's physical implications, its psychosocial impact remains underexplored. This study seeks to fill this gap, aiming to inform culturally sensitive interventions and improve the healthcare system's responsiveness to the unique needs of Sinhala Buddhist individuals with CKD and their caregivers. DESIGN: An exploratory qualitative study. METHOD: Semistructured interviews were conducted with 10 individuals undergoing haemodialysis and 5 caregivers at a dialysis unit. The interviews were audio-recorded, transcribed and analysed using conventional qualitative content analysis. FINDINGS: The analysis revealed three interrelated main themes: (1) impact on standard of living (quality of life), (2) coping strategies and (3) medical experience, with a notable influence of traditional beliefs and practices. CONCLUSION: The findings highlight the need for a holistic approach to CKD management that integrates physical, emotional, psychological and social aspects, considering the significant role of traditional influences. Further research is essential to develop effective interventions that can enhance the quality of life for CKD. PATIENT OR PUBLIC CONTRIBUTION: The lived experiences of Sinhala Buddhist individuals with CKD and their caregivers served as a cornerstone, providing profound insights into the impact of the condition on their lives. Throughout the study, these participants played an instrumental role in refining the research's cultural sensitivity and relevance. Their engagement extended beyond the data collection phase to encompass feedback sessions, where they actively shared their perspectives. This ongoing collaboration ensured the study's depth and applicability to real-world experiences. By actively involving those directly affected by CKD, this collaborative approach safeguards that the study remains rooted in their voices and addresses their unique needs. REPORTING METHOD: This study adhered to relevant EQUATOR guidelines (the COREQ checklist). TRIAL REGISTRATION: This study is not a clinical trial, and thus, registration is not applicable.

Meeting report: patient and caregiver recommendations for a mobile health application for paediatric systemic lupus erythematosus.

Paediatric systemic lupus erythematosus (pSLE) management and research could be enhanced by a mobile health application (app); however, no app designed for pSLE is currently available. A development and design committee comprising of patients, parents/caregivers and other stakeholders met to inform development and design of an app specific for pSLE. This meeting report summarises the group's discussions and recommendations that could help create a useful and desirable app or mobile health tool for the pSLE community.

Influence parental- and child-related factors on the acceptance of SARS-CoV-2 test methods in schools and daycare facilities.

Introduction: Rapid testing for Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) infections was an essential step in reducing the spread of the virus and monitoring pandemic development. Most mandatory standard pandemic testing in Germany has been performed in schools and daycare facilities. We investigated the influence of behavioral and attitudinal characteristics of children and caregivers on their acceptance of (i) antigen-based nasal swab rapid and (ii) oral saliva-based pooled Polymerase Chain Reaction (PCR) tests. Methods: Conducted through a cross-sectional survey between November and December 2021, with 1962 caregivers and 581 children/adolescents participating, the study evaluated the acceptability of each testing method on a six-point scale. Participants scored one test method conducted on their child at one of six levels with 1 and 6 denoting "excellent" (1) and "inadequate" (6), respectively. We considered demographic variables, vaccination status, child mental health (measured by the SDQ-questionnaire), and facility type (kindergarten, primary school, secondary school) as covariates. Results: Results reveal a preference for saliva-based PCR tests over nasal swabs by about one grade, particularly among parents of unvaccinated children, especially if their child expressed future vaccination reluctance. Testing acceptance was lower among children with mental health issues, primary school-aged, and those with less-educated parents. Perception of test accuracy and convenience influenced attitudes, favoring saliva-based PCR tests. Moreover, children with mental health issues felt less secure during testing. Discussion: To our knowledge, this is the first study to investigate the influence of different testing methods on testing acceptance for SARS-CoV-2 in children and caregivers. Our study identifies predictors of lower acceptance of public health surveillance measures and enables the development of educational programs on testing and vaccination tailored to the needs of specific target groups. Moreover, we demonstrate that test acceptance in vulnerable groups can be enhanced by careful choice of an appropriate testing method.

The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care.

BACKGROUND: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care. METHODS: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires. RESULTS: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated. CONCLUSIONS: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care.

How to build resiliency in autistic individuals: an implication to advance mental health.

