Transition of Intensive Care Unit Patients and Their Families to Home After Acute Hospital Care.

Patients in the intensive care unit (ICU) increasingly are expected to eventually return home after acute hospital care. Yet transitional care for ICU patients and their families is often delayed until the patient is about to be transferred to another location or level of care. Transitions theory is a middle-range nursing theory that aims to provide guidance for safe and effective nursing care and research while an individual experiences a transition. Intensive care unit nurses are well positioned to provide ICU transitional care planning early. This article applies the transitions theory as a theoretical model to guide the study of the transition to home after acute hospital care for ICU patients and their families. This theory application can help ICU nurses provide holistic patient- and family-centered transitional care to achieve optimal outcomes by addressing the predischarge and postdischarge needs of patients and families.

Perinatal loss in Tanzania: Perspectives of maternal-child healthcare providers.

Over 98% of stillbirths and neonatal deaths occur in Low- and Middle-Income Countries, such as Tanzania. Despite the profound burden of perinatal loss in these regions, access to facility or community-based palliative and psychosocial care is poor and understudied. In this study we explore perinatal loss through the lens of front-line healthcare providers, to better understand the knowledge and beliefs that guide their engagement with bereaved families. A Knowledge Attitudes and Practices survey addressing perinatal loss in Tanzania was developed, translated into Swahili, and administered over a 4-month period to healthcare professionals working at the Kilimanjaro Christian Medical Center (KCMC). Results were entered into REDCap and analyzed in R Studio. 74 providers completed the survey. Pediatric providers saw a yearly average of 5 stillbirths and 32.7 neonatal deaths. Obstetric providers saw an average of 11.5 stillbirths and 13.12 neonatal deaths. Most providers would provide resuscitation beginning at 28 weeks gestational age. Respondents estimated that a 50% chance of survival for a newborn occurred at 28 weeks both nationally and at KCMC. Most providers felt that stillbirth and neonatal mortality were not the mother's fault (78.4% and 81.1%). However, nearly half (44.6%) felt that stillbirth reflects negatively on the woman and 62.2% agreed that women are at higher risk of abuse or abandonment after stillbirth. A majority perceived that women wanted hold their child after stillbirth (63.0%) or neonatal death (70.3%). Overall, this study found that providers at KCMC perceived that women are at greater risk of psychosocial or physical harm following perinatal loss. How women can best be supported by both the health system and their community remains unclear. More research on perinatal loss and bereavement in LMICs is needed to inform patient-level and health-systems interventions addressing care gaps unique to resource-limited or non-western settings.

A Hybrid Pragmatic and Factorial Cluster Randomized Controlled Trial for an Anti-racist, Multilevel Intervention to Improve Mental Health Equity in High Schools.

Systemic racism is pervasive in US society and disproportionately limits opportunities for education, work, and health for historically marginalized and minoritized racial and ethnic groups, making it an urgent issue of social justice. Because systemic racism is a social determinant of health prevalent across multiple social and institutional structures, it requires multilevel intervention approaches using effective designs and analytic methods to measure and evaluate outcomes. Racism is a fundamental cause of poor health outcomes, including mental health outcomes; thus, mental health services and programs that address racism and discrimination are key to promoting positive mental health of racial and ethnic minority youth. While multilevel interventions are well-suited for improving outcomes like youth mental health disparities, their evaluation poses unique methodological challenges, requiring specialized design and analytic approaches. There has been limited methodological guidance provided to researchers on how to test multilevel interventions using approaches that balance methodological rigor, practicality, and acceptability across stakeholder groups, especially within communities most affected by systemic racism. This paper addresses this gap by providing an example of how to rigorously evaluate a hypothetical, theoretically based, multilevel intervention promoting mental health equity in three US school systems using an anti-racist approach intervening at the macro- (i.e., school system), meso- (i.e., school), and micro- (i.e., family and student) levels to improve mental health in adolescents. We describe the design, sample size considerations, and analytic methods to comprehensively evaluate its effectiveness while exploring the extent to which the components interact synergistically to improve outcomes. The methodological approach proposed can be adapted to other multilevel interventions that include strategies addressing macro-, meso-, and micro-levels of influence.

Mobile Application-Based Communication Facilitation Platform for Family Members of Critically Ill Patients: A Randomized Clinical Trial.

