Nursing assistants' perceptions of their role in the resident experience.

The aim of this study was to examine nursing assistants' perspectives of their role in the nursing home resident experience. Recent efforts to improve nursing home quality are focused on providing person-centered care and improving the resident experience. However, the literature on nursing home quality lacks the perspective and experiences of nursing assistants themselves, despite their crucial role in the resident experience. Semistructured interviews were conducted with 25 nursing assistants from 17 organizations and seven states. Data were analyzed using an interpretive approach that identified relevant codes and themes. Respondents perceived that they play a pivotal role in the resident experience by providing choices, communicating important information, comforting, and living within the daily reality of cognitively impaired residents. Nursing assistants' challenges included using non-verbal communication, balancing personal care while maintaining boundaries, and dealing with a perceived lack of trust. Nursing assistants are integral to interpersonal engagement with residents and relationship-based activities, such as communication, caring, and protecting. Increased nursing assistant input into programs and policies to improve the resident experience is warranted. Quality assessment should incorporate direct input from residents and nursing assistants regarding person-centered care.

A Qualitative Approach to Understanding HIV-Related Stress in Texas(1).

Much of the southern United States is characterized by unique social, structural, and political systems that may relate to increased stress and poor health outcomes for those living with HIV. Notably, research indicates that Texas has higher survival rates for human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) than general southern trends, which might suggest that Texans living with HIV experience HIV-related stressors and coping strategies influential to health differently than those living elsewhere in the South. This study used grounded theory and semi-structured interviews to increase understanding of HIV-related stress in Texas. Participants (N=20) were 12 people living with HIV in Texas and 8 HIV-care providers in Texas. Results indicated 5 emergent stress-related themes: housing strain, substance use, limited financial abilities, relationship dynamics, and internal pressures and psychosocial resiliency. Results also highlighted some of the potentially unique ways in which this sample experienced these themes, which may relate to relatively better HIV-related outcomes in Texas. Overall, our findings deepen understanding of how people living with HIV in Texas may experience stress and inform potential approaches to HIV care elsewhere.

Attitudes toward hepatitis B virus among Vietnamese, Chinese and Korean Americans in the Houston area, Texas.

We explored attitudes about prevention, screening and treatment of hepatitis B virus (HBV) infection in Chinese, Korean and Vietnamese communities. We use qualitative methods in 12 focus groups (n = 113) of adults who self-reported their ethnicity to be Chinese, Korean, or Vietnamese. We use grounded theory (i.e., consensus-building between co-coders about recurring, emerging themes) for analysis. Diet, nutrition, fatigue and stress were misidentified as HBV causes. Improving hygiene, diet, exercise, and holistic methods were misidentified as viable HBV prevention methods. Common screening problems included not affording test and not understanding test results. Participants shared reasons for using complementary and alternative medicine--when Western medicine fails or becomes unaffordable. Participants sought information from medical providers and fellow community members, but also from the internet. Many of the attitudes and opinions that emerged may deter participation in HBV screening, prevention and treatment, insofar as community members may factor them into healthcare decision-making, choose alternative but ineffective methods of prevention and treatment, and undervalue the benefits of screening. More patient education in both traditional and new media is necessary for clarifying transmission, screening and treatment misunderstandings.

Late effects and healthcare needs of survivors of allogeneic stem cell transplantation: a qualitative study.

PURPOSE: This qualitative study of survivors of allogeneic stem cell transplantation (SCT) for haematological malignancy explored attitudes about late effects of therapy, healthcare issues and information needs. METHODS: We conducted 12 indepth cognitive interviews and three focus groups of patients who had previously had SCT and were without recurrence of their primary disease. We used grounded theory methods, where themes emerged from consensus between cocoders. Health-related quality of life was assessed with the short-form 36 (SF-36). RESULTS: The study included 22 patients (50% female; 95% white; mean age 47 years). The mean time from SCT was 5.2 years (±1.4 years). Most had low SF-36 scores. Participants discussed late effects of therapy, most commonly graft-versus-host disease, and how they impacted their quality of life. They reported frequent healthcare use and cancer screening after SCT and discussed problems affording care and interacting with insurance companies. Participants shared sources of health information (eg, preferring providers as their primary sources of information, but also learnt from websites, medical journals and peer experiences) and identified information barriers (eg, feeling 'on their own' insofar as they did not have targeted care for their needs), and expressed importance of anticipatory guidance regarding infertility. Overall, participants' personal issues and social influences impacted survivors' needs and attitudes. CONCLUSIONS: SCT survivors face continuing and lasting health effects. The factors impacting survivorship needs are complex and may be interrelated. Future research should study the affect of incorporating personal and social issues into existing clinical SCT programmes on survivors' quality of life.

