Optimism despite profound uncertainty: school and social relationships in adolescents with single ventricle heart disease.

BACKGROUND: Survivors of single ventricle heart disease must cope with the physical, neurodevelopmental, and psychosocial sequelae of their cardiac disease, which may also affect academic achievement and social relationships. The purpose of this study was to qualitatively examine the experiences of school and social relationships in adolescents with single ventricle heart disease. METHODS: A descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review. RESULTS: Fourteen adolescents (aged 14 to 19 years) with single ventricle heart disease participated. Interviews ranged from 25 to 80 minutes in duration. Four themes emerged from the interviews, including "Don't assume": Pervasive ableism; "The elephant in the room": Uncertain future; "Everyone finds something to pick on": Bullying at school; "They know what I have been through": Social support. The overall essence generated from the data was "optimism despite profound uncertainty." CONCLUSIONS: Adolescents with single ventricle heart disease identified physical limitations and school challenges in the face of an uncertain health-related future. Despite physical and psychosocial limitations, most remained optimistic for the future and found activities that were congruent with their abilities. These experiences reflect "optimism despite profound uncertainty."

Relationships within MOMS Orange County care coordinated home visitation perinatal program.

PURPOSE: The study aimed to examine how registered nurses (RNs) and paraprofessional home visitors (PHVs) work together as a team to care for underserved perinatal women in a coordinated home visitation program. DESIGN AND METHODS: Qualitative methods were used to understand the perspectives of three RNs and twenty PHVs who worked at MOMS Orange County, a community-based perinatal health program. Individual one-on-one interviews were administered with the RNs and focus groups with the PHVs. Qualitative content analysis was conducted to synthesize themes. RESULTS: RNs perceived themselves as educators, mentors, and supervisors. PHVs thought of themselves as supporters, coaches, and advocates. Interdependence and proactive communication were favorable characteristics of the relationship in which RNs trained PHVs to provide health education. The positive interactions between RNs and PHVs appeared to enhance the client-healthcare provider connection. CONCLUSIONS: Our study is one of the first to describe relationships and communication patterns among the healthcare team in a coordinated home visitation program in the United States. Future studies should examine how additional members of the team, including clients and healthcare providers, view their experiences with a home visitation program.

Web-based tailored intervention for preparation of parents and children for outpatient surgery (WebTIPS): formative evaluation and randomized controlled trial.

BACKGROUND: The purpose of this 2-phase project was to conduct a formative evaluation and to test the preliminary efficacy of a newly developed Web-based Tailored Intervention for Preparation of parents and children undergoing Surgery (WebTIPS). METHODS: Phase 1 enrolled 13 children 2 to 7 years of age undergoing outpatient elective surgery and their parents for formative evaluation of WebTIPS. Parent participation focus groups are common in qualitative research and are a method of asking research participants about their perceptions and attitudes regarding a product or concept. In phase 2, children 2 to 7 years of age in 2 medical centers were assigned randomly to receive the WebTIPS program (n = 38) compared with children receiving the standard of care (n = 44). The primary outcome of phase II was child and parent preoperative anxiety. RESULTS: In phase 2, parents reported WebTIPS to be both helpful (P < 0.001) and easy to use (P < 0.001). In phase 2, children in the WebTIPS group (36.2 ± 14.1) were less anxious than children in the standard of care group (46.0 ± 19.0) at entrance to the operating room (P = 0.02; Cohen d = 0.59) and introduction of the anesthesia mask (43.5 ± 21.7 vs 57.0 ± 21.2, respectively, P = 0.01; Cohen d = 0.63). Parents in the WebTIPS group (32.1 ± 7.4) also experienced less anxiety compared with parents in the control group (36.8 ± 7.1) in the preoperative holding area (P = 0.004; Cohen d = 0.65). CONCLUSIONS: WebTIPS was well received by parents and children and led to reductions in preoperative anxiety.

Feasibility of a caregiver-assisted exercise program for preterm infants.

