Health-related quality of life over chemotherapy course among individuals with early-stage breast cancer: the association of social determinants of health and neighborhood socioeconomic disadvantage.

PURPOSE: This study aimed to examine relationships between health-related quality of life (HRQOL), social determinants of health, and neighborhood socioeconomic disadvantage in individuals with early-stage breast cancer (ESBC) during chemotherapy. METHODS: This is a longitudinal study that recruited Black and White women with ESBC receiving chemotherapy. Participants completed questionnaires recording their sociodemographic information at baseline and the Functional Assessment of Cancer Therapy-General (FACT-G) to report their HRQOL before each chemotherapy cycle. Linear mixed modeling was employed to examine the associations between FACT-G scores, self-reported race, and area deprivation index (ADI) before and at the last chemotherapy cycle, with the duration of chemotherapy treatment as a covariate. RESULTS: A total of 84 Black and 146 White women with ESBC completed the surveys. Linear mixed modeling results suggested that women with ESBC who reported being Black experienced significantly worse physical well-being than those who reported being White throughout chemotherapy, with a 0.22-point lower average (p = 0.02). Both Black and White women with ESBC experienced decreased functional well-being over the chemotherapy, and Black women consistently reported lower scores than White women, with the change in functional well-being over time differing between racial groups (p = 0.03). Participants' ADI national percentiles were not significantly associated with their HRQOL throughout chemotherapy. CONCLUSIONS: These findings underscore possible racial differences in some dimensions of HRQOL during chemotherapy among women with ESBC. Future research should consider further assessing life stressors and past experiences of discrimination and racism that may contribute to these disparities and guide proactive interventions.

Being a "Good Parent" to a NICU Infant With a Major Congenital Anomaly.

BACKGROUND: In the United States, up to one-third of infants with a congenital anomaly require neonatal intensive care unit (NICU) hospitalization. Parents of these infants may have different decision-making priorities, which may be influenced by the timing of the infant's diagnosis. PURPOSE: (1) To compare the ranked importance of decision-making beliefs for parents of infants who received a prenatal versus postnatal congenital diagnosis and (2) explore how parents describe their decision-making beliefs. METHODS: A cross-sectional, sequential mixed-methods pilot design was applied to collect quantitative data using the Good Parent Ranking Exercise and further explore parents' decision-making beliefs through qualitative interviews. Maximum difference scaling/hierarchical Bayes estimation and content analysis were used to analyze the quantitative and qualitative data, respectively. RESULTS: Forty mothers completed the Good Parent Ranking Exercise and 20 mothers completed qualitative interviews. Four of the top 5 ranked parenting beliefs were shared by mothers in the prenatal and postnatal groups. Mothers in the postnatal group ranked "focusing on my child's quality of life" higher. Qualitative interviews revealed that previously identified decision-making beliefs were consistent in this NICU parent population, with 1 additional belief identified. Mixed-methods analysis revealed high concordance between the prenatal and postnatal groups. IMPLICATIONS FOR PRACTICE: NICU nurses need to know that decision-making beliefs for parents who receive a prenatal versus postnatal congenital diagnosis, while largely similar, may have differences. IMPLICATIONS FOR RESEARCH: Future research should explore decision-making beliefs in demographically diverse parent groups (ie, fathers, partnered vs nonpartnered couples) and effective strategies for promoting NICU parents' decision-making beliefs.

African American Women Breast Cancer Survivors: Coping with the COVID-19 Pandemic.

