Persona
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Goals
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Characteristics
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Clinical Implications/Actions
(Integration Phase)
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Maria-mother, 1 y.o. Beatrice
Age, 26, Hispanic, married, homemaker
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- 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.”
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- 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
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- 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
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Liam-father, 4 y.o Maddie, 2 y.o Brian
Age 28, Caucasian, married, homemaker
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- 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.”
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- 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
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- 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
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Anna-mother, 3 y.o. Francesca
Age, 31, Caucasian, married, works from home as engineer
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- 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.”
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- 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
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- 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
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Barbara-mother, 7 y.o Henry
Age, 35, Black/African American, married, homemaker
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- 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.”
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- 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
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- 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
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Charlie- father, 9 y.o Jacqueline (with CF) and her 2 sisters (without CF)
Age, 30, Caucasian, married, accountant
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- 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.”
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- 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
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- 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
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Danielle-mother, 11 y.o, Luke
Age, 43, Caucasian, married, part-time retail associate
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- 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.”
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- 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
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- 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.
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Emma-mother 13 y.o, Molly
Age, 37, Caucasian, single, Registered Nurse
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- 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”
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- 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
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- 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
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Floyd-father, 4 y.o Oliver
Age, 36, Caucasian, married, data analyst
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- 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.”
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- 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
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- 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
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