Promoting Family Engagement in the ICU: Experience From a National Collaborative of 63 ICUs.

OBJECTIVES: As part of an improvement program targeting ICU, a national collaborative was launched to help hospitals implement patient- and family-centered care engagement initiatives. DESIGN: Ten-month quality improvement collaborative. SETTING: Guided by a national patient and family advisory group, participating teams implemented an individual project including open visitation; integrating families on rounds; establishing a patient and family advisory committee; using patient and family diaries, among others. SUBJECTS: Sixty-three adult and PICU teams from both academic and community hospitals in 34 states participated. INTERVENTIONS: Monthly team calls, quarterly webinars, newsletters, an online eCommunity, and team reporting assignments were used to facilitate project implementation. MEASUREMENTS AND MAIN RESULTS: The Family Satisfaction with Care in the ICU 24 was used to assess family satisfaction. Clinician perceptions were assessed with the Institute for Patient- and Family-Centered Care Self-Assessment Inventory. Thematic analysis was used to explore narrative data captured from team reports of project barriers, facilitators, and the experience of participating in the collaborative. A total of 2,530 family member and 3,999 clinician surveys were completed. Postimplementation, family members reported statistically significant increases in overall family satisfaction, satisfaction with decision-making, and satisfaction with quality of care (Family Satisfaction with Care in the ICU mean score change range 0.83-1.24; p ≤ 0.027). Clinicians reported that opportunities for families to participate as members of the care team increased. Major barriers included lack of buy-in and ability to promote change in the clinical setting, managing the workload of implementation, and funding to support initiatives. CONCLUSIONS: A national collaborative format was useful to assist ICU teams to implement patient- and family-engagement initiatives. Enlisting stakeholder support, engaging unit-based champions, and highlighting benefits of family engagement can help ICU teams to promote family member involvement and engagement.

Pain Management in the Pediatric Palliative Care Population.

PURPOSE: The purpose of this integrative review was to identify, review, synthesize, and analyze the current literature related to pain management in the pediatric palliative care population from infancy through adolescence. METHODS: The literature was searched for the terms palliative, pediatric, and pain in PubMed, PsycINFO, Cumulative Index to Nursing and Allied HeALTH LITERATUre (CINAHL) Complete, and Google Scholar. The search was limited to papers in English that had been published from January 1, 2005, to December 31, 2016. RESULTS: These searches resulted in 918 articles, of which 29 met inclusion criteria. These 29 articles were reviewed and reported. Four broad themes emerged: patient and family experience, pain assessment, pharmacological pain management, and nonpharmaceutical interventions. CONCLUSIONS: Gaps in current research have been identified, such as investigating pediatric pain scales for the palliative care population and new complementary and alternative medical therapy and other interventions. More research is needed to bring innovative pain management interventions to the attention of pediatric caregivers. CLINICAL RELEVANCE: A better understanding of current research on pain in the pediatric palliative care population can improve patient care and lead to better research in this specialty field.

An Evolutionary Concept Analysis of Compassion Fatigue.

PURPOSE: The purpose of this article is to fill the need for an updated concept analysis of compassion fatigue. METHODS: This review used Rodgers' Evolutionary Model to direct the analysis of 25 papers published between 2005 and 2015. This review focused strictly on healthcare providers in the formal healthcare setting. CONCLUSIONS: The authors provided an analysis of the evolution of compassion fatigue and identified surrogate terms, attributes and defining characteristics, and antecedents and consequences of the term, true to Rodgers' Evolutionary Model. Related terms are also discussed and a brief case model is provided. CLINICAL RELEVANCE: A better understanding of compassion fatigue will allow researchers and clinicians to identify its causes, prevention, and treatment. This could impact the rate at which healthcare providers leave clinical practice and their ability to compassionately engage with patients.

Living With Genetic Vulnerability: a Life Course Perspective.

