Caregiving Decisions Research Articles

Factors Associated with Caregivers' Decisions to Pursue a Diagnostic Evaluation After a Positive Autism Screen in Primary Care.

We sought to understand whether a child's sex, age, race, ethnicity, caregiver education, family income, and/or number of endorsed autism signs are associated with a caregiver's decision to pursue an autism diagnostic evaluation after their child received a positive autism screen. 129 children, 17-30 months, received a positive autism screen on the Modified Checklist for Autism in Toddlers-Revised with Follow-Up, and all caregivers were offered ready access to a diagnostic evaluation by a trained professional in English or Spanish at no cost. 88 children received an evaluation and 41 did not. The likelihood of receiving an evaluation was associated with the child's race. Only 58.1% of Black children were evaluated, compared to 80% of Hispanic/Latino and 88.5% of White children. Children of Spanish-speaking caregivers showed high rates of evaluation completion (85.7%). Children who were evaluated versus were not evaluated did not significantly differ in terms of child's sex, number of autism signs endorsed by the caregiver, caregiver's education and preferred language (English versus Spanish), or household income. Even though the present study removed many common barriers to receiving a timely diagnostic evaluation, caregivers of Black children were less likely to pursue an autism diagnostic evaluation for their child. Future research is needed to understand the needs and perspectives of Black families to promote engagement in clinical care and reduce disparities in receiving a timely autism diagnosis which is important for accessing supports and services that can improve children's outcomes.

Experiences and barriers in downward referral decision-making for palliative care patient caregivers under China's three-tiered linkage model: A qualitative study

ObjectiveThis study aimed to explore hospice caregivers’ downward referral decision-making experiences and barriers under the triadic linkage model in China and to analyze the deeper social dynamics of hospice referral choices. MethodsSemi-structured interviews were conducted with caregivers handling hospice referrals from two primary hospice agencies in Nanjing, China. The themes were analyzed and summarized using the Colaizzi 7-step analysis. ResultsFour themes and nine subthemes were extracted: multidimensional caregiver psychological experience (Dilemma and Guilt, Emotional Support and Psychological Adaptation), perceived disparities between referral organizations (convenience and affordability in the home community, perceived lack of primary health care resources), limitations of caregiver decision-making (cognitive comprehension bias, difficulty in information seeking, and passive acceptance of decision making), and limitations of health care referral support (lack of health care referral guidance, inadequate referral handoffs). ConclusionsFeedback from caregivers of hospice-referred patients reveals many barriers to hospice referral decision making and referral implementation. Overcoming these barriers entails efforts to change the cognitive misunderstandings regarding hospice referrals from patients' perspective, clarify the distribution of responsibilities among hospice agencies, and provide information support and decision-making assistance. These measures must be employed to improve the implementation of hospice referral, realize the multiple benefits of hierarchical diagnosis and treatment, boost patients’ satisfaction with the referrals, and ensure the rational and efficient distribution of hospice resources.

Mental health stigma and service use among Black American youth: A systematic review.

Past research has found that Black children do not obtain mental health services at a rate commensurate with their needs. Additionally, they overall have lower rates of service utilization in comparison to other groups, even when factors such as socioeconomic status are considered. This systematic review aimed to examine the impact of mental health stigma on service utilization within Black families. We conducted a review of qualitative and quantitative studies published from 1990 to 2020 that examined the relationship between mental health stigma and service use and included disaggregated data of Black American youth and/or caregivers as the participants. Twelve articles (six quantitative, four qualitative, and two mixed methods) met the inclusion criteria. We used a narrative synthesis approach to organize and assess the extracted data. Youth reported stigmatizing beliefs about mental health treatment, although their attitudes did not contribute to caregivers' decisions about seeking treatment for them. Caregivers reported an awareness of stigmatizing views being held by others in their communities, but they did not consistently describe these views as impacting their service use decisions. Findings suggest a need for additional research to determine which factors most strongly impact the service use decisions of Black American caregivers. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

"Things That You Thought Mattered, None of That Matters": A Qualitative Exploration of Family Caregiver Values following Left Ventricular Assist Device Implantation.

