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  Diagnoses Associated with Intellectual and Developmental Disabilities in Adult Decedents: A Secondary Analysis of Healthcare Cost and Utilization Project National Inpatient Sample (HCUP/NIS) Data

  Briere, Heather (2023-02-17)

  Purpose: To identify primary and secondary diagnoses preceding death among adults with and without IDD who died during hospitalization. Specific Aims: 1) to describe the commonly reported base diagnostic related groups preceding death among decedents with and without IDD who died during hospitalization in 2019, 2) to determine which base-DRGs had a higher prevalence rate among adults with IDD than among adults without IDD, controlling for age, gender, race, urbanicity of person’s residence, US census division of hospital, and mean income of person’s zip code, and 3) to use the base-DRGs and ICD-10-CMs to examine the conditions of the Fatal Four/Five as conditions of concern preceding death in decedents with and without IDD. Framework: The NIMHD Minority Health and Health Disparities Research Framework. Design: A secondary data analysis using the 2019 Healthcare Cost and Utilization Project National (Nationwide) Inpatient Sample (HCUP-NIS). Results: Identified fourteen primary diagnoses at the time of death for decedents with IDD that are represented at a higher percentage than for decedents without IDD and have a significant odds ratio for IDD diagnosis. Conclusion: A new set of conditions is proposed to assist nurses in reducing preventable deaths in decedents with IDD. Dehydration, GI obstruction, respiratory infection, seizures, and sepsis, will be known as the IDD Concerning Conditions. Aspiration, constipation, and GERD, the IDD Contributing Conditions, are conditions that do not cause death in themselves but contribute to the development of at least one of the IDD Concerning Conditions, which do cause death.
• Mental Illness Knowledge and Stigma of Jamaican Diaspora & First-Generation Jamaican Americans

  Nyakako, Rose Marie (2022-12-15)

  PURPOSE: To describe U.S. Jamaican diasporan and first-generation Jamaican Americans knowledge of and stigma towards mental illness. SPECIFIC AIMS: 1. Describe U.S. dwelling Jamaican diaspora and first-generation Jamaican Americans knowledge of mental illness and stigma towards mental illness with identification of drivers and facilitators of stigma. 2. Elicit descriptors used by Jamaican diaspora and first-generation Jamaican Americans to describe mental illness. 3. Determine association of mental illness stigma and mental illness knowledge, to age, gender, education, employment, religiosity, years living in the U.S., socioeconomic status, personal history of mental illness, and family member with mental illness. FRAMEWORK: The Health Stigma and Discrimination Framework. DESIGN: Cross-sectional descriptive survey. RESULTS: Jamaican diaspora years have less knowledge (mean 97.25, SD 10.27) than Jamaican Americans (mean 104.24, SD 7.74; p =.001). Participants > 40 years had less knowledge (mean 97.05, SD 9.54) than those < 40 years (mean 102.08, SD 10.95; p =.003). Jamaican diaspora years have more stigma (mean -.52, SD .76) than Jamaican Americans (mean -1.10, SD .73; p < .001). Participants > 40 years had more stigma (mean -.48, SD .69) than those < 40 years (mean 1.02, SD .87; p <.001). CONCLUSION: Older adults have less knowledge of mental illness and more stigma. Jamaican diaspora has less knowledge and more stigma than First-generation Jamaican Americans. Greater mental illness knowledge is associated with less stigma providing support for ongoing efforts to increase public knowledge of mental illness with added emphasis on word choice/terms used when talking about people with mental illness. PURPOSE: To describe U.S. Jamaican diasporan and first-generation Jamaican Americans knowledge of and stigma towards mental illness. SPECIFIC AIMS: 1. Describe U.S. dwelling Jamaican diaspora and first-generation Jamaican Americans knowledge of mental illness and stigma towards mental illness with identification of drivers and facilitators of stigma. 2. Elicit descriptors used by Jamaican diaspora and first-generation Jamaican Americans to describe mental illness. 3. Determine association of mental illness stigma and mental illness knowledge, to age, gender, education, employment, religiosity, years living in the U.S., socioeconomic status, personal history of mental illness, and family member with mental illness. FRAMEWORK: The Health Stigma and Discrimination Framework. DESIGN: Cross-sectional descriptive survey. RESULTS: Jamaican diaspora years have less knowledge (mean 97.25, SD 10.27) than Jamaican Americans (mean 104.24, SD 7.74; p =.001). Participants > 40 years had less knowledge (mean 97.05, SD 9.54) than those < 40 years (mean 102.08, SD 10.95; p =.003). Jamaican diaspora years have more stigma (mean -.52, SD .76) than Jamaican Americans (mean -1.10, SD .73; p < .001). Participants > 40 years had more stigma (mean -.48, SD .69) than those < 40 years (mean 1.02, SD .87; p <.001). CONCLUSION: Older adults have less knowledge of mental illness and more stigma. Jamaican diaspora has less knowledge and more stigma than First-generation Jamaican Americans. Greater mental illness knowledge is associated with less stigma providing support for ongoing efforts to increase public knowledge of mental illness with added emphasis on word choice/terms used when talking about people with mental illness.
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  A Feasibility Study of Therapeutic Conversations with Family Members to Reduce the Symptoms of Post-Intensive Care Syndrome

