Making Meaning Matter: an Editor's Perspective on Publishing Qualitative Research.

The term qualitative research refers to a family of primarily non-numeric methods for describing, analyzing, and interpreting the lived experiences of people in their day to day lives. Originally developed to study social problems such as poverty, juvenile delinquency, and race relations, qualitative research methods have been used in the health sciences since the 1960s to better understand the socialization of medical professionals and the culture of medical education and practice. More recently, qualitative research has been employed in health services research to address and improve the quality and safety of care. While quantitative researchers generally ask "what" or "how many" questions, qualitative researchers generally ask, "why" or "how"? Publishing qualitative research comes with a number of challenges, among them, manuscript length, unfamiliarity of reviewers with qualitative traditions, and sample sizes that, by design, are difficult to generalize from. In addition, while there is general agreement about the quality of evidence and types of research designs used in quantitative studies, the same is not yet the case for qualitative and mixed methods research although a variety of useful guidelines have recently appeared. From the perspective of journal editors, we raise and offer guidance on three important questions: (1) Is the study under review suitable for this journal? (2) What is the rationale for using qualitative methods to carry out the research? (3) What are editors/reviewers looking for in a qualitative submission? In unpacking the third question, we describe common strategies editors use and challenges that we have encountered in the abstract, background, methods, results, discussion, and conclusions sections of qualitative submissions we and our colleagues have reviewed.

A descriptive study of the multidisciplinary healthcare experiences of inpatient resuscitation events.

Background: In-hospital resuscitation events have complex and enduring effects on clinicians, with implications for job satisfaction, performance, and burnout. Ethically ambiguous cases are associated with increased moral distress. We aim to quantitatively describe the multidisciplinary resuscitation experience. Methods: Multidisciplinary in-hospital healthcare professionals at an adult academic health center in the Midwestern United States completed surveys one and six weeks after a resuscitation event. Surveys included demographic data, task load (NASA-TLX), overall and moral distress, anxiety, depression, and spiritual peace. Spearman's rank correlation was computed to assess task load and distress. Results: During the 5-month study period, the study included 12 resuscitation events across six inpatient units. Of 82 in-hospital healthcare professionals eligible for recruitment, 44 (53.7%) completed the one-week post-resuscitation event survey. Of those, 37 (84.1%) completed the six-week survey. Highest median task load burden at one week was seen for temporal demand, effort, and mental demand. Median moral distress scores were low, while "at peace" median scores tended to be high. There were no significant non-zero changes in task load or distress scores from weeks 1-6. Mental demand (r = 0.545, p < 0.001), physical demand (r = 0.464, p = 0.005), performance (r = -0.539, p < 0.001), and frustration (r = 0.545, p < 0.001) significantly correlated with overall distress. Performance (r = -0.371, p = 0.028) and frustration (r = 0.480, p = 0.004) also significantly correlated with moral distress. Conclusions: In-hospital healthcare professionals' experiences of resuscitation events are varied and complex. Aspects of task load burden including mental and physical demand, performance, and frustration contribute to overall and moral distress, deserving greater attention in clinical contexts.

We were in the fight together: The expectations of bereaved caregivers of patients with acute myeloid leukemia from diagnosis to death.

