The relationship between perception of anxiety and quality of life in caregivers of children with autism was verified. To verify quality of life, the Short Form Healthy Survey Item was used; perception of anxiety was assessed using the Beck Anxiety Inventory. 80 caregivers of children with autism participated, with 68.7% of caregivers being mothers. Of the total number of caregivers, 68.8% had a severe level of anxiety. Regarding quality of life, they demonstrated greater impairment in Limitation due to physical aspects, Limitation due to emotional aspects, Vitality and Pain. Caregivers with severe anxiety levels had worse quality of life in the domains of pain (p = 0.012), social aspects (p =< 0.001), limitation due to emotional aspects (p = 0.001) and mental health (p =< 0.001). However, in the functional capacity domain, caregivers with a moderate level of anxiety had a better physical capacity score (p = 0.001). There was a negative correlation between the general anxiety score and the general physical (p = 0.029) and general emotional component of quality of life (p =< 0.001). It was found that caregivers of children with ASD present losses related to psychological factors, quality of life and the lack of social support.

Abstract: 1) Background: The present study aimed to examine the effect of the instructional intervention in family caregivers’ perceived threat of stroke patients’ dependency risk. 2) Methods: This was a randomized controlled clinical trial in which two patient and family caregiver groups of 45 were randomly divided into intervention and control groups based on the inclusion/exclusion criteria. Instructional intervention for family caregivers in the intervention group was in the form of four one-hour sessions. The data were collected before and immediately after instructional intervention at the hospital as well as two weeks and two months following the intervention via postal service. The data analysis was done using SPSS ver.22. 3) Results: The pre-intervention family caregivers’ perceived threat was not significantly different in the two groups (P = 0.591). However, the family caregivers’ perceived threat of the intervention group increased after the intervention compared with the control group (P < 0.001). In addition, the family caregivers’ perceived threat of the intervention group was significantly different in all post instructional intervention stages compared with pre-intervention (P < 0.001), whereas no such difference was observed in the control group (p = 0.245). 4) Conclusions: It is recommended that stroke patients' caregivers be provided with instructional programs to enhance their understanding of patient dependency risks and challenges.

Celiac disease (CD) is an autoimmune disorder triggered by the ingestion of gluten and affects approximately 1% of the global population. Currently, the only treatment available is lifelong strict adherence to a gluten-free diet (GFD). Chronic diseases such as CD affect patients and their family members’ quality of life (QoL); particularly parents and caregivers who play an essential role in the child’s care and treatment. A higher level of psychological distress has been found in the parents of children with chronic ailments due to limited control over the child’s daily activities and the child’s illness. In this context, the validation of a specific questionnaire of QoL is a valuable tool to evaluate the difficulties faced by parents or caregivers of children with this chronic illness. A specific questionnaire for this population can elucidate the reasons for stress in their daily lives as well as the physical, mental, emotional, and social impact caused by CD. Therefore, this study aimed to develop and validate a specific questionnaire to evaluate the QoL of parents and caregivers of children and adolescents with CD. The study was developed in six steps: (i) development of the CD parent/caregiver QoL questionnaire (CDPC-QoL); (ii) subjective evaluation; (iii) validation of the questionnaire by the Delphi method; (iv) evaluation of the internal consistency and reproducibility of the CDPC-QoL; (v) application of the questionnaire to Brazilian CD parents or caregivers; and (vi) statistical analysis. Overall results showed that a higher family income resulted in a higher score of the worries domain. In addition, having another illness besides CD decreased the QoL (except in the worries domain). The other variables studied did not present a statistically significant impact on the QoL, which was shown to be low in all aspects. Knowledge of the QoL is important to help implement effective strategies to improve celiac patients’ quality of life and reduce their physical, emotional, and social burden.