  Tehan, Tara M. (2022-05-25)

  PURPOSE: The purpose of this feasibility study was to explore the use of a nurse-centered intervention, the Critical Caring Program, with family members of critically ill adults. The intervention was a series of therapeutic conversations with a family member, beginning in the ICU and following patient discharge from the ICU. FRAMEWORK: The Family Adjustment and Adaptation Response Model (Patterson, 1988) provided the conceptual framework; the intervention was adapted from the Calgary Family Assessment and Intervention Model. DESIGN: A randomized, controlled design with two groups (usual care and intervention) was used to assess the feasibility of the intervention. A convenience sample of 19 adult family members were recruited from an 18-bed ICU from October 2021–January 2022. RESULTS: 151 family members were screened for participation; 40 who were eligible and 19 were enrolled. Overall retention was 58% for the intervention group; 62% for the usual care group. Outcomes revealed no statistically significant differences between groups or changes within groups. The nurses viewed the training and conversations as positive but identified incorporating the visits into routine practice as challenging. CONCLUSION: The Calgary Family Intervention Model is a useful model for addressing families’ need for communication and support. Additional research is needed on incorporating therapeutic conversations into critical care nursing practice.
• “I felt isolated”: Patients’ Hospitalization Experiences During the COVID-19 Pandemic

  Patrick, Julia (2022-04-25)

  Purpose: The purpose of this Qualitative Descriptive study was to describe the experience of hospitalized adults during the pandemic who did not have COVID-19. Specific Aims: The specific aims of the study were to: Describe the hospital experience, including but not limited to, interactions with hospital staff, visitation, isolation, physical and emotional stressors, and the environment. Identify perceived comfort needs during hospitalization and perceptions of the nurse’s role in providing comforting interventions. Examine the ability to achieve physical, psychospiritual, sociocultural, and environmental comfort during hospitalization despite the required infection control measures. Framework: This study was guided by Kolcaba’s Theory of Comfort (1994). Design: This was a qualitative descriptive study. Semi-structured interviews were conducted. Interview questions focused on the overall hospital experience, the nurse’s role in their experience, comfort needs, and the experience of having comfort needs met during the hospitalization. Results: Twenty participants took part in this study. Conventional content analysis revealed five main themes. The themes are: I don’t expect the hospital to be comfortable, I was always tense, Wanting human connection, Communication is important, and Nurses are busy. Conclusion: The findings identified a need for targeting education, research, and policy development to improve patient comfort (physical, psycho-spiritual, sociocultural, and environmental). This is important as we look toward improving the overall patient experience during hospitalization.
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  Individuals With Sickle Cell Disease Using SBAR as a Communication Tool: Secondary Data Analysis