INTRODUCTION: Individuals on the autism spectrum (ASD) often experience poor mental health and coping strategies compared to their peers due to social exclusion and co-occurring conditions. Resiliency has been identified as a key factor in preventing adverse outcomes and promoting mental health. Therefore, it is important to determine what strategies can be used to build resiliency among autistic individuals. The current paper is one of the first studies that aims to collect information from autistic individuals and their caregivers on potential strategies to enhance resiliency. METHODS: We interviewed 18 participants from various provinces in Canada, comprising of 13 autistic individuals and 5 parents. We used thematic analysis to identify patterns in the data. RESULTS: Thematic analysis revealed three themes to indicate strategies that could be used to enhance resiliency, including: (a) self-reliant strategies, (b) using community-based facilities, and (c) contextual and individual characteristics. CONCLUSION: Although the body of literature on resiliency is evolving, this paper provides a unique perspective as it is one of the few studies that considers the experiences of individuals on the spectrum. In addition, this study focuses on identifying and describing specific strategies that can be used to enhance resiliency and mental health, which consequently can help address the existing gaps in knowledge and practice.

The Alzheimer's patients interaction through digital and arts (AIDA) program: A feasibility study to improve wellbeing in people with Alzheimer's disease.

Alzheimer's disease (AD) presents a growing global challenge, with an increasing prevalence and significant impact on individuals and public health. Effective pharmacological treatments directly impacting the disease are still lacking, highlighting the importance of programs and interventions aimed at improving the wellbeing of those affected. The present feasibility study aimed to evaluate the effectiveness and feasibility of the Alzheimer's patients Interaction through Digital and Arts (AIDA) program. AIDA's main objective is to enhance perceived wellbeing and quality of life of people with AD and their caregivers through a series of structured activities through museum- and art-based activities over five sessions. Pre- and post-program evaluations were conducted using Visual Analog Scales (VASs) to measure various dimensions of perceived wellbeing such as confidence, happiness, interest, optimism, and wellness. Results showed significant improvements in all considered dimensions for people with AD following AIDA activities, highlighting its potential to enhance overall wellbeing. Caregivers also reported increased perceived wellness post-program, demonstrating some positive effects also in healthy participants. The feasibility of AIDA was supported by positive feedback and engagement of participants. Overall, the AIDA program offers a non-intrusive and engaging approach to improve the perceived wellbeing of people with AD and caregivers while facilitating meaningful experiences (e.g., silence, sharing etc.) in cultural settings.

Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership.

BACKGROUND: Typically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics. METHODS: In the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey. RESULTS: In total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%). CONCLUSIONS: This sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.

Caregiver burden, mental health, quality of life and self-efficacy of family caregivers of persons with dementia in Malaysia: baseline results of a psychoeducational intervention study.

BACKGROUND: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD. METHODS: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy. RESULTS: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy. CONCLUSION: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD. TRIAL REGISTRATION: ISRCTN14565552 (retrospectively registered).

Knowledge, attitude, and practices related to lead pollution among adolescents and caregivers of young children living near Used Lead Acid Battery (ULAB) recycling sites in Bangladesh: a cross-sectional study.

BACKGROUND: Lead, a potent neurotoxin, causes irreversible damage to the nervous system, and low- and middle-income countries face huge health and economic productivity losses due to childhood lead exposure. In Bangladesh, informal Used Lead Acid Battery (ULAB) recycling sites are an important source of lead pollution. Little is known about lead awareness among communities exposed to ULAB recycling. Therefore, this study aims to assess knowledge, attitudes, and practices related to lead pollution among caregivers of young children and adolescents living adjacent to informal ULAB sites. METHODS: A cross-sectional study was conducted among 732 mothers of young children and adolescents in 4 districts of Bangladesh (survey and observation). Simple and multiple linear regression was conducted to describe patterns and predictors of lead-related knowledge and practices. RESULTS: 60% of respondents had heard the name 'lead' ("shisha"). The mean knowledge score was low (19 out of 44). Residents of high-risk districts, male respondents, and those with more than 5 years of schooling were significantly more likely to have higher knowledge scores than others. In terms of attitude, 52% of respondents perceived lead to be risky for human health but 43% thought lead pollution was controllable. Observation of households for lead exposure revealed that 63% of children and adolescents play or pass by ULAB sites, 29% ate non-food items, 41% of households had visible paint chips on the walls, 59% households used polished turmeric and 15% used lead-soldered cans to store foods. Among protective practices, 70% reported cleaning floors, 84% consumed iron-rich foods, and 48% consumed calcium-rich foods. CONCLUSIONS: The population had a high potential for lead exposure. Their knowledge about lead was limited, and risk perception was moderate. To reduce lead exposure and increase knowledge and awareness among the at-risk population, it is crucial to take measures such as mass awareness campaigns through media and schools. It is important to strengthen the implementation of existing policies, such as policies on leaded gasoline, paints, and lead-acid batteries, that can address the sources of lead exposure for the community.

