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

Author:

Piil Karin12ORCID,Locatelli Giulia3ORCID,Skovhus Stine Laegaard1,Tolver Anders4,Jarden Mary14

Affiliation:

1. Copenhagen University Hospital, Rigshospitalet, Denmark

2. Roskilde University, Denmark

3. University of Milano-Bicocca, Monza, Italy

4. University of Copenhagen, Denmark

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.

Funder

Novo Nordisk Fonden

Publisher

SAGE Publications

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