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To co-design a nurse-led family support intervention for patients with cancer and their family members.
An intervention co-design process.
The Experience-Based Co-Design method was conducted in a hospital in northern Spain from January 2024 to February 2025 with nurses, patients and family members, following The Point of Care Foundation's eight steps: observations, individual interviews, editing the trigger film, feedback events, co-design and validation events and celebration event.
Four themes emerged from the integrated dataset. (1) Cancer: a family affair, (2) Needs of patients with cancer and their families, (3) The importance of establishing a trust-based nurse-family relationship and (4) Barriers and facilitators for a family-oriented approach in care. These findings informed feedback events where stakeholders identified critical intervention areas, including family support, illness communication, emotional expression and the importance of trust. Based on these results, the Family CARE-ON intervention was structured around three core components: Engaging, Supporting and Empowering.
This study highlights the value of the Experience-Based Co-Design methodology, with active engagement from stakeholders, to develop a family support intervention in oncology care. Further research is needed to evaluate the feasibility and effectiveness, as well as to explore the implementation and scalability of the intervention in oncological settings.
Co-designing a family support intervention together with stakeholders ensures alignment with their needs and expectations, while also fostering the feasibility of the intervention in clinical practice.
The results show how stakeholders co-designed a family support intervention, drawing from their own experiences and perspectives on the impact of cancer on the family.
Guidance for reporting intervention development studies in health research (GUIDED) and Template for Intervention Description and Replication (TIDieR).
Nurses, patients and family members were involved in designing the family support intervention.
To identify, appraise and describe the characteristics and measurement properties of instruments assessing Family Focused Care in nursing clinical practice using COSMIN criteria.
A systematic review based on COSMIN methodology.
Methodological quality was assessed using COSMIN methodology and evidence quality using the GRADE approach modified by COSMIN.
The databases PubMed, CINAHL, COCHRANE, Web of Science and SCOPUS were systematically searched from inception until September 2024.
A total of 47 studies and 15 instruments evaluating Family Focused Care were included. Seven were designed for measuring professional's perspective, six for family's and two for both. Three instruments, the Family Nursing Practice Scale (FNPS), the Iceland Family Perceived Support Questionnaire (ICE-FPSQ) and the Perception of Family Centred Care Staff and Parents (PFCC-S/P), exhibited the highest methodological quality and robust psychometric properties, including internal consistency, structural validity, reliability and content validity.
The FNPS, the ICE-FPSQ and the PFCC-S/P questionnaires were identified as the most suitable instruments to assess Family Focused Care. Future research should rigorously evaluate their psychometric properties.
This review provides insight into available instruments for measuring Family Focused Care, helping professionals choose the most suitable tools to enhance family involvement, align care with family needs, and improve patient outcomes and family well-being.
Given that the psychometric properties of instruments measuring Family Focused Care have not been systematically assessed, the present review utilised comprehensive methods according to COSMIN.
No Patient or Public Contribution.
PRISMA statement and COSMIN reporting guideline for studies on measurement properties of patient-reported outcome measures.
This systematic review has been registered at the International Prospective REGISTER of Systematic Review (PROSPERO: CRD42022315249).
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