Treatment Collaboration When the Stakes Are High: Ethnographically Studying Family-Centered Care in an Outpatient Pediatric Specialty Clinic.

Family-centered care (FCC) is vital for children with special health-care needs and serious chronic illnesses. Family-clinician collaboration and partnership formation are key FCC elements associated with improved health outcomes. However, FCC implementation barriers persist. Although some ethnographic research examines how FCC principles align with practice in inpatient settings, more studies are needed in outpatient specialty clinics. Using an FCC-oriented research team (clinicians, social science researchers, and families) blended multidisciplinary clinical knowledge and family/patient expertise with chronic illness. Our ethnographic study in a high-risk asthma outpatient clinic examined how FCC principles align with clinical practice, identified factors affecting partnership, and compared our findings to a large ethnographic study in an inpatient setting. Qualitative data from direct observation of 14 families with lengthy clinic visits were analyzed. Codes were applied to themes using FCC principles. Clinic visits had interactional and contextual elements that both aligned and misaligned with key FCC principles: information sharing, respect, participation, and collaboration. Recommendations for advancing FCC are outlined, and the importance of this step in light of ongoing health disparities is addressed.

Development of a Child Abuse Level Management (CALM) Guide for Research with Young Children.

Reporting child abuse or neglect is an ethical expectation and a legislated mandate of behavioral and health care professionals in the United States. In particular, researchers who investigate parent-child dyads are responsible for submitting procedures and informed consent documents to institutional review boards that provide for the protection of children. The challenge for researchers is to recognize failing quality of parent-child interaction, prior to any event of maltreatment and to intercede in a deteriorating dynamic. The obligation to report any suspicions of child maltreatment supersedes the responsibility to provide for confidentiality of research data. The purpose of this paper is to describe the rationale for the development of a research protocol guide, Child Abuse Level Management (CALM), and address protection of children in research. The CALM is a brief, flexible guide designed for use by researchers to help identify and respond to negative trends in the parent-child interaction during data collection. Suggested intervention scripts are provided that can be modified for specific culture-focused samples. The CALM guide can be used for training of data collectors using simulations prior to initiating any study involving higher-risk dyads.

Teaching About Better Family-Clinician Partnerships in High-Risk Pediatric Asthma Care.

Family-clinician partnership including communication, trust, respect, and power leveling is essential in pediatrics. Our case study illustrates elements supporting/hindering partnership in a high-risk urban pediatric asthma clinic. Data from observation of a 100-minute visit were qualitatively analyzed by applying codes to themes, using family-centered principles. Three key categories emerged from examining interactions and their sequencing: (1) partnership supported, (2) partnership missed, and (3) partnership hindered. Practitioners must become more sensitive to families' lives and skilled in family-centered care delivery. Clinician education about partnership can help with negotiating workable treatment strategies for complex conditions such as asthma and reduce health disparities.

Cultural Competence Among Italian Nurses: A Multicentric Survey.

PURPOSE: To assess Italian nurses' cultural competence, as they are increasingly called upon to care for people of foreign origins. DESIGN: A cross-sectional, multicentric study. METHODS: From September 2013 to May 2014, a survey was carried out among Italian nurses. Cultural competence was assessed by the Cultural Competence Assessment tool, translated and adapted to the Italian context. FINDINGS: Nurses who completed the survey numbered 1,432; 70.6% were female; 42.6% ranged in age from 41 to 50 years; and 50.0% were bachelor's prepared. More than 50% had participated in some kind of cultural diversity training. Overall, cultural competence was moderate, showing a moderately high level of cultural awareness and sensitivity (mean = 5.41; SD = 0.66) and a moderate level of culturally competent behaviors (mean = 4.33; SD = 1.10). CONCLUSIONS: Although Italian nurses' cultural competence was acceptable, given the growing diversity of the patient population, nurses should be better prepared to face the changing health requests. CLINICAL RELEVANCE: Providing culturally competent care has been associated with improved provider-client communication, higher satisfaction with care, and health status improvement, as full comprehension of health status, adherence to medications and lifestyle recommendations, and appropriate utilization of the health system. Healthcare providers need to be adequately trained to provide culturally competent care. This research provides, for the first time, a report on Italian nurses' levels of cultural competence, and strengthens the current literature underlining the need for continuous education to enhance cultural competence among nurses.

