Family Participation Research Articles

Caring for hearts and minds: a quality improvement approach to individualized developmental care in the cardiac intensive care unit.

Infants with congenital heart disease (CHD) are at high risk for developmental differences which can be explained by the cumulative effect of medical complications along with sequelae related to the hospital and environmental challenges. The intervention of individualized developmental care (IDC) minimizes the mismatch between the fragile newborn brain's expectations and the experiences of stress and pain inherent in the intensive care unit (ICU) environment. A multidisciplinary group of experts was assembled to implement quality improvement (QI) to increase the amount of IDC provided, using the Newborn Individualized Developmental Care and Assessment Program (NIDCAP), to newborn infants in the cardiac ICU. A Key Driver Diagram was created, PDSA cycles were implemented, baseline and ongoing measurements of IDC were collected, and interventions were provided. We collected 357 NIDCAP audits of bedside IDC. Improvement over time was noted in the amount of IDC including use of appropriate lighting, sound management, and developmentally supportive infant bedding and clothing, as well as in promoting self-regulation, therapeutic positioning, and caregiving facilitation. The area of family participation and holding of infants in the CICU was the hardest to support change over time, especially with the most ill infants. Infants with increased medical complexity were less likely to receive IDC. This multidisciplinary, evidence-based QI intervention demonstrated that the implementation of IDC in the NIDCAP model improved over time using bedside auditing of IDC.

Factors influencing the development and implementation of pediatrics in family-centered care model: A scoping review

Introduction: Family-Centered Care (FCC) in neonatal healthcare emphasizes collaborative efforts between medical staff and families. This approach, rooted in mutual respect and active family participation, aims to enhance infant care outcomes. However, understanding the underlying forces behind FCC interventions remains challenging due to the diverse methods employed in healthcare practices. Methods: We conducted a scoping review in June 2023. We searched Embase, Medline, CINAHL, Web of Science, Cochrane Library, Joanna Briggs Institute (JBI), PubMed, and PsycINFO. Inclusion criteria encompassed English language studies on Family-centered care and related factors, without date or geographic restrictions. Results: Fifteen pertinent studies meeting the inclusion criteria were identified. Five pivotal components of modern FCC emerged: effective communication, active patient and family involvement, robust family support systems, organizational considerations, and the nurturing attitude of nurses. Discussion: Family-centered care emerges as a comprehensive healthcare approach focusing on the interdependence of patients, healthcare professionals, and families. By recognizing this interconnection, FCC seeks to ensure the satisfaction and well-being of all stakeholders. Implementing FCC strategies presents challenges, emphasizing the need for continuous exploration and refinement. Conclusion: Embracing family-centered care principles enriches patient-centered healthcare by involving families as active partners in the care process. Acknowledging the integral role of families enhances care quality and contributes to improved patient outcomes. Ongoing research and dialogue are essential for refining FCC models, ensuring successful implementation, and fostering patient-centered healthcare environments.

Family-preschool relationship and family engagement in distance preschool education in the time of COVID-19 in Chile: toward a change of Principals' mentality?

ABSTRACT Chile was one of the OECD member countries where schools stayed closed the longest during the COVID-19 pandemic. This study provides information about the type of relationship constructed between families and preschools and the conditions under which parental involvement occurred in distance learning experiences during the interruption of in-person educational activities due to the COVID-19 pandemic, from the perspective of 83 principals who lead preschools located in urban and rural areas affected by poverty in Chile. Our findings show that the principals viewed the pandemic as an opportunity to raise awareness and improve educators’ knowledge about students’ family contexts, diversify and adapt families’ modes of participation to their knowledge and living conditions, and incorporate them into the pedagogical decisions that distance learning prompted throughout the COVID-19 pandemic. These findings pose questions regarding the sustainability of these new post-pandemic practices; in other words, whether it is sustainable to shift from a collaborative and instrumental logic of family participation to another that is based on recognition and dialogue and that takes into account families’ needs, interests, and possibilities regardless of the economic, digital, and territorial precariousness that characterises their life.

