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.

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.

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.

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.

Exploring parents' environmental needs at the time of a child's death in the pediatric intensive care unit.

OBJECTIVE: Many childhood deaths in the United States occur in intensive care settings. The environmental needs of parents experiencing their child's death in a pediatric intensive care unit must be understood to design facilities that comfort at the time of death and promote healing after loss. The purpose of this study is to explore parents' environmental needs during their child's hospitalization and death in the pediatric intensive care unit. DESIGN: Descriptive qualitative study. SETTING: A university-affiliated children's hospital. PARTICIPANTS: Thirty-three parents of 26 children who died in a pediatric intensive care unit. INTERVENTIONS: Semistructured, in-depth, videotaped interviews were conducted with parents 2 yrs after their child's death. Interviews were analyzed by an interdisciplinary research team using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Environmental themes identified through parent interviews included 1) places remembered, 2) spatial characteristics, 3) services for daily living, 4) parent caregiving, 5) access, and 6) presence of people. Places remembered by parents in most detail included the pediatric intensive care unit patient rooms and waiting room. Spatial characteristics pertaining to these places included the need for privacy, proximity, adequate space, control of sensory stimuli, cleanliness, and safety. Parents needed facilities that enabled self-care such as a place to eat, shower, and sleep. Parents also needed access to their child and opportunities to participate in their child's care. Parents described the physical presence of people, such as those who provide professional and personal support, as another important environmental need. CONCLUSIONS: The pediatric intensive care unit environment affects parents at the time of their child's death and produces memories that are vivid and long lasting. Positive environmental memories can contribute to comfort during bereavement whereas negative memories can compound an already devastating experience. Parents' perspectives of the pediatric intensive care unit environment can provide insight for adapting existing spaces and designing new facilities.

Crossing disciplinary boundaries in end-of-life education.

There is a tremendous need to educate professional nurses and other health care providers in the care of the dying person. Both nurses and physicians have begun to recognize the need to cross traditional disciplinary boundaries to provide the complex care required during the last human transition. This article describes the evolution of a unique interdisciplinary graduate course on end-of-life issues at Wayne State University. Using a new model centered on narrative and culture, the course focuses on the synthesis of concepts from many of the stories told by and about dying people, their families and communities, and their various caregivers. The effects of 5 years of experience with the course on students, faculty, and the university community are described, and future directions are suggested.

Life as death scholars: passion, personality, and professional perspectives.

In death-averse American society, the field of thanatology is often socially and academically isolating. The purpose of this article is to describe the experiences of a group of death scholars and share insights gained as members of an interdisciplinary team. They discuss the ways in which they have created a special "safe" space for death study collaboration. The melding of their individual passions, personalities, and professional perspectives has allowed them to form a productive and satisfying work environment. Additional discourse in this field is needed on the nature and processes of such death-studies groups.

Social justice: added metaparadigm concept for urban health nursing.

Historically, the nursing metaparadigm has been used to describe 4 concepts of nursing knowledge (person, environment, health, and nursing) that reflect beliefs held by the profession about nursing's context and content. The authors offer an assessment of the metaparadigm as it applies to community and public health nursing in urban settings and offer an amendment of the metaparadigm to include the central concept of social justice. Each of the metaparadigm concepts and the central concept of social justice is discussed as it applies to a model of urban health nursing teaching, research, and practice.

Special considerations in conducting bereavement focus groups.

Focus groups conducted with grieving people pose special challenges. However, this method can be successfully used in bereavement research especially when group interaction is central to the research aim. This article builds on key articles discussing ethical, methodological, logistical, and analytical issues in conducting focus groups with vulnerable populations (Owen, 2001; Seymour, Bellamy, Gott, Ahmedzai, & Clark, 2002). For bereaved people, vulnerability stems from heightened potential for harm by virtue of participation in sensitive, personal exploration of death-related experiences. We discuss reasons for selecting focus group methods and our experiences with planning and implementing focus groups with bereaved people. Issues found to be highly salient in our work include: team composition, participant recruitment, creating the environment, starting and ending the group, language and listening, managing emotional discussions and time, and analytic considerations. Recommendations are made for effectively using focus groups to generate new knowledge in bereavement research.

Enhancing cultural competence among hospice staff.

A critical component in making hospice and palliative care services accessible and acceptable to diverse communities is preparation of all providers to enhance cultural competence. This article reports a study designed to test an educational intervention aimed at expanding cultural awareness, sensitivity, and competence with a multi-disciplinary and multilevel team of hospice workers. The purpose of this quasi-experimental, longitudinal, crossover design was to test the effects of an educational intervention for multidisciplinary hospice providers. Findings demonstrated that even with a modest face-to-face intervention, cultural competence scores were significantly greater after the educational intervention for participants in both groups. Although the intervention proved successful at enhancing cultural competence scores among diverse types of hospice workers, limitations and logistic insights gained from this pilot suggest the need for examination of alternative methods of program delivery.

Differences in veterans' and nonveterans' end-of-life preferences: a pilot study.

BACKGROUND: Investigators conducting focus groups on end-of-life preferences noted that veterans voiced opinions that strongly differed from those of nonveterans. OBJECTIVE: The objective of this study was to further explore differences between veterans' and nonveterans' end-of-life preferences. METHODS: Ten focus groups and a pilot survey were conducted. SETTING AND SAMPLE: The focus groups consisted of Arab Muslims, Arab Christians, Hispanics, blacks, and whites stratified by gender (n = 73). Fifteen male veterans were included across all five racial groups. MEASURES: A moderator discussion guide was used to lead the focus groups and a pilot survey asked about demographic information and end-of-life preferences. RESULTS: Veterans were more likely to be married (p < 0.05) and less connected to their cultural group (p < 0.05) than nonveterans. The focus group results indicated that veterans in this study were more likely to oppose the use of heroic measures compared to nonveterans. More so than nonveterans, veterans felt that their doctors should be frank and open (p < 0.05) were strongly in favor of do-not-resuscitate (DNR) orders (p < 0.10), yet were less likely to have a proxy (p < 0.10) or durable power of attorney p < 0.01). Comparing end-of-life preferences, veterans felt less strongly than nonveterans about remembering personal accomplishments (p < 0.05), being listened to (p < 0.05), being with friends (p < 0.01), or being comfortable with their nurse (p < 0.05), but did want to be around their pets at the end of life p < 0.10). IMPLICATIONS: The Department of Veterans Affairs is in a unique position to improve endof- life care for veterans. Providing end-of-life care that is congruent with the veteran's wishes can improve satisfaction and increase cost effectiveness by eliminating unacceptable services.