A Systematic Literature Review of Relational Autonomy in Dialysis Decision Making.

Nephrology interdisciplinary guidelines, professional codes of ethics, principle-based ethical standards, and literature promote patient autonomy and self-determination through shared decision making as ethical practice. Healthcare professionals are accountable for practice that is mindful of the impact of cultural diversity and community on the values and beliefs of the patient, an important part of shared decision making (SDM). Despite previous research regarding dialysis decision making, relational autonomy in chronic kidney disease (CKD) and end-stage kidney disease SDM conversations is not well understood. This systematic literature review used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework for identifying peer-reviewed literature on SDM for CKD. The findings were summarized into four broad themes: (1) promoting autonomy is a foundation of medical caring; (2) providers have a responsibility to respond to their asymmetrical social power; (3) autonomy is situated within the context of the patient; and (4) dialogue is a tool that negotiates clinical recommendations and patient goals. The caring practices of promoting autonomy with a dialogical resolution of a conflict acknowledging the interdependence of the parties and the patient's social-relational situatedness support a perspective of relational autonomy in dialysis decision-making practice and research.

Kidney Failure Patients' Perceptions and Definitions of Health: A Qualitative Study.

Rationale & Objective: Patients with kidney failure who have used multiple treatment modalities are a unique source of information for how different options may best fit their values. We aimed to understand how people interpret their health and kidney failure treatment experience to inform providers who facilitate shared decision-making conversations. Study Design: This qualitative, interpretive phenomenological study explores how patients with kidney failure interpret health throughout their treatment trajectory. Setting & Participants: We recruited a purposive sample of patients who had used 3 or more kidney failure treatment options, including transplant and dialysis from transplant clinics and online support groups, for semi-structured interviews. Eligible participants were over 18 and spoke English for a total of 7 current transplant, 10 current home dialysis, and 1 current in-center patient. Analytical Approach: A 6-step iterative process of data analysis occurred concurrently with data collection. Results: Half of the 18 participants were Black; 67% were women. Three interrelated themes emerged from interviews: ability to engage in meaningful activities; working for balance; and living in context. Participants evaluated health according to their ability to engage in meaningful activities while balancing their emotional and physical needs with their life goals. When their social and treatment environments supported their autonomy, participants also considered themselves healthy. Limitations: The inclusion of only English-speaking patients limits the transferability of findings. A longitudinal design, repeated interviews, observation, and dyadic interviews would increase the health care providers' understanding and interpretation of health. Conclusions: The themes demonstrated patients evaluated health based on ability to engage in meaningful activities while maintaining balance. The treatment context, particularly how health care providers responded to patients' physiological experience, autonomy, and power, influenced interpretation of patient treatment experiences. Integrating patient interpretations of health with quantitative measures of treatment effectiveness can help health care providers better partner with patients to provide effective care for kidney failure.

Dyadic shared decision-making in dialysis: An interpretive phenomenological inquiry.

INTRODUCTION: Caregiver and family engagement in dialysis decisions varies over the end-stage kidney disease treatment trajectory, with family preferences as primary consideration factors for patients starting dialysis. This interpretive phenomenological study explores how dialysis patients and their partners experience dialysis decisions. METHODS: Thirteen patient-decision partner dyads (26 participants) were interviewed together about their experience with dialysis decision-making. A 5-step iterative process of data analysis occurred concurrently with data collection. RESULTS: The patients received in-center hemodialysis (n = 6) and home dialysis (peritoneal dialysis or home hemodialysis (n = 7). Decision partner relationships included romantic partners (n = 9) and either parent, sibling, or friend (n = 4). Fifty-7 percent of participants were White; 46% of patients were women, and 76% of decision partners were women. Three interrelated themes were identified: Their body, but not their life; Seeking semiliberation, and Decision-making is caring. DISCUSSION: Dyads were attuned to patient autonomy while managing the collateral effects of dialysis. Shifting the paradigm of dialysis treatment decisions from promoting patient autonomy to dialogues exploring relational autonomy helps providers balance the competing demands of incentivized standards to promote home dialysis with patients and their decision partners realities. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Seeking gender-affirming medical care: A phenomenological inquiry on skillful coping with transgender and non-binary adults in the United States Midwest.

This study sought to understand how transgender and gender non-binary (TGNB) individuals skillfully cope with healthcare services and to explore how childhood experiences impact expectations, habits, and meaning-making when utilizing healthcare services. Using an interpretive phenomenological approach, we sampled 17, White TGNB adults in the United States, ages 19 to 57, using semi-structed interviews about childhood experiences with healthcare utilization and adult experiences seeking genderaffirming healthcare. Analysis identified one main theme-Anticipate the worst in healthcare and be pleasantly surprised-and three subthemes: i) contrast between positive childhood and negative adulthood experiences in medical care; ii) coping practices for the worst; and iii) finding your unicorn doctor and medical staff for pleasant experiences. Results indicate participants experienced a disruption and acquisition of new coping practices in healthcare settings and the cultivation of a radical imagination for a more liberated medical world for TGNB people. Implications for providers and medical offices for empowering TGNB adults are described.

The promise of symptom-targeted intervention to manage depression in dialysis patients.

