METHODS: This study was carried out in two phases: the translation and cultural adaptation phase and the validation phase. The instrument was translated from English to Malay and then adapted and validated in a sample of 337 patients with CKD stages 3-4 attending a nephrology clinic in a tertiary hospital in Malaysia. Structural validity was evaluated by exploratory factor analysis. The instrument's reliability was assessed by internal consistency and test-retest reliability. The correlations between the MCKD-SM and kidney disease knowledge and the MCKD-SM and self-efficacy were hypothesised a priori and investigated.
RESULTS: The MCKD-SM instrument has 29 items grouped into three factors: 'Understanding and Managing My CKD', 'Seeking Support' and 'Adherence to Recommended Regimen'. The three factors accounted for 56.3% of the total variance. Each factor showed acceptable internal reliability, with Cronbach's α from 0.885 to 0.960. The two-week intra-rater test-retest reliability intraclass correlation coefficient values for all items ranged between 0.938 and 1.000. The MCKD-SM scores significantly correlated with kidney disease knowledge (r = 0.366, p
OBJECTIVES: This qualitative study aimed to explore the lived experience of caregivers of AWE in Malaysian families and understand their caregiving challenges. Individual semi-structured interviews were held with 12 primary caregivers of AWE. Interpretative Phenomenological Approach (IPA) was used. The interview transcripts were analyzed using NVivo12 software.
RESULTS: Primary caregivers of AWE were parents or siblings, with ages ranging from 56 to 80 years old and years of caregiving from 24 to 40 years. Most AWE (58%) were intellectually disabled and fully dependent on ADL needs. Two categories of themes emerged, including four themes on caregiver burden, i.e., physical, emotional, and social burdens, and challenges in future planning of care, and two themes on coping strategies (problem- or emotional-focused). In future planning of care, most caregivers especially parents carried a burden of responsibility and were reluctant to depend on others or institutional services.
CONCLUSION: The caregiving burden among caregivers for adult AWE was not confined to current burdens only but also challenges in future planning. A better understanding of the caregiving burden for AWE and coping strategies is needed to provide tailored psychoeducation or psychosocial intervention to support this population.
METHODS: An integrative literature review was conducted to investigate barriers impacting the quality of end-of-life care. This review process involved searching database like MEDLINE, Cochrane Central Register of Controlled Trials, CINAHL, EBSCO, and ScienceDirect up to November 2023. Search strategies focused on keywords related to barriers in end-of-life care and critical care nurses from October 30th to November 10th, 2023. The inclusion criteria specified full-text English articles published between 2010 and 2023 that addressed barriers perceived by critical care nurses. This integrative review employs an integrated thematic analysis approach, which combines elements of deductive and inductive analysis, to explore the identified barriers, with coding and theme development overseen by the primary and secondary authors.
RESULTS: Out of 103 articles published, 11 articles were included in the review. There were eight cross-sectional descriptive studies and three qualitative studies, which demonstrated barriers affecting end-of-life care quality. Quality appraisal using the Mixed Method Appraisal Tool was completed by two authors confirmed the high credibility of the selected studies, indicating the presence of high-quality evidence across the reviewed articles. Thematic analysis led to the three main themes (1) barriers related to patients and their families, (2) barriers related to nurses and their demographic characteristics, and (3) barriers related to health care environment and institutions.
CONCLUSION: This review highlights barriers influencing the quality of end of life care perceived by critical care nurses and the gaps that need attention to improve the quality of care provided for patients in their final stages and their fsmilies within the context of critical care. This review also notes the need for additional research to investigate the uncover patterns and insights that have not been fully explored in the existing literature to enhance understanding of these barriers. This can help to inform future research, care provision, and policy-making. Specifically, this review examines how these barriers interact, their cumulative impact on care quality, and potential strategies to overcome.
METHODS: Cross-sectional study of 144 parents of children with ASD were recruited from two main tertiary hospitals in Kelantan, Malaysia, a developing country in Southeast Asia. Pearson correlation was used to examine the relationship between parental affiliate stigma, resilience and QoL. Simple and multiple linear regression analyses were used to identify the significant associated factors of affiliate stigma, resilience and QoL.
