Caregivers Of Individuals Research Articles

Initial examination of virtual support groups as a resource for caregivers of individuals with eating disorders

ABSTRACT Eating disorder (ED) caregivers endorse substantial caregiver strain and psychological distress, and without adequate support may struggle to help their loves ones in adaptive ways. Caregiver interventions can be time-intensive and costly, potentially compounding strain, and thus there is need to examine alternative resources such as support groups. Data from 181 participants who attended virtual, clinician-moderated ED caregiver support groups were used to examine associations between past-month group attendance and participation frequency, psychological distress, caregiver strain, and caregiving skill. Adjusting for duration of support group attendance, Pearson partial correlations indicated that attendance frequency was positively related to several aspects of adaptive caregiving while verbal and chat participation frequency were positively related to within-group emotional support, social companionship (i.e. social cohesion), and informational support. Findings suggest that ED caregiver support groups have potential to support caregiver efficacy and provide access to social support, which could mitigate caregiver strain and thus also improve the wellbeing of people with EDs. However, results are preliminary and not an indication that ED caregiver support groups produce changes in wellbeing. Rather, results provide important foundational information that should be used to inform prospective examination of caregiver distress and skill outcomes with support group utilization.

Psychometric Properties of the Spanish Version of the Caregiver Contribution to Self-Care of Diabetes Inventory (CC-SCODI)

Background: The Caregiver Contribution to Self-Care of Diabetes Inventory (CC-SCODI) is an instrument grounded in the middle-range theory of self-care of chronic illness. It is designed to measure how caregivers support individuals with diabetes mellitus in carrying out self-care activities. Effective tools are essential for clinicians and researchers to evaluate factors influencing self-care, including caregivers’ contributions. This study aimed to assess the reliability and validity of the Spanish translation of the CC-SCODI. Methods: A total of 201 caregivers of individuals with Type 1 Diabetes Mellitus (T1DM) and Type 2 Diabetes Mellitus (T2DM) were recruited for participation in this cross-sectional study. Participants were selected through convenience sampling at a university hospital. Before administration, the survey questions were translated and culturally adapted to ensure appropriateness for both patients and caregivers. Confirmatory factor analysis (CFA) was performed on each of the CC-SCODI subscales using models fitted to the relevant indices. Results: The initial construction of the four-dimensional tool was verified. The internal consistency of the four subscales was assessed using Cronbach’s α to measure the caregiver contribution to patients’ self-care maintenance (α = 0.725), self-care monitoring (α = 0.728), self-care management (α = 0.729), and caregiver self-efficacy in contributing to patient self-care (α = 0.921). Model fit indices demonstrated a chi-square value of 1.028 with 773 degrees of freedom. CFA indicated an excellent model fit, confirming the reliability and validity of the proposed structure. Conclusions: The internal consistency and reliability of the Spanish version of the CC-SCODI were deemed adequate. Due to its strong psychometric properties, this instrument is considered appropriate for evaluating the contribution of caregivers to the self-care behaviors of Spanish-speaking individuals with diabetes.

THE AUDITORY PROCESSING DOMAINS QUESTIONNAIRE AND THE AUDITORY BEHAVIOR SCALE IN INDIVIDUALS WITH AUTISM SPECTRUM DISORDER