Intentional exploration, or elicitation, of patient and family values-who/what matters most-is critical to the delivery of person-centered care, yet the values elicitation experiences of family caregivers have been understudied. Understanding caregiver experiences discussing, reflecting upon, and acting on their values is critical to optimizing health decisions after left ventricular assist device (LVAD) implantation. The aim of this study was to explore the values elicitation experiences of family caregivers of individuals with an LVAD in the postimplantation period. This was a qualitative descriptive study of LVAD caregivers recruited from an outpatient clinic in the southeast United States. After completing one-on-one semistructured interviews, participants' transcripts were analyzed using thematic analysis. Interviewed caregivers (n = 21) were 27 to 76 years old, with 67% African American, 76% female, 76% urban-dwelling, and 62% a spouse/partner. LVAD implantation was an impactful experience prompting caregiver reevaluation of their values; these values became instrumental to navigating decisions and managing stressors from their caregiving role. Three broad themes of caregiver values elicitation experiences emerged: (1) caregivers leverage their values for strength and guidance in navigating their caregiving role, (2) LVAD implantation prompts (re)evaluation of relationships and priorities, and (3) caregivers convey their goals and priorities when deemed relevant to patient care. Having a care recipient undergo LVAD implantation prompted caregivers to reevaluate their values, which were used to navigate caregiving decisions and stressors. Findings highlight the need for healthcare professionals to engage and support caregivers after LVAD implantation.

Factors Associated with Caregiver Decision Not to Transport Pediatric Patients Assessed by Emergency Medical Services

Objectives: Almost one third of pediatric 9-1-1 calls result in non-transport by Emergency Medical Services (EMS). It is unknown to what extent these decisions are driven by caregivers’ decisions to decline transport versus EMS advice that transport is unnecessary. Further, it is unknown whether demographic, encounter, or agency factors are associated with caregivers declining transport.
 Methods: We conducted a retrospective cross-sectional study with data from the national 2019 ESO Data Collaborative (a convenience sample with data from > 2,000 EMS agencies). We included 9-1-1 responses for children <18 years. The primary outcome was caregiver decision not to transport patient (per EMS documentation) compared to EMS-initiated non-transport. Descriptive data for patient dispositions were generated. Bivariable and multivariable logistic regression identified factors associated with caregiver decision not to transport.
 Results: Of 313,903 pediatric 9-1-1 activations, 37.2% resulted in non-transport, with 80.0% of pediatric non-transports attributable to a caregiver decision. The patient and encounter characteristics for children not transported by EMS were similar, regardless of whether the caregiver or EMS clinician made the decision not to transport. There was wide inter-agency variation in both the rate of non-transport (median 0.37, interquartile range (IQR 0.25 – 0.48)) and the proportion of these encounters attributable to a caregiver decision (median 0.82, IQR 0.68-0.94).
 Conclusions: In this large national dataset, pediatric non-transport by EMS was common, and in most cases non-transport was documented to result from a caregiver decision. Both the rates of non-transport and proportion of caregiver decision varied significantly between EMS agencies. Further research is needed to understand pediatric patient outcomes after non-transport and to identify the reasons for practice variability between EMS agencies. Developing standardized, evidence-based non-transport protocols for children may help reduce this potentially unwarranted clinical variation.

Low-Acuity Pediatric Emergency Department Utilization: Caregiver Motivations.

Proper emergency department (ED) utilization is a hallmark of population health. Emergency department overcrowding due to nonurgent visits causes increased stress to healthcare staff, higher costs, and longer wait times for more urgent cases. This study sought to better understand post pandemic reasons caregivers have when bringing in their children for nonurgent visits and devise effective interventions to improve caregiver choice for non-ED care for nonurgent conditions. Surveys were conducted at an urban pediatric hospital for Emergency Severity Index (ESI) level 3 to 5 visits. A total of 602 surveys were completed with 8 being excluded from analysis. Survey responses and anonymized demographic information were collected. Responses were compared between surveys grouped by respondent age category, relation to child, child's race, insurance type, and ESI levels. Primary reasons given for nonurgent ED visits were perceived urgency (74.2%, n = 441), ED superiority to other locations (23.9%, n = 142), and referral to the ED by a third party (17.7%, n = 105). Of those who cited perceived urgency as a reason, 80.5% (n = 355) wanted to lessen their child's pain/discomfort as soon as possible, but only 13.6% said that their child was too ill to be seen anywhere else (n = 60). Demographic differences occurred in the proportions of respondents citing some of the primary and secondary reasons for bringing their child to the ED. This study highlights 3 key findings. An immediate desire for care plays a key role in caregiver decision making for low-acuity visits. There is potential socioeconomic and racial bias in where care is recommended that needs to be further explored in this region. Cross community interventions that target key reasons for seeking low-acuity care have the highest likelihood of impacting the use of the ED for low-acuity conditions.

