Younger Caregivers Research Articles

Voices of Hope: Leveraging Think-Aloud Cognitive Interviews to Develop a Hope Assessment Tool for Young People Living with Chronic Health Conditions.

Hope is a universal, multidimensional, and nuanced concept that may have specific meaning for young people living with chronic health conditions anticipated to last into adulthood. We previously identified definitions of hope for youth living with chronic health conditions derived from young people's and their caregivers' own words. Here, we aimed to develop a hope assessment tool to facilitate the future evaluation of interventions to support wellness and health for young people growing up with chronic health conditions; Methods: We developed Likert-type scale questions using the young people's and caregivers' definitions of hope and applied the think-aloud cognitive interview method to assess understanding and to inform sequential iteration. Interviews were recorded and insights from participant interviews were analyzed thematically. In total, 11 youth (age 12-16 years) with various chronic health conditions completed surveys and interviews over three iteration cycles. Responses to the six-point Likert-scale questions ranged from 1 (none of the time) to 6 (all of the time) (median 5). All of the young people (n = 11) reported that they do things they enjoy, either all of the time or most of the time. In contrast, only 36% felt energetic, either all or most of the time. Three themes were identified: my body and hope; my identity, self-image, and hope; and my world and hope. In addition to gaining important feedback that allowed us to improve item word choice to maximize assessment tool understanding, we gained valuable insights into the multidimensional construct of hope. Thematic analysis revealed the importance of physical symptoms and identity to the meaning of hope in the context of a young person's life. Our new hope assessment tool derived from the young people's own definition of hope has face and content validity for use in clinical and research settings to evaluate hope among pediatric patients living with chronic health conditions.

Effectiveness of transitional care in Inflammatory Bowel Disease; Development, Validation, and Initial outcomes of a Transition Success Score.

The effectiveness of transition programs from paediatric to adult healthcare in adolescents with inflammatory bowel disease is not clear, as prospective studies using validated outcome measures for transition are lacking. This study aimed to develop and validate a quantitative Transition Success Score, and to apply it in a multicenter setting to assess the effectiveness of transitional care. The Top 10 outcome items related to successful transition, identified through an international Delphi study with IBD stakeholders, were integrated into a generic questionnaire, the Transition Success Score. In a prospective, multicenter study, Transition Success Score was scored by adult healthcare providers, young adult patients and caregivers, 9-15 months after transfer of care. In seven Dutch hospitals, 160 patients completed the Transition Success Score. The mean score was 25 (range 17-27), 25.6% of patients achieving maximum score. Hypothesis testing for construct validity revealed significant associations with characteristics related to transitional care, such as knowledge, independence, and quality of life (p <0.005). Structural validation indicated the score was most effective at discerning lower levels of transition success. Internal consistency was acceptable (0.64). High disease burden, exacerbation during or after transfer, and certain personality profiles were associated with lower scores. The Transition Success Score serves as a quantitative tool to evaluate the effectiveness of transitional care interventions and to identify inflammatory bowel disease patients at risk of encountering challenges during the transition to adult healthcare.

Agreement for posttraumatic stress symptoms among unaccompanied young refugees and professional caregivers

ABSTRACT Background: Prevalence rates for posttraumatic stress symptoms (PTSS) in unaccompanied young refugees (UYRs) are high. Research with biological parents indicates low agreement rates between self and caregiver reports for PTSS, although caregivers play an important role as gatekeepers to ensure appropriate treatment. Objective: This study examines youth and caregiver agreement on the endorsement of different trauma types, the PTSS severity score and symptom clusters, as well as the potential association between youth factors (age, comorbidity, and duration in facility) and disagreement. Method: The sample consisted of N = 610 UYRs, aged M = 16.75 (SD = 1.33, range: 12–20) years. Of these, 91.0% were male, and 43.4% were from Afghanistan, currently residing in German children and youth welfare facilities. Results: Agreement rates across trauma types were poor (accidental trauma: Cohen’s k = .13; community violence: Cohen’s k = .07; domestic violence: Cohen’s k = .19; sexual abuse: Cohen’s k = .38). Agreement rates for the PTSS severity score (ICC = .22) and symptom clusters were poor (re-experiencing: ICC = .27; avoidance: ICC = .02; negative alterations in cognitions and mood ICC = .12; hyperarousal: ICC = .25), with youth reporting significantly higher scores. Regression models showed that having comorbid symptoms and a shorter duration in the facility were associated with higher disagreement at the PTSS severity score (Adjusted ­R 2 = .21) and across symptom clusters (re-experiencing: Adjusted ­R 2 = .13; avoidance: Adjusted ­R 2 = .07; negative alterations in cognitions and mood: Adjusted ­R 2 = .16; hyperarousal: Adjusted­ R 2 = .16). Age was not significantly associated with disagreement rates. Conclusion: It is important to enhance the awareness and comprehension of caregivers regarding recognition of mental illnesses and their symptoms as well as assessing mental health among UYRs.

