key: cord-0742382-fkcpcq4z authors: Steinman, Lesley; Parrish, Amanda; Mayotte, Caitlin; Bravo, Perla; Torres, Eva; Markova, Mariana; Boddie, Margaret; Lachmeyer, Sue; Montoya, Carol Nohelia; Parker, Libby; Conton-Pelaez, Edrei; Conton-Pelaez, Edrei; Snowden, Mark title: Increasing Social Connectedness for Underserved Older Adults Living with Depression: A Pre-Post Evaluation of PEARLS date: 2020-10-16 journal: Am J Geriatr Psychiatry DOI: 10.1016/j.jagp.2020.10.005 sha: 1ce1f82396f036e1ec9888490645d10132457246 doc_id: 742382 cord_uid: fkcpcq4z OBJECTIVE: To evaluate PEARLS effectiveness for increasing social connectedness among underserved older adults with depression. DESIGN: Multi-site, pre-post single-group evaluation. SETTING: Community-based social service organizations (N=16) in five U.S. states, purposively sampled for maximum variation of participants and providers. PARTICIPANTS: 320 homebound older adults (mean(SD) age 72.9(9.6), 79% female, 44% people of color, 81% low-income, 61% living alone, average four chronic conditions) with clinically significant depression (PHQ-9 mean(SD) 12.7(4.6)). INTERVENTION: 4-6 month home-based depression care management model delivered by trained front-line providers. MEASUREMENTS: Brief validated social connectedness scales: Duke Social Support Index 10-item (DSSI-10), PROMIS-Social Isolation (6-item), UCLA-Loneliness (3-item); sociodemographic and health measures. RESULTS: At baseline, PEARLS participants overall and with >/=1 of the following characteristics were less socially connected: younger (50-64), white, LGBTQ+, not partnered, not caregiving, living alone, financial limitations, chronic conditions, and/or recently hospitalized. Six-months post-PEARLS enrollment, participants significantly increased social interactions and satisfaction with social support (DSSI-10 t[312]=5.2, p<0.001); and reduced perceived isolation (PROMIS t[310]=6.3, p<0.001); and loneliness (UCLA t[301]=3.7, p=0.002), with small to moderate effect sizes (Cohen's d DSSI-10: 0.28, PROMIS-SI: 0.35, UCLA: 0.21). Increased social connectedness was associated with reduced depression. Improvements in social connectedness (except social interactions) persisted during early COVID-19. Being Latino and/or having difficulty paying for basic needs was associated with less improvement in post-PEARLS social connectedness. CONCLUSIONS: PEARLS has potential to improve social connectedness among underserved older adults, though additional supports may be needed for persons facing multiple social determinants of health. Further research is needed to establish causality. Setting: Community-based social service organizations (N=16) in five U.S. states, purposively sampled for maximum variation of participants and providers. Participants: 320 homebound older adults (mean(SD) age 72.9(9.6), 79% female, 44% people of color, 81% low-income, 61% living alone, average four chronic conditions) with clinically significant depression (PHQ-9 mean(SD) 12.7(4.6)). Conclusions: PEARLS has potential to improve social connectedness among underserved older adults, though additional supports may be needed for persons facing multiple social determinants of health. Further research is needed to establish causality. Social isolation and loneliness have emerged as significant health concerns for older adults, increasing their risk of early death, cognitive decline, poor health and well-being,(1) and costs of health care. (2) While often conflated, these are distinct health concerns: Social isolation is an objective measure of social ties and activities, while loneliness is a subjective assessment of the disconnect between perceived and ideal social connections. (3) (4) The overarching term "social connectedness" is now used to encompass the "structural, functional, and qualitative aspects of social relationships," including social isolation and loneliness. (5) Late-life depression is another pressing public health concern that impacts quality of life, function, management of other chronic conditions, and risk of death. (6) Depression and low social connectedness are distinct yet related issues, with each being a risk factor and a consequence of the other. (7) Qualitative aspects of relationships (e.g., lack of social support, absence of confidants) have been significantly associated with depression, whereas quantitative aspects (e.g., living alone, size of social network) show less consistent associations. (8) Isolation and loneliness stemming from role changes in later life-retirement, job loss, full-time caregiving, limited mobility and function-are key risk factors for depression.(9) A recent review (10) found "social isolation/loneliness" was the most common depression symptom not in the Diagnostic Statistical Manual (DSM-V). (11) Low social connectedness among older adults is often described as an emerging public health epidemic, yet little is known about how to effectively treat it. What is known is that older adults who are underserved by health care and other institutions -including Black, Indigenous, and other people of color; those living in poverty, homebound, and/or in rural communities-are at increased risk for both low social connectedness (12) and depression.