Comparison Between Helpful and Missing Resources Identified by Patients with End-Stage Liver Disease and Their Caregivers: A Content Analysis †.

Patients with end-stage liver disease (ESLD) and their caregivers experience extensive physical, psychological, and social burdens and needs for resources. However, empirical evidence on patients' and caregivers' specific reported use of resources to help manage ESLD is lacking. Understanding the ty...

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Published in:Nursing Reports Vol. 16; no. 3; pp. 95 - 116
Main Authors: Rosenkranz, Susan J., Hiatt, Shirin O., Leatherwood, Amy, Chang, Michael F., Hansen, Lissi
Format: research tables/charts Journal Article
Published: MDPI Mar2026
Online Access:View this record in EBSCOhost
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      dt: Mar2026
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      pub: MDPI
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        atl: Comparison Between Helpful and Missing Resources Identified by Patients with End-Stage Liver Disease and Their Caregivers: A Content Analysis †.
      aug:
        au:
          Rosenkranz, Susan J.
          Hiatt, Shirin O.
          Leatherwood, Amy
          Chang, Michael F.
          Hansen, Lissi
        affil: School of Nursing, Oregon Health & Science University, 3455 S.W. U.S. Veterans Hospital Rd. Portland, OR 97239, USA
      sug:
        subj:
          Liver Failure Therapy
          Caregivers Psychosocial Factors
          Health Services Needs and Demand Evaluation
          Health Resource Utilization Evaluation
          Funding Source
          Human
          Male
          Female
          Middle Age
          Aged
          Qualitative Studies
          Prospective Studies
          Content Analysis
          Data Analysis Software
          Palliative Care
          Support, Social
          Severity of Illness
          Needs Assessment
          Questionnaires
          Middle Aged: 45-64 years
          Aged: 65+ years
          Male
          Female
      ab: Patients with end-stage liver disease (ESLD) and their caregivers experience extensive physical, psychological, and social burdens and needs for resources. However, empirical evidence on patients' and caregivers' specific reported use of resources to help manage ESLD is lacking. Understanding the type and helpfulness of resources used could strengthen clinical care to address individual needs for resources. Aim: To examine and compare resources patients and caregivers identified as being most helpful in managing ESLD in relation to resources they felt would be helpful. Methods: Patients with ESLD and their caregivers responded in writing to two open-ended questions as part of a survey: (1) What resources have you found most helpful in dealing with patient's liver disease? and (2) What resources would be helpful in dealing with patient's liver disease? Conventional content analysis was used to identify resource categories. Results: A total of 192 patients and 198 caregivers completed surveys. We identified two major resource domains—medical and non-medical—and five categories within each. Analysis revealed participant group- and disease severity-based differences in helpful resources. Conclusions: Proactively engaging patients and caregivers early in the course of illness to identify relevant resources that might facilitate ability to manage ESLD. An interprofessional care approach would facilitate efforts supporting financial, social, spiritual, emotional, and mental health needs. Future longitudinal research of unique resource needs along the disease trajectory may help to develop effective interventions.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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