Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care.

OBJECTIVES: This qualitative-descriptive study explored adolescent and young adult (AYA) perspectives, experiences, and challenges with openness and closedness in family communication about Li-Fraumeni syndrome (LFS). METHODS: We conducted interviews with AYAs (aged 15-39 years) with LFS enrolled in the National Cancer Institute's LFS study (NCT01443468). An interprofessional clinician-researcher team analyzed transcribed data using the constant comparative method and interpretive description. RESULTS: AYAs (N = 38; 26 females, 12 males, mean age=29 years) reported navigating openness and closedness about LFS in their families, which varied by LFS topic, relationship, disease trajectory, and developmental phase. AYAs described communication challenges, including broaching difficult topics (e.g., reproductive decision-making, end-of-life), balancing information-sharing with emotionally protecting family and self, and struggling with interactions that cause relational tensions. CONCLUSIONS: AYAs reported experiencing LFS family communication challenges that disrupted their psychosocial well-being. LFS-related stressors and life transitions complicated and were complicated by these challenging family interactions. PRACTICE IMPLICATIONS: Clinicians may support AYAs with LFS by inquiring about family communication, responding empathically to communication concerns, providing resources to support difficult conversations, and engaging mental health providers as needed. Researchers could partner with AYAs to develop tailored communication skills training and social support tools.

A Nurse-Navigated, Postpartum Support Text Messaging Intervention: Satisfaction Among Primiparous Women.

More than 50% of maternal deaths in the United States occur during the first year following childbirth. Nearly 40% of these deaths occur between days 1 and 41 of the postpartum period. Historically, women receive less attention from healthcare providers during the postpartum period when compared with the care provided during pregnancy and childbirth. Women may not return for scheduled follow-up care until 4 to 6 weeks after birth, if they return at all. The role of postpartum nurse navigator (PPNN) was developed to deliver a novel, text messaging intervention as part of a randomized controlled trial to 43 primiparous women who experienced an unplanned cesarean birth. Through daily, interactive text messaging, the PPNN assessed study participants' general well-being, assisted with symptom navigation, offered anticipatory guidance, and provided informational support until 4 weeks postpartum. Satisfaction with the intervention was evaluated using a survey that incorporated quantitative and qualitative responses. Overwhelmingly, 93% of participants rated their overall experience with the text messaging intervention as outstanding or good. At least 95% of the participants indicated that they would likely choose to receive daily text messaging from a PPNN following a subsequent birth. Convenient access to professional nurse support for women postbirth warrants further evaluation.

Revisiting the Fetal Assault Law in Tennessee: Implications and the Way Forward.

The rising prevalence of opioid use disorder (OUD) among those living in the United States has demanded a collaborative response from health care and policy spheres. Addressing OUD among pregnant women is especially difficult, given the controversies surrounding the medical and ethical balance between meeting maternal versus fetal/newborn needs. Most medical organizations discourage the criminalization of drug use in pregnancy due to the adverse public health outcomes of such an approach. Despite this recommendation, many states continue to use punitive law to address drug use in pregnancy. In 2014, the Fetal Assault Law in Tennessee (TN) became the first law in the United States to directly allow women to be prosecuted for drug use in pregnancy. Since its expiration in 2016, this law has been re-introduced several times to the TN legislature in support of permanent implementation. This article outlines the impact of the initial Fetal Assault Law on maternal/newborn health in TN and provides alternative immediate, short-term, and long-term health policy strategies through which health care providers and legislators can better advocate for the well-being of both mothers with OUD and their infants.

A Concept Analysis of Dependence Using Rodgers' Evolutionary Method.

The concept of dependence covers a broad range of experiences. Many health-related professions, including nursing, use the concept in the context of substance use and addiction; however, the use of the concept is often confusing and lacks distinct boundaries. Researchers and theorists in nursing require conceptual clarification and definition because it helps ensure effective theory development and operationalization of the concept as a research variable. A concept analysis using Rodgers' Evolutionary Method is presented, resulting in a revised definition of dependence, as it relates to substance use disorders and addiction. This analysis and resultant definition are timely to the nation's opioid use disorder epidemic. Surrogate terms, related concepts, attributes, assumptions, consequences, and a model case of dependence support the assertion for a change in terminology and culminate with clarification of a new definition for use in nursing.