PURPOSE: Patients with hematologic malignancies are more optimistic than their oncologists and their expectations may be a barrier to timely hospice care. Patient expectations toward the end of life (EOL), however, have not been characterized. In this study, we analyzed interviews of bereaved caregivers to understand the expectations of patients diagnosed with acute myeloid leukemia and the factors that influenced those expectations, from diagnosis until death. METHODS: Bereaved caregivers (n = 19) participated in an in-depth interview that included open-ended and semi-structured prompts, within 18 months following patient death. Interviews were analyzed using a modified grounded theory qualitative approach and constant comparative methods. RESULTS: We identified three themes relevant to expectations: Taking Stock, Being Stuck, and Disruption. Caregivers described clear and optimistic early expectations that AML is treatable. It was understood that treatment was required to survive. Later, when treatment options were limited, patients and caregivers became stuck in a belief that the patient could continue to live indefinitely on supportive care or at least until new more effective treatments were available. Caregivers often realized that the patient was at the end of life only when faced with a disruption, an event or conversation that changed their expectations for indefinite patient survival. CONCLUSIONS: Caregivers described continued expectations for patient survival until presented with irrefutable evidence to the contrary. The study suggests patients and caregivers may make better EOL care decisions if their early optimism is deliberately moderated by ongoing conversations with clinicians that highlight the sentinel events that signal treatment failure and explain how expectations and goals are changing from living a longer life to dying a more comfortable death.

ASPIRE: A Program for Developing Clinician Educators' Scholarship, Advancement, and Sense of Community.

INTRODUCTION: Faculty development programs encouraging clinician educators' scholarship have been established at many medical schools. The same is true for programs that address the isolation and loneliness many faculty members feel in their day-to-day clinical work and administration. Few programs have explicitly combined development of scholarship and sense of community. AIM: The goals of the Advanced Scholars Program for Internists in Research and Education (ASPIRE) are as follows: (1) provide training in scholarship development including research methods, implementation, and dissemination; (2) provide expert mentoring and support for professional development; and (3) create a greater sense of campus community. SETTING: ASPIRE scholars are clinician educators in the Department of Medicine at Indiana University School of Medicine. PROGRAM DESCRIPTION: The program runs 18 months, includes intensive mentoring, covered time for scholars and mentors, resources, and two half-day educational sessions per month focused on scholarship and community development. PROGRAM EVALUATION: Institutional leaders' public statements and actions regarding ASPIRE were documented by program leadership. Data collected from ASPIRE mentors and scholars through interviews and free text survey responses were analyzed using an immersion/crystallization approach. Two central themes were identified for both scholars and mentors: benefits and challenges of the program. Benefits included mentors, program design, community development, increased confidence, skills development, improved patient care, and institutional impact. Challenges included time to accomplish the program, balance of community-building and skills development, and lack of a clear path post-ASPIRE. DISCUSSION: Combining skills-based learning with safe psychological space were judged important elements of success for the ASPIRE program. Conversations are ongoing to identify opportunities for scholars who have completed the program to continue to pursue scholarship, expand their skills, and build community. We conclude that the program both is feasible and was well-received. Sustainability and generalizability are important next steps in ensuring the viability of the program.

Bereaved Informal Caregivers Rarely Recall a Relationship Between Transfusions and Hospice in Acute Myeloid Leukemia.

AIMS: The inability to prescribe blood transfusions is a potential barrier to timely hospice enrollment for patients with blood cancers. The benefits and harms of transfusions near the end of life (EOL), however, are poorly characterized and patients' preferences are unknown. We sought to characterize the recollections of bereaved caregivers about the relationships between transfusions and hospice enrollment decisions. METHODS: We recruited 18 bereaved caregivers of 15 decedents who died within 6-18 months of the interview. Interviews focused on caregivers' recollections of transfusion and hospice enrollment decisions. Transcripts were analyzed for themes. RESULTS: We identified 2 themes. First, caregivers described that transfusions were necessary and the decisions to receive transfusions or not were deferred to the clinicians. Second, only 1 caregiver recalled transfusions as relevant to hospice decisions. In that instance there was a delay. Caregivers identified difficulties recognizing death was imminent, hope for miracles, and the necessity of accepting life was ending as more relevant barriers. CONCLUSIONS: The results indicate clinicians' beliefs in transfusion at EOL may be a more relevant barrier to hospice enrollment than patients' preferences. Strategies to evaluate accurately and discuss the actual benefits and harms of transfusions at the EOL are necessary to advise patients and integrate their preferences into decisions.

