METHODS: A cross-sectional study was conducted among 128 caregivers of children with ASD in Kota Bharu, Kelantan from May to August 2020, using convenience sampling. Validated questionnaires were used to assess the knowledge and attitudes toward children with ASD. The data were analyzed using SPSS version 24. Descriptive statistics and simple and multiple logistic regression analyses were then performed.
RESULTS: The response rate was 100%. The proportion of good knowledge and attitudes toward children with ASD among caregivers was 85.1% and 88.3%, respectively. Factors significantly associated with good knowledge were being female (OR (95% CI) 2.79 [0.99-7.90]) and ASD children being non-first-born children (OR (95% CI) 0.41 [0.15-1.12]). Factors significantly associated with good attitudes were age of 30 years and older (OR (95% CI) 0.13 [0.03-0.62]) and caregiver having other children with other types of learning difficulties (OR (95% CI) 0.15 [0.04, 0.52]).
CONCLUSIONS: The proportion of caregivers with good knowledge of ASD and good attitudes toward children with ASD was high. The caregiver's age and sex, the position of the ASD child among the siblings, and the presence of other types of learning disorders in the family need to be considered when managing children with ASD.
METHODS: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent's demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity.
RESULTS: Five point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35-59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected.
CONCLUSIONS: Our study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia.
METHODS: We performed a comprehensive systematic search using PubMed, Embase, PsycINFO, and Econlit from inception to July 2022. Articles were included if they described innovation or the characteristics of innovation of the technologies in healthcare. Characteristics or definitions of innovation directly or indirectly described as innovation were extracted from the included articles. Two independent reviewers then conceptualized the identified characteristics of innovation to generate innovation attributes in healthcare.
RESULTS: In total, 103 articles were included in this review. Eight attributes describing innovation, i.e. novelty, step change, substantial benefits, an improvement over existing technologies, convenience and/or adherence, added value, acceptable cost, and uncounted benefits, were conceptualized. Most of the identified innovation attributes were based on the researchers' perspective.
CONCLUSIONS: This study conceptualized innovation attributes in healthcare based on the characteristics of healthcare innovation as defined in the literature. Further research is warranted to obtain a complete understanding of the perspectives of researchers and other stakeholders, including patients, healthcare providers, healthcare payers, and the pharmaceutical industry, on recognizing innovation in healthcare.KEY POINTSThis is the first systematic review to conceptualize attributes of healthcare innovation.We conceptualized eight attributes describing innovation, i.e. novelty, step change, substantial benefits, an improvement over existing technologies, convenience and/or adherence, added value, acceptable cost, and uncounted benefits based on the similar concept.In existing literature, patients' and caregivers' perspectives were less frequently found to describe the innovation attributes.Future research is needed to identify, measure, and value various stakeholders, including patients' and caregivers' perspectives on healthcare innovation.
METHODOLOGY: A phenomenological qualitative study was conducted from November 2020 to June 2021 in Malaysia. A total of 13 respondents were recruited from two public rehabilitation centers in Kota Bharu, Kelantan. In-depth interviews were conducted with the participants. Comprehensive representation of perspectives from the respondents was achieved through purposive sampling. The interviews were conducted in the Kelantanese dialect, recorded, transcribed, and analyzed using thematic analysis.
RESULTS: Three themes on burdens and experiences were identified. They were worsening pre-existing issues, emerging new issues, and fewer burdens and challenges. Two themes on coping strategies were also identified. They were problem-focused engagement and emotion-focused engagement.
CONCLUSIONS: The COVID-19 pandemic has changed the entire system of stroke management. While family caregivers mostly faced the extra burden through different experiences, they also encountered some positive impacts from the pandemic. The integrated healthcare system, especially in the era of digitalization, is an important element to establish the collaborative commitment of multiple stakeholders to compensate burden and sustain the healthcare of stroke survivors during the pandemic.
OBJECTIVE: The study aimed to explore youth perceptions of the My-Elderly-Care-Skills Module intervention and its perceived feasibility.
METHODS: This study involved youth respondents (18-30 years old) from low-income households who are accountable to providing care for independent older people (60 years or above) living in the same house. A qualitative study using a case study design was used to assess youth perceptions based on the content of the My-Elderly-Care-Skills module, by focusing on its implementation usage and usefulness for the care of the elderly. A total of 30 youths voluntarily participated in the online training workshop during the COVID-19 pandemic movement restriction order period. There were multiple sources of data, such as video recorded on reflection of care given at home, text messages in a WhatsApp group, and in-depth interviews during small group online meetings. Data were recorded and transcribed verbatim for common themes before a theme analysis was conducted. Inductive content analysis was performed after the saturation point was met.
RESULTS: Thematic analysis derived two domains of feasibility: operational and technical feasibility. There were three themes under operational practicality (improving awareness, addressing the caregiving skills needs, and seeking resources for knowledge) and three themes for technical practicality (easily used and informative, skill in effective communication, and program fulfillment).
