Parental Perspectives on Adolescent Experiences of Girls with Physical Disabilities: Implications for Pediatric Urologic Counseling
Mae Crumbley, BS, MBA, Jodi Kreschmer, MSW, Allison Lee, N/A, Gregory Mowatt, N/A, Daniela Wittmann, PhD, LMSW, Courtney Streur, MD.
University of Michigan, Ann Arbor, MI, USA.
BACKGROUND: Adolescence is a critical time for a child to prepare for adulthood by achieving increasing autonomy over their self-care and learning to navigate adult relationships. Having a physical disability undoubtedly influences this experience. Many of these adolescents struggle, leading to poor long-term health outcomes. We sought to gain a better understanding of the experience of adolescence for people with physical disabilities from the perspective of their parents to learn how to more successfully support both adolescents and parents during this time.
Methods: Parents of adolescent girls ages 7-26 with a physical disability were recruited through a combination of convenience, purposive, and snowball sampling. Semi-structured interviews were conducted, inquiring about the experience of adolescence. Interview coding was conducted by three research team members, including one with lived experience, using Grounded Theory Procedures. Codes were categorized into higher-level themes.
Results: Twenty-one mothers of girls (median age 13) with spina bifida (10), cerebral palsy (9), spinal cord injury (1), or other physical disability (1) participated. Seven themes emerged, including 1) amplification of differences during puberty 2) barriers to peer relationships 3) facilitators of peer relationships 4) romantic relationship interest 5) relationship opportunities 6) stability of parent-child relationships, and 7) desire for independence. Parents perceived that the differences between their daughters and their non-disabled peers became more apparent during adolescence, prompting new self-consciousness. Parents felt their daughters had difficulties relating to peers whether they were in mainstream or special education classes, feeling they did not have a “match” to their physical and sometimes cognitive disability. Some parents felt their daughters struggled with peer and romantic relationships, whether due to preferring to be alone, having few opportunities for independent peer interactions, or lacking an understanding of mature relationships. Other parents reported their daughters worried about how their disability may impact a romantic relationship. Parents felt they maintained a close relationship with their daughters through adolescence due to navigating her complex medical journey together. Despite this, parents also felt their daughters were interested in increasing their independence.
Conclusions: Parents felt adolescence for their daughters was uniquely impacted by having a physical disability. These findings can inform urologists caring for these girls during adolescence in several ways. First, urologists should be aware of the social and self-concept struggles adolescents may experience, which have the potential to impact their attitudes about medical needs, especially while at school. At the same time, they should use a girl’s desire for independence as a motivator to learn self-care. They should also address bladder and bowel management concerns that could impact social interactions and an adolescent’s perspective of a future romantic relationship. Urologists should work with social workers, PM&R colleagues, and local support groups to promote opportunities for social interactions. A holistic approach to the care of the adolescent may proactively address their concerns and encourage compliance and follow-up.
| Theme | Example Quotations |
| Amplification of differences during puberty | “When they start out when they’re small…far less difference between her and her general education peers. And she had very close friends. And then all of a sudden, they grow up into big, tall, beautiful kids that were going to prom…and she just, then she became in a way their mascot…. She was no longer their peer…no matter well-intentioned these kids are…she can’t be in their same peer group.” “My daughter has mentioned before, even though she has more of an invisible disability, she feels like when people talk to her that they can tell she has a disability. I think self-confidence is hard for anyone and especially if you’re seen as different…” |
| Barriers to Peer Relationships | “I do not feel like she has many friendships…she prefers to be just at home and doesn’t really like…a lot of social interaction…she has limited herself some, just because of like sleepovers…she wears a Foley at night…I think her medical trauma has caused her a lot of anxiety. I think she just feels a lot safer at home.” “She’s…above grade level, and so she doesn’t have classmates…that have disabilities.” |
| Facilitators of Peer Relationships | “We have her involved in what’s called the Miracle League… she loves to be on a team with, you know, kids with disabilities. …She’s right there among everybody and helping them, and they help her” |
| Romantic Relationship Interest | “[my daughter has] a very magnetic personality and her classmates tend to gravitate toward her. And so I said, boys in high school wanna date you. And there’s definitely a wall she has…I think to protect herself. I mean she has to self-cath…but I think the big thing is she has to give herself Enemas…. she might have some stuff come out [at night] and I can see my daughter that whole thought process of what if I have a romantic partner and I have an accident in bed…” |
| Relationship Opportunities | “Some way for them to get together would be nice, but not overloaded with parental oversights.” “I don’t know who she’d date…How do you meet people?” |
| Stability of Parent-Child Relationships | “I think for a while, we butted heads a lot, her trying to assert her independence… the surgery she went through, where I was her sole caretaker…” “In adolescence, she’s been very much the same way that I was, where you’re pushing back…, [she is] still really under our control in a way that a person wouldn’t be normally. But we were always just extremely close, because she was so ill as an infant…I slept with her until she was in fifth grade probably.” |
| Desire for Independence | “She wants to… she does want to move out, and she does want to live on her own” “It was a huge struggle, [cathing] was really hard. But her doctor encouraged her to be independent on that and so- it [was] a struggle in that she did [wanted] to [do]…” “Right now she spends a lot of time talking to Alexa…She can do it independently. And I think that’s why it matters to her.” |
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