Geographic distribution of hospice, homecare, and nursing home facilities and access to end-of-life care among persons living with HIV/AIDS in Appalachia.

BACKGROUND: Access to healthcare services, from diagnosis through end of life (EOL), is important among persons living with Human Immunodeficiency Syndrome (HIV) and Acquired Immunodeficiency Syndrome (AIDS) (PLWHA). However, little is known about the availability of hospice services in Appalachian areas. Therefore, the objective of this study is to describe the geographic distribution of hospice, homecare and nursing home facilities in order to demonstrate current existence of and access to resources for EOL care among PLWHA in the Appalachian regions of Tennessee and Alabama. METHODS: This paper reports on the second aim of a larger sequential, mixed methods qualitative-quantitative (qual→quan) study. Data from advance care planning (ACP) surveys were collected by both electronic (n = 28) and paper copies (n = 201) and, among other things, obtained information on zip codes of residence of PLWHA. This enabled assessment of the geographic distribution of residences of PLWHA in relation to the distribution of healthcare services such as hospice and home healthcare services. Hospice and Home Healthcare data were obtained from the Tennessee and Alabama Departments of Health. The street addresses of these facilities were used to geocode and map the geographic distributions of the facilities using Street Map USA. Travel times to Hospice and Home Healthcare facilities were computed and mapped using ArcGIS 10.3. RESULTS: We identified a total of 32 hospice and 69 home healthcare facilities in the Tennessee Appalachian region, while the Alabama Appalachian region had a total of 110 hospice and 86 home healthcare facilities. Most care facilities were located in urban centers. The distribution of care facilities was worse in Tennessee with many counties having no facilities, requiring up to an hour drive time to reach patients. A total of 86% of the PLWHA indicated preference to die at home. CONCLUSIONS: Persons living with HIV/AIDS in Appalachia face a number of challenges at the end of life that make access to EOL services difficult. Although respondents indicated a preference to die at home, the hospice/homecare infrastructure and resources are overwhelmingly inadequate to meet this need. There is need to improve access to EOL care in the Appalachian regions of both Tennessee and Alabama although the need is greater in Tennessee.

A Nursing Perspective on Infant Bed-Sharing Using Multidisciplinary Theory Integration.

The American Academy of Pediatrics recommends against bed-sharing between infants and caregivers due to an association with suffocation. Caregivers continue to share a bed with their infant despite these recommendations for a multitude of reasons. A close examination of the bed-sharing literature reveals that the debate is fundamentally about theoretical differences. The major theories used to frame this problem include the triple risk model of bed-sharing and evolutionary theories. Nurses are masters of multidisciplinary collaboration and are well positioned to unify the triple risk and evolutionary views of infant bed-sharing to guide future innovations in health care practice and research.

The Use of Communication Technology to Affect Patient Outcomes in the Intensive Care Unit.

Effective two-way patient-provider communication is challenging and is even more difficult when patients are communication vulnerable. The results of being unheard and unacknowledged can contribute to negative feelings and may manifest as symptoms of anxiety and depression. Researchers explored symptoms of anxiety and depression when using a team-developed, patient-centered, and nurse-led intervention called Speak for Myself-Voice (formerly published as Speak for Myself) in five intensive care units at a Magnet status, university-affiliated medical center in East Tennessee. This was an equivalent control group design. The data were analyzed with a mixed-effect analysis of variance (between and within groups) with repeated measures to see if the treatment group changed differently than the control group across time (48 hours). This study report adds information about anxiety and depression in patients who are communication vulnerable and using communication technology.

A Focus Group Study of Provider and Patient Perceptions of Communicating Advanced Care Planning Wishes Using Digital Storytelling.