Importance: Unmet and racially disparate palliative care needs are common in intensive care unit (ICU) settings. Objective: To test the effect of a primary palliative care intervention vs usual care control both overall and by family member race. Design, Setting, and Participants: This cluster randomized clinical trial was conducted at 6 adult medical and surgical ICUs in 2 academic and community hospitals in North Carolina between April 2019 and May 2022 with physician-level randomization and sequential clusters of 2 Black patient-family member dyads and 2 White patient-family member dyads enrolled under each physician. Eligible participants included consecutive patients receiving mechanical ventilation, their family members, and their attending ICU physicians. Data analysis was conducted from June 2022 to May 2023. Intervention: A mobile application (ICUconnect) that displayed family-reported needs over time and provided ICU attending physicians with automated timeline-driven communication advice on how to address individual needs. Main Outcomes and Measures: The primary outcome was change in the family-reported Needs at the End-of-Life Screening Tool (NEST; range 0-130, with higher scores reflecting greater need) score between study days 1 and 3. Secondary outcomes included family-reported quality of communication and symptoms of depression, anxiety, and posttraumatic stress disorder at 3 months. Results: A total of 111 (51% of those approached) family members (mean [SD] age, 51 [15] years; 96 women [86%]; 15 men [14%]; 47 Black family members [42%]; 64 White family members [58%]) and 111 patients (mean [SD] age, 55 [16] years; 66 male patients [59%]; 45 Black patients [41%]; 65 White patients [59%]; 1 American Indian or Alaska Native patient [1%]) were enrolled under 37 physicians randomized to intervention (19 physicians and 55 patient-family member dyads) or control (18 physicians and 56 patient-family member dyads). Compared with control, there was greater improvement in NEST scores among intervention recipients between baseline and both day 3 (estimated mean difference, -6.6 points; 95% CI, -11.9 to -1.3 points; P = .01) and day 7 (estimated mean difference, -5.4 points; 95% CI, -10.7 to 0.0 points; P = .05). There were no treatment group differences at 3 months in psychological distress symptoms. White family members experienced a greater reduction in NEST scores compared with Black family members at day 3 (estimated mean difference, -12.5 points; 95% CI, -18.9 to -6.1 points; P < .001 vs estimated mean difference, -0.3 points; 95% CI, -9.3 to 8.8 points; P = .96) and day 7 (estimated mean difference, -9.5 points; 95% CI, -16.1 to -3.0 points; P = .005 vs estimated mean difference, -1.4 points; 95% CI, -10.7 to 7.8; P = .76). Conclusions and Relevance: In this study of ICU patients and family members, a primary palliative care intervention using a mobile application reduced unmet palliative care needs compared with usual care without an effect on psychological distress symptoms at 3 months; there was a greater intervention effect among White family members compared with Black family members. These findings suggest that a mobile application-based intervention is a promising primary palliative care intervention for ICU clinicians that directly addresses the limited supply of palliative care specialists. Trial Registration: ClinicalTrials.gov Identifier: NCT03506438.

The Concept of Double Protection in the Childhood Cancer Context.

BACKGROUND: The concept of double protection is used to describe communication avoidance used by parents and their child or adolescents with cancer in attempts to protect the other against disease-related stress and emotions, resulting from communication about the cancer, its treatment, and thoughts. This concept has received limited attention in the research literature. OBJECTIVES: The aims of this concept analysis are to (1) explore its defining characteristics, applicability, and utility, (2) spotlight the concept and increase awareness and interest among healthcare providers and researchers, and (3) provide a direction for future interventions to improve parent-child communication in the childhood cancer context. METHODS: Rodgers' Evolutionary Concept Analysis was used, and the findings from a study that explored the communication experience of Korean adolescents with cancer and their parents were integrated. RESULTS: This study explored the attributes, antecedents, consequences, and related terms. The following attributes were extracted: intention to protect, bidirectional, and absence of parent-child communication at a deeper level. CONCLUSION: Clarification of the concept of double protection provides insight into the concept as a barrier to engagement in parent-child communication and supports the significance of double protection in the childhood cancer context. IMPLICATIONS FOR PRACTICE: There is a need for increased awareness of the challenges and dangers inherent in family communication avoidance, double protection. In order to address the issue, developing developmentally appropriate and valid clinical assessment tool and interventions are required. More research on the evidence-based benefits of effective parent-child communication is also required.

Challenges and coping between parents in shared decision-making for children with complex, life-threatening conditions: A qualitative content analysis.

