Younger Caregivers Research Articles

Robust caregiver-youth discrepancies in irritability ratings on the affective reactivity index: An investigation of its origins

ObjectiveThe Affective Reactivity Index (ARI) is widely used to assess young people's irritability symptoms, but youth and caregivers often diverge in their assessments. Such informant discrepancy might be rooted in poor psychometric properties, the differential conceptualization of irritability across informants, or reflect sociodemographic and clinical characteristics. We use an out-of-sample replication approach and leverage longitudinal data, available for a subset of the participants, to test these hypotheses. MethodAcross two independent samples (NCohort-1 = 765, 8–21 years; NCohort-2 = 1910, 6–21 years), we investigate the reliability and measurement invariance of the ARI, examine sociodemographic and clinical predictors of discrepant reporting and probe the utility of a bifactor model for cross-informant integration. ResultsDespite good internal consistency and 6-week-retest-reliability of parent (Cohort-1: α = 0.92, ICC = 0.85; Cohort-2: α = 0.93) and youth forms (Cohort-1: α = 0.88, ICC = 0.78; Cohort-2: α = 0.82), we confirm substantial informant discrepancy in ARI ratings (3 points on a scale from 0 to 12), which is stable over six weeks (ICC = 0.53). Measurement invariance across informants was weak, indicating that parents and youth may interpret ARI items differently. Irritability severity and diagnostic status predicted informant-discrepancy, albeit in opposing directions: higher severity was linked to relative, higher irritability-ratings by youth (Cohort-1: β = −0.06, p < .001; Cohort-2: β = −0.06, p < .001), while diagnoses of Disruptive Mood Dysregulation Disorder (Cohort-1: β = 0.44, p < .001; Cohort-2: β = 0.84, p < .001) and Oppositional Defiant Disorder (Cohort-1: β = 0.41, p < .001; Cohort-2: β = 0.42, p < .001) predicted relative higher irritability-ratings by caregivers. In both datasets, a bifactor model parsing informant-specific from shared irritability-related variance fit the data well (CFI = 0.99, RMSEA = 0.05; N2: CFI = 0.99; RMSEA = 0.04). ConclusionParent and youth ARI reports and their discrepancy are reliable and reflect different interpretations of the scale items; hence they should not be averaged. This finding also suggests that irritability is not a unitary construct. Future work should investigate and model how different aspects of irritability might differ in their impact on the responses of specific informants.

Young adult caregivers in higher education: a study of prevalence in France

ABSTRACT Young adult caregivers are people aged 18–25 years who care for a relative with an illness/disability. They are an understudied population. In France, there are currently no data and no public services specifically targeting them while literature showed that caregiving has consequences on academic development. As the pursuit of higher education is a societal expectation, the aim of this study was to examine the prevalence, characteristics, and mental health of young adult caregiver students in France to promote policy and practice development. Between February 2019 and April 2021, 6767 students (77.28% women; Mage = 20.14, SDage=1.87) answered a self-report questionnaire assessing sociodemographic-academic characteristics, relative’s illness/disability, caregiving activities, perceived support, and mental health. Results showed that 63.17% of participants were confronted with the illness/disability of a relative, and 15.86% provided a high level of support and could thus be classified as young adult caregivers. They were generally females from low-income families who experienced financial hardship, and they mostly cared for a mother or grandparent with a physical or mental illness. Regarding academic characteristics, they were mostly enrolled on a care-related course, in some cases via a distance learning program. They reported current and previous academic difficulties. They reported poorer mental health than noncaregivers. The identification procedure based on the extent of caregiving activities should be tailored to the characteristics of emerging adults. Considering the high prevalence of young adult caregivers in France, there is an urgent need to enhance awareness to better identify and support those in higher education.