  Jean-Baptiste, Deborah M. (2022-04-20)

  Purpose: The purpose of this study was to determine the usefulness of SBAR-cued web-based communication skills training and address study participants' perceptions of the training. Specific Aims: Evaluate the usefulness and accuracy of participants to answer prompts of SBAR-cued communication responses. Describe individuals' perspectives of the acceptability of using SBAR patient-HCP communication simulation to better prepare for ED visits during a SCC. Framework: This study was guided by The Theory of Self-Care Management for Sickle Cell Disease (SCMSCD). Design: A secondary analysis was conducted using a qualitative descriptive approach. Inter-rater reliability (IRR) of qualitative data was used to evaluate the usefulness and accuracy of participants to answer prompts of SBAR-cued communication responses. Content analysis was also utilized to describe individuals' perspectives of the acceptability of using SBAR patient-HCP communication simulation to better prepare for ED visits during a SCC. Results: IRR between raters ranged from 64%-94% with predominant themes of (1) Patient-Provider Communication and Interaction, (2) Patients want to be Heard and Believed, (3) Accuracy of the ED Experience and Incorporating the Uniqueness of each Patient and (4) Overall Usefulness of the Video Trainer emerging. Conclusions: This secondary analysis supported how SBAR can be effectively used to assist patients in a SCC to communicate with their HCP. Participants' responses indicated the training module facilitated communication between patients and HCPs.
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  Experiences with Exposure to a Distant Reiki Intervention during the COVID-19 Pandemic

  DiBenedetto, Jennifer (2022-01-04)

  Purpose: The purpose of the study was to explore the use of virtual distant Reiki as a healing modality to influence the human environmental field patterning. Specific Aims: (1) To determine if it is feasible to recruit and retain participants (through expressions of human choice) to participate in a study comprised of two distant Reiki administrations on a virtual platform. (2) To investigate the preliminary influence of a distant Reiki intervention on pattern of the whole as manifested by participant response in stress and anxiety. (3) To explore the participant’s reflections on their virtual distant Reiki experience within the human environmental field pattern of their home environment as a healing space. Theoretical Framework: The theoretical framework is grounded in Martha Rogers’ Science of Unitary Human Beings. Design: This study incorporates a feasibility, mixed method design. Data was collected through pre and post intervention individualized interviews and two tools (State Trait Anxiety Inventory (STAI) and Impact of Events Scale-Revised (IES-R)). Results: Described changed in pattern manifestation supported the need for home-based interventions during covid 19 pandemic. Quantitative response indicated a statistically significant reduction in perceived stress and anxiety (p< 0.001). Conclusion: The preliminary study findings support the feasibility of a distant Reiki and suggest that nurses, who are Reiki practitioners, may be influential in interacting with the human environmental field to promote change and foster healing.
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  Moral Challenges, Moral Distress, and Moral Resilience in Critical Care Nurses During the COVID-19 Pandemic

  Malatesta, Thin Zar (2021-09-24)

  PURPOSE: The purpose of this qualitative descriptive study was to describe critical care nurses’ experiences of moral challenges, moral distress, and moral resilience during the COVID-19 pandemic. The specific aims of this study were to: 1. Describe the moral challenges experienced by ICU nurses. 2. Describe moral resilience in terms of integrity, buoyancy, moral efficacy, self-regulation, and self-stewardship among ICU nurses (from Rushton’s framework). 3. Explore the relationship between moral distress and moral resilience to advance the concept of moral resilience in the face of the COVID-19 pandemic. FRAMEWORK: This study was undergirded by an adaptation of Rushton’s conceptual framework of moral concepts. DESIGN: A qualitative descriptive design was used. Participants were recruited between January to May 2021, and a semi-structured interview guide was utilized to interview participants. RESULTS: 17 participants were interviewed for the study. Participants described the four themes of moral challenges: death and dying, pain and suffering, being alone, and being helpless and not in control. Moral resilience was described as: integrity, buoyancy, moral efficacy, self-regulation, self-stewardship, and self-perception. The relationship between moral distress and moral resilience was described as iterative and fluid. CONCLUSION: The findings of the study provided a new domain of moral resilience called self-perception and a revised adaptation of the conceptual framework for moral resilience.
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  Ubiety in Nursing Practice — Making each patient the star of the minute

