Caregiving Through Turbulent Times: Findings From the MIT AgeLab’s Longitudinal Study of Family Caregivers

Nearly one in five Americans is an unpaid family caregiver, and the need for family caregivers is projected to grow over the next several decades in the face of longer lifespans (AARP 2020). Yet the increasing centrality of family caregivers for providing care to an aging population highlights two knowledge gaps: first, the degree and experience of burden and stress caregivers manage around balancing care with other family and work responsibilities; and second, a lack of knowledge about the caregiver journey and the microtasks of care, including how caregivers leverage – or not – different tools, technologies and resources to support the care they provide. To develop a deeper understanding of these questions and others, the MIT AgeLab has built a research panel of over 1200 caregivers providing care to another adult family member. This symposium will present findings from the MIT AgeLab Caregiver Panel, including: 1) an examination of the extent to which family caregivers identify as such and how they feel about their roles; 2) how family caregivers experienced the COVID-19 pandemic both personally and around the care they provide; 3) caregivers’ use of and attitudes toward technology to support the care they provide; and 4) what caregivers identify as their key unmet needs. The session will include a facilitated discussion around the intersection of COVID-19 with caregivers’ technology use, experience of caregiving, and future needs, as well as to identify additional research questions and directions for future research with the MIT AgeLab Caregiver Panel.

Nasopharyngeal Expression of Angiotensin-Converting Enzyme 2 (ACE2) and Transmembrane Serine Protease 2 (TMPRSS2) in Children Compared to Adults Within Family Clusters Exposed to COVID-19

There is accumulating evidence that the lower levels of angiotensin-converting enzyme 2 (ACE2) and transmembrane serine protease 2 (TMPRSS2) in the nasal epithelium of children may be related to a lower incidence of COVID-19 compared to adults. However, no direct evidence is available to support this hypothesis. In this study, we compared the transcript levels of ACE2 and TMPRSS2 in nasopharyngeal swabs (n=207) from children and adult members within COVID-19-exposed families and assessed their association with SARS-CoV-2 infection status. The expression of both genes was higher in adults compared to the children (n=115 adults and 92 children, p<0.05), but was not significantly different between COVID-19 positive and negative patients of all ages or within the same age groups. Using paired data, expression of both genes was significantly higher in COVID-19 positive adults compared to COVID-19 negative children (n=47 pairs; p<0.001) within the same families. ACE2 and TMPRSS2 expression is positively associated [OR:1.16(1.06-1.3) and 1.14(1.04-1.26) for ACE2 and TMPRSS2, respectively, p<0.001)] with SARS-CoV-2 infection status in the sub-group of families with COVID-19 positive adults and COVID-19 negative children, suggesting that children with lower levels of nasal ACE2 and TMPRSS2 are more likely to remain COVID-19 negative despite being exposed to a COVID-19-positive adult family member.

Communication barriers in maternity care - a questionnaire study among migrants to Norway

Background Sub-optimal maternity care among migrants has been reported in a number of European countries. Explanations are multifactorial; however, communication barriers have been suggested as a major factor. Our aim was to explore recent migrant women's reported need for interpreter, actual interpreter use and the understanding of information provided during maternity care in Norway. Methods As part of the multidisciplinary, mixed method MiPreg-project, we applied a quantitative questionnaire, using a modified version of Migrant Friendly Maternity Care Questionnaire. We included recently (≤ 5 years) migrated women born in low or middle-income countries giving birth in urban Oslo, Norway, during 2019. Face-to-face interviews in women's own language of choice were conducted postpartum. Results We included 401 women from 65 countries. The five most frequent languages spoken at home were English, Polish, Arabic, Urdu and Tigrinya. The Norwegian proficiency was low; 23% not at all, 39% with difficulty, 39% good. Two thirds of women would have understood the information during maternity care better in another language. Two out of five felt a need for interpreting services and of these 44% and 81% were not offered interpreter during pregnancy and birth, respectively. The woman's partner or other adult family member interpreted most frequently, followed by professional interpreter and healthcare professionals. The women themselves often felt they understood the information provided; 78% always, 20% sometimes and 2% rarely/never. Increased length of residency and higher education was associated with better understanding, also after adjusting for maternal age and immigrant status. Discussions Several communication barriers exist for recent migrant women, with possible consequences for quality of maternity care. Recommended standards for interpretation services were not followed. To address barriers, increased use of interpreter and multilingual antenatal courses could be effective. Key messages Low language proficiency and use of interpreter may contribute to disparities in maternity care for migrants. The unmet needs for interpretation services must be addressed with appropriate actions.

