Urban, Low-Income, African American Well-Child Care: Comparison of Parent and Healthcare Provider Experiences and Expectations.

OBJECTIVES: Urban, low-income, African American children and parents report lower quality primary care and face negative social determinants of health. High-quality well-child care is critical for this population. The purpose of this qualitative study was to compare and contrast parent and health care provider experiences of well-child care for urban, low-income, African American families to better understand the complex factors involved in care quality and health outcomes. METHODS: Two data sets were analyzed using conventional content analysis, parent focus group data, and provider interviews. After analysis, results were sorted into similar categories, and convergence coding was completed to identify areas of agreement, partial agreement, dissonance, and silence. RESULTS: Thirty-five parents took part in four focus groups, and nine providers were interviewed. Following convergence coding, five categories and 31 subcategories were identified. The five categories included: social determinants of health, sources of advice and support, challenges with the healthcare system, parent-provider relationships, and anticipatory guidance topics. CONCLUSIONS FOR PRACTICE: Triangulation demonstrated convergence between parents and providers understanding of the concepts and functions of well-child care, however the prominence and meaning varied within each category and sub-category. The variance in agreement, areas of silence, and dissonance shed light on why the population reports lower overall quality primary care.

Urban, Low-Income, African American Parents' Experiences and Expectations of Well-Child Care.

PURPOSE: Well-child care is the foundation of pediatric health promotion and disease prevention. Primary care quality is lower for low-income and African American children compared to white children, and social determinants have an increasingly acknowledged impact on child health. Ensuring that high-quality well-child care fulfills its potential to mitigate the negative effects of social determinants on African American children is imperative. This study provides an understanding of urban, low-income, African American well-child care experiences and expectations. DESIGN AND METHODS: A qualitative, focus group method was used. A purposive, volunteer sample of low-income, African American parents with children birth to age five was recruited from St. Louis and Milwaukee. Focus groups were held in convenient, community sites. Data was audio-digitally recorded. Transcribed data were coded and analyzed through inductive content analysis. RESULTS: Thirty-five caregivers, 86% females, participated in four focus groups. Categories (and sub-categories) identified include: Community factors (We want better schools, It's getting more rough where I live); Sources of parenting advice (Google it, Call your parent, Older remedies); System challenges (Cost, Frequent new faces, Politics); Challenges with providers (Couldn't help me, Missed something important, Treated differently, Are you really listening?); Anticipatory guidance (Breastfeeding, Discipline, Vaccines, Development); and What parents desire (Know them, trust). CONCLUSIONS: This study reveals the contexts that give rise to health care disparities and provides insight into parent's healthcare behaviors. PRACTICE IMPLICATIONS: Results offer providers guidance in providing well-child care for this population to improve pediatric care quality and child health.

"Can you tell me why you made that choice?": A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant.

BACKGROUND: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature. AIM: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care. DESIGN: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices® Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention. SETTINGS/PARTICIPANTS: A total of 10 adolescent and young adult patients (aged 14-27 years) undergoing bone marrow transplant at an academic Midwest children's hospital were involved in the study. RESULTS: Influences on participants' decisions were consideration for family, quality of life, and awareness of self. Desire to avoid suffering and maintain an acceptable quality of life was often in competition with participant's concern over the perceived negative impact of discontinuing treatment on their families. CONCLUSION: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.

Physicians' Perspectives on Adolescent and Young Adult Advance Care Planning The Fallacy of Informed Decision Making.

Advance care planning (ACP) is a process that seeks to elicit patients' goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades-when the treatment of one organ system creates complications in another system that needs to be treated-and a creation of a "new normal" following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents' autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common.

Theory and Theorizing in Nursing Science: Commentary from the Nursing Research Special Issue Editorial Team.

BACKGROUND: Articles from three landmark symposia on theory for nursing-published in Nursing Research in 1968-1969-served as a key underpinning for the development of nursing as an academic discipline. The current special issue on Theory and Theorizing in Nursing Science celebrates the 50th anniversary of publication of these seminal works in nursing theory. OBJECTIVE: The purpose of this commentary is to consider the future of nursing theory development in light of articles published in the anniversary issue. APPROACH: The Editorial Team for the special issue identified core questions about continued nursing theory development, as related to the nursing metaparadigm, practice theory, big data, and doctoral education. Using a dialogue format, the editors discussed these core questions. DISCUSSION: The classic nursing metaparadigm (health, person, environment, nursing) was viewed as a continuing unifying element for the discipline but is in need of revision in today's scientific and practice climates. Practice theory and precision healthcare jointly arise from an emphasis on individualization. Big data and the methods of e-science are challenging the assumptions on which nursing theory development was originally based. Doctoral education for nursing scholarship requires changes to ensure that tomorrow's scholars are prepared to steward the discipline by advancing (not reifying) past approaches to nursing theory. CONCLUSION: Ongoing reexamination of theory is needed to clarify the domain of nursing, guide nursing science and practice, and direct and communicate the unique and essential contributions of nursing science to the broader health research effort and of nursing to healthcare.