Objective: To analyze everyday auditory skills perceived by parents or caregivers of individuals with Autism Spectrum Disorder (ASD) Level 1 and neurotypical individuals, using the Auditory Behavior Scale (SAB) and the Auditory Processing Domains Questionnaire (APDQ). Methodology: An analytical cross-sectional study conducted at EPM-UNIFESP. A total of 93 individuals (aged 7 to 17 years) participated, divided into the ASD Group (ASDG) and the Neurotypical Group (NG). The SAB and APDQ questionnaires were applied to the caregivers, and central auditory processing (CAP) assessments were performed. Results: The analysis of the SAB scores between the groups revealed a median of 53 points for the NG and 32 points for the ASDG, with a significant difference (p<0.001) and a medium effect size (r=0.74), indicating a considerable difference in auditory behavior between the groups. The APDQ instrument revealed statistically significant differences between the attention (r=0.68), language (r=0.71), central auditory processing (r=0.73), and total score (r=0.73) domains between the groups, with p<0.001. The NG obtained higher mean and median scores on all items compared to the ASDG, with effect sizes considered medium. In the central auditory processing domain, the NG had nearly double the median score compared to the ASDG. Conclusion: The APDQ and SAB questionnaires were effective in the early identification of auditory, attention, and language difficulties, making them valuable tools in clinical and educational contexts. The combined use of the APDQ and SAB can assist in screening for CAP disorders, facilitating appropriate clinical referrals for children and adolescents with ASD Level 1.

Social media-based bibliotherapy for improving the mental health of informal caregivers of people with dementia: a randomized controlled trial

BackgroundDespite their own experience of mental health issues, informal caregivers of individuals with dementia are often overlooked, and there is a limited availability of community services tailored specifically for them. A self-help intervention, bibliotherapy, shows promise as an intervention to enhance the mental well-being of caregivers in resource-constrained settings, and social media has demonstrated its efficacy as a user-friendly platform for delivering health interventions. However, the efficacy of social media-based bibliotherapy remains untested.AimThis study aims to test the efficacy of social media-based bibliotherapy on improving the mental health of informal caregivers of people with dementia through a randomized controlled trial.MethodsA total of 60 informal caregivers were enrolled in this randomized controlled trial. Participants were randomly assigned to either the social media-based bibliotherapy group, which received eight weekly sessions of bibliotherapy, or the usual care group, which only received routine services from community centers. Outcomes were assessed at baseline and immediately after the intervention. Post-intervention interviews were conducted to explore participants’ experiences with this intervention. Descriptive statistics, t-tests, Mann-Whitney U tests, χ2 tests, and generalized estimating equations were used for quantitative data analysis. Content analysis was employed for qualitative data analysis.ResultsThe average age of caregivers was 57.41 (SD, 13.63), with a majority being female (79.3%). Baseline characteristics were similar between groups. Both quantitative and qualitative data demonstrated that social media-based bibliotherapy was acceptable for informal caregivers, with WhatsApp being the preferred medium in this study. The recruitment rate, retention rate, and completion rate of weekly tasks all met satisfactory levels. Caregivers found the intervention useful and flexible while experiencing changes in their perceptions towards caregiving responsibilities. The efficacy on mental health (Wald χ2 = 8.918, p =.003) and all the subscales of stress (Wald χ2 = 4.198, p =.040), anxiety (Wald χ2 = 7.667, p =.006), depression (Wald χ2 = 9.127, p =.003) was statistically significant. The efficacy on caregiving appraisal was only significant on the perceived caregiving burden subscale (Wald χ2 = 4.954, p =.026). However, caregivers expressed changes in caregiving appraisal in qualitative interviews. The efficacy on the mental component scale of health-related quality of life approached significance (Wald χ2 = 3.634, p =.057). However, the efficacy on the positive psychological well-being remains insignificant.ConclusionsTo the best of our knowledge, this is the first attempt to use social media-based bibliotherapy among informal caregivers of individuals with dementia. The utilization of WhatsApp was well received among caregivers, and the positive effects on their mental health was demonstrated.Trial registrationThe trial has been registered on ClinicalTrial.gov (Ref: NCT06327022).

Challenges Facing Caregivers of Individuals Diagnosed With Frontotemporal Dementia in the United States (P11-3.009)

Challenges Facing Caregivers of Individuals Diagnosed With Frontotemporal Dementia in the United States (P11-3.009)

Assessing Family Caregivers' Needs for a Digital Intervention to Support Families Affected by Schizophrenia.

