Accounts of children’s experiences of living with a heavy-drinking parent: a qualitative study

Knowledge gap exists among caregivers of adults compared to caregivers of children with epilepsy: A comparative analysis from a low resource setting

Developing a deep and contextualised understanding of risk is important for public health responses to young people’s alcohol consumption, which is frequently positioned as an outcome of risky behaviour. This paper expands conceptualisations of risk to encompass its wider social and cultural context through a social practice exploration of young people’s controlled and managed intoxicated alcohol consumption practice. We report data from a fourteen-month qualitative study of the alcohol consumption practices of 23 young people in England, drawing on group interviews and social media interactions. Our findings provide a nuanced understanding of risk-taking, demonstrating that risk is an important aspect of the ongoing participation and performance in alcohol consumption practice and that health information and advice can be and was frequently incorporated into drinking practice without contributing to fundamental change. This raises new questions about the effectiveness of health interventions that focus on the individual, discussed in the final section of the paper.

BackgroundIn Sub-Saharan Africa, 41 to 58% of the caregivers of children with disabilities experience psychological distress and have poor mental well-being. Cognitive behavioural therapy (CBT) has a moderate effect on improving mental well-being. However, no study has examined its effects among caregivers of children with disabilities at home and in schools. This study evaluated the effectiveness of CBT in improving mental well-being among caregivers of children with disabilities in urban Uganda.MethodsWe conducted a two-arm cluster-randomized controlled trial in 11 schools across the Kampala district of Uganda. The intervention was a multi-modal CBT training program conducted for six months among 392 home and school caregivers of children with disabilities. In the first three months, caregivers received group-based CBT, and in the next three months, they received phone-based CBT. We used generalized linear mixed-effects regression to examine the differences in the mental well-being of caregivers in the control group vs those in the intervention group.ResultsHome caregivers’ mental well-being was significantly higher after phone-based CBT (unstandardized coefficient of the estimate (B) = 4.31, 95% CI = 1.18-6.82; P < 0.001, Cohen’s D (d) = 0.27). School caregivers’ mental well-being was significantly higher after group-based CBT (B = 3.98, 95% CI = 0.22-7.47; P = 0.038, d = 0.25).ConclusionsGroup-based CBT improved mental well-being among school caregivers, and phone-based CBT improved mental well-being among home caregivers. Interventions targeting school caregivers of children with disabilities should employ group settings and those targeting home caregivers should utilize peer-to-peer networks to enhance the caregivers’ mental well-being.RegistrationThe study protocol was registered with UMIN Clinical Trials Registry (UMIN-CTR). Trial ID: UMIN000040912.

The caregivers of an autistic child experience reminiscent level of anxiety, pressure and mood swings that have major negative impact on their own overall physical and mental health and well-being as well as the health of their special children. Adequate level of social support and positive personality traits enhances the mental well-being of the caregivers and with the help of this they can achieve inner strength and well-being to overcome ups and downs of their life. The present research study examined the impact of HEXACO personality traits and social support on mental well-being among the One hundred (100) caregivers of children with ASD. Study also highlighted that the mental health of the caregivers is equally important as the physical health as well as not only the health of the children is important but health of the caregivers is more important for normal functioning. HEXACO-PI-R, Multidimensional Scale of Perceived Social Support and Warwick-Edinburgh Mental Well-being Scale used as a measuring tool in this study. Data were collected by using purposive sampling technique. Pearson Product Moment Correlation Coefficient and Multiple Linear Regression Analysis (Stepwise) administer to test the results. Results indicated strong and healthy social support, positive mental health and dispositions helps caregivers to tackle the stressful situations easily and prepare them to face challenges related to the behavior of their special child. It also aid caregivers to stay resilient and confident in any adverse situations. Their psychological health difficulties can be reduced by behavioral interventions and various orientation and awareness programs, fixed avocation and higher income, decreased symptomatic behaviors of ill reliant.

