Fall experiences of ambulatory children and adults with cerebral palsy: a qualitative analysis

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Krach , Kari Pederson , Sandy Callen Tierney , Nathan G. Wandersee , Elizabeth R. Boyer , Cerebral Palsy Research Network doi: https://doi.org/10.1101/2025.03.22.25324449 Marissa Esterley 1 Gillette Children’s - Department of Research , Saint Paul, Minnesota, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Linda E. Krach 1 Gillette Children’s - Department of Research , Saint Paul, Minnesota, USA 2 University of Minnesota - Twin Cities, Department of Rehabilitation Medicine , Minneapolis, Minnesota, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Kari Pederson 1 Gillette Children’s - Department of Research , Saint Paul, Minnesota, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Sandy Callen Tierney 1 Gillette Children’s - Department of Research , Saint Paul, Minnesota, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Nathan G. Wandersee 1 Gillette Children’s - Department of Research , Saint Paul, Minnesota, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Elizabeth R. Boyer 1 Gillette Children’s - Department of Research , Saint Paul, Minnesota, USA 3 University of Minnesota - Twin Cities, Department of Orthopedic Surgery , Minneapolis, Minnesota, USA 4 University of Minnesota - Twin Cities, Rehabilitation Science Graduate Program , Minneapolis, Minnesota, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site For correspondence: lizrboyer{at}gillettechildrens.com Abstract Full Text Info/History Metrics Data/Code Preview PDF ABSTRACT Aim To qualitatively assess causes, adaptations, and psychosocial impact of falls, and solutions for safer environments as shared by persons diagnosed with cerebral palsy (CP). Method Ambulatory adults with CP (n=165) and caregivers of ambulatory children with CP (n=151) responded to four open-ended falls questions. Deductive and inductive content analysis was conducted. Results: Eight themes emerged (psychological, physical, avoid, adapt, people, environment, policy, healthcare). Participants elaborated on fall causes (aging, physical, mental, environmental, and situational), mechanics (most often trips), repercussions (psychological and physical), adaptations, difficulty getting up, and aspirations for themselves and society. Caregivers and adults detailed various adaptations to or deliberate avoidance of high-risk situations (e.g. uneven surfaces, crowds). Specific suggestions for environmental accessibility (e.g. more handrails), societal behavioral responses (give autonomy, be patient), healthcare practice, and policy were made. Interpretation This study offers profound insights into how individuals with CP navigate the challenges of falls and how people and surroundings both positively and negatively affect their fall-related experiences. Many issues identified were multifactorial, requiring multidimensional, non-ableist solutions. Thus, the onus to address these issues is shared. Participants offered simple, but impactful, actions that could be taken immediately to support the creation of safer physical and psychological environments. WHAT THIS PAPER ADDS 1. People should ask if and how to help when someone falls. 2. Falls trigger anxiety, embarrassment, and avoidance, often outweighing physical injuries’ impact. 3. Participation can be enhanced through more inclusive activities and environments. 4. Safe falling strategies should be taught at all ages. 5. Multifaceted solutions include conversations regarding falls with clinicians and addressing policy shortcomings. Ambulatory individuals with cerebral palsy (CP) often experience restricted mobility, increased unsteadiness, and elevated risk and concern for falling. 1 – 3 Falls can cause embarrassment, activity avoidance, and injury. 3 – 8 The negative emotional and behavioral responses may become more prominent in adolescents, 8 though high levels have been reported through middle adulthood. 3 Over half of ambulatory children and adults with CP fall at least once per year, 3 , 6 , 9 , 10 which is two to three times higher than the general older adult population. 11 Consequently, individuals with CP experience the physical and psychological sequelae of falls throughout their lives. However, there is a dearth of literature on the lived experiences related to falls, despite the higher risk of falls. 7 , 12 Understanding CP and falls requires a multidimensional framework that considers the biological, psychological, and societal contributors to disability and health. 13 A small study reflected this by identifying helpful and unhelpful attitudes, practices, and environment modifications that affect participation in the face of fall risk. 8 Avoiding activities and seeking support were common and sometimes beneficial, 5 , 8 but they can lead to isolation, reduced independence, and stigmatization, especially by some healthcare professionals’ limited awareness of CP-specific challenges. 14 Conversely, when healthcare professionals understand their patients’ daily lives, positive outcomes can result. 14 Increasing awareness of the lived experience surrounding falls will inform resource allocation, clinical services, and research. Hence, our study purpose was to describe the experiences of individuals with CP related to falls and their repercussions and how clinicians and society can help mitigate the impact of falls across the lifespan. METHODS The University of Minnesota Institutional Review Board approved this study, which was part of a larger mixed methods falls study. 