CONCLUSION: It was verified that it is feasible for young caregivers of the elderly to participate in the My-Elderly-Care-Skills training intervention as it helps in improving knowledge and skills performance in managing and caring for the elderly.
MATERIALS AND METHODS: A cross-sectional study through a purposive sampling method was employed, involving 142 caregivers of CWD at the selected CBR centre. Four CBR centres were selected in this study, which were located in the Kudat division of Sabah. The Malay version of the Modified Caregiver Strain Index Questionnaire (M-CSI-M) was used in this study to obtain information about the caregiver's strain.
RESULTS: Findings from this study revealed that most caregivers experienced moderate strain (72.5%). Some of the leading causes of their strain were upsetting CWD's behaviour (10.6%), financial strain (9.2%), and overwhelmed (9.2%). In addition, there were significant differences between caregiver strain and their level of education, income, and the types of their child's disabilities (p ≤ 0.05).
CONCLUSION: The well-being of the caregivers may significantly impact the effectiveness of rehabilitation for CWD, as caregivers are vital interdisciplinary team members.
METHODS: Longitudinal data from two different sources were analysed: a pre-post study of an online parenting programme conducted across six countries - the ePLH Evaluation Study, and a prospective cohort study in the United States - LONGSCAN. Cross-lagged panel model on parenting stress and child maltreatment was used in each dataset.
RESULTS: Based on repeatedly measured data of 484 caregivers in the ePLH study across five time points (every two weeks), we found that parenting stress at an earlier time point predicted later child maltreatment (IRR = 1.14, 95 % CI: 1.10,1.18). In addition, the occurrence of child maltreatment was associated with higher subsequent short-term parenting stress (IRR = 1.04, 95 % CI: 1.01,1.08) and thus could form a vicious circle. In the LONGSCAN analysis with 772 caregivers who were followed up from child age of 6 to child age of 16, we also found parenting stress at an earlier time point predicted later child maltreatment (β = 0.11, 95 % CI: 0.01,0.20), but did not observe an association between child maltreatment and subsequent long-term parenting stress.
LIMITATIONS: Potential information bias on the measurements.
CONCLUSIONS: This study provides evidence for a bidirectional temporal relationship between parenting stress and child maltreatment, which should be considered in parenting intervention programmes.
METHODS: A systematic search was conducted in four databases from inception until April 30, 2021 as well as search of citation of included articles. Studies that reported patients' and/or their caregivers' attitude towards deprescribing quantitatively were included. All studies were independently screened, reviewed, and data extracted in duplicates. Patients and caregivers willingness to deprescribe their regular medication was pooled using random effects meta-analysis of proportions.
RESULTS: Twenty-nine unique studies involving 11,049 participants were included. All studies focused on the attitude of the patients towards deprescribing, and 7 studies included caregivers' perspective. Overall, 87.6% (95% CI: 83.3 to 91.4%) patients were willing to deprescribe their medication, based upon the doctors' suggestions. This was lower among caregivers, with only 74.8% (49.8% to 93.8%) willing to deprescribe their care recipients' medications. Patients' or caregivers' willingness to deprescribe were not influenced by study location, study population, or the number of medications they took.
DISCUSSION: Most patients and their caregivers were willing to deprescribe their medications, whenever possible and thus should be offered a trial of deprescribing. Nevertheless, as these tools have a poor predictive ability, patients and their caregivers should be engaged during the deprescribing process to ensure that the values and opinions are heard, which would ultimately improve patient safety. In terms of limitation, as not all studies may published the methods and results of measurement they used, this may impact the methodological quality and thus our findings. OPEN SCIENCE FRAMEWORK REGISTRATION: https:// osf.io/fhg94.
METHODS: A systematic search for studies concerning the perception of financial burden among cancer patients and their families was conducted. Several electronic resources such as Medline, Elsevier (Science Direct), Web of Science, Embase, PubMed, CINAHL and Scopus (SciVerse) were searched. Additionally, manual search through indices citation was also thoroughly utilized. The main outcome of interest was the prevalence of perceived financial hardship among cancer patients and their families. Studies reported only the cost of cancer treatment and qualitative studies were excluded. Our search was limited to articles that were published from 2003 to 2013.
RESULT: Ten studies were included in this review and with a majority originating from high-income countries. The prevalence of the financial burden perception was reported between 14.8 and 78.8 %. The most frequent and significant risk factor reported associated with the perception of financial difficulty was the households with low income. Discontinuation of treatment and poverty were conversely the important consequences of financial burden in cancer patients and their families.
CONCLUSION: Evidently, cancer is a long-term illness that requires a high financial cost, and a significant number of cancer patients and families struggle with financial difficulty. Identifying such groups with a high risk of facing financial difficulty is a crucial measure to ensure safety nets are readily available for these targeted population.