Silencing or silent transmission? An exploratory study on trauma communication in Kurdish refugee families.

Trauma communication in refugee families is increasingly recognized as an important relational dynamic influencing psychosocial well-being, yet studies exploring interactional dynamics and meaning making at play in intra-family trauma communication remain scarce. This article reports on a qualitative study with Kurdish refugee families including parents (N = 10) and children (N = 17) resettled in Belgium, aiming to explore practices on trauma communication within refugee family relationships. In a multiple-phased qualitative design, semi-structured family interviews and participant observation administered in the homes of the participant families are followed by parental interviews involving a tape-assisted recall procedure to investigate observed intergenerational trauma communication and parent-child interactions. Data analysis shows parents and children seldom explicitly talked about the families' lived experiences of trauma. This silence was especially related to parental wishes to avoid their children's future involvement in violence. However, findings also indicate how the intra-family transmission of memories of collective violence occurs in many subtle ways. Four modes of indirect trauma communication could be distinguished: (1) focusing on the repetition of violence in the present; (2) transmission of the collective trauma history; (3) family storytelling; and (4) interaction with meaningful objects of the past. These findings shed light onto the interwoven nature of personal-familial and collective trauma and loss and illuminate the meanings of silence and disclosure in the context of the Kurdish diaspora. In the final section, we discuss our findings and outline its clinical implications for family therapeutic practices in refugee trauma care.

Lifelong learning

Helen Haygarth, Family Hubs Engagement and Participation lead for Durham Children and Young People's Services, shares more about her journey through education and the importance of CPD for staff.

Feasibility and acceptability of a family navigator program to support foster parents of youth with mental health concerns

This pilot study assessed the acceptability and feasibility of the PROviding ACcess To InnoVative &Evidence-Based Intervention (PROACTIVE) Family Navigator Program for foster parents of children with mental health needs. Foster parents (n = 7) participated in four video conference sessions with a family navigator over the course of one month. In this study, family navigators were psychology doctoral students with mental health training. Feasibility and acceptability were measured with post-session surveys completed by family navigators and participants as well as a participant-completed survey following completion of the program. Feasibility and acceptability were both found to be excellent. Foster parents provided very positive satisfaction ratings for all aspects of the program. This pilot study provided preliminary support for the feasibility and acceptability of the PROACTIVE Family Navigator Program. With the experienced gained in this pilot work, we will design a randomized controlled trial with a fully powered sample to evaluate the efficacy of this program on building foster parent capacity to manage their child’s mental health needs.

Assessment of psychological impact and relationships interpersonal in women with malignant breast neoplasia

Introduction Cancer causes an impact in the face of its news, whether due to feelings of anguish, stress and suffering due to the presence of the disease, which can be shared between patients, family members and loved ones. The news regarding the diagnosis generates, in addition to the psychological impact, financial difficulties, as the patient himself can often be responsible for a large part of the family income. Other complications are the difficulties in understanding the disease by the family members and/or the patient, denial of the disease in order to spare the patient from suffering and other loved ones, family conflicts related to the need to adapt to the new routine of daily life that the family should carry out aiming at the well-being of the patient and his treatment.ObjectivesTo evaluate the psychological impact and interpersonal relationships in patients with breast cancer treated in the city of Presidente PrudenteSP by a support association.MethodsThis is an observational, quantitative, analytical and cross-sectional study, in which 200 patients with malignant breast cancer will be invited.Results The sociodemographic results found were: 62.5% white women, 65.6% aged between 45-65 years, 56.3% married, 46.9% have completed higher education, 56.3% had no family history of cancer, predominance of stages II, III and IV when discovered, 93.5% did not drink, 84.4% did not smoke. On the anxiety scale, 53.1% and 43.8% report getting tired easily and feeling like crying, respectively. On the social adequacy scale, 72.5% continued working only with some limitation during treatment, despite this, 41.4% had minor financial difficulties, 34.5% had difficulties expressing feelings with family members, 40.7% had a relationship well with family members with small arguments and finally 34.8% felt affection for the partner all the time, despite this 36.4% did not have sexual intercourse with them in the last month.ConclusionsIt was concluded, therefore, that when a family member gets sick, they all feel impacted, and each family will deal with the experience in a particular way, therefore, it is worth highlighting the encouragement of family participation in therapy sessions.Disclosure of InterestNone Declared

