Supporting Primary Care Access and Use among Homeless Persons.

With the implementation of the Affordable Care Act (ACA), many homeless persons who previously lacked health insurance gained medical coverage. This paper describes the experiences of homeless persons in accessing and using primary care services, post-implementation of the ACA. Twenty-six semi-structured interviews were completed with homeless persons and primary care providers/staff. Via thematic analysis, themes were identified, categorized by: factors which influence primary care access and use patterns, and strategies to promote consistent primary care use. Maintaining insurance and leveraging systems-based strategies to support primary care access and use may address health disparities and promote health equity.

Palliative Care in Heart Transplantation.

The purpose of this article is to describe palliative care incorporation within the care of heart transplant patients. Palliative care is a holistic approach to care that includes symptom management and goal setting to improve patients' quality of life. Palliative care is designed to be used with patients who have chronic illness that impacts quality of life and should be incorporated early in the disease. All providers have a responsibility to be knowledgeable in palliative care approaches and to know when to refer a patient for specialty palliative care services. This article will describe palliative care, research study findings, and current professional guideline recommendations for patients. The article also describes challenges and barriers to the use of palliative care in heart transplant patients and strategies to address these challenges and barriers.

"Now that you've got that coverage": Promoting use of a regular source of primary care among homeless persons.

BACKGROUND: The growing number of homeless persons in the United States demonstrates greater morbidity and mortality than the population as a whole. Homeless persons are often without a regular source of primary care. Homeless persons use emergency departments and are hospitalized at higher rates than nonhomeless persons. In 2010, the enactment of the Affordable Care Act expanded access to primary care services. Nurse practitioners were at the forefront of its subsequent implementation. PURPOSE: The purpose of this qualitative study was to explore the factors that influence establishing and maintaining a regular source of primary care among homeless persons. METHODOLOGICAL ORIENTATION: In 2017, semistructured interviews were conducted in a federally qualified health center that serves predominately homeless persons. SAMPLE: A purposive convenience sample included adult health center users (N = 20). The majority of participants were insured (90%), African American (70%), and male (65%). CONCLUSIONS: Thematic analysis revealed five facilitators: sense of community, mutual patient-provider respect, financial assurance, integrated health services, and patient care teams. To establish and maintain use of a regular primary care source, homeless persons desire to experience a sense of community, feel respected by their provider/staff, and have certainty that costs will not exceed their capacity to pay. Integrated care models that leverage a multidisciplinary team approach support the use of a regular primary care source. IMPLICATIONS FOR PRACTICE: Actualizing achievable strategies that promote the consistent use of a regular primary care source can reduce use of avoidable emergency and hospital-based services, thereby improving health outcomes among homeless persons.

Pain Management in the Pediatric Palliative Care Population.

PURPOSE: The purpose of this integrative review was to identify, review, synthesize, and analyze the current literature related to pain management in the pediatric palliative care population from infancy through adolescence. METHODS: The literature was searched for the terms palliative, pediatric, and pain in PubMed, PsycINFO, Cumulative Index to Nursing and Allied HeALTH LITERATUre (CINAHL) Complete, and Google Scholar. The search was limited to papers in English that had been published from January 1, 2005, to December 31, 2016. RESULTS: These searches resulted in 918 articles, of which 29 met inclusion criteria. These 29 articles were reviewed and reported. Four broad themes emerged: patient and family experience, pain assessment, pharmacological pain management, and nonpharmaceutical interventions. CONCLUSIONS: Gaps in current research have been identified, such as investigating pediatric pain scales for the palliative care population and new complementary and alternative medical therapy and other interventions. More research is needed to bring innovative pain management interventions to the attention of pediatric caregivers. CLINICAL RELEVANCE: A better understanding of current research on pain in the pediatric palliative care population can improve patient care and lead to better research in this specialty field.

Information and support needs of young women regarding breast cancer risk and genetic testing: adapting effective interventions for a novel population.