Burden of disease in patients with a history of status epilepticus and their caregivers

Support needs, coping, and stress among parents and caregivers of people with Down syndrome

The time consuming nature of phenylketonuria: A cross-sectional study investigating time burden and costs of phenylketonuria in the Netherlands

This study surveyed individuals and caregivers of children who received teplizumab at stage 2 type 1 diabetes (T1D) to garner real-world experiences and their health outlook for the future following treatment with the first approved disease-modifying immune therapy for delaying the onset of Stage 3 T1D. This was a cross-sectional, observational, online survey (conducted September-October 2024) of adults (≥18 years) and caregivers of children (8-17 years) who received teplizumab while participating in the US COMPASS patient support program. Questions pertained to demographics, health history, T1D screening, the decision to take teplizumab, treatment, post-treatment experience, outlook on prognosis and self-reported health status. All data were summarized using descriptive statistics. A total of 47/116 invited individuals responded (30 adults, 17 caregivers of children). Almost half of respondents had a family history of T1D, and 36% reported autoimmune comorbidities. The top reason for both screening for T1D and receiving teplizumab was for a chance at delaying Stage 3 T1D. Although respondents expressed continued concern over diabetes progression, 87% felt grateful to receive teplizumab, 72% felt it would help slow down the disease, 60% felt it would make T1D easier to manage and most (>80%) would recommend treatment/make the same decision for another family member. Individuals living with or caring for someone who received teplizumab felt grateful for the opportunity to delay disease or make it easier to manage following teplizumab, with most agreeing they would recommend teplizumab and make the same decision for family in their situation. Type 1 diabetes (T1D) happens when the body destroys cells in the pancreas that make insulin. This ultimately causes high blood sugar. People with T1D often worry about the long-term effects of the disease. Teplizumab is the first FDA-approved treatment that delays the onset of high blood sugar in people in the early stages of T1D-when there are signs of cell damage and mild increases in blood sugar. We surveyed adults (N = 30) and caregivers (N = 17) of children treated with teplizumab about their journey before and after treatment. More than half of adults were initially told they might have a different type of diabetes, usually type 2, before being accurately diagnosed with early-stage T1D. Doctors specializing in diabetes were most often the ones who recommended screening for T1D. The most common reason to screen was a chance for more time before the onset of high blood sugar. Greater than 80% of people were grateful they or their child had the opportunity to receive teplizumab, and most would recommend it to others in a similar situation. After receiving teplizumab, most people still worried about their blood sugar and measured it frequently. Most thought that teplizumab would delay the disease progression to symptoms, and more than half thought teplizumab would make T1D easier to manage. These findings are the first to describe the journey of adults and caregivers of children treated with teplizumab, their reasons for screening, and their beliefs about the future.

Strategies to Support Physical Activity for Parents and Caregivers of Young Children

Background High incidence, ageing, and advancements in early detection and clinical treatment have led to a growing breast cancer survivor population, particularly in developed countries. Sleep problems are common and persist in this population, affecting over 50% of breast cancer survivors. Good sleep health is characterized by sleep duration, sleep timing and sleep quality, and these three dimensions do not necessarily correlate with each other. This analysis aimed to investigate the associations of sleep health, characterized by sleep duration, sleep timing, and a range of metrics for sleep quality (latency, efficient, disturbance, medication, daytime dysfunction) with physical and mental well-being in women with newly diagnosed breast cancer. Methods Newly diagnosed breast cancer patients, with early-stage disease were recruited between 2012-2019 in Edmonton and Calgary, Canada, and completed the Pittsburg Sleep Quality Index (PSQI) to assess the habitual sleep duration and timing, as well as sleep latency, efficiency, disturbance, medication and daytime dysfunction. To measure quality of life, participants completed the SF-36 version-2 to assess their physical and mental well-being. Multivariable linear regressions were used to estimate the association of sleep characteristics with physical and mental well-being, adjusting for socio-demographic, disease, clinical and lifestyle behaviour factors. Results Among 1409 breast cancer survivors, 41% reported short or long sleep duration ( &amp;lt; 6 or ≥9 h/d), 41% reported habitual bedtimes after 11pm, 56% reported sleep efficiency being &amp;lt; 85%, 80% reported fairly good (vs. very good) sleep disturbance, 35% reported taking sleep medication in the past month, and 71% reported fairly good, fairly bad or very bad (vs. very good) daytime function. In the multivariable model, short sleep (≤6/d) was associated with worse mental well-being (-3.6, 95%CI: -4.7,-2.4) but not physical well-being (-1.5, 95%CI: -2.3,-0.7). No clinically meaningful differences in quality of life were found for sleep timing. Metrics characterizing suboptimal sleep quality were associated with poorer physical and mental well-being, with stronger associations observed for mental health well-being. Notably, only 20% and 29% women were classified as “very good” in sleep disturbance and daytime dysfunction measures, respectively. Nevertheless, even “fairly good” sleep disturbance and daytime dysfunction were associated with statistically and clinically meaningful significant poorer physical (-3, 95%CI: -3.8,-2.2) and mental (-8, 95%CI: -9,-7) well-being. Conclusion Sleep timing does not appear to affect the quality of life in a clinically meaningful manner in women newly diagnosed with breast cancer. In contrast, short sleep duration and worse sleep quality were strongly associated with poorer mental well-being in these women. Targeted interventions to improve sleep may lead to improvements in the quality of life among women with newly diagnosed breast cancer. Table 1. Association of Sleep Characteristics with SF-36 Measured Quality of Life, Physical Well-Being. Table 2. Association of Sleep Characteristics with SF-36 Measured Quality of Life, Mental Well-Being. Citation Format: Lin Yang, Qinggang Wang, Jessica McNeil, Charles Matthews, Leanne Dickau, Jeff Vallance, Margaret McNeely, S. Nicole Culos-Reed, Karen Kopciuk, Kerry Courneya, Christine Friedenreich. Associations of sleep health with quality of life among women with newly diagnosed breast cancer: baseline results from the AMBER cohort study [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PS02-04.