The Impact of the Current Crisis on Community’s Subjective State. Directions for Rebuilding Individual Wellbeing in the Post-Crisis Period

The choice of a lifestyle was and will remain an important part of the way in which we organise our life, certainly in the given socio-economic and cultural conditions. Lifestyle is built in agreement with the wish of each and any of us to achieve satisfaction with life, or in philosophical language, happiness. The concept of subjective wellbeing is a fundamental one in the quality-of-life paradigm. The main indicator of the subjective state is satisfaction with life. Global satisfaction with life is the outcome of the degree of fulfillment of the individual as general average of all fields of life. In this indicator are included important human benefits, results of economic growth in relationship with the wishes and aspirations to happiness and welfare. They express the permanent orientation of the individual towards self-development/self-construction. In fact, satisfaction with life, as subjective state of individual wellbeing depends on both economic personal welfare (living standard, income, employment, financial situation) and on the state of society’s organization and governance quality, family situation, type of interpersonal and neighborship relations, social participation, etc. The lifestyle is also a key-factor here. Sectoral indicators of satisfaction with life cover the main spheres of human existence (family, profession, work, free time, safety, civic and political participation, personal development, interpersonal relationships, neighborship and friendship relationships, etc.). Subjective wellbeing or “subjective/perceived quality of life” is a critical structural component of the global state of wellbeing. It is the human filter of the objective living conditions. The subjective quality of life is not just the summation of the quality of life’s components, but more than that, the synthesis of its results: the state of human balance, tranquility, wellness. And, the result might allow accessing happiness, the perpetual aspiration of the human. By means of the subjective indicators for satisfaction with life, happiness benefits of ways for precise measurement and analysis. The concept of happiness is a key-concept of all philosophical systems, but it entered by operational forms also in socio-humane, medical and economic sciences, etc.

Lifelong learning

Helen Haygarth, Family Hubs Engagement and Participation lead for Durham Children and Young People's Services, shares more about her journey through education and the importance of CPD for staff.

A mixed methods evaluation of family-driven care implementation in juvenile justice agencies in Georgia

Background Improving family engagement in juvenile justice (JJ) system behavioral health services is a high priority for JJ systems, reform organizations, and family advocacy groups across the United States. Family-driven care (FDC) is a family engagement framework used by youth-serving systems to elevate family voice and decision-making power at all levels of the organization. Key domains of a family-driven system of care include: 1) identifying and involving families in all processes, 2) informing families with accurate, understandable, and transparent information, 3) collaborating with families to make decisions and plan treatments, 4) responding to family diversity and inclusion, 5) partnering with families to make organizational decisions and policy changes, 6) providing opportunities for family peer support, 7) providing logistical support to help families overcome barriers to participation, and 8) addressing family health and functioning. FDC enhances family participation, empowerment, and decision-making power in youth services; ultimately, improving youth and family behavioral health outcomes, enhancing family-child connectedness, and reducing youth recidivism in the JJ setting.MethodsWe evaluated staff-perceived adoption of the eight domains of FDC across detention and community services agencies in the state of Georgia. We collected mixed methods data involving surveys and in-depth qualitative interviews with JJ system administrators, staff, and practitioners between November 2021- July 2022. In total, 140 individuals from 61 unique JJ agencies participated in surveys; and 16 JJ key informants participated in qualitative interviews.ResultsFDC domains with the highest perceived adoption across agencies included identifying and involving families, informing families, collaborative decision-making and treatment planning, and family diversity and inclusion. Other domains that had mixed or lower perceived adoption included involving families in organizational feedback and policy making, family peer support, logistical support, and family health and functioning. Adoption of FDC domains differed across staff and organizational characteristics.ConclusionsFindings from this mixed methods assessment will inform strategic planning for the scale-up of FDC strategies across JJ agencies in the state, and serve as a template for assessing strengths and weaknesses in the application of family engagement practices in systems nationally.