Young women from hereditary breast and ovarian cancer (HBOC) families face a unique set of challenges in managing their HBOC risk, where obtaining essential information to inform decision making is key. Previous work suggests that this need for specific health information also comes at a time of heightened distress and greater individuation from family. In this report, we describe our adaptation of a previously-studied behavioral intervention for this population, utilizing a systematic approach outlined by the Centers for Disease Control and Prevention. First, we assessed the information needs and levels of distress in this population and correlates of this distress. These data then were used to inform the adaptation and piloting of a three-session telephone-based peer coaching intervention. One hundred young women (M age = 25 years) who were first or second degree relatives of BRCA1/2 mutation carriers participated. Sixty-three percent of the sample endorsed unmet HBOC information needs and they, on average, reported moderate levels of cancer-related distress (M = 21.9, SD = 14.6). Greater familial disruption was associated with greater cancer-related distress in multivariable models (p < .05). Ten women who participated in the survey completed the intervention pilot. They reported lower distress from pre- to post- (15.8 vs. 12.0), as well as significantly lower decisional conflict (p < .05) and greater endorsement of an array of healthy coping strategies (i.e., active coping, instrumental coping, positive reframing, planning, p's < .05). Our survey results suggest that young adult women from HBOC families have unmet cancer genetic information and support needs. Our pilot intervention was able to reduce levels of decisional conflict and promote the use of effective coping strategies. This approach needs to be further tested in a larger randomized trial.

Adolescent Perspectives Following Ostomy Surgery: A Grounded Theory Study.

PURPOSE: This purpose of this study was to provide a theoretical account of how adolescents aged 13 to 18 years process the experience of having an ostomy. DESIGN: Qualitative study using grounded theory design. SUBJECTS AND SETTING: The sample comprised of 12 English-speaking adolescents aged 13-18 years: 10 with an ostomy and 2 with medical management of their disease. METHODS: Respondents completed audio-recorded interviews that were transcribed verbatim. Data were analyzed using the constant comparative method until data saturation occurred. Dedoose, a Web-based qualitative methods management tool, was used to capture major themes arising from the data. RESULTS: Study results indicate that for adolescents between 13 and 18 years of age, processing the experience of having an ostomy includes concepts of the "physical self" and "social self" with the goal of "normalizing." Subcategories of physical self include (a) changing reality, (b) learning, and (c) adapting. Subcategories of social self include (a) reentering and (b) disclosing. CONCLUSIONS: This study sheds light on how adolescents process the experience of having an ostomy and how health care providers can assist adolescents to move through the process to get back to their desired "normal" state. Health care providers can facilitate the adolescent through the ostomy experience by being proactive in conversations not only about care issues but also about school and family concerns and spirituality. Further research is needed in understanding how parents process their adolescents' ostomy surgery experience and how spirituality assists adolescents in coping and adjustment with body-altering events.

Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support.

Young women from hereditary breast and ovarian cancer (HBOC) families face a series of medical decisions regarding their cancer risk management and integrating this information into their life planning. This presents unique medical and psychosocial challenges that exist without comprehensive intervention. To help lay the groundwork for intervention, we conducted a qualitative study among young women from HBOC families (N = 12; Mean age = 22) and cancer genetic counselors (N = 12) to explicate domains most critical to caring for this population. Women and counselors were interviewed by telephone. The predominant interview themes included preventative care planning and risk management, decision making around the pros and cons of cancer risk assessment, medical management, and psychosocial stresses experienced. Young women endorsed psychosocial stress significantly more frequently than did counselors. Both groups noted the short- and long-term decision making challenges and the support and conflict engendered among familial relationships. Our results suggest young women value the support they receive from their families and their genetic counselors, but additional, external supports are needed to facilitate adaptation to HBOC risk. In feedback interviews focused on intervention planning with a subset of these young women (N = 9), they endorsed the predominant interview themes discovered as important intervention content, a structure that would balance discussion of medical information and psychosocial skill-building that could be tailored to the young women's needs, and delivery by trained peers familiar with HBOC risk.

Living With Genetic Vulnerability: a Life Course Perspective.

This is the second article of a two part series about utilizing the life course perspective (LCP) in genetic counseling. Secondary data analysis was conducted on a grounded theory, longitudinal study which provided a wide focus on living with hereditary breast and ovarian cancer (HBOC) risk. The aim of this analysis was to explore the longitudinal data for both the temporal and social context of living with BRCA mutation genetic test results. Sixteen women from two previous studies were interviewed on multiple occasions over an 8 year time period. The LCP was used to direct a thematic analysis of the data. Families experience the consequences of knowing they carry a BRCA1 or BRCA2 gene mutation long after the initial diagnosis. These women's experiences across time reflect the concepts of the LCP and show how life is changed when families know they live with a genetic vulnerability to an adult-onset and potentially life-threatening disease. Different emphases on concepts from the LCP were evident across the different age groups. For example, the group of 40-50 year old women emphasized the concept of linked lives, those in their 30's focused on human agency and women in their 20's were more focused on timing of events. This study helps give direction to healthcare providers counseling women living with a BRCA mutation.

The Life Course Perspective: a Guide for Genetic Counselors.