Family caregivers of individuals with schizophrenia face significant physical, emotional, and financial challenges, often sacrificing self-care and careers, particularly in low-middle-income families. Despite the benefits of family interventions, barriers like stigma and limited access persist. Mobile health (mHealth) offers a promising alternative by providing tailored psychosocial support, though long-term engagement is challenging. This study aims to understand caregiver's needs to develop a user-centered digital intervention. Participatory workshops with caregivers, individuals with schizophrenia, and healthcare professionals revealed key issues, including the need for evidence-based education and emotional support. Caregivers reported confusion, loneliness, and stress, especially in the initial stages. The proposed digital solution, which integrates educational content and self-care activities, was well-received. Participants valued educational units on understanding schizophrenia and improving communication with the person receiving care and healthcare providers. They suggested including education on legal aspects and economic aid for families, along with connections to local activities and support groups.

Stress-Monitoring Device Identifies Psychological Stress Reduction Through Psychoeducation in Informal Caregivers of Schizophrenia Patients.

Schizophrenia is a chronic mental health disorder with cognitive, emotional, and behavioral functions. The burden of caregiving for individuals with schizophrenia primarily falls on informal caregivers, who often experience high levels of psychological stress. Effectively managing this stress is crucial, as caregiver well-being can directly influence treatment adherence and patient outcomes. Psychoeducation has been identified as a valuable intervention, equipping caregivers with knowledge about schizophrenia and strategies for stress reduction. However, its effects on physiological indicators of stress have not been well-documented. This quasi-experimental study aimed to evaluate the impact of a psychoeducation program on the psychological stress of caregivers of schizophrenia patients, as measured by a stress index. Twenty-six caregivers participated in the study, with stress levels assessed at baseline and 12 weeks using uBioMacpa software. Psychoeducation was provided as a one-day group session, followed by weekly phone support. Results showed that, unlike the control group, the intervention group exhibited a statistically significant reduction in stress index after 12 weeks (48.7±13.1 vs. 41.4±11.3, P = 0.02). These findings suggest that psychoeducation may offer a practical approach to reducing psychological stress among caregivers, improving their well-being, and potentially supporting better patient outcomes. Further research should examine additional benefits, such as enhanced coping skills, quality of life improvements, and long-term effects on psychological health.

Occupational balance and caregiver burden among caregivers of individuals with spinal cord injuries

Objectives To investigate the occupational balance, caregiver burden, and factors affecting them in caregivers of individuals with spinal cord injuries in Iran. Design A cross-sectional study with multiple linear regression analyses to specify factors related to occupational balance and caregiver burden. Settings Community-dwelling individuals with spinal cord injury (SCI). Participants A convenience sample of 84 individuals with SCI. Interventions Not applicable. Measures The Occupational Balance Questionnaire-11, Caregiver Burden Scale (CBS), and Hospital Anxiety and Depression Scale (HADS) were used to assess the occupational balance, caregiver burden, and stress/anxiety levels of the caregivers, respectively. Functional independence, anxiety/depression levels, and the participants’ ability for self-management were evaluated using the Barthel index, HADS, Partners In Health (PIH), and Patient Activation Measure (PAM), respectively. Results There was a positive and significant correlation between the self-management skills of the participants and their independence in daily activities with their caregivers’ occupational balance. A negative and significant correlation was found between the individuals’ self-management skills and their independence in daily activities with caregiver burden. In addition, a significant correlation existed between the anxiety and depression of the participants and their caregivers with occupational balance and caregiver burden. Finally, there was a negative and significant correlation between occupational balance and caregiver burden (P ≤ 0.05). Conclusion This study demonstrated that factors such as participants’ self-management skills, their independence in daily activities, and the level of anxiety and depression in participants and caregivers affect the occupational balance and burden experienced by caregivers of individuals with SCIs.

Prevalence and sociodemographic configurations of anxiety and depression among caregivers of individuals with mental illness: A meta-analysis and qualitative comparative analysis.

Prevalence and sociodemographic configurations of anxiety and depression among caregivers of individuals with mental illness: A meta-analysis and qualitative comparative analysis.

