Exceptional patients and communication in cancer care-are we missing another survival factor?

OBJECTIVE: There is increased awareness of the issue of exceptional survival beyond expectations among cancer patients with poor prognosis, and researchers are starting to look closely at this phenomenon. In this study, we explored the perceptions of these "exceptional patients" as to their understanding and insight into their unusual experience. METHODS: We used a qualitative approach consisting of in-depth, open-ended interviews with exceptional patients in two locations, Texas and Israel, from 2007 to 2014. The interviews were audio-recorded and qualitatively analyzed, and gave rise to illness narratives entailing detailed descriptions of patients experience over the course of their disease and treatment. A qualitative content analysis focusing on contextual meaning was utilized. RESULTS: Twenty-nine patients participated in our study. The mean years since diagnosis was 9.55 years (range, 4-23 years). All patients had received conventional treatment, including surgery, chemotherapy, and radiation therapy. One of the prevailing themes in these interviews was related to the patient-doctor relationship. Most participants mentioned that the support they received from one or more physicians was a crucial factor for their exceptional survival. CONCLUSION: The significance of patient-doctor relationship in cancer survival requires further research. This research is especially important as it adds to the current trend of patient centered care and points to the added value of relationship between health providers and patients. This relationship, as perceived by these exceptional patients, can be a factor that adds to improved survival in cancer care.

Exceptional patients: narratives of connections.

OBJECTIVE: This study sought to better understand the patient s perspective of the experience of recovery from cancer that appeared to defy medical prognoses. METHODS: Fourteen cases of medically verified exceptional outcomes were identified. A qualitative approach, employing long narrative interviews was used. Data was analyzed using a cross case thematic analytic approach. RESULTS: The major overarching theme was connections, both internal and external. Internal included connections with God or a higher power and with oneself. The external connections, the focus of this paper, included 1) personal connections with friends and family, 2) connections with the medical system: the physician, nurses and other staff, and 3) connections with other patients. They described the nature of these relationships and the importance of frequent contact with family and friends as providing significant emotional and instrumental support. They expressed confidence in receiving care from a reputable clinic, and with very little probing illustrated the importance of the relationship with their providers. They articulated the significance of the compassionate qualities of the physician and identified communication attributes of their physician that were important in establishing this connection. These attributes were demeanor, availability, honesty, sensitivity in the decision making process. They provided examples of positive connections with nurses and other staff as well as with other patients through their illness process. SIGNIFICANCE OF RESULTS: The importance of connections in these illness narratives was richly illustrated. These issues often are overlooked in clinical settings; yet they are of crucial importance to the health and well-being of the patients.

Ethical issues of incorporating spiritual care into clinical practice.

AIMS AND OBJECTIVES: The aim of this article was to analyse the scholarly discourse on the ethical issues of incorporating spirituality and religion into clinical practice. BACKGROUND: Spirituality is an important aspect of health care, yet the secularisation of health care presents ethical concerns for many health providers. Health providers may have conflicting views regarding if and how to offer spiritual care in the clinical setting. DESIGN: Discursive paper. RESULTS: The discourse analysis uncovered four themes: ethical concerns of omission; ethical concerns of commission; conditions under which health providers prefer to offer spiritual care; and strategies to integrate spiritual care. Ethical concerns of omission of spiritual care include lack of beneficence for not offering holistic care. Ethical concerns of commission are coercion and overstepping one's competence in offering spiritual care. Conditions under which providers are more likely to offer spiritual care are if the patient has a terminal illness, and if the patient requests spiritual care. Strategies for appropriate spiritual care include listening, and remaining neutral and sensitive to spiritual issues. CONCLUSIONS: Health providers must be aware of both the concerns of omission and commission. Aristotle's golden mean, an element of virtue ethics, supports a more moderate approach that can be achieved by avoiding the imposition of one's own personal beliefs of a religious persuasion or beliefs of extreme secularisation, and focusing on the beneficence to the patient. Relevance to clinical practice. Key components for health providers in addressing spiritual concerns are self-reflection, provision of individualised care, cultural competency and communication.

Healing touch for older adults with persistent pain.

The purpose of this report was to provide an in-depth review of responses from older adults residing in long-term care facilities receiving Healing Touch (HT) for pain management. Persistent pain is common in this population and, while the mainstay for pain management is analgesics, HT may provide supportive therapy. Twenty older adults from 5 facilities in the southwestern United States participated in the study, with 12 receiving the active intervention of HT and 8 receiving the control of presence care. A convergent mixed-methods approach was used in this secondary report, using the providers' descriptions of 84 HT sessions and quantitative findings to provide an in-depth within-case analysis. Outcome measures included quantitative measures of pain, daily living, and quality of life, as well as qualitative descriptors of the HT sessions. The findings suggest that the experience is highly varied and on a continuum from no perceived or noticeable benefit to a decrease in pain and improvement in other physiological and psychosocial symptoms. Therefore, HT may be beneficial for some older adults within long-term care facilities as an adjunct for chronic pain.