RESULTS: Correlational analyses revealed that perceived affiliate stigma demonstrated an inverse relationship with resilience and QoL. Additionally, resilience had a positive relationship with QoL. Regression analyses revealed that the father's employment status, the mother's level of education, having a disability card, the child's age at ASD diagnosis, comorbidities of the child and ASD severity perceived by parents were associated with parental affiliate stigma, resilience and QoL.
CONCLUSION: Study findings highlight the contribution of socio-demographic characteristics of children with ASD and their families in the determination of affiliate stigma, resilience and QoL.
METHODS: Previous studies relevant to this topic were identified from 7 databases. Searches were performed in PubMed, CINAHL, Web of Science (WOS), Scopus, Psychology and Behavioral Science Collection (PBSC), Embase, PsychINFO from 1 Jan 1980 to 31 December 2023. The findings were reported according to caregiver burden, caregiver needs, and coping strategies.
RESULTS: 22 studies were included in this review, including 14 quantitative and 8 qualitative studies. Six types of burdens were identified: psychological, physical, medical, economic, social, and family. The predominantly reported burden was the psychological burden in developed and developing countries. However, caregivers in developing countries reported additional physical, social, and economic burdens due to cultural and socioeconomic factors. Furthermore, inaccessible and unaffordable health care with a lack of medical knowledge exacerbated the challenges. Stigma and misconceptions led to more psychological distress and social restriction. There is a need for psychological, social, and family support as well as medical information to promote self-efficacy among caregivers. Most caregivers develop their own coping strategies for dealing with caregiving stress.
CONCLUSION: The caregiving burden for AWE is an understudied area that needs to be addressed by healthcare professionals. The caregivers are experiencing unaddressed psychological and other types of burdens, together with a lack of appropriate interventions and healthcare information.
BACKGROUND: Having a loved one in the ICU is a stressful experience, which may cause psychological distress for family members. Depression, anxiety and stress are the common forms of psychological distress associated with ICU patient's family members. Directly or indirectly, psychological distress may have behavioural or physiological impacts on the family members and ICU patient's recovery.
DESIGN: The study was based on the five-stage methodological framework by Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19) and were guided by the PRISMA-ScR Checklist.
METHODS: A comprehensive and systematic search was performed in five electronic databases, namely the Scopus, Web of Sciences, CINAHL® Complete @EBSCOhost, ScienceDirect and MEDLINE. Reference lists from the screened full-text articles were reviewed.
RESULTS: From a total of 1252 literature screened, 22 studies published between 2010-2019 were included in the review. From those articles, four key themes were identified: (a) Prevalence of psychological distress; (b) Factors affecting family members; (c) Symptoms of psychological distress; and (d) Impact of psychological distress.
CONCLUSIONS: Family members with a critically ill patient in ICU show high levels of anxiety, depression and stress. They had moderate to major symptoms of psychological distress that negatively impacted both the patient and family members.
RELEVANCE TO CLINICAL PRACTICE: The review contributed further insights on psychological distress among ICU patient's family members and proposed psychological interventions that could positively impact the family well-being and improve the patients' recovery.
METHOD: This descriptive qualitative study employed purposive and snowball sampling methods to recruit 14 pediatric nurses from six hospitals in Zhejiang province, Southeast China. Individual semi-structured interviews were conducted face-to-face between January and June 2024. Data were analyzed through the qualitative content analysis approach.
RESULTS: We identified 415 unique meaning units in the interview data, 332 of which were related to child-friendly healthcare practice assessment. These units were classified into 58 codes across 4 categories and 17 subcategories. The four categories were identified: services designed for children's interests, tailoring the environment adapted for children, facilitating social interactions, and promoting childhood development.
CONCLUSION: The findings from this study were derived from the perspectives of Chinese nurses on child-friendly healthcare practice assessment, offering a comprehensive and multidimensional view of this field. The results reflect the current state and future direction of child-friendly healthcare in China, which will aid in sustaining the development of a child-friendly healthcare evaluation system.