Psychological Impact of Bladder Cancer: Insights from 219 Patients and Caregivers in Indonesia Using DASS-21 (2019-2023).

BACKGROUND Bladder cancer (BC) is a common disease worldwide. Low survival rates and high recurrence lead to the risk of mental disorders. This study analyzed 219 patients with bladder cancer using the Indonesian Version of the 21-item Depression, Anxiety, and Stress Scale (DASS-21) and related factors. MATERIAL AND METHODS This cross-sectional study included 219 patients diagnosed with bladder cancer during 2019-2023 in a referral hospital in Indonesia. Data were collected using a questionnaire that assessed the characteristics of the patients and a DASS-21 questionnaire. RESULTS Some patients and caregivers experienced depression, stress, and anxiety. The percentage of caregivers who experienced anxiety was higher than for patients (47.9% vs 45.7%). Statistical analysis showed that age, income, and marital status were associated with the incidence of depression (p=0.000, p=0.001, and p=0.000, respectively), anxiety (p=0.000, p=0.012, and p=0.001, respectively), and stress (p=0.000, p=0.007, and p=0.000, respectively). Routes of patient admission (p=0.043, respectively) and employment status (p=0.005, respectively) were associated with the incidence of depression in patients (p=0.043, respectively). Employment status was also associated with stress in patients (p=0.038, respectively). Statistical analysis of caregivers found that routes of patient admission and marital status were related to the incidence of depression among caregivers (p=0.036 and p=0.007, respectively). CONCLUSIONS Monitoring and providing support for patients and caregivers are needed to prevent poor prognosis due to psychological problems, including paying attention to sociodemographic factors.

IsiZulu-speaking caregivers' perceptions of child language stimulation.

BACKGROUND:  South African children from low-income households are at higher risk of cognitive-linguistic difficulties because of multiple risk factors. Early language stimulation minimises the effects of risk factors and prepares children for literacy and learning. Understanding caregivers' perceptions of language stimulation is important because perceptions shape practices, which determine child language outcomes. OBJECTIVES:  This study explored the existing perceptions of language stimulation among 15 isiZulu-speaking caregivers from KwaDabeka township. METHOD:  A qualitative, descriptive research design was adopted and the caregivers were interviewed using a semi-structured interview schedule. The NVivo software programme supported the inductive, thematic analysis of the data. RESULTS:  Although the caregivers held positive perceptions of language stimulation, their perceptions of benefit focussed on meeting children's basic physiological needs with less reference to the long-term benefits for literacy, employment and social integration. Providing language models, watching television, singing songs, and reading books were perceived to be examples of language-stimulating activities and techniques. The caregivers expressed a need to improve their knowledge of language stimulation and queried how they could be supported to achieve this outcome. CONCLUSION:  This group of caregivers needed support to increase their awareness of the long-term benefits of language stimulation and their knowledge and use of evidence-based activities, stimuli and facilitation techniques.Contribution: Caregivers' existing perceptions could serve as a barrier to the effective language stimulation of children from low-income households in South Africa.

Caregivers' perspectives of early developmental tele-assessments in challenging circumstances.

BACKGROUND:  Outbreaks, such as the COVID-19 pandemic in 2020, exacerbate barriers to accessing early childhood developmental care. Tele-assessment may serve as an innovative approach to developmental monitoring to overcome service delivery amidst challenging circumstances. It is vital to collect caregivers' perspectives of this potential service delivery method to inform clinical decision making. OBJECTIVES:  This study aimed to determine caregivers' perspectives of interview-based early developmental tele-assessment in a South African context. METHOD:  Thirty caregivers of children (aged birth - 36 months) completed a caregiver-report developmental assessment via a telecommunications platform, as well as an online questionnaire probing their perspectives on the tele-assessment. RESULTS:  Most participants (96.7%, n = 29 out of 30) rated their overall experience of the tele-assessment as positive; however, 53.8% (n = 14 out of 26 that answered the question) indicated that they would additionally still prefer in-person assessment. CONCLUSION:  Tele-assessment appears to be a viable approach for caregivers to access developmental care during circumstances such as COVID-19.Contribution: This study provided valuable insight into a novel approach using interview-based early developmental tele-assessment and the perspectives of caregivers thereof.