Cultural cues: review of qualitative evidence of patient-centered care in patients with nonmalignant chronic pain.

The purpose of this paper was to examine published qualitative studies that explored the beliefs, values, and behaviors of patients with nonmalignant chronic pain during their interactions with the healthcare system. The findings were used as "cultural cues" to create patient-centered care. A literature review of primary qualitative studies that focused on beliefs, values, or behaviors of patients with chronic nonmalignant pain in the formal healthcare setting was conducted. CINAHL, Medline, Pubmed, PsychInfo, Sociology Abstracts, Cochrane Library Database, Proquest Dissertation and Thesis, and EmBase served as the database for the research. The findings from the studies fell into two categories: beliefs and expectations about appropriate treatment and the behaviors patients may exhibit if they perceive they are not receiving appropriate treatment. Qualitative findings showed that the beliefs, values, and behaviors of patients with nonmalignant chronic pain exhibited during their interactions with the healthcare system created a set of "cultural cues" for providers.

Medical care of hepatitis B among Asian American populations: perspectives from three provider groups.

BACKGROUND: Physicians can play a significant role in helping to decrease the hepatitis B virus (HBV) burden among Asian Americans. Few studies have described knowledge and practice patterns in the medical community among different provider types regarding HBV and liver cancer. OBJECTIVE: Our study explores the HBV beliefs, attitudes and practice patterns of medical providers serving Asian American communities. DESIGN: We conducted three focus groups with primary care providers, liver specialists, and other providers predominantly serving Asian American community. We asked about practices and barriers to appropriate medical care and outreach. PARTICIPANTS: We moderated three focus groups with 23 participants, 18 of whom completed and returned demographic surveys. Twelve were of Asian ethnicity and 13 spoke English as a second language. Only eight screened at least half of their patients, most (72%) using the hepatitis B surface antigen test. APPROACH: We used grounded theory methods to analyze focus group transcripts. RESULTS: Participants frequently discussed cultural and financial barriers to hepatitis care. They admitted reluctance to screen for HBV because patients might be unwilling or unable to afford treatment. Cultural differences were discussed most by primary care providers; best methods of outreach were discussed most by liver specialists; and alternative medicine was discussed most by acupuncturists and other providers. CONCLUSIONS: More resources are needed to lower financial barriers complicating HBV care and encourage providing guideline-recommended screenings. Other providers can help promote HBV screening and increase community and cultural awareness.

Spiritual practices in self-management of diabetes in African Americans.

In this qualitative study, African Americans described 3 orientations about spiritual practices and diabetes self-management: Spiritual practice as effort toward self-management; spiritual practice and self-management as effort toward healing; and spiritual practice as effort toward healing. Spiritual practices may influence diabetes self-management in African Americans and be a resource in care.

Hispanic Parental Beliefs and Practices in the Management of Common Childhood Illnesses: A Review of the Literature.

Introduction: Hispanic parents are more likely to perceive common childhood illnesses as serious and needing immediate attention compared with other groups. The purpose of this review is to describe the factors that influence Hispanic parental management of common childhood illnesses. Method: A systematic search of PubMed, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature was conducted. Studies were screened and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Results: Fifteen studies met the inclusion criteria for synthesis. Key findings include the following: (a) parental fears around common illnesses, (b) belief in folk illnesses, (c) use of traditional healers and remedies, (d) family members as a source of health information, (e) medical pluralism, and (f) barriers to care. Conclusion: Hispanic parents simultaneously engage both biomedical and folk spheres of treatment. More current research is needed to understand Hispanic beliefs and practices and to formulate culturally sensitive interventions in this population.

Steps in Developing a Patient-Centered Measure of Hospital Design Factors.

Patients and families are at the center of care and have important perspectives about what they see occurring surrounding their healthcare, yet organizations do not routinely collect such perspectives from patients/families. Creating patient-centered measures is essential to understanding what they perceive about the environment as well as achieving the goal of patient-centered care. We focus this research methodology column on describing a four-step medical ethnography approach that can be used in developing patient-centered measures of interest to those studying built environments. In this column, we use this approach to illustrate how one might develop a measure that can be used to understand parent perceptions of the safety culture in neonatal intensive care units.