African American women breast cancer survivors are among those with the greater burden of cancer. Breast cancer is the second leading cause of death among black women, and this death rate is 40% higher than that of white women. The COVID-19 pandemic increased the burden of morbidity and mortality among this population of cancer survivors. In this report, we explore the ways in which the COVID-19 pandemic was a source of stress for African American women breast cancer survivors and their subsequent responses to these stressors. This is a qualitative descriptive study with content analysis of data from the narratives of 18 African American breast cancer survivors. Participants were interviewed via phone and video conferencing platform and asked questions related to their experiences with the COVID-19 pandemic. The findings suggest stressors associated with (1) potential COVID-19 spreaders in their immediate environments; (2) closures and restricted access to social- and faith-based activities; (3) televised news broadcasts of COVID-19; and (4) disruptions to planned cancer prevention and control healthcare. Three categories emerged that captured the ways in which these women responded to stressors during the early phase of this pandemic: (1) seeking control in their social environments; (2) following the rules; and (3) seeking support from God, family, and friends. These findings can be used to better support breast cancer patients during the early phases of a pandemic.

Using Spirituality to Cope with COVID-19: the Experiences of African American Breast Cancer Survivors.

African American women with breast cancer generally rely on their spirituality to cope with psychosocial issues encountered during survivorship. However, in order to mitigate the risk of contracting COVID-19, a potentially deadly disease, it is imperative that community-dwelling older adults physically distance themselves from supportive family, friends, and even traditional faith-based activities. In this report, we explore the ways in which spirituality was used to manage stressors during this pandemic. This is a qualitative descriptive study with content analysis of data from the narratives from 18 African American breast cancer survivors. Participants were interviewed via phone and video conferencing platform and asked to respond to questions of strategies used to manage stressors encountered during this COVID-19 pandemic. Spirituality enabled African American breast cancer survivors to better manage their psychological distress through (1) increased engagement in religious activities; (2) reliance on God for protection when fearful, feeling isolated, and in need of assistance to pay household bills; (3) finding joy and courage from listening to gospel music and reading scripture; and (4) finding meaning through spirituality. These findings suggest that in spite of physical distancing requirements that impose limited access to faith-based institutions during this COVID-19 pandemic, spirituality continues to be a supportive resource to manage emotional stressors.

An Exploration of Suffering and Spirituality Among Older African American Cancer Patients as Guided by Howard Thurman's Theological Perspective on Spirituality.

The use of the religious experience to mitigate suffering within the context of a cancer diagnosis and treatment is poorly understood. Specifically, in this article, we explore suffering and the religious experience using Howard Thurman's theological perspective. This perspective permits an exploration of the ways in which spirituality enables African American cancer patients to better manage suffering through: (1) a positive self-image as a child of God or the identification with the sufferings of Jesus; (2) seeking harmony in one's environment; (3) the use of spirituality as self-nourishment; and, (4) the perspective of suffering as sacrament. In this paper, we use the narratives of African American cancer patients to argue that these theological perspectives are indeed relevant to the relief of suffering among this population.

Training to Conduct Research on Religion, Spirituality and Health: A Commentary.

Scientific research on religion, spirituality and health is fundamental, or our health care systems will become spuriously tokenistic rather than being truly holistic. Likewise, training in scientific research with respect to the interconnection between religion/spirituality and health, is also essential so as to ensure the future inclusion and development of religion and spirituality across the disciplines of medicine, nursing, psychology, social work, pastoral/spiritual care, and other allied health disciplines. This paper describes research training programs now available to obtain the skills and knowledge to develop, fund, manage, and publish research in this area, and disseminate it to clinicians and the general public. First, a model research program is described, and then, three examples of training programs at Duke, Emory, and Yale University are presented. Such training programs seek to develop the next generation of researchers who will dedicate their lives and careers to conducting research on religion and health, teaching it to students, and integrating the findings into clinical practice both in the USA and around the world. Scholarships are now available for health professionals to obtain such training, particularly for academic scholars early in their careers (e.g., graduate students, junior faculty) and for more senior researchers wishing to conduct studies in this area. Nearly 80% of the world's population have religious or spiritual beliefs that influence their health and well-being in one way or another. Learning to carry out and publish systematic research will help fill the many gaps in knowledge concerning how religion affects health and health affects religion.

Rigor in Qualitative Methods: An Evaluation of Strategies Among Underrepresented Rural Communities.

