How do young people with a hereditary cancer predisposition syndrome understand and experience cancer survivorship? "With Li-Fraumeni syndrome, it's just an intermission".

OBJECTIVES: Adolescents and young adult (AYA) cancer survivors face unique medical and psychosocial sequalae, including chronic health conditions, late effects of treatment and fear of recurrence. The meaning of cancer survivorship may be further complicated for AYAs with hereditary cancer predisposition syndromes. This study used a patient-centered framework to investigate how AYAs with Li-Fraumeni syndrome (LFS) consider cancer survivorship. METHODS: An interprofessional team conducted 30 semi-structured interviews with AYAs (aged 18-41, mean 31 years) enrolled in the National Cancer Institute's LFS Study (NCT01443468). Twenty had experienced at least one cancer diagnosis. Interview data were thematically analyzed by an inter-professional team using interpretive description and grounded theory methods. FINDINGS: Participants viewed "survivorship" as a period marked by no evidence of formerly diagnosed disease. By contrast, participants felt the label "survivor" was tenuous since LFS is characterized by multiple primary malignancies and uncertainty about intervals between one diagnosis and the next. Many AYAs viewed survivorship as requiring a high degree of suffering. Though many personally rejected "survivor" identities, almost all articulated its various functions including positive, negative, and more complicated connotations. Instead, they chose language to represent a range of beliefs about survival, longevity, prognosis, and activism. CONCLUSIONS: AYAs with LFS struggle with the term "survivor" due to their multi-organ cancer risk, short intervals between malignancies, and evolving identities. Loved ones' cancer-related suffering informed perspectives on survivorship. Survivorship care for AYAs with cancer risk syndromes requires interprofessional interventions that address their unique biomedical and psychosocial needs.

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.

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.

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.

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.

Expanding Contraceptive Access for Women With Substance Use Disorders: Partnerships Between Public Health Departments and County Jails.

CONTEXT: Law enforcement has been the primary strategy for addressing the opioid epidemic. As a result, the incarceration rate for women in county jails has increased more than 800% since 1980, and most women inmates struggle with substance use disorders. There is a large unmet need for contraception among women in county jails. PROGRAM: The East Region of the Tennessee Department of Health partnered with county correctional facilities to provide comprehensive family planning education and voluntary long-acting reversible contraception (LARC) to women in 15 jails. IMPLEMENTATION: Incarcerated women were invited to attend a comprehensive family planning education session conducted in the jail by health department nurses. The sessions included information on neonatal abstinence syndrome. The nurses explained that the women could receive intrauterine devices, implants, and injectable progesterone while incarcerated and come to the health department for all contraceptive methods upon release. Between January 2014 and June 2017, nurses conducted 182 education sessions, and 794 women received a LARC. Method placement occurred in the jails or at the local health department. No adverse effects were known to have occurred. EVALUATION: We collected pilot data to explore the accuracy and the comprehensiveness of the family planning education session and whether the incarcerated women experienced the program as voluntary. All 18 women inmates interviewed reported experiencing the program as voluntary. Using published and administrative data, we roughly estimated that the program prevented between 270 and 460 unintended pregnancies and between 40 and 52 cases of neonatal abstinence syndrome in the first year after the women received a method. This represents a cost savings to Medicaid of $1.4 million. DISCUSSION: The partnership demonstrated the feasibility of providing voluntary comprehensive family planning education and access to highly effective contraception for women inmates who, as a group, face a host of political, socioeconomic, and personal barriers to reproductive health care.

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.

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.

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.

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.

An Interpretive Description of Drug Withdrawal Among Pregnant Women in Jail.

OBJECTIVE: To explore the experience of drug withdrawal among pregnant women in jail. DESIGN: A qualitative interpretive descriptive approach. SETTING/PROBLEM: The care of incarcerated pregnant women constitutes a complex and significant public health problem. Many have substance use disorder (SUD) and cycle in and out of jails in their community, resulting in repeated experiences of drug withdrawal. Most jails do not provide medication-assisted therapy for management of withdrawal, a situation that violates standards of care set by leading health organizations. The experience of drug withdrawal among pregnant women in jail has not been qualitatively explored in the literature. PARTICIPANTS: Five women completed interviews for the study. INTERVENTION: In-depth, qualitative interviews. RESULTS: Five themes with subthemes emerged from the interviews: Framing the Story Through Life History: I Need You to Know Where I Come From, Patterns of Thinking About Substance Use, The Manifestations of Withdrawal: Body and Mind, Perceived Punishment for Drug Use During Pregnancy, and Mixed Perceptions of Withdrawal Treatment. CONCLUSION: Participants told a story beyond that of the physical withdrawal symptoms, revealing new insights into their maternal distress and the need for compassionate, nonstigmatized care to address physical and mental symptoms, as well as advocacy for the provision of an evidence-based standard of care. Nurses who care for pregnant women with SUD in the jail setting could benefit from collaborative relationships with other health care professionals in the community to reduce disparate health outcomes for this vulnerable population.