“Against all Odds”-Increasing Demand and Uptake of Immunization Services Among Non-Fully Immunized Children in Northern Nigeria Using a Positive Deviance Approach: Implementation Science Research

Introduction: Children still die from vaccine-preventable diseases. Nigeria contributes 30% of unimmunized children &lt;5 years globally. This study was conducted in 4 Local Government Areas (LGA) in Niger and Gombe States employing the positive deviance (PD) approach to increase vaccination demand in low child immunization coverage settings. Methodology: The was a quasi-experimental study, conducted between December 2019 and April 2021, comparing pre- and post- intervention vaccination uptake after 5 months of intervention among 400 caregivers of non-fully immunized children (CNFIC). We trained 40 caregivers of fully immunized children (CFIC) as mentors using a participatory learning and action tool. The CNFIC were matched in ratio 10:1 with CFIC and exposed to 8 impact meetings and 10 home-visits using communication materials to increase vaccination knowledge. Paired T-test and adjusted odd ratios from logistic regression models were used to determine change in immunization uptake and factors associated with full immunization for age, respectively. Result: A total of 343 CNFIC were successfully followed up during intervention. The age range of children in the study was 2 to 12 months with the female (178) slightly more than the male (165). The mean vaccine uptake rate increased from 43.7% to 85.9% (T= -29.3, P&lt;0.005) with 55.4% fully vaccinated for age post-intervention. Safer LGA residence, being a housewife caregiver, and younger caregivers &lt;30 years were positive determinants of full vaccination. Conclusion: Adopting the PD approach to low uptake vaccination settings can increase vaccination demand and coverage. This approach can be leveraged in other public health challenges.

Caregiving Activities and Its Impacts on Young Carers: Analysis of the Family Cases in the KBS 1TV program &lt;Dong-Haeng&gt;

본 연구의 목적은 ‘숨겨진 집단(hidden group)’으로 묘사되는 영케어러(young carers)가 어떤 환경에서 어떠한 돌봄활동을 하고 있는지 규명하고 그러한 활동이 아동에게 미치는 영향을 탐색하는 것이다. 이를 위해 KBS ITV <동행>에 출연한 가족사례에 대해 양적⋅질적 내용분석을 실행하였다. 먼저, 지난 2년 간(2020년 7월~2022년 6월) 방영된 99편 중 가족원을 돌보는 아동이 있는 41개의 사례를 선정한 후 빈도분석, 교차분석 등을 통해 영케어러의 인구사회학적 특성과 가정환경을 파악하였다. 이어서, 연령에 비해 과도한 수준의 돌봄활동을 수행하는 것으로 평가된 30명의 영케어러를 선정하여 구체적인 돌봄활동을 파악하였으며, 질적분석을 통해 돌봄활동이 영케어러에게 미친 영향을 조명하였다. 영케어러들은 가사, 가족원 돌봄은 물론 가정관리, 정서적 지원, 경제활동에 이르기까지 다양한 영역에서 돌봄활동을 수행하였는데, 설거지, 요리 및 상차림, 애정과 감사를 언어로 표현하는 것, 청소, 빨래 등이 특히 높은 참여율을 보였다. 돌봄활동으로 인한 부정적 영향으로는 학습활동에 투입할 에너지와 시간 부족, 친구관계 형성 및 유지의 어려움, 박탈당한 놀 권리, 가족상황을 우선적으로 고려한 진로선택, 장기간 지속되는 돌봄을 둘러싼 심리정서적인 어려움이 확인되었으며, 긍정적인 영향으로는 성숙함과 어른스러움, 경제개념과 삶의 지혜 터득이 도출되었다. 분석 결과를 바탕으로 영케어러를 위한 개입방안을 다각적으로 모색하고, 사회복지교육에서의 시사점을 제시하였다.The purpose of this study is to identify in what environment and what kind of caring activities are performed by young carers, described as a ’hidden group’, and to explore the impact of such activities on the children. To this end, a quantitative and qualitative content analysis was conducted on family cases appearing in the KBS ITV <Dong-Haeng> program. First, among the 99 episodes aired over the past two years (July 2020 to June 2022), 41 cases with children under the age of 18 taking care of family members were selected. Using frequency analysis and cross-tabulation, demographic characteristics and home environment were identified. Then, 30 young caregivers who were evaluated to be performing an excessive level of caregiving activities were selected, and their specific caring activities were identified and analyzed using a mixed method. Young carers have performed caring activities in a variety of areas including domestic tasks, sibling care, personal care, household management, emotional care, and financial care. Specifically, washing dishes, cooking and table setting, expressing verbal affection and gratitude to care receivers, cleaning, and laundry were observed most frequently in the cases. The impact of caring activities on young carers was illuminated through qualitative analysis. Negative effects of caring activities are more dominant and categorized as follows: lack of energy and time to invest in learning activities, difficulty in forming and maintaining friendships, deprivation of right to play, education and career choice influenced by family situations over individual needs, and psychological and emotional difficulties surrounding long-term care. As positive effects, maturity, sense of economy and life wisdom were derived. Based on the analysis results, interventions for young caregivers are suggested in multiple dimensions and implications for social welfare education are discussed.