Mapping global evidence of caregiver experiences in bipolar disorder in low and middle-income countries: A scoping review.

Mapping global evidence of caregiver experiences in bipolar disorder in low and middle-income countries: A scoping review.

Videoconference-Delivered Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Pilot Randomized Controlled Trial.

Family caregivers of individuals with dementia face significant mental health challenges. Acceptance and commitment therapy (ACT) has emerged as a promising intervention for improving these caregivers' mental health. While various delivery modes of ACT have been explored, there is a need for evidence on the efficacy of videoconference-delivered ACT programs for this population. This pilot randomized controlled trial, conducted in the United States, aims to assess the effects of a videoconference-delivered, therapist-guided ACT program on reducing depressive symptoms and improving other mental health outcomes among family caregivers with depression who give care to individuals with dementia, compared to a control group that received psychoeducation materials only. This 2-arm, parallel-group pilot randomized controlled trial randomly assigned 33 family caregivers to either a 10-week videoconference-delivered ACT program (n=16, 48%) or a control group that received psychoeducation materials alone (n=17, 52%). Depressive symptoms (primary outcome) were measured using the Patient Health Questionnaire-9. Secondary outcomes included anxiety, stress, psychological quality of life (QoL), caregiver burden, predeath grief, guilt, and ACT process measures. Outcomes were assessed in the pretest, posttest (10-12 weeks after pretest), and a 3-month follow-up (3 months after posttest, approximately 5-6 months after pretest). An intent-to-treat approach was used for all outcome analyses. Linear mixed-effects models for repeated measures were used to analyze outcomes. The ACT group reported significantly greater improvements in stress (P=.043) and psychological QoL (P=.014) in the posttest compared to the control group. Within the ACT group, participants experienced a significant decrease in depressive symptoms, with a mean (SE) change of -6.09 (1.16) points (95% CI -8.42 to -3.76; P<.001) in the posttest and -6.71 (1.45) points (95% CI -9.63 to -3.81; P<.001) in the 3-month follow-up. These changes exceed the estimated minimal clinically important difference on the Patient Health Questionnaire-9. In addition, the ACT group reported significant improvements in anxiety, stress, psychological QoL, caregiver burden, predeath grief, guilt, values-driven action, and experiential avoidance at both posttest and 3-month follow-up. A sensitivity analysis, excluding 1 participant with near-outlier data, revealed statistically significant between-group differences in depressive symptoms at posttest (P=.037); stress at posttest (P<.001) and in 3-month follow-up (P=.001); psychological QoL at posttest (P<.001); caregiver burden at posttest (P=.003) and in 3-month follow-up (P=.003); predeath grief in 3-month follow-up (P=.031); and values-driven action at posttest (P=.032). The videoconference-delivered ACT program showed promise in improving mental health outcomes and ACT processes among family caregivers with depression who give care to individuals with dementia. Future studies should aim to replicate these findings with larger, more diverse caregiver populations and explore the long-term efficacy of videoconference-delivered ACT programs. ClinicalTrials.gov NCT05043441; https://clinicaltrials.gov/study/NCT05043441.

Caregiver Burden in Parents Providing Care for Children with Serious Mental Illness: A Systematic Review and Meta-Analysis

Aim: The main purpose of this investigation is to explore and identify the factors that contribute the most to the exacerbation of caregiver burden for informal caregivers of individuals with serious mental illnesses (SMIs). Procedure: Literature searches comprised 18 combinations of search terms related to caregiver burden and serious mental illness. Across eight databases, 1532 articles were identified. After removing 596 duplicates, 936 articles were screened for inclusion criteria, resulting in three studies that met the criteria. This small number of articles included were due to the specificity of our inclusion criteria. From these articles, correlations between caregiver burden and any other variable were extracted. Meta-analysis was conducted using a three-level meta-analytic model. Results: A total of five factors were identified across the included articles: parent age, parent education, parent health, social support, and care recipient characteristics. The three-level meta-analytic model identified the factors parent health, (z = .314, CI [.138, .490], se = .074, t(7) = 4.222, p = .004), and social support (z = -.155 CI [-.282, -.027], se = .056, t(9) = -2.750, p = .022), to have significant overall effect sizes. The remaining factors did not yield significant overall effect sizes. Conclusions: This review reveals that there is still limited research on caregiver burden for caregivers providing support to individuals with SMIs, to the level of specificity that accounts for the different relationships in caregiver-care recipient dyads. However, from the data available, variables that had the largest impact on caregiver burden measures were parental health and social support. These aspects may be possible targets for informal caregiver support. KEYWORDS: Caregiver Burden; Caregiver Burnout; Serious Mental Illness; Informal Caregiver; Parental Caregiver; Risk Factors; Systematic Review; Meta-Analysis

