Cerebral Palsy Patients Provide Rare Insight into Aging with Their Disease

Understanding how people with cerebral palsy (CP) experience aging can provide useful information about the disease to doctors and improve health and social care to these patients, according to a new study from researchers in New Zealand.

The study, “Ageing With Cerebral Palsy; What Are The Health Experiences Of Adults With Cerebral Palsy? A Qualitative Study,” published in the journal BMJ Open, reported on the experiences of adult CP patients.

People live longer than they used to, including adults with cerebral palsy. But in doing so, these adult patients are likely to acquire impairments and illnesses associated with older people at a much faster rate than healthy people and so have a greater need for health services as they age.

Researchers asked 28 adults with CP (split evenly between women and men) who were from 37 to 70 years old to describe their experiences as they get older in the context of CP, and to explain the strategies they use to age positively.

The team also explored the patients’ experiences in healthcare encounters, and asked for their opinions on how these services could be improved.

Interviews were carried out in person by a research team composed of physiotherapists, a nurse, and a pediatric orthopedic surgeon, and covered five themes: acceptance of change; exploring their identity, with CP as only one part; taking charge of help; rethinking the future; and interacting with health professionals.

Acceptance of change: Many participants were aware that compared to adults without a disability or impairment, they were experiencing accelerated changes as they got older. This acceptance, although difficult, was liberating for many of these patients, who then became more motivated to participate in several activities. Acceptance of change was identified as a necessary step for positive responses to changes with aging through lifestyle modifications, maintaining fitness, and using other coping strategies.

“And I think that it was more of a pride thing. 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,” Maria, a CP patient in her 40s, said in the interview. “[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!”

Exploring their identity as CP patients: Many study participants admitted that their disease prompted reflection on how they saw themselves and how they were perceived by other people. For example, social attitudes and assumptions on disability prevented some patients from feeling accepted as “a whole self.”

“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,” said Neal, in his 30s. “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.

Taking charge of help: Many participants experienced feelings of stress between requesting and receiving help, but it was easier to receive help if the assistance was flexible and related to participants’ needs.

“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,” said Laura, who is in her 50s.

Rethinking the future: This theme involved considering the possible or probable physical changes associated with cerebral palsy and the impact these might have on long-term goals and aspirations. Some patients expressed fear in losing all independence or social engagement.

Interacting with health professionals: Participants valued those who demonstrated a willingness to learn more about CP and who respected their knowledge and experience as patients.

“Our findings could, and arguably should, inform more responsive strategies for disabled people in health services and, indeed, all health consumers,” the authors wrote. “Our study supports other findings that impairments related to CP change and, for many, severity of disabling impact increases with age.

“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.”

“A ‘listening health professional’ may bridge their knowledge gap and, in recognizing the person’s own expertise, may achieve three things: a more contextualized healthcare intervention; a better healthcare experience for the person with CP, and positive impact on the person’s sense of autonomy and identity by recognizing their expertise,” the authors wrote. “Future research should identify whether this approach improves the healthcare experience for adults living with CP.”