Advanced care planning (ACP) and end-of-life discussions are especially difficult among persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) as a result of patients' lack of trust in family and providers, HIV-related stigma, misunderstood spirituality concerns, social isolation, and other factors. Previous research has demonstrated that relatively few persons living with HIV/AIDS engage in ACP, yet developing culturally sensitive methods of ACP is imperative. One such method is digital storytelling, a video narrative that can be used to share ideas or aspects of a life story.The aim of this study was to examine perspectives from providers and persons living with HIV/AIDS about the acceptability, benefits, and technological challenges of and barriers to using digital storytelling for ACP. A qualitative descriptive design was employed using focus groups of 21 participants in South Central Appalachia. Transcribed data were analyzed using qualitative content analysis. Findings revealed patient and provider ideas about ACP, factors related to digital story acceptability, stigma against persons living with HIV/AIDS, and concern for the legality of ACPs expressed in digital story format. Future research should focus on the process of creating digital stories as an intervention to improve ACP in this unique aggregate.

Stigma and Spiritual Well-being among People Living with HIV/AIDS in Southern Appalachia.

The Appalachian South is disproportionately affected by HIV/AIDS. Partly due to the negative connotation that this disease carries in religiously conservative areas, HIV-related stigma remains a critical barrier to HIV care in the South. However, spirituality is a well-documented, effective coping mechanism among persons living with HIV/AIDS (PLWH). The purpose of this study was to examine the relationship between HIV-related stigma and spiritual well-being among a sample of PLWH (n = 216) in Appalachian counties of Tennessee and Alabama using the HIV Stigma Scale and the Spiritual Well-being Scale. Overall, disclosure of HIV status was the most highly reported stigma concern. Women reported higher levels of stigma and religious well-being than men. While existential well-being was negatively correlated with stigma, no significant overall correlation was found between religious well-being and stigma. Our findings reveal the importance of defining theology and differentiating between cultural religious conditioning and internalized beliefs.

Anticipating Needs at End of Life in Narratives Related by People Living With HIV/AIDS in Appalachia.

As part of a mixed methods study determining end-of-life and advanced care planning needs in southern Appalachia, a narrative analysis was done of stories told in interviews of 8 selected participants using transcript data. Narratives were fraught with contradiction and paradox. Tensions were evident about living in Appalachia, the Bible Belt, and an area wherein distances are long and community rejection can occur as news travels quickly. The primary finding was that stigma, from several sources, and shrinking circles of social support for people living with HIV/AIDS, all of whom were in treatment, combined to create a sense of solitariness. Narratives were fraught with tensions, contradictions, and paradoxes. Living in Appalachia, the Bible Belt, and an area wherein distances are long and community rejection can occur as news travels quickly. The rejection-based religiously based stigma was often predicated on stereotypes about sexual behavior and illicit drug use. Diagnosis was a key turning point after which many spiraled downward financially and socially. Implications for research and advanced care planning are included.

Understanding HIV-Related Stigma Among Women in the Southern United States: A Literature Review.

Societal stigmatization of HIV/AIDS due to assumptions about transmission and associated behaviors plays a substantial role in the psychosocial well-being of people living with this chronic illness, particularly for women in traditionally conservative geographic regions. Known for social conservatism, the Southern United States (US) holds the highest incidence rate of HIV infection in the US. A systematic search of four databases was used to identify 27 relevant scientific articles pertaining to HIV-related stigma among women living with HIV/AIDS in the Southern US. These studies revealed a rudimentary understanding of stigma sources, effects, and stigma-reduction interventions in this population. Due to the cultural specificity of stigma, further differentiation of stigma in discrete sectors of the South as well as a dialogue about the moral implications of stigma is necessary to lay the groundwork for patient-centered interventions to mitigate the destructive effects of stigma experienced by women in this region.

Climbing Back Up the Mountain: Reflections From an Exploration of End-of-Life Needs of Persons Living With HIV/AIDS in Appalachian Tennessee.