Construction of the Views oN Infant Sleep (VNIS) Questionnaire

Parents' beliefs about infant sleep behaviour vary over time and across cultures. No validated instrument exists to understand parents' pre- and postnatal views on infant sleep behaviours, which may influence their caregiving decisions. The Views oN Infant Sleep Questionnaire (VNIS) will be a tool to assess parents' beliefs in order to facilitate tailored perinatal care, increase the reliability of postnatal self-report measures, allow for cross-cultural comparisons, and provide a baseline for researchers to use in longitudinal studies. We recruited an online sample of 971 female participants who were resident in the United Kingdom, at least 28 weeks pregnant, and at least 18 years of age. The initial questionnaire consisted of 31 questions about infant independence, night-waking, infant feeding, touch, and safety, and items were rated on a 5-point Likert scale. The item pool was reduced to 12 using principal component analysis and a structure was found for the three components “Closeness”, “Independence”, and “Night-waking”. Overall, these results suggest that the VNIS can provide a brief scale to measure different aspects of individuals' beliefs about infant sleep. In further research the VNIS needs to be validated with a confirmatory factor analysis in another sample, and to be tested as a cross-cultural instrument.

A scoping review of decision-making tools to support substitute decision-makers for adults with impaired capacity.

Substitute decision-makers (SDMs) make decisions that honor medical, personal, and end-of-life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem-solving tools required to make decisions and can suffer with negative emotional, relationship, and financial impacts. The need for adaptable supports has been identified in prior meta-analyses. This scoping review identifies evidence-based decision-making resources/tools for SDMs, outlines domains of support, and determines resource/tool effectiveness and/or efficacy. The scoping review used the search strategy: Population-SDMs for older adults who have lost decision-making capacity; Concept-supports, resources, tools, and interventions; Context-any context where a decision is made on behalf of an adult (>25 years). Databases included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Tools were scored by members on the research team, including patient partners, based on domains of need previously identified in prior meta-analyses. Two reviewers independently screened 5279 citations. Articles included studies that evaluated a resource/tool that helped a family/friend/caregiver SDMs outside of an ICU setting. 828 articles proceeded onto full-text screening, and 25 articles were included for data extraction. The seventeen tools identified focused on different time points/decisions in the dementia trajectory, and no single tool encompassed all the domains of caregiver decision-making needs. Existing tools may not comprehensively support caregiver needs. However, combining tools into a toolkit and considering their application relevant to the caregiver's journey may start to address the gap in current supports.

Geospatial Analysis of Parental Healthcare-Seeking Behavior in the Vicinity of Multispecialty Hospital in India.

The healthcare-seeking behavior of vulnerable groups, such as children under five, depends on a multitude of factors, including the caregiver's decision making. Approximately 60% of Indians seek care from private hospitals. Recent health policy in India has favored the establishment of multispecialty hospitals. However, it remains unclear to what extent this policy has changed the number of Indians seeking healthcare from these government-established multispecialty hospitals. The study aims to assess the health-seeking behavior of parents of children under five in the vicinity of a public multispecialty tertiary care hospital. This was a community-based cross-sectional survey with geospatial mapping conducted among the parents of children under five using a semi-structured questionnaire in Epi-collect mobile app. The study site was an urban slum in a catchment area [within five kilometers (km)] of a multispecialty tertiary care public hospital in the central Indian state of Chhattisgarh. The study was conducted for one year duration from February 2019 to January 2020. A questionnaire was administered to the parents of the children under five (N = 353) after their household confirmation from the nearby Anganwadi center, the community level service providing center under the Integrated Child Development Scheme by the Ministry of Women and Child Development (WCD). The questionnaire included sections for demographic characteristics, the illness pattern among their children, health-seeking decision-making, and more. Descriptive analysis was presented with numbers and percentages. Univariate analysis was used to assess the association between sociodemographic variables and health-seeking characteristics. Statistical significance was considered at p value less than 0.05. We used geospatial mapping using coordinates collected and compiled using the Microsoft Excel version 2021 and analyzed using QGIS (Quantum Geographic Information System) software. Among the parents interviewed patients (N = 353), maternal literacy rates were over 85%. Approximately 54% of the families were below poverty line. Among 95.2% of the families, mothers were part of decision-making regarding their children's health-seeking. Over 92% of the families opted for consultation in a nearby private hospital or dispensary. Geospatial mapping of private hospitals was a favored place for healthcare-seeking by mothers, irrespective of their socioeconomic status or education rather than multispecialty hospital. The majority of the parents in the vicinity of public multispecialty hospitals seek care from private clinics for ailments for children under five. The establishment of public multispecialty tertiary care hospitals, which are mandated for tertiary level of care and research, cannot replace primary-level healthcare institutions, showed that private hospitals were the favored places healthcare seeking by mothers. These primary-level institutions are critical for the management of common ailments for children under five near home and reducing the financial burden on the family, even in the vicinity of a multispecialty hospital.