  Amoah, Rita K. (2021-07-30)

  PURPOSE: The purpose of this study was to explore the experiences of registered nurses when practicing ubiety. SPECIFIC AIMS: The specific aims of the study were to: Describe the attributes of the nurse, the care environment, and the person-centered processes nurses needed to possess in order to immerse themselves physically, cognitively, and spiritually into caring for one patient at a time in midst of distractions Explore possible patient-related and nurse-related outcomes when caring for one patient at a time in amidst distractions DESIGN: Qualitative descriptive study guided with the Person-Centered Nursing (PCN) Theory by McCormack and McCance, (2006). A purposive sampling technique was used. RESULTS: 13 nurses, who were nominated to receive the Daisy Award were recruited. One overarching theme: Practicing Ubiety—Making the patient the star of that minute, and 5 subthemes emerged: anticipating and managing distractions, putting my whole self in, self-preservation, my nursing identity, favorable practice environment. In addition, patient-related and nurse-related outcomes were identified. CONCLUSION: Ubiety is a concept that is practiced by expert nurses. Results add to existing knowledge about the characteristics of exemplar nurses who practice person-centered nursing care. The importance of anticipating patient needs as a way to deal with distractions and working with nurses to individualize self-preservation strategies are emphasized.
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  Facilitators and Inhibitors of LPN-to-RN Student Transition: A National Survey Study

  Cornine, Amanda (2021-07-15)

  PURPOSE: The purpose of this national survey study was to describe the transition conditions (facilitators and/or inhibitors) encountered by LPN-to-RN students. SPECIFIC AIMS: (1) describe the frequency of specific transition conditions experienced by LPN-to-RN students; (2) explore relationships between transition conditions experienced by LPN-to-RN students and student (personal) and program (community) characteristics; and (3) characterize (through open-ended questions) transition conditions experienced by LPN-to-RN students that were not included in the empirically-based investigator-designed survey. FRAMEWORK: This study was framed by Meleis et al.’s (2000) transition theory; each transition condition included in the survey was linked to one or more category of transition conditions described by Meleis et al. DESIGN: In March 2020, a cross-sectional national survey was distributed to all LPN-to-RN programs in the United States. RESULTS: 873 students, in programs across 37 states, responded to the survey. The least frequently reported facilitators were emotional support from faculty and finding online courses helpful. The most frequently reported inhibitors were personal stress and balancing school with non-school responsibilities. The most frequent characteristic related to transition conditions was taking classes with non-LPNs. Respondants reported several transition conditions not included in the survey, including prior experiences (facilitator) and challenges related to the COVID-19 pandemic (inhibitor). CONCLUSION: These results suggest areas where faculty can further support LPN-to-RN students through their own actions and highlight the importance of carefully planning how to integrate LPN and non-LPN nursing students if they share classes.
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  New Graduate Nurses' Perception of the Impact of Dedicated Education Units on Transition to Practice: A Descriptive Study

  Berube, Jennifer A. (2021-05-16)