This is the second article of a two part series about utilizing the life course perspective (LCP) in genetic counseling. Secondary data analysis was conducted on a grounded theory, longitudinal study which provided a wide focus on living with hereditary breast and ovarian cancer (HBOC) risk. The aim of this analysis was to explore the longitudinal data for both the temporal and social context of living with BRCA mutation genetic test results. Sixteen women from two previous studies were interviewed on multiple occasions over an 8 year time period. The LCP was used to direct a thematic analysis of the data. Families experience the consequences of knowing they carry a BRCA1 or BRCA2 gene mutation long after the initial diagnosis. These women's experiences across time reflect the concepts of the LCP and show how life is changed when families know they live with a genetic vulnerability to an adult-onset and potentially life-threatening disease. Different emphases on concepts from the LCP were evident across the different age groups. For example, the group of 40-50 year old women emphasized the concept of linked lives, those in their 30's focused on human agency and women in their 20's were more focused on timing of events. This study helps give direction to healthcare providers counseling women living with a BRCA mutation.

The Life Course Perspective: a Guide for Genetic Counselors.

This is the first article in a two part series about utilizing the life course perspective (LCP) in genetic counseling. LCP can be a useful tool for genetic counselors when counseling people with a known genetic mutation. Previous theories such as Protection Motivation Theory (PMT) and Common Sense Model of Self-Regulation (CSMSR) examine current reactions to a positive genetic test result. LCP extends beyond the current time to explore temporal and contextual elements of the experience. A review of research revealed, LCP has been used to study the perspective of caregivers of people with Alzheimer's disease, referral for a family history of breast cancer, Mexican American caregivers of older adult, social class and cancer incidence and cancer and the sense of mastery. Incorporating LCP into a study explaining the experiences of people living with a positive test result for a genetic mutation such as the BRCA mutation provides a comprehensive exploration of this experience.

Understanding Compassion Fatigue in Healthcare Providers: A Review of Current Literature.

PURPOSE: The purpose of this integrative review was to identify, review, synthesize, and analyze the existing literature addressing compassion fatigue (CF) in healthcare providers (HCPs), with careful attention to provider role and practice area. CF needs to be better understood to identify, prevent, and treat it before it becomes problematic for HCPs. CF is representative of the cost of caring and results in physical, emotional, and psychological symptoms that contribute to the decision of the HCP to leave the profession. METHODS: A literature search, guided by search terms related to CF, was conducted using the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed encompassing publications between 2005 and 2015. The selected literature was then systemically reviewed and synthesized for this narrative review. RESULTS: These preliminary searches resulted in 307 articles, of which 43 met inclusion criteria. These 43 articles were reviewed and reported that CF and related concepts (CF and RCs) were pervasive and affected a wide variety of HCPs working in many clinical settings; however, advanced practice registered nurses (APRNs), respiratory therapists, physical therapists, and occupational therapists were not well represented. The literature provided information regarding prevalence, risk factors, prevention measures, and symptoms of CF and RCs. CONCLUSIONS: While CF and RCs have been explored in a myriad of medical professionals, there is little published regarding APRNs, respiratory therapists, physical therapists, and occupational therapists. More research is needed to evaluate for the presence of CF in HCPs working in a variety of settings and the degree to which it affects personal and professional well-being, including interactions with patients, patient outcomes, and the quality of professional life. Additionally, as the definition and use of the term compassion fatigue has evolved, a need for a well-developed concept analysis has also become evident. CLINICAL RELEVANCE: A better understanding of current research on CF through narrative review, development of a concept analysis, and further exploration of its impact on HCPs has the potential to improve the overall well-being of HCPs, ultimately leading to better patient care and retention within the profession.

Experiences of Military Spouses of Veterans With Combat-Related Posttraumatic Stress Disorder.

