Support Group Leaders Research Articles

Communication with Health Personnel and Human Rights: A Perspective from People with Mental Disorders

AbstractMental health care has focused on participation, which, in addition to improving recovery processes, constitutes a tool to defend the human rights of people with mental disorders. For this participation, communication is a fundamental element. The objective of the present research was to analyzed the perception of the human rights and communication with healthcare personnel in care processes, from leaders of mutual aid groups or support groups in various contexts of Colombia. It is expected that the generated information can contribute to the evaluation of the quality of mental health services from a human rights and health participation perspective, in contexts similar to the one being analyzed. A qualitative approach has been used, which takes information from six leaders of support groups for mental health, in four regions of Colombia. Said information was analyzed through a thematic analysis, contrasting with the vision of the researchers and with the current theory. It is found that the subject of communication was made up of categories such as Previous ineffective treatments and Perception of a violation of dignity. Communication barriers are pointed out, such as attitudes of mental health professionals, but the influence that the health system and social and political barriers can have on the same communication is recognized. From the perception of leaders of mental health support groups, it is concluded that it is necessary to improve aspects of communication in health personnel. In addition, clinical mental health care could also be a space for the promotion of human rights.

Association of support group leader experience with Scleroderma Patient-centered Intervention Network Support group Leader EDucation Program outcomes: Secondary analysis of a two-arm parallel partially nested randomized controlled trial

Introduction/Objective: The Scleroderma Patient-centered Intervention Network Support group Leader EDucation Program was found in a randomized controlled trial to substantially improve leader self-efficacy. Whether the program is effective for leaders with different levels of experience, including candidate leaders with no prior experience and leaders with ⩽3 years experience or ⩾4 years experience, is not known. The objective of the present post hoc secondary analysis was to evaluate outcomes by leader experience, age, and education. Methods: The trial was a pragmatic, two-arm partially nested randomized controlled trial with 1:1 allocation to intervention or waitlist control. Eligible participants were existing or candidate support group leaders. The 13-session leader training was delivered in groups of five to six participants weekly via videoconference in 60- to 90-min sessions. The primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were Support Group Leader Self-efficacy Scale scores 3 months post-intervention and emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention. Leaders were classified as having no experience, ⩽3 years experience, or ⩾4 years experience. Results: A total of 148 participants were randomized to intervention (N = 74) or waitlist (N = 74). Compared to leaders with ⩾4 years of experience, Support Group Leader Self-efficacy Scale scores were non-statistically significantly higher post-intervention for leaders with 0–3 years experience and lower for leaders with no experience. The 3 months post-intervention Support Group Leader Self-efficacy Scale scores were significantly lower for leaders without experience and similar for leaders with 0–3 years to those with ⩾4 years experience. There were no differences by experience on other outcomes or by age and education on any outcomes. Conclusion: Support group leader education improved leader self-efficacy but was most effective for leaders with experience prior to initiating the program. Trial Registration: NCT03965780; registered on May 29, 2019.

Barriers and Facilitators to Recruitment of a Multifaceted Population of Opioid Use Disorder Community Stakeholders.

Opioid use disorder (OUD) research is essential to inform evidence-based responses to the OUD crisis in the United States. Individuals with OUD, their caregivers, and support group leaders are historically difficult to recruit for research studies. The purpose of this study was to describe barriers and facilitators in recruitment during the implementation of a qualitative study that sought to explore stigma, barriers, and facilitators to healthcare. Researchers engaged in the original study completed a retrospective reflection of their experience recruiting members of the OUD community. Recruitment data were analyzed thematically, and facilitators and barriers for recruitment were identified. Three key barriers to recruitment were identified: choice of community partners, access to technology, and impractical incentives. One key facilitator to recruitment was identified: being patient yet persistent and flexible. Investigators must design research studies mindful of avoiding societal privilege and cognizant of the lens of the individual living with OUD.

