Moral distress perspectives among interprofessional intensive care unit team members.

AIM: To examine interprofessional healthcare professionals' perceptions of triggers and root causes of moral distress. DESIGN: Qualitative description of open-text comments written on the Moral Distress Scale-Revised survey. METHODS: A subset of interprofessional providers from a parent study provided open-text comments that originated from four areas of the Moral Distress Scale-Revised, including the margins of the 21-item questionnaire, the designated open-text section, shared perceptions of team communication and dynamics affecting moral distress, and the section addressing an intent to leave a clinical position because of moral distress. Open-text comments were captured, coded, and divided into meaning units and themes using systematic text condensation. PARTICIPANTS: Twenty-eight of the 223 parent study participants completing the Moral Distress Scale-Revised shared comments on situations contributing to moral distress. RESULTS: All 28 participants working in the four medical center intensive care units reported feelings of moral distress. Feelings of moral distress were associated with professional anguish over patient care decisions, team, and system-level factors. Professional-level contributors reflected clinician concerns of continuing life support measures perceived not in the patient's best interest. Team and unit-level factors were related to poor communication, bullying, and a lack of collegial collaboration. System-level factors included clinicians feeling unsupported by senior administration and institutional culpability as a result of healthcare processes and system constraints impeding reliable patient care delivery. ETHICAL CONSIDERATIONS: Approval was obtained from the Institutional Review Board (IRB) of the University of Texas Health IRB and the organization in which the study was conducted. CONCLUSION: Moral distress was associated with feelings of anguish, professional intimidation, and organizational factors that impacted the delivery of ethically based patient care. Participants expressed a sense of awareness that they may experience ethical dilemmas as a consequence of the changing reality of providing healthcare within complex healthcare systems. Strategies to combat moral distress should target team and system interventions designed to improve interprofessional collaboration and support professional ethical values and moral commitments of all healthcare providers.

An Ethnography of Parents' Perceptions of Patient Safety in the Neonatal Intensive Care Unit.

BACKGROUND: Parents of neonates are integral components of patient safety in the neonatal intensive care unit (NICU), yet their views are often not considered. By understanding how parents perceive patient safety in the NICU, clinicians can identify appropriate parent-centered strategies to involve them in promoting safe care for their infants. PURPOSE: To determine how parents of neonates conceptualize patient safety in the NICU. METHODS: We conducted qualitative interviews with 22 English-speaking parents of neonates from the NICU and observations of various parent interactions within the NICU over several months. Data were analyzed using thematic content analysis. Findings were critically reviewed through peer debriefing. FINDINGS: Parents perceived safe care through their observations of clinicians being present, intentional, and respectful when adhering to safety practices, interacting with their infant, and communicating with parents in the NICU. They described partnering with clinicians to promote safe care for their infants and factors impacting that partnership. We cultivated a conceptual model highlighting how parent-clinician partnerships can be a core element to promoting NICU patient safety. IMPLICATIONS FOR PRACTICE: Parents' observations of clinician behavior affect their perceptions of safe care for their infants. Assessing what parents observe can be essential to building a partnership of trust between clinicians and parents and promoting safer care in the NICU. IMPLICATIONS FOR RESEARCH: Uncertainty remains about how to measure parent perceptions of safe care, the level at which the clinician-parent partnership affects patient safety, and whether parents' presence and involvement with their infants in the NICU improve patient safety.

Interconnection: A qualitative analysis of adjusting to living with renal cell carcinoma.

