A Systematic Literature Review of Relational Autonomy in Dialysis Decision Making

Sledge, Renata; Meyer, Dixie; Zubatsky, Max; Heiden‐Rootes, Katie; Philipneri, Marie; Browne, Teri

doi:10.1093/hsw/hlab042

Cited by 6 publications

(9 citation statements)

References 32 publications

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“…Relational autonomy, on the other hand, acknowledges the influence of context (e.g., relationships, roles, spirituality, daily routines) and structure (e.g., social norms, sociopolitical, economic) on decision-making (Oshana, 2006). Rather than treatment decision conversations shaped from a perspective of individual autonomy and regulatory adherence (e.g., annual comprehensive patient assessments), the integrated care provider, patient, and DP should consider treatment decisions relationally and therefore engage in ongoing dialogue with the goal of the mutual understanding of experience, motivations, needs, and conditions (Phillips, 2007; Sledge et al, 2022).…”

Section: Discussionmentioning

confidence: 99%

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

Sledge¹,

Meyer²,

Heiden‐Rootes³

et al. 2023

Families, Systems, & Health

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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.

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Section: Discussionmentioning

confidence: 99%

“…13879, 2019). Understanding shared decision-making activities between patient and decision partner (DP) dyads balances HCP accountability to payor and government standards with professional ethical responsibilities (Sledge et al, 2022).…”

mentioning

confidence: 99%

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

Sledge¹,

Meyer²,

Heiden‐Rootes³

et al. 2023

Families, Systems, & Health

Self Cite

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“…For people with kidney disease, discussion of treatment options and preferences through shared decision-making is recommended 1 year in advance of needing kidney replacement 2 8. Shared decision-making gives patients the opportunities to deliberate and carefully weigh the advantages and disadvantages of each individual treatment, using the best available evidence and educational programmes while being supported by healthcare professionals 9–11…”

Section: Introductionmentioning

confidence: 99%

Understanding people’s decisions when choosing or declining a kidney transplant: a qualitative evidence synthesis

et al. 2023

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ObjectivesTo synthesise qualitative research exploring patients’ perspectives, experiences and factors influencing their decision-making preferences when choosing or declining kidney transplantation.DesignA qualitative evidence synthesis.Data sourcesElectronic databases were searched from 2000 to June 2021: PubMed, MEDLINE, CINAHL, Embase, PsycINFO, Web of Science, ProQuest Core Databases for Dissertations and Theses, and Google Scholar.Eligibility criteriaQualitative studies exploring and reporting decision-making preferences of people with kidney disease, which reported influencing factors when choosing or declining kidney transplantation, published in English from high-income and middle-income countries.Data extraction and synthesisTitles were screened against the inclusion criteria. Thematic synthesis was done with the use of the Critical Appraisal Skills Programme qualitative checklist to assess study quality, and assessment of confidence in the qualitative findings was done using the Grading of Recommendation, Assessment, Development and Evaluation Confidence in the Evidence from Reviews of Qualitative Research.Findings37 studies from 11 countries reported the perspectives of 1366 patients with kidney disease. Six descriptive themes were developed: decisional preferences influenced patients’ readiness to pursue kidney transplantation, gathering sufficient information to support decision-making, navigating the kidney transplant assessment pathway, desire for kidney transplantation, opposed to kidney transplantation and uncertainties while waiting for the kidney transplant. A new enhanced theoretical model was developed to aid understanding of the complexities of decision-making in people with kidney disease, by integrating the Theory of Planned Behaviour and the Adaptive Decision Maker Framework to incorporate the novel findings.ConclusionThe synthesis provides a better understanding of the extremely complex decision-making processes of people with kidney disease, which are aligned to their kidney transplantation preferences. Further research is needed to better understand the reasons for declining kidney transplantation, and to underpin development of personalised information, interventions and support for patients to make informed decisions when presented with kidney replacement options.PROSPERO registration numberCRD42021272588.

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“…A preliminary search was conducted of MED-LINE, JBI Evidence Synthesis, the Cochrane Database of Systematic Reviews, and PROSPERO. The search revealed one published scoping review, 18 one scoping review protocol, 19 one systematic review, 20 one systematic realist review, 1 and five protocols of ongoing systematic reviews [21][22][23][24][25] with a similar topic to this scoping review. However, these studies differ from the proposed scoping review with regard to design, study population, major outcomes, or other study aspects:…”

Section: Introductionmentioning

confidence: 99%

“…1 The five protocols of ongoing systematic reviews identified in the preliminary search were registered in PROSPERO from 2017 to 2020. [21][22][23][24][25] The protocol by Sledge 21 aims to investigate shared decisionmaking and relational autonomy rather than investigating available patient involvement interventions. The protocol by Patel 22 aims to describe barriers and facilitators of ACP strategies and palliative care services for patients with organ failure in general, rather than specifically ESKD.…”

Section: Introductionmentioning

confidence: 99%

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol

Buur

Finderup

Søndergaard

et al. 2021

JBI Evidence Synthesis

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The objective of this scoping review is to investigate and map existing empirical evidence on patient involvement interventions helping patients with end-stage kidney disease to make end-of-life care decisions about kidney services. Introduction:Patients with end-stage kidney disease have a high disease burden and mortality rate. Despite this, kidney services differ in how they offer and integrate end-of-life care, if it is offered at all. Some countries have established advance care planning protocols to encourage patient involvement when offering end-of-life care options as part of end-stage kidney disease care. However, there is a limited understanding of the components of patient involvement interventions designed to support patients with end-stage kidney disease making decisions about end-of-life care. Inclusion criteria:The review will consider studies on patient involvement interventions concerning end-of-life care decisions for patients with end-stage kidney disease. A broad definition of patient involvement interventions will be used. Studies on interventions that do not involve patients or relatives will be excluded. The review will focus on interventions applied to kidney health care and other services, such as community-based health care.Methods: MEDLINE, Embase, Scopus, and CINAHL will be searched. The literature will be screened for inclusion by two independent reviewers. Data synthesis will be conducted through relational analysis investigating patient involvement interventions and relevant information in line with the review objective and questions. Data will be extracted and listed in the data extraction instruments, accompanied by a narrative summary describing how the results relate to the review objective.

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A Systematic Literature Review of Relational Autonomy in Dialysis Decision Making

Cited by 6 publications

References 32 publications

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

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

Understanding people’s decisions when choosing or declining a kidney transplant: a qualitative evidence synthesis

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol

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