Assessing health, psychological distress and financial well-being in informal young adult caregivers compared to matched young adult non-caregivers

ABSTRACT Young adult caregivers (YACs) are faced with the atypical challenge of providing informal (i.e. not paid) care to a family member, while simultaneously at a critical developmental stage in which many major life decisions and milestones are taking place. Adding the challenge of caring for a family member during this already complex time period may have a detrimental impact on young adults’ (YAs) own overall health and well-being. The aim of this study was to examine differences in overall health, psychological distress, and financial strain among a propensity matched sample of YACs compared to young adult non-caregivers (YANCs) from a nationally representative database and to examine differences in these outcomes by caregiving role (caring for a child vs. other family member). YAs (aged 18–39, N = 178) identifying as a caregiver (n = 74) were matched with YANCs (n = 74) on age, gender, and race. Results revealed that YACs exhibited higher psychological distress, lower overall health and more sleep disturbance and higher financial strain compared to YANCs. YAs caring for family members other than children also reported higher anxiety and fewer hours spent caregiving compared to YAs caring for a child. YACs appear to be at risk for impairments in health and well-being compared to their matched peers. Longitudinal research is needed to understand how caregiving during young adulthood impacts health and well-being across time.

“We are experiencing pain on our own”: mental health care to prevail over impacts of cultural silence on HIV

PurposeThis qualitative case study aims to investigate how current services meet the emotional needs of young women growing up with perinatally acquired human immunodeficiency virus (HIV). Young women (15–19 years old), caregivers and service providers were recruited through three multidisciplinary HIV management centres in Malawi.Design/methodology/approachIn-depth interviews were used to collect data for 14 “cases” (each “case” involved a young woman, a caregiver and a service provider, for a total of 42 participants). The interviews with adolescents were conducted using an innovative visual method known as the “my story” book.FindingsThematic analysis revealed that young women experienced traumatic experiences and emotional neglect after being diagnosed as HIV positive. Lack of adult support networks and social isolation were identified as intersecting factors contributing to their mental distress. According to the findings of this study, HIV care should more explicitly include comprehensive mental health-care services. This provision should include ongoing individualised counselling sessions, supplemented by communication skills training to help break the prevalent cultural silence on HIV issues. Young people living with HIV, in general, and young women, are more likely to experience mental health issues than their non-infected peers. Integrating comprehensive mental health evaluation and treatment into HIV care for young people can be beneficial.Practical implicationsMental health issues are critical and underserved challenges among young people living with perinatally acquired HIV. Women experience a higher prevalence of mental challenges than men. Integrating comprehensive mental health evaluation and treatment into HIV care for young people can be beneficial. Therefore, interventions to assist young people with mental health issues are needed within the context of HIV management in Malawi.Originality/valueMany studies on mental health and HIV/AIDS have been conducted. However, there is very little information as regards the emotional needs of young women growing up with perinatally acquired HIV. This study fills the void.

Identifying and Supporting Students with a Chronically Ill Family Member: A Mixed-Methods Study on the Perceived Competences and Role Views of Lecturers

Young adult caregivers experience reduced wellbeing when the combination of family care and an educational program becomes too demanding. We aim to clarify the role views, competences, and needs of lecturers regarding the identification and support of these students to prevent negative mental health consequences. A mixed-methods explanatory sequential design was used. We collected quantitative data using a survey of lecturers teaching in bachelor education programs in the Netherlands (n = 208) and then conducted in-depth interviews (n = 13). Descriptive statistics and deductive thematic analyses were performed. Most participants (70.2%) thought that supporting young adult caregivers was the responsibility of the educational institution, and 49% agreed that it was a responsibility of the lecturer, but only 66.8% indicated that they feel competent to do so. However, 45.2% indicated that they needed more training and expertise to identify and support these students. All interviewees felt responsible for their students' wellbeing but highlighted a lack of clarity regarding their role fulfillment. In practice, their ability to identify and support these students depended on their available time and level of expertise. The lecturers required agreements on responsibility and procedures for further referral, as well as information on support and referral opportunities, communication skills courses, and peer-to-peer coaching.