Problems in transition and quality of care: perspectives of breast cancer survivors.

PURPOSE: We conducted a qualitative study to explore breast cancer survivors' perceptions and attitudes about their current healthcare utilization, screening, and information needs. METHODS: We completed eight focus groups of breast cancer survivors. We included women, adult survivors, with an initial diagnosis of breast cancer in the year 2000, treated, and without a recurrence as per medical record. To analyze transcripts, we used grounded theory methods, wherein unexpected themes and direct answers emerged from consensus between co-coders. RESULTS: Focus groups included 33 participants, the majority of whom were white (84.8%), college-educated (66.7%), and covered by private medical insurance (75.7%) or Medicare (27.3%). Participants' perceptions and attitudes about care were framed in terms of personal experiences (including facing barriers to screening, feeling in limbo in the healthcare system, having problems with communication with and between physicians, confusion about symptoms, and using self-prescribe remedies), personal attitudes (including strong opinions about what survivorship means, concerns about recurrence, and changes in self-perception and agency), and social influences (including modeling others' behaviors, changes in social life, and listening to family). CONCLUSION: Survivorship attitudes, recurrence fears, memories, and self-perceptions were influential personal factors in addition to self-efficacy. Solutions such as providing a cancer treatment summary might resolve many of the problems by consolidating and making readily available the numerous medical history and recommendations that survivors accrue over time, switching from provider to provider. Clinicians must also implement communication changes in their interactions with patients to enhance positive attitudes and behaviors, and leverage social influences.

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.

Poor reporting of search strategy and conflict of interest in over 250 narrative and systematic reviews of two biologic agents in arthritis: a systematic review.

OBJECTIVE: To evaluate the quality of reviews about etanercept (ETN) and infliximab (IFX), two biologic treatments for rheumatoid arthritis (RA). STUDY DESIGN: A comprehensive, systematic review, including searches of MEDLINE, EMBASE, and other electronic databases and hand-searches for published and unpublished literature. Two raters independently examined each article and identified systematic reviews as those including either a description of: (1) sources for identification and data retrieval; or (2) search strategy. They applied the quality of reporting of meta-analyses (QUOROM) instrument to systematic reviews. RESULTS: Of 3,620 total citations, 281 were identified as reviews. Of these, 26 (9%) qualified as systematic rather than narrative. Overall, few reviews described selection of sources, critical appraisal, or quantitative summary or synthesis. Systematic reviews most often failed to explain validity assessment. Several articles did not disclose authors' participation in industry-funded clinical trials. Most reviews published in high impact factor and rheumatology journals did not meet many quality standards. Significant associations existed between review type (narrative vs. systematic) and reported funding (P=0.05), conflicts of interest (P=0.005), and country of publication (P<0.0001). CONCLUSION: More than 90% of the published reviews were narrative and did not report methods and conflicts of interest in sufficient detail, raising concerns about selection and reporting bias.

Disease and symptom burden in systemic sclerosis: a patient perspective.

OBJECTIVE: Studies of systemic sclerosis (SSc) have enlisted measures of physical function and generic health-related quality of life in order to determine health status. However, the measurements obtained may not discriminate other essential quality of life (QOL) domains important to patients with SSc. Our study used qualitative methods to evaluate patients' assessment of disease and symptom burden in SSc. METHODS: We conducted 3 focus groups and 5 in-depth interviews of patients with SSc. Guiding questions were based on 5 themes: patient awareness, SSc-related problems, disease activity and progression, symptoms, and expectations. Thematic analysis was conducted using qualitative, grounded theory methodologies. RESULTS: Symptoms such as pain (localized or generalized), fatigue, and malaise were reported to have major influence on daily activities and QOL. Gastrointestinal symptoms were among the worst prevalent and disruptive physical problems. All participants reported significant disruptions in their social lives, a burden considered by many as the worst consequence of their disease. All expressed major effects on their overall well-being because of emotional distress, including depression, low self-esteem, concerns with physical appearance, and uncertainty about future outcomes. CONCLUSION: Patients with SSc report significant symptomatic and emotional burdens, which, in turn, affect their QOL and psychological well-being. Additional research and fuller awareness of the disease and symptom-related burdens experienced by patients with SSc may lead to additional relevant outcome measures and more effective overall treatment programs.