Ageing with cerebral palsy; what are the health experiences of adults with cerebral palsy? A qualitative study

Abstract

ObjectiveTo enhance understanding of the experiences of ageing with cerebral palsy (CP) in adulthood with a particular focus on experiences with health services.DesignA qualitative descriptive methodology was applied to capture adults' views of ageing with CP and related interactions with health services. Semistructured interviews were undertaken with data systematically coded and interpreted by grouping information into categories. Themes that encompassed the categories were identified through thematic analysis.SettingAll healthcare settings.Participants28 adults (14 women) with CP, aged 37–70 years.Results5 themes covered the breadth of participants' experiences: (1) acceptance of change; (2) exploring identity: cerebral palsy as only one part of self; (3) taking charge of help; (4) rethinking the future and (5) interacting with health professionals. Being seen and being heard were the features described in positive healthcare interactions. Participants also valued health professionals who reflected on who holds the knowledge?; demonstrated a willingness to learn and respected participants' knowledge and experience.ConclusionsOur findings could, and arguably should, inform more responsive strategies for disabled people in health services and, indeed, all health consumers. 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 recognising the person's own expertise, may achieve three things: a more contextualised healthcare intervention; a better healthcare experience for the person with CP and positive impact on the person's sense of autonomy and identity by recognising their expertise. Future research should identify whether this approach improves the healthcare experience for adults living with CP.

Self perceived and actual physical functional abilities in adults with cerebral palsy

“…Furthermore, some of the participants were also concerned regarding the deterioration in physical functional abilities in adulthood. Key themes identified within this study, self-management and identity were similar to findings of Mudge et al (2016) research, involving twenty eight adults with cerebral palsy in New Zealand. Mudge el al.…”

A Mindfulness-Based Stress Reduction Program via Group Video Conferencing for Adults With Cerebral Palsy – A Pilot Study

“…All participants had baseline symptoms of either pain, emotional distress or decreased quality of life, or a combination of these, and half the group had clinically significant fatigue, which is consistent with the known health challenges in adults with CP (10,(57)(58)(59). The fact that all participants had a high total stress level highlights that adults with CP experience strain on their coping abilities and adjustments (9,57).…”

Adults with cerebral palsy: findings from a population‐based register

“…Data in the current study were recorded when the original cohort was aged 4 to 8 years, but at least 25% of adults with CP will experience a decline in mobility . Adults with CP describe accelerated changes in their bodies and increased fatigue with aging . They report that acceptance and management of these changes is required, by altering activities, the environment, equipment use, and social and work commitments .…”

“…Adults with CP describe accelerated changes in their bodies and increased fatigue with aging . They report that acceptance and management of these changes is required, by altering activities, the environment, equipment use, and social and work commitments . In addition to registers providing a ‘snapshot’ of cohorts of children with confirmed CP in early childhood, they offer an opportunity to determine an accurate clinical description of the population of adults surviving with CP.…”