Engaging young people and their caregivers in support services following harmful sexual behaviors: Qualitative analysis

BackgroundHarmful sexual behavior (HSB) displayed by children and young people under the age of 18 has been described as developmentally inappropriate, may be harmful towards self or others, or be abusive towards another child, young person, or adult. Early intervention and treatment completion are crucial to cease HSB, reduce impacts and address underlying issues for the child who has displayed HSB. Considerable shame attaches to seeking help for this stigmatized behavior which may result in dropout from support services. Understanding young people and caregivers' experiences of what facilitates or hinders their engagement with support services is therefore critical to preventing re-occurrence of HSB and keeping children safe. ObjectiveThis article draws on the first-hand experience of young people and caregivers to address the question: What have they found helpful and unhelpful when engaging with services for harmful sexual behavior? Participants and settingParticipants were recruited from public health and youth justice services in the state of New South Wales, Australia. The 31 participants included 11 young people (aged 14 to 17) and 20 caregivers (parents, foster or kinship carers). MethodsQualitative data were collected through individual semi-structured interviews, following which thematic analysis was conducted. ResultsData analysis identified three helpful responses: (1) non-judgmental recognition of crisis; (2) child-centred and family-focused orientation; and (3) multi-dimensional interventions. Unhelpful responses included: (1) closed doors (an inability to access a service) (2) stigmatization of HSB; and (3) reduced caregivers' autonomy. ConclusionsGreater involvement of caregivers, non-stigmatizing language and coordinated responses between generalist and specialist services are needed to facilitate service engagement.

Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers

Survivorship education and anticipatory guidance represent an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. Bridge to Next Steps is a two-visit program, within 8weeks prior to treatment completion and 7months post treatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors (age range 1-23years) and 46 caregivers participated. Participants completed pre- and post-intervention measures: Distress Thermometer and Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety/emotional distress (ages ≥8years), and perceived preparedness survey (ages ≥14years). AYA survivors and caregivers completed a post-intervention acceptability survey. Most participants (77.8%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers' distress and anxiety scores decreased from pre to post intervention (p<.01). Survivors' scores remained the same, which were low at baseline. Survivorsandcaregiversfelt more prepared for survivorship from pre to post intervention (p=.02, <.01, respectively). Bridge to Next Steps was feasible and acceptable for most participants. AYA survivors and caregivers felt more prepared for survivorship care after participation. Caregivers reported decreased anxiety and distress from pre to post Bridge, whereas survivors remained at a low level for both. Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care can contribute to healthy adjustment.

Prevalence and Predictors of Using Antibiotics without a Prescription in a Pediatric Population in the United States.

Non-prescription antibiotic use (using antibiotics without clinical guidance) increases the risk of the development of antibiotic resistance, adverse drug reactions, and other potential patient harm. Few studies have explored non-prescription use in children in the U.S. From January 2021 to April 2022, a diverse sample of caregivers of children under 18 years were surveyed in English and Spanish at two safety net clinics in Texas. We assessed the prevalence of antibiotic use in children in the previous 12 months, storage of antimicrobials, and intended use of non-prescription antibiotics (professed intention for future non-prescription antibiotic use). We also measured sociodemographic factors, types of antibiotics used, and symptoms that trigger non-prescription use. The response rate was 82%, and 17% were surveyed in Spanish. Of 322 participants surveyed, three Spanish-speaking caregivers reported giving non-prescription antibiotics to their child in the previous 12 months. Approximately 21% (n = 69) reported storing antimicrobials at home, specifically amoxicillin (n = 52), clindamycin (n = 10), cephalexin (n = 5), penicillin (n = 3), and trimethoprim/sulfamethoxazole (n = 3). Nearly 15% (n = 46) reported intention to give non-prescription antibiotics to their children. Younger caregiver age was associated with storage and intended use of non-prescription antibiotics. Our findings will guide the development of an educational intervention to decrease non-prescription antibiotic use.