Achieving rigor using selected criteria to determine trustworthiness using qualitative methods has been without critical evaluation. In this article, strategies such as prolonged engagement and thick, rich description; negative case analysis; peer review or briefing; clarifying researcher bias; member checking; and, investigator triangulation and intercoder reliability are evaluated for appropriateness among an African American Appalachian rural population. Achieving rigor using qualitative methods among participants living in rural communities is time intensive requiring attention to quality versus quantity of time spent in interviews, building trusting relationships, an awareness of interviewer bias and assumptions, and appropriately evaluated strategies that enhance validity. Strategies to achieve rigor in qualitative methods should not be used as a one size fits all approach as this practice might actually diminish rigor. Among underrepresented populations, strategies should be adapted or not used at all.

The Use of Prayer During Life-Threatening Illness: A Connectedness to God, Inner-Self, and Others.

To explore how prayers were used as expressions of spirituality among community-dwelling African Americans in response to life-threatening illness. Fifty-eight older African American adults residing in the Southeastern US participated in a qualitative descriptive study. Through prayers, participants requested the strength to endure, protection, healing and expressed gratitude. Prayers were expressions of spirituality through dimensions of connectedness: transpersonally to God or the unseen; intrapersonally to one's inner-self; and, interpersonally to others. Prayers are an important aspect of spirituality and the mental health of older African Americans particularly during serious, life-threatening illness. An understanding of the ways in which prayers are used might enhance the cultural relevance of mental health interventions in this population.

HPV vaccine acceptance among African-American mothers and their daughters: an inquiry grounded in culture.

BACKGROUND: Much of the research on African-Americans' HPV vaccine acceptance has largely focused on racial/ethnic differences related to cognitive, socio-economical, and structural factors that contribute to differences in HPV vaccine acceptance and completion. A growing body of literature suggest that cultural factors, such as mistrust of healthcare providers (HCPs) and the healthcare system, religion, and social norms related to appropriate sexual behaviors, also plays a prominent role in their HPV vaccine acceptance. However, these studies were limited in their use of theoretical approaches necessary to conceptualize and operationalize culture. OBJECTIVE: To explore the influence of culture on African-American mothers' and daughters' HPV vaccine acceptance using the PEN-3, a culturally-centered conceptual framework. METHODS: Grounded theory techniques were used to explore cultural factors that influenced the acceptance of the HPV vaccine among African-American mothers (n = 28) and their daughters (n = 34). RESULTS: Positive attitudes towards vaccination stemmed from beliefs that the HPV vaccine has cancer prevention benefits and that vaccinations in general protected against infectious diseases. Negative attitudes stemmed from beliefs that the HPV vaccine was too new, not effective, daughters were too young, and that vaccines were not a one-size-fits-all intervention. Majority of mothers and daughters indicated that their religious doctrine did not impede their HPV vaccination decisions. For a few mothers, religious beliefs could not be separated from their HPV vaccination decisions and ultimately deterred HPV vaccine acceptance. HCP recommendations were valued however mothers were often dissatisfied with the detail of information communicated. Support networks provided both positive and negative types of social support to mothers and daughters. The media highlighted the cancer prevention benefits of the HPV vaccine and unintentionally communicated negative information of the HPV vaccine, which deterred HPV vaccine acceptance. CONCLUSION: Study findings can inform the development of culturally appropriate interventions that advances the evidence on cervical cancer prevention.

African-American parents' and daughters' beliefs about HPV infection and the HPV vaccine.