Psychological Distress among Caregivers of Individuals with Alzheimer in Pakistan: A Quantitative Study

The objective of the study is to examine the association between psychological distress—operationalized as depression, anxiety, and stress—among caregivers in Pakistan of individuals with Alzheimer. Using a cross-sectional correlational design and purposive sampling, data were Collected from 250 caregivers. The results revealed a significant positive association between stress, anxiety, and depression. Hayes' Macro Process 4.1, Model 4, demonstrated that anxiety significantly and positively mediates the association between stress and depression. The findings were discussed in relation to existing literature and practical recommendations were provided to enhance caregiver well-being. These include offering counselling services, raising awareness about Alzheimer’s disease, encouraging peer support networks, promoting access to professional mental health care, providing guidance on effective caregiving strategies, and emphasizing the importance of establishing government-run programs and support groups for Alzheimer’s caregivers.

Individuals with Special Needs and Biological Disasters: Experiences of COVID-19

Natural disasters and pandemics are defined as events that affect all segments of society but make conditions more difficult for individuals with special needs and their caregivers. In disaster situations, meeting the needs of individuals with special needs and ensuring their safety requires the planning of individualized services. In this context, various physical, emotional, and social problems may arise for caregivers and individuals with special needs. Global events such as the pandemic can profoundly affect the lives of individuals with special needs and their caregivers, making the problems and needs they face more visible. The research, designed as a phenomenological design, consists of twelve mothers who are caregivers of individuals with special needs. Researcher diary, document analysis, and semi-structured interviews were used as data collection techniques. The data were analyzed through content analysis. Research findings were presented descriptively and supported by direct quotations. The research findings showed that the participants discussed their opinions under the headings of experiences, problems, support received, insights, and needs regarding the pandemic process. Participants described the pandemic process as frightening, disrupting their routines and making their difficult conditions even more difficult; they reported that they had problems spending time at home and coping with problematic behaviors. Their views on their experiences during the pandemic process were categorized as the experiences of the first encounter, the lessons they learned, the adaptation strategies they developed for the process, and the meaning of education during the pandemic. In addition, the caregivers received support in various fields from their close family members, neighbors, and teachers in this process. It was also found that they had needs in areas such as care, information, material, social interaction, and psychological support. Based on the results, recommendations for future research and applications have been presented.

The caregiver burden of idiopathic inflammatory myopathies.

The purpose of this cross-sectional study was to determine the prevalence of caregiver burden (CB) in caregivers of patients with idiopathic inflammatory myopathies (IIM). An anonymous survey was distributed worldwide to caregivers of myositis patients through Myositis Support and Understanding in May 2022. CB was measured using the Zarit Burden Interview. The survey also gathered caregiver demographic, financial, and insurance information as well as patient demographic and disease information. Overall, 75.8% of caregivers had at least mild to moderate CB. 39.2% reported not being affected financially by their caregiving responsibilities. A positive effect was found between CB and time since diagnosis, disability level, and financial hardship. A negative effect was found with CB and caregiver age. No association was found between IIM type and CB. CB is a common experience among caregivers of all types of IIM patients. Future research can use our results to generate viable hypothesis about CB in myositis. They should also seek to further understand what contributed to CB in this population. Clinicians should also be attuned to the needs of caregivers tending to long-term myositis patients, especially caregivers of more disabled patients, older caregivers, and individuals financially challenged by caregiving.