Spasticity over time during acute rehabilitation: a study of patient and clinician scores.

AIMS: The aims of this study were to describe spasticity trajectories as a function of time, gender, and diagnosis and to explore the correspondence between patient and clinician scores of spasticity. BACKGROUND: Discrepancy between examiner assessment and patient rating of spasticity exists. Assessments that include the patient perspective are critical for patient safety. This mixed-method study provided patient descriptors of spasticity integrated with clinical scales. METHOD: Twenty-three participants provided spasticity descriptors and rated their spasticity based on Numeric Rating Scale (NRS) scores. A clinician evaluated spasticity daily using the Modified Ashworth Scale (MAS). This resulted in 1976 points of data for analysis. RESULTS: Spasticity was highly variable over time. The empirical correspondence between the clinician-rated MAS and the patient-rated NRS revealed that patient and examiner understanding of spasticity were diverged considerably. CONCLUSIONS: Clinical evaluation protocols should include patient reports on spasticity. Knowledge about patient word choice can enhance patient-provider communication.

Moral Agency, Moral Imagination, and Moral Community: Antidotes to Moral Distress.

Moral distress has been covered extensively in the nursing literature and increasingly in the literature of other health professions. Cases that cause nurses' moral distress that are mentioned most frequently are those concerned with prolonging the dying process. Given the standard of aggressive treatment that is typical in intensive care units (ICUs), much of the existing moral distress research focuses on the experiences of critical care nurses. However, moral distress does not automatically occur in all end-of-life circumstances, nor does every critical care nurse suffer its damaging effects. What are the practices of these nurses? What specifically do they do to navigate around or through the distressing situations? The nursing literature is lacking an answer to these questions. This article reports a study that used narrative analysis to explore the reported practices of experienced critical care nurses who are skilled at and comfortable working with families and physicians regarding the withdrawal of aggressive treatment. A major finding was that these nurses did not report experiencing the damaging effects of moral distress as described in the nursing literature. The verbal communication and stated practices relevant to this finding are organized under three major themes: (1) moral agency, (2) moral imagination, and (3) moral community. Further, a total of eight subthemes are identified. The practices that constitute these themes and subthemes are further detailed and discussed in this article. Understanding these practices can help mitigate critical care nurses' moral distress.

Characterization of the peripheral artery disease symptom experience.

Claudication is the most commonly recognized peripheral artery disease (PAD) symptom, but not the most prevalent. Only 7.5%-33% of patients report claudication as being part of their symptom experience. However, there is little evidence supporting atypical symptom reporting. The study purpose was to describe the full spectrum of symptoms experienced by older and younger individuals with PAD. Semistructured interviews were conducted with a purposive sample of 38 community-dwelling adults aged 49-83 years; transcripts were analyzed using content analysis. Six themes emerged: symptom descriptors (claudication and atypical), maintaining equilibrium, temporal fluctuations, the role of exercise, perceived impact on quality of life, and disease presence and treatment. Results suggest heavy reliance on claudication can result in mis- or under-diagnosis of PAD. Further research is needed to validate the correspondence of atypical symptoms with ischemic changes during exercise to broaden currently accepted symptom locations and descriptors associated with PAD.

Advancing adolescent maternal development: a grounded theory.

OBJECTIVES: This paper reports a substantive grounded theory called the theory of Advancing Adolescent Maternal Development. DESIGN: A grounded theory approach was used. SAMPLE: Thirty public health nurses working with adolescent clients in a state public health nurse home visiting program volunteered to participate in this study. RESULTS: The basic social psychological problem that emerged from the data was incomplete and at risk adolescent maternal development. Social support and public health nursing interventions are central in the problem resolution process which occurs in stages. CONCLUSIONS: Study results can be used to inform the nursing care of pregnant and parenting adolescents.

Use of seclusion: finding the voice of the patient to influence practice.