This is the first article in a two part series about utilizing the life course perspective (LCP) in genetic counseling. LCP can be a useful tool for genetic counselors when counseling people with a known genetic mutation. Previous theories such as Protection Motivation Theory (PMT) and Common Sense Model of Self-Regulation (CSMSR) examine current reactions to a positive genetic test result. LCP extends beyond the current time to explore temporal and contextual elements of the experience. A review of research revealed, LCP has been used to study the perspective of caregivers of people with Alzheimer's disease, referral for a family history of breast cancer, Mexican American caregivers of older adult, social class and cancer incidence and cancer and the sense of mastery. Incorporating LCP into a study explaining the experiences of people living with a positive test result for a genetic mutation such as the BRCA mutation provides a comprehensive exploration of this experience.

Critical social theory approach to disclosure of genomic incidental findings.

Technology has expanded genomic research and the complexity of extracted gene-related information. Health-related genomic incidental findings pose new dilemmas for nurse researchers regarding the ethical application of disclosure to participants. Consequently, informed consent specific to incidental findings is recommended. Critical Social Theory is used as a guide in recognition of the changing meaning of informed consent and to serve as a framework to inform nursing of the ethical application of disclosure consent in genomic nursing research practices.

The effect of BRCA gene testing on family relationships: A thematic analysis of qualitative interviews.

Discovery of mutations in the breast and ovarian cancer susceptibility genes BRCA1 and BRCA2 can have emotional consequences for both the tested individual and his or her relatives. This secondary analysis study investigated how BRCA testing impacts family dynamics and relationships. For the original study, a grounded theory inquiry, participants were recruited from a hereditary breast/ovarian cancer syndrome support website and open-ended interviews were performed asking about individual and family experiences after BRCA testing. All 12 participants whose interviews were included in the secondary analysis had a BRCA mutation. For the secondary analysis, thematic analysis was conducted and revealed three main themes characterizing the effect of BRCA testing on family relationships: 1. That the first in the family to have testing or seek genetic counseling takes on a special family role that can be difficult for them; 2. That discussions in the family often change; and 3. That individuals may feel more or less connected to certain family members. These changes seemed to relate to family cancer history, relationships, coping strategies, communication patterns, and mutation status. Genetic counselors might find it useful to explore these issues in order to prepare clients before BRCA testing and to support them through shifts in family dynamics after disclosure of results.

The Theory of Genetic Vulnerability: a Roy model exemplar.

The purpose of this study was to explore the experience of adult genetic testing. Grounded theory was used to plan, guide, and analyze in-depth interviews with 29 participants. The theory of genetic vulnerability was developed and is composed of five concepts: (a) experiencing the family disease, (b) testing for a mutation, (c) fore-grounding inherited disease risk, (d) responding to knowledge of genetic vulnerability, and (e) altering or avoiding the family experience of inherited disease. Roy's model of adaptation is discussed as a valuable lens through which to test and adapt this theory.

Internet recruitment and e-mail interviews in qualitative studies.

In 2004, 111 million adults accessed the Internet looking for health and medical information. Qualitative researchers can apply long-standing principles of recruitment and interviewing to the Internet. The purpose of this article is to examine the theoretical and methodological aspects of Internet recruitment and e-mail interviewing. The authors address issues of appropriateness, adequacy, representativeness, sample bias, data fraud, flexibility and consistency in interviewing, timing, elimination of the need for transcription, oral versus written communication, reliability and validity, and ethical concerns. They include some practical suggestions on a research design for a qualitative study employing both Internet recruitment and e-mail interviewing.

Disclosing genetic test results to family members.

PURPOSE: To describe the experiences of disclosing genetic test results to biological family members among people tested for Huntington's disease (HD) or hereditary breast and ovarian cancer (HBOC). DESIGN: Grounded theory methodology. METHODS: Open-ended, tape-recorded interviews were conducted with 29 participants-24 who had received genetic test results and 5 who had decided not to be tested. The participants were from three countries, including 15 U.S. states. Interviews occurred from 2 months to 4 years after receiving test results. Tapes were transcribed and analyzed for conceptual categories to describe the experience of disclosing genetic test results. FINDINGS: Participants described the effects and meaning of disclosing test results to their various family members, and they selectively disclosed results to family members. The timing of disclosure was influenced by the particular disease and the person's perceived need to prepare. Disclosure of genetic test results brought the risk of HD and HBOC to the foreground, not only for the person tested but for family members as well. CONCLUSIONS: This study elucidated the perspective of the "discloser" and the consequences they anticipated and experienced.