Specialized Educational Assistance (AEE) from the perspective of inclusive education

This article addresses the role of Specialized Educational Assistance (SEA) within the context of inclusive education in Brazil. Since participating in the World Conference on Special Educational Needs in 1994, the country committed to ensuring access to all children to elementary education by 2015, promoting inclusive education that considers the different learning needs of students, including those with disabilities. SEA is a fundamental strategy provided for by the National Policy on Special Education in the perspective of inclusive education, offering support and resources to minimize the difficulties faced by students with disabilities. This article discusses relevant legislation, including Decree No. 7,611/2011, which establishes guidelines for special education, highlighting the importance of integrating SEA into the school's pedagogical proposal and involving family participation. Additionally, it is emphasized that SEA is not intended to replace regular education but to complement it, offering services adapted to the individual needs of students.

FAMILY’S VIEW REGARDING THE DECISION TO BE A CORNEA DONOR: A PHENOMENOLOGICAL STUDY

Introduction and Objective: Family has an important role in the corneal donor process. Corneal extraction can be done when a potential donor dies, so it requires family involvement and support. The purpose of this study is to explore the family's view on the decision to be a cornea donor so that we can obtain a deep understanding on this issue.
 Methods: Phenomenological studies were conducted in Yogyakarta, Indonesia on families of prospective cornea donors (n=6) and registered cornea donor candidates (n=6). Data were collected using in-depth interviews and study documents. Data were analyzed using the Colaizzi’s method.
 Results: Family participants' knowledge and understanding of the urgency and procedure of corneal donors is the main point that constructs their view of corneal donors. Most family participants consider being corneal donors a good thing to do. All participants expressed their willingness to carry out the will of prospective donors, but there was no guarantee they would do so. Fifty percent of participants’ families are also interested in becoming corneal donors in consideration of religious organizations, educational background, and experience participating in activities with the Eye Bank and the donors.
 Conclusion: Families have an important role in the corneal donor process because they will carry out the will of prospective donors and serve as liaisons for the Eye Bank. Family involvement in the promotion of the cornea donor program is needed.

Readiness for hospital discharge and its association with post-discharge outcomes among oesophageal cancer patients after oesophagectomy: A prospective observational study.

To examine the level and influencing factors of discharge readiness among patients with oesophageal cancer following oesophagectomy and to explore its association with post-discharge outcomes (post-discharge coping difficulty and unplanned readmission). Oesophageal cancer is common and usually treated via oesophagectomy in China. The assessment of patient's discharge readiness gradually attracts attention as patients tend to be discharged more quickly. Prospective observational study. The STROBE statement was followed. In total, 154 participants with oesophageal cancer after oesophagectomy were recruited in a tertiary cancer centre in Southern China from July 2019 to January 2020. The participants completed a demographic and disease-related questionnaire, the Quality of Discharge Teaching Scale and Readiness for Hospital Discharge Scale before discharge. Post-discharge outcomes were investigated on the 21st day (post-discharge coping difficulty) and 30th day (unplanned readmission) after discharge separately. Multiple linear regressions were used for statistical analysis. The mean scores of discharge readiness and quality of discharge teaching were (154.02 ± 31.58) and (138.20 ± 24.20) respectively. The quality of discharge teaching, self-care ability, dysphagia and primary caregiver mainly influenced patient's discharge readiness and explained 63.0% of the variance. The low discharge readiness could predict more risk of post-discharge coping difficulty (r = -0.729, p < 0.01) and unplanned readmission (t = -2.721, p < 0.01). Discharge readiness among patients with oesophageal cancer following oesophagectomy is influenced by various factors, especially the quality of discharge teaching. A high discharge readiness corresponds to good post-discharge outcomes. Healthcare professionals should improve the discharge readiness by constructing high-quality discharge teaching, cultivating patients' self-care ability, mobilizing family participation and alleviating dysphagia to decrease adverse post-discharge outcomes among patients with oesophageal cancer. Patients with oesophageal cancer after oesophagectomy who met the inclusion criteria were recruited.