Seclusion for escalating behavior in psychiatric patients has been a controversial intervention over the past 3 decades. The current study investigated the experience of seclusion from the perspective of inpatient psychiatric patients in the mid-western United States. Twelve patients were interviewed about their experiences; the interviews were transcribed into a written text. A phenomenological method was used to analyze the text, and themes were generated. Three themes emerged: (a) Patient Hope for Respect and Open Communication described patients' desires for discussion about their individual problems before their behavior escalated; (b) Patient Emotional Response to the Seclusion Process described accelerating emotions such as anxiety and anger. Patients perceived disrespect from staff prior to and during seclusion; and (c) Patient Insight into Behavior and the Importance of Positive Coping Skills described the importance of debriefing with staff and learning positive coping skills. Further improved education for nurses is needed to help manage psychiatric patients, for it is the goal of the mental health profession to understand the reasons these seclusion episodes occur and to directly take the steps to eliminate the need for the seclusion process entirely.

App Design Features Important for Diabetes Self-management as Determined by the Self-Determination Theory on Motivation: Content Analysis of Survey Responses From Adults Requiring Insulin Therapy.

BACKGROUND: Using a diabetes app can improve glycemic control; however, the use of diabetes apps is low, possibly due to design issues that affect patient motivation. OBJECTIVE: This study aimed to describes how adults with diabetes requiring insulin perceive diabetes apps based on 3 key psychological needs (competence, autonomy, and connectivity) described by the Self-Determination Theory (SDT) on motivation. METHODS: This was a qualitative analysis of data collected during a crossover randomized laboratory trial (N=92) testing 2 diabetes apps. Data sources included (1) observations during app testing and (2) survey responses on desired app features. Guided by the SDT, coding categories included app functions that could address psychological needs for motivation in self-management: competence, autonomy, and connectivity. RESULTS: Patients described design features that addressed needs for competence, autonomy, and connectivity. To promote competence, electronic data recording and analysis should help patients track and understand blood glucose (BG) results necessary for planning behavior changes. To promote autonomy, BG trend analysis should empower patients to set safe and practical personalized behavioral goals based on time and the day of the week. To promote connectivity, app email or messaging function could share data reports and communicate with others on self-management advice. Additional themes that emerged are the top general app designs to promote positive user experience: patient-friendly; automatic features of data upload; voice recognition to eliminate typing data; alert or reminder on self-management activities; and app interactivity of a sound, message, or emoji change in response to keeping or not keeping BG in the target range. CONCLUSIONS: The application of the SDT was useful in identifying motivational app designs that address the psychological needs of competence, autonomy, and connectivity. User-centered design concepts, such as being patient-friendly, differ from the SDT because patients need a positive user experience (ie, a technology need). Patients want engaging diabetes apps that go beyond data input and output. Apps should be easy to use, provide personalized analysis reports, be interactive to affirm positive behaviors, facilitate data sharing, and support patient-clinician communication.

A family systems nursing intervention model for paediatric health crisis.

AIM: This article discusses the development of a family systems nursing intervention for clinical use in health crisis. BACKGROUND: Although studies in paediatric critical care provide evidence that family stress is an important clinical phenomenon, studies have demonstrated that few nurses have the requisite family intervention skills to provide family members with adequate support during crisis. In addition, few intervention studies that focus on provider-family relationships with the goal of reducing stress have been reported. This article contributes to the literature by redressing this lack. Data sources. The literature search supporting this project spanned from 1980 to 2009 and included searches from classic nursing theory, family theory and relevant nursing research specific to the design of the intervention reported. DISCUSSION: The goal of the intervention is to provide a theoretical and practical foundation for explicit action that enhances relationships with caregivers thereby supporting the integrity of the family and enhancing their coping abilities. The intervention, based on the Family Systems Model and the family's understandings of the situation, defines specific goals and desired outcomes to guide strategic actions. Discussion of the conceptual foundation, procedural development and an example of the protocol is provided. Implications for nursing. The intervention is designed for nurses with limited knowledge in family theory to aid them to better help families dealing with stress. CONCLUSION: The proposed intervention can be used to increase nurses' skills in family centred nursing care. Although designed for use in paediatric critical care, it can, with modifications, be used in other nursing specialty areas.

Photovoice in the Red River Basin of the north: a systematic evaluation of a community-academic partnership.