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.

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.

Perceptions of Advance Care Planning Needs of Persons Living With HIV in Appalachia: A Qualitative Descriptive Study.

Persons living with Human immunodeficiency virus (HIV) are living longer, healthier lives due to advancements in antiretroviral therapies and access to lifelong treatment. Yet, in rural Appalachia, access to adequate medical care is complicated by factors such as geography and lack of access to resources. The purpose of this study was to explore the perceptions of advance care planning (ACP) needs of persons living with HIV (PLWH) in Appalachian Tennessee and Alabama. Using a qualitative-descriptive design, we analyzed patterns of responses to face-to-face, semi-structured interviews of 40 PLWH as part of a larger multi-site mixed method study. Data demonstrated high patient satisfaction with medical care and good relationships with providers. However, common themes arose surrounding stigma, inadequate finances, and dislike of the term "end-of-life." Findings from this study fill a gap in the extant science pertaining to the focus of ACP in the unique population of rural Appalachia.

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.

Human papillomavirus infection, vaccination, and cervical cancer communication: the protection dilemma faced by women in southern Appalachia.

Human papillomavirus is the most frequently occurring sexually transmitted infection and has been recognized as the necessary cause of cervical cancer. Understanding the shift in public awareness caused by recent changes to cervical prevention is critical to addressing cervical cancer disparities in Appalachia. Since the human papillomavirus vaccine was approved for prevention, little data have been collected regarding human papillomavirus risk assessment and vaccine perceptions among Appalachian women. The purpose of the authors in this study was to investigate communication and cultural issues via a social scripting framework that could influence human papillomavirus vaccine uptake among southern Appalachian women; and explore participants' perceptions of human papillomavirus, cervical cancer, and the vaccine. A qualitative, descriptive design was employed to examine these issues in eight counties in northeast Tennessee and southwest Virginia. Thirty-nine women aged 18-49 years participated in a single individual interview or focus group session from October 2007 through August 2008. Interview and focus group data were audio-taped and transcribed verbatim. Two major themes emerged from the data: the human papillomavirus vaccine protection dilemma and spheres of silence surrounding the human papillomavirus vaccine protection dilemma. Study findings suggested areas for future research and may assist healthcare professionals in approaching southern Appalachian women as they make decisions regarding cervical cancer prevention.

Use of a Standardized Tool to Identify Women at Risk for Hereditary Breast and Ovarian.

OBJECTIVE: To increase rates of identification and genetic counseling referral for women at risk of hereditary breast and ovarian cancer (HBOC). DESIGN: Evidence-based practice improvement initiative. SETTING/LOCAL PROBLEM: Private suburban obstetric and gynecologic (OB/GYN) practice in Tennessee with no standardized process for HBOC risk assessment or referral to genetic services. PARTICIPANTS: Provider-led women's health care teams delivering well-woman care for women ages 18 years and older. INTERVENTION/MEASUREMENTS: We implemented the use of a standardized familial risk assessment tool and clinical decision-making algorithm. Preimplementation and postimplementation risk identification and genetic services referral rates were measured, as was clinicians' compliance with using the risk assessment tool. The aim of the initiative was to increase identification and referral rates by 25 percentage points. RESULTS: Women at risk of HBOC in the postimplementation group were 25.9 times more likely to be identified as being at risk (OR = 25.88, 95% confidence interval [10.78, 62.14]) and 31.5 times more likely to be offered referral to genetic counseling (OR = 31.50, 95% CI [13.37, 74.22]) compared with those in the preimplementation group. Rates of risk identification and referral to genetic counseling for women at risk of HBOC improved by 58.2 and 69.3 percentage points, respectively, surpassing the aims of this initiative and showing statistical significance of p < .001 for both indices. CONCLUSION: The use of a standardized risk assessment tool and process for HBOC risk identification and genetic referral resulted in a significant increase in the identification and referral of women at risk in this setting. Early identification of women with HBOC is a crucial first step in increasing the use of enhanced screening and interventions that can reduce HBOC-associated cancer morbidity and mortality.

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.