Treatment recidivism in adolescents with mental illness: A focused applied medical ethnography.

PROBLEM: Treatment recidivism, described as frequent unplanned relapse readmissions, is a national problem predominant in adolescents with mental illness. Because the main triggers of treatment recidivism are not fully understood, the purpose of this study was to explore treatment recidivism (i) to better understand treatment recidivism from the perspectives of recidivist adolescents with mental illness, (ii) to describe major factors that contribute to treatment recidivism and how best to minimize them from the perspectives of these adolescents, and (iii) to describe their interaction with the medical culture. METHODS: A focused applied medical ethnography was used to study 16 purposively selected adolescents. Interviews were conducted together with unobtrusive unit observation of the participants and collection of demographic and clinical information. FINDINGS: The participants were nearly unanimous in identifying the "additional stressors" of problematic parental relations and school bullying as the main triggers of treatment recidivism over and above their "routine stressors" of adolescence and mental illness. They had mixed perceptions of treatment recidivism and described their interaction with the medical culture as positive. CONCLUSION: Further research is needed to determine the impact of parental relations and school bullying on recidivism in adolescents with mental illness.

A framework for cultural competence in advanced practice psychiatric and mental health education.

TOPIC: Cultural competence in psychiatric advanced practice education. PURPOSE: To present a framework for educators to use when addressing culturally competent advanced psychiatric nursing practice. SOURCES: NONPF competencies, published literature, and Web resources. CONCLUSIONS: Development of cultural competence is an important link to the reduction of mental health disparities. Situating the advanced nursing practice process within a negotiating space allows for incorporation of cultural information into patient care. The framework presented in this paper provides a theoretical and practical approach to orienting students to meeting the elements of cultural competence set out in the NONPF recommendations.

Exploring the skin-to-skin contact experience during cesarean section.

PURPOSE: To explore and describe the mother's experience of holding her neonate in skin-to-skin contact (SSC) immediately after cesarean delivery during surgical closure and recovery. DATA SOURCES: Eleven women between the ages of 23 and 38 years, who had achieved 39.1-40.2 weeks gestational age, participated in an ethnographic study using observations and interviews with the mothers conducted at 24-48 h postdelivery. Interviews were transcribed verbatim and content analysis of both observational notes and transcripts were used to analyze the data. CONCLUSIONS: Findings from this study describe the mother's experience of SSC during cesarean section. The primary theme that emerged was mutual caregiving: the mother-neonatal interaction and their shared and reciprocal relationship and benefits during SSC. Two contextual issues also were illuminated (a) the father's influence on the SSC experience and (b) the cesarean environment. IMPLICATIONS FOR PRACTICE: With cesarean section the most common surgical procedure among American women, advanced practice nurses are in a unique position to encourage and educate women on the use of SSC for their benefit and that of their newborn. Advanced practice nurses are also empowered to influence institutional policy on SSC during cesarean deliveries at the local and national level.

Exploring the Cancer Experiences of Young Adults in the Context of Stem Cell Transplantation.

BACKGROUND: Cancer is the leading cause of nonaccidental morbidity and mortality among young adults (YAs) in the United States. Stem cell transplantation (SCT), a treatment modality for a variety of YA malignancies, often requires prolonged hospitalization and immune-compromising treatment regimens. Stem cell transplantation may isolate YAs physically and emotionally, contributing to uncertainty about treatment processes, outcomes, and long-term sequelae. Studies in this population suggest that uncertainty can contribute to difficulty accomplishing basic developmental tasks. Few studies have examined the experiences of YAs in active cancer treatment, particularly those undergoing SCT. OBJECTIVES: This study explored the cancer experiences of YAs aged 18 to 25 years leading up to SCT and explored how YAs construct issues of uncertainty related to the transplantation experience. METHODS: Interviews with 14 YAs conducted within 24 hours of admission to undergo SCT were analyzed using thematic analysis from a medical ethnographic perspective. RESULTS: Themes emerged within 2 domains: relational and psychoemotional. The relational theme of "altered relationships" included the subthemes of "moving from" and "moving toward." The psychoemotional theme of the "power of perspective" included the subthemes of "optimism," "acknowledgment of death," "informational empowerment," and "developing a new outlook." CONCLUSIONS: Our findings offer new insights into the YA experience in the context of active cancer treatment, specifically how the cancer experience impacts relationships and how this experience is influenced by YAs' perspectives. IMPLICATIONS FOR PRACTICE: This study provides a foundation for addressing the psychosocial needs of YAs hospitalized for SCT, paying particular attention to the development of specific interventions.