The small steps that lead to big impact: translating therapeutics from idea to reality for the CDKL5 deficiency disorder community.

Despite the unmet needs of patients living with cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) and the challenges facing a rare population with small patient numbers, now is a time of unprecedented opportunities to turn scientific breakthroughs into safe and effective treatments for families of CDD patients. New data collected for over a decade and an evolution in genetics technologies have resulted in transformational new treatments currently in development for CDD. This progress is in great part due to the patient advocacy efforts early on to drive development of stakeholder research tools necessary to de-risk industry entry into the CDD space, family participation in longitudinal natural history studies, and a robust caregiver-reported database. Cumulatively, these efforts offered new insights into CDD, specifically patterns in disease progression, helped identify the most burdensome symptoms to patients and caregivers, improved clinical trial design, and reduced financial barriers for therapeutic development for potential industry partners. This paper documents the growth of a small patient community through relationship building and collaboration. The International Foundation for CDKL5 Research is mindful of ongoing challenges namely the long research timelines, high development and production costs, and inequitable access to approved therapies. Therefore, sustaining strong early resources while recognizing opportunities that engagement, advocacy, and funding can accelerate progress remains at the heart of the agile foundation strategy.

Development and initial validation of a family activation measure for acute care.

Activation of a family member refers to their desire, knowledge, confidence, and skills that can inform engagement in healthcare. Family activation combined with opportunity can lead to engagement in care. No tool currently exists to measure family activation in acute care. Therefore, we aimed to develop and validate a tool to measure family activation in acute care. An interdisciplinary team of content experts developed the FAMily Activation Measure (FAM-Activate) through an iterative process. The FAM-Activate tool is a 4-item questionnaire with 5 Likert-type response options (ranging from strongly agree to strongly disagree). Scale scores are converted to a 0-100 point scoring range so that higher FAM-Activate scores indicate increased family activation. An overall FAM-Activate score (range 0-100) is calculated by adding the scores for each item and dividing by 4. We conducted reliability and predictive validity assessments to validate the instrument by administering the FAM-Activate tool to family members of patients in an acute cardiac unit at a tertiary care hospital. We obtained preliminary estimates of family engagement and satisfaction with care. We surveyed 124 family participants (age 54.1±14.4; 73% women; 34% non-white). Participants were predominantly the adult child (38%) or spouse/partner (36%) of patients. The mean FAM-Activate score during hospitalization was 84.1±16.1. FAM-Activate had acceptable internal consistency (Cronbach's a = 0.74) and showed test-retest responsiveness. FAM-Activate was moderately correlated with engagement behavior (Pearson's correlation r = 0.47, P <0.0001). The FAM-Activate score was an independent predictor of family satisfaction, after adjusting for age, gender, relationship, and living status. The FAM-Activate tool was reliable and had predictive validity in the acute cardiac population. Further research is needed to explore whether improving family activation can lead to improved family engagement in care.

Building resilience among families supporting relatives with ABI in rural NSW: testing the feasibility of telephone delivery of Strength2Strength program