  PURPOSE: The purpose of this research was to identify the value of undergraduate nursing student clinical preparation within a dedicated education unit on transition to practice. SPECIFIC AIMS: Describe perceived competence, practice readiness, self-efficacy, job satisfaction, intent-to-stay and orientation length of students who participated in a clinical experience in a dedicated education unit upon graduation, 3- and 6-months employment. Explore new graduate nurses’ perception of the impact of a dedicated education unit clinical experience on transition to practice. Examine relationships between outcome variables. Explore associations between outcome variables and demographic and employment characteristics. FRAMEWORK: This research was guided by Albert Bandura’s Social Learning Theory. DESIGN: This study used a descriptive, longitudinal design with quantitative measures and qualitative interviews. RESULTS: 18 participants provided quantitative data, and five participated in an interview. Competence, practice readiness and job satisfaction were relatively high. Self-efficacy remained essentially unchanged at all three time points. Average orientation length was 13 weeks, with 41.7% reporting their orientation was shorter than planned. At 6-months employment, 91.7% planned to stay in their current position for one year. Competence and Self-efficacy were associated at 3- and 6-months. Prior healthcare work experience was associated with higher competence at 3- and 6-months. Participants valued the experience of working with a preceptor and the supportive learning environment that allowed them to develop technical and professional nursing skills. CONCLUSION: These findings support dedicated education units as having a positive impact on new graduate nurse’s transition to practice.
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  Life Transitions of Children with Idiopathic Childhood Apraxia of Speech: A Qualitative Descriptive Study

  Meza, Patricia J. (2021-04-30)

  PURPOSE: The purpose of this qualitative descriptive study was to explore the experiences of emerging adults with idiopathic CAS, as they reflected on their transitions through childhood, adolescence, and young adulthood. SPECIFIC AIMS: Describe the experiences of emerging adults with idiopathic CAS as they reflect on developmental stages of childhood, adolescence, and young adulthood, including the situational experiences of transition occurring between elementary, middle, high school, and post-secondary education, training, or work. Identify strategies and the effectiveness of the strategies utilized by emerging adults with idiopathic CAS to manage experiences during different developmental stages and situational experiences of transition occurring between elementary, middle, high school, and post-secondary education, training, or work. FRAMEWORK: Meleis’ Transitions Theory. DESIGN: A qualitative descriptive design with purposive sampling was used. Data was analyzed using thematic analysis. RESULTS: Findings support the use of Transitions Theory. Three major themes were identified: The Child’s Environment, Implications of CAS, and Strategies. The school environment contributed to many implications for children. Older children were able to develop strategies to overcome challenges. In the school setting, children did not access nurses for concerns related to their CAS. CONCLUSIONS: CAS creates many challenges for children. Emerging adults with CAS report that environments in which people are knowledgeable, patient, understanding, accepting, and supportive help them express themselves freely despite their speech impairment. The nurse’s role in supporting children with CAS during grade school is untapped as they were largely invisible to the children as a potential resource for anything other than an injury or illness. To better facilitate supportive environments in which children with CAS can flourish, nursing assessment and interventions are needed.
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  Childhood Asthma: Contextual Influences Affecting Family Management

  Dunn, Melissa A. (2021-04-15)

  Purpose: The purpose of this study was to explore the way(s) in which family management of childhood asthma is affected by contextual influences as described in the Family Management Style Framework (FMSF) and to explore additional factors that affect family asthma management. Specific Aims: The specific aims of this study were 1) to describe the everyday experiences of childhood asthma management within families, 2) to explore the way(s) in which family management of childhood asthma is affected by contextual influences (social network, care providers & systems and resources) as described in the FMSF, and 3) to explore additional sociocultural factors (supported by the literature but not currently described in the FMSF) that affect asthma management in families. Framework: The Family Management Style Framework guided this study. Design: A qualitative descriptive design was used to gather data from a purposive sample of female primary caregivers. Demographic data were collected, and individual interviews were conducted using a flexible interview guide. Results: The findings support the contextual influences as described in the FMSF. An additional three contextual themes were identified: environment, emerging threats to health and work-life conditions. The themes are interrelated demonstrating the complexity of asthma management. Conclusion: Family management of asthma is challenging and complex. The findings move towards understanding the connection between family asthma management and the social determinants of health. Nurses can support families managing childhood asthma by considering each of the contextual influences when planning interventions and working on policy initiatives that support the health of children with asthma.
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  Eastern Woodlands Native Perspectives and Type 2 Diabetes: A Qualitative Study