Correction: [On Becoming a Global Citizen: Transformative Learning Through Global Health Experiences].

[This corrects the article DOI: 10.1016/j.aogh.2017.07.005.].

Understanding social workers' hidden roles in medication safety for older adults: A qualitative study.

Older adults are vulnerable to risks associated with medications. This study explores the roles of Social Workers in facilitating medication safety for older adults. Eight social workers from federally qualified health centers participated in a case-based and interactive medication safety curriculum. They participated in an in-depth, semi-structured interview to explore their roles and strategies in assisting older adults and caregivers with medication management. Findings were transcribed and analyzed. Six themes characterizing social workers' roles in medication management were identified: a) Referral: matching patients and medication-related resources within the health-care system and community; b) Communication: connecting providers, patients, caregivers, and support system; c) Access to medicine: addressing unique needs of each patient to foster their ability to obtain their medicines; d) Social Determinants of Health: investigating the social challenges of each patient and facilitating specific medication management approaches to meet identified needs; e) Engagement: engaging patients in co-developing a treatment plan; f) Caregiver Support: preparing caregivers to assist in medication management. Social workers are trained and well positioned to provide a multi-faceted approach to improve medication management for older adults. Their unique perspectives and skills are important in addressing the complex challenges of medication management.

Mindfulness Training Supports Quality of Life and Advance Care Planning in Adults With Metastatic Cancer and Their Caregivers: Results of a Pilot Study.

BACKGROUND: Emotional distress often causes patients with cancer and their family caregivers (FCGs) to avoid end-of-life discussions and advance care planning (ACP), which may undermine quality of life (QoL). Most ACP interventions fail to address emotional barriers that impede timely ACP. AIM: We assessed feasibility, acceptability, and preliminary effects of a mindfulness-based intervention to facilitate ACP for adults with advanced-stage cancer and their FCGs. DESIGN: A single-arm pilot was conducted to assess the impact of a 6-week group mindfulness intervention on ACP behaviors (patients only), QoL, family communication, avoidant coping, distress, and other outcomes from baseline (T1) to post-intervention (T2) and 1 month later (T3). PARTICIPANTS: Eligible patients had advanced-stage solid malignancies, limited ACP engagement, and an FCG willing to participate. Thirteen dyads (N = 26 participants) enrolled at an academic cancer center in the United States. RESULTS: Of eligible patients, 59.1% enrolled. Attendance (70.8% across 6 sessions) and retention (84.6% for patients; 92.3% for FCGs) through T3 were acceptable. Over 90% of completers reported high intervention satisfaction. From T1 to T3, patient engagement more than doubled in each of 3 ACP behaviors assessed. Patients reported large significant decreases in distress at T2 and T3. Family caregivers reported large significant improvements in QoL and family communication at T2 and T3. Both patients and FCGs reported notable reductions in sleep disturbance and avoidant coping at T3. CONCLUSIONS: The mindfulness intervention was feasible and acceptable and supported improvements in ACP and associated outcomes for patients and FCGs. A randomized trial of mindfulness training for ACP is warranted. The study is registered at ClinicalTrials.gov with identifier NCT02367508 ( https://clinicaltrials.gov/ct2/show/NCT02367508 ).

Abbreviated dignity therapy for adults with advanced-stage cancer and their family caregivers: Qualitative analysis of a pilot study.