SUPPORTING A MOTHER WITH DEMENTIA WHO MISTREATED ME: CAREGIVING EXPERIENCES OF STRAINED MOTHER-DAUGHTER DYADS

Abstract Providing care to an aging parent is a normative expectation within most modern societies. Research steadily demonstrates that around two-thirds of caregivers are women, and over one-third of dementia caregivers are adult daughters. Often there is an assumption of natural attachment between mother and daughter—unconditional loyalty and permanent availability. However, overlooked in the literature is the notion that some adult daughters struggle with caregiving decisions regarding a parent with whom they have been maltreated. To date, little research has focused on dementia caregiving dynamics within strained mother-daughter dyads. To address this knowledge gap, data were drawn from the Aging at Home Alone with Alzheimer’s Disease study, an interview-based protocol with a purported sample of 120 community dwelling persons with dementia and their study partner. Thematic analyses were conducted on the subsample of daughters and their mothers with dementia (n=10) who reported a history of maltreatment (e.g., childhood neglect, childhood abuse). Thematic analyses were conducted on all case material for the subsample (e.g., interview data, case notes). Findings indicate four overarching themes: 1. Begrudging caregiving, 2. Fragmentary support, 3. Resurfacing childhood trauma, and 4. Post-traumatic growth and forgiveness. These themes stress the importance of how childhood maltreatment can shape emotional bonds early in life and affect dementia caregiving trajectories. Findings will be discussed in relation to support recommendations for caregiving dyads with a history of parental maltreatment.

Lived experiences of older male caregivers: “That was the Worst!”

IntroductionAlthough caregiving is a traditional female role, older men represent an increasing proportion of family caregivers. This study's aim was to describe lived experiences of men who engaged in later-life caregiving. MethodStreubert's phenomenological method, inclusive of unstructured interviews and respondent validation of a single formalized description, was applied to explore lived experiences of eight older male caregivers. ResultsThree overarching themes characterized older male caregiving: 1) role and life changes, 2) “taking care of business,” and 3) getting over “the worst”. All caregivers spent extensive time in anticipatory planning for potential problems and were dissatisfied with existing resources and services. Each man described a profound, mentally-challenging caregiving crisis that triggered important caregiving decisions. DiscussionStudy findings support an urgent need for research to clarify the mental health needs of older male caregivers and to test interventions that better meet the unique needs of this growing caregiver demographic.

AI-Powered Solutions to Support Informal Caregivers in Their Decision-Making: A Systematic Review of the Literature <sup><a class="tippyShow" data-tippy-arrow="true" data-tippy-content="This article is an extended version of the conference paper: Milella F, Russo DD, Bandini S, How artificial intelligence can support informal caregivers in their caring duties to elderly? a systematic review of the literature. In: AIXAS2023 Italian Workshop on Artificial Intelligence

Due to aging demographics, prolonged life expectancy, and chronic diseases, European societies' increasing need for care services has led to a shift towards informal care supplied by family members, friends, or neighbors. However, the progressive decrease in the caregiver-to-patient ratio will result in a significant augmentation in incorporating intelligent aid within general care. This study aimed to build upon the authors' previous systematic literature review on technologies for informal caregivers. Specifically, it focused on analyzing AI-based solutions to understand the advantages and challenges of using AI in decision-making support for informal caregivers in elderly care. Three databases (Scopus, IEEE Xplore, ACM Digital Libraries) were searched. The search yielded 1002 articles, with 24 that met the inclusion and exclusion criteria. Within the scope of this study, we will exclusively concentrate on a subset of 11 papers on AI technologies. The study reveals that AI-based solutions have great potential for real-time analysis advancement, explainable AI enhancement, and meta-information semantic refinement. While digital assistants can personalize information for caregivers, security and privacy are key concerns. The rise of more integrated and complicated solutions reveals that these technologies suit aging monitoring and informal care coordination in emergencies or deviations from usual activities. Informal caregiver decision assistance can be improved in this scenario.

