Qualitative Research: Exploring Patient and Caregiver Unmet Needs
Caregiver Quotes – Self Esteem is “THE” issue
The physical manifestation of the disease deeply affects the self-esteem of tweens and teens as they navigate adolescence. Pediatric patients feel bad about how they look and worry about how others may judge them based on sores alone. This erodes their confidence and their feeling of self-worth.
• It is very difficult for my daughter to live with the condition because it makes her feel different from other children and that is very tough and isolating for any child, particularly as she gets older… Emotionally, the disease makes my daughter's self-esteem suffer, she feels isolated and she feels …show more content…
I worry about her self-esteem, I’d definitely take her if she wanted to talk to somebody about it – Irene (Caregiver, Tween Girl) IDI
• I feel insecure and discouraged because of the way it makes me feel physically and emotionally. I want to feel social, confident and fit in with others – Alexa (Teen Girl) IDI
There’s a big social cost to low self-esteem, which is all the more dramatic during the adolescence as the social sphere is how they form identify and figure out how to be in the world. As a result, pediatric patients withdraw socially particularly during flare-ups. They limit their social engagements and in the presence of friends and peers they are introverted so as to draw less attention to themselves. they consciously limit the opportunities for friends to ask probing questions. For those patients with severe PSO, it’s as if they become shut-ins during flare-ups
• I know it is affecting her confidence and self-esteem because she stays in her room – Edna (Caregiver, Teen Girl) NY IDI
• She doesn't like feeling self-conscious. She doesn’t like feeling different. It makes her very self-conscious about her body. She is self-conscious. She doesn’t want to go out sometimes because of it – Ladine (Caregiver, Teen Girl) NY …show more content…
His personality has changed because of the disease – Arianne (Caregiver, Teen Boy) IDI
• My daughter's life with this condition has sometime made this beautiful overly confident individual seems total self-conscious and at times not wanting to socialize much with friends – Ladine (Caregiver, Teen Girl) Blog
• PSO can affect self-esteem. It holds me back from soccer, football and sports I’d like to play. Fun things like clubs. Holds you back – Jyair (Tween Boy) IDI
• She gets depressed about it sometimes. She usually just withdraws. Most of the time the skin is why she’s upset. She doesn’t like wearing short sleeves or shorts. She doesn’t want anybody to see it. She used to do a youth group a lot more, but because of her skin I don’t think she goes as much anymore, which is really hard – Irene (Caregiver, Tween Girl) IDI
• It makes me less confident in myself. I choose not to go out. I feel left-out like an outcast – Celine (Teen Girl) NYC IDI
• When I feel like I look different it makes me feel out of place, which makes me feel less confident. Like if there was a pool party and I wasn’t feeling confident because I had a flare up I would probably not go. I don’t feel as social or as outgoing, so it’s affecting me – Alexa (Teen Girl)