Perception of skin cancer risk and sun protective practices in individuals with vitiligo: a prospective international cross-sectional survey

Many individuals with vitiligo are uncertain about their skin cancer risk, phototherapy risks, and recommended sun protective practices. This study examined the perceived skin cancer risk and sun protective practices among individuals living with vitiligo. A secondary objective was to understand where participants obtain this information. This was a prospective cross-sectional study. An online survey was distributed to vitiligo support group leaders globally who shared the survey with their members. Individuals over the age of 18 and with vitiligo were included. There were 209 survey respondents, the majority were between the ages 35–54 (45.5%, n = 95), female (70.8%, n = 148), White (66.0%, n = 138). Nearly half of respondents believed they were at increased risk of skin cancer because of their vitiligo (45.5%, n = 95) and nearly a quarter (22.5%, n = 47) believed that phototherapy increased their risk of skin cancer. Having vitiligo affected sun protective practices with less than a quarter (24.4%, n = 51) of respondents using sunscreen daily or often prior to their vitiligo diagnosis in comparison to the majority of respondents (60.3%, n = 126) using it after their vitiligo diagnosis. The three most common sources where patients obtained information were the internet and social media (46.4%, n = 97), vitiligo support groups (23.4%, n = 49), and dermatologists (20.6%, n = 43). Despite evidence indicating a decreased risk of skin cancer in individuals with vitiligo and supporting the safety of narrowband ultraviolet B phototherapy, many participants believed they were at an increased risk of skin cancer. Findings were sub-stratified and showed differences in sunscreen usage based on gender, skin color, and percent depigmentation. This study also found nearly half of respondents obtained information related to vitiligo from the internet and social media. The number of participants may limit the generalizability of the findings. Survey questionnaires are also subject to response bias. The findings from this study highlight demographic variations in sunscreen usage which may help guide the development of targeted interventions to improve sun protective behaviors among diverse populations with vitiligo. In addition, this study suggests certain sun protective practices and skin cancer risk perceptions may vary based on extent of depigmentation. Lastly, this study also demonstrates the internet and social media as a popular source for obtaining information, emphasizing the need for dermatologists to leverage various online communication channels to help disseminate accurate information.

Professionally led support groups for people living with advanced or metastatic cancer: a systematic scoping review of effectiveness and factors critical to implementation success within real-world healthcare and community settings.

To examine the effectiveness of professionally led support groups for people with advanced or metastatic cancer, and identify factors critical to implementation success within real-world settings. Databases (MEDLINE; PsychINFO; CINAHL) and grey literature were searched for empirical publications and evaluations. Articles were screened for eligibility and data systematically extracted, charted and summarised using a modified scoping review methodology. Implementation factors were mapped using Proctor's implementation framework and the Consolidated Framework for Implementation Research 2.0. A total of 1691 publications were identified; 19 were eligible for inclusion (8 randomised controlled trials, 7 qualitative studies, 2 cohort studies, 2 mixed methods studies). Most (n=18) studies focused on tumour-specific support groups. Evidence supported professionally led support groups in reducing mood disturbances (n=5), distress (i.e. traumatic stress, depression) (n=4) and pain (n=2). Other benefits included social connectedness (n=6), addressing existential distress (n=5), information and knowledge (n=6), empowerment and sense of control (n=2), relationships with families (n=2) and communication with health professionals (n=2). Thirteen studies identified factors predicting successful adoption, implementation or sustainment, including acceptability (n=12; 63%), feasibility (n=6; 32%) and appropriateness (n=1; 5%). Key determinants of successful implementation included group leaders' skills/experience, mode of operation, travelling distance, group composition and membership and resourcing. Professionally led tumour-specific support groups demonstrate effectiveness in reducing mood disturbances, distress and pain among patients. Successful implementation hinges on factors such as leadership expertise, operational methods and resource allocation. Professionally led support groups may fill an important gap in supportive care for people with advanced or metastatic cancer.

Vulnerability, Preparedness, and Previous Experience of Disasters Among the Population of a High Hazard Region-Rural Southern Sindh, Pakistan.