Multisystemic therapy for young people involved in or at risk of child criminal exploitation: Young people and Caregivers' perspectives

AbstractChild criminal exploitation is a form of child abuse, linked to youth gang involvement and with long‐lasting serious consequences for communities. Multisystemic therapy (MST) is a systemic intervention for antisocial behaviour with an extensive evidence base but there is limited research focussing on gang involved or criminally exploited young people. Through semi‐structured interviews, this study qualitatively explored young people at risk of exploitation (n = 4) and their caregivers (n = 6) experience of MST across three sites in England. Four themes emerged through thematic analysis: changes experienced; improved caregiver‐young person relationship; facilitators of change; and barriers to change. The process of MST facilitated behaviour change and supported development of support networks for caregivers and engagement with prosocial young peers. Barriers to change included young people's association with negative adults and frequent peer relationship changes. Further exploration of the complex associations between negative adults and young people at risk of exploitation is recommended.

Effects of Digital Picture Books on Young Children Undergoing Cardiac Catheterisation and Their Family Caregivers: A Randomised Controlled Trial.

To assess the impact of digital picture books on preoperative anxiety, pain and sleep quality in young children undergoing cardiac catheterisation and the anxiety of their family caregivers. A randomised, single-blinded, two-arm, parallel-group controlled trial. Participants are young children aged 2-7 years with congenital heart disease scheduled for cardiac catheterisation and their family caregivers. They were enrolled at Fujian Medical University Union Hospital between September 2022 and July 2023. They were randomised to either a control group receiving usual care or an intervention group receiving digital picture book sessions. Anxiety and pain levels were assessed using standardised scales, and sleep quality was measured using actigraphy. The study included 64 pairs of young children and family caregivers. Digital picture books significantly reduced preoperative anxiety and bandage removal pain in children and anxiety in family caregivers. However, there was no statistical difference in sleep quality between the intervention group and the control group. Digital picture books prove to be an effective intervention for reducing anxiety and pain in paediatric cardiac catheterisation patients and anxiety of their family caregivers. The intervention did not affect sleep quality, suggesting the need for additional strategies to address this aspect of the hospital experience. This study demonstrated the effectiveness of digitally illustrated books in reducing preoperative anxiety and pain in young children and anxiety in family caregivers. Digital picture books offer a creative and engaging way to help children and their families cope with the stress and anxiety associated with medical procedures. Further research in this area may lead to the development of more innovative and effective interventions for paediatric patients and their family caregivers. The study's impact lies in its innovative approach to addressing the psychological and emotional challenges faced by young children and their family caregivers during the stressful experience of cardiac catheterisation. By demonstrating the efficacy of digital picture books in significantly reducing preoperative anxiety and postoperative pain, the research presents a non-pharmacological, accessible and engaging intervention that can be seamlessly integrated into existing healthcare practices. The findings have the potential to transform paediatric care by offering a safe, developmentally appropriate and cost-effective method to support the emotional well-being of children and their families, thereby enhancing the overall patient experience and clinical outcomes. Moreover, the study's emphasis on family caregiver involvement underscores the importance of a holistic approach to care that considers the needs of both the patient and their support system. Children and their family caregivers were invited to provide valuable input which has been critical to the development of the intervention. The participant information sheet and consent form, as well as the consent/recruitment process, were reviewed by a consumer advisor advocate from the pilot study. CONSORT. Chinese clinical trial registry: ChiCTR2200063973. Registered on 22 September 2022, https://www.chictr.org.cn/showproj.html?proj=132833.