  Sadlon, Penni P. (2020-08-14)

  Purpose: This qualitative descriptive study was undertaken to describe Eastern Woodlands Native adult perspectives, health care beliefs and type 2 diabetes management experiences. Specific Aims: The specific aims were to 1) explore and describe perceptions of type 2 diabetes among Eastern Woodland Native adults and how they relate to their understandings about the cause and treatment approaches to the disease, 2) describe how family, friends, and community intersect with type 2 diabetes management, 3) describe relationships with health care providers and 4) determine resources that would help diabetes-self management within their community. Framework: The PEN-3 Model by Airhihenbuwa was the initial framework used for the study. Methods: A qualitative descriptive design with maximum variation and snowball sampling was used and data was analyzed using qualitative content analysis. Results: The overarching theme of Together We Can Return To Balance comprised five sub-themes: Coming to Know Life Paths with T2DM, Negotiating My Way Forward, Making Important Connections, Acknowledging the Imbalance, and Sticking Closer to Mother Earth illustrating physical, spiritual, and environmental health factors influencing DSM capacities. Conclusion: Native perspectives should be viewed as a crucial contextual variation for type 2 diabetes care when developing DSMES and for improving DSM capacities in these populations.
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  A Video Intervention Targeting Opioid Disposal After General Surgery: A Feasibility Study

  Lewis, Joanne (2020-05-15)

  PURPOSE: The purpose of this feasibility study was to explore the use of an online video intervention to prepare surgical patients to properly dispose of unused opioids. SPECIFIC AIMS: Describe the feasibility of recruiting, enrolling, randomizing and retaining participants who recently had a general surgery into the study. Describe the differences in opioid disposal by age, sex, education, and type of surgery for the entire sample and by treatment assignment. Describe the preliminary change in knowledge, behavioral beliefs, normative beliefs and disposal of opioids from baseline to post-intervention by group. Describe the relationship between social desirability and behavioral beliefs, normative beliefs and disposal of opioids. FRAMEWORK: The Theory of Reasoned Action was used to guide both the intervention and the measures. DESIGN: This study used a randomized controlled feasibility study to explore a novel video intervention to teach safe storage and disposal of unused opioids after general surgery. RESULTS: A total of 40 participants were enrolled in the study, average age was 44.7 (range 21-75 years), most were White, educated and employed. Recruitment took 11 weeks and the retention rate was excellent at 85%. Differences in opioid disposal was not significantly different by age, sex, education or type of surgery. The video intervention was positively received, but the majority (80%) still stored their pills unsecured. CONCLUSION: The results demonstrate that a video intervention addressing safe storage and disposal practices of unused opioids is feasible and more research is needed to determine efficacy in increasing rates of secure storage and disposal of unused opioid pills KEYWORDS: Opioids, opioid disposal, general surgery, video education
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  Situation Awareness in LPNs: a Pilot Study

  Picone, Meghan C. (2020-05-06)