This study evaluated the quality of life among primary caregivers of Taiwanese children with brain tumors and examined the factors associated with their quality of life. Data were obtained from the Impact of Childhood Cancer on the Chinese Family survey conducted by the Taiwan Childhood Cancer Foundation in 2001. This analysis included 30 families. Quality of life among primary caregivers was measured by the World Health Organization Questionnaire on Quality of Life: BREF-Taiwan version. Quality-of-life scores for various subgroups were compared using the Mann-Whitney U test or the Kruskal-Wallis test. The scores in the physical health and psychological domains for caregivers of children with brain tumors were lower than the norm scores for healthy adults. Caregivers of boys had higher scores in social relationships. Caregivers of children within 5 years of the brain tumor diagnosis had higher scores in the physical health domain. The child's treatment stage was associated with caregiver scores in the physical health and psychological domains. The caregiver's psychological domain was negatively affected by a low education level. The health status of caregivers was positively associated with their quality of life in physical health, psychological status, social relationships, and environment domains. The lower quality of life among caregivers indicates the need for promoting an awareness in healthcare providers of the impact that having a child with brain tumor has on the quality of life. Family-centered interventions are implicated. Healthcare providers should elicit information regarding the caregiver's perceived physical health and intervene early. This may help to improve the quality of life among caregivers of children with brain tumors.

Psychometric properties of the Kingston Caregiver Stress Scale in Romanian caregivers of children and adults with disabilities

Purpose: Intellectual disability is an umbrella term that focuses on the difficulties in understanding, comprehending, and applying things. Children having intellectual disabilities will have difficulty in adaptive functioning like understanding, communicating, identifying, learning, giving attention, or thinking. The main aim was to identify and intervene in the mental well-being of the caretakers and parents having intellectually disabled children. To elicit parents' perspectives on benefits for children having intellectual disability in connection with demographic details, formative years, resources, and to confront the consequences of upbringing a child with intellectual disability. Design/Methodology/Approach: Systematic literature, resulting in the publication of studies that centered on the mental health of parents and caregivers of children having intellectual disability. Systematic literature scrutiny was performed using the search words intellectually disabled children, caregiver/ parents/ mother and mental health and well-being in the electronic databases Research gate, Academia, Google Scholar, and Psyc Info. Findings/Result: As a result of caring for their challenged children, parents frequently experience physical and psychological discomfort, negatively impacting their psychological well-being in daily life. Parents of children with severe disabilities may suffer more stress while caring for them since they demand more physical exertion. For a variety of reasons, it is considered that parents' physical and psychological well-being has a direct impact on their children. This article reviews the various literature and the interpretation can be useful for clinical purpose to improve, understand issues among caregivers of disabled children and also to provide future directions, to improve parental well-being by reducing parental stress Parents of children with intellectual disabilities are more likely to suffer from mental health problems, according to research. Originality/Value: This review presents key findings from studies that show parental stress and the need for psycho education to help parents give their children with intellectual disabilities with evidence-based assistance and intervention. Given the increased risk of stress, anxiety, and depression that this demographic has been linked to, we first address stressors and challenges associated with intellectual disability, as well as the future direction of the present research. Following that, we describe contemporary trends and difficulties and seek to fill in gaps in the existing literature, indicating that more research is needed. We conclude that future research on psychoeducation intervention and relaxation therapy for improving the subjective wellbeing of caregivers of intellectually challenged children is needed. Implementing parental interventions in parallel with the child's interventions may raise mental health. Paper Type: Systematic literature review-based analysis.