Experiences of siblings of children with profound intellectual and multiple disabilities: a qualitative systematic review protocol.

The objective of this systematic review is to explore the experiences of siblings of children with profound intellectual and multiple disabilities. With improved life expectancy of children with profound intellectual and multiple disabilities, the research focus is on care at home and in the community. Although parents are the primary caregivers, siblings often assume the role of young caregivers, bearing the weight of caregiving responsibilities. Thus, a synthesis of qualitative findings is required regarding their experiences to facilitate the development of effective support strategies. Siblings of children with profound intellectual and multiple disabilities will be included, defined as children with an IQ of ≤40 or mental development below a 2-year-old's level, coupled with an inability to walk independently. Disabled children aged <20 years will be included. There will be no restrictions on the siblings' age or type of relationship. Qualitative studies on experiences, caregiving burdens, challenges, difficulties, and frustration in daily life will be considered, covering home, community, school, and hospital settings for children with disabilities. We will follow the JBI methodology for systematic reviews of qualitative evidence. The search strategy will be conducted in 3 phases: initial limited search, comprehensive database search, and reference list search of the included articles. The MEDLINE, CINAHL Plus, PsycINFO, Scopus, Ichushi-Web, and CiNii databases will be searched, with no restrictions on language or publication date. Study selection, critical appraisal, data extraction, and data synthesis will be conducted by 2 independent reviewers. We will evaluate the final synthesized findings using the ConQual approach. PROSPERO CRD42024499042.

Moderate burden amongst caregivers posthip arthroscopy linked to younger caregiver age and task load: A cross-sectional survey study.

To evaluate the burden experienced by primary informal caregivers of patients who have undergone hip arthroscopy and to identify factors that predict increased caregiver burden. A cross-sectional study was conducted at a single academic hospital centre, enroling caregivers of patients who underwent hip arthroscopy between November 2018 and November 2023. Caregiver burden was assessed using the Caregiver Burden Inventory (CBI) survey. Multivariable linear regression models were used to identify predictors of caregiver burden, with the global CBI score serving as the primary outcome measure. Secondarily, open-ended survey questions were analyzed qualitatively to elucidate specific challenges and facilitators of caregiving, as reported by the caregivers themselves. The study involved 99 eligible caregivers (mean [standard deviation] age; 47 [11] years), 58% were female, and 85% were relatives of the patient. The median global CBI score was 13.0 (interquartile range: 8.0-22.4), indicating a moderate burden. Regression analyses demonstrated that younger caregiver age and a higher number of caregiving tasks were significant predictors of increased global burden. Additionally, nonweightbearing status of patients, female gender of caregivers and working full-time statistically significantly increased specific dimensions of caregiver burden. This study highlights the meaningful burden faced by caregivers of patients undergoing hip arthroscopy, despite its minimally invasive nature and outpatient setting. Identified risk factors such as younger caregiver age, female gender of the caregiver, nonweight-bearing status and increased caregiving tasks suggest targeted areas for intervention. The qualitative analysis revealed that caregivers struggle with time management and physical and emotional strain, yet better communication and practical support from healthcare teams could help to alleviate these challenges. Level IV, prognostic study.

Male-friendly counselling for young men: a thematic analysis of client and caregiver experiences of Menslink counselling

ABSTRACT Objective Across the lifespan, young males in Australia who are experiencing mental health problems report the lowest rates of seeking professional care. The aim of this qualitative study was to explore the experiences of young men and caregivers who received male-friendly counselling from a male-specific service in Australia Method Semi-structured interviews were conducted with 14 young men who had received counselling, and 27 caregivers who facilitated access to Menslink counselling in Canberra, Australia. Inductive thematic analysis was completed to analyse the data Results Four themes were developed: (1) engaged out of desperation; (2) appeal of Menslink service; (3) counsellor more like a professional “friend”; and (4) counsellor prioritised my autonomy Conclusion The findings confirm the suitability of previously recommended adaptations to counselling to engage young men and emphasise the role of caregivers in facilitating access to support. The themes also provide direction for practical adjustments to service delivery that mental health services and clinicians can make to address personal and structural barriers impacting young men’s service contact and engagement. This study contributes to the growing literature examining the benefits of male-friendly counselling practices in psychological treatment for young men.