Mounting evidence shows that low-birth-weight and prematurity are related to serious health problems in adulthood, including increased body fat, decreased fitness, poor bone mineralization, pulmonary problems, and cardiovascular disease. There are data to suggest that increasing physical activity in preterm infants will have effects on short-term muscle mass and fat mass, but we also hypothesized that increasing physical activity early in life can lead to improved health outcomes in adulthood. Because few studies have addressed the augmentation of physical activity in premature babies, the objective of this study was to evaluate the feasibility of whether caregivers (mostly mothers) can learn from nurses and other healthcare providers to implement a program of assisted infant exercise following discharge. Ten caregivers of preterm infants were taught by nurses, along with occupational therapists and other healthcare providers, to perform assisted infant exercise and instructed to conduct the exercises daily for approximately 3 weeks. The researchers made home visits and conducted qualitative interviews to understand the caregivers' experiences with this exercise protocol. Quantitative data included a caregiver's daily log of the exercises completed to measure adherence as well as videotaped caregiver sessions, which were used to record errors as a measure of proficiency in the exercise technique. On average, the caregivers completed a daily log on 92% of the days enrolled in the study and reported performing the exercises on 93% of the days recorded. Caregivers made an average of 1.8 errors on 2 tests (with a maximum of 23 or 35 items on each, respectively) when demonstrating proficiency in the exercise techniques. All caregivers described the exercises as beneficial for their infants, and many reported that these interventions fostered increased bonding with their babies. Nearly all reported feeling "scared" of hurting their babies during the first few days of home exercise but stated that fears were alleviated by practice in the home and further teaching and learning. Caregivers were willing and able to do the exercises correctly, and they expressed a belief that the intervention had positive effects on their babies and on caregiver-infant interactions. These findings have important implications for nursing practice because nurses are in key positions to teach and encourage caregivers to practice these exercises with their newborn babies.

Women's health research agenda for the next decade. A report by the Women's Health Expert Panel of the American Academy of Nursing.

Research in women's health has regained momentum with the recent release of several reports from various institutes and organizations. The Office of Research on Women's Health (ORWH) of the National Institutes of Health and the Institute of Medicine (IOM) both reported on women's health research. Within a year, Congress enacted the Affordable Care Act, stipulating support for clinical preventive services for women, prompting further reports focused on clinical care for women. These two research-dominant reports (NIH ORWH and the IOM) are the subject of this manuscript. The purpose is to outline and critically analyze the reports from a grounded nursing perspective and to propose a complementary and expanded agenda for furthering research in women's health. A separate manuscript analyzes and makes recommendations based on additional reports about clinical services and policies that will benefit the health status of women.

Irritability: A concept analysis.

Irritability is a term used to describe feelings of anger, annoyance and impatience, and is commonly experienced by individuals in daily life. However, there are diverse conceptualizations of irritability in public and clinical research, which often result in confusing irritability with anger and other overlapping concepts. This, in turn, leads to a lack of conceptual clarity. Accordingly, the purpose of this concept analysis was to explore the irritability concept, including its definitions, defining characteristics, antecedents, consequences and empirical referents. The findings showed that irritability is predominantly conceptualized as a psychophysiological concept in the literature. We demonstrated that irritability can be differentiated from overlapping concepts like anger by qualities, such as 'unpredictability and lowered emotion control', 'lowered threshold for negative emotional stimuli', 'being manifested in response to frustrative situations or physiological needs' and 'experience of disproportionate and unjustified emotional irritation'. Importantly, severe irritability prospectively predicts psychiatric disorders and greater impairments in health, financial, educational and social functioning in individuals. Taken together, our analysis showed that one should take into account the context, duration, intensity and importantly outcomes, when assessing irritability in an individual. Considering these findings and the presence of irritability in nursing practice, it is crucial for nurses to recognize and successfully identify this concept in the nursing care they provide within the diverse settings and patient populations.

Designing an mHealth Roadmap for the Journey to Self-Management: A Qualitative Study with Adolescents and Young Adults Living with Chronic Illness.

OBJECTIVES: Adolescents and young adults (AYA) with chronic illnesses often struggle with illness self-management. The objective of this study is to understand how AYA with various chronic illnesses develop self-management skills and which mobile health (mHealth) strategies they believe could be helpful. METHODS: Semi-structured interviews were conducted with patients, between 16 to 20 years old, living with at least one chronic illness (N = 19), between 2018 and 2019 in Los Angeles, CA. Three coders completed thematic coding to understand how AYA develop and maintain self-management skills, to inform the development of mHealth interventions appropriate across a variety of chronic conditions. RESULTS: Results suggest that AYA develop self-management skills through several strategies, including (1) getting organized, (2) making it work for me and (3) keeping the right mentality. AYA described developing these strategies through: (1) receiving social support, (2) accessing helpful tools and technologies, and (3) going through a maturation process. They provided recommendations for mHealth intervention developers. DISCUSSION: The results suggest that an appealing mHealth intervention could support AYA patients in proactively acquiring self-management skills and prevent having to rely on trial and error or uneven access to guidance and support. Interventions should be responsive to individual technology preferences and practices.