ABSTRACT Background Strength2Strength (S2S) is a group psychoeducational program aiming to build resilience among families supporting relatives after traumatic injury. Objective To test the feasibility, acceptability and outcomes of teleconference delivery of a 5 hour S2S program in rural New South Wales. Methods A mixed methods design investigated the (i) convenience of telephone-based delivery; and (ii) acceptability of the program material (purpose-designed survey and the Narrative Evaluation of Intervention Interview). Program efficacy was measured with the Resilience Scale (RS) and Connor-Davidson Resilience Scale (CD-RISC); the Positive and Negative Affect Scale (PANAS); Depression, Anxiety and Stress Scale – 21 (DASS-21); Carer Assessment of Managing Index (CAMI); and Caregiver Burden Scale (CBS). Participant outcome data were collected at baseline, post program and 3 months follow-up. Results 11 participants supporting adult relatives with severe brain injury completed the program. All participants and facilitators commented positively about the cost, ease of use and quality of the teleconference facility. Statistically significant gains were found between pre-program and follow-up scores on the RS, CD-RISC, PANAS-Positive, and CAMI, with statistically significant reductions found on the DASS-21 Depression Scale and CBS scores. Conclusion The study provides preliminary evidence for the efficacy of telephone–based delivery of S2S to family participants.

A qualitative exploration of the health needs and goals of urban women to inform the tailoring and adaptation of Strong Hearts Healthy Communities: a community-based cardiovascular disease prevention intervention

BackgroundIn the United States, cardiovascular diseases (CVD) are the leading cause of death and disability in women. CVD-modifiable risk factors, including poor diet quality and inadequate physical activity, can be addressed through evidence-based interventions (EBIs). Strong Hearts Healthy Communities (SHHC) is an EBI that has demonstrated effectiveness in reducing CVD risk and improving health outcomes among rural white women. The aims of this study were to understand the general health, diet, and physical activity-related needs and goals of women living in an urban community, to inform the tailoring and adaptation of the SHHC EBI to an urban setting and more diverse population.MethodsFocus groups (FGs) were conducted with African American/Black and Hispanic/Latinx women in the Dallas metropolitan area who had a BMI ≥ 25 kg/m2 and engaged in ≤ 150 min per week of moderate physical activity. The data were coded using a team-based, deductive, and thematic analysis approach, that included multiple coders and in-depth discussions.ResultsFour FGs with a total of 18 participants (79% Black and 21% Latinx) were conducted, and three themes were developed: (1) participants had adequate knowledge and positive attitudes towards healthy living but faced many barriers to practicing healthy behaviors; (2) culturally-based beliefs and community practices exerted a strong influence on behaviors related to food and stress, revealing barriers to healthy eating and generational differences in stress and stress management; (3) participants desired a more individualized approach to nutrition and physical activity interventions that included familiar and enjoyable activities and social support centered around shared health goals.ConclusionsThe SHHC intervention and similar health programs for Black/African American and Hispanic/Latinx women in urban settings should emphasize individualized nutrition and practical skills for healthy eating with accessible, familiar, and enjoyable exercises. Additionally, stress management strategies should be culturally and generationally sensitive and social support, whether through family, friends, or other program participants, should be based on shared health goals.

Changes in Digital Speech Measures in Asymptomatic Carriers of Pathogenic Variants Associated With Frontotemporal Degeneration.