BACKGROUND & PURPOSE: Relatively little is known about the parents' challenges and coping in making decisions for children with complex, life-threatening conditions. Therefore, this secondary analysis aimed to explore the challenges and coping between parents while navigating their decision-making by focusing on their interpersonal relationship. DESIGN & METHOD: Data from 38 interviews with parent couples of 20 infants diagnosed with congenital heart disease or receiving hematopoietic stem cell transplantation (HSCT) were analyzed using a conventional content analysis. RESULTS: Findings revealed the key challenges between parents in decision-making and how they cope with the challenges together as represented by two main themes of "Challenges faced by parents in making decisions together" and "Parents' collaborative coping with the challenges of making shared decisions." DISCUSSION: The majority of challenges that parents face in making decisions were closely related to the nature of the children's complex and life-threatening illness and uncertainty. However, supportive partner helped coping and decision-making, indicating the vital role of spouses in making decisions for their ill child. IMPLICATIONS: Assessing parents' marital relationship, providing enough information to ensure that both parents clearly understand the information, and encouraging parents to openly communicate with each other are recommended. Educating healthcare providers to support parents to partner together in shared decision-making is also required. Last, legislating laws that mandate providing psychological counseling services and developments of community-based interventions to support parental relationship would improve parents' shared decision-making. Further research on enhancing parental relationships in the context of a child's illness is required.

Identification of high-risk symptom cluster burden group among midlife peri-menopausal and post-menopausal women with metabolic syndrome using latent class growth analysis.

BACKGROUND: Midlife peri-menopausal and post-menopausal women with metabolic syndrome experience multiple co-occurring symptoms or symptom clusters, which often result in significant symptom cluster burden. While they are a high-risk symptom burden group, there are no studies that have focused on identifying symptom cluster trajectories in midlife peri-menopausal and post-menopausal women with metabolic syndrome. OBJECTIVES: The objectives were to identify meaningful subgroups of midlife peri-menopausal and post-menopausal women with metabolic syndrome based on their distinct symptom cluster burden trajectories, and to describe the demographic, social, and clinical characteristics of different symptom cluster burden subgroups. DESIGN: This is a secondary data analysis using the longitudinal data from Study of Women's Health Across the Nation. METHODS: Multi-trajectory analysis using latent class growth analysis was conducted to join the different developmental trajectories of symptom clusters to identify meaningful subgroups and high-risk subgroup for greater symptom cluster burden over time. Then, descriptive statistics were used to explain the demographic characteristics of each symptom cluster trajectory subgroup, and bivariate analysis to examine the association between each symptom cluster trajectory subgroup and demographic characteristics. RESULTS: A total of four classes were identified: Class 1 (low symptom cluster burden), Classes 2 and 3 (moderate symptom cluster burden), and Class 4 (high symptom cluster burden). Social support was a significant predictor of high symptom cluster burden subgroup and highlights the need to provide routine assessment. CONCLUSION: An understanding and appreciation for the different symptom cluster trajectory subgroups and their dynamic nature will assist clinicians to offer targeted and routine symptom cluster assessment and management in clinical settings.

MyKidneyCoach, Patient Activation, and Clinical Outcomes in Diverse Kidney Transplant Recipients: A Randomized Control Pilot Trial.

Kidney transplant (KT) recipients who are not actively engaged in their care and lack self-management skills have poor transplant outcomes, which are disproportionately observed among Black KT recipients. This pilot study aimed to determine whether the MyKidneyCoach app, an mHealth intervention that provides self-management monitoring and coaching, improved patient activation, engagement, and nutritional behaviors in a diverse KT population. Methods: This was a randomized, age-stratified, parallel-group, attention-control, pilot study in post-KT patients. Participants were randomized into the attention-control with access to MyKidneyCoach for education and self-management (n = 9) or the intervention with additional tailored nurse coaching (n = 7). Feasibility, acceptability, and clinical outcomes were assessed. Results: The acceptability of MyKidneyCoach by System Usability Scale was 67.5 (95% confidence interval [CI], 59.1-75.9). Completion rates based on actively using MyKidneyCoach were 81% (95% CI, 57%-93%) and study retention rate of 73%. Patient activation measure significantly increased overall by a mean of 11 points (95% CI, 3.2-18.8). Additionally, Black patients (n = 7) had higher nutrition self-efficacy scores of 80.5 (95% CI, 74.4-86.7) compared with 75.6 (95% CI, 71.1-80.1) in non-Black patients (n = 9) but lower patient activation measure scores of 69.3 (95% CI, 56.3-82.3) compared with 71.8 (95% CI, 62.5-81) in non-Black patients after 3 mo. Conclusions: MyKidneyCoach was easy to use and readily accepted with low attrition, and improvements were demonstrated in patient-reported outcomes. Both Black and non-Black participants using MyKidneyCoach showed improvement in self-management competencies; thus, this intervention may help reduce healthcare inequities in KT.

