A Shifting Paradigm Toward Family-Centered Care in Neuro-Oncology: A Longitudinal Quasi-Experimental Mixed-Methods Feasibility Study

Karin Piil, Giulia Locatelli, Stine Laegaard Skovhus, Anders Tolver, Mary Jarden

Abstract

Family-centered intervention can help families facing illness-related issues. We investigated the feasibility of Family and Network Conversations (FNCs) in high-grade glioma patients and their families. Quasi-experimental feasibility study with longitudinal mixed-methods design. Patients and families were invited to three FNCs over 1 year. They completed questionnaires at four time points and expressed their perspectives on the intervention through telephone interviews. Nurses' perspectives were collected in a focus group. Twenty-one patients and 47 family members were included. On average, patients were 66 years old, mainly male, married, living with caregivers, with unifocal cancer. On average, caregivers were 47 years old, mainly female, being spouses or children of the patient. Quantitative and qualitative data did not always match and expanded each other. Nurse-delivered FNCs holistically addressed families' needs while strengthening family's dialogue and union. Nurses felt empowered, underling that advanced competencies were required. Nurse-delivered FNCs are feasible to provide family-centered care, but they should be tailored to each family's needs.

Original languageEnglish
JournalJournal of Family Nursing
Volume30
Issue number2
Pages (from-to)127-144
Number of pages18
ISSN1074-8407
DOIs
Publication statusPublished - May 2024

Keywords

  • Adult
  • Aged
  • Brain Neoplasms/psychology
  • Caregivers/psychology
  • Family Nursing/methods
  • Family/psychology
  • Feasibility Studies
  • Female
  • Focus Groups
  • Glioma/psychology
  • Humans
  • Longitudinal Studies
  • Male
  • Middle Aged
  • Patient-Centered Care/methods
  • Surveys and Questionnaires
  • family functioning
  • brain tumor
  • mixed-methods
  • patient-reported outcome measures

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