Clinical trials developing therapeutics for frontotemporal degeneration (FTD) focus on pathogenic variant carriers at preclinical stages. Objective, quantitative clinical assessment tools are needed to track stability and delayed disease onset. Natural speech can serve as an accessible, cost-effective assessment tool. We aimed to identify early changes in the natural speech of FTD pathogenic variant carriers before they become symptomatic. In this cohort study, speech samples of picture descriptions were collected longitudinally from healthy participants in observational studies at the University of Pennsylvania and Columbia University between 2007 and 2020. Participants were asymptomatic but at risk for familial FTD. Status as "carrier" or "noncarrier" was based on screening for known pathogenic variants in the participant's family. Thirty previously validated digital speech measures derived from automatic speech processing pipelines were selected a priori based on previous studies in patients with FTD and compared between asymptomatic carriers and noncarriers cross-sectionally and longitudinally. A total of 105 participants, all asymptomatic, included 41 carriers: 12 men [30%], mean age 43 ± 13 years; education, 16 ± 2 years; MMSE 29 ± 1; and 64 noncarriers: 27 men [42%]; mean age, 48 ± 14 years; education, 15 ± 3 years; MMSE 29 ± 1. We identified 4 speech measures that differed between carriers and noncarriers at baseline: mean speech segment duration (mean difference -0.28 seconds, 95% CI -0.55 to -0.02, p = 0.04); word frequency (mean difference 0.07, 95% CI 0.008-0.14, p = 0.03); word ambiguity (mean difference 0.02, 95% CI 0.0008-0.05, p = 0.04); and interjection count per 100 words (mean difference 0.33, 95% CI 0.07-0.59, p = 0.01). Three speech measures deteriorated over time in carriers only: particle count per 100 words per month (β = -0.02, 95% CI -0.03 to -0.004, p = 0.009); total narrative production time in seconds per month (β = -0.24, 95% CI -0.37 to -0.12, p < 0.001); and total number of words per month (β = -0.48, 95% CI -0.78 to -0.19, p = 0.002) including in 3 carriers who later converted to symptomatic disease. Using automatic processing pipelines, we identified early changes in the natural speech of FTD pathogenic variant carriers in the presymptomatic stage. These findings highlight the potential utility of natural speech as a digital clinical outcome assessment tool in FTD, where objective and quantifiable measures for abnormal behavior and language are lacking.

Avocational exposure associations with ALS risk, survival, and phenotype: A Michigan-based case-control study

IntroductionEnvironmental exposures strongly influence ALS risk and identification is needed to reduce ALS burden. Participation in hobbies and exercise may alter ALS risk and phenotype, warranting an assessment to understand their contribution to the ALS exposome. MethodsParticipants with ALS and healthy controls were recruited from University of Michigan and self-completed a survey to ascertain hobbies, exercise, and avocational exposures. Exposure variables were associated with ALS risk, survival, onset segment, and onset age. ResultsALS (n = 400) and control (n = 287) participants self-reported avocational activities. Cases were slightly older (median age 63.0 vs. 61.1 years, p = 0.019) and had a lower educational attainment (p < 0.001) compared to controls; otherwise, demographics were well balanced. Risks associating with ALS after multiple comparison correction included golfing (odds ratio (OR) 3.48, padjusted = 0.004), recreational dancing (OR 2.00, padjusted = 0.040), performing gardening or yard work (OR 1.71, padjusted = 0.040) five years prior to ALS and personal (OR 1.76, padjusted = 0.047) or family (OR 2.21, padjusted = 0.040) participation in woodworking, and personal participation in hunting and shooting (OR 1.89, padjusted = 0.040). No exposures associated with ALS survival and onset. Those reporting swimming (3.86 years, padjusted = 0.016) and weightlifting (3.83 years, padjusted = 0.020) exercise 5 years prior to ALS onset had an earlier onset age. DiscussionThe identified exposures in this study may represent important modifiable ALS factors that influence ALS phenotype. Thus, exposures related to hobbies and exercise should be captured in studies examining the ALS exposome.

In Solidarity: Development, Implementation, and Evaluation of a Family Engagement and Home Learning Program During the COVID-19 Pandemic

The COVID-19 pandemic caused serious social disruptions and posed significant challenges to all families, especially immigrant families. Immigrant families who spoke languages other than English and who had young bilingual children faced numerous barriers as they struggled to navigate remote learning with their children without adequate language and technological support. The need to design action plans to mitigate the negative educational impact of the pandemic on immigrant families with young bilingual children was urgent. To address the immediate needs of immigrant families during the first year of the pandemic, this transformative mixed-methods study presents a family engagement and home learning program called the Home Connection. This program was collaboratively designed and implemented to support 20 immigrant families with 42 young bilingual children from the Metro and Greater Boston Areas. Focusing on the development, implementation, and evaluation of the Home Connection program, findings from this study demonstrate how the family participants actively engaged with and positively evaluated the program. These findings also suggest that family and community engagement play a crucial role in creating a more sustainable support system for immigrant families as well as equitable learning experiences for young bilingual children during and after the pandemic.