ABSTRACTObjective:Adjusting to cancer is an ongoing process, yet few studies explore this adjustment from a qualitative perspective. The aim of our qualitative study was to understand how patients construct their experience of adjusting to living with cancer. METHOD: Qualitative analysis was conducted of written narratives collected from four separate writing sessions as part of a larger expressive writing clinical trial with renal cell carcinoma patients. Thematic analysis and constant comparison were employed to code the primary patterns in the data into themes until thematic saturation was reached at 37 participants. A social constructivist perspective informed data interpretation. RESULTS: Interconnection described the overarching theme underlying the process of adjusting to cancer and involved four interrelated themes: (1) discontinuity-feelings of disconnection and loss following diagnosis; (2) reorientation-to the reality of cancer psychologically and physically; (3) rebuilding-struggling through existential distress to reconnect; and (4) expansion-finding meaning in interconnections with others. Participants related a dialectical movement in which disruption and loss catalyzed an ongoing process of finding meaning. SIGNIFICANCE OF RESULTS: Our findings suggest that adjusting to living with cancer is an ongoing, iterative, nonlinear process. The dynamic interactions between the different themes in this process describe the transformation of meaning as participants move through and revisit prior themes in response to fluctuating symptoms and medical news. It is important that clinicians recognize the dynamic and ongoing process of adjusting to cancer to support patients in addressing their unmet psychosocial needs throughout the changing illness trajectory.

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.

Experiences of paradox: a qualitative analysis of living with cancer using a framework approach.

OBJECTIVES: Life-threatening diseases such as cancer represent unique traumas-compared with singular, time-limited traumatic events-given their multidimensional, uncertain, and continuing nature. However, few studies have examined the impact of cancer on patients as a persistent stressor. The aim of this qualitative study is to explore patients' ongoing experiences of living with cancer and the changes encountered in this experience over time. METHODS: Written reflections to three open-ended questions collected from 28 patients on their experience of cancer at two time points were analyzed to explore participants' experiences and perspectives over time. Content analysis using a framework approach was employed to code, categorize, and summarize data into a thematic framework. RESULTS: Data analysis yielded the thematic framework-living with paradox, consisting of four interrelated themes: sources, experiences, resolution of paradox, and challenges with medical culture/treatment. The primary theme concerned moving through a dualistic and complex cancer experience of concurrently negative and positive emotional states across the course of cancer. CONCLUSIONS: Respondents indicated that cycling through this contradictory trajectory was neither linear, nor singular, nor conclusive in nature, but reiterative across time. Recognition that patients' cancer experience may be paradoxical and tumultuous throughout the cancer trajectory can influence how practitioners provide patients with needed support during diagnosis, treatment, and recovery. This also has implications for interventions, treatment, and care plans, and adequately responding to the diversity of patient's psychosocial, physical, existential, and spiritual experience of illness.

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.

Understanding Diabetes Self-Management Among Vietnamese Americans: A Focused Ethnography.

INTRODUCTION: The Vietnamese American (VA) population is projected to grow to 3.9 million by 2030. This demographic shift could affect health care cost as VAs have greater susceptibility for type 2 diabetes mellitus (T2DM). Few studies have explored diabetes self-management (DSM) among VAs. The aim of this study was to explore and describe how VAs with T2DM perceive diabetes and DSM practices. METHOD: A focused ethnographic design, using semi-structured interviews and participant observation, was used to understand DSM among VAs. RESULTS: The following four themes emerged: (a) defining diabetes and its etiology, (b) body awareness as a way of managing diabetes, (c) maintaining strength after being diagnosed with diabetes, and (d) navigating sources of information regarding diabetes. DISCUSSION: The study findings suggest that DSM is a complex and recursive process, with integrations of cultural practices and influences from the environment. These findings can help the development of culturally tailored interventions to assist with DSM.

Psychosexual responses to BRCA gene mutations in women of childbearing age.

BACKGROUND: Diagnosis of a BRCA gene mutation presents a dilemma because life-changing medical decisions must be made to prevent breast and ovarian cancer. There is minimal evidence regarding how psychosexual functioning, psychological well-being with regard to body image and sexuality, affects the decision to have prophylactic treatment in women of childbearing age (WCBA; 18-49 years) with a BRCA gene mutation. PURPOSE: To explore, describe, and interpret the experience of women with a BRCA mutation during the treatment and decision-making process. METHODOLOGY: A qualitative descriptive design was used to recruit participants online through social media postings and from national and local BRCA support groups. Participants participated in semistructured interviews exploring their experience after BRCA diagnosis. Interpretive descriptive analysis was used to identify themes. RESULTS: The purposive sample comprised 18 women aged 21-49 years. Four major themes, such as body image, sexuality, femininity, and childbearing/childrearing, were identified that influenced decisions related to the diagnosis and management of a BRCA mutation. All participants voiced that concerns regarding body image and sexuality caused hesitancy in their decision to have prophylactic surgery. Women who had undergone bilateral prophylactic mastectomy were concerned about the impact of the surgery, scarring, breast disfigurement, and the lack of sensation resulting from surgical intervention. CONCLUSIONS: Psychosexual concerns arise from internal and external influences that significantly affect the decision to undergo prophylactic measures. Therefore, body image, sexuality, and sexual orientation should all be addressed during the decision-making process. IMPLICATIONS: Provider communication and preparation for realistic surgical outcomes can be improved to assist WCBA throughout the decision-making process and enhance psychosexual functioning.