(13) Therefore, it is essential that interventions be designed and delivered to effectively reach these underserved communities. (14) PEARLS (Program to Encourage Active, Rewarding Lives) is an evidence-based intervention designed to reduce depression among homebound older adults who receive social services and are often underserved by health care systems. (15) Many PEARLS participants report causes of social disconnect common among older adults, including poor health and well-being; life transitions, loss, role changes; and social determinants of health such as ageism, racism, and poor access to resources. Brief, person-centered, home-based, behavioral interventions like PEARLS could improve social connectedness for underserved older adults by enhancing participants' sense of purpose and control, and could be tailored to address different causes for disconnect (e.g. lack of social support or meaningful social interactions). (16) (17) This study evaluates whether PEARLS participants improve social connectedness over time. 1. What is the magnitude of low social connectedness among older adults living with depression who participate in PEARLS? 2. Do PEARLS participants improve their social connectedness after program participation? What sociodemographic and health factors are associated with improvements in social connectedness? This research helps fill current evidence gaps about interventions to improve social connectedness among older adults. Our focus on older adults receiving social services aligns with public health's call to prioritize underserved populations to achieve health for all. (18) We used a single group, multi-site, pre-post evaluation design. We applied PRECIS (Pragmatic-Explanatory Continuum Indicator Summary Model) (19) to gather pragmatic evidence on PEARLS as a social connectedness intervention. This study was determined exempt from UW Institutional Review Board review as activities fell under quality improvement and program evaluation. PEARLS is offered by community-based social service organizations (Area Agencies on Aging, community centers, organizations representing specific cultural groups) to support aging in place among older adults with financial or other limitations. We used maximum variation purposive sampling (20) to select a variety of organizations and providers (e.g., social workers, counselors, community health workers) offering PEARLS in urban and rural contexts to older adults from diverse racial and ethnic backgrounds, with a preference for speaking English or Spanish. We partnered with sixteen PEARLS organizations in five U.S. states (WA,TX,NY,MD,FL). Within each organization, all who enrolled in PEARLS during our study period were invited to participate. PEARLS participants are primarily low-income older adults (age >/= 50) with clinically significant depressive symptoms (Patient Health Questionnaire 9-item depression measure (PHQ-9) (21) who meet DSM criteria for minor or major depression or persistent depressive disorder. (11) Adults with significant cognitive impairment, functionally impairing substance use disorder, or severe mental illness are ineligible for PEARLS. PEARLS was co-created and tested in a community-academic partnership to reach underserved homebound older adults.(15) PEARLS trains front-line providers (e.g., case managers, community health workers) from social service safety-net organizations engaging communities with poor access to traditional clinical care. In eight one-hour home-visits over a four-to-sixmonth period, PEARLS providers ("coaches" or "counselors") meet one-on-one with participants. They help participants build problem-solving skills to gain a sense of control over overwhelming issues in their lives (Problem Solving Treatment (PST)), (22) and plan meaningful and accessible physical, social, and pleasant activities (Behavioral Activation (BA)). (23) Providers also offer psychoeducation (information and support to better understand and cope with depression) and linkages to social and health services when needed. A clinical supervisor (e.g., psychiatrist or other clinician) provides regular oversight and consultation for older adults with complex health needs. Regular clinical supervision provides built-in fidelity assessment, and previous research found consistent fidelity among different provider types (24) . Our recruitment of PEARLS organizations and their recruitment of PEARLS participants occurred on a rolling basis. Organizations collected baseline social connectedness data from participants between January 2018 and September 2019. Our study team collected follow-up data by phone 6 months after PEARLS enrollment (timed to align with program completion) between June 2018 and May 2020. While not optimal to collect data using two modalities (inperson vs. phone; provider vs. researcher), this protocol was designed to collect real-time quality data from underserved communities. The same multi-scale assessment of social connectedness was used at baseline and follow-up. At follow-up our study team also collected sociodemographic, health, and program satisfaction items, and participants received a $20 incentive. Bilingual, bicultural PEARLS providers collected baseline surveys in Spanish when appropriate, and bilingual/bicultural study staff collected Spanish-language follow-up surveys. PEARLS organizations and study staff had a protocol for immediately supporting distressed or suicidal participants, and a geriatric psychiatrist available for consultation. We selected instruments that measure different constructs of social connectedness ( Figure 1 (29): 6-item scale for perceived isolation (being avoided, excluded, detached, disconnected from, or unknown by others) (range . A raw score of 13 is average for U.S. adults with chronic conditions. UCLA-Loneliness (26): 3-item scale (range 3-9) of relational connectedness, social connectedness, and self-perceived isolation; derived from UCLA-20.