A community-academic partnership was formed in Minnesota's Red River Basin for a 1-year planning grant preceding a larger intervention to reduce pesticide exposure among children. Photovoice, developed by Dr. Caroline Wang, was used by mothers to document pathways to pesticide exposure for their children along with other health and safety concerns. An evaluation of the partnership was conducted for mothers, and for the research team of local stakeholders and academics. Surveys consisting of structured and open-ended questions elicited information on the perception of the process and short-term outcomes. Questions were created based on objectives of the Photovoice project, satisfaction, and principles of community-based participatory research (CBPR). A high percentage of study participants and researchers indicated that the objectives of the effort had been met, the principles of CBPR had been realized and they were satisfied with the benefits of participation. A need for more thorough planning was identified related to long-term dissemination of knowledge generated. The evaluation provides insight on the strengths and weaknesses of the project, demonstrates to team members and funders that formative and summative outcomes were met, and serves as a model for community-academic partnerships utilizing Photovoice as one CBPR method.

The experience of community-living men managing fecal incontinence.

PURPOSE: The purpose of this study was to investigate the lived experience of men managing fecal incontinence (FI). METHOD: A phenomenological method was used to investigate the experience of FI. Eleven men participated in unstructured interviews. Van Manen's approach was used for data analysis. RESULTS: The findings display men's experiences of living with FI through space, relationships, time and body. The essential theme generated from the analysis was "secret resignation." Resignation of having FI was the main coping strategy of the men in this study and was reflected in the limited approaches they used to manage their symptoms. The common reason of the resignation was considering FI normal for them and a consequence of aging. DISCUSSION AND CONCLUSION: The findings provide guidance to rehabilitation nurses to first inquire about the presence of FI, education men about its etiologies, and develop plans of care that address men's main concerns.

Long-Term Yoga and Aerobic/Strength Exercise Adherence in Older Women with Knee Osteoarthritis: A Mixed Methods Approach.

Hatha yoga (HY) and aerobic and strengthening exercise (ASE) programs are recommended for optimal management of osteoarthritis. However, evidence on long-term adherence to these programs and factors that influence it is lacking in older adults. The purposes of this study were to (1) describe and compare long-term HY and ASE adherence in community-dwelling older women with knee osteoarthritis 12 months post-HY/ASE intervention programs; (2) identify benefits and facilitators of, and barriers to, long-term adherence; and (3) examine other self-care interventions used after completing HY or ASE programs. Adherence was defined as following the prescribed HY/ASE program or incorporating the practice into daily habits. Five semistructured focus group interviews and 12 months of exercise diaries were obtained from 28 women (mean age 71.2 years). Long-term adherence to the prescribed HY or ASE regimen was relatively high, albeit adapted to individual needs, priorities, and preferences. Over the 12-month follow-up period, participants spent on average 3.5 days/3.1 hours per week on exercise. Most participants remained physically active by modifying their prescribed programs and integrating elements of the interventions into their own exercise regimens. Facilitators to long-term adherence were perceived benefits, having an exercise routine/habit, and program structure/instruction. Poor health status, lack of time, and exercise preferences were identified as barriers. Participants used a variety of self-care interventions including oral supplements and alternative diets for managing their osteoarthritis. This work suggests that exercise programs for osteoarthritis that incorporate individual preferences, flexible hours, and easy-to-follow instructions are most likely to result in long-term adherence.

Health education priorities: perspectives from women's voices.

The authors conducted a study to determine women's perceived health information needs in various geographic locations to plan health-related outreach in a Midwestern U.S. state. Eighty-seven women representing diverse communities in both urban and rural locations participated. Themes identified from transcripts of focus groups included confusion and information overload, concerns regarding lifestyle and specific health conditions, a lack of time for self care, factors influencing health-related behavior change, navigating the health system, and a need to ?make this system work for me.? The voices of these women contribute to the search for solutions to provide comprehensive, holistic women's health care in the U.S. and internationally.

Understanding Clinical Characteristics of Muscle Weakness.

ABSTRACT: BACKGROUND: Muscle weakness is a debilitating condition that can lead to frailty, falls, and functional decline. Muscle weakness is found across many diseases; therefore, understanding what constitutes this condition is paramount. The National Library of Medicine provides 2 definitions of muscle weakness, both from a disease perspective. These definitions are narrow and do not account for overlapping causes of muscle weakness. Nurses are holistic practitioners, so they need to understand the clinical characteristics of muscle weakness, regardless of underlying disease processes. METHODS: Secondary analysis of data from an earlier qualitative study. Using content analysis of transcripts of semistructured interviews with a multidisciplinary group of 12 experts in the management of muscle disorders, we identified characteristics of muscle weakness from the clinicians' perspectives. RESULTS: Muscle weakness has characteristics of debility, loss of function, and asymmetry. The characteristics of debility include lack of strength, atrophy, and fatigue. Muscle weakness does coexist with muscle tightness. CONCLUSIONS: The characteristics of muscle weakness identified in our study are markedly different from those included in National Library of Medicine definitions. As a condition, muscle weakness has both subjective and objective traits. Therefore, clinician assessment and patient input combined capture the comprehensive nature of muscle weakness. Nurses' awareness of what constitutes muscle weakness, regardless of diagnosis, is the first step in optimal management of this condition.