Research with tens of thousands of dialysis patients has established a link between depression, health-related quality of life scores, survival, and hospitalizations. In fact, physical and mental functioning scores are as predictive of death and hospitalization as Kt/V and albumin. Some models for managing depression in the dialysis clinic have been developed. These models address barriers to accessing community mental health services. They also promote collaboration between the nephrology social worker and nephrologist to assurethat patients receive counseling and/or antidepressant medications when they need them. Part 1 of this article will introduce a promising new method designed for nephrology social workers to help patients manage depression. This method, known as symptom-targeted intervention (STI), can be used in brief intervals with patients while they are receiving dialysis treatments to help reduce depressive symptoms and improve quality of life. The second part of this article, which will appear in the June issue of Nephrology News & Issues, will report the outcomes of a 17-state pilot study in which more than 45 nephrology social workers used brief, focused STI methods with more than 75 patients in the dialysis clinic setting. The impact of STI on depression and quality of life in this sample will be explored as well as how those outcomes may impact hospitalizations, improve patient survival, and contain costs in a bundled reimbursement environment.

Part 2. The promise of symptom-targeted intervention to manage depression in dialysis patients: improving mood and quality of life outcomes.

The Practice Outcome Evaluation of using Symptom Targeted Intervention (STI) to manage depressed mood in dialysis patients reviewed social worker experiences and observations using STI. The evaluation was guided by the following questions: 1. What is the feasibility of STI in nephrology social work? 2. What is nephrology social worker comfort level with clinical assessment, intervention, and tracking? 3. What is the potential efficacy of STI on reducing depression? Initial results suggest that STI enhances existing nephrology social work skills in identifying, treating, and tracking outcomes of patient issues requiring clinical intervention. Most social workers spent 1.5 hours over a six-week period using STI techniques to address symptoms of depression with a patient. This rather short period of intervention led to a reported improvement in PCS and MCS scores of 51.6% and 61.3% of patients, respectively, and improvement in CES-D scores in 72.1% of patients. While this practice outcome evaluation is limited by how social workers were selected and the small number of patients, it demonstrates options for further study of the efficacy of STI in reducing depression. The brief time invested in training holds promise for impacting nephrology social work and improving patient and dialysis clinics' outcomes.

KDQOL-36 and the interdisciplinary team.

Social workers are challenged with integrating the Kidney Disease Quality of Life -36 survey results into meaningful intervention for the patient and interdisciplinary team. To face this challenge, the social worker and interdisciplinary team need an understanding of the background and research of quality of life measures, a process for completion of the survey, a tool to score the survey, and finally a process for interdisciplinary development of goals based on survey results. This article reviews the conditional requirements for administering a quality of life survey and the model used to introduce the survey to center practice.

The potential role of cortisol as a biomarker of physiological interdependence in romantic couples: A systematic review.

Significant evidence supports the link between relationships and health including the potential for interpartner regulation of intrapersonal physical and mental homeostasis. Physiological interdependence is proposed as a term to summarize the adaptive process in which partners demonstrate physiological contagion that evolves with repetition to create a new homeostatic state regulating individual physiological functioning. Through a systematic review consistent with the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P), the present study reviewed the literature examining the interdependent role of diurnal cortisol with romantic couples. The literature search yielded thirteen articles that included statistical modeling testing interdependence between partners in a couple and at the individual level. Five themes emerged from the literature including cortisol synchrony, cortisol and health, cortisol and emotions, cortisol and internal relationship factors, and cortisol and factors external to the romantic relationship. Findings suggest a potential for romantic partners to regulate one another's emotional and physiological states, but this process may not be present in both partners. More research is needed to substantiate a regulatory role as the current literature supports correlations.

Cancer patients' interest and preferences for music therapy.

The reason for lack of routine integration of music therapy into healthcare may be that patients are not comfortable being involved in a music therapy intervention. Therefore, the goal of this study was to examine cancer patients' interest in and preferences for using 2 types of music therapy interventions, music-making and music listening. Sixty-five patients completed the Music Interest Survey in addition to standardized measures of coping, affect, anxiety, and fatigue. Results suggest adult cancer patients are interested in music therapy, especially music listening. Patient interest and preference were associated with negative affect, anxiety, age, perceived intervention-specific benefits, barriers, and self-efficacy. Findings highlight the need for a comprehensive assessment of patient needs and preferences prior to intervention.

Music imagery for adults with acute leukemia in protective environments: a feasibility study.

BACKGROUND: Patients receiving intensive chemotherapy can experience increased distressed related to both the cancer diagnosis and treatment isolation. If not addressed, distress can lead to anxiety, depression, and post-traumatic stress disorder. The purpose of this study was to determine the feasibility and possible benefits of a music imagery intervention for patients hospitalized in a protective environment for the treatment of acute leukemia or high-grade non-Hodgkin's lymphoma. MATERIALS AND METHODS: Adults receiving intensive myelosuppressive chemotherapy in a protective environment were randomized to standard care or standard care plus music imagery. The music imagery sessions occurred twice weekly for up to eight sessions. Patients were encouraged to use the music imagery daily. RESULTS: The principal criteria of feasibility were rate of consent, rate of completion of scheduled sessions, and rate of questionnaire completion. Forty-nine out of 78 patients consented, a 63% consent rate. Seventy-two percent of all scheduled music imagery sessions were completed. The rate of questionnaire completion was 60% with missing data because of illness severity and early discharge. The principal outcomes of benefit (e.g., efficacy) were positive and negative affects, fatigue, and anxiety. Both groups improved over time on all outcomes (all p < 0.001). However, a subgroup of individuals with low baseline negative affect who received the intervention reported significantly less anxiety at discharge than individuals with low baseline negative affect who did not receive the intervention. CONCLUSIONS: Music imagery is feasible for adults with acute leukemia in protected environments. Patients with lower initial distress may benefit from a music imagery program in terms of reduced anxiety at discharge.