PURPOSE: To explore the experiences of military spouses living with veterans with combat-related posttraumatic stress disorder (PTSD). DESIGN: Husserlian phenomenology was chosen as the theoretical framework because it allowed a deeper understanding of the unfolding of the spouses' daily experience. METHODS: A purposive sample of 14 spouses living with veterans with symptoms of PTSD participated in unstructured interviews. Data were analyzed using a modification of the Colaizzi phenomenological method. FINDINGS: Spouses recognized that the veteran was no longer the same person, with life becoming one of living with the unpredictability of PTSD. The spouses bore the burden to maintain normalcy in the family and eventually created a new life. CONCLUSIONS: Military spouses endure psychological stress and strain, while living with a veteran with PTSD. There is a need for more programs to support the resilience of military spouses. CLINICAL RELEVANCE: Life for military spouses of veterans with PTSD is ever-changing and unpredictable. Practitioners need to be aware of the stress that spouses experience and develop programs and interventions that bolster the resilience of military families.

Determinants of Obesity in the Hispanic Preschool Population: An Integrative Review.

OBJECTIVE(S): The purpose of this integrative review was to identify factors associated with obesity in Hispanic preschool children. DESIGN AND SAMPLE: Integrative research review based on strategies described by Whittemore and Knafl. Thirty-five research reports using qualitative and/or quantitative methods and including a majority of participants (parents or preschool-aged children) of Hispanic ethnicity. MEASURES: Data were analyzed using the Matrix Method. RESULTS: Decreased physical activity of the child and increased maternal body mass index were found as contributors to obesity in the preschool, Hispanic population. The relationship between maternal feeding practices and beliefs, food choices and childhood obesity are widely studied with little consistency in findings across studies. CONCLUSIONS: Public health nurses can work with communities to promote physical activity and safe outdoor places for exercise. In addition, they can advocate for the availability of healthy food choices in neighborhood schools. Maternal feeding practices, acculturation, and the child's environment require further research.

Adolescent Perspectives Following Ostomy Surgery: A Grounded Theory Study.

PURPOSE: This purpose of this study was to provide a theoretical account of how adolescents aged 13 to 18 years process the experience of having an ostomy. DESIGN: Qualitative study using grounded theory design. SUBJECTS AND SETTING: The sample comprised of 12 English-speaking adolescents aged 13-18 years: 10 with an ostomy and 2 with medical management of their disease. METHODS: Respondents completed audio-recorded interviews that were transcribed verbatim. Data were analyzed using the constant comparative method until data saturation occurred. Dedoose, a Web-based qualitative methods management tool, was used to capture major themes arising from the data. RESULTS: Study results indicate that for adolescents between 13 and 18 years of age, processing the experience of having an ostomy includes concepts of the "physical self" and "social self" with the goal of "normalizing." Subcategories of physical self include (a) changing reality, (b) learning, and (c) adapting. Subcategories of social self include (a) reentering and (b) disclosing. CONCLUSIONS: This study sheds light on how adolescents process the experience of having an ostomy and how health care providers can assist adolescents to move through the process to get back to their desired "normal" state. Health care providers can facilitate the adolescent through the ostomy experience by being proactive in conversations not only about care issues but also about school and family concerns and spirituality. Further research is needed in understanding how parents process their adolescents' ostomy surgery experience and how spirituality assists adolescents in coping and adjustment with body-altering events.

Rural Families' Process of Re-Forming Environmental Health Risk Messages.

