Home enteral nutrition: Use of photo‐elicitation to capturepatient and caregiver experiences

Background Despite the importance of home enteral nutrition (HEN), there is a lack of understanding within the medical and general community of how HEN impacts the lives of patients and caregivers. Using a theoretical orientation that attends to the materiality of both everyday and medical objects, we explored patients' and family caregivers' everyday experiences of administering feeds during HEN.This project received an internal funding from the Care Experience Program within Mayo Clinic's Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

Challenging HIV-related stigma and discrimination: the role of the family life educator

Master of ScienceDepartment of Family Studies and Human ServicesKaren S. Myers-BowmanToday the HIV/AIDS epidemic is one of the many crises families may face. Many people have died of the disease while others are still living with it. At the end of 2003, an estimated 1,039,000 to 1,185,000 persons in the United States were living with HIV/AIDS, with 24-27% undiagnosed and unaware of their HIV infection. The Centers for Disease Control (CDC) estimates that approximately 40,000 persons become infected with HIV each year (CDC, 2007). Stigmatization and discrimination related to HIV/AIDS is one of the many challenges that individuals and families affected by the disease face. They are unable to get employment, are denied health care, cannot access services in their communities and sometimes lose respect and power as a result of stigma. Stigma and discrimination also have been recognized as one of the main obstacles to HIV/AIDS, testing, prevention and treatment and yet little has been done to combat it. Stigma and discrimination is not only experienced by people living with HIV/AIDS but their family members, close friends, service providers and people that work with them also are stigmatized by association. This report highlights the need for family life educators to expand HIV educational programs to include issues on stigmatization and discrimination. It identifies some of the reasons why people stigmatize, the ways which stigma and discrimination are expressed and the impacts it has on individuals and their family members. Using Bronfenbrenner’s ecological model of human development, this report identifies the need to look at HIV-related stigma and discrimination as a societal problem rather than individual problem, and presents implications for education programs for the general public

Coping With Colorectal Cancer: A Qualitative Exploration With Patients and Their Family Members

Background. Extensive family coping research has been conducted among breast cancer, prostate cancer and melanoma with lesser emphasis on the coping experiences of colorectal cancer (CRC) patients and their family members. Objective. To examine ways in which patients and their family members cope with the diagnosis of CRC. Methods. A total of 73 participants (21 patients, 52 family members) from 23 families described their experiences during and after a CRC diagnosis, including their coping experiences with the diagnosis. Data from semi-structured interviews were audio recorded and transcribed. The data were analyzed utilizing content analysis with inductive coding methods. Results. Eight major themes were identified: positive reframing, holding on to a sense of normalcy, religion and spirituality, joining a group, creating awareness of CRC, lifestyle change, seeking information and alternative treatments. Maintaining an emotional sense of normalcy through positive thinking, engaging in activities to take one’s mind off the diagnosis and believing that there is a higher authority which has control over the diagnosis and life were vital for the patients and their family members. Patients and family members used similar coping strategies. Conclusion. Findings from this study have implications for understanding how families blend emotion-based and problem-focused coping strategies in the face of a CRC diagnosis. Further developing evidence-based interventions that target coping and well-being in cancer patients and extending them to family members is necessary and holds great promise for providers who care for patients with familial cancers

Coping With Colorectal Cancer: A Qualitative Exploration With Patients and Their Family Members

Background. Extensive family coping research has been conducted among breast cancer, prostate cancer and melanoma with lesser emphasis on the coping experiences of colorectal cancer (CRC) patients and their family members. Objective. To examine ways in which patients and their family members cope with the diagnosis of CRC. Methods. A total of 73 participants (21 patients, 52 family members) from 23 families described their experiences during and after a CRC diagnosis, including their coping experiences with the diagnosis. Data from semi-structured interviews were audio recorded and transcribed. The data were analyzed utilizing content analysis with inductive coding methods. Results. Eight major themes were identified: positive reframing, holding on to a sense of normalcy, religion and spirituality, joining a group, creating awareness of CRC, lifestyle change, seeking information and alternative treatments. Maintaining an emotional sense of normalcy through positive thinking, engaging in activities to take one’s mind off the diagnosis and believing that there is a higher authority which has control over the diagnosis and life were vital for the patients and their family members. Patients and family members used similar coping strategies. Conclusion. Findings from this study have implications for understanding how families blend emotion-based and problem-focused coping strategies in the face of a CRC diagnosis. Further developing evidence-based interventions that target coping and well-being in cancer patients and extending them to family members is necessary and holds great promise for providers who care for patients with familial cancers

Health Care Professionals' Perspectives on Teleneonatology Through the Lens of Normalization Process Theory