Patient relevant outcomes for type 1 diabetes management: A qualitative evidence synthesis.

Identify and define relevant outcomes for people living with T1DM and their caregivers, and explore the differences across contexts and life stages. This exercise will inform the development of a Core Outcome Set (COS), an essential list of outcomes that should be measured for T1DM. A systematic review of qualitative studies published between 2010 and 2024 using PubMed (Medline), EMBASE, PsychINFO, and CINHAL was conducted. Studies that explored the perspectives and opinions of people living with T1DM or their caregivers around care and the healthcare system were included. Qualitative evidence synthesis was used to identify relevant outcomes for people living with T1DM and their caregivers. People living with T1DM and patient representatives were consulted to provide feedback on the results. 119 studies were included; 85/119 (71.4%) conducted in high-income countries. Through the qualitative evidence synthesis, we found three levels of outcomes: (1) individual level (diabetes burden, psychological distress, self-efficacy, hypoglycemia burden, and diabetes burnout), (2) caregivers and family level (caregiver burden, social support, support provided by diabetes management team, and financial impact), and (3) systemic level (access to healthcare, administrative burden, structural support). We found that outcomes can be categorized into three different levels (individual, caregivers/family, and systemic). COS usually considers individual level outcomes, but it was found that outcomes beyond the individual, such as those at the caregiver/family and healthcare levels, also matter for people living with T1DM. To meet the needs, all these levels should be measured.

Oral Hygiene Care for Patients with Disabilities: A Survey of Caregivers’ Awareness and Practices in Jeddah, Saudi Arabia

Background Obtaining oral health care can be challenging for individuals with disabilities, who often depend on caregivers for assistance with preventive dental practices. This study assessed caregivers' knowledge, awareness, and practices related to oral hygiene for individuals with special needs in Jeddah, Saudi Arabia. Methods A cross-sectional survey was conducted with 147 caregivers of individuals with intellectual, motor, psychological, medical, and sensory disabilities. Data were collected using a structured questionnaire that addressed dental visit frequency, oral hygiene practices, and the use of oral hygiene products. Descriptive statistical methods were used for analysis. Results Although 74.1% of caregivers recognized the relation between oral and general health, gaps in oral hygiene practices were evident. Only 4.1% used dental floss, and 54.4% reported irregular brushing. Moreover, 69.4% of caregivers visited the dentist only when necessary. Common dental problems included dental caries (45%) and gingival bleeding (66.7%). Additionally, 13.6% of caregivers reported that a dentist refused treatment, while 91.2% of them expressed interest in receiving free dental exams. Conclusion The study highlights the necessity for specialized educational programs to enhance caregivers' knowledge and practices regarding oral hygiene for individuals with special needs. Addressing these gaps and promoting preventive oral care could improve dental health outcomes for this vulnerable population.