Brief Report: Group-Based Trajectory Modeling to Determine Long-Term HIV Viral Load Trends Among Children With HIV in Kenya.

Identifying determinants of longitudinal HIV viral load (VL) trajectories using group-based trajectory modeling (GBTM) can inform clinical strategies and mechanisms of nonadherence among children. Children under 12 months old who were newly diagnosed with HIV were enrolled in the Optimizing Pediatric HIV therapy cohort (NCT00428116) from 2007 to 2010. Children initiated antiretroviral therapy at enrollment, and VL was assessed every 3 months for 24 months post-antiretroviral therapy and every 6 months thereafter up to 8 years old. VL trajectory groups were defined using GBTM. Fisher's exact and Kruskal-Wallis tests were used to determine the correlates of each trajectory group compared with the sustained-low VL group. Five VL trajectory groups were identified among 89 children with 522 VL visits from 6 to 24 months: sustained-low (63% of children), sustained-very-high (16%), sustained-high (9%), low-to-high (7%), and high-with-periods-of-low (6%). Children in the sustained-high group were more frequently on a first-line protease inhibitor (PI)-based regimen (63% vs 38%; P = 0.03) and had younger caregivers (median: 22 vs 28 years; P = 0.02). Among 54 children with 560 VL visits followed from 48 to 96 months, 5 trajectory groups were identified: sustained-low (74%), mid-range (4%), periods-of-low (7%), high-to-low (7%), and sustained-high (7%). Those in the high-to-low group had younger caregivers (21 vs 29 years; P = 0.01). GBTM identified unique VL patterns among children with unsuppressed VL. Caregiver and regimen-related characteristics were associated with patterns of nonsuppression. Younger caregivers may benefit from tailored counseling to help them support child antiretroviral therapy adherence. Palatable regimens are necessary for viral suppression among children with HIV.

TikTok and pediatric nephrology: content quality assessment of videos related to pediatric kidney disease and kidney transplant.

Social media platforms such as TikTok™ are key sources of health information for young patients and caregivers. Misinformation is prevalent on TikTok™ across healthcare fields, which can perpetuate false beliefs about medical care. Limited data exists on the reliability of pediatric nephrology TikTok™ content. This study aimed to describe the quality of medical content of TikTok™ Videos (TTVs), related to pediatric kidney disease and transplant. TTVs were selected using specific search terms and categorized into pediatric kidney disease and kidney transplant, excluding duplicate and adult-related content. The top 100 TTVs in each category, based on views, were analyzed. TTV characteristics were stratified by account type (physician, non-physician healthcare professional (HCP), non-HCP) and video aim (personal story, education, entertainment). DISCERN scoring, a validated questionnaire evaluating health information reliability, was conducted by 4 independent raters. Inter-rater reliability was assessed using a 2-way random effects model, and differences between content creator types were evaluated using one-way ANOVA and post-Hoc Tukey test. TTVs had a total of 12.5 million likes and 113.1 million views. Over 70% of videos were created by non-HCPs (n = 147/200). DISCERN scoring revealed low reliability of medical information across content creator types. TTVs created by physicians and non-physician HCPs about kidney disease had significantly higher mean DISCERN scores compared to those created by non-HCPs (2.85, p < 0.001 and 2.48, p = 0.005, respectively). Educators within the pediatric nephrology community must keep in mind the lack of reliability of medical information available on TikTok™ and coordinate collective efforts to consider utilizing TikTok™ for patient education.