The prevalence of autism in children in the world is estimated as one per 62 children, higher levels reported in some countries. These children experience significant problems with the development of social, behavioural and verbal and non-verbal communication skills. The skills impairment levels varies from an individual to another and that made teaching autistics a challenge for caregivers such as teachers and relatives. Hence, there are quite a number of frameworks of a software learning systems which focus on gaining the children’s attention using representational visual illustration as a learning method instead of the textual form. However, majority of these tools are lacking the personalisation ability to suite everyone in the spectrum. Assistive technology offers an alternative way to attract children with autism to use. Therefore, this research is proposing Autism Content Management Learning System (ACMLS) Framework to assist caregivers to produce, design and fine-tune or customise the learning materials appropriately so that the system interface and the materials are suitable for every individual in the spectrum according to each child personal profile aiming to make learning attractive and to contribute in improving their social, communication and behavioural skills and nonetheless, their attention level to the delivered educational topics. The ACMLS framework design adopts four main components which are: (1) Design component: which covers the visual design, design principles and the mental model of the children with autism. (2) Technology component: which covers the assistive technology tools and the architecture of the ACMLS system. (3) Education component: Which covers the learning objectives, styles, strategies, methods and the cognitive model. (4) Participants component: which covers the main participants who’re playing a role in the ACMLS framework such as: caregivers and children with autism.

The quadruple burden of diseases, early discharge from hospital and hospital at home have resulted in home-based care services becoming a requirement in South Africa. The home-based care services generate a significant amount of health care risk waste that is mismanaged. However, more attention is given to the health care risk waste generated in hospitals and clinics than to health care risk waste generated by home-based caregivers. Therefore, this study investigates the health care risk waste management practices by home-based caregivers. The study adopted a mixed research approach, qualitative and quantitative methods, using a literature review, interviews, and questionnaires as means of data collection. Results show that there are different types of health care risk waste generated as a result of different activities performed by home-based caregivers, but that the waste was found to be managed in an unsafe manner. The majority of households receiving home-based care did not have basic sanitation facilities such as toilets, running water and waste removal services, aggravating the issue of health care risk waste mismanagement. The study recommends a new policy framework that will lead to safe management practices of generated health care risk waste to be adopted by home-based caregivers.

Background: Informal caregivers' own quality of life, health status, and determinants are poorly understood despite their concerns for the health of the individuals they assist. Objectives: To compare the quality of life and the health determinants of older informal caregivers with those of older adults without caregiving responsibilities. Methods: An online survey was designed to investigate the quality of life and the health determinants of people aged 65 years and over, with a focus on informal caregivers. In addition to socio-demographic data, the number of informal caregiver and the Zarit scale of caregiver burden were collected. Quality of life (SF-12) and health determinants (access to technology and level of physical activity (IPAQ)) were assessed and compared between informal caregivers and the others. Results: A total of 111 participants (70 ± 3.83 years, 71.2% of women). The majority of respondents (91.8%) were Belgian. One third of the respondents identified themselves as informal caregiver and declared to have severe burden (61.9±15.2/88). Socio-demographic characteristics and access to technology were similar between informal caregivers and non-caregivers (p>0.05). However, informal caregivers have a lower SF-12 score in the mental score domain (44.3±10.2 vs; 50.7±7.0; p=0.004) and a lower level of physical activity (434±312 METS/min/week vs.1126±815 METS/min/week; p=0.01) than their peers. Conclusions: Informal caregivers reported lower quality of life and lower level of physical activity than their peers. Given the recognized importance of physical activity for overall health, this survey highlights the need to promote physical activity among older informal caregivers.

This study examined the effects of group art therapy on depression, burden, and self-efficacy in primary family caregivers of patients with brain injuries. This was a quasi-experimental, nonequivalent control group and a pre- and post-test design. This study was carried out in one national rehabilitation hospital targeting 41 primary family caregivers of patients with brain injuries. Group art therapy intervention was carried out three days per week for 12 times over four consecutive weeks. The experimental group (n = 20) received group art therapy, whereas the control group (n = 21) did not. We used a time difference method to minimize the risk of contaminating the control group by sampling sequentially. The experimental group showed a significantly greater decrease in burden (t = 2.462, p = 0.020) and significantly greater improvement in self-efficacy (t = −6.270, p &lt; 0.001) than the control group. Group art therapy may be an effective nursing intervention for primary family caregivers of patients with brain injuries.

Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following completion of advance directives. The sample included advanced cancer patients and caregivers (n=98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.

Unpaid family caregivers must consider the economic trade-off between caregiving and paid employment. Prior literature has suggested labour force participation (LFP) to decline with caregiving intensity, but no study has evaluated this relationship by accounting for the presence of both kinks and discontinuities. Here we used respondents of the China Health and Retirement Longitudinal Study baseline survey who were non-farming, of working-age (aged 45-60) and had a young grandchild and/or a parent/parent-in-law. For women and men separately, a caregiving threshold-adjusted probit model was used to assess the association between LFP and weekly unpaid caregiving hours. Instrumental variables were used to rule out the endogeneity of caregiving hours. Of the 3,718 respondents in the analysis, for men, LFP was significantly and inversely associated with caregiving that involved neither discontinuities nor kinks. For women, a kink was identified at the caregiving threshold of 8 hours per week such that before 8 hours, each caregiving hour was associated with an increase of 0.0257 in the marginal probability of LFP, but each hour thereafter was associated with a reduction of 0.0014 in the marginal probability of LFP. These results have implications for interventions that simultaneously advance policies of health, social care and labour force.

Children under two years old are at risk for anemia because young children have an increased need for iron for their physical growth and brain development. The purpose of this study was designed to evaluate the effects of a caregiver potential support program on anemia prevention in children six months to two years old attending the subdistrict health-promoting hospital in Thasala District, Nakhon Si Thammarat Province. This study was quasi-experimental. The sample included children aged six months to two years old and their caregivers, who were selected by random sampling and allocated to either the experimental or control group, with 40 pairs per group. The experimental group received a potential support program, while the control group received regular care. Both groups were followed for 12 weeks. The instruments used were the potential caregiver assessment, children’s anemia assessment, and a program to support the potential of primary caregivers. Descriptive statistics, chi-square, and t-tests were used to analyze the data. The results revealed that 11.4% of the children had anemia, and a hematocrit count of less than 33% (range = 30-40, M = 34.89, SD = 1.97). The mean scores of knowledge about anemia and iron supplementation after using the program in the experimental group and control group were significantly different (p < 0.001). The mean scores of knowledge about anemia in the experimental and control group were 15.75, SD = 0.54, and 13.28, SD = 1.43 respectively. The mean scores of knowledge about iron supplementation in the experimental and control group were 10.75, SD = 0.49, and 8.15, SD = 1.54 respectively. It was found that the experimental group had a higher mean score on food care behaviors than the control group for 6-11 months and 1-2 years, with statistical significance. The experimental group also had a higher mean score of care behaviors concerning children’s consumption of medicine than the control group (M = 58.20, SD = 4.05; M = 45.78, SD = 9.66, respectively), (p < 0.001). The mean score of the hematocrit level for the experimental group was found to be higher than the control group after receiving the program (M = 35.80, SD = 1.55; M = 34.83, SD = 2.14, respectively), (p < 0.05). Therefore, healthcare providers should support caregivers' capacity to provide continued care for children to prevent anemia.

Background: Caring for a loved one can be rewarding but also associated with substantial caregiver burden, developing mental outcomes and affecting happiness. Eventually, these physical and psychological disorders can lead to an imbalance of the autonomic nervous system. Meditation has been found to offer multiple benefits to relieve these disorders and reduce the risk of cardiovascular disease. The aim of this study was to determine the effects of a four-week 16-hour presential meditation program on physiological and psychological parameters and vagal nerve activity in high-burden caregivers, comparing the results with those not receiving this program. Methods: A non-randomized repeated-measures controlled clinical trial was conducted, dividing participants between intervention and control groups by convenience allocation because random assignment was ethically inappropriate. Results: After the meditation program, the experimental group showed a significant reduction in anxiety levels (F= 24.92, p<0.001), a non-significant amelioration of depression levels (F= 1.75, p=0.19), and significantly improved heart rate variability (F= 8.40, p<0.05) and SDNN (F=15.59, p<0.05). Conclusions: Meditation can be a useful therapy to enhance the mental health and autonomic nervous system balance of informal caregivers, improving symptoms of physical and mental overload.