OBJECTIVE: To increase our understanding about the health beliefs of African-American parents and their daughters toward HPV infection and HPV vaccine acceptance. METHODS: The Health Belief Model was used as a guiding framework. Principles of grounded theory, theoretical sampling, and constant comparison analysis were used to qualitatively analyze data generated from personal interviews of African-American parents (n = 30) and their 12- to 17-year-old daughters (n = 34). RESULTS: Mothers and daughters perceived low susceptibility to HPV infection and perceived the HPV vaccine as beneficial in protecting against genital warts and cervical cancer. Compared to daughters, parents placed particular emphasis on the vaccine's protection against genital warts. A major HPV vaccine acceptance barrier among parents and daughters was the politicization of the HPV vaccine by government figures. In addition, concerns about unknown side effects, safety, and effectiveness of HPV vaccination emerged. Cues to action varied among parents and daughters, and self-efficacy was higher among parents than daughters. CONCLUSION: Understanding the health beliefs that promote HPV vaccine acceptance, while identifying and addressing beliefs that are barriers among parents and daughters, will assist in the development of appropriate HPV vaccine promotion initiatives for African-American parents and daughters.

Hypertension among adults living in Haiti: An integrative review.

AIMS AND OBJECTIVES: To determine what is known about hypertension among adults living in Haiti. BACKGROUND: Hypertension is the leading cause of morbidity, the identified cause of heart failure in 45% of patients and is associated with more than 70% of cardiovascular disease-related hospital admissions in Haiti. DESIGN: An integrative review of the literature. METHODS: Searching four databases from 2007 to 2018, Whittemore and Knafl's method was used to review the literature. Three nurse researchers independently reviewed and appraised each publication applying the Johns Hopkins Evidence-based Practice Appraisal tool. RESULTS: Eight publications were identified and appraised for level and quality of evidence. The synthesis of the literature yielded common themes of (i) high prevalence of hypertension among adults living in rural areas, (ii) public health challenges, (iii) lack of knowledge and awareness of hypertension and (iv) barriers to effective treatment. CONCLUSION: Hypertension is a highly prevalent disease in Haiti that is understudied and warrants attention. To better serve this vulnerable population, culturally tailored prevention strategies and disease management programmes are recommended. RELEVANCE TO CLINICAL PRACTICE: There is a lack of quality evidence to guide nurses in the management of hypertension for this vulnerable population. Identification of barriers to effective treatment among this underserved population will assist nurses and other healthcare professionals in identifying best possible practices for patient care in clinical settings across Haiti.

Making sense of loss through spirituality: Perspectives of African American family members who have experienced the death of a close family member to cancer.

OBJECTIVE: Among African Americans, spirituality is meaning or purpose in life and a faith in God who is in control of health and there to provide support and guidance in illness situations. Using qualitative methods, we explored the use of spirituality to make sense of the end-of-life and bereavement experiences among family members of a deceased cancer patient. METHOD: Data in this report come from 19 African Americans who experienced the loss of a family member to cancer. A qualitative descriptive design was used with criterion sampling, open-ended semistructured interviews, and qualitative content analysis. RESULTS: Participants made sense of the death of their loved one using the following five themes: Ready for life after death; I was there; I live to honor their memory; God's wisdom is infinite; and God prepares you and brings you through. These five themes are grounded in conceptualizations of spirituality as connectedness to God, self, and others.Significance of resultsOur findings support the results that even during bereavement, spirituality is important in the lives of African Americans. African American family members might struggle with issues related to life after death, their ability to be physically present during end-of-life care, and disentangling beliefs around God's control over the beginning and ending of life. The findings in this report can be used to inform healthcare providers to better support and address the needs for support of African American family members during end-of-life and bereavement experiences.

Messages of Hope: Helping Family Members to Overcome Fears and Fatalistic Attitudes Toward Cancer.