A cross-sectional, mixed-method study was conducted in Badin, a rural area in southern Sindh, which is considered a high-risk disaster zone, to assess the vulnerability, preparedness, and disaster experiences of the coastal population. A multistage sampling technique was employed to select the villages, study area, and 3 distinct populations (I, II, and III). Family heads of households were recruited for population I, village heads for population II, and community support group leaders from selected clusters for population III. The survey was conducted through face-to-face interviews. The results revealed that the population of rural southern Sindh, Pakistan, is highly vulnerable to disasters and exhibits lower levels of preparedness. The statistics about the vulnerable population may prove helpful in designing policies targeting specific groups to mitigate hazards in the future.

Abstract 239: Effects of the COVID‐19 Pandemic on Stroke Treatment in Australia

Introduction In Australia, stroke is one of the leading causes of mortality, death, and disability (Kitsos et al., 2011; Coory et al. 2002). Although Australia has been known to offer excellent stroke treatment and care services in recent years (Deloitte Access Economics, 2020), the rise of the COVID‐19 pandemic caused a reduction in resource availability and delays in stroke treatment. Therefore, we studied the impact that the COVID‐19 pandemic had on stroke treatment in hospitals all over the country. Methods Initially, we conducted secondary research on stroke treatment in Australia. Using this information, we created a survey inquiring more about the COVID‐19 pandemic’s effect on stroke treatment from the physician's perspective. We also focused on inquiring about the disparities in access to stroke care for urban and rural regions in Australia. We compiled a list of clinical and academic neurologists and subsequently distributed the survey to them. We received a total of 4 survey responses from neurologists and additional supplementary information from 2 other neurologists. We also reached out to leaders of stroke support groups to learn more about stroke rehabilitation services and how the pandemic affected them. Furthermore, we conducted one interview with a support group leader from Melbourne, Victoria. Results Based on the survey results and interview, we believe that the main barrier affecting stroke treatment due to the pandemic was reductions in resource availability (including beds, general anesthesia, etc.). In addition, the hospital admission rate of stroke patients decreased during the initial stages of the pandemic in 2020. Some physicians mentioned that this may have been due to patients' fear of receiving care in hospitals that were prioritizing treatment of COVID‐19 rather than stroke. Survey responses indicated that physicians working in urban hospitals observed minor effects on stroke treatment due to the pandemic. However, urban hospitals, benefiting from Australia's advanced stroke treatment, generally managed to withstand these challenges. Although there may be multiple reasons for this, a major reason one of the neurologists mentioned was a lack of politicization regarding public health precautions, which contributed to the initial stages of the pandemic not being as detrimental to Australia as it was in other parts of the world. Conclusion Overall, the pandemic did not have a major effect on stroke treatment in Australia. Compared to before the pandemic, both stroke cases and stroke treatment numbers remained relatively the same. The most prominent effect was the reduction in resources for patients as well as healthcare workers. Patient concern about healthcare availability increased, and the number of patients reporting stroke concerns decreased. However, overall, because of Australia’s advanced treatment services, the COVID‐19 impact on stroke treatment was not significant. Due to the low impact COVID‐19 had on stroke treatment in Australia, we have shifted our interest to studying how stroke treatment in Australia has changed over the last 5 years to better understand changes that predated and currently exist after COVID‐19.

Stigma‐related barriers to participation in support groups for children: Social workers' experiences and destigmatizing strategies

AbstractIn Sweden, preventive support groups for children exposed to domestic violence, substance abuse or mental illness are provided by local child protection services (CPS). The stigma of parental problems and contact with CPS are barriers to recruiting children. This article investigates how such barriers are experienced and handled by professional support group leaders. The empirical data is drawn from five group interviews with 16 professionals, recruited from a purposive sample of nine local authorities in Sweden. It is found that professionals experience stigma as a barrier to recruiting children, mainly the parents' shame but also their fear of CPS involvement. Professionals describe parents' problems on a ‘scale of shamefulness’, ranging from divorce to domestic violence, and the barriers vary in strength relative to the shamefulness of the problem. Parents are gatekeepers for their children's participation, so destigmatizing and shame‐reducing strategies, whether on the interpersonal, organizational or structural level, are called for to increase children's access. However, strategies targeting parental shame are not without their challenges and risks.

Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial.

Family caregivers play an essential role in supporting the health and well-being of older adults with dementia, a population projected to increase rapidly over the coming decades. Enrolling caregivers of people with dementia (PWD) in research studies is vital to generating the evidence necessary to support broader implementation of efficacious intervention programs in real-world care delivery, but a range of challenges impede recruitment and enrollment of sufficiently large and representative sample sizes. In this article, we characterize the challenges and lessons learned from recruiting caregivers of PWD to participate in a pilot randomized control trial. We utilize Bronfenbrenner's ecological model to categorize the challenges into three levels: individual (i.e., understanding caregivers' time constraints and motivations), community (i.e., reaching underrepresented populations and accessing caregiver support groups) and institutional (i.e., obtaining informed consent and navigating research registries). We found that establishing rapport and maintaining flexibility with participants was crucial for motivating individuals to enroll in our study. Building trust with local communities by collaborating with support group leaders, appointing a co-investigator who is already embedded within a given community, and establishing equitable partnerships with organizations increased recruitment rates. At the institutional level, engaging experts in regulatory affairs and geriatrics may help overcome barriers in obtaining approval from institutional review boards. We also recommend using research registries of individuals who offer their contact information to researchers. The lessons learned from our research-including the challenges and potential solutions to overcome them-may promote more effective and efficient recruitment in future research.

'Some days I am a lunatic that thinks I can moderate': Amalgamating recovery and neo-liberal discourses within accounts of non-drinking among women active in the 'positive sobriety' community on Instagram in the UK.

In recent years, reductions in drinking in the UK and the rise of online 'positive' sobriety communities have been observed, yet peer led support groups such as Alcoholics Anonymous (AA) and neo-liberal discourses of control and responsibility dominate public understandings of (problematic) alcohol use. This paper presents research exploring how women active in the 'positive sobriety' community on Instagram position and construct their non-drinking identities and relationships with alcohol within these overlapping discourses. Semi-structured interviews (n=15) and online content produced by women active in the positive sobriety community on Instagram were analysed using thematic analysis. Women challenged, reproduced and amalgamated AA discourses of addiction, and the broader discourses of neo-liberalism, in ways that positioned (alcohol) consumption, agency, control and individual responsibility as defining features of feminine identity making. Drawing on these discourses, binary understandings of problematic drinking, the identity of the 'alcoholic', and the need to reach 'rock bottom' in the recovery process were rejected and challenged, but at times reproduced. Whilst a broader framing of problematic drinking that situated drinking problems on a spectrum was constructed, abstinence was engaged with and promoted as the most effective way of gaining control and responsibility over drinking in gendered ways, and in establishing an authentic sense of self. This paper contributes to emerging research on online 'positive' sobriety communities, their gendered nature, and the intertwined presence of traditional recovery and neo-liberal discourses in women's accounts. Online sober communities offered alternative spaces of support and allowed for sobriety and sober femininities to be framed more positively than within traditional AA conceptualisations. However, those involved may experience tensions around (a) the need to 'tell' their personal stories of complete abstinence whilst still appealing to those who seek to 'moderate' and (b) the pressure to create and craft an 'authentic' sober self on an online platform that demands a carefully curated self-image and personal 'brand'. Further research should aim to gain more understanding of the role social media plays in "doing" sobriety and non-drinking, how this is done by people of different genders, the intersectional experiences of those participating, and how these communities can be made more equally available and accessible to those who do not consider full abstinence as necessary, whilst still appealing to those that do.

Perceived stigma, barriers, and facilitators experienced by members of the opioid use disorder community when seeking healthcare.