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.

Exploring Latino Perspectives in Childhood Fever: Beliefs, Practices, and Needs.

INTRODUCTION: Latino parents have significant knowledge gaps and misconceptions about fever. In this study, we explored Latino beliefs and practices around fever and its impact on their care decisions. METHODS: A qualitative-focused ethnography was conducted with 21 Latino parents. Semi-structured interviews were completed, and inductive thematic analysis was used to identify themes and subthemes. RESULTS: Three major themes emerged: (a) the meaning of fever; (b) seeking guidance; and (c) navigating fever. Subthemes included: a sign of folk illness, a sign of infection, trust in health care providers, watchful waiting, and barriers and needs. DISCUSSION: Latino parents have significant knowledge gaps about the role of fever in illness. They engage multiple systems of care but rarely share their fears with health care providers. Culturally-sensitive interventions incorporating traditional and biomedical approaches are needed. Findings can help inform future interventions targeting knowledge gaps in this population.

A Person-Centered Approach Understanding Stroke Survivor and Family Caregiver Emotional Health.

ABSTRACT: BACKGROUND: The purpose of this study was to incorporate a person-centered approach to understand the emotional health needs and perspectives of stroke survivors (SSs) and their caregivers. METHODS: In collaboration with 4 SSs and caregivers as research partners, quantitative data were collected to assess poststroke emotional health needs, and qualitative data were collected to gain insight into SS and caregiver emotional health perspectives after stroke. RESULTS: Forty surveys (n = 26 SSs, n = 14 caregivers) were collected. The predominate emotional health needs were frustration (65%), anxiety (54%), and stress (50%) for SSs and stress (71%), worry (57%), and frustration (57%) for caregivers. Two group interviews (n = 7 SSs, n = 3 caregivers) were completed. Four emerging themes were identified: receiving support from those in similar situations, poststroke emotional responses, situations experienced in healthcare settings, and a hypervigilance for sudden and unexpected events. CONCLUSION: Emotional healthcare services for SSs and their caregivers may consider providing reoccurring mental health education and multifaceted treatment approaches, including provision of peer support, and addressing the unique emotional stressors SSs and caregivers may be experiencing. The small sample size precludes generalizing the results into the broader stroke population. However, by leveraging the lived experience of SSs and their caregivers, the results may help find ways to support SSs' and caregivers' emotional health.

Activism among exceptional patients with cancer.

BACKGROUND: The "exceptional patients" with cancer are survivors who had advanced cancer considered incurable by medical report and who subsequently became disease-free or experienced unexplained survival time given the nature of their disease or treatment. This experience is a puzzling phenomenon that has not been formally investigated in a cancer population. The purpose of this study was to understand exceptional patients' accounts of their experience. MATERIALS AND METHODS: This study used a narrative approach with a cross-case thematic analysis. Recruitment took place at health care centers in the USA and Israel. Oncologists in both centers were asked to identify patients who had an exceptional disease course. Patients were then contacted and interviewed; an audio recording was made of each narrative account and then transcribed. Interviews and thematic analyses were conducted independently at each site. These thematic findings from each site were discussed with both research teams and a common underlying theme was identified, which is the focus of this report. RESULTS: Twenty-six participants were interviewed: 14 from the USA and 12 from Israel. All the participants have had advanced disease with a range of diagnoses that included breast, colorectal, pancreatic, ovarian cancer, glioblastoma multiforme, and others. The main recurrent theme from both the US and Israeli sites was personal activism. This was manifested in taking charge and getting involved in the process of diagnosis and treatment, as well as becoming more altruistic in their relationships with others. In many cases, this was reflected in a change in a philosophy about life. CONCLUSIONS: In this study, we found that activism was a major theme that was independently observed in both Israel and the U.S.A. This has implications for health care providers to facilitate patient engagement in the care and treatment of their disease. Further research on this phenomenon is needed.