OBJECTIVE: Dignity therapy (DT) is designed to address psychological and existential challenges that terminally ill individuals face. DT guides patients in developing a written legacy project in which they record and share important memories and messages with those they will leave behind. DT has been demonstrated to ease existential concerns for adults with advanced-stage cancer; however, lack of institutional resources limits wide implementation of DT in clinical practice. This study explores qualitative outcomes of an abbreviated, less resource-intensive version of DT among participants with advanced-stage cancer and their legacy project recipients. METHOD: Qualitative methods were used to analyze postintervention interviews with 11 participants and their legacy recipients as well as the created legacy projects. Direct content analysis was used to assess feedback from the interviews about benefits, barriers, and recommendations regarding abbreviated DT. The legacy projects were coded for expression of core values.ResultFindings suggest that abbreviated DT effectively promotes (1) self-expression, (2) connection with loved ones, (3) sense of purpose, and (4) continuity of self. Participants observed that leading the development of their legacy projects promoted independent reflection, autonomy, and opportunities for family interaction when reviewing and discussing the projects. Consistent with traditional DT, participants expressed "family" as the most common core value in their legacy projects. Expression of "autonomy" was also a notable finding.Significance of resultsAbbreviated DT reduces resource barriers to conducting traditional DT while promoting similar benefits for participants and recipients, making it a promising adaptation warranting further research. The importance that patients place on family and autonomy should be honored as much as possible by those caring for adults with advanced-stage cancer.

Addressing personal barriers to advance care planning: Qualitative investigation of a mindfulness-based intervention for adults with cancer and their family caregivers.

OBJECTIVE: Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients' and families' emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement. METHOD: The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.ResultFour salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease.Significance of resultsThe MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.

Spiritual Experiences of Adults With Advanced Cancer in Outpatient Clinical Settings.

CONTEXT: Adults who have advanced cancer experience distress, and many use religion and spirituality to cope. Research on the spiritual experiences of patients with advanced cancer will help guide the provision of high-quality spiritual care. OBJECTIVES: To qualitatively describe advanced cancer patients' spiritual experiences of illness. METHODS: We conducted semistructured qualitative interviews at a single cancer center with 21 patients with stage IV solid malignancies who had a prognosis of less than 12 months, as estimated by each patient's medical oncologist. Five investigators conducted a thematic analysis of the transcribed interviews. RESULTS: We found 31 patients who were eligible for enrollment, and 21 (67.7%) participated in interviews to thematic saturation. Using a thematic-analysis approach, five major themes emerged. Relationships with family and friends was the most important theme among all 21 patients irrespective of their religious or spiritual identity. Relationship with God and faith community was frequently identified by those who considered themselves spiritually religious. Cancer often led to reflection about the meaning of life and the nature of existential suffering. Patients addressed the extent to which identity was changed or maintained through the cancer experience, and some expressed acceptance as a way of coping with illness. CONCLUSIONS: Spiritual care for dying cancer patients should always include the exploration of relationships with family and friends, as well as God and faith community for some patients. Relationships with family, friends, and God can be a source of strength for many. Making meaning, addressing identity concerns, supporting acceptance as a resource for coping with illness, and acknowledging existential suffering will often arise for these patients.

"My Future is Now": A Qualitative Study of Persons Living With Advanced Cancer.

OBJECTIVES: Advance care planning (ACP) enables individuals to deliberate about future preferences for care based upon their values and beliefs about what is important in life. For many patients with advanced cancer, however, these critical conversations do not occur. A growing body of literature has examined the end-of-life wishes of seriously ill patients. Few studies have explored what is important to persons as they live with advanced cancer. The aim of the current study was to address this gap and to understand how clinicians can support patients' efforts to live in the present and plan for the future. METHODS: Transcriptions of interviews conducted with 36 patients diagnosed with advanced cancer were analyzed using immersion-crystallization, a qualitative research technique. RESULTS: Four overarching themes were identified: (I) living in the face of death, (II) who I am, (III) my experience of cancer, and (IV) impact of my illness on others. Twelve subthemes are also reported. SIGNIFICANCE OF RESULTS: These findings have significant implications for clinicians as they partner with patients to plan for the future. Our data suggest that clinicians consider the following 4 prompts: (1) "What is important to you now, knowing that you will die sooner than you want or expected?" (2) "Tell me about yourself." (3) "Tell me in your own words about your experience with cancer care and treatment." (4) "What impact has your illness had on others?" In honoring patients' lived experiences, we may establish the mutual understanding necessary to providing high-quality care that supports patients' priorities for life.