Experiences of caregivers of children with autism during the COVID-19 pandemic: A scoping review.

BACKGROUND:  The coronavirus disease 2019 (COVID-19) outbreak has had a profoundly negative impact on people all over the world, particularly those with disabilities such as autism. However, there are gaps in research understanding the impact of COVID-19 on this population and the support required. AIM:  To explore the evidence available on the impact of the COVID-19 pandemic on caregivers of children with autism. METHOD:  A scoping review methodology using the Arksey and O'Malley framework was employed. Five electronic databases from March 2020 to December 2022 were reviewed. Two thousand two hundred and six articles were retrieved with primary search terms: caregivers (population), autism (diagnosis) and COVID-19 (context). Following the screening of titles, abstracts and articles, 36 articles were included in the final review. Thematic and content qualitative analysis was completed. RESULTS:  Preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) guided the reporting of the findings. Three main themes were identified: (1) caregiver's mental health and wellbeing, (2) response to remote health care and support and (3) caregiver resilience. CONCLUSION:  The pandemic affected children with autism and their families regarding changes in routine, difficulties with support and emotional states. However, little research has been conducted on the impact in upper-middle-income countries such as South Africa.Contribution: The findings from this review carry practical implications that extend beyond the pandemic, such as political instability or natural disasters that may present similar stressors for children with autism and their families.

Caregivers' voices: From the world of autism spectrum disorder.

BACKGROUND:  Caring for a child with autism spectrum disorder (ASD) is a challenging and stressful task, especially in countries with limited resources. Additional research is necessary, considering the increasing prevalence of children with ASD, to gain increased knowledge of the complex difficulties faced by caregivers of ASD children and to offer insights into the coping strategies and support networks that parents utilise. OBJECTIVES:  The objective of this study was to explore and describe the experiences and coping mechanisms of caregivers of children with ASD in Dr Kenneth Kaunda district, North West province, South Africa. METHOD:  Qualitative explorative, contextual and descriptive design with purposive sampling technique and semi-structured interviews were conducted. Data were analysed following the six steps of reflexive thematic analysis. RESULTS:  Two themes were identified: Caregivers' experiences in raising a child with autism, and caregivers' coping in raising a child with autism. CONCLUSION:  The research established caregivers' experiences and coping mechanisms in raising a child with ASD and the effects on different aspects of their lives including emotional, social and financial aspects, which contribute negatively to their holistic well-being. These impediments warrant the establishment of emotional support groups, empowerment of caregivers and awareness-raising through campaigns to educate the family and the community on the diverse challenges.Contribution: The findings of this study contribute to a deeper understanding of the multifaceted challenges faced by caregivers of children with ASD and provide insights into the support systems and coping mechanisms employed by these caregivers within the socio-ecological context.

Insights From a New National Academies Report on Caregiving.

This Viewpoint details the findings of a report from the National Academies of Sciences, Engineering, and Medicine on family caregiving among those in science, technology, engineering, mathematics, and medicine.

Safety-netting strategies for primary and emergency care: a codesign study with patients, carers and clinicians in Sweden.

OBJECTIVES: To codesign safety-netting strategies for primary and emergency care settings by integrating the experiences and ideas of patients, carers and clinicians. DESIGN: A codesign process involving two focus group discussions, eight individual interviews and five workshops. All sessions were audio recorded and transcribed verbatim. Data were analysed using qualitative content analysis and reported using the Consolidated criteria for Reporting Qualitative research guidelines. SETTING: Primary and emergency care in Sweden, focusing on the Stockholm region. PARTICIPANTS: 7 (5 women) individuals with patient expertise, 1 (man) individual with carer expertise, 18 (12 women) individuals with clinical expertise. RESULTS: Three main categories reflecting strategies for applying safety-netting were developed: first, conveying safety-netting advice, which involves understanding patient concerns, tailoring communication and using appropriate modalities for communicating; second, ensuring common understanding, which involves summarising information, asking a teach-back question and anticipating questions post consultation; and third, supporting safety-netting behaviour, which involves facilitating reconsultation, helping patients and carers to navigate the health system and explaining the care context and its purpose. CONCLUSIONS: Our study highlights the collaborative nature of safety-netting, engaging both the clinician and patient, sometimes supported by carers, in an iterative process. Adding to previous research, our study also emphasises the importance of anticipating postconsultation inquiries and facilitating reconsultation.