(318) Exploring Wellness in the CF Community

Background: Advances in treatment and care in combination with a growing cultural emphasis on wellness create an opportunity to better understand the concept of wellness as it relates to people with CF. Our goal was to learn about how individuals in the CF community define and think about wellness.

Methods: Qualitative interviews were conducted with 26 people with CF, parents of people with CF, clinicians, and CFF staff members between July and October 2020. Individuals were asked 1) how they define wellness; 2) how they view the relationship between mental health and wellness; 3) how they see wellness within and beyond care centers; and 4) what could be the role of the CF Foundation in supporting well-being in the CF community. Individuals were selected for interviews if they were involved in wellness-related work and/or had expressed interest in the topic of wellness. A snowball method was employed to add additional interviews based on participant recommendations.

Results: Many common themes emerged from these interviews including that wellness represents a holistic approach to health and is a broad umbrella term encompassing physical, mental, emotional, social, and financial health among other dimensions. There was broad agreement that the approach to wellness is personal and must be tailored to the individual. Additional concepts that emerged in multiple interviews were that wellness is about the lived experience of health; activities to support wellness reflect an individual’s values; and engaging in wellness requires self-awareness, paying attention, and deliberate action. Nine dimensions of wellness were described: physical, mental, emotional, social, financial, occupational, environmental, spiritual, and intellectual, which was consistent with various published wellness frameworks. Respondents suggested that the CF Foundation is a go-to place for support around financial and social well-being and should continue to be a focus for programs and services. A definition for wellness was formed based on learnings from interviews: Wellness is the intentional engagement in activities that support an individual’s sense of thriving and well-being.

Conclusions: Interviews were exploratory in nature and thus limited to people currently engaged in wellness and known to the CF Foundation. The sample was not representative of the broad CF community nor the diversity of experiences and did not include Spanish speakers, people from diverse economic and ethnic backgrounds, or people who are less engaged with the CF Foundation. Additional perspectives are needed to inform messaging, resources, and opportunities to better address wellness with existing programs. These exploratory interviews were helpful in surfacing broad themes and ideas around wellness, and in helping to formulate a framework for thinking about and addressing well-being in the CF community.

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