This empirical research is part of a larger project beginning in 2020 and ongoing until 2023 exploring the impact of the COVID-19 pandemic on young caregivers aged 5-25 years and their families in Canada. Utilizing the social determinants of health as a conceptual framework, this case study emphasizes the voices of professionals offering services to young caregiver clients during the pandemic, and explores their perspectives on the impact of the pandemic on young caregivers and their families. Across three (3) different organizations offering programs and services to young caregiver clients in Ontario, six (6) individual interviews were conducted with directors/program managers and four (4) group interviews were conducted with thirteen (13) staff members who worked directly with young caregivers and their families. Nineteen (19) service providers participated in total. The results of this study highlight five (5) primary themes that emerged through data analysis: i) the role of service providers, ii) the impact of the COVID-19 pandemic on organizations and service providers supporting young caregivers and their families, iii) barriers for service users, iv) helpful resources for service providers and organizations, and v) resources needed/preferred by service providers and organization. The pandemic significantly impacted young caregivers and their families, as reported by professionals, and organizations working with young caregivers and their families were tasked with addressing increased service demands and adapting service delivery to follow public health guidelines.

Mothers of children with a specific clinical condition such as type 1 diabetes mellitus (T1DM) may experience higher levels of stress predisposing them to a poorer perception of quality of life and alterations in nutritional status. The aim of this research was to evaluate the relationship between nutritional status and quality of life perception of mothers caring for children with Type 1 Diabetes Mellitus. This research was conducted from July to September 2022, with mothers of children aged 5 to 10 years with diabetes. Data were collected through an online questionnaire including soci-oeconomic information, anthropometric data, clinical data of the children, and the WHO-QOL-abbreviated quality of life questionnaire. For statistical analysis, Statistical Package for Social Science 24 was used. Fifty-five mothers of children with diabetes were evaluated. Over 33% of the mothers were overweight and reported a regular perception of quality of life. Higher BMI was associated with poorer perception of quality of life in the psychological and self-assessment domains, and longer diagnosis time was associated with better perception of quality of life in the physical, psychological, and environmental domains. Therefore, it is understood that actions aimed at improving the quality of life of these mothers are necessary.

Unpaid family caregivers might suffer losses in income as a result of care provision. Here we used data from the baseline survey of the China Health and Retirement Longitudinal Study to assess the relationship between hours of weekly caregiving provided to grandchildren/parents/parents-in-law and individual’s monthly employment income. Our study sample comprised 3,718 middle-aged Chinese adults who were of working age (45-60 years). For women and men separately, we used a likelihood-based method to determine a caregiving threshold in a two-stage Heckman selection procedure. Instrumental variables were used to rule out the endogeneity of caregiving hours. Our analysis revealed a negative association between caregiving and income for women that depended on a caregiving threshold of 63-hours per week. There was an absence of caregiving-income relationship among men. These results offer new insights into the opportunity costs of unpaid caregiving and support tailored policies to protect the financial well-being of female caregivers.

Informal caregivers are essential in supporting stroke survivors' recovery, but it is unclear whether community interventions can promote healthy eating behaviors and social participation among stroke survivors and their caregivers. The Train-Your-Brain (TYB) program's impact on adherence to national dietary guidelines and social participation among informal caregivers and stroke survivors were assessed in a quasi-experimental study. The TYB program had nine sessions, with one focusing on healthy lifestyle. Participants were prompted to discuss the topics covered, leading to social participation. Dietary habits were assessed using fruits and vegetables consumption questions, while social participation was measured using the Social Impact Measurement Framework. Mann-Whitney U-test and Wilcoxon Signed Rank Test were utilized to analyze the data. Eighteen informal caregivers and 27 stroke survivors participated in the program. Results showed a significant increase in fruit and vegetable intake and social participation in informal caregivers after the program, but there were no significant changes in stroke survivors. Informal caregivers play a crucial role in stroke survivors' lifestyle habits and in encouraging social connections with other stroke survivors. Thus, healthcare professionals should prioritize caregiver support and education to facilitate long-term dietary and social changes that can positively impact stroke survivor's recovery and quality of life.