34 Family Needs of Adult & Pediatric Burn Patients

Introduction Family members play a significant role in recovery of the burn patient (Goyata & Rosi, 2009). A better understanding of their specific needs can greatly influence a burn patient’s rehabilitation and family adaptation during recovery. Prior research has identified family needs of critically ill patients (Hinkle 2009; Kinrade, 2009); few studies have looked at the specific needs in adult versus pediatric burn patients and whether these needs change throughout the course of hospitalization. The purpose of this study is to explore the needs of family members of burn patients to identify similarities and differences between adult and pediatric populations in order to aid nurses in prioritizing care instructions for burn families. Methods This IRB approved descriptive repeated measures study took place in a 12-bed burn center. 64 family members (39 adult; 25 pediatric) of burn patients participated. The 45-item Critical Care Family Needs Inventory (CCFNI) identified family member’s psychosocial needs related to assurance, information, proximity, comfort, & support on admission (ADM) and prior to discharge (DC). Descriptive statistics summarized study participant characteristics. T-test & chi-square techniques determined similarities and differences in adult and pediatric family members’ needs perceptions during the hospital stay. Results Majority of respondents were female (84%) often mother or spouse/significant other; age &lt; 40yrs (96% peds; 64% adults). CCFNI scores were similar in adult vs. peds family members: ADM (3.27 vs 3.37), DC (2.91 vs 3.29). Assurance needs were greatest; self-care needs were least important. Adult family member needs for information, proximity and comfort decreased significantly from ADM to DC (p 0.05) but assurance needs were unchanged. Peds family member needs for assurance, information, proximity and comfort did not change from ADM to DC. Pediatric family needs remained “important to very important” throughout the stay while adult family member needs decreased in importance. Conclusions Identifying needs of family members of burn victims in the Burn ICU allows for early assessment and can aid in developing specific individualized plans for successful transition upon discharge. These findings can help nurses best meet the needs of the family & promote patient & family centered care. Applicability of Research to Practice Findings from this study can help inform the development of approaches to better understand the particular needs of family members and develop strategies to address those needs.

Can an Experience with No Car Use Change Future Mode Choice Behavior?

In order to determine whether an experimentally induced experience has the potential to change future travel mode choice, we recruited 10 families living in a middle-sized city who used a car at least four times a week, and made them stop using the car for one month. Each adult family member kept a travel diary and interviews were conducted prior to the experiment, after one month without a car, and then three months and one year after the experiment ended. The results suggest that the participants’ attitudes towards different transportation modes did not change during the period of the study, but their actual travel behavior did. In this respect, several factors were identified that influence travel mode choice, once the participants are made aware of the decision process and break the habit of car use.

Family Incarceration and Bullying Among Urban African American Adolescents: The Mediating Roles of Exposure to Delinquent Peer Norms, Trauma, and Externalizing Behaviors

The present study examined whether having had an incarcerated adult family member was associated with youth bullying perpetration. The study also examined whether exposure to delinquent peers’ norms, trauma, and externalizing behaviors mediated the link between adult family member’s incarceration and bullying perpetration. The study sample consisted of 638 African American adolescents, aged 13 to 21, in Chicago’s Southside. Major findings indicated that 46.8% of the study participants reported bullying perpetration (i.e., at least 1 to 2 times in the past 30 days). Moreover, an adult family member’s incarceration history was found to be positively associated with having peers who endorsed delinquent norms, trauma, and externalizing behaviors, which were linked to youth’s bullying perpetration. Programs addressing youth bullying need to consider the family dynamics.

Examining the Role of Supportive Family Connection in Violence Exposure Among Male Youth in Urban Environments

Family connection has demonstrated protective effects on violence perpetration, victimization, and witnessing in the general U.S. adolescent population. However, several studies examining the impact of family connection on violence exposure in adolescents living in low-resource urban environments have failed to demonstrate similar protective effects. We interviewed male youth in low-resource neighborhoods in Philadelphia recruited through household random sampling. Adjusted logistic regression was used to test whether a supportive relationship with an adult family member was inversely associated with violence involvement and violence witnessing. In 283 youth participants aged 10 to 24 years, 33% reported high violence involvement, 30% reported high violence witnessing, and 17% reported both. Youth who identified at least one supportive adult family member were significantly less likely to report violence involvement (odds ratio [OR] = 0.35; 95% confidence interval [CI] = [0.18, 0.69]) and violence witnessing (OR = 0.46; 95% CI = [0.24, 0.88]). Youth with two supportive parents, and those with supportive mothers only, also demonstrated significant inverse associations with violence involvement. Supportive parental relationships were inversely but not significantly related to witnessing violence. The findings suggest that supportive parental relationships may not prevent youth in low-resource neighborhoods from witnessing violence but may help prevent direct violence involvement. Next studies should be designed such that the mechanisms that confer protection can be identified, and should identify opportunities to bolster family connection that may reduce adolescent violence involvement among youth in low-resource urban environments.

Lesbian, Gay, and Bisexual Adults: Childhood Gender Nonconformity, Childhood Trauma, and Sexual Victimization

The present study examined whether the relationship between childhood gender nonconformity and sexual victimization in adulthood among lesbian, gay, and bisexual (LGB) same-sex attracted men and women is mediated by experiences with childhood trauma experiences by an adult family member. Data are based on a survey among same-sex attracted individuals ( N = 2,352; 1,396 men and 956 women; Mage= 44.97) recruited from an online research panel. Participants completed an online questionnaire consisting of existing scales. Sixteen percent of the participants reported that they had experienced sexual victimization as an adult. There were gender differences: Men reported less childhood gender nonconformity and women more often reported experiences with childhood trauma by an adult family member and sexual victimization as an adult. Bootstrapped mediation analysis and follow-up moderated mediation analyses showed that childhood trauma significantly mediated the relation between childhood gender nonconformity and experiences of sexual victimization for men but not for women. In other words, for men higher levels of childhood gender nonconformity predicted experiences with childhood trauma by an adult family member, which in turn predicted the higher prevalence of sexual victimization. Implementations of these findings are that interventions aimed at increasing the social acceptance of gender nonconformity might also lower the levels of childhood trauma and sexual victimization among gay and bisexual men. Professionals working with children (and especially with boys) should be aware of the impact of gender nonconformity on childhood trauma and experiences of sexual victimization later in life.