Investigating the Differential Impact of Short- and Long-Term Informal Caregiving on Mental Health Across Adolescence: Data From the Tokyo Teen Cohort

PurposeYoung caregivers experience, on average, poorer mental health outcomes than non–caregiving young people. However, it is unknown to what extent these effects differ with age, or among short-term versus long-term caregivers. Using repeated assessment of young caregiving across multiple waves of a prospective adolescent cohort study, we conducted repeated cross-sectional analyses of caregiver status and contemporaneous depressive symptoms, self-harm, and suicidality in early to middle adolescence. MethodsFour waves of questionnaire data from a large, longitudinal population-based cohort study (Tokyo Teen Cohort) were analyzed. Caregiver status was collected from participants aged 10, 12, 14, and 16 years. Mental health outcomes assessed were depressive symptoms, self-harm and suicidal feelings. Logistic regression analyses were conducted assessing effects of a) young caregiver status and b) new, long-term, and ex-caregiver 2-year categorizations on mental health outcomes at 12, 14, and 16 years, both unadjusted and adjusted for potential confounders (sex, low income, single-parent household, and parental distress). ResultsDepressive symptoms were elevated among long-term caregivers at 14 years (unadjusted odds ratio (uOR): 3.11 [1.33–7.27], adjusted odds ratio (aOR): 2.49 [1.03–5.99]). Borderline associations between long-term caregiving and self-harm (uOR: 3.14 [1.06–9.35], aOR: 2.51 [0.82–7.63]) and suicidal feelings (uOR: 2.49 [0.98–6.34], aOR: 2.06 [0.80–5.33]) were detected at 16 years. No associations were found at age 12 years in primary analyses; sensitivity analyses indicated possible increased depressive symptoms. DiscussionYoung caregivers with long-term caregiving roles are at the greatest risk for negative mental health outcomes, with effects concentrated in later adolescence. These findings highlight urgent need for early identification and practical and psychological support for young people shouldering caregiving burdens.

“If you’re struggling, you don’t really care” – what affects the physical health of young people on child and adolescent mental health inpatient units? A qualitative study with service users and staff

BackgroundPhysical health inequalities of people with serious mental illness (SMI) have been labelled an international scandal; due to the 15–20-year reduction in life expectancy associated with poor physical health. This occurs at an early stage and evidence shows young people with and at risk for SMI are a particularly vulnerable group requiring intervention and support. However, most work has been conducted with adults and little is known about what affects physical health for young people, specifically those receiving inpatient care.MethodsWe conducted semi-structured qualitative interviews with 7 service users and 6 staff members (85% female, age 14–42) on a generic mental health inpatient unit for children and adolescents. Interviews aimed to identify how young people viewed theirphysical health and factors affecting physical health and lifestyle and identify any support needed to improve physical health. Thematic analysis was conducted. .ResultsThematic analysis revealed the main factors affecting physical health and lifestyle for young people. Three main themes were individual factors (subthemes were mental health symptoms, knowledge, attitudes and beliefs), environmental factors (subthemes were opportunities in a restricted environment and food provision), and the influence of others (subthemes were peers, staff, family members). These factors often overlapped and could promote a healthy lifestyle or combine to increase the risk of poor physical health. Young people discussed their preferences for physical health initiatives and what would help them to live a healthier lifestyle.ConclusionsPromoting physical health on inpatient units for young people is an important, yet neglected area of mental health research. We have identified a range of complex factors which have an impact on their physical health, and there is a pervasive need to address the barriers that young people experience to living a healthy lifestyle. There is an increasingly strong evidence base suggesting the benefits of physical health interventions to improve outcomes, and future work should identify ways to implement such interventions considering the barriers discussed in this article. Further collaborative research is needed with young people, clinical teams, caregivers, and commissioners to ensure improvements are made to clinical care provision and optimisation of the inpatient environment.