Background and aims Little research has been done on tele‐intensive care unit (ICU) implementation across different types of ICUs, and there exist few studies that have used qualitative research methods to analyze the human and organizational factors influencing optimization of telemedicine for newborn resuscitation. The objective of this study was to understand health care professionals' acceptance, utilization, and integration of video telemedicine for newborn resuscitation (termed teleneonatology) in community hospital settings. Methods Focus group and individual interviews were conducted with 49 health care professionals at six affiliated health system hospitals. Data were gathered from physicians (n = 18), nurses (n = 30), and a nurse practitioner. Data were inductively analyzed using a thematic approach, and then constructs from normalization process theory (NPT) were deductively applied. NPT rendered a general framework to describe and assess how care teams perceive the implementation of teleneonatology and how they interact with this telemedicine service in their local setting. Results Local health care professionals accepted teleneonatology as an important, helpful service, yet its implementation was perceived as both valuable and a threat to professional traditions. Utilization may depend on perceived benefit, mutual understanding of the guidelines, and expectations of use, and other relational, human, contextual, and system factors. Participants in this study agreed on the need for collective work to successfully integrate teleneonatology into the local practice. Discussions NPT uncovered that successful implementation of a teleneonatology program may be facilitated by strong interpersonal relationships among care teams, continuous programmatic training and education, and communicating the clinical value of teleneonatology, including its opportunities and benefits.The data reported were collected as part of a larger study that was funded through an internal grant from the Mayo Clinic Department of Pediatric and Adolescent Medicine

A Mixed-Methods Study on the Barriers and Facilitators of Telemedicine for Newborn Resusciation

Background: Teleneonatology may improve the quality of high-risk newborn resuscitations performed by general providers in community settings. Variables that affect teleneonatology utilization have not been identified. Introduction:The objective of our mixed-methods study was to understand the barriers and facilitators experienced by local care providers who receive teleneonatology services. Materials and Methods: In October 2015, an electronic survey was sent to 349 teleneonatology participants at 6 community hospitals to assess user satisfaction, technology usability and acceptability, and impact on patient care. From December 2015 to June 2016, 49 participants were involved in focus groups and individual interviews to better understand barriers and facilitators of teleneonatology implementation. Qualitative data were analyzed using a thematic approach.Results:Survey response rate was 31.8% (N = 111). Of 93 survey respondents, 88 (94.6%) agreed that teleneonatology was needed at their hospitals, and of 52 participants, 50 (96.2%) believed that teleneonatology consults were helpful. We identified multiple facilitators and barriers to program implementation in education and training, process and work flow, communication, and technology.Discussion:Local care teams believed that teleneonatology was valuable for connection to a remote neonatologist. Successful program implementation may be facilitated by communicating the value of teleneonatology, engaging local stakeholders in program training and education, maintaining supportive professional relationships, and designing simple, highly reliable clinical work flows. Conclusions: Teleneonatology is viewed as an innovative, valuable service by local care teams. The identified barriers and facilitators to program use should be considered when implementing a teleneonatology program.This project was funded through an internal grant from the Mayo Clinic Department of Pediatric and Adolescent Medicine

"Ultimately, mom has the call": Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy

This study employs the concept of relational autonomy to understand how relational encounters with family members (FMs) and care providers may shape decisions around ovarian cancer patients’ clinical trial (CT) participation. The study also offers unique insights into how FMs view patients’ decision making.This work was supported by the grants from the National Institutes of Health (P50 CA136393 and RO3 CA175462)

Patient and family member perspectives on searching for cancer clinical trials: A qualitative interview study

Objective: Clinical trials are vital in the context of ovarian cancer and may offer further treatment options during disease recurrence, yet enrollment remains low. Understanding patient and family member experiences with identifying trials can inform engagement and education efforts. Methods: Interviews were conducted with 33 patients who had experience with clinical trial conversations and 39 nominated family members. Thematic analysis examined experiences and generated findings for clinical practice. Results: Trial conversations with providers at diagnosis were uncommon and often overwhelming. Most participants delayed engagement until later in the disease course. With hindsight, though, some wished they considered trials earlier. Difficulty identifying appropriate trials led some to defer searching to providers, but then they worried about missed opportunities. Most family members felt unqualified to search. Conclusion: Trial conversations during clinical encounters should start early and include specifying search responsibilities of providers, patients, and family. Patients and family members can be engaged in searches but need guidance. Practice implications: Trials should be discussed throughout the disease course, even if patients are not ready to participate or are not making a treatment decision. Education should focus on identifying trials that meet search criteria. Transparency regarding each individual’s role in identifying trials is critica

Community Stakeholders\u27 Perceptions of the Role of Family in HIV Prevention in Iringa, Tanzania

Although HIV is identified as a family disease, the overall response to the global HIV epidemic continues to predominantly focus on individuals. The aim of this qualitative study was to explore how the role of the family in HIV prevention is perceived by community-based stakeholders. Understanding the role of the family within the context of the HIV/AIDS is essential for community/public health nurses. In total, 34 stakeholders participated in the study. Three major categories were identified namely: fostering positive intra-familial relations, utilizing external resources, and barriers to family roles. The study findings have implications for community-based HIV family interventions

Community Stakeholders\u27 Perceptions of the Role of Family in HIV Prevention in Iringa, Tanzania

Although HIV is identified as a family disease, the overall response to the global HIV epidemic continues to predominantly focus on individuals. The aim of this qualitative study was to explore how the role of the family in HIV prevention is perceived by community-based stakeholders. Understanding the role of the family within the context of the HIV/AIDS is essential for community/public health nurses. In total, 34 stakeholders participated in the study. Three major categories were identified namely: fostering positive intra-familial relations, utilizing external resources, and barriers to family roles. The study findings have implications for community-based HIV family interventions