(30) Recoded scores 1 missing item on the baseline or follow-up DSSI-10 (7:320, 2.2%) and PROMIS-SI (10:320, 3.2%), and >/=1 missing item on the UCLA-Loneliness (19:320, 5.9%) were recoded as missing and not included in analyses using that scale. We did not conduct imputation, given the small proportion of missingness. We used REDCap (33) for data management and Stata 15.1 for analysis. We ran descriptive statistics to summarize sample characteristics including social connectedness. We used paired ttests to statistically test whether there was a change in social connectedness pre-post PEARLS, and Cohen's d effect sizes to evaluate the magnitude of change. We used unadjusted and adjusted regression models to identify factors associated with improvements in social connectedness. Regression results are reported using unstandardized slope estimates (B coefficients and their 95% confidence intervals (CI)), the t-statistic (t), and p-value. Our p-value threshold is 0.05 for statistical significance, recognizing tests of statistical significance should be interpreted cautiously due to potential problems with multiple testing. We used Bonferroni correction to adjust p-values (0.05/3=0.017) for the three paired t-tests and three adjusted regression models. We conducted thematic analyses (34) of open-ended survey items about reasons for recommending PEARLS to describe possible mechanisms by which PEARLS participants improved their social connectedness. Table 1 ). Both groups had similar levels of social connectedness, depression, self-rated health, and past/current mental health treatment at baseline. More post-PEARLS non-respondents had recent hospitalizations and were sedentary at baseline, and fewer non-respondents found it hard to pay for basic needs or were providing caregiving. We did not conduct statistical testing, which is only appropriate for testing hypotheses about group differences. Our final study sample (N=320) includes older populations who are underserved in terms of race/ethnicity, poverty, living alone, caregiving, and health (Table 1) . PEARLS participants' baseline social connectedness is reported in Table 2 . Overall, mean(SD) scale scores suggest lower social interaction and satisfaction with social support (DSSI-10) and higher perceived isolation (PROMIS-SI) than population averages referenced above. The mean(SD) score on the UCLA-Loneliness scale (6.1(2.2)) falls right at the cut off (/=50% decrease between pre-post PHQ-9) and remission (post-PHQ-9 <5) reported greater average improvements in social connectedness (Table 5) . PEARLS participants reported receiving encouragement and social support from their PEARLS providers, and appreciated having someone to talk to about issues they were experiencing. Their provider also connected them to additional services to address food and housing insecurity and to better manage their health. As one participant shared: "The one-on-one personal connection and the feeling that I was an important aspect of her work, that I mattered. We dealt with issues that were current at the time and she shared suggestions that have a continuing impact. She provided support and insight that will last longer than that particular moment." (NY530) PEARLS also helped participants identify and address problems in their lives, providing accountability and motivation to achieve their goals. They appreciated learning skills to overcome challenges they were experiencing, including changing both their approach to social interactions and their feelings about these interactions. For example, one Black caregiver described: "I learned to look within myself to recognize things to change. There was an emphasis on taking care of myself so that I can be a better caregiver for my husband and my daughter. I learned to ask for what I needed from others. That was very difficult for me to ask for help from family and friends." (WA030). Some participants wished the PEARLS program would last longer or sessions would occur more frequently, given the valuable support they received from their provider. This study engaged underserved older adults with depressive symptoms. As a whole, our participants at baseline reported being less socially connected than the general older population. When they started PEARLS, older adults who were younger, white, LGBTQ+, not partnered, living alone, experiencing financial limitations, recently hospitalized, and/or living with chronic conditions were less socially connected than persons who were older, BIPOC, straight, married/partnered, living with others, and/or without financial hardships, recent hospitalizations, or chronic conditions. Many of these less connected older adult groups