Study of Caregiver Burden in Continuous Ambulatory Peritoneal Dialysis

Background Increased caregiver burden undermines caregivers’ mental and physical health and is an under recognized but critical aspect for the success of continuous ambulatory peritoneal dialysis (CAPD). This study was undertaken to quantify and identify the factors determining CAPD caregiver burden. Materials and Methods A cross-sectional study was conducted among 51 caregivers of CAPD patients visiting the centers from July to August 2023. Caregiver burden score was determined using “Zarit Burden Interview” by interview method. Results The mean age of caregivers was 42.8 ± 10.83 years with 52.9% females. The mean Zarit burden score of the caregivers was 29.18 ± 11.81. Younger caregivers experienced significantly higher burden (r = −0.34, P = 0.013). Lesser educated caregivers were perceiving a higher burden. Lower socioeconomic strata people had significantly higher burden (P &lt; 0.001) and especially so when there was a loss in income attributed to caregiving. Patients who were covered by state insurance experienced a notably lower caregiver burden (19.2 ± 6.1) when compared to those who were self-financed (32.4 ± 11.08) or had company insurance (37.2 ± 13.6). Gender, religion, marital status, and type of family had no bearing on the caregiver burden. Conclusion Age, loss of income, education, and socioeconomic status are important determinants of caregiver burden. State sponsored program lowers caregiver burden significantly. A CAPD program should address these factors to mitigate caregiver burden.

The pervasive influence of systems of power on transition readiness for adult care in sickle cell disease: A qualitative study.

Adolescence and young adulthood are vulnerable developmental periods for individuals with sickle cell disease (SCD), particularly given the impact of social inequities, challenges with transitioning to adult healthcare services, and increased risk for morbidity and mortality. Systems of power, such as institutionalized and interpersonal manifestations of bias, could impact SCD transfer and engagement in adult care through their influence on healthcare transition readiness; yet research in this area is limited. To characterize how systems of power impact transition readiness factors described in the Social-ecological Model of AYA Readiness for Transition to Promote Health Equity (SMART-E) framework at the patient, caregiver, and practitioner levels. Pediatric adolescents and young adults (AYA), transferred AYA, caregivers, and practitioners participated in semi-structured focus groups and individual interviews examining health equity and systems of power during healthcare transition. Focus groups/interviews were transcribed and coded using a deductive approach via the updated SMART-E framework. Ten pediatric AYA with SCD, nine transferred AYA with SCD, eight caregivers, and nine practitioners participated in a focus group or interview. Qualitative findings across reporters emphasize the impact of systems of power (e.g., racial bias and disease stigma) on knowledge, skills and self-efficacy, beliefs and expectations, goals and motivation, and emotions and psychosocial functioning at the patient, caregiver, and practitioner levels. Systems of power are prevalent with respect to transition barriers for AYA with SCD and their supports. Structural, institutional, and individual factors with potential to reduce the influence of systems of power should be further identified and targeted for intervention.

Behavior and Parenting Stress Characteristics in Young Children With Severe Food Allergies According to the Severity Score System.

Limited knowledge exists regarding the psychosocial characteristics of young Asian children affected by food allergies (FAs) and their caregivers. This study aims to assess the usefulness of the Food Allergy Severity Score (FASS) system in evaluating the risk of emotional impacts on young children and caregivers who are dealing with severe FA. Children between 2 and 10 years of age who were diagnosed with FA and following an elimination diet were enrolled in the study. The FASS, Korean Parenting Stress Index, and Korean Behavior Assessment System for Children-2 were used for evaluating the above mentioned risk. Among the 75 participants, 64.0% had a history of anaphylaxis, and 56.0% reported multiple FAs. A total of 160 cases of FASS was documented across 21 types of food and classified as mild (n = 5, 1.07), moderate (n = 100, 2.01-4.01), or severe (n = 55, 4.24-6.84). The concordance of calculated- and stakeholder interpreted-FASS was moderate (kappa 0.587). Children with severe FASS (sFASS) showed increased risk for functional communication (relative risk [RR], 1.57; 95% confidence interval [CI], 0.99-2.48) and increased parental reinforcement (RR, 1.40; 95% CI, 0.91-2.14). Their caregivers exhibited reduced levels of demandingness (RR, 0.59; 95% CI, 0.37-0.94) and role restriction (RR, 0.62; 95% CI, 0.39-0.98). Receiver operating characteristic curves suggested that functional communication (numeric FASS cutoff, 3.47; area under the curve [AUC], 0.695), withdrawal (cutoff, 3.40; AUC, 0.657), developmental social disorders (cutoff, 3.96; AUC, 0.648), and reinforces parent (cutoff, 3.15; AUC, 0.646) were possibly be affected. The FASS provides an objective tool to assess pediatric FA severity. Early psychosocial intervention for young children with severe FASS and their caregivers may improve prognosis by identifying possible adaptive skill deficiencies and excessive parenting stresses.