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.

Implementing an inpatient integrative medicine consult service for children with pain: A qualitative analysis.

OBJECTIVES: Complementary and integrative medicine (CIM) therapies show clinical benefits with minimal side effects, yet challenges to effective integration in hospital settings remain. The current study aimed to better understand the process of integration of CIM therapies at a large urban pediatric hospital from the perspectives of providers, parents, and administrators. DESIGN: The study employed an applied medical ethnography. SETTING: The ethnography was conducted before, during, and after an Integrative Medicine Pain Consult Service (IM Pilot) was implemented at a large urban pediatric hospital during the spring of 2017. MAIN OUTCOME MEASURES: Fieldwork interviews, participant observations, and document review captured aspects of the integration of CIM over a 6-month study period. Ethnographic analysis included thematic content analysis. Participants included providers (n = 10), administrators (n = 5), and parents of patients (n = 11). RESULTS: Emergent themes from analysis of the interviews and field notes were organized according to the socio-ecological model. Themes included facilitating factors for CIM pain management at the intrapersonal and community levels (Alignment with Parental Perceptions of Child Needs and Provider Desire to Offer Care, Alignment of CIM with Spiritual Beliefs and Community Norms) and barriers at the interpersonal, organizational, and political levels (Inter-professional Challenges, Lack of Logistics in Place for Referrals and Triaging Patients with Pain, Lack of Remuneration/Insurance Reimbursement for Care). CONCLUSIONS: To address barriers, future efforts to implement integrative pain management programs in pediatric hospital settings may consider testing implementation strategies, including engaging program champions and family advocates, providing education on CIM professions and therapies to hospital staff, and billing for provider time rather than individual CIM therapies.

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.

Negotiating living with an arteriovenous fistula for hemodialysis.

The purpose of this study was to examine how clients with end stage renal disease on hemodialysis negotiate living with an arteriovenous fistula. A fistula is the preferred access for hemodialysis, and clients must continually monitor and protect their fistula. In this qualitative, ethnographic study, data were collected during fieldwork and semistructured interviews. Constructivism and a cultural negotiation model provided frameworks for the study. Fourteen clients were interviewed; interviews lasted 1.5 to 4 hours. Results revealed new insights into informants'perspectives and experiences with a vascular access. The overarching theme was vulnerability, and underlying themes were body awareness, dependency, mistrust, and stigma. The response to vulnerability was to be continually vigilant and assertive to protect the holistic self Stigma of the vascular access was an important issue for informants and evoked the greatest emotional responses.

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.

The Good, the Bad, and Recovery: Adolescents Describe the Advantages and Disadvantages of Alternative Peer Groups.

In 2017, approximately 1.5 million American adolescents had a substance use disorder (SUD). Adolescents with SUD risk hindering their neurological development, which can result in problems with memory and self-regulation, and in turn disrupt their education, relationships, and life opportunities. Treating adolescents with SUD is challenging. Thus, effective models that help adolescents engage in long-term recovery are needed. The Alternative Peer Group (APG) is an adolescent recovery support model that incorporates pro-recovery peers and sober social activities into standard continuing care practices. In this qualitative study thematic content analysis methods were used to explore transcripts from in-depth interviews with adolescent APG participants collected in a prior study. The aim of this secondary analysis was to get a clear understanding of adolescents' perceptions of the advantages and disadvantages of APGs for supporting SUD recovery. Findings suggest that pro-recovery peer and adult role models, structured activities and a positive social climate that promotes fun, a sense of belonging, and accountability are continuing care elements that are likely to help adolescents resolve their ambivalence about SUD recovery and increase their motivation to engage in the hard work of recovery. These findings can inform the design of effective recovery support model services that promote long-term recovery for adolescents with SUD.