Little is known about the health access and end-of-life (EOL) concerns of persons living with HIV/AIDS (PLWHA) in Appalachia, where religious and cultural values are largely traditional. A qualitative, descriptive study with 9 participants was undertaken to assess EOL care needs among those from South Central Appalachian PLWHA. The focus of the study was to examine subjective data regarding EOL needs assessment related to advanced care planning. Five men and 4 women self-acknowledged a diagnosis of HIV/AIDS and completed a 2-hour face-to-face interview with the nurse researcher. Data were analyzed using qualitative descriptive content analysis methods, including data coding for emergent themes and metaphors. A common metaphor tied content to both struggle and triumph as well as the beauty and ruggedness of the Appalachian region: "Climbing Back up the Mountain." Rich descriptions of the significance of the metaphor match with stigma as the greatest hurdle to overcome in planning and interacting with others, including health care providers and significant others, about EOL care needs and advanced planning preferences. Further, the metaphor was derived directly from quotes offered by participants. Sources of stigma were often intersecting: the disease itself, associations with "promiscuity," sexual minority status, illicit drug use, and so on. Strong spiritual images were contrasted with a common avoidance and disdain of organized religion. Findings were used in refining plans for a larger study of EOL care needs and concerns on the population of PLWHA in 2 Southern Appalachian states. Comparison with other research and insights for providers is included.

Survivor guilt: analyzing the concept and its contexts.

Survivor guilt, a concept associated with the interpersonal process of "surviving" harm while others do not, increasingly appears in nursing, medicine, and psychology literature. Paradoxically, the phenomenon is rarely defined and often poorly described. Combining Rodger's evolutionary concept analysis with a comprehensive literature review, we explain the attributes, antecedents, consequences, related concepts, and surrogate terms of survivor guilt. A new definition emerged from the evolving use of the concept in new contexts. Survivor guilt is a valid form of suffering for which effective interventions need to be developed. This analysis extends the concept, laying the foundation for comprehensive treatment strategies.

Genetic Information-Seeking Behaviors and Knowledge among Family Members and Patients with Inherited Bone Marrow Failure Syndromes.

Inherited bone marrow failure syndromes (IBMFS) including Fanconi anemia, dyskeratosis congenita, Diamond-Blackfan anemia, and Shwachman-Diamond syndrome are rare genetic disorders characterized by hematologic complications and increased risk of cancer. Patients and their families likely experience obstacles in obtaining sufficient health information given their disorders' rarity. To investigate this possibility, we examined information-seeking behaviors and levels of general and disorder-specific genetic knowledge among 315 members of 174 families with an IBMFS, and how information-seeking behaviors and socio-demographic factors may be associated with their genetic knowledge. Cross-sectional survey data indicated that participants were most likely to have ever used the Internet or healthcare providers for genetic information. On average, participants correctly answered 57 % of items assessing general genetic knowledge and 49-59 % of disorder-specific knowledge items. Greater knowledge was associated with greater education and ever experiencing genetic counseling, attending a scientific meeting, and seeking information from the Internet and scientific literature. Among families with Fanconi anemia (whose family support organization has the longest history of providing information), greater disorder-specific genetic knowledge was also associated with seeking information from support groups and other affected families. Results suggest that families with IBMFS have uncertainty regarding genetic aspects of their disorder, and highlight potential channels for delivering educational resources.

The use of haematopoietic stem cell transplantation in Fanconi anaemia patients: a survey of decision making among families in the US and Canada.