Child and family factors associated with positive outcomes among youth born extremely preterm.

BACKGROUND: To analyze the relationship of child behavioral and communication disorders, and adverse family events, to later-in-life child health and cognitive function among youth born extremely preterm. METHODS: The study participants were 694 children enrolled in the Extremely Low Gestational Age Newborn Study. At ages 2 and 10, we assessed internalizing and externalizing behaviors, and at age 10, we assessed adverse life events within the family. Associations were evaluated between these child and family factors and positive child health at age 10 years, and global health and cognitive function at age 15 years. RESULTS: Lower T-scores for internalizing or externalizing behaviors at age 2 were associated with more positive health at age 10. The absence of internalizing behaviors at age 10 was associated with better global child health and better cognitive function at age 15. The absence of communication deficits at age 10 was associated with better cognitive function at age 15. The absence of parent job loss was associated with better global child health at age 15. CONCLUSION: Among individuals born extremely preterm, child health and cognitive outcomes might be improved by timely interventions to address child behavioral symptoms and the impact of adverse life events in the family. IMPACT: The absence of child behavioral and communication disorders, and adverse family events, were associated with more positive health, higher global health, and better cognitive function among youth born extremely preterm. Interventions to address behavioral disorders in early childhood, and to reduce the impact of adverse life events on the family, might promote improved health and developmental outcomes for adolescents born extremely preterm.

Caregiver Perspectives on Telemedicine for Postdischarge Care for Children With Medical Complexity: A Qualitative Study.

INTRODUCTION: The objectives of this study were to describe the perspectives of caregivers of children with medical complexity on telemedicine video visits (TMVV) for posthospitalization care and determine whether TMVV may be a viable alternative to in-person follow-up. METHOD: Our qualitative descriptive study included semistructured telephone interviews with 12 caregivers. Data analysis was conducted using an adapted Colaizzi's descriptive phenomenological method for thematic construction. RESULTS: Results were organized into four themes describing caregivers' experiences with TMVV: (1) promoted caregiver self-efficacy and sense of independence; (2) TMVV as convenient, cost-effective, comprehensive, and acceptable; (3) supported caregiver decision-making and problem-solving; and (4) fostered delivery of family-centered care. DISCUSSION: Although in-person visits are necessary for some circumstances, TMVV can serve as a convenient and acceptable alternative for posthospitalization follow-up in children with medical complexity. Overall, caregivers in this study were satisfied with the quality of care and individualized experience of TMVV.

Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions.

Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.

Distinct morning and evening fatigue profiles in gastrointestinal cancer during chemotherapy.

BACKGROUND: Purposes were to identify subgroups of patients with gastrointestinal cancers with distinct morning and evening fatigue severity profiles and evaluate for differences among these subgroups in demographic and clinical characteristics, co-occurring symptoms and quality of life (QOL) outcomes. METHODS: Patients with gastrointestinal cancers (n=405) completed questionnaires six times over two cycles of chemotherapy. Latent profile analysis was used to identify distinct morning and evening fatigue profiles. Differences in demographic and clinical characteristics, co-occurring symptoms and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests. RESULTS: Two distinct mornings (ie, low and very high) and three distinct evenings (ie, low, moderate and very high) fatigue classes were identified. Common risk factors for both morning and evening fatigue included younger age, lower performance status, higher comorbidity burden and self-reported depression. Higher levels of morning fatigue were associated with being unmarried, living alone, being unemployed, having a lower income, lack of regular exercise and a self-reported diagnosis of anaemia. Higher levels of evening fatigue were associated with being women, white and having childcare responsibilities. Patients in the very high morning and evening fatigue classes reported higher levels of anxiety, depressive symptoms, sleep disturbance and pain and lower levels of attentional function and poorer QOL. CONCLUSION: Findings provide new insights into risk factors for and deleterious effects of morning and evening fatigue in patients with gastrointestinal cancers. Clinicians can use this information to identify high-risk patients and develop individualised interventions for morning and evening fatigue and other co-occurring symptoms.