  Purpose: The purpose of this pilot study was to describe situation awareness (SA) among licensed practical nurses (LPNs) working in direct patient care. Specific Aims: The specific aims for this study are 1) to examine SA scores, as measured by the Situation Awareness Global Assessment Technique (SAGAT), in LPNs working in direct patient care and compare to published data on SA in registered nurses (RNs), 2) to examine the relationship between SA scores and years of LPN experience, 3) to examine differences in SA scores by type of workplace setting and 4) to describe the relationship between levels of satisfaction with simulation, as measured by the Satisfaction with Simulation Experience Scale (SSES) and SA scores among LPNs. Framework: Situation Awareness Theory, as described by Endsley, was used as the framework for this study. Design: A cross-sectional, descriptive design using the Situation Awareness Global Assessment Technique was used to gather data from a convenience sample of LPNs. Results: LPNs (N=24) participated in the study and achieved an average SAGAT score of 72.6%. There were no differences in scores between those LPNs enrolled in an RN program and those who were not enrolled. Individual scores on the SAGAT were comparable or better than scores in a similar study of RNs. Conclusion: LPNs in this study demonstrated adequate situation awareness. Key Words: Situation awareness, licensed practical nurse, patient deterioration, clinical simulation
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  Feasibility of an Online Cognitive Behavioral Therapy Program to Improve Insomnia, Mood, and Quality of Life in Bereaved Adults Ages 55 and Older

  Godzik, Cassandra (2020-04-13)

  Objective: To determine the feasibility of an online cognitive behavioral therapy for insomnia (CBT-I) in bereaved older adults. Participants: The study participants include adults aged 55 and older (N = 30) that lost a loved one within the past five years and are currently experiencing symptoms of insomnia. Methods: This study used an experimental design and was guided by the Transitions Theory developed by Meleis. Descriptive statistics and t-tests were used to measure changes within and between groups. Experimental arm had the CBT-I online treatment and the control arm had attention controlled online tasks. Intervention fidelity was measured. Results: The online CBT-I intervention is a feasible intervention for bereaved older adults with insomnia. High retention rates were shown in both groups, and both groups’ insomnia and mood symptoms improved at post- study measurement. There were no statistically significant differences seen in any measure between groups. Conclusions: Transitions in older adult life includes loss of friends and family as well as development of sleep issues. The Transitions Theory is useful for informing the design of behavioral interventions in this older population. Further research is needed to understand how sleep can be improved by cost effective online interventions that might not include solely CBT-I.
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  Paving the Way: A Grounded Theory of Discovery and Decision-Making for Persons Diagnosed with the CDH1 Marker

  Hersperger, Cheryl L. (2019-11-01)

  Purpose: To understand the process of discovery and decision-making for adults with the CDH1 marker for hereditary diffuse gastric cancer (HDGC) and inherited breast cancer. Participants and Setting: Purposeful sampling included 20 participants; 17 adults (11 women and 6 men, ages 23–77) recruited through the No Stomach for Cancer organization; six participants were interviewed two times; with three healthcare providers also interviewed. Nineteen interviews were by telephone; one was in person. Methodological Approach: Grounded theory with constant comparison. Findings: The person diagnosed with the genetic marker CDH1 undergoes the decision-making process of Paving the way as they address this healthcare challenge. Paving the way explains the entry points for learning the risk, discerning testing for confirmation, choosing iterative individual cycles of surveillance, surgery, and ongoing adjustments postoperatively while normalizing to live longer. Implications for Nursing: Understanding the process of Paving the way explains and describes the nine key factors for decision-making and predicts the timing for nursing interventions for both post-genetic testing and pre- and postoperative assessment and planning. Knowledge Translation: Advocacy for the self and family is key to Paving the Way. Nursing has an opportunity to develop and expand the roles for navigator and counselor in the area of genetic testing. Patients undergoing PTG have chronic healthcare needs. Family implications for genetic testing require assessment beyond the individual.
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  Reluctance of Adolescents with Cerebral Palsy to Participate in an Online Intervention on Self-management: Lessons Learned from a Randomized Control Trial

  Thompson, Cynthia T. (2018-12-01)

