The boy who defied odds after a 1999 shooting that left his mother dead and left him with cerebral palsy and brain damage is now a happy, adjusted adult who loves to smile and …
Just like anyone else, people with cerebral palsy will age. Yet, their disorder comes with unique conditions as they grow older, as founded in a recent questionnaire, which has provided physicians with many answers that will help them treat older patients with cerebral palsy more efficiently.
The questionnaire, entitled, “Aging with Cerebral Palsy; What Are the Health Experiences of Adults With Cerebral Palsy? A Qualitative Study,” asked various adults with cerebral palsy their experiences while growing older with the disorder. One of the major factors that influence people with cerebral palsy today is that they are living much longer than ever before, and with age, of course, comes additional ailments and issues.
A total of 14 men and 14 women with cerebral palsy participated in the study. The participants ranged in ages from their 30s through their 70s, and were asked to list their coping strategies as they grow older, while specifically thinking about aging and cerebral palsy. They were also asked to list their healthcare experiences, and in their opinion, what healthcare providers could do to make their medical visits more beneficial.
The questions were conducted by a team of medical professionals, including a nurse, a pediatric orthopedic surgeon, and physiotherapists. The medical team covered five specific themes while interviewing the participants:
- Change acceptance
- Identity exploration
- Interacting with healthcare professionals
- The future, and
- Taking charge of medical help
The majority of participants readily agreed that their conditions result in an accelerated aging process when compared to non-disable adults. Most participants also agreed that since they face more aging difficulties than non-disabled adults, they were more likely to participate in activities that benefit them, such as diet changes, a fitness regime, and various other coping strategies.
“I didn’t want a walking aid. I wanted to be independent without the use of aids but now —admittedly I’m a bit self-conscious. Yeah. Oh well, I just use it because I need it,” said a female participant in her 40s. “[It was hard] because you want to look as ‘normal’ as possible but when you’ve got this walker out in front of you and — but now I just enjoy getting around!”
Most participants admitted that the healthcare aspect of getting older with cerebral palsy could be stressful. A female participant in her 50s said that getting healthcare assistance was much easier if healthcare providers were flexible and related to what she actually needed in her life instead of general assistance.
“I need some, some things done for me but that’s different from ‘I need to be taken care of.’ I don’t need 24-hour care, I don’t need people making decisions for me, I don’t need people putting me on programs where I can go and socialize, because I can go down [to] the [pub] and do that,” she said.
One of the biggest issues, however, is how other people perceive older patients with disabilities. A male participant in his 30s said that deep and authentic friendships are harder to come by as he ages, and most relationships come off as feeling “superficial.”
“Sometimes I notice that I can only have superficial dealings with people other than, you know, my personal family, and that can be frustrating for me. That there’s, that I don’t have deeper friendships or more, you know, more enduring friendships. So that’s where I find it disabling and I feel that it, that it’s something to do with, not my disability but the perceptions and the stigmas around that.”
The good news, however, is that the patients placed great value on people who were willing to learn more about cerebral palsy. According to the authors of the study, a deeper interaction with patients with cerebral palsy, as well as more “responsive strategies” to their healthcare needs, is something that needs to be implemented across the board.
“Increased interactions with health and rehabilitation professionals, as a consequence of these changes, have the potential to impact the person’s healthcare experience either positively or negatively…..Our findings could, and arguably should, inform more responsive strategies for disabled people in health services and, indeed, all health consumers.”
To learn more about the participants and the study, including the research methods used and more, click here for the full study, on BMJ Open.