Young Carers' Needs and Changing Experiences during an Era of Austerity.

Many children caring for ill or disabled family members remain 'hidden' and 'invisible' in our communities. This study is the first to explore patterns of change, over time and throughout austerity, for children with caregiving roles to better understand how their lives differ from those of their non-caregiving peers. A survey of 2154 children, aged 9-18 years in the general population, and a further 21 children, aged 8-18 years and known to be young carers from the same English unitary authority, was conducted to gain an in-depth understanding of children's perceptions and experiences of what they do to help at home. This study shows that children with caregiving roles remain a distinctive group who assume more domestic and caring responsibilities than their peers, and who also perform many of these activities more frequently than young caregivers in 2001. Approximately 19% of the respondents in the general population showed signs of being in a caring role, double the percentage identified by the author in 2001, 72% of whom were from Black and Minority Ethnic backgrounds. Indicating over time higher levels of unmet needs among parents and other family members who are ill or disabled, these findings have important implications for professional policy, planning and practice across adult and children's services.

Internet use by informal caregivers in Chile: An analysis including age and gender perspectives

ABSTRACT Objectives This study explored the relationship between Internet use and informal caregivers’ characteristics. Methods We used the Chilean Sociodemographic Characterization Survey. A total of 86,172 informal caregivers were identified. We conducted a weighted χ2 to test differences in 10 types of Internet use and weighted logistic regressions with caregivers’ characteristics as predictors of Internet use. Results Younger caregivers engaged in more types of use than the older ones. Education level was positively associated with all types of use, such as searching for information (OR = 3.52, CI 95% [2.34, 5.29]). Age was negatively related to Internet use. Women used the Internet more to communicate via social networks. Being single reduced the likelihood of performing certain types of use, such as information seeking. The number of people living in households has increased entertainment. Conclusions Older caregivers with lower education levels are at greater risk of digital exclusion. The same occurred in some types of use with single caregivers, where fewer people lived in the household. Clinical implications The Internet can be a tool for coping with caregiving tasks and their negative consequences. Interventions should consider these characteristics when promoting online tools and performing online interventions to reach the broadest possible audience.

Youth perceptions toward managing elderly care among low-income household families using the My-Elderly-Care-Skills Module.

Caregivers of elderly people need the right education and empowering skills to manage their own health needs and the elderly people they care for. The study aimed to explore youth perceptions of the My-Elderly-Care-Skills Module intervention and its perceived feasibility. This study involved youth respondents (18-30 years old) from low-income households who are accountable to providing care for independent older people (60 years or above) living in the same house. A qualitative study using a case study design was used to assess youth perceptions based on the content of the My-Elderly-Care-Skills module, by focusing on its implementation usage and usefulness for the care of the elderly. A total of 30 youths voluntarily participated in the online training workshop during the COVID-19 pandemic movement restriction order period. There were multiple sources of data, such as video recorded on reflection of care given at home, text messages in a WhatsApp group, and in-depth interviews during small group online meetings. Data were recorded and transcribed verbatim for common themes before a theme analysis was conducted. Inductive content analysis was performed after the saturation point was met. Thematic analysis derived two domains of feasibility: operational and technical feasibility. There were three themes under operational practicality (improving awareness, addressing the caregiving skills needs, and seeking resources for knowledge) and three themes for technical practicality (easily used and informative, skill in effective communication, and program fulfillment). It was verified that it is feasible for young caregivers of the elderly to participate in the My-Elderly-Care-Skills training intervention as it helps in improving knowledge and skills performance in managing and caring for the elderly.