3 Qualitative findings are reported here. The inclusion criteria were individuals with CP, aged 5-89, Gross Motor Function Classification System (GMFCS) levels I-III, who read English. Acknowledgement of consent was obtained from caregivers for minors (<18 years) and self for adults (≥18 years). Recruitment occurred from January to October 2022 via emails from individuals seen at Gillette Children’s from 2011-2021, social media listings in 2022, and emailed surveys to adults within the Cerebral Palsy Research Network’s Community Registry. REDCap (Research Electronic Data Capture) was used for screening, electronic consent, and survey administration. Caregivers were asked to consult their child, as appropriate. Four optional open-ended falls questions based on the literature 8 and conversations with adults with CP were created: 1) Feel free to share any more information or provide clarifications regarding the above questionnaire on consequences of falling, 2) Describe how you may have adapted to perform certain activities to avoid falls, 3) Provide clarifications regarding the above questionnaire on balance confidence and activity avoidance, and 4) Provide any other comments about balance, trips, or falls, including what clinicians, families, or society can do differently to make physical and social environments safer or decrease your concerns about falls. Data Analysis Child/caregiver and adult responses were analyzed together. We used Framework Method with deductive approaches guided by our research questions and inductive approaches guided by data content analysis. 15 Responses were independently analyzed by two authors (ME, ERB). During familiarization, the textual data were coded, codes were organized into potential themes and subthemes, maintaining alignment with the four open-ended research questions. A working codebook was created, and researchers defined the central themes and subthemes. A thematic framework matrix was created in an electronic spreadsheet where columns represented subthemes, and rows represented participants. Throughout the charting phase, sentences, phrases, and paragraphs of responses were labeled in the framework matrix. People with lived experience (KP, ST, NW) informed the codebook and joined disagreement discussions to help reach consensus. After further review, subthemes were finalized to best represent the original responses. RESULTS The final sample in the larger study included 381 participants, of which 316 provided at least one response to the four optional open-ended questions ( Table 1 ). View this table: View inline View popup Download powerpoint Table 1. Demographics. Across all four questions, two central themes—internal and external—and eight subthemes emerged (internal: mental, physical, avoid, adapt; external: people, environment, policy, healthcare). Participants elaborated on fall causes, mechanics, repercussions, frustrations, and desired changes for themselves and society. Responses to the second question were divided into five additional subthemes related to avoid (public, physical exertion, terrain) and adapt (physical behaviors, mental). Internal themes are discussed first ( Table 2 ) followed by external themes ( Table 3 ). View this table: View inline View popup Table 2. Example quotes from central theme 1, internal, defined as thoughts, actions or characteristics of the individual with CP. View this table: View inline View popup Table 3. Example quotes from central theme 2, external, defined as thoughts, actions or things external to the individual with CP. Psychological Multiple participants identified as “expert fallers,” stating falls are a part of their lives and require acceptance, adaptation, and resilience. Psychological causes of falls reported were mental fatigue, distraction, and overthinking. Most responses centered on psychosocial repercussions, highlighting how perspectives like resilience or despondence can impact participation and quality of life. Participants struggled with embarrassment, anxiety, panic attacks, and insecurity; these affected their balance and were more worrisome than the physical ramifications of falls. A caregiver mentioned their child felt like other children noticed the physical difficulty of some tasks, increasing the child’s fear and insecurity. Others were resilient after falls. Caregivers wanted their child to feel empowered, not embarrassed, when asking for help. Physical Participants described physical impairments contributing to falls, including fatigue, weakness, tight muscles, low tone, poor balance, and age-related changes. Trips caused by foot clearance issues were the predominant cause of falls rather than slips. Some reported being startled, especially in public, as a substantial contributor to falls, prompting them to sometimes avoid public spaces. Children and adults alluded to excitement or nervousness causing muscle tension, which caused falls. Participants suspected comorbidities may also cause falls, like autism, seizures, cerebral/cortical visual impairment (CVI: visual impairment due to damage to visual processing rather than eye structures), blindness, and cervical stenosis. The effects of falls included pain, minor injuries, and major injuries like fractures and concussions. Physical repercussions were reported to change over time, especially difficulty getting up. Avoid Participants described how concern about falling directly affected their participation. Many avoid crowds and public spaces. One participant, in middle adulthood, worried about falling and so avoids high-risk situations since an injury could impede their ability to provide for their family as the primary household earner. Participants avoided uneven, irregular, slick, or