Healthcare professionals, particularly nurses, have negative attitudes towards individuals with opioid use disorder (OUD) and these attitudes can contribute to suboptimal care. The aim of this study was to identify stigma, barriers and facilitators experienced by members of the OUD community when interacting with the healthcare system. A qualitative exploratory design used semi-structured focus group interviews to address the study aim. Following IRB approval, purposive sampling was used to recruit participants with a history of OUD, family caregivers of individuals with OUD, and support group leaders from regional recovery groups to provide a broad perspective of stigmatizing issues and barriers to care. Focus group discussions were conducted, and video recorded using web-based conferencing software. Transcripts from the focus groups and field notes were analyzed and coded into themes. Both structural and social determinants of health were identified by participants as stigmatizing and/or barriers to care. Thematic content analysis resulted in eight themes: stigmatizing language, being labeled, inequitable care, OUD as a chronic illness, insurance barriers, stigma associated with medications for OUD (MOUD), community resources, and nursing knowledge and care. Members of the OUD community are challenged by both internal and external stigma when seeking healthcare. Stigma negatively affects public support for allocation of resources to treat OUD. Interventions aimed at reducing stigma are critical to support effective OUD treatment and prevent barriers to OUD care. Understanding the complex relationships between stigma and structural determinants of health will allow nursing science to develop educational interventions that provide the next generation of nurses with the knowledge, skills, and attitudes needed to advance health equity for individuals with OUD.

Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial

BackgroundMore people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively by researchers, peer support group leaders, and patient organization leaders, compared to waitlist control, on peer leader self-efficacy among scleroderma support group leaders.MethodsThe trial was a pragmatic, two-arm partially nested randomised controlled trial with 1:1 allocation into intervention or waitlist control. Eligible participants were existing or candidate peer support group leaders affiliated with a scleroderma patient organization. Leader training was delivered in groups of 5–6 participants weekly for 13 weeks in 60–90 min sessions via the GoToMeeting® videoconferencing platform. The program included 12 general leader training modules and one module specific to scleroderma. Primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were leader self-efficacy 3 months post-intervention; emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention; and program satisfaction among intervention participants post-intervention.ResultsOne hundred forty-eight participants were randomised to intervention (N = 74) or waitlist (N = 74). Primary outcome data were provided by 146 (99%) participants. Mean number of sessions attended was 11.4 (standard deviation = 2.6). Mean program satisfaction score (CSQ-8) was 30.3 (standard deviation = 3.0; possible range 8–32). Compared to waitlist control, leader self-efficacy was higher post-intervention [SGLSS; 16.7 points, 95% CI 11.0–22.3; standardized mean difference (SMD) 0.84] and 3 months later (15.6 points, 95% CI 10.2–21.0; SMD 0.73); leader volunteer satisfaction was significantly higher at both assessments, emotional distress was lower post-intervention but not 3 months later, and leader burnout was not significantly different at either assessment.ConclusionsPeer support group leader education improved leader self-efficacy substantially. The program could be easily adapted for support group leaders in other rare diseases.Trial registration:NCT03965780; registered on May 29, 2019.

Development and psychometric properties of a brief generic cancer knowledge scale for patients (BCKS-10)

PurposeThis study aims to introduce the development and psychometric properties of a brief generic cancer knowledge scale for patients (BCKS-10) that includes different elements of knowledge and skills (terminology, diagnosis, treatment, prevention, and numeracy). Although cancer knowledge is a central dimension of cancer literacy, most previous studies either investigated cancer knowledge among the general population, or among patients with a specific cancer diagnosis.MethodsQualitative interviews (n = 11) and a quantitative survey (n = 267) among peer support group leaders were conducted to further develop the BCKS-10 after literature screening. n = 500 patients with cancer were recruited across Germany between October 2020 and February 2021. Construct validity, item discrimination and reliability were tested.ResultsANOVA revealed no significant differences of the knowledge score between various cancer sites, a significant positive association with education, and a negative association with migration background by trend supporting construct validity. In terms of item discrimination, the corrected item-total correlation of 8 out of 10 items were above the threshold of 0.3. Cronbach’s alpha of about 0.68 revealed an acceptable internal consistency as the tool is brief and consists of different dimensions.ConclusionOverall, the findings show that the BCKS-10 is a suitable tool to briefly assess cancer knowledge among patients independent of cancer site. However, further surveys have to be conducted to validate the psychometric properties and enhance the BCKS-10.