Die Situation pflegender Angehöriger im erwerbsfähigen Alter in der COVID-19-Pandemie – Ergebnisse einer Onlinebefragung in Deutschland

ZusammenfassungHintergrundDie Folgen der COVID-19-Pandemie haben verschiedene Personengruppen vor große Herausforderungen gestellt; eine dieser Gruppen sind pflegende Angehörige. Die vorliegende Studie untersucht, welche Veränderungen die Pandemie für pflegende Angehörige mit sich gebracht hat und in welchem Ausmaß sich Lebensqualität und Pflegebelastung subgruppenspezifisch verändert haben.MethodeDie Datenerhebung erfolgte im Sommer 2020 in einer Querschnittsstudie mit pflegenden Angehörigen im erwerbsfähigen Alter (N = 1143). Neben soziodemografischen Daten wurden Angaben zu Versorgungssituation, Vereinbarkeit von Pflege und Beruf sowie Belastung und Lebensqualität in einer Onlinebefragung erhoben. Versorgungssituation und Vereinbarkeit von Pflege und Beruf wurden deskriptiv analysiert. Für die Analysen der Veränderung der Lebensqualität und der Belastung wurden logistische Regressionsmodelle verwendet.ErgebnisseDie Versorgungssituation hat sich für viele Befragte (54,7 %) während der Pandemie geändert und ist zeitlich aufwendiger geworden. Für 70,8 % ist die Vereinbarkeit von Pflege und Beruf schwieriger geworden. Mit dem Pandemiemanagement der eigenen Arbeitgeber:innen zeigt sich die Mehrheit zufrieden (65,9 %). Die Lebensqualität hat ab- und die Belastung zugenommen, besonders deutlich für jüngere Pflegende, Frauen und Pflegende von Personen mit hohem Pflegebedarf.DiskussionDie Ergebnisse weisen darauf hin, dass sich die Lebenssituationen pflegender Angehöriger während der COVID-19-Pandemie verschlechtert haben. Entscheidungsträger:innen sollten dies anerkennen und besonders betroffene Subgruppen pflegender Angehöriger unterstützen. Zukünftig ist es wichtig, die informelle häusliche Pflege ebenso wie Versorgungssettings der professionellen (Langzeit‑)Pflege in gesundheits- und sozialpolitische Pandemiekonzepte einzubeziehen.

Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences

ABSTRACT Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers’ perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, “local” hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.

LOVE OR OBLIGATION TO “SEE THEM THROUGH:” BURDENS AND GAINS IN CAREGIVING FOR CENTENARIANS

Abstract In Hong Kong, the population of centenarians increased from about 3,000 in 2011 to over 10,000 in 2021. The growth of this population has led to challenges concerning how far family caregivers, who are usually older adults themselves, could care for their spouse or parents. In 2021, we launched the 2nd Hong Kong Centenarian Study and included the voices of family caregivers. Notwithstanding the increased difficulties of caregiving during COVID outbreaks, our interviews with 120 caregivers revealed low to moderate scores of caregiving burden and gains (measured by 4-items from the Zarit Burden Scale and 5-items from the Positive Aspects of Caregiving Scale). Female and older (aged 70 or above) caregivers reported more emotional distress, burden, and poorer self-rated health, while younger caregivers (less than 70 years old) sustained a wider social network. Financial stress was related to smaller social network size and more emotional distress. When being asked what sustained their motivation to care for their spouse or for their parents, “filial obligation to see them through” and “repaying for love” were answered as key motivators. Caregivers also derived pride and satisfaction from contributing to the remarkable longevity of their loved ones or from witnessing their loved ones recovering from life-threatening traumas (e.g., falls, hospitalization), but felt helpless when faced with escalating care needs due to their own deteriorating physical health and capacities. “Double-old caregiving” will become more common, and society will need to overhaul the care system to support these motivated families who have escalated care needs.