Caregiver burden and familial impact in Down Syndrome Regression Disorder

BackgroundDown Syndrome Regression Disorder (DSRD) is an acute or subacute neurocognitive regression in individuals with Down syndrome (DS), characterized by a loss of previously acquired cognitive, adaptive, and social skills. DSRD profoundly affects individuals’ ability to engage in activities of daily living, making them highly dependent on their caregivers who must provide significantly more support than before the DSRD diagnosis. This study aimed to examine caregiver burden, quality of life, and depression among caregivers of individuals with DSRD versus caregivers of those with DS and other neurological disorders (DSN).Design/MethodsIn this cross-sectional study, caregivers of individuals with DSRD (n = 228) and DSN (n = 137) were recruited through Children’s Hospital Los Angeles neurology clinic and a Facebook DSRD support group. Participants completed standardized questionnaires assessing quality of life (PedsQL Family Impact Module), caregiver burden (Zarit Caregiver Burden Assessment, ZCB), and depression (Glasgow Depression Scale, GDS), along with additional items addressing other factors of caregiver well-being. Data were analyzed using bivariate comparisons and univariate regression models to assess differences between groups.ResultsCaregivers of individuals with DSRD were more likely than caregivers of those with DSN to report increased financial burden (p = 0.003), housing changes (p = 0.02), disrupted sleep (p < 0.001), negative impacts on social networks (p < 0.001), and worsened mental health (p < 0.001). Furthermore, DSRD caregivers reported significantly higher levels of burden (mean difference [95% CI]: 8.3 [6.3, 9.7]) and depression symptoms (2 [0.7, 3.4]), reflecting greater perceived stress and burden. They also had lower quality of life scores (-27.9 [-30.2, -25.5]), indicating a more substantial impact on overall well-being and daily functioning compared to DSN caregivers. Additionally, caregivers in the DSRD group had higher odds (odds ratio [95% CI]: 4.7 [2.9, 7.7)] of meeting clinical depression criteria (GDS score ≥ 13) than caregivers in the DSN group.ConclusionsCaregivers of individuals with DSRD experience significantly greater distress and burden compared to those caring for individuals with DSN. The elevated risk of depression, combined with reduced quality of life and increased burden, underscores the multimodal nature of the challenges faced by this population.

The Unseen Burden: A Qualitative Investigation of Polish LGBTQ+ Caregivers' Experiences.

Background/Objectives: As the world's population ages, the growing number of individuals affected by Alzheimer's disease and related dementias (ADRDs) will undoubtedly continue to impose social and economic challenges. Informal caregivers play a crucial role in providing essential support for individuals with ADRD. However, there is limited research that investigates the psychosocial functioning of caregivers (partners) from minoritized groups. Methods: This study aimed to explore the experiences of lesbian, gay, bisexual, transgender and queer (LGBTQ+) caregivers of individuals with ADRDs. Semi-structured in-depth interviews were conducted with seven caregivers of partners diagnosed with ADRDs. Three themes were identified based on reflexive thematic analysis: (i) experiencing familial alienation; (ii) fear about the future; and (iii) finding strength in the face of adversity. Results: The research highlighted difficulties reported by LGBTQ+ caregivers, while also showing how such caregivers cope. The findings provide a basis for developing targeted interventions for caregivers from minoritized groups. Conclusions: These findings have important implications for policy and intervention development concerning LGBTQ+ caregivers' mental and physical health outcomes.

The Potential of ChatGPT as a Source of Information for Kidney Transplant Recipients and Their Caregivers.

Education and enhancing the knowledge of adolescents who will undergo kidney transplantation are among the primary objectives of their care. While there are specific interventions in place to achieve this, they require extensive resources. The rise of large language models like ChatGPT-3.5 offers potential assistance for providing information to patients. This study aimed to evaluate the accuracy, relevance, and safety of ChatGPT-3.5's responses to patient-centered questions about pediatric kidney transplantation. The objective was to assess whether ChatGPT-3.5 could be a supplementary educational tool for adolescents and their caregivers in a complex medical context. A total of 37 questions about kidney transplantation were presented to ChatGPT-3.5, which was prompted to respond as a health professional would to a layperson. Five pediatric nephrologists independently evaluated the outputs for accuracy, relevance, comprehensiveness, understandability, readability, and safety. The mean accuracy, relevancy, and comprehensiveness scores for all outputs were 4.51, 4.56, and 4.55, respectively. Out of 37 outputs, four were rated as completely accurate, and seven were completely relevant and comprehensive. Only one output had an accuracy, relevancy, and comprehensiveness score below 4. Twelve outputs were considered potentially risky, but only three had a risk grade of moderate or higher. Outputs that were considered risky had an accuracy and relevancy below the average. Our findings suggest that ChatGPT could be a useful tool for adolescents or caregivers of individuals waiting for kidney transplantation. However, the presence of potentially risky outputs underscores the necessity for human oversight and validation.