Sustainability capacity of a vegetable gardening intervention for cancer survivors

BackgroundHealth behavior interventions, especially those that promote improved diet and physical activity, are increasingly directed toward cancer survivors given their burgeoning numbers and high risk for comorbidity and functional decline. However, for health behavior interventions to achieve maximal public health impact, sustainability at both the individual and organizational levels is crucial. The current study aimed to assess the individual and organizational sustainability of the Harvest for Health mentored vegetable gardening intervention among cancer survivors.MethodsTelephone surveys were conducted among 100 cancer survivors (mean age 63 years; primarily breast cancer) completing one-of-two Harvest for Health feasibility trials. Surveys ascertained whether participants continued gardening, and if so, whether they had expanded their gardens. Additionally, surveys were emailed to 23 stakeholders (Cooperative Extension county agents, cancer support group leaders, and healthcare representatives) who were asked to rate the intervention’s ability to generate sustained service and produce benefits over time using the eight-domain Program Sustainability Assessment Tool (PSAT).ResultsThe survey among cancer survivors (91.9% response rate) indicated that 85.7% continued gardening throughout the 12 months following intervention completion; 47.3% expanded their gardens beyond the space of the original intervention. Moreover, 5.5% of cancer survivors enrolled in the certification program to become Extension Master Gardeners. The survey among stakeholders generated a similar response rate (i.e., 91.3%) and favorable scores. Of the possible maximum of 7 points on the PSAT, the gardening intervention’s “Overall Capacity for Sustainability” scored 5.7 (81.4% of the maximum score), with subscales for “Funding Stability” scoring the lowest though still favorably (5.0) and “Program Evaluation” scoring the highest (6.3).ConclusionsData support the sustainability capacity of the Harvest for Health vegetable gardening intervention for cancer survivors. Indeed, few interventions have proven as durable in terms of individual sustainability. Furthermore, Harvest for Health’s overall organizational score of 5.7 on the PSAT is considered strong when compared to a previous review of over 250 programs, where the mean overall organizational PSAT score was 4.84. Thus, solutions for long-term funding are currently being explored to support this strong, holistic program that is directed toward this vulnerable and growing population.Trial registrationClinicalTrials.gov Identifier: NCT02150148

Outsourcing Turnover Analysis at PT Bank Negara Indonesia’s Digital Operational Division

This study aimed to determine the factors causing an increase in turnover of outsourced employees at PT Bank Negara Indonesia’s Digital Operational Division and to find out what policies and strategic steps were taken to reduce this turnover rate. The researcher used qualitative approaches and data were collected through observations, document analysis and interviews with key informants including the Head of the Digital Operations Division, deputy leaders in charge of employees in the Digital Operations Division, leaders of support groups who were responsible for the availability of employees, supporting managers who directly oversaw outsourcing, employment provider companies, and outsourcing personnel who were still working as well as outsourced staff who had left. The research was conducted at PT Bank Negara Indonesia’s Digital Operational Division. It was found that there were intrinsic and extrinsic factors causing the increased turnover of outsourcing personnel. These intrinsic factors included the challenges of the job itself, work progression of promotion/rank, responsibility for the assigned job, recognition of work results, achievement, employee productivity, education, work experience and age. Meanwhile, extrinsic factors included administration and company policies as well as government regulations, supervision, salaries, interpersonal relationships, working conditions, supply and demand for the number of jobs with the availability of labor, attachment to the organization and corporate culture.
 Keywords: outsourcing, turnover

Using the Tools of Today to Advance the Life Course Interventions of Tomorrow.

Using the Tools of Today to Advance the Life Course Interventions of Tomorrow.