Preliminary Investigation of the Influence of Treatment Regimen on Outcomes in Behavioral Parent Training

Caregiver engagement and implementation of behavioral strategies are essential to effective interventions targeting childhood behavior problems. The aim of this preliminary investigation was to better understand caregiver decision-making when selecting different treatment regimens in an open trial format. Treatment packages included: (1) an intensive treatment program (ITP), involving a compressed 20-hour intervention occurring 2 hours per day for 10 days; and (2) a standard dosage treatment as usual (TAU) behavioral treatment program, involving weekly 50-minute appointments. Sixty-seven families with a child between 4–11 years old (M age = 5.82) with clinically significant problem behaviors self-referred to a hospital-based outpatient behavior therapy program. Results suggest that while caregivers chose a standard treatment regimen at a ratio of 2:1, compressed treatment (ITP) was associated with increased caregiver engagement and more significant reductions in child target behavior using both direct and indirect measures. Findings provide preliminary support for the use of high dosage treatment regimens as a means of increasing caregiver engagement and in the reduction of problem behavior in young children.

Deprescribing bisphosphonates for older adults with dementia: perspectives of caregivers.

The long-term fracture prevention benefits of bisphosphonates may begin to be overshadowed by the potential burden of adverse effects and polypharmacy for older adults living with dementia as the disease progresses. We characterized factors that influence caregiver decision-making for continuing versus deprescribing bisphosphonates for persons living with dementia. We conducted 11 interviews with family or informal caregivers of older adults living with dementia in the community or in long-term care who had been treated with bisphosphonates. Interviews focused on experiences caring for someone who has experienced a fracture, perceived benefits and harms of bisphosphonates, and experiences with deprescribing. Analyses were conducted using a qualitative framework methodology guided by the Health Belief Model. Most caregivers were male (n = 8), younger than 65 (n = 8) and were an adult child caregiver (n = 8). Three caregivers were Black and five were Latino/a. Attempts to maintain functional independence despite high likelihood of falls was frequently discussed as contributing to fracture risk, in this population. Many caregivers perceived fracture prevention treatment as important, while several noted that it may become less important near the end of life. Perceived benefits of fracture prevention treatment for persons with dementia included improved quality of life and maintaining independence. Although most indicated that bisphosphonates were well tolerated, gastrointestinal adverse effects, preference for fewer treatments, and dementia-related behaviors that interfere with medication administration may be reasons for deprescribing. Conversations grounded in caregiver experiences and "what matters most" may help optimize fracture prevention treatment for older adults with dementia.

75 Factors that Influence Parental Decision-making Regarding Analgesia for their Children with Musculoskeletal Injury-related Pain: A Qualitative Study