Background: Caring for individuals with mental disorders poses significant challenges for caregivers, often leading to compromised quality of life and mental health issues such as stress, anxiety, and depression. This study aims to assess the extent of these challenges among caregivers in Greece, identifying which demographic factors influence their well-being. Method: A total of 157 caregivers were surveyed using the SF-12 Health Survey for quality of life assessment and the DASS-21 questionnaire for evaluating stress, anxiety, and depression symptoms. T-tests, Kruskal-Wallis tests, Pearson correlation coefficients, and regression analyses were applied to understand the associations between demographics, quality of life, and mental health outcomes. Results: The study found that caregivers, especially women and younger individuals, faced high levels of mental health challenges. Marital status, educational level, and employment status also significantly influenced caregivers' well-being. Depression was the most significant factor negatively correlating with the mental component of quality of life. The magnitude of burden experienced by caregivers highlighted the urgency for targeted social and financial support, as well as strategic treatment programs that consider caregiver well-being. Conclusions: Caregivers of individuals with mental disorders endure significant stress, anxiety, and depression, influencing their quality of life. Demographic factors such as age, gender, marital status, education, and employment status have notable impacts. Findings emphasize the need for society-wide recognition of caregivers' roles and the creation of comprehensive support and intervention programs to alleviate their burden, particularly in the context of the COVID-19 pandemic.

Objective: The COVID-19 pandemic inferred on neuro-oncological patients (PTS) and the caregivers regarding tumor care and emotional functioning. This study aimed to understand how COVID-19 affects their psychological state and relations between PTS and health personnel in neuro-oncology. Methods: A cross-sectional study on neuro-oncological PTS and their caregivers. Results: A total of 162 PTS and 66 caregivers completed the questionnaire. The 37.5% of PTS perceived greater risk of contracting the COVID-19 compared to the general population. On the 0-10 scale, PTS tumor-related anxiety score was 5.8 and COVID-related 4.6. The caregivers reported 7.7 and 5.5 respectively. The QoL was described at least as good in 75% of both PTS and caregivers; the caregivers’ care burden increased in 22.7% during the pandemic, with no correlation with QoL. Future perception often changed both in PTS and in the caregivers. Cancer treatment schedule was changed in 18.5%, including for PTS decision. However, the 93.5% of PTS was satisfied with the overall care. Conclusion: A considerable proportion of PTS and caregivers still perceived the tumor disease as more burdensome than the pandemic, and perceived their future as more uncertain. Such data rinforce the need to build a proficient alliance between PTS and health personnel.

The rising prevalence of autism internationally has been accompanied with an increased appreciation of the poorer mental health experienced by people with this condition and also of their family care-givers. In particular higher incidences of anxiety and depression are reported in high income nations and these conditions are likely to be under-recognised and under-reported in lower resourced regions or countries. Mainstream mental health services seem to be ill-equipped to respond adequately to the needs of autistic persons and their care-givers. This scoping review of 30 recently published literature reviews covering over 1,000 journal articles, summarises the insights and strategies that have been shown to promote the mental health and emotional wellbeing of autistic persons. In particular, a focus on family-centred, community-based supports is needed that aim to enhance social communication, extend social connections and promote an individual’s self-esteem, self-determination and social motivation. These low-cost interventions are especially pertinent in low resourced settings but they can be used internationally to prevent mental illness and assist in the treatment of anxiety and depression in autistic persons and their family carers. The priority is to focus on primary care responses with cross-sectoral working rather than investing in high-cost psychiatric provision.

