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Table 5 Descriptions and implications of clinical personas (integration phase)

From: Data driven decision making to characterize clinical personas of parents of children with cystic fibrosis: a mixed methods study

PersonaGoalsCharacteristicsClinical Implications/Actions
(Integration Phase)
Maria-mother, 1 y.o. Beatrice
Age, 26, Hispanic, married, homemaker
• Child will become more independent
• Child is happy and has a family of her own
• Illustrative quote “I don’t put her in a bubble, what’s the point? We don’t limit her in what we let her do because of CF.”
• Minimal community support through social media and church
• Live 6 miles from CF center
• Regularly forgets enzymes and treatments
• Child’s BMI in 30th percentile
• Eats breakfast with family every AM
• Often naps mid-day
• Immediate focus needed on familial support.
• Medical intervention is not as important as mental health
• Because family lives near the CF center, clinicians could offer monthly visits and coordinate with social workers and staff psychologists if applicable
Liam-father, 4 y.o Maddie, 2 y.o Brian
Age 28, Caucasian, married, homemaker
• Children should be true to themselves, make good decisions, and live to be an old age
• Illustrative quote “We just treat them like every day is their last.”
• Active on social media for community support, but not in church
• Live far from CF Center
• Anxious about getting in every treatment, highly adherent
• Children’s BMI in 60th Percentile
• Regularly plays outside with children
• Spends time with wife each night
• Family has good adherence with CF, but concerning that they live everyday as if it is their last, which may present as anxiety
• Clinicians should partner with family to make care planning a team aspect, which can help normalize CF
• Offering family clinical research opportunities to enroll, in order to help alleviate some anxiety and provide sense of purpose
• Ensure family is properly connected with online groups. Imperative that the family is getting proper social media information and support
• Connect family with a learning network monitored by the CF center to enable them to receive proper support
Anna-mother, 3 y.o. Francesca
Age, 31, Caucasian, married, works from home as engineer
• For Francesca to enjoy her life, get the best education, and be an outstanding adult
• Illustrative quote: “CF fits in like anything else. I’m a germophobe, but I’m not OCD. That’s where my faith comes in. That’s a huge thing.”
• Not active on social media, but active in church community
• Live 15 miles from CF center
• Highly adherent to treatments
• Child’s BMI in 50th percentile
• Views relationship with husband as a team
• Family is adherent and likely to incorporate changes if needed
• Type of family that should continue to receive support, but there is not a strong need to intervene
Barbara-mother, 7 y.o Henry
Age, 35, Black/African American, married, homemaker
• Happiness
• Good job later in life
• Independence with treatment
• Illustrative quote: “I just want him to be happy. Hopefully he’ll find a really good job and a husband or wife, whichever way he goes, and to have kids and be a good person.”
• Active in church community but not social media
• Live 30 miles from CF center
• Not consistently adherent with treatments
• Does not plan ahead or have a regular routine
• Conflicted marriage
• Personal health issues, depression
• Seems family is in chaos on how to work in day to day treatments
• Family tends to make spur-of-the-moment decisions, a likely reason they are forgetting to be adherent
• Important that the team focus on the most important medical outcome of the child as to not overwhelm this family
• Helpful to focus on improving family adherence to critical treatments, such as pancreatic enzymes
• Educating this family is important; since they live further away from the CF center, offer telehealth with a dietitian and social worker to provide needed support
• Inform family on financial aid options for CF care to help alleviate stressors and promote focus on care
Charlie- father, 9 y.o Jacqueline (with CF) and her 2 sisters (without CF)
Age, 30, Caucasian, married, accountant
• That child understands the importance of eating and nutrition
• Illustrative quote: “Since Jacqueline is older now, it is easier because she is independent enough to do treatments herself.”
• Active in church community, regular attends bible study
• Live near CF center
• Adherent to treatments, child is independent enough to do majority of treatments
• Childs BMI above 50th percentile
• Plans family time around CF treatments
• High functioning family does good job of adhering to medication
• Daughter is becoming more independent, so team can focus on educating the child to do her own treatments
• Fostering her independence can make for a smooth transition into adolescence and alleviate some stressors this family may face
Danielle-mother, 11 y.o, Luke
Age, 43, Caucasian, married, part-time retail associate
• Typical life for child
• Ability for child to have many friends
• Wants Luke to be part of a sports team
• Major goal is for Luke to graduate high school
• Illustrative quote: “Things are just so difficult right now trying to change our lives around CF, but we are trying to make it work.”
• Not active in church or social media community
• Lives 55 miles from CF center
• Adherent and anxious about treatments due to Luke’s late diagnosis
• Child’s BMI below 40th percentile
• Feels late diagnosis makes it difficult for Luke to be involved in sports and other activities
• Spend a lot of time together watching TV and making dinner as a family
• Often, when people are worried about disease progression, clinicians can see high adherence
• Family still struggling with their son’s BMI. Using goal setting with providers and the child to incorporate him and the family onto the team could be helpful
• Goal setting will also encourage independence with the child with appropriate oversight from the team
• Family should identify long-term personal goals for Luke and work with the team to give him the medical support he needs to achieve these goals.
• Offer family opportunities to discuss their situation with other families of children diagnosed later in life; may also be beneficial in order to help them adjust to this new aspect of their lives.
Emma-mother 13 y.o, Molly
Age, 37, Caucasian, single, Registered Nurse
• Understand the importance of treatments
• Begin to get into a routine
• Illustrative quote: “Well, I just had to change my life a lot (since CF). The feasibility of keeping drugs on you seems to get harder and harder at school. I think we have control over it. She doesn’t really think that far ahead, she’s more day by day. CF is not a bad thing in our life, just part of our life. It’s a routine”
• Not active on social media or in church community
• Live near CF center
• Adherent about 50–75% of the time
• Child’s BMI in 10th percentile
• Feels like they are constantly busy
• Difficultly getting proper nutrition, often stopping to eat fast food
• Seems family has a good handle on their CF diagnosis and views CF care as part of their life
• Room for nutrition improvements, and they are struggling with completing airway clearance treatments
• Given family’s busy schedule, the team should focus on helping the family reschedule their routine and restructure their day to put more emphasis on improved nutrition and fitting in treatments
Floyd-father, 4 y.o Oliver
Age, 36, Caucasian, married, data analyst
• Oliver to have a typical life and good education
• Continue to work to provide for his family
• Illustrative quote: “What I’m focused on now is getting to work so I can continue to have insurance to afford healthcare.”
• Not involved in social media or church community
• Live far from CF center
• Mostly adherent to treatments, but not sure
• Child’s BMI in 35th percentile
• Works overtime most weeks
• Tries to spend as much time with his son as possible
• Doesn’t see lack of adherence as a problem
• Parents may come into the CF clinic and seem like they have high self-efficacy and are adherent; however, upon further probing it can be revealed that there are issues with completing treatments, as is the case with this family
• Sometimes parents do not always think their lack of adherence is a problem because there is no visible evidence to support this
• Offer a CT/MRI for evidence-based perception, which can show actual problems with non-adherence
• Closer follow-up with this family is also recommended via monthly appointments and/or telehealth