METHODS AND ANALYSIS: This two-phase sequential explanatory mixed-methods design, incorporating a quantitative design (phase I) and a qualitative study (phase II), is to be conducted in 4 government hospitals and 10 other non-governmental organisations or private dialysis centres within Klang Valley, Malaysia. A cross-sectional survey (phase I) will include 236 patient-caregiver dyads, while focus group discussions (phase II) will include 30 participants. The participants for both phases will be recruited purposively. Descriptive statistics, independent sample t-tests and multiple regression analysis will be used for analyses in phase I, and thematic analysis will be used in phase II.
ETHICS AND DISSEMINATION: Approval for the study has been obtained from the National Medical Research and Ethics Committee (MREC) (NMRR-21-1012-59714) and the Research Ethics Committee of Hospital Canselor Tuanku Muhriz UKM (UKM PPI/111/8/JEP-2021-078) and University of Malaya Medical Centre (MREC ID NO: 2 02 178-10346). Informed consent of the participants will be obtained beforehand, and no personal identifiers will be obtained from the participants to protect their anonymity. The findings will be published in peer-reviewed scientific journals and presented at national or international conferences with minimal anonymised data.
METHODS: A total of 236 breast cancer patients from China completed the Chinese Version of the Posttraumatic Stress Disorder Symptom Scale (PSS), the Chinese version of the Patient Health Questionnaire (PHQ-9), the Chinese version of the General Anxiety Symptoms Scale (GAD-7). In addition, caregivers of these breast cancer patients were surveyed by the Caregiver Self-Assessment Questionnaire (CSAQ).
RESULTS: Structural equation model showed that our model fitted well [χ2 /df = 1.966, TLI = 0.959, CFI = 0.994, RMSEA (90% CI) = 0.065 (0-0.12)] and revealed that anxiety, but not depression, mediated the relationship between PTSS in breast cancer patients and caregiver burden.
CONCLUSION: The level of PTSS was positively correlated with anxiety and depression in breast cancer patients, and the level of anxiety and depression was positively related to caregiver burden. The PTSS of patients positively predicted caregiver burden and this relationship appears to be mediated by the patient's anxiety.
METHODS: Drawing on ethnographic research from rural Malaysia, this descriptive article explores ethnic Malaysian-Chinese stroke survivors' lay understandings of stroke. Eighteen community-dwelling stroke survivors aged 50-83 took part in the study.
RESULTS: Causation of stroke was derived from cultural, biomedical and social sources. Participants also drew simultaneously from both biomedical and traditional explanations of stroke to develop their own understanding of etiology. Similarities with biomedical causation and other studies from different cultures were found. Participants' typically focused on the more immediate effects of stroke and often do not attribute causation and association with their comorbid conditions which are also risk factors of stroke.
CONCLUSION: Lack of knowledge about stroke and its symptoms was evident in participants' account. Findings emphasize the importance of knowledge based health interventions, especially in health education strategies for stroke survivors to reduce delays to diagnosis and potentially improve health outcomes post-stroke. Implications for rehabilitation Stroke survivors often form explanatory models of stroke that draw from both biomedical and traditional explanations of stroke. Understanding how people derive lay understandings of stroke can contribute towards developing the goals and activities that facilitate recovery and rehabilitation in similar settings. Health practitioners in the community should strengthen communication regarding the identification, etiology and risk factors of stroke with stroke survivors and their carers to improve compliance to medication, exercise and diet for better recovery. Sustained health education which is culturally relevant is recommended. Communication should also include non-physical impact of stroke (such as cognitive deficits and emotional difficulties) as the stroke survivors were unlikely to relate such symptoms to stroke.
METHODS: A phenomenological qualitative study was conducted from November 2020 to June 2021. Thirteen respondents were recruited from two public rehabilitation centers in Kota Bharu, Kelantan, Malaysia. In-depth interviews were conducted. A comprehensive representation of perspectives from the respondents was achieved through purposive sampling. The interviews were conducted in the Kelantanese dialect, recorded, transcribed, and analyzed by using thematic analysis.
RESULTS: Thirteen participants were involved in the interviews. All of them agreed with the need for a mobile application in stroke management. They believed the future stroke application will help them to seek information, continuous stroke home care, and help in the welfare of caregivers and stroke patients.
CONCLUSIONS: The current study revealed two themes with respective subthemes that were identified, namely, self-seeking for information and reasons for using a stroke mobile application in the future. This application helps in reducing healthcare costs, enhancing the rehabilitation process, facilitating patient engagement in decision making, and the continuous monitoring of patient health.
METHODS: A qualitative study design was employed. Data were collected through observations and semi-structured interviews of 12 caregivers and 11 people with dementia (PWD) at seven secondary care facilities. Observations were written in the field notes, and interviews were audio-recorded and transcribed. All data were subjected to thematic analysis.
RESULTS: Some personalised non-pharmacological interventions, such as physical exercise, music therapy, reminiscence therapy and pet therapy, were conducted in several nursing care centres. Collaborative care from the care providers and family members was found to be an important facilitating factor. The lack of family support led to care providers carrying additional workload beyond their job scope. Other barriers to non-pharmacological interventions were cultural and language differences between the care providers and PWD, inadequate staff numbers and training, and time constraints.
CONCLUSION: Although non-pharmacological approaches have been used to some extent in Malaysia, continuous education and training of healthcare providers and the family members of PWD is needed to overcome the challenges to their successful implementation.
CONCLUSIONS: Therapeutic equipoise, for psychiatric care, is an aspiration rather than a position easily achieved. In day-to-day clinical practice, there will be unexpected demands and barriers that cannot always be accommodated or surmounted. Psychiatrists can work collaboratively with patients, carers, and colleagues in conceptualising and care-planning to avoid extremes of therapeutic hubris and despair, and to adapt evidence-based care more effectively so that it is suited to the patient and their circumstances.