Understanding of advance care planning by family members of persons undergoing hemodialysis.

The purpose of this qualitative descriptive study was to explore hemodialysis patients' family members' understanding of end-of-life decision-making processes. The project aimed to address (a) family members' constructions of advance care planning (ACP), including their roles and responsibilities, and (b) family members' perceptions of health care providers' roles and responsibilities in ACP. Eighteen family members of persons undergoing hemodialysis were recruited primarily from outpatient dialysis facilities and interviewed individually. Confirmed transcript data were analyzed, coded, and compared, and categories were established. Interpretations were validated throughout the interviews and peer debriefing sessions were used at a later stage in the analysis. The overarching construct identified was one of Protection. Family members protect patients by (a) Sharing Burdens, (b) Normalizing Life, and (c) Personalizing Care. Recommendations for future research include the need to explore ACP of persons undergoing hemodialysis who do not have a family support system.

"I'm just not that sick": pain medication and identity in Mexican American women with chronic pain.

PURPOSE: To describe the beliefs and attitudes about self-identity and pain medication in a sample of Mexican American women with chronic pain living in the El Paso, Texas, area. The findings are drawn from a larger qualitative study of 15 women describing the expression and communication of chronic pain symptoms, pain-related cultural beliefs, decision making, and treatment preferences of chronic pain. METHODS: Participants who had chronic pain syndromes for at least 1 year were recruited from a pain clinic and fibromyalgia support group. In-depth, open-ended interviews, fieldwork, and participant observation were used to gather information using a focused clinical ethnographic approach. Interviews were audiotaped and transcribed verbatim. FINDINGS: A shared central theme was controlling the use of pain medications to control perceived negative associations with pain medication. The negative associations resulted in women rejecting use of medication to preserve their legitimate identity. This perception can be destructive and can lead to poor pain control. CONCLUSION: Providing patients with anticipatory guidance about common barriers to taking pain medication may allow medication use consistent with improved pain control.

Facilitating risk reduction among homeless and street-involved youth.

PURPOSE: The purposes of this evaluation project were to describe a group of homeless adolescents and street-involved youth who utilized a mobile unit that provided medical and mental healthcare services and to assess the efficacy of the services provided in reducing their health risk behaviors. DATA SOURCES: The records of 95 youth aged 15-25 years who used the medical mobile unit for an average of 14 months were examined and evaluated according to the national health indicators related to risk reduction. Current literature related to health risk behavior among homeless youth was reviewed, synthesized, and provided the background for this article. CONCLUSIONS: Data were obtained from the records of mostly heterosexual youth with a mean age of 20.5 years. Approximately one third of the participants were high school graduates and most were without health insurance. Living situations were transient including friends, shelters, crash pads, or the streets. Abuse accounted for the majority leaving home. Psychiatric conditions and substance abuse were common. Medical conditions were related to transient living situations, substance abuse, and sexual activity. Success of the program was associated with sustained counseling, stabilizing youth on psychotropic medications, decreasing substance use, providing birth control and immunizations, and treating medical conditions. IMPLICATIONS FOR PRACTICE: Homeless youth are one of the most underserved vulnerable populations in the United States with limited access and utilization of appropriate healthcare services. Nurse practitioners often serve as care providers but are also in a position to effectively lobby to improve health care for homeless youth through professional organizations and community activism. Furthermore, when designing and evaluating healthcare services, multidisciplinary teams need to consider risk reduction for homeless youth in the context of their environment.

Spasticity experience domains in persons with spinal cord injury.

OBJECTIVE: To understand the everyday life experiences of persons who have spasticity associated with spinal cord injury (SCI). DESIGN: Applied ethnographic design. SETTING: Patients' homes and rehabilitation clinics. PARTICIPANTS: Twenty-four people with SCI who experience spasticity. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Domains identified through qualitative analysis of in-depth open-ended interviews. RESULTS: Domain analysis revealed 7 domains: physical, activity, emotional, economic, interpersonal, management, and cognitive. Descriptive subcategories within each domain were identified. Patients personalized the meaning of spasticity and expressed their understandings of the condition in ways that may not be consistent with clinical definitions. Some patients suggested that being able to control spasticity was preferable to total suppression. CONCLUSIONS: Spasticity-related interventions need to be aimed at what matters most to the patient. It is critical for clinicians to understand patients' experiences to make accurate assessments, effectively evaluate treatment interventions, and select appropriate management strategies. When providers reconfigure patients' descriptions to fit neatly with a biomedical understanding of spasticity without carefully assessing the descriptions in terms of what matters most to patients, a potential risk for misappropriating interventions may arise.