Abstract Background Parents/caregivers are often the gatekeepers for the pharmacologic management of their children’s pain. Parents’ unique expertise in assessing their children’s pain reactions, alongside a deep emotional drive to protect their children, make them invaluable advocates and partners. Parents are highly invested in optimizing pain management outcomes for children. Concerns and preferences regarding medications, including opioids, influence their choices. An improved understanding of caregiver decision-making should encourage a family-centred approach to communication with parents when deciding analgesic plans for children with acute pain, facilitate shared clinical decision-making, and optimize paediatric pain management outcomes in the clinical setting. Objectives Our primary objective was to explore and understand caregiver decision-making as it relates to acute pain management for children presenting to the emergency department, with particular focus on opioids. Design/Methods This qualitative study was embedded within an ongoing paediatric clinical trial (‘The No OUCH Trials’, NCT03767933), which aims to evaluate the clinical efficacy of a combination of oral opioid (hydromorphone) and non-opioid (ibuprofen and acetaminophen) analgesics to manage paediatric musculoskeletal injury-related pain. This study employed one-on-one semi-structured interviews. Parents of children with acute musculoskeletal injuries were recruited from three Canadian paediatric emergency departments (Stollery Children’s Hospital [Edmonton, Alta.], CHU Sainte-Justine [Montreal, Qué.], and Winnipeg Children’s Hospital [Winnipeg, Man.]). Interviews were conducted via telephone from June 2019 to March 2021. Verbatim transcription and thematic analyses occurred concurrently with data collection, supporting data saturation and theory development considerations. Results Twenty-seven interviews were completed. Five major themes regarding pain assessment and treatment emerged: a) My child’s comfort is a priority; b) Every situation is unique; c) Opioids only if necessary; d) Considerations when choosing opioids; and e) Pain research is important. Overall, parents were highly comfortable with their assessment of their child’s pain. Participants’ willingness to use opioid analgesia for their children was primarily dependent on perceptions of injury and pain severity. Although considerations for opioid use were similar between opioid-averse and opioid-willing families, the trade-offs between maximizing pain relief and minimizing risks were weighed differently. Conclusion Our study revealed that parents assess their child’s pain and distress as a global entity, with great confidence in their own assessment and decision-making. For most parents, the desire to relieve their children’s pain outweighed concerns of addiction, misuse, and adverse events when making decisions about opioid analgesia for short-term use. These results can inform evidence-based family-centred approaches to co-decision-making of analgesic plans for children with acute pain.

Caregiving across generations: Do older adults with more grandchildren get another bite at the “sandwich” generation?

Understanding the influence of grandchildren on long-term care use is a growing issue. Indeed, many countries, middle-aged adults provide unpaid care for aging family members, often their parents, at home. Although the influence of adult children's availability on their aging parents' caregiving decisions has been widely studied, the influence of grandchildren remains largely unstudied. Parental time allocated to childcare may compete with elder care, necessitating paid home care or transfer to a nursing home. Alternatively, grandparents may provide childcare, increasing incentives to keep grandparents at home. Using data from the Survey of Health, Ageing and Retirement in Europe (75,296 observations from 11 countries covering years 2004–2018), we exploit an instrumental variable strategy to study the effect of grandchildren on grandparents' long-term care decisions, specifically, use of paid home care or transfer to a nursing home. We use the generosity of maternity leave policies in time and across countries as an instrumental variable to identify the effect of the number of grandchildren. We find that the presence of grandchildren significantly increases the likelihood of having grandparents live at home: the probability of paid home care significantly increases while the probability of nursing home admission falls significantly. In conclusion, policies influencing the number of grandchildren in families have an indirect impact on long-term care use trajectories, confirming that family policies and long-term care policies are strongly imbricated and should not be considered separately.

Understanding the caregiving experiences of Asian Indian, Chinese, Korean, and Vietnamese American family care partners of persons living with dementia

Objectives Disparities impacting dementia health care exist in racial/ethnic minority groups, including Asian Americans, an understudied population in Alzheimer’s disease and related dementias. The qualitative study explored caregiving experiences and potential cultural influences among Asian Indian, Chinese, Korean, and Vietnamese family care partners of persons living with dementia. Methods We conducted focus groups and individual interviews with 32 care partners from these four Asian subgroups using Zoom, WeChat, or telephone. Results Four themes emerged from the data: (1) Family obligations influencing caregiving decisions; (2) Evolving challenges related to dementia caregiving; (3) Caregiving burdens/negative impacts from caregiving (relationship burdens and emotional distress); and (4) Coping with their situation in their own ways (cognitive, behavioral, and social strategies).Conclusion: Cultural values (e.g. familism or filial piety) played a significant role in caregiving decisions and experiences. There was a need to raise public awareness of dementia and create culturally and linguistically appropriate training programs for this population.

Caregiving for Older Adults With Dementia During the Time of COVID-19: A Multi-State Exploratory Qualitative Study.

This qualitative semi-structured interview study explores how 64 family caregivers for older adults with Alzheimer's Disease and related dementias across eight states experienced and executed caregiving decisions before and during the COVID-19 pandemic. First, caregivers experienced challenges communicating with loved ones and healthcare workers in all care settings. Second, caregivers displayed resilient coping strategies in adapting to pandemic restrictions, finding novel strategies to balance risks while preserving communication, oversight, and safety. Third, many caregivers modified care arrangements, with some avoiding and others embracing institutional care. Finally, caregivers reflected on the benefits and challenges of pandemic-related innovations. Certain policy changes reduced caregiver burden and could improve care access if made permanent. Telemedicine's increasing use highlights the need for reliable internet access and accommodations for individuals with cognitive deficits. Public policies must pay greater attention to challenges faced by family caregivers, whose labor is both essential and undervalued.