Birth, Postpartum, and Home Experiences of Individuals With Lower Extremity Nerve Injury

ObjectiveTo explore birth and at-home postpartum experiences of individuals with lower extremity nerve injury (LENI) related to childbirth. DesignMixed-methods, descriptive, cross-sectional survey with open-ended questions. SettingClosed Facebook support group. ParticipantsTwo hundred-thirty individuals who experienced LENI during childbirth. MeasurementsTwo research team members developed the online LENI survey that incorporated suggestions from LENI support group leaders. We used descriptive statistics, linear regression, and Kaplan–Meier survival curves to summarize the quantitative data and used content analysis for open-ended items. ResultsWe described labor, birth, and postpartum characteristics in our sample, including immediate and long-term LENI symptoms. Falls resulting from LENI were common in the hospital (55.6%) and at home (75.6%). At discharge home, respondents reported low confidence in their ability to care for themselves and their infants as well as high levels of dependence on others. There was an 89.6% prevalence of depression in the first month at home. Approximately 80% of participants rated their degree of healing at 5 years as 80% to 100% healed. Content analysis yielded six themes: (a) Grieving Loss of Current and Future Life; (b) Caregiver Responses That Helped or Hindered; (c) Being in Danger; (d) Experiencing Emotional Turmoil; (e) Dealing With Family, Marital, and Financial Difficulties; and (f) Finding Strength, Overcoming Obstacles, and Experiencing Personal Growth. ConclusionParticipants in our sample reported a very high rate of falls, anxiety, and depression at home. Nurses should recognize LENI symptoms, take action to prevent falls, and offer accurate information and referrals.

Going Into a Community, We Need to Start From Where They’re At: Caregiver and Advocate Perspectives

We recorded and inductively coded an open-ended discussion of jargon surrounding “dementia” with the “Supporting Dementia Caregivers After Death” community advisory board (CAB). CAB-members included current and former caregivers of PLWD due to early- and normal-onset Alzheimer’s, Lewy body, and Parkinson’s, a co-president of the Alzheimer’s Association (ALZ) Young Champions, a dementia trainer/consultant and member of a Catholic church that preserves American Indian spiritual traditions, a senior program manager at ALZ who was entrusted by American Indian reservation elders to provide dementia education, a care partner support group leader, and an Alzheimer’s Ambassador chosen by multiple US senators. Themes identified included differential inclusiveness of terms like “memory loss” versus “dementia”, misuse and misunderstanding of “dementia” versus “Alzheimer’s,” and the difficulty of translating “dementia” into the American Indian Ojibwe (i.e., Anishinaabemowin) language where suggested translations directly translated to “slow memory loss”, “brain deterioration”, “absent mindedness”, or even “craziness”.

"They Make You Feel Less of a Human Being": Understanding and Responding to Milwaukee's Racial Disparity in Infant Mortality.

Black infants die three times as often as white and Hispanic infants before their first birthday in Milwaukee, WI. Prematurity is the major cause of infant mortality, and social determinants of health contribute to this disparity. To understand how socioeconomic factors and racism create barriers to healthy pregnancies and birth outcomes for Black women, and identify practices necessary for overcoming these barriers. Thirteen collaborators (four women, four support group leaders, and five health professionals) were recruited from church support groups, a family medicine residency clinic, and the health department. Data were collected through field observations, six one-on-one interviews, one small group interview, and one focus group. Thematic analysis identified six key themes related to socioeconomic factors and racism in women's and infant health: Public Apathy; Violence and Stress; Discrimination; Mistrust; Spiritual and Social Support; Reproductive Justice. These themes point out failures in health care, social services, and policy initiatives that do not meet women's and infant needs, in addition to some opportunities to implement successful practices. Recommendations are made for policymakers, social services, health systems, and health professionals to implement systemic changes that support Black women and their families. Future applications of this work include implementing and measuring the impact of systems change to benefit Black women and families.

Exploration of Nurse/Social Worker ICU Family Support Group Intervention Satisfying Family Members’ Needs

Background: Family members of intensive care unit (ICU) patients are legitimate recipients of nursing care. There is a lack of interventional nursing strategies providing family support while in ICU. Objective: To demonstrate that a nurse led family support group is tool to fulfill family members’ needs. Methods: A prospective convenience sample of family members volunteering participation in nurse/social worker led support group. To validate the intervention on family members’ needs, The Critical Care Family needs Inventory was distributed to participants in support group. Results: 100 relatives participated in the study; Out of the 45 family needs, 21 needs were statistically significantly fulfilled by participation family support group intervention. The findings demonstrated that support group most significantly affected Support and Assurance categories.