Development of an informational web site for recruiting research participants: process, implementation, and evaluation.

Internet-based research is increasing, yet there is little known about recruitment approaches that target the Internet. Investigators have been slow to discuss how to plan, develop, and enhance recruitment using the Internet when well-concealed or disparate populations, sensitive topics, or qualitative methods are interspersed into the aims of the study. The twofold purpose of this article was to (1) highlight the major steps and strategies undertaken to develop and implement an innovative Web site for recruiting high-genetic-risk couples who were considering preimplantation genetic diagnosis use, and (2) present the recruitment results and lessons learned based on enrollment, self-evaluation, and descriptive data. The Web site was developed using a five-step process designed by the investigators. A significant step in the process was determining the Web site objectives, which were enacted through contextual and design decisions, and also by incorporating a brief video and study logo into the Web site. The recruitment results indicate that, of the 22 participant couples, ∼82% were recruited via the Internet versus traditional recruitment approaches (ie, clinics, newsletters) and that the majority of couples viewed the Web site prior to enrolling in the study. In conclusion, developing a Web site using the five-step process can facilitate recruitment.

Nurses' perceptions: Addressing social determinants of health to improve patient outcomes.

Nursing organizations and leaders adopted the social determinants of health (SDOH) as essential to the delivery of health care, but little is known about working registered nurses' (hereafter nurses) views on the SDOH. The purpose of this study was to (1) explore nurses' perceptions of how SDOH affect patient care and (2) describe nurses' ideas about how SDOH can be addressed to improve outcomes and services. Thirteen registered nurses with a baccalaureate in nursing beginning their online graduate advanced practice educational program were interviewed. This qualitative descriptive study used constant comparative analysis for data analysis. The analysis found two major themes: (1) SDOH are integrated into the nurses' care. The SDOH experienced by patients challenges the nurses to provide care at the patient's level and to provide usable patient education, and (2) health-care delivery change is needed to achieve equity and to provide health care to those in need. The nurses recommended more organized, seamless health-care delivery and interdisciplinary advocacy to achieve these needed changes. Nurse educators and nurse leaders can harness the frustration and ingenuity of nurses to help the nurses advocate for health-care change that integrates the SDOH.

Adolescent Latinas' with Diabetes and Their Mothers' Understanding of Diabetes and Reproductive Health: Converging Themes to Inform a Culturally Sensitive Preconception Counseling Program.

INTRODUCTION: Latinas are at an increased risk for diabetes and reproductive health (RH) complications with sexuality and pregnancy. This study explored the understanding of diabetes related to RH, pregnancy, unplanned pregnancies, preconceptioncounseling, tight-control, and family planning among Latina adolescents with diabetes and their mothers and explored converging themes. METHOD: The qualitative descriptive study used written open-ended questions (English or Spanish) with Latina mothers (n = 13) and daughters (n = 21). Responses were transcribed. Content analysis was used by four researchers who coded and discussed themes and reached consensus. Converging themes were confirmed using Atlas.ti software. RESULTS: Seven themes emerged from the mother-daughter dyad: communication (awkwardness, ambivalence, styles); control (being controlled vs. controlling); consequences (fertility, complications); planning (pregnancy, being healthy, life plan, RH); support; danger, risk, and safety; and stigma. DISCUSSION: Many mother-daughter dyads were not ready to discuss RH among themselves. Cultural and familial perspectives should be considered when providing care and preconception counseling to this population.

"It's a horrible assignment": A qualitative study of labor and delivery nurses' experience caring for patients undergoing labor induction for fetal anomalies or fetal demise.