Extended family support for parents faced with life-support decisions for extremely premature infants.

PURPOSE: To outline parents' descriptions of extended family involvement and support surrounding decision making for their extremely preterm infant. DESIGN: Collective case study design in a prospective, descriptive, longitudinal research. Seventy-five digitally recorded interviews were done with parents before and after the birth. SAMPLE: Fifty-four parents (40 mothers, 14 fathers). MAIN OUTCOME VARIABLE: Categories of family involvement and support in the parents' decision making. RESULTS: Most parents did not seek advice from family members for life-support decisions made prenatally. Instead, parents made the decision as a couple with their physician without seeking family input. Family members provided certain types of support: emotional support, advice and information, prayer, and instrumental help such as child care. Most parents described at least one way their family supported them. For postnatal and end-of-life decisions, parents were more likely to seek advice from extended family in addition to the other forms of support.

Challenges to Recruitment of Urban African American Patients with Cancer Pain.

There are many assumptions about recruitment of African Americans to cancer studies. The population is often characterized as older, low income, with limited education, scarce resources, and distrust of the health care system. Support systems for African Americans are reported to be centered on family and church communities. Observations made during recruitment and enrollments for a longitudinal intervention study with urban African Americans with cancer pain are presented. Majority of the subjects being recruited in this study are well educated, knowledgeable about research and very open to healthcare providers and researchers. Our population is younger than anticipated and struggling with an absence of family, faith, or community supports. They are more connected in terms of phone ownership, but often difficult to contact due to interruptions in phone service, housing insecurity and time demands related to medical care for their cancer. We conclude that familiarity with cultural patterns of a population of interest is necessary, but local and individual assessment is critical to successful recruitment to research.

Development of a spiritual self-care practice scale.

BACKGROUND AND PURPOSE: Development of a valid, reliable instrument to measure spiritual self-care practices of patients with heart failure. METHODS: African American patients (N = 142) with heart failure participated in the study. Spiritual advisors from several religious groups reviewed the Spiritual Self-Care Practices Scale (SSCPS) for content validity. Construct validity was determined using a principal components factor analysis. Reliability was established using Cronbach's alpha coefficients. RESULTS: Religious advisors provided suggestions to improve content validity. Four factors consistent with spiritual practices (personal spiritual practices, spiritual practices, physical spiritual practices, and interpersonal spiritual practices) emerged from the factor analysis. The alpha coefficient was moderate at 0.64. CONCLUSIONS: Results indicated the SSCPS was reliable and valid for measuring spiritual self-care practices among African Americans with heart failure. Additional testing is needed to confirm results in other patient groups with chronic illnesses.

Conceptual and design issues in instrument development for research with bereaved parents.

Many childhood deaths in the United States occur in pediatric intensive care units (PICUs) and parents have special needs in this death context. As an interdisciplinary research team, we discuss conceptual and design issues encountered in creating a new instrument, the Bereaved Parent Needs Assessment-PICU, for assessing parents' needs in this setting. Using a qualitative approach, our team previously explored how the culture and related ways of providing care in one urban Midwestern children's hospital PICU affected parents' bereavement needs and experiences. We describe using this qualitative foundation in the development of a new quantitative instrument to more widely validate and measure bereaved parents' needs around the time of a child's death across multiple PICUs. We highlight a series of issues that warrant consideration in designing a research instrument for this vulnerable population including setting and context, format and content, temporality, recruitment, and content expertise.

The Bereaved Parent Needs Assessment: a new instrument to assess the needs of parents whose children died in the pediatric intensive care unit*.