Background: Caregivers of asthmatic children have poor knowledge of proper asthma man-agement practices in Nigeria. The objective of this study was to examine the knowledge, attitudes, and practice behaviors of caregivers in the management of asthma in children under age 5 in Oyo State, Nigeria, using the Health Belief Model. Methods: While a mixed method was used in the original research, this brief describes the quantitative method used in this study to evaluate caregiver’s asthma management practices A 55-item questionnaire investigating childhood asthma knowledge, attitude, and practice was administered during child welfare clinic visits to 118 caregivers. To gain insights into caregivers’ beliefs about asthma management practice behavior, focus group discussions were conducted among two groups of 10 caregivers. Data were analyzed using the IBM SPSS Version 25.0. Statistical significance was set at p < 0.05 and 95% CI. Result: More than 70% of caregivers knew that asthma is associated with airway inflammation and about 90% knew that Flu infections triggered asthma attacks in their children. Overall, 70% of caregivers from the focus group discussions found preventive measures including avoidance of common triggers like dust and smoke, wearing warm clothes in cold weather, environmental sanitation, regular visits to the clinic, and medication adherence helpful. Similarly, caregivers reported the use of quick-to-relieve OTC drugs rather than seeking medical attention. Caregivers with higher income (OR = 3.0; 95% CI = 1.558-5.778; P = 0.001) were 3.0 times more likely to practice proper asthma behavior than those with a lesser income. Conclusion: Despite having moderate knowledge of asthma, caregivers of asthmatic children had wrong perceptions and inadequate knowledge about preventive and treatment options. An optimal public health approach is needed to identify and target underserved communities that suffer poorer asthma outcomes and improve caregivers’ knowledge and skills in asthma management practices. The need to pay more attention to the proper management of childhood asthma among caregivers in underserved populations cannot be overemphasized.

Background:Caregiving for individuals with neurological disease involves providing physical, emotional, and social support, which can be a challenging and stressful experience. This study aims to compare the caregivers' burden, including the impact on mental and physical health, social support, and quality of life, in different neurodegenerative disorders. Methods:Fifty-five primary caregivers (F=41;mean age=53.07±12.29) of patients with Parkinson's Disease (PD=26), Multiple System Atrophy (MSA=16), and Amyotrophic Lateral Sclerosis (ALS=13), took part in the study. Standardized screening scales for the quality of life (EQ-5D/EQ-VAS and PQoL), levels of the caregiving burden (CBI and FSQ), and the assessment of the anxiety-depressive axis (HADS) were administered. Results: The mean CBI score was higher for caregivers of MSA patients (28.81±21.90) and ALS (25.15±16.23) than for caregivers of PD patients (16.08±10.34; p=0.036). Critical burden (cut-off>36) was present in the caregivers of MSA (31.3%), ALS (23.1%), and PD (19.2%) patients. Caregivers of patients with ALS had a worse perception of quality of life (EQ-5D total score) than caregivers of patients with MSA and PD (p

Background: Carers (or care partners) of adults in LTC contribute substantially to the health and well-being of their loved ones by providing physical care, emotional support, and companionship. Despite their critical role, little is known about how caregivers have been impacted by the pandemic. The purpose of this study was to explore the lived experiences of caregivers of people living in long-term care (LTC) homes during the initial phases of the COVID-19 pandemic and potential supports and resources needed to improve caregivers’ quality of life.Design: An interpretive descriptive approach that incorporated photovoice method was used. Methods: Using purposive sampling strategy, six family carers in Ontario, Canada were recruited between September and December 2021. Over a four-week period, caregivers took pictures depicting their experience of the pandemic that were shared in a virtual focus group. Visual and text data were analyzed using thematic analysis with an inductive approach.Findings: Caregivers expressed feelings of frustration, confusion, and joy. Emerging themes included: (i) feeling like a “criminal” amidst visitor restrictions and rules; (ii) experiencing uncertainty and disappointment in the quality of care of long-term care homes; (iii) going through burnout; and (iv) focusing on small joys and cherished memories.Conclusions: The combination of visual and textual methods provided unique insight into the mental distress, isolation, and intense emotional burdens experienced by caregivers during the pandemic. Impact: Our findings underscore the need for LTC organizations to work in unison with caregivers to optimize the care of residents and support mental health of caregivers.