have been identified by recent literature (3, 12, 16) as priority populations for interventions to improve social connectedness and reduce the negative health impacts of isolation and loneliness. One unexpected finding was caregivers reported being more socially connected at baseline. The burden and stress often experienced by caregivers may be counteracted to some degree by enabling an older adult to tap into a sense of purpose, a supportive caregiving community, and positive cultural values. (35) Overall, PEARLS participants significantly improved on all three social connectedness constructs (social interactions and satisfaction with social support; perceived isolation; loneliness) six months after enrollment, although effect sizes were small to moderate (0.21 -0.35). Participants with lower baseline social connectedness showed smaller improvements post-PEARLS, and participants who improved their depression after PEARLS were also more socially connected after PEARLS. Our findings align with previous research showing associations between social isolation, loneliness, and depression. (7, 8, 36) . Our findings are similar to Choi and colleagues' (26) recent RCT that found similar improvements in social connectedness (DSSI-10, PROMIS-SI) among low-income, homebound older adults participating in BA via video-conferencing. Our lower effect sizes may be because we did not use isolation or loneliness as an eligibility criteria for our study, though our baseline measures suggest our study participants are on average more disconnected than the general older population. Maintaining (not worsening) social connectedness is also an appropriate outcome for older social service recipients so they can independently age in place. However, given the small effect sizes, further research should test adaptations to improve PEARLS performance, such as increasing the program frequency and/or duration, and including social connectedness as one of the prompts when generating the problem list with the participant. After controlling for sociodemographics, health, and baseline social connectedness, participants who identified as Latino and/or who had difficulty paying for basic needs had smaller overall improvements in social connectedness after PEARLS. Existing literature offers possible reasons for these findings. Older Latinos cultural value of familismo may make it harder to be or feel connected if they are away from family social networks (37) . For older persons experiencing poverty, it can be hard to access or prioritize meaningful social connections, or reciprocate social support, when having difficulty meeting housing, food and other basic needs (38) . Our study highlights the importance of assessing multiple constructs of social connectedness. At baseline, while female participants reported more social activities and satisfaction with support than male participants, they also felt more isolated and lonely than males. In other words, being more connected was not the same as feeling more connected. Thus, it is essential that research and practice assess structure, function, and quality of social connections, and tailor interventions accordingly. This study combined the DSSI-10, PROMIS, and UCLA into a 17-item measure; future research will determine whether fewer items can accurately capture social connectedness. There are limitations to these measures, as they do not capture sources of social support which may differ depending on cultural and social norms and values (39, 40) . Future studies should also measure "perceived age," given that loneliness among older adults during COVID-19 is associated with feeling older rather than chronological age. (41) Participants' comments about recommending PEARLS suggest the program can increase social connectedness through known mechanisms for change-improving social skills, enhancing social support, increasing opportunities for social interactions, and addressing maladaptive social cognition. (4, 42) PEARLS also aligns with literature on effective interventions to increase social connectedness among older adults: the program is a) theory-driven, b) designed to reach isolated and/or lonely persons, and engages older adults as c) active participants in understanding the nature of their disconnection, co-creating a personalized approach, and connecting to supports and services. (3, 16) While much of our evaluation was conducted pre-COVID-19, one-quarter of study participants BA skills with support from front-line providers. However, additional supports may be needed for older adults facing multiple, ongoing challenges, such as living in poverty with multiple chronic conditions. One PEARLS partner organization has created support groups for PEARLS graduates to maintain health and well-being including social connectedness, and link to services to address social needs and risk factors. While these in-person groups have moved to videoconferencing in COVID-19 times, it is important we improve access and support to technology given wide disparities faced by underserved older adults populations. (46) This study has several limitations. As a single group evaluation with no comparison group or randomization, we cannot attribute improvements in social connectedness to PEARLS specifically. We do not have social