When is caring sharing? Primary care provider interdependence and continuity of care.

ABSTRACT: Efforts to improve access to high-quality, efficient primary care have highlighted the need for team-based care. Most primary care teams are designed to maintain continuity of care between patients and primary care providers (PCPs), because continuity of care can improve some patient outcomes. However, PCPs are interdependent because they care for, or share, patients. PCP interdependence, and its association with continuity of care, is not well described. This study describes a measure of PCP interdependence. We also evaluate the association between patient and panel characteristics, including PCP interdependence. Our results found that the extent of interdependence between PCPs in the same clinic varies widely. A range of patient and panel characteristics affect continuity of care, including patient complexity and PCP interdependence. These results suggest that continuity of care for complex patients is sensitive to panel characteristics, including PCP interdependence and panel size. This information can be used by primary care organizations for evidence-based team design.

Trajectories of Palliative Care Needs in the ICU and Long-Term Psychological Distress Symptoms.

OBJECTIVES: While palliative care needs are assumed to improve during ICU care, few empiric data exist on need trajectories or their impact on long-term outcomes. We aimed to describe trajectories of palliative care needs during ICU care and to determine if changes in needs over 1 week was associated with similar changes in psychological distress symptoms at 3 months. DESIGN: Prospective cohort study. SETTING: Six adult medical and surgical ICUs. PARTICIPANTS: Patients receiving mechanical ventilation for greater than or equal to 2 days and their family members. MEASUREMENTS AND MAIN RESULTS: The primary outcome was the 13-item Needs at the End-of-Life Screening Tool (NEST; total score range 0-130) completed by family members at baseline, 3, and 7 days. The Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Post-Traumatic Stress Scale (PTSS) were completed at baseline and 3 months. General linear models were used to estimate differences in distress symptoms by change in need (NEST improvement ≥ 10 points or not). One-hundred fifty-nine family members participated (median age, 54.0 yr [interquartile range (IQR), 44.0-63.0 yr], 125 [78.6%] female, 54 [34.0%] African American). At 7 days, 53 (33%) a serious level of overall need and 35 (22%) ranked greater than or equal to 1 individual need at the highest severity level. NEST scores improved greater than or equal to 10 points in only 47 (30%). Median NEST scores were 22 (IQR, 12-40) at baseline and 19 (IQR, 9-37) at 7 days (change, -2.0; IQR, -11.0 to 5.0; p = 0.12). There were no differences in PHQ-9, GAD-7, or PTSS change scores by change in NEST score (all p > 0.15). CONCLUSIONS: Serious palliative care needs were common and persistent among families during ICU care. Improvement in needs was not associated with less psychological distress at 3 months. Serious needs may be commonly underrecognized in current practice.

Palliative care phenotypes among critically ill patients and family members: intensive care unit prospective cohort study.

OBJECTIVE: Because the heterogeneity of patients in intensive care units (ICUs) and family members represents a challenge to palliative care delivery, we aimed to determine if distinct phenotypes of palliative care needs exist. METHODS: Prospective cohort study conducted among family members of adult patients undergoing mechanical ventilation in six medical and surgical ICUs. The primary outcome was palliative care need measured by the Needs at the End-of-Life Screening Tool (NEST, range from 0 (no need) to 130 (highest need)) completed 3 days after ICU admission. We also assessed quality of communication, clinician-family relationship and patient centredness of care. Latent class analysis of the NEST's 13 items was used to identify groups with similar patterns of serious palliative care needs. RESULTS: Among 257 family members, latent class analysis yielded a four-class model including complex communication needs (n=26, 10%; median NEST score 68.0), family spiritual and cultural needs (n=21, 8%; 40.0) and patient and family stress needs (n=43, 31%; 31.0), as well as a fourth group with fewer serious needs (n=167, 65%; 14.0). Interclass differences existed in quality of communication (median range 4.0-10.0, p<0.001), favourable clinician-family relationship (range 34.6%-98.2%, p<0.001) and both the patient centredness of care Eliciting Concerns (median range 4.0-5.0, p<0.001) and Decision-Making (median range 2.3-4.5, p<0.001) scales. CONCLUSIONS: Four novel phenotypes of palliative care need were identified among ICU family members with distinct differences in the severity of needs and perceived quality of the clinician-family interaction. Knowledge of need class may help to inform the development of more person-centred models of ICU-based palliative care.