METHODS: A comprehensive search was done on 3 databases, namely PubMed, ScienceDirect, and Web of Science, to identify original cost-of-illness studies that only evaluate the economic burden of AD up to August 2022. The risk of bias in the studies was assessed using Consolidated Health Economic Evaluation Reporting Standards 2022 criteria. Cost articles without specifying etiology of AD or those in non-English were excluded.
RESULTS: Twelve of 5536 studies met the inclusion criteria. The total annual cost of AD per capita ranged from US $468.28 in mild AD to US $171 283.80 in severe AD. The cost of care raised nonlinearly with disease severity. Indirect caregiving cost represented the main contributor to societal cost in community-dwelling patients. When special caregiving accommodation was opted in daily care, it results in cost shifting from indirect cost to direct nonmedical cost. Formal caregiving accommodation caused increase in direct cost up to 67.3% of overall economic burden of the disease.
CONCLUSIONS: AD exerts a huge economic burden on patients and caregivers. Overall rise of each cost component could be anticipated with disease deterioration. Choice of special caregiving accommodation could reduce caregiver's productivity loss but increase the direct nonmedical expenditure of the disease from societal perspective.
RESULTS: Of the 141 participants, most were mothers (90.8%) and had a full-time job (55.3%). Most of them had adequate medication-related knowledge (71.6%) and an appropriate administration practice (83.0%). The majority of them (83.0%) also rated themselves as adherent to medication administration. The participants with a child above 5 years of age (91.2%) were found to have a better practice than those with younger children (75.3%) in medication administration (p = 0.012). However, those with a child taking two (adjusted OR: 12.53) or three (adjusted OR: 8.29) medications, getting their refills from private health institutions apart from this hospital (adjusted OR = 7.06) and having multiple illnesses (adjusted OR = 21.25) were more likely to be not adherent to medication administration.
CONCLUSION: Caregivers of chronically ill children in Malaysia generally have sufficient knowledge and an appropriate practice of medication administration at home. Yet, strategies to improve the adherence to medication administration, particularly in those who care for children with complicated health conditions, are warranted.
METHODS: This prospective study was conducted among the caregivers of 443 child TB patients registered during the study. Caregivers of children were queried using a structured questionnaire consisting of sociodemographic and socio-economic factors and the role of healthcare workers during the treatment course. Risk factors for non-adherence were estimated using a logistic regression model.
RESULTS: In multivariate analysis, the independent variables that had a statistically significant positive association with non-adherence were male sex (adjusted odds ratio [AOR] 5.870 [95% confidence interval {CI} 1.99 to 17.29]), age ≥45 y (AOR 5.627 [95% CI 1.88 to 16.82]), caregivers with no formal education (AOR 3.905 [95% CI 1.29 to 11.79]), financial barriers (AOR 30.297 [95% CI 6.13 to 149.54]), insufficient counselling by healthcare workers (AOR 5.319 [95% CI 1.62 to 17.42]), insufficient counselling by health professionals (AOR 4.117 [95% CI 1.05 to 16.05]) and unfriendly attitude and poor support from healthcare professionals (AOR 11.150 [95% CI 1.91 to 65.10]).
CONCLUSIONS: Treatment adherence in the present study was 86% using the Morisky Green Levine Medication Adherence Scale and 90.7% using the visual analogue scale tool. Predictors of non-adherence need to be a focus and caregivers should be given complete knowledge about the importance of adherence to TB treatment.
RESEARCH DESIGN AND METHODS: A search strategy was applied in six databases and grey literature. Inclusion criteria were primary observational studies on informal caregiving for care recipients aged 60 years and above, in the English language. Informal caregivers were those not formally hired and multimorbidity referred to presence of at least two health conditions. From a total of 2,101 titles, 230 abstracts were screened, and 19 articles were included. Quality assessment was conducted with application of the Newcastle-Ottawa-Scale.
RESULTS: Health-related and caregiving-related outcomes have been assessed for informal caregivers of older adults with multimorbidity. Caregiver subjective burden was most commonly evaluated and often reported to be low to moderate. In association with care recipient multimorbidity, caregiver burden, quality of life, and perceived difficulty in assisting the older adults were examined in 14 of the studies with mixed results. Studies were heterogeneous, with nonuniform definitions of informal caregivers and multimorbidity as well as measurement tools.
DISCUSSION AND IMPLICATIONS: This narrative review found that caring for older adults with multimorbidity impacts caregivers, although overall evidence is not conclusive. Despite caregiving-related outcomes being most commonly assessed among the caregivers, particularly subjective burden, findings suggest that it is worthwhile to examine other outcomes to enrich the evidence base.
MATERIALS: Focus group and individual interviews with patients, carers, healthcare staff, religious authorities, traditional healers and community members.
DISCUSSION: Four stages of help seeking were identified: (1) noticing symptoms and initial labelling, (2) collective decision-making, (3) spiritual diagnoses and treatment and (4) psychiatric diagnosis and treatment.
CONCLUSION: Spiritual diagnoses have the advantage of being less stigmatising, giving meaning to symptoms, and were seen to offer hope of cure rather than just symptom control. Patients and carers need help to integrate different explanatory models into a meaningful whole.
DESIGN: Systematic review and meta-ethnography.
DATA SOURCES: Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).
ELIGIBILITY CRITERIA: Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services.
DATA SYNTHESIS: A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria.
RESULTS: 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke.
LIMITATIONS: Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems.
CONCLUSIONS: Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services.
SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO 2015:CRD42015026602.