connectedness data for PEARLS participants who did not complete study surveys, so cannot describe the representativeness of our sample or assess potential selection bias. Pre-post survey analysis does not indicate whether improvements in social connectedness after PEARLS were due to PST and BA skill building or due to interactions with the PEARLS provider. With only a post-test, we are unable to evaluate whether social connectedness is maintained after visits from the PEARLS provider have ceased. As a second phase of this study we have conducted participant interviews and a second follow-up wave of surveys (12 months after PEARLS enrollment). We are currently analyzing this data to better understand mechanisms for change and whether changes in social connectedness are sustained. Second, we used different data collectors and modalities for pre-and post-data collection. We assessed accuracy at both time points to ensure scales were performing similarly-while there were slightly more missing items at baseline, other metrics were the same. In addition, PEARLS providers reported that baseline social connectedness data collection assisted them in building rapport with participants, and in partnering with them to create a more tailored and meaningful problem-solving and activity plan. Engaging resource-constrained yet resilient settings such as our social service community partners that reach underserved older communities offers important "reverse innovations" for improving social connectedness; that is, centering our learning about interventions in organizations that innovate to make programs work efficiently and sustainably despite limited resources.(47) While we aimed to conduct a pragmatic study with underserved populations, we acknowledge older adults connected to social services/PEARLS are less disadvantaged than those not connected to services. Further research is needed in partnership with older rural and/or LGBTQ+ communities (only 7% of our study participants identified with each)-both groups are at risk for social disconnectedness and depression. We also recognize the limitations of evaluating an individual-level intervention to address upstream social determinants of health (fundamental causes of health inequities) (48) that create and perpetuate social disconnections for marginalized older adults. Embedding PEARLS within social services that address social needs and risk factors offers one avenue, but multi-level and -sector interventions that impact institutions, environments, policies and culture are also sorely needed for lasting structural and systemic change. Community-clinical linkages between health care systems and social service agencies also offer a continuum of care for older adults and sustainability for PEARLS organizations. In conclusion, PEARLS is a promising program to improve social connectedness among underserved older populations. In collaboration with community-based social service organizations around the United States, we gathered important early evidence about one model for helping older adults be and feel more socially connected in ways that are meaningful and accessible to them. The COVID-19 pandemic and recent reports on the negative health effects of social isolation and loneliness have brought social connectedness into focus for policymakers and health systems. The network of aging and social service providers that engage underserved older adults is well poised to deliver and scale promising interventions like PEARLS to meet this call to action. DSSI-10: Duke Social Support Index (10-item) (range 10-30, higher scores = more social connectedness); PROMIS-SI: PROMIS Social Isolation scale (range 6-30, higher scores = less isolated); UCLA: UCLA Loneliness 3-Item Scale (range 3-9; higher scores = less lonely). M=Mean; PHQ-9 = Patient Health Questionnaire 9-item; SD=Standard Deviation. 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Front Public Health Will there be an epidemic of corollary illnesses linked to a COVID-19-related recession? CC=chronic conditions. CI=Confidence Interval. GED=General Educational Development. LGBTQ+ = Lesbian, Gay, Bisexual, Transgender, Queer or Questioning, and other sexual identities -item) (range 10-30, higher scores = more social connectedness); PROMIS-SI: PROMIS Social Isolation scale (range 6-30, higher scores = less isolated); UCLA: UCLA Loneliness 3-Item Scale (range 3-9 3% Dominican, 30% Other Latino countries in North, Central, and South America, 15% country of origin not specified. b Other Race/Ethnicity includes participants who identified as Asian or American Indian/Alaskan Native -item) (range 10-30, higher scores = more social connectedness) PHQ-9: Patient Health Questionnaire 9-item): range 0-27, higher scores = more depressive symptom severity. PHQ-9 >/= 10 suggest clinically significant depressive symptoms We are grateful to PEARLS participants, providers, and our partner organizations for sharing their time and wisdom. We appreciate the support from the AARP Foundation who has prioritized their grant making on improving social connectedness among older adults living in poverty. Many thanks to Kai Zhang for data collection support, Yael Yanich for manuscript preparation, and Dr. Brian Leroux for statistical consultation and oversight.