This qualitative study explored strategies family members of African-American cancer patients used to overcome their fears and fatalistic attitudes toward cancer. Twenty-four family members were recruited through criterion purposeful sampling. Data were collected and analyzed using open-ended interviews and thematic analysis. Fears and fatalistic attitudes could be traced to personal experiences with cancer and information being communicated within their networks. Strategies used to overcome fears and fatalistic attitudes toward cancer included an awareness of advances in cancer treatments, information obtained from their health-care providers, and faith in God. Family members supported the patient through efforts of encouraging them to talk about what they were going through, to be strong, to maintain a positive environment and normalcy, and to use spirituality as a source of strength. Family members also suggested that health-care providers and researchers tailor intervention studies to consider that the patient is a part of a larger family system and that the entire family needs support to overcome long-held fears and fatalistic attitudes toward cancer. These findings suggest that despite advances in cancer care and widespread media coverage to change perceptions about cancer, fears and fatalistic attitudes toward cancer persist and likely influence the family members' ability to optimally support the cancer patient. At the time of diagnosis, both patient and the entire family unit should be educated of advances in cancer care, that cancer is no longer a death sentence, and supported to overcome fears and fatalistic attitudes.

Younger African American Adults' Use of Religious Songs to Manage Stressful Life Events.

The aim of this study was to explore the use of religious songs in response to stressful life events among young African American adults. Fifty-five young African American adults aged 18-49 participated in a qualitative study involving criterion sampling and open-ended interviews. Data analysis included content analysis and descriptive statistics. Stressful life events were related to work or school; caregiving and death of a family member; and relationships. Religious songs represented five categories: Instructive, Communication with God, Thanksgiving and Praise, Memory of Forefathers, and Life after Death. The tradition of using religious songs in response to stressful life events continues among these young adults. Incorporating religious songs into health-promoting interventions might enhance their cultural relevance to this population.

Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates.

BACKGROUND: Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. STUDY DESIGN: A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. SETTING & PARTICIPANTS: 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. INTERVENTION: Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. PRIMARY OUTCOMES: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. SECONDARY OUTCOMES: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. PRIMARY OUTCOMES: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (ß=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (ß=-0.01; 95% CI, -0.12 to 0.10). SECONDARY OUTCOMES: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (ß=-1.13; 95% CI, -2.23 to -0.03), depression (ß=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (ß=-5.75; 95% CI, -10.9 to -0.64) than controls. LIMITATIONS: Study was conducted in a single US region. CONCLUSIONS: SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.

Strategies African-American Cancer Survivors Use to Overcome Fears and Fatalistic Attitudes.

This qualitative study explored strategies African-American cancer survivors use to overcome their fears and fatalistic attitudes toward cancer at the point of diagnosis through completion of treatment. Thirty-one African-American cancer survivors who had completed or nearly completed treatment were recruited through criterion purposeful sampling. In-depth, open-ended interviews were used to collect data. The data were analyzed using thematic analysis. Of the 31 survivors interviewed, 26 reported being fearful of cancer and believed that cancer would result in death. These cancer survivors were particularly fearful of having a cancer had spread, of being isolated, and performing less effectively at work. Strategies used to overcome these fears included increasing their own awareness about cancer, using positive self-talk, and avoiding negative people. The findings suggest that past experiences continue to influence fears and fatalistic perspectives about cancer and that educational resources to inform the public about cancer may be ignored until there is a confirmed diagnosis of cancer. Televised news broadcasts of high-profile personalities who had died from cancer were also anxiety provoking, particularly if the cancer survivor died of a recurrence from cancer. Prevalent sources of information and support for these survivors were family members or close friends they trusted with personal information, perceived as strong, or experienced in the care of other cancer survivors.

African-American Cancer Survivors' Use of Religious Beliefs to Positively Influence the Utilization of Cancer Care.

Among African-Americans, religion impacts health-seeking behaviors. This qualitative study used criterion purposeful sampling and thematic analysis in analysis of data from 31 African-American cancer patients to understand the influence of religion on the utilization of cancer care services. Our findings suggest that religious beliefs and practices positively influenced attitudes toward their illness and ability to endure treatment. God's ability to heal and cure, God's control over survival, God's will over their lives, and God's promise for health and prosperity were examples of survivor's religious beliefs. Religious practices such as prayer promoted a trusting relationship with healthcare providers and were a source of strength and encouragement.