  Purpose: Assess the effectiveness of an online intervention to encourage self-management in adolescents with cerebral palsy (CP). Specific Aims: (a) assess effectiveness of an online intervention to promote readiness for self-management in adolescents with CP, (b) describe health literacy and associations with readiness to assume self-management, and (c) evaluate adolescents’ exposure to the online intervention. Hypotheses: (a) intervention subjects would demonstrate improvement in self-management, and (b) subjects with higher health literacy would demonstrate higher self-management capabilities. Framework: Transtheoretical Model of Health Behavior Change Design: Randomized control trial, performed in a multidisciplinary CP clinic at a university based children’s hospital. Instruments used: (a) Transition Readiness Assessment Questionnaire (TRAQ) and (b) the Health Literacy Skills Instrument-SF (HLSI). Due to low engagement, the study terminated early. Intervention subjects were interviewed to assess their limited engagement. Results: Seventy-five percent of subjects demonstrated inadequate HL. Mean baseline TRAQ score (n=24) was 2.71 (SE = .24). Positive associations were found between TRAQ and age (.47, p = .00) and TRAQ and HL (.48, p = .00). Conclusion: Failure to engage with the intervention appeared to be related to: (a) low HL, (b) low TRAQ scores (indicating subjects in contemplation stage) (c) inconsistency between subjects’ preference for learning and delivery of information, and (d) low motivation for self directed learning. Online interventions should be easy to use and include learning preferences. Lessons learned will inform future development of interventions for this population.
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  Engagement in Family Screening for Hypertrophic Cardiomyopathy

  Glowny, Michelle G. (2018-12-01)

  Background: Despite consensus guidelines, only about half of at-risk relatives in families with Hypertrophic Cardiomyopathy (HCM) undergo clinical screening and even fewer undergo predictive genetic testing, leaving those unscreened at risk for sudden cardiac death. The use of qualitative inquiry to examine family communication and complex factors influencing uptake of screening may inform interventions to increase uptake and prevent sudden cardiac death. Purpose: The purpose of this study was to describe the engagement of at-risk relatives in family screening for HCM. Specific Aims: The specific aims were to (1) Describe the experience of communication of genetic risk of HCM in families with a causative variant for HCM; (2) Use the Theory of Engagement to identify facilitators and barriers to family screening in families with a causative variant for HCM; and (3) Identify strategies to increase uptake of clinical screening and predictive genetic testing in families with a causative variant for HCM. Framework: The Theory of Engagement, adapted from McAllister, was used as an initial framework for the study. Methods: A qualitative descriptive design with purposive and snowball sampling was used and data were analyzed using qualitative content analysis. Results: The overarching theme of Bringing Genetic Risk to the Foreground was comprised of three major themes: Cues to Action, Preferences for Knowledge and Gateways to Screening, reflecting factors that affect engagement with genetic risk and family screening throughout the lifespan. Conclusions: Integrated longitudinal care and access to genetic specialists are needed for patients and families with a causative variant for HCM.
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  The Role of Primary Care Nurses in Addressing Unmet Social Needs

  Natale, Susan (2018-08-22)

  PURPOSE The purpose of this study was to explore how primary care registered nurses address unmet social needs in patients. SPECIFIC AIMS Explore how RNs in a safety-net, primary care setting develop an awareness of and address patient's unmet social needs. Describe how information about unmet social needs are integrated into nursing assessment and intervention activities, and are shared with other members of the health care team. Describe the challenges primary care RNs face when addressing unmet social needs. FRAMEWORK Critical caring theory provided the framework for this study. DESIGN This study used a descriptive, qualitative design. Semi-structured interviews were conducted with seventeen nurses working in 11 different safety-net primary care clinics within a hospital-based system. RESULTS Three major themes emerged. Key findings included the importance of the nurse-patient relationship, the establishment of trust, and a caring, nonjudgmental approach to patients with unmet social needs. Nurses used knowledge of unmet needs to coordinate patient care, provide social support, and work collaboratively with care team members to refer patients to resources within the health care system and in the community. CONCLUSION Unmet social needs contribute to adverse health outcomes, and addressing social and medical needs is critical to eliminating health inequities and reducing health care costs. In this study, primary care nurses described relationships with patients that allowed for the sharing of sensitive information, leading the nurse to identify and address unmet social needs that could impact patient health.

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