PURPOSE: This study was undertaken to explore how rural low-income families with children process health information following a nurse-delivered intervention designed to reduce environmental risks in their homes. DESIGN AND METHOD: Grounded theory methodology with a constructivist approach was used to conduct the study. Semistructured interviews of 10 primary child caregivers in rural low-income families who had participated in an environmental risk reduction intervention were completed from 2009 to 2011. Data were categorized using comparative analysis, theoretical sampling, and coding techniques. FINDINGS: The three phases-(a) visiting my perception, (b) weighing the evidence, and (c) making a new meaning-explained the core process of the grounded theory of Re-Forming the Risk Message. CONCLUSIONS: Rural low-income families at risk for environmental hazards in their homes determined what health information and needed subsequent actions regarding their risks were important by changing the meanings of nurse-delivered messages. CLINICAL RELEVANCE: Nursing interventions designed to improve health behaviors and reduce risks are often based on stage theories that explain how change occurs through steps leading to positive actions through delivery of risk messages. However, the risk message delivered in an intervention designed to engage action is not always the risk message people decide to use. To understand whether people are ready to engage in positive behaviors through interventions, or if needed changes to the information must be made, nurses need to discover and explore reasons for the re-formed risk messages.

Critical social theory approach to disclosure of genomic incidental findings.

Technology has expanded genomic research and the complexity of extracted gene-related information. Health-related genomic incidental findings pose new dilemmas for nurse researchers regarding the ethical application of disclosure to participants. Consequently, informed consent specific to incidental findings is recommended. Critical Social Theory is used as a guide in recognition of the changing meaning of informed consent and to serve as a framework to inform nursing of the ethical application of disclosure consent in genomic nursing research practices.

Parental Decision-Making for Surgery and Anesthesia in Young Children.

Millions of young children undergo surgery and anesthesia each year, yet there is a lack of scientific consensus about the safety of anesthesia exposure for the developing brain. Also poorly understood is parental anesthesia-related decision-making and how neurotoxicity information influences their choices. The theoretical model of parental decision-making generated in this research explicates this process. Interviews with 24 mothers yielded a theoretical framework based on their narratives developed using a qualitative grounded theory analysis. Five major themes emerged from these interviews: emotional processing, cognitive processing, relationships as resources, the mother/child dyad, and the health care context. Mothers described a non-linear, iterative process; they moved fluidly through emotional and cognitive processing supported by relationships as resources and influenced by the health care context. A key element was the subtheme of the medical translator, an individual who provided context and information. The mother/child dyad grounded the model in the relationship with the child.

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.

Nursing student experiences in turmoil: A year of the pandemic and social strife during final clinical rotations.

BACKGROUND: The duration and magnitude of the coronavirus (COVID-19) posed unique challenges for nursing students, whose education was altered because of the pandemic. PURPOSE: To explore the perceptions and experiences of nursing students whose clinical rotations were abruptly interrupted by COVID-19's initial surge in the United States. METHODS: This qualitative study was conducted at a midwestern, academic medical center to elicit senior nursing students' experiences. An online survey was administered with eight open-ended questions asking about: initial impressions of the pandemic; experiences of being a senior nursing student; sources of stress and coping mechanisms; preparing to work as a registered nurse; and views on the nursing profession. RESULTS: Among the 26 students who completed the survey, the majority were female (92%), aged 28 ∓ 4.1 years. A total of 18 subcategories emerged with four main themes identified as: a) breakdown of normal systems, b) feeling alone and the inability to escape, c) protective factors/adaptability, and d) role identify and formation. CONCLUSIONS: Findings indicate students implemented a variety of strategies while adapting to the abrupt interruption of in-person clinical rotations, mandated restrictions, and social unrest. The cascading themes illustrate the enormity of sudden changes and their significant impact on daily life.

International facilitators and barriers to family engagement in the ICU: Results of a qualitative analysis.

PURPOSE: Patient and family engagement in the intensive care unit (ICU) is beneficial for patient recovery from critical illness. Yet limited information exists on facilitators and barriers from an international perspective. MATERIALS AND METHODS: As part of ongoing work from a task force of the World Federation of Intensive and Critical Care (WFICC) exploring international practices of family engagement from a survey of 345 healthcare clinicians from 43 countries, qualitative analysis was conducted for two open ended questions: 1) What are strategies that you and your colleagues have found helpful to promote patient and family-centered care/engagement in the ICU? and 2) What are potential barriers have you encountered in implementing patient and family-centered care/engagement in the ICU? Thematic content analysis was used to code data to identify major themes of facilitators and barriers of family engagement. RESULTS: A total of 257 comments were provided from intensivist physicians (n = 107, 31.4%), ICU directors (n = 74, 21.7%), ICU nurse managers (n = 33, 9.7%), and others including fellows, nurse specialists and consultant anesthesiologists. Major themes that emerged related to team engagement, family engagement, communication, leadership, relationships, and structured process. CONCLUSIONS: Highlighting strategies can assist ICU clinicians globally to adopt and promote best practices for family engagement.