Young Adult Patient and Caregiver Perspectives on Transition Readiness in an Inflammatory Bowel Disease Clinic.

When it comes to readiness to transition to an adult subspecialty clinic, perspectives between patients with inflammatory bowel disease (IBD) and their caregivers may differ and influence the ability to successfully transition. Patients with IBD have been shown to suffer from poor transfers of care. There is a need to more efficiently and accurately assess transition readiness to improve the transfer process. Patients transferring to an adult subspecialty clinic and their caregivers were each administered the Transition Readiness Assessment Questionnaire and IBD Self-Efficacy Scale-Adolescent. Differences between patient and caregiver responses and agreement among each dyad were tested. There were 29 dyads of patients and caregivers who enrolled. There was no difference between patient and caregiver total scores. The average level of agreement between patients and caregivers was 78%. There was no association between patient response and their age, gender, ethnicity, age at time of transfer, age at diagnosis, or number of emergency room visits in the prior year. Patient-reported readiness to transition to adult care was confirmed by their caregivers using validated readiness assessment tools. As transition clinics must focus on high-yield interventions, a readiness survey of young adult patients without a survey of their caregivers may be adequate. However, as experts in each patient's journey, caregivers may be utilized when setting goals and priorities for a transition readiness program. The surveys used in this study can be used broadly to aid subspecialty clinics that are trying to improve the transition process.

Effects of the COVID-19 Pandemic on the Lifestyle and Mental Health of Children in the Puducherry District: A Community-Based Cross-Sectional Study.

The COVID-19 pandemic has tremendously disrupted societal behaviors and norms. People had to cope with new situations, including restrictions on free movement, home confinement, and school closures, among others. With less scope for physical classes, online classes became rampantly common during and after the pandemic. A virtual learning platform cannot replace the societal learning and preparation of children that normally occurs in school settings. The pandemic had a multifaceted impact on children, disrupting their routine work, social life, and mental health. Such uncertain circumstances are bound to interfere with their emotional well-being, with long-term consequences. It is imperative to screen for the effects of the pandemic situation among children for timely action. A cross-sectional survey was carried out in both rural and urban areas of Puducherry, India, between February and April 2022, toward the fag end of the pandemic. Face-to-face interviews were conducted among caregivers of 621 children aged 6-17 years. Details such as sociodemographic, personal, and behavioral aspects of the child were collected. Emotional and behavioral difficulties during the pandemic were assessed using the parent (caregiver) version of the Strengths and Difficulties Questionnaire-25 (SDQ-25). Univariate analysis was performed using the chi-square test. Four different regression models were fitted to ascertain the factors influencing the overall difficulty score as well as the SDQ subscales, namely, the internalizing, externalizing, and prosocial scores. A P value of <0.05 was considered significant. Overall, 101 (16.3%) children aged 6-17 years were likely to have emotional and behavioral difficulties according to the SDQ scores. Abnormal externalizing, internalizing, and prosocial scores were documented among 160 (25.8%), 258 (41.5%), and 285 (45.9%) children, respectively. Caregivers reported disruptions in their children's academic performance (426, 68.6%), sleeping patterns (269, 43.3%), and eating habits (256, 41.2%). The use of digital devices for noneducational purposes was reported among 97 (35.9%) children. Younger caregivers (18-45 years), children who used digital devices for >2 hours per day, children who experienced any death due to COVID-19 in their family, and caregivers who perceived that the psychological changes in their children were due to the pandemic were predictors of abnormal SDQ scores. Physical activity for more than two hours per day reduced the risk of emotional and behavioral difficulties in children by 60%. This research underscores the potential ramifications of the pandemic on the mental well-being and lifestyle of children. Implementing initiatives that promote positive mental health and conducting preventive screening for vulnerable populations, such as children, are considered essential, anticipating the challenges posed by such unprecedented pandemic circumstances in the future.

