Defining Family-Centered Cancer Care: A Group Concept Mapping Study.

Abstract

Background: Family-centered cancer care is widely recognized as important, but the absence of an actionable definition limits its consistent implementation in clinical settings. Moreover, efforts to define this concept have often excluded diverse perspectives, potentially exacerbating existing disparities.

Aims: Researchers sought to engage diverse groups of family members of individuals with cancer to define key components of family-centered cancer care.

Methods: In this sequential mixed-methods group concept mapping study, researchers purposefully sampled biological, legal, and chosen family members of individuals with cancer to remotely brainstorm, rate, and sort responses to the following prompt: "A specific thing cancer centers can do to support patients' families is _________." Participants based their ratings on prompt responses' perceived importance and truth in their care experiences. Multidimensional scaling and hierarchical cluster analysis generated point and cluster maps illustrating relationships among responses, while descriptive statistics of response ratings identified strengths and opportunities in the provision of family-centered care.

Results: Participants included 121 family members, predominantly spouses/partners (53%) and adult children (22%). Over half (62%) were female, and their mean age was approximately 55 years. Participants grouped 86 responses into five clusters: Facility Characteristics, Financial Assistance, Family Support, Clinical Operations, and Family Education. On average, participants endorsed all (100%) of the responses as important and recognized most (78%) as true in their own care experiences.

Conclusions: Family members acknowledged the importance and receipt of family-centered cancer care but also identified opportunities for improvement. Addressing these opportunities would strengthen family support, ultimately benefitting both patients and families.