OBJECTIVES: This study sought to explore labor and delivery (L&D) nurses' experiences caring for women undergoing induction for intrauterine fetal demise (IUFD) or termination for fetal anomalies, and to characterize reluctance towards participation in abortion care or - conversely - the commitment to provide services. STUDY DESIGN: Researchers conducted a qualitative study that consisted of open-ended, semistructured interviews with 15 registered nurses who care for women on L&D at a large metropolitan hospital. We analyzed these data for content and themes. RESULTS: Labor and delivery nurses struggle emotionally, logistically, and morally with bereavement care, whether their patients are experiencing an IUFD or termination for fetal anomalies. The analysis generated the following themes: the emotionally intense work of perinatal loss, feelings of incompetence in bereavement care, ethical conflicts, and judgment of both termination and IUFD patients. In addition, nurses who chose to provide care for patients undergoing induction termination for fetal anomalies described a duty to care for all patients despite the increased logistic and emotional burden. CONCLUSIONS: Much of the discomfort L&D nurses reported caring for patients undergoing induction termination stems from the emotional toll, lack of skills, and bureaucratic burden of bereavement care rather than a moral objection to abortion. Instituting interventions to improve staffing, simplify paperwork, augment bereavement training, and improve support for the emotional burden of caring for these patients may therefore increase access to competent and compassionate abortion care. IMPLICATIONS: Labor and delivery nurses struggle with bereavement care whether their patients are experiencing an IUFD or termination for fetal anomalies. Instituting interventions - like interdisciplinary simulation - to support nurses in bereavement care may increase the number willing to participate in abortion care, thereby improving patient access.

Effect of diabetes self-management education on glycemic control in Latino adults with type 2 diabetes: A systematic review and meta-analysis.

PURPOSE: This systematic review and meta-analysis evaluated the effectiveness of diabetes self-management education (DSME) in reducing glycosylated hemoglobin (A1C) levels in adult Latinos with type 2 diabetes (T2DM). METHODS: Five databases were searched for DSME randomized controlled trials or quasi-experimental trials published between January 1997 and March 2019. A random effects model was utilized to calculate combined effect sizes. Subgroup analyses were performed to explore possible sources of heterogeneity between studies. RESULTS: Twenty-three unique studies met criteria for this systematic review and of these, 18 were included in the meta-analysis. Pooled estimate effect of DSME on A1C from the random effect model was -0.240 (95% confidence interval = -0.345, -0.135, p <  0.001). There was moderate heterogeneity (Cochrane Q=30.977, P=0.020, I^2 = 45.121) between the studies. Subgroup analyses demonstrated greater A1C reductions in studies with intervention duration ≤6 months, initial A1C baseline values >8.0 [69 mmol/mol], and team-based approach. CONCLUSIONS: Meta-analysis results showed that culturally tailored DSME interventions significantly reduce AIC in Latinos with T2DM despite the heterogeneity across the studies. IMPLICATIONS: The heterogeneity in the study methodologies reinforce the need for additional studies to better understand DSME interventions to reduce disparities in Latino adults with T2DM.

A Program Model Describing a Community-Based Mother and Infant Health Program.

BACKGROUND AND PURPOSE: The objective of this study was to formulate a MOMS Orange County program model to describe the components and function of a successful community-based maternal and infant health program. METHODS: A logic framework was used to guide the development of the MOMS program model. Twenty-five MOMS staff members were interviewed; MOMS documents and existing research literature were reviewed. Content analyses were used to identify themes of interviews and the review guide was used to summarize the documents. RESULTS: The key components of the MOMS program were identified to formulate a narrative and graphic model. The main elements of this model included: target population (underserved women who have low socioeconomic status and have limited access to healthcare in Orange County); theoretical assumptions (social determinants of health, human ecology, self-efficacy); goals (empower women, enhance health of infants, strengthen families); inputs (funded by public and private sources; 50 staff members); activities (care-coordination home visitation community-center group health education); outputs (the number of home visitations, referrals to medical and/or psychological services, and group health education classes); and outcomes (short-term: healthy pregnancy, birth outcomes, family support; medium-term: postpartum well-being, infant development, family functioning; long-term: women's well-being, children's development, family relationships. Future research should test how this model functions to empirically improve maternal, newborn, child, and family health. IMPLICATIONS FOR PRACTICE: The MOMS program provides a new approach to community-based maternal and infant health interventions focusing on health promotion and disease prevention for underserved families in socioeconomically disadvantaged communities.

Pregnancy and birth history influence women's experience of menopause.