The Psychological Impact of the COVID-19 Pandemic on Postsecondary Students: An Analysis of Self-Determination.

The COVID-19 pandemic has put postsecondary students across the world at risk of psychological distress, negatively impacting their basic psychological well-being, including self-determination. Although the concept of self-determination has been widely discussed in literature, it is poorly understood within the context of postsecondary students during the COVID-19 pandemic. This study aimed to examine the concept of self-determination (SD) as it relates to postsecondary students amid the COVID-19 pandemic. The Rodgers' evolutionary method of concept analysis was used. PubMed, CINAHL, PsycINFO, and ERIC were electronically searched using the keywords "postsecondary students" "coronavirus pandemic" and "self-determination." The historical, legal, educational, and health science literature were investigated to generate a holistic definition of SD in the past. This analysis has identified the antecedents, attributes, and consequences of self-determination in postsecondary students during this global health crisis. This analysis adds to the knowledge base regarding the evolution, significance, and application of the concept of SD in the context of postsecondary students amidst the COVID-19 pandemic. Implications for future research were also explored, such as using strategies to promote SD in postsecondary students to develop resilience during the pandemic.

Symptom Clusters and Key Symptoms Among Midlife Perimenopausal and Postmenopausal Women With and Without Metabolic Syndrome.

BACKGROUND: Midlife perimenopausal and postmenopausal women with metabolic syndrome experience multiple symptoms concurrently. OBJECTIVE: The study objectives were to examine the relationship among symptoms through network visualization and identify and compare symptom clusters and key symptoms across symptom occurrence and symptom severity dimensions in midlife perimenopausal and postmenopausal women with and without metabolic syndrome. METHODS: Cross-sectional data from the Study of Women's Health Across the Nation (Visit 5) were used for analysis. A machine-learning-based network analysis and the Walktrap algorithm were used to fulfill the study objectives. RESULTS: The number and types of symptom clusters differed between the groups. Midlife perimenopausal and postmenopausal women with metabolic syndrome experienced the psychological/somatic/genital cluster (key symptom: frequent mood change), the sleep/urinary cluster (sleep disturbance), and the vasomotor cluster (cold sweat) in the symptom occurrence dimension and the psychological/somatic/sexual cluster (anxiety), the sleep/urinary cluster (sleep disturbance), and the vasomotor/genital cluster (night sweat) in the symptom severity dimension. In contrast, midlife perimenopausal and postmenopausal women without metabolic syndrome experienced the psychological cluster (anxiety), the sleep/somatic/genitourinary cluster (sleep disturbance), and the vasomotor cluster (night sweat) in the symptom occurrence dimension and the psychological/somatic cluster (anxiety), the sleep/urinary cluster (sleep disturbance), the vasomotor cluster (night sweat), and the sexual/genital cluster (vaginal dryness) in the symptom severity dimension. DISCUSSION: The study findings may serve as a knowledge basis for effective assessment and management of symptom clusters and key symptoms in clinical settings and provide directions for future development of targeted symptom management interventions.

Caregivers' perception of the role of the socio-environment on their extremely preterm child's well-being.

PURPOSE: The purpose of this qualitative descriptive study was to explore primary caregivers' perception of how social-environmental characteristics, and their own role as primary caregivers, affected their extremely preterm adolescent's well-being. METHODS: Participants were 20 mothers who identified as the primary caregiver of an adolescent born extremely prematurely (<28 weeks gestation) enrolled in the ELGAN cohort study. Data was collected through individual interviews and was analyzed using inductive content analysis. RESULTS: A total of three themes, and five subthemes, were identified. The two main themes were "familial impact to health and well-being," and "contributors and barriers at the community level." This study described specific familial and community contributors to child and caregiver well-being, including: the importance of advocacy, participating in community activities, and social and familial support networks. CONCLUSIONS: Overall, while there are individual level characteristics that contribute to well-being, a support structure at the family and community level is essential to children born extremely prematurely, and their mother's, well-being. PRACTICE IMPLICATIONS: Healthcare providers caring for these families should understand that not only are extremely preterm youth affected by prematurity, but caregivers are also deeply impacted. Therefore, it is essential that maternal and family care is emphasized by nurses and healthcare providers.