Supporting Primary Care Access and Use among Homeless Persons.

With the implementation of the Affordable Care Act (ACA), many homeless persons who previously lacked health insurance gained medical coverage. This paper describes the experiences of homeless persons in accessing and using primary care services, post-implementation of the ACA. Twenty-six semi-structured interviews were completed with homeless persons and primary care providers/staff. Via thematic analysis, themes were identified, categorized by: factors which influence primary care access and use patterns, and strategies to promote consistent primary care use. Maintaining insurance and leveraging systems-based strategies to support primary care access and use may address health disparities and promote health equity.

Palliative Care in Heart Transplantation.

The purpose of this article is to describe palliative care incorporation within the care of heart transplant patients. Palliative care is a holistic approach to care that includes symptom management and goal setting to improve patients' quality of life. Palliative care is designed to be used with patients who have chronic illness that impacts quality of life and should be incorporated early in the disease. All providers have a responsibility to be knowledgeable in palliative care approaches and to know when to refer a patient for specialty palliative care services. This article will describe palliative care, research study findings, and current professional guideline recommendations for patients. The article also describes challenges and barriers to the use of palliative care in heart transplant patients and strategies to address these challenges and barriers.

Life trajectories, genetic testing, and risk reduction decisions in 18-39 year old women at risk for hereditary breast and ovarian cancer.

This qualitative study identified four life trajectories that influenced the decision in young women to have genetic testing for mutations in BRCA1/2 and subsequent risk reduction decisions after receiving a positive mutation result. Fifty nine women between the ages of 18-39 years were interviewed in this grounded theory study, 44 of those tested were found to have a mutation in either BRCA1 or BRCA2. Of those with a mutation, 23 had no history of cancer and 21 had a breast cancer diagnosis. Analysis of the 44 participants tested found that risk reducing decisions were related to the life trajectories that preceded genetic testing. These life trajectories included: 1) Long-standing awareness of breast cancer in the family, 2) Loss of one's mother to breast cancer at a young age, 3) Expression of concern by a health care provider, and 4) Personal diagnosis of breast cancer. Understanding possible influences behind decision making for genetic testing and risk reduction in young women may assist health care providers in offering age appropriate guidance and support.

The effect of BRCA gene testing on family relationships: A thematic analysis of qualitative interviews.

Discovery of mutations in the breast and ovarian cancer susceptibility genes BRCA1 and BRCA2 can have emotional consequences for both the tested individual and his or her relatives. This secondary analysis study investigated how BRCA testing impacts family dynamics and relationships. For the original study, a grounded theory inquiry, participants were recruited from a hereditary breast/ovarian cancer syndrome support website and open-ended interviews were performed asking about individual and family experiences after BRCA testing. All 12 participants whose interviews were included in the secondary analysis had a BRCA mutation. For the secondary analysis, thematic analysis was conducted and revealed three main themes characterizing the effect of BRCA testing on family relationships: 1. That the first in the family to have testing or seek genetic counseling takes on a special family role that can be difficult for them; 2. That discussions in the family often change; and 3. That individuals may feel more or less connected to certain family members. These changes seemed to relate to family cancer history, relationships, coping strategies, communication patterns, and mutation status. Genetic counselors might find it useful to explore these issues in order to prepare clients before BRCA testing and to support them through shifts in family dynamics after disclosure of results.