Clarifying Values and Preferences for Care Near the End of Life: The Role of a New Lay Workforce.

Community health workers (CHWs) can engage elderly persons in advance care planning (ACP) conversations. We report how trained CHWs used Go Wish cards (GW R cards) to identify patients' highest priority preferences and evaluated whether engaging in ACP conversations was associated with subsequent health care utilization. A one-year long, pre-post longitudinal design was used to evaluate our educational intervention using mixed-methods. 392 patients (mean of 73.3 years, 82% women, 48% African American, 43% Caucasian) enrolled in the Aging Brain Care (ABC) program and participated in ACP discussions with CHWs. We expanded the role of the ABC's CHW, who work directly with individuals and caregivers during home visits to monitor bio-psycho-social needs, to include ACP conversations. The CHWs received ACP training, practice with tools such as GW R cards, and support from an electronic health record (EHR) clinical decision support tool. Quantitative measures of patients' ACP preferences and health care utilization were abstracted from the EHR. Qualitative data about patients' perceptions of CHWs in facilitating ACP discussions was obtained through semi-structured interviews. Eighty-six patients' data indicated that they had engaged in a preferences-for-care process using GW R cards. The top-three card choices by patients was attending to spirituality and religious concerns, preparing for end of life, and maintaining personal wholeness. CHWs were able to effectively engage in ACP conversations with patients and GW R cards were a positive way to stimulate discussion of issues previously undiscussed.

Impact of Community Health Workers on Elderly Patients' Advance Care Planning and Health Care Utilization: Moving the Dial.

BACKGROUND: Advance care planning (ACP) is recommended for all persons to ensure that the care they receive aligns with their values and preferences. OBJECTIVE: To evaluate an ACP intervention developed to better meet the needs and priorities of persons with chronic diseases, including mild cognitive impairment. RESEARCH DESIGN: A year-long, pre-post intervention using lay community health workers [care coordinator assistants (CCAs)] trained to conduct and document ACP conversations with patients during home health visits with pre-post evaluation. SUBJECTS: The 818 patients were 74.2 years old (mean); 78% women; 51% African American; 43% white. MEASURES: Documentation of ACP conversation in electronic health record fields and health care utilization outcomes. RESULTS: In this target population ACP documentation rose from 3.4% (pre-CCA training) to 47.9% (post) of patients who had at least 1 discussion about ACP in the electronic health record. In the 1-year preintervention period, there were no differences in admissions, emergency department (ED) visits, and outpatient visits between patients who did and did not have ACP discussion. After adjusting for prior hospitalization and ED use histories, ACP discussions were associated with a 34% less probability of hospitalization (hazard ratios, 0.66; 95% confidence interval, 0.45-0.97), and similar effects are apparent on ED use independent of age and prior ED use effects. CONCLUSIONS: Patients with chronic diseases including mild cognitive impairment can engage in ACP conversations with trusted home health care providers. Having ACP conversation is associated with significant reduction in seeking urgent health care and in hospitalizations.

Evaluation of interprofessional relational coordination and patients' perception of care in outpatient oncology teams.

This pilot study was designed to measure teamwork and the relationship of teamwork to patient perceptions of care among 63 members of 12 oncology teams at a Cancer Centre in the Midwest. Lack of teamwork in cancer care can result in serious clinical errors, fragmentation of care, and poor quality of care. Many oncology team members, highly skilled in clinical care, are not trained to work effectively as members of a care team. The research team administered the Relational Coordination survey to core oncology team members-medical oncologists, nurse coordinators, and clinical secretaries-to measure seven dimensions of team skills (four relating to communication [frequency, timeliness, accuracy, and problem solving] and three relating to relationship [shared goals, shared knowledge, and mutual respect]) averaged to create a Relational Coordination Index. The results indicated that among the team member roles, nurse coordinator relational coordination indices were the strongest and most positively correlated with patient perception of care. Statistically significant correlations were intra-nurse coordinator relational coordination indices and two patient perception of care factors (information and education and patient's preferences). All other nurse coordinator intra-role as well as inter-role correlations were also positively correlated, although not statistically significant.