OBJECTIVES: To evaluate the reliability and validity of the Bereaved Parent Needs Assessment, a new instrument to measure parents' needs and need fulfillment around the time of their child's death in the pediatric intensive care unit. We hypothesized that need fulfillment would be negatively related to complicated grief and positively related to quality of life during bereavement. DESIGN: Cross-sectional survey. SETTING: Five U.S. children's hospital pediatric intensive care units. SUBJECTS: Parents (n = 121) bereaved in a pediatric intensive care unit 6 months earlier. INTERVENTIONS: Surveys included the 68-item Bereaved Parent Needs Assessment, the Inventory of Complicated Grief, and the abbreviated version of the World Health Organization Quality of Life questionnaire. Each Bereaved Parent Needs Assessment item described a potential need and was rated on two scales: 1) a 5-point rating of importance (1 = not at all important, 5 = very important) and 2) a 5-point rating of fulfillment (1 = not at all met, 5 = completely met). Three composite scales were computed: 1) total importance (percentage of all needs rated ≥4 for importance), 2) total fulfillment (percentage of all needs rated ≥4 for fulfillment), and 3) percent fulfillment (percentage of important needs that were fulfilled). Internal consistency reliability was assessed by Cronbach's α and Spearman-Brown-corrected split-half reliability. Generalized estimating equations were used to test predictions between composite scales and the Inventory of Complicated Grief and World Health Organization Quality of Life questionnaire. MEASUREMENTS AND MAIN RESULTS: Two items had mean importance ratings <3, and 55 had mean ratings >4. Reliability of composite scores ranged from 0.92 to 0.94. Total fulfillment was negatively correlated with Inventory of Complicated Grief (r = -.29; p < .01) and positively correlated with World Health Organization Quality of Life questionnaire (r = .21; p < .05). Percent fulfillment was also significantly correlated with both outcomes. Adjusting for parent's age, education, and loss of an only child, percent fulfillment remained significantly correlated with Inventory of Complicated Grief but not with World Health Organization Quality of Life questionnaire. CONCLUSIONS: The Bereaved Parent Needs Assessment demonstrated reliability and validity to assess the needs of parents bereaved in the pediatric intensive care unit. Meeting parents' needs around the time of their child's death may promote adjustment to loss.

Drug disposal among hospice home care nurses: a pilot study of current practice and attitudes.

CONTEXT: It is the role of the hospice home care nurse to dispose of unused medications after a patient's death. However, the methods of disposal, the nurses' attitudes, and beliefs regarding the environmental and health effects of disposal practices, as well as the knowledge of applicable federal guidelines, are unknown. OBJECTIVES: The purpose of the study was to explore the drug disposal practices of Michigan hospice home care nurses and the related attitudes and beliefs. METHODS: A Web-based survey was administered to a convenience sample (n=138) of hospice home care nurses. RESULTS: Nearly half of the respondents reported disposing of 11 or more doses per patient. Nurses most commonly disposed of the drugs by mixing them with a noxious substance and considered this method both acceptable and safe. However, more than half (55%) reported that they dispose to sewerage always or often, and nurses were concerned about legal and environmental issues around drug disposal. Most nurses reported that returning medications to the hospice office was unsafe or extremely unsafe. CONCLUSION: Findings from this study suggest further education, practice, and research directions.

Parental bereavement needs in the pediatric intensive care unit: review of available measures.

BACKGROUND: Pediatric intensive care units (PICUs) are highly technological settings in which advanced care is used to restore health to critically ill children; however, they are also places where children die. Understanding the needs of parents bereaved in this setting is essential for better family care. OBJECTIVE: To systematically review the extant literature to identify instruments potentially useful for assessing the needs of parents bereaved in the PICU. METHODS: We searched PubMed™, CINAHL™, and Health and Psychosocial Instruments™ for tools to assess family needs during a relative's hospitalization. From 357 abstracts, 96 articles were reviewed that described 31 instruments. Fifteen instruments were selected based on their (1) use with parents and/or the bereaved, (2) use in PICU, neonatal intensive care, or pediatric wards, (3) measurement of family needs or related constructs, and (4) published psychometrics. Need-related constructs included satisfaction with family care and environmental stress since these have been related to met and unmet needs, respectively. RESULTS: No instruments specifically designed to assess the needs of parents bereaved in the PICU were identified. Most tools reviewed showed validity and reliability in the populations and settings for which the tools were intended; however, validity and reliability were not established for parents bereaved in the PICU. No tools addressed the full range of needs for parents bereaved in the PICU. CONCLUSIONS: A new instrument is needed to adequately assess the needs of parents bereaved in the PICU. Patient conditions, illness trajectories, and life course perspectives must be considered in designing a new tool.

Testing a multi-group model of culturally competent behaviors among underrepresented nurse practitioners.