(045) Standard of Care and Patient Perspectives Regarding Early Genital Surgery for Infants with Congenital Adrenal Hyperplasia

Abstract Introduction Opposition to normalizing genital surgeries for children with disorders of sex development (DSD) continues to grow. However, some have argued that congenital adrenal hyperplasia (CAH) should not be lumped in with other DSD conditions and therefore normalizing surgery for CAH infants with XX chromosomes and ambiguous genitalia is justifiable. Furthermore, patient and caregiver perspectives/satisfaction regarding early genital surgery varies greatly. The heterogeneity of views regarding early genital surgery in CAH infants may make navigating the treatment of CAH patients difficult and unique from the treatment of other DSD. Objective This project seeks to summarize the viewpoints regarding CAH and early genital surgery available in the biomedical literature. Methods We conducted a systematic literature review using the database Ovid MEDLINE using the terms “congenital adrenal hyperplasia,” “urogenital surgical procedures,” “sex reassignment surgery,” “genitalia surgery,” and “reconstructive surgical procedures.” We limited the search to English articles published from 2000 to October 2022. We limited the age range to children from birth to 23 months. We included articles with results that offered recommendations regarding decision making in early genital surgery, patient/parent perspectives or satisfaction regarding early surgery, and clinicians’ perspectives. We excluded articles that discussed the science of disease or surgical techniques and outcomes but did not address the complex perspectives regarding CAH surgery. Results Of the 118 articles initially retrieved, we included 53 articles. A variety of views were expressed regarding early genital surgery. Of the three articles that explicitly evaluated patient perspectives using a survey, most people with CAH seemed to approve of early genital surgery. In contrast, narrative pieces have highlighted the psychological trauma of receiving early genital surgery without their consent. Interestingly, many of the excluded articles discussed surgical techniques and their aesthetic outcomes for people with CAH, but failed to investigate the psychological impact that surgeries might have on the patient. Seven articles specifically evaluated the perspectives of the parent/caregiver in the decision making or possible regret process. One article addressed the effects of early surgery on fertility. Finally, genital surgeries and expectations also drastically vary from country to country. In more conservative countries such as Egypt, Sudan, and Nigeria, normalizing surgery is acceptable as a way to clearly define the child’s sex. In more progressive countries, such as Germany and Malta, these surgeries are not accepted or expected. Conclusions The biomedical literature is unclear about the global standard of care regarding CAH early genital surgery. Although there is a plethora of research regarding surgical technique, aesthetic outcomes, and even parental and caregiver decision making, there is less research regarding the long-term psychological impact of these surgeries. More research needs to amplify the voices of patients with CAH to inform the evolution of the standard of care. Disclosure No

Factors related to eczema clinical trial participation among adult patients and caregivers

BackgroundEczema can be difficult to treat due to its chronic, heterogeneous nature. Effective long-term treatments for adults and children are needed. Little is known about what considerations influence eczema patient and caregiver decision-making regarding clinical trial participation (CTP). This study identifies factors that adult patients and caregivers consider important for CTP and determines if differences exist between these groups. MethodsA 46-question survey was administered May 1-June 6, 2020, to adults and caregivers of children with eczema. Respondents were asked to rate the importance of a series of factors when considering CTP; adults and caregivers were compared. ResultsOut of 31 total factors queried, eleven factors differed significantly in importance ratings between adults (n = 470) and caregivers (n = 134). The route of therapy (p = 0.030), side effects (p = 0.014), washout period (p = 0.028), receiving a placebo (p = 0.027), rescue therapy option (p = 0.033), access to test drug after trial (p = 0.027), sticking with the clinical trial regimen (p = 0.025), fit with work/school (p = 0.005), impact on overall health (p = 0.008), and satisfaction with current treatment (p = 0.033) were all more likely to be rated as important by caregivers than by adult patients. Only altruism was rated more highly by adult patients than caregivers (p = 0.027). ConclusionsCaregivers are more likely than adults to attribute high importance to factors that may affect their child's eczema or well-being when considering CTP. Patient-centered CTP education materials and decision aids may support patients and caregivers in CTP decision-making.