Background: Since 2000, vaccine coverage in Sub-Saharan Africa (SSA) has surpassed multiple milestones. Its contribution to global health, especially in low-middle-income countries is one of the achievements in global governance of modern medicine, averting 2-3 million child deaths every year. However, in Nigeria, vaccine-preventable-diseases still account for one in eight child deaths before their fifth-year birthday and remains one of the ten countries where 4.3 million children under five are without complete immunization. The reasons for declining childhood vaccine demand are unclear. Therefore, the goal of this contribution is to shed light on the reasons to set a foundation for future interventions. Methods: Four focus group discussions were conducted. The primary targets were mothers of children 0 – 12 months old in Nigeria. A simplified quota sampling approach was used to select mothers in four geographical clusters of Nigeria’s Federal Capital Territory. At least six mothers from each cluster were randomly included, giving a total of 24 participants. An interview guide developed from the 5C psychological antecedence model was used (assessing confidence, complacency, calculation, constraints, collective responsibility); two additional variables were included that had proved meaningful in previous work (religion and masculinity). The data were analyzed using meta-aggregation approach such as framework synthesis, which summarized data in a stepwise fashion. Results: The sample was generally relatively positive towards vaccination. Still, mothers reported low trust in vaccine safety and the healthcare system (confidence). Yet, they had great interest in seeking additional information during antenatal visits (calculation), difficulties in prioritizing vaccination over other equally competing priorities (constraints) and were aware that vaccination translates into overall community health and wellbeing (collective responsibility). They had a bias towards God as ultimate giver of good health (religion) and reported that their husbands played a dominant role in vaccination decision-making (masculinity). Mothers perceived their children vulnerable to disease outbreaks, which motivated them to get them vaccinated (complacency). Conclusion: The 5C model and the added determinants provided a useful qualitative tool for understanding mothers’ vaccination decision-making in low resources settings.

This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed-methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders’ verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation. Healthcare professionals (n = 93) were surveyed to elicit their responses to learning through poetry and its acceptability as a learning tool. Poems conveyed a shared narrative of different aspects of lived experience, often owing to atypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuous struggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-create and respond to the poems, whilst group interviews revealed people’s experiences of the research poetry were characterised by reflection on lived experience, curiosity and exploration. Healthcare professionals’ responses reinforced the poetry’s capacity to stimulate cognitive and affective learning specific to rare dementia support and prompt both empathy and critical thinking in practice. As the largest poetry-based study that we are aware of, this novel accessible approach of creating group poems yielded substantial information about the experiences and needs of those affected by rarer dementia and how poetry can contribute to healthcare education and training.

Dementia patients express a set of problematic and deteriorating symptoms, along self-care dependency. Overtime, the mental health of family caregivers of persons with dementia may suffer, putting them at a high risk for psychopathology, which may be associated with endangered wellbeing of demented people. This cross-sectional study examined the psychometric properties of the Depression Anxiety Stress Scale 8-items (DASS-8), DASS-12, DASS-21 in a convenient sample of 571 caregivers from northern Italy and southern Switzerland (Mean age = 53, SD = 12, range = 24–89 years). A bifactor structure of the three measures had the best fit; some items of the DASS-12/DASS-21 failed to load on their domain-specific factors. The three-factor structure was invariant across various groups (e.g., gender, education, etc.), expressed adequate reliability and convergent validity, and had strong positive correlation with the 3-item UCLA Loneliness Scale (UCLALS3). Dementia type had no effect on distress scores, which were higher among females, adult children caregivers, those caring for dependent patients, and those who received help with care. For 54.9 and 38.8% of the latter, care was provided by relatives and health professionals, respectively. Since the DASS-8 expresses adequate psychometrics comparable with the DASS-21, it may be used as a brief measure of distress in this population.