Diversifying the health professional workforce and enhancing cultural competence are recommended for decreasing health disparities. We tested a structural equation model of the predictors of culturally competent behaviors in a mailed survey of three groups of underrepresented nurse practitioners (n = 474). Our model had good fit and accounted for 29% of the variance in culturally competent behaviors. Life experiences with diversity had direct effects on awareness/sensitivity and behaviors, and diversity training had a direct effect on behaviors. Cultural awareness/sensitivity mediated the relationship between life experiences with diversity and culturally competent behaviors; all paths remained after controlling for covariates. For unique experiences that contribute to workplace diversity, life experiences with diversity, and diversity training are important for culturally competent behaviors.

Spirituality and spiritual self-care: expanding self-care deficit nursing theory.

The authors propose an integration of the concepts of spirituality and spiritual self-care within Orem's self-care deficit nursing theory as a critical step in theory development. Theoretical clarity is needed to understand the contributions of spirituality to health and well-being. Spirituality is the beliefs persons hold related to their subjective sense of existential connectedness including beliefs that reflect relationships with others, acknowledge a higher power, recognize an individual's place in the world, and lead to spiritual practices. Spiritual self-care is the set of spiritually-based practices in which people engage to promote continued personal development and well-being in health and illness.

Development of a Web-based educational intervention to improve cross-cultural communication among hospice providers.

In this article, the authors describe the theoretical foundation, development, and content of a Web-based educational intervention to improve cross-cultural communication about end-of-life concerns and report on the preliminary evaluation of this intervention using a qualitative study design. The data were collected with non-structured questions in a convenience sample of 21 hospice providers. Participants reported that they found the training appropriate and useful. Participants also reported finding the online delivery convenient and the interactive format valuable. Improving the quality of cross-cultural patient-provider communication can contribute to reducing disparities at end-of-life.

A three-dimensional model of cultural congruence: framework for intervention.

Culture provides the context for all health care and social service throughout the human life span. Improving end-of-life and palliative care and enhancing patient and family outcomes requires a nuanced understanding of cultural contexts for those who provide care and those who receive it. The authors of this article propose an emerging model of culturally congruent care that can guide intervention for social workers, mental health professionals, nurses, and other health care workers caring for a diverse population of patients, families, and communities.

Righting writing: strategies for improving nursing student papers.

The ability to clearly express complex ideas in writing is necessary for nurses in professional practice at all levels from novice to expert. The community health nursing course is specially designated as writing intensive to provide students with the experience of preparing a major scholarly paper. To address issues of poor paper quality and grade inflation we implemented a program including a writing workshop for faculty, a revision of the grading rubric, and a system of blind review for grading student papers. Changes resulted in a major shift in paper grades which more closely reflects the actual quality of the work.

Cultural diversity in nursing education: perils, pitfalls, and pearls.

Increasing diversity in the classroom challenges nursing educators to identify issues that complicate teaching (perils), analyze barriers for themselves and their students (pitfalls), and select new strategies for working with nontraditional students (pearls). This article identifies concerns arising from attitudes and values within nursing and common approaches to diversity education, and then discusses key issues in nursing education that relate to human nature, culture, faculty workload, and student demographics. Finally, some strategies are proposed for increasing the effectiveness of professional preparation with diverse students through a focus on culturally congruent education and development of faculty cultural competence.

Examining the needs of bereaved parents in the pediatric intensive care unit: a qualitative study.

The pediatric intensive care unit (PICU) is a high-tech setting aimed at restoring health to critically ill children. When childhood death occurs in the PICU, it constitutes a special context for parent bereavement. The purpose of this interdisciplinary qualitative research was to gain a deeper understanding of parents' needs around the time of their child's death in the PICU. Through interviews and focus groups with bereaved parents and hospital chaplains, categories of parents' needs emerged. Deeper understanding of parents' needs will allow health professionals to better support parents during bereavement as well as to provide more customized care.

Implementing a triangulation protocol in bereavement research: a methodological discussion.

Triangulation is a comparative strategy for examining data that strengthens qualitative and multi-method research. Despite the benefits of triangulation noted in the research methods literature, few concrete models for operationalization of protocols exist. Lack of documentation of explicit triangulation procedures is especially true in the area of bereavement research. This article describes how an interdisciplinary research team implemented a triangulation protocol in a study of the needs of bereaved parents. Triangulation enabled the integration of diverse data sources, methods, and disciplinary perspectives. These processes yielded a more meaningful typology of bereaved parents' needs than would have otherwise been possible. Extending the use of triangulation will enhance multi-faceted understandings of bereavement.