Narratives as Borders: Using an Adapted Narrative Approach to Understand the Retelling of the Physical Narratives of Trauma by Karen Women With Refugee Status Resettled in the United States.

The refugee narrative spans time, geography, and generations, enfolding the complexity of constructing identities through displacement and migration. Through adapted narrative analysis, we examined the physical narratives of war trauma which a sample of Karen refugee women constructed, as they claimed their experiences of war trauma and torture in interview discussions. We employed an adapted narrative method relevant to the analysis of field texts to interpret the remembering and retelling of trauma narratives. This method helped to elicit positional identities and physical/sensory memories that were prominent in women's experiences and to contextualized concurrently collected quantitative data. Accounts revealed key constructs relevant to the narrative function and orientation of the narratives: remembering childhood, being a mother, embodiment of trauma.

Navigating through incontinence: A qualitative systematic review and meta-aggregation of the experiences of family caregivers.

BACKGROUND: Community dwelling older adults who are care dependent are highly affected by incontinence, resulting in substantial informal caregiver burden. Understanding the experiences of these caregivers is needed to develop supportive programs that reduce caregiver burden and rates of institutionalization for care recipients. OBJECTIVES: This systematic review aimed to critically appraise and synthesize the qualitative literature on the perceptions, experiences, and consequences of informal caregivers managing incontinence in community dwelling older adults. DESIGN: A qualitative evidence synthesis using meta-aggregation. DATA SOURCES: CINAHL, Embase, Ovid Medline, PsycInfo, Scopus, and ProQuest Dissertations and Theses. REVIEW METHODS: A comprehensive search was conducted to identify qualitative studies of all designs, published in English from January 1970 to November 2020, reporting on the experiences of unpaid adult family members or friends providing care at home to an adult aged 60 or older with urinary and/or fecal incontinence. Screening, data extraction, and quality appraisal were conducted independently by two reviewers, with disagreements resolved by consensus with all team members. Joanna Briggs Institute (JBI) processes were used to assess study quality, and the dependability and credibility of both study findings and synthesized findings. All articles included met predetermined criteria. RESULTS: Database searches yielded 1165 references, of which 117 full-text documents were screened. Seven articles of moderate to high methodological quality met eligibility criteria and were included. Studies occurred in nine countries with 134 participants who were mostly female spouses of the care recipient. From these eligible studies, 49 findings were extracted with 35 equivocal or credible findings eligible for meta-aggregation. Findings were synthesized into the following four categories: 1) emotional responses, 2) physical, financial, and social consequences, 3) family roles and caregiver support, and 4) management and coping strategies. CONCLUSIONS: Informal caregivers experience many physical, psychosocial, and financial challenges in caring for an older family member with incontinence. Educational and supportive programs for managing incontinence should be multi-component and tailored to meet the individual needs of informal caregivers. Future research should incorporate strategies to cope with emotional responses and offer practical strategies for managing incontinence. PROSPERO REGISTRATION: CRD42017069185.

The Medication Experience: A Concept Analysis.

This is a concept analysis of the medication experience with a focus on how it applies to the pharmaceutical care practice framework used by pharmacist practitioners. The medication experience is a vital component of pharmaceutical care practice and of patient-centered care. Although the experience of taking medication has been studied across disciplines for decades, a concept analysis of the medication experience is lacking. Rodgers' evolutionary concept analysis method was utilized. Ovid Medline, CINAHL, PsycINFO, Sociological Abstracts and Google Scholar databases, references and hand searches were used to compile an international dataset of 66 papers published from 1982 to 2020. As a result of the available literature, the medication experience is defined as one of ambivalence and vulnerability in which the patient is actively engaged in an ongoing process or negotiation, which is pragmatic to the ways in which they live and experience life, contextualized and nuanced within the social construction of their individual realities. The concept of medication experience is an important addition to the scientific literature. The definition of medication experience from the perspective of the patient will help to better explain the concept for future research and theory development to move the discipline of pharmaceutical care practice forward.