Introduction: Cancer is a disease where cell proliferation occurs abnormally, ignoring signs of growth regulation. The child with cancer needs the help of the caregiver, their greatest support. Objective: to unveil the feelings faced by caregivers of children with cancer at a University Hospital. Methodology: descriptive, exploratory, qualitative study, carried out at the Pediatric Oncology Center of the Oswaldo Cruz University Hospital in Recife / PE. The population was constituted by the main caregivers of hospitalized children with cancer. Survey conducted in June 2017, through an interview, with a population of 10 caregivers. The data were submitted to Bardin content analysis. Results and Discussion: as results, four thematic categories emerged: Caregiver perception about Cancer; Family relations in the context of the disease; Changes faced after the discovery of the diagnosis; Feelings in the context of the disease. The caregiver’s understanding and understanding of the illness allows him to optimize his suffering and encourages him to face the obstacles encountered during treatment. Conclusion: caregivers experience a long process of diagnosis at the end of treatment. They present feelings that blend between guilt, fear, sadness, exhaustion, hope, faith and tranquility.

Our objective was to compare the effects on mental and physical wellbeing, health related quality of life and long-term adherence to physical activity, of participation in physical activity in natural environments compared with physical activity indoors. We conducted a systematic review using the following data sources: Medline, Embase, Psychinfo, GreenFILE, SportDISCUS, The Cochrane Library, Science Citation Index Expanded, Social Sciences Citation Index, Arts and Humanities Citation Index, Conference Proceedings Citation Index--Science and BIOSIS from inception to June 2010. Internet searches of relevant Web sites, hand searches of relevant journals, and the reference lists of included papers and other review papers identified in the search were also searched for relevant information. Controlled trials (randomized and nonrandomized) were included. To be eligible trials had to compare the effects of outdoor exercise initiatives with those conducted indoors and report on at least one physical or mental wellbeing outcome in adults or children. Screening of articles for inclusion, data extraction, and quality appraisal were performed by one reviewer and checked by a second with discrepancies resolved by discussion with a third if necessary. Due to the heterogeneity of identified studies a narrative synthesis was performed. Eleven trials (833 adults) were included. Most participants (6 trials; 523 adults) were young students. Study entry criteria and methods were sparsely reported. All interventions consisted of a single episode of walking or running indoors with the same activity at a similar level conducted outdoors on a separate occasion. A total of 13 different outcome measures were used to evaluate the effects of exercise on mental wellbeing, and 4 outcome measures were used to assess attitude to exercise. Most trials (n = 9) showed some improvement in mental wellbeing on one or other of the outcome measures. Compared with exercising indoors, exercising in natural environments was associated with greater feelings of revitalization and positive engagement, decreases in tension, confusion, anger, and depression, and increased energy. However, the results suggested that feelings of calmness may be decreased following outdoor exercise. Participants reported greater enjoyment and satisfaction with outdoor activity and declared a greater intent to repeat the activity at a later date. None of the identified studies measured the effects of physical activity on physical wellbeing or the effect of natural environments on exercise adherence. The hypothesis that there are added beneficial effects to be gained from performing physical activity outdoors in natural environments is very appealing and has generated considerable interest. This review has shown some promising effects on self-reported mental wellbeing immediately following exercise in nature which are not seen following the same exercise indoors. However, the interpretation and extrapolation of these findings is hampered by the poor methodological quality of the available evidence and the heterogeneity of outcome measures employed. The review demonstrates the paucity of high quality evidence on which to base recommendations and reveals an undoubted need for further research in this area. Large, well designed, longer term trials in populations who might benefit most from the potential advantages of outdoor exercise are needed to fully elucidate the effects on mental and physical wellbeing. The influence of these effects on the sustainability of physical activity initiatives also awaits investigation.