OBJECTIVE: The determinants of experiencing menopausal symptoms are complex, representing biological, psychological, and social factors. We report the impact of one such factor, fertility, on the experience of menopausal symptoms. We hypothesize that nulliparous women will have more dissatisfaction with childbearing choices and more negative attitudes toward menopause but will experience fewer menopausal symptoms. DESIGN: Women aged 40 to 65 years were recruited from a single internal medicine practice to participate in a 5-year longitudinal study of the impact of menopause on health-related quality of life. Women completed questionnaires including the RAND-36, attitudes toward menopause, menopausal symptoms, and fertility and childbearing. Based on self-reported pregnancy and birth history, we categorized women as parous (one or more live births), nulligravida (no pregnancies or births), and nulliparous (one or more pregnancies and no live births). Categorical variables were analyzed using univariable and multivariable ordered logistic and logistic regression. Continuous variables were analyzed using Student's t test and multivariable linear regression techniques. RESULTS: The 728 participants were, on average, 50.8 years old with 2.4 pregnancies and 1.7 live births. Compared with parous women, nulligravida and nulliparous women were more likely to report being very dissatisfied with childbearing choices (odds ratio [OR] [95% CI]: 3.3 [2.3-4.6] and 4.0 [2.5-6.4], respectively). Nulliparous, but not nulligravida, women expressed more negative attitudes toward menopause compared with parous women (P<0.001). Nulligravida and nulliparous women were half as likely to report hot flashes as parous women (OR [95% CI]: 0.6 [0.4-0.9] and 0.5 [0.3-0.9], respectively). Compared with parous women, nulligravida women were less likely to report vaginal dryness (OR [95% CI]: 0.5 [0.3-0.7]). CONCLUSIONS: Our study examined the impact of pregnancy and birth history on menopausal symptoms, and the findings support the hypothesis that women who experience infertility may find menopause to be a time of normalcy and experience fewer hot flashes. Both physiologic and psychosocial mechanisms deserve further study.

Interest in the use of computerized patient portals: role of the provider-patient relationship.

BACKGROUND: Bioinformatics experts are developing interactive patient portals to help those living with diabetes and other chronic diseases to better manage their conditions. However, little is known about what influences patients' desires to use this technology. OBJECTIVE: To discern the impact of the provider-patient relationship on interest in using a web-based patient portal. DESIGN: Qualitative analysis of focus groups. PARTICIPANTS: Ten focus groups involving 39 patients (range 2-7) recruited from four primary care practices. APPROACH: A qualitative approach was used, which involved reading transcribed texts until a consensus was reached on data interpretation. An intercoder reliability kappa score (0.89) was determined by comparing the provider-patient relationship talk selected by the two coders. A conceptual framework was developed, which involved the development and refinement of a codebook and the application of it to the transcripts. RESULTS: Interest in the portal was linked to dissatisfaction with the provider-patient relationship, including dissatisfaction with provider communication/responsiveness, the inability to obtain medical information, and logistical problems with the office. Disinterest in the portal was linked to satisfaction with the provider-patient relationship, including provider communication/responsiveness, difficulty in using the portal, and fear of losing relationships and e-mail contact with the provider. No patient identified encrypted e-mail communication through the portal as an advantage. CONCLUSIONS: Promoting the use of computerized portals requires patient-based adaptations. These should include ease of use, direct provider e-mail, and reassurances that access and interpersonal relationships will not be lost. Education is needed about privacy concerns regarding traditional e-mail communication.

Living with diabetes: normalizing the process of managing diabetes.

PURPOSE: The purpose of this qualitative study was to explore perceptions of people with diabetes about their experience of living with and managing their diabetes. METHODS: This study was part of a larger study of patients with diabetes who used a novel computer portal system for access to information about diabetes and to their health care providers for enhanced communication. The research method used for this portion of the study was grounded theory methodology, a particular kind of qualitative research method. RESULTS: A central theme generated from the data was "normalizing an identity as a person with diabetes." The participants described themselves as diabetic; they took on an identity in which having diabetes was central. They struggled with how to become "a person with diabetes" rather than a "diabetic person." CONCLUSIONS: For people who are diagnosed with diabetes, there is a struggle to become a person with diabetes rather than a diabetic person and to manage the lifestyle changes that are mandated by this role/identity. One way of dealing or coping with this new identity is to begin to "normalize" these lifestyle changes-to view them as healthy living for all people, those with and without diabetes. This will then have implications for interventions-encouraging healthy lifestyles among people with diabetes rather than emphasizing that people with diabetes are "different from" the general population.