BACKGROUND: Fanconi anaemia (FA) is a rare genetic disorder associated with bone marrow failure (BMF), congenital anomalies and cancer susceptibility. Stem cell transplantation (SCT) offers a potential cure for BMF or leukaemia, but incurs substantial risks. Little is known about factors influencing SCT decision making. OBJECTIVE: The study objective was to explore factors influencing patients' with FA and family members' decision making about SCT. DESIGN: Using a mixed-methods exploratory design, we surveyed US and Canadian patients with FA and family members who were offered SCT. MAIN VARIABLES STUDIED: Closed-ended survey items measured respondents' beliefs about the necessity, risks and concerns regarding SCT; multivariable logistic regression was used to examine the association between these factors and the decision to undergo SCT. Open-ended survey items measured respondents' perceptions of factors important to the SCT decision; qualitative analysis was used to identify emergent themes. RESULTS: The decision to undergo SCT was significantly associated with greater perceived necessity (OR = 2.81, P = 0.004) and lower concern about harms of SCT (OR = 0.31, P = 0.03). Qualitative analysis revealed a perceived lack of choice among respondents regarding the use of SCT, which was related to physician influence and respondent concerns about patients' quality of life. CONCLUSIONS: Overall, study results emphasize the importance of the delicate interplay between provider recommendation of a medical procedure and patient/parental perceptions and decision making. Findings can help providers understand the need to acknowledge family members' perceptions of SCT decision making and offer a comprehensive discussion of the necessity, risks, benefits and potential outcomes.

Nursing genomics: practice implications every nurse should know.

Twenty-first century nurse clinicians, scientists, and educators must be informed of and become proficient in genetic competencies to provide the best available evidenced-based patient care. This article presents a historical context and basic applications of genetics, along with the attendant legal and ethical issues, to provide a framework for understanding genetics and the genomics applications used in clinical nursing practice. The implications of genomics are relevant to all areas of nursing practice, including risk assessment, education, clinical management, and future research.

Participant satisfaction with Wellness Recovery Action Plan (WRAP).

Outpatient programs are often promoted as vehicles for mental health recovery. Yet, few programs include patients' perspectives about their satisfaction with these programs. This descriptive, cross-sectional survey investigated patients' satisfaction with Wellness Recovery Action Plan (WRAP). Participants completed the Mental Health Statistics Improvement Program instrument (n = 26) and qualitative interviews (n = 18). Data were analyzed using multivariate statistics (α = .05) and content analysis. Three composite variables explained 48% of the variance (p = .00) in patient satisfaction. Four themes emerged: Retrospective Desire for Early WRAP Introduction, Pay It Forward, Unconditional Relational Support, and It Takes Time. Future research is warranted to promote WRAP's use in broader settings.

Sources of uncertainty and their association with medical decision making: exploring mechanisms in Fanconi anemia.

BACKGROUND: Effects of different sources of medical uncertainty on people's health-related cognitions, emotions, and decision making have yet to be systematically examined. PURPOSE: The aim of this study is to examine how uncertainties arising from different sources are associated with decision making regarding stem cell transplantation in Fanconi anemia, a rare, inherited bone marrow failure syndrome that typically presents during childhood. METHODS: Data were collected through a cross-sectional survey of 178 parents of 126 Fanconi anemia patients. RESULTS: Two distinct sources of uncertainty were associated with decision outcomes: probability was associated with a lower likelihood of choosing stem cell transplantation, and ambiguity due to conflicting expert opinions was associated with greater decision-making difficulty. Concern about transplantation may mediate these associations. CONCLUSIONS: Different sources of uncertainty have different effects on Fanconi anemia treatment decisions, which may be mediated by parents' emotional reactions. Further research is needed to elucidate these effects and help Fanconi anemia families cope with uncertainty.

The impact of a palliative care program in a rural Appalachian community hospital: a quality improvement process.

BACKGROUND: Hospital inpatient palliative care consultation services (PCCSs) provide high-quality, comprehensive care for seriously ill patients and their families. The objective of the Palliative Care Impact Study was to evaluate the impact of a PCCS in a rural Appalachian community hospital in 4 domains: clinical, customer, operational, and financial. METHODS AND RESULTS: A nonrandomized preintervention-postintervention study enrolled 25 patients. We collected data in the 4 domains listed above after a palliative care (PC) consultation and compared them with preconsultation data. Findings demonstrated a statistically significant improvement in pain and symptom burden scores; customer metrics produced an excellent rating of 88.5% by patients and families and physician/providers; with an associated cost savings of $521 per patient per day after PC consultation was complete.