A life of piety: aging and dying in a rural Sinhala Buddhist village

ABSTRACT This paper explores the relationship between aging, care, and death in a rural village in Sri Lanka from an anthropological perspective. It examines how the Buddhist concept of merit acts as a link between these elements. Through a 14-month ethnographic study, I observed how elders, and their younger caregivers engage in a reciprocal exchange of care and merit. Elders in the village engage in various pious activities to accumulate merit, which in turn leads to the care they receive from others as a meritorious deed. The responsibility of caring for the elderly primarily falls on women, who seek to accumulate more merit to alleviate their suffering. Both elders and caregivers believe that accumulating merit reduces suffering, leads to a good death, and ensures a good rebirth. These beliefs are reinforced and evaluated by Buddhist clergy in funeral sermons. This article illustrates how Buddhist ideas of accumulating merit give rise to an emerging ‘economy of merit,’ wherein elders are cared for by their families and communities. This finding has significant implications for understanding and addressing the challenges of an aging population in Sri Lanka.

Navigating Both Roles: A Photovoice Exploration of the Young Adult Balancing Daughterhood and Caregiving for a Mother With Young-Onset Dementia.

Young adults thrust into the role of caregiving for parents with young-onset dementia (YOD) face unique challenges during their formative years. While existing research acknowledges the crucial role of young adult caregivers, a gap persists in understanding how this group experiences and redefines their identity amidst these circumstances, along with the psychological and societal challenges encountered. This knowledge deficit hinders the identification of suitable social support, adversely affecting the personal growth and well-being of these young adult caregivers. In this single-case study, we used a combination of a semi-structured interview and photovoice to explore the journey of a 19-year-old caregiver, Alice, whose mother had been diagnosed with dementia in the preceding 3 years. Through this unique perspective, we aimed to illuminate how caregiving for a mother with YOD may profoundly redefine familial roles and relationships. Over 3 months, Alice captured significant life moments through photography, selecting meaningful images for bi-weekly meetings. These images served as pivotal themes, triggering in-depth conversations during subsequent interviews to provide nuanced insights into her life experiences. Findings reveal four major themes faced by a young caregiver: (1) challenges adapting to an unexpected role, (2) navigating the complex emotional terrain of losing a loved one to YOD, (3) prioritizing the well-being of the healthy parent, and (4) expressing a profound desire for both informal and formal support. These results underscore the intricate identity and emotional challenges faced by young adult caregivers, emphasizing the urgency of addressing their unique needs through family-centered systemic support services.

'You can be as vigilant as you can, yet they make their way in': A descriptive study of parent and caregiver perspectives towards keeping children safe from button batteries.

Button batteries pose a significant threat to young children, and parents and caregivers play an important role in keeping children safe from button batteries, especially in the home environment. However, little is known regarding parent or caregiver perspectives on button battery safety, in particular, the threat they pose to children. The aim of this study was to examine perspectives on button battery safety to enable tailored prevention strategies and to examine parent and caregiver perspectives on button battery safety in the home. One hundred and seventy-four parents and caregivers of children aged 0-5 completed a cross-sectional online survey. Distribution occurred via social media. The survey contained multiple-choice questions pertaining to button battery knowledge and attitudes. Most respondents recognised the dangers of button battery ingestion, yet only 37% knew of button battery ingestion symptoms. While 68% knew of household items containing button batteries, 21% were aware of product-recall information sources. Approximately 64% understood immediate post-ingestion steps, but only 31% were familiar with first-aid procedures. From an attitudinal standpoint, 95% understood the importance of child supervision around button batteries, 78% prioritised battery safety in toy purchases, and 17% found current safety labels unsatisfactory. This study provides a foundation for ongoing investigation of parent and caregiver perspectives on button battery home safety. Ongoing, comprehensive education and public-safety campaigns are needed to rectify gaps in knowledge regarding button battery safety, and to reduce the risk of button battery ingestion in children.