CONTEXTUAL FACTORS RELATED TO CAREGIVER IDENTITY DISCREPANCY IN EMERGING ADULT CAREGIVERS

Abstract Approximately 12-18% of unpaid family caregivers to older adults in the U.S. are 18-25 years old, yet minimal research focuses on this subgroup of caregivers (Levine, 2005). Because caregiver identity theory postulates that the extent to which informal caregivers integrate their caregiving roles and duties into their identity may relate to caregiver distress (Montgomery &amp; Kosloski, 2012), contextual factors related to higher reported caregiver identity discrepancy should be assessed. In a sample of 135 emerging adult informal caregivers, the current study compared caregiver identity discrepancy across two factors: level of caregiving responsibility and caregiver gender. Caregiving responsibility had four groups: (1) primary with minimal help (n=54), primary but receiving some help (n=51), secondary (n=18), or shared (n=12). Caregiver identity discrepancy was measured using the five subscales of the Family Caregiver Identity Scale (Eifert et al., 2019). Caregiver identity discrepancy differed significantly by caregiving responsibility (p&amp;lt;.001) and gender (p=.046). Emerging adult caregivers identifying as women reported statistically more caregiver identity discrepancy in family obligation (p=.003) and master identity (p=.036) domains than men. Caregiving responsibility showed statistically significant differences in role engulfment (p&amp;lt;.001), loss of shared identity (p&amp;lt;.001), family obligation (p=.013), and master identity (p=.010) domains of identity discrepancy. Emerging adult caregivers identifying as the primary caregiver with minimal help from others reported significantly more identity discrepancy than all other groups across subscales. These results demonstrate that young caregivers who have little support in task responsibilities and identify as a woman may be at particular risk for experiencing caregiver identity discrepancy.

CAREGIVING FOR AN OLDER RELATIVE IN YOUNG ADULTHOOD

Abstract Caregivers are typically viewed as midlife or older individuals, but nearly 25% of self-identified caregivers are young adults (aged 18 to 29). We report findings from a small study of Hispanic/Latinx, African American, and Asian American young adult caregivers, using: quantitative and open-ended assessments and weekly diary surveys. We assessed caregiving tasks young adults provide, rewards, and detriments of providing care. In open-ended responses, young adults described their caregiving roles as emotional as well as hands on, and reported filling in for other caregivers who could not help. They reported goal disruptions (e.g., education, romantic ties) associated with caregiving, but felt they were repaying debts to their grandparents through caregiving. Diary data document vicissitudes in weekly caregiving experiences and well-being. Discussion focuses on the unique implications of caregiving ties between young adults and their grandparents when the grandparent incurs physical or cognitive health impairments.

Autistic and non-autistic young people's and caregivers' perspectives on COVID-19-related schooling changes and their impact on emotional well-being: An opportunity for change?

Autistic young people experience poorer mental health and well-being compared to their non-autistic peers. Navigating the complex social, academic, procedural and sensory aspects of school may be particularly challenging for autistic young people and contribute to poorer mental well-being. The COVID-19 pandemic caused unprecedented school changes and provided a unique opportunity to gather caregiver's and young people's perspectives on the impact of school and pandemic-related school changes on the well-being of both autistic and non-autistic young people. We asked for the views of caregivers and young people aged 11-18 years gathered across three timepoints between May and December 2020. Their responses revealed both benefits and challenges associated with school changes. Insights into possible lessons from the pandemic and recommendations for more flexible, individualised and strengths-based educational practices are discussed.

In Caring for Older People in Low- and Middle-Income Countries, Do Older Caregivers Have a High Level of Care Burden and Psychological Morbidity Compared to Younger Caregivers?

Caregivers have become older as longevity increases. Caregiving for older people can cause burdens and psychological morbidity, which are the chronic stresses perceived by informal caregivers. This study aimed to compare the levels of care burden and psychological morbidity between older and younger caregivers in low- and middle-income countries. A cross-sectional survey was conducted in Cuba, the Dominican Republic, Peru, Venezuela, Mexico, Puerto Rico, and China. Data were collected by the 10/66 Dementia Research Group. The Zarit Burden Inventory was used to measure the levels of burden on caregivers. Psychological morbidity was assessed through the Self-Reporting Questionnaire. Data from 1348 households in which informal caregivers provided home care for one older person were included in the analysis. Multivariable logistic regression was used to investigate the effects of caregiver age upon care burden and psychological morbidity. A fixed-effect meta-analysis model was used to obtain a pooled estimate of the overall odds ratios of each country. The unadjusted and the adjusted model for potential covariates revealed no significant difference in care burden and psychological morbidity between older caregivers and younger caregivers. The adjusted pooled estimates, however, indicated a lower psychological morbidity among older caregivers (OR = 0.61, 95% CI: 0.41-0.93, I2 = 0.0%). The demographic implications of caregiver age may suggest different policy responses across low- and middle-income countries.