Response to depression treatment in the Aging Brain Care Medical Home model.

OBJECTIVE: To evaluate the effect of the Aging Brain Care (ABC) Medical Home program's depression module on patients' depression severity measurement over time. DESIGN: Retrospective chart review. SETTING: Public hospital system. PARTICIPANTS: Patients enrolled in the ABC Medical Home program between October 1, 2012 and March 31, 2014. METHODS: The response of 773 enrolled patients who had multiple patient health questionnaire-9 (PHQ-9) scores recorded in the ABC Medical Home program's depression care protocol was evaluated. Repeatedly measured PHQ-9 change scores were the dependent variables in the mixed effects models, and demographic and comorbid medical conditions were tested as potential independent variables while including random effects for time and intercept. RESULTS: Among those patients with baseline PHQ-9 scores >10, there was a significant decrease in PHQ-9 scores over time (P<0.001); however, the effect differed by gender (P=0.015). On average, women's scores (4.5 point drop at 1 month) improved faster than men's scores (1 point drop at 1 month). Moreover, both men and women had a predicted drop of 7 points (>50% decline from baseline) on the PHQ-9 at 6 months. CONCLUSION: These analyses demonstrate evidence for the sustained effectiveness of the ABC Medical Home program at inducing depression remission outcomes while employing clinical staff who required less formal training than earlier clinical trials.

Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning.

OBJECTIVE: Although patients want to participate in discussions and decisions about their end-of-life care, studies show that providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of our demonstration project was to provide education and coaching to individuals, health providers, and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care during the final stages of life. METHOD: Education and training engaged community members as well as healthcare providers to: (1) improve participant comfort and facility discussing end-of-life issues; (2) improve knowledge of healthcare choices, including palliative and hospice care; and (3) prepare all participants to explore and document personal values, life goals, and priorities as well as goals of care. RESULTS: Between January of 2013 and June of 2015, the team educated close to 5,000 participants. Participants' ratings of the quality and perceived usefulness of the educational events ranged from 4 to 5 (using a 5-point scale, with 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice. SIGNIFICANCE OF RESULTS: Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well during an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for "sustaining hope" (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who will develop trusting relationships with patients in home-based services, and fostering self-awareness and self-care among palliative care providers.

New workforce development in dementia care: screening for "caring": preliminary data.

The United States has a significant shortage of trained geriatricians and of nurses, social workers, and paraprofessionals educated to care for elderly adults. As the aging population continues to grow, providing high-quality care will require new models that better address the many needs of aging individuals and their caregivers, using cost-effective strategies. Responding to this need, the Indiana University Center for Aging Research implementation scientists developed, tested, and are now scaling up a successful collaborative care coordination model for older adults with dementia, depression, or both: the Aging Brain Care program. This model now includes a newly created frontline care provider position, the Care Coordinator Assistant. The Care Coordinator Assistant works with individuals and caregivers to monitor biopsychosocial needs and deliver evidence-based and individualized care protocols, with close supervision from the registered nurse Care Coordinator. Recognizing that current hiring practices for frontline providers were insufficient to screen for critical abilities expected in this new position, including the ability to express "caring" and empathy, a new screening process was created building on the Multiple Mini Interview (MMI) format. The Care Coordinator Assistant MMI comprised six stations, each created to simulate challenging scenarios that will be frequently encountered and to assess important candidate abilities. Overall, the six-station MMI, with two to three items per station, provided factorially valid measures and good predictive ability. The process did not appear to be overly burdensome for candidates, and interviewers noted that it was helpful in discriminating between candidates.