Tamara Nix‐Parker

BACKGROUND: This study aimed to explore the decision-making experience of patients with chronic kidney disease (CKD) and their caregivers. METHODS: This was a qualitative descriptive study of the decision-making experiences of individuals with stage 3-end-stage CKD and their family caregivers. One-on-one, semistructured interviews were conducted using a guide developed and approved by a community advisory group. Data were analyzed using thematic analysis. RESULTS: Three themes were identified: (1) decisions triggered by declining health and broad in scope, (2) challenges to decision-making and (3) factors influencing decision-making. Participants' experiences with health-related decision-making demonstrated that decisions were triggered when health declined. Yet, decisions that impact disease progression were being made in stage 3. Decision-making was made difficult due to lack of information, complex co-morbidities, and poor resource utilization. However, the structure and nature of the medical appointment, supportive caregivers, and resources served to remove challenges. CONCLUSION: Decision-support interventions must train patients and caregivers to be empowered participants in answer-seeking behaviours upstream of advanced illness. PUBLIC CONTRIBUTIONS: This work was conducted in full collaboration with a community advisory board consisting of patients with CKD, caregivers and clinicians. These members are noted in the acknowledgement section, and those who worked with the team to develop the interview guide, study protocols, and manuscript preparation are included as authors. As part of their role, advisory members met monthly, providing input on recruitment, study progress, inclusion of diverse voices and added relevance to study findings.

Patients face numerous health-related decisions once advanced chronic kidney disease (CKD) is diagnosed. Yet, when patients are underprepared to navigate and discuss health-related decisions, they can make choices inconsistent with their expectations for the future. This pilot study, guided by the multiphase optimization strategy and community-engaged research principles, aimed to explore the acceptability of a developed patient component to a decision-support training intervention called ImPart (Improving Decisional Partnership of CKD Dyads). CKD patients and their family caregivers were recruited from an urban, academic medical center. Eligibility criteria for patients included a diagnosis of stage 3 or higher CKD (on chart review), and caregivers participated in interview sessions only. Patients without a caregiver were not eligible. The intervention was lay coach, telephone-delivered, and designed to be administered in 1-2 week intervals for 4 sessions. An interview guide, developed in collaboration with an advisory group, was designed to ascertain participants' experiences with the intervention. Caregiver interviews focused on changes in the patient's decision ability or engagement. Thirteen patients and eleven caregivers were interviewed. The program was viewed as "good" or "beneficial." Three themes capture the intervention's impact- 1) Frequent and deliberate disease-focused communication, 2) Future planning activation, and 3) Coaching relationship. The piloted intervention was successfully delivered, acceptable to use, and found to promote enhanced disease and future planning communication. By undergoing this work, we ensure that the patient component is feasible to use and meets the needs of participants before implementation in a larger factorial trial.

BACKGROUND: Acknowledging patients' spiritual concerns can enhance well-being and is essential to patient-centered chronic illness care. However, unmet spiritual care needs remain a major area of suffering, particularly among under-resourced populations. Limited research exists on how spiritual concerns are acknowledged and integrated into the care of chronically ill older Black patients in these settings. PURPOSE: This study aimed to explore the spiritual concerns and needs of chronically ill older Black patients from under-resourced areas and to identify available spiritual support resources for patients seeking healthcare through a community safety net health service. METHODS: Using a qualitative descriptive design, we interviewed 13 chronically ill, older Black patients and key clinicians (physicians, nurse practitioners, allied health, and clergy). The interview focused on patients' illness-related spiritual concerns, sources of distress, and desired spiritual support resources. Participants also reviewed the Spiritual Care and Assessment Intervention (SCAI), a spiritual care intervention, and provided feedback on its content, format, and delivery. RESULTS: Five themes emerged from qualitative interviews: (1) spirituality is integral to seriously ill Southern patients; (2) clinicians should strive to address spiritual health in encounters; (3) socioeconomic barriers and competing demands impact priority of accessing spiritual care services; (4) spiritual care interventions should be patient-driven, compassionate, and fully integrated into medical care as a comprehensive service; and (5) participants thought SCAI was appropriate for use but should be shortened and provided in-person to increase accessibility. DISCUSSION: Findings will inform the development and piloting of small-scale culturally responsive spiritual care intervention tailored for seriously ill older Black adults in an ambulatory care setting.

Objective: There is limited research examining palliative care (PC) knowledge and experiences in patients with cervical cancer. As this may inform who may benefit from specialty PC services, we investigated PC awareness, perspectives, needs, and acceptability in this population. Methods: We conducted a qualitative study of patients with newly diagnosed (<12 months) cervical cancer. Eligible patients were > 18 years old and English-speaking. Semi-structured interview topics included knowledge/perceptions of PC, knowledge/perceptions of hospice, and experiences with PC or hospice. Participants were then read a brief definition and overview of services provided by PC (education). We then explored perceptions of PC acceptability and timing. Interviews were deidentified, professionally transcribed, and coded. Codes were grouped into categories and themes. Results: Seventeen patients participated. Median age was 52, 64 % were white, all had insurance. 35 % had stage I disease, 17.6 % stage II, and 47 % stage III. Most had minimal PC knowledge (12/17, 70.6 %) but were aware of hospice (16/17, 94.1 %) and understood it as end-of-life care (10/17, 58.8 %). Following our education, most felt PC would be beneficial (13/17, 76.5 %), and favored early introduction in their care (11/17, 64.7 %). We identified four main themes: two pre-education (PC knowledge is lacking, hospice is well-understood and favorably viewed) and two post-education (PC would provide an unmet benefit, early PC is preferable). Conclusions: PC knowledge was limited. However, following brief education, most patients found it desirable and favored early integration. This highlights the need for further research on developing early PC initiatives for patients with cervical cancer.

[This corrects the article DOI: 10.1371/journal.pone.0305291.].