unknown terrain. One participant took time off work to avoid walking in wintry conditions. Others discussed taking longer routes to avoid tenuous areas, staying on the perimeter of crowds and near walls for support. Avoidance of sports and physical activity was common for children and adults. Adapt Participants discussed physical and mental adaptations to mitigate fall risk, which were more common than avoidance examples. Physical adaptations included sitting to dress and shower, crawling/scooting, wearing more supportive shoes, strength and balance exercises, and using assistive devices, braces/orthoses, external structures (e.g., furniture, walls), or people for support. Scooting and crawling were reported by children and adults in GMFCS levels II and III. Some described using assistive devices (e.g., walker) to create space around them. Other physical adaptations included using hiking sticks and looking down. Mental adaptations included hypervigilance and planning when going out in public. Participants noted the importance of concentrating on walking and paying attention to surfaces, objects, or crowds that might increase fall risk. Other common themes included anticipation, understanding one’s limitations, and learning when to seek help. People Participants discussed how others helped or harmed their fall experiences. A companion’s presence or assistance for safety during daily activities (e.g., showering, and especially reaching for items on the floor) was reported by many as helpful. Participants discussed frustrations and desires to change others’ reactions and behaviors; strangers can cause a fall or complicate the physical or mental recovery. People often felt crowded by strangers or rushed to move quickly. Asking people to remove shoes upon entering a house was shared as an example of ableism. Many experienced unwanted attention after falls in public. Participants urged strangers witnessing a fall to avoid overreacting, instead, ask if assistance is needed, and then ask how to help. A caregiver desired resources for their child’s school to help educators understand, prevent, and respond to falls. Environment The environment undeniably contributed to falls. Trip hazards included rugs, toys, uneven surfaces (e.g., curbs, stairs), and crowds. Familiarity affected fall risk and concern; stairs in one’s home or school were concerning, but stairs in unfamiliar spaces caused angst. Participants criticized misplaced or inadequate accessibility features. Numerous participants experienced anxiety on downward slopes, especially steeper slopes or those without handrails. Participants offered simple suggestions to improve accessibility, such as clearing public walkways (e.g., shopping aisles, sidewalks). And while some wanted more slopes, others wanted less, instead preferring low incline, deeper stairs. Decorations wrapped around handrails were criticized for obstructing use. One participant discussed the dangers of being outdoors in warmer climates, because falls on the ground can cause burns, especially if it takes longer to regain upright posture. Policy Participants articulated that governmental or institutional policies can impact the incidence and consequences of falls, calling for enforcement of accessibility laws. Many advocated for better accessibility, primarily more ramps, elevators, handrails on each side of stairs and slopes, wider curb cuts, and accessible bathrooms. Participants advocated for more seating areas in schools, public spaces, and healthcare buildings. Residents in wintery areas desired prompt snow and ice removal and salting of walkways. Healthcare A need for improvements within the healthcare system was expressed, emphasizing the importance of effective therapy, treatments, and adaptive equipment across the lifespan. A common request was teaching proper falling techniques, particularly in childhood. Contrarily, others said they had been taught or naturally learned techniques, such as rotating to minimize injury. Adults highlighted lasting benefits of physical therapy on reducing fall risk, especially if it emulates real-world spaces. They desire greater access to lifetime therapy. Some participants felt healthcare professionals provided little or irrelevant fall information, especially as an adult. Lastly, conducting therapy in realistic conditions was advocated for, including simulated curbs and slopes or having therapy in less controlled spaces. Treatments (e.g., botulinum toxin, selective dorsal rhizotomy, braces, orthopedic surgeries) were perceived to help or worsen trip or fall incidence for different participants. Those living in rural spaces expressed the need for better adaptive equipment for rugged terrain. DISCUSSION This study explored the causes and impacts of falls in individuals with cerebral palsy (CP) across the lifespan, highlighting the complex interplay of various factors. Many acknowledged falls as a part of life, shaping how they navigate the world and manage their fall-related concerns through various adaptation or avoidance methods to stay safe while still finding self-fulfillment. However, modifications to health-related behaviors, others’ reactions/behavior, inaccessible environments, healthcare practice, and policy are needed to systematically mitigate fall risk and repercussions. Physical characteristics and comorbidities related to CP cause falls and change with age, based on our findings. Foot clearance is problematic. Many, including balance and fatigue, start to worsen in adulthood and are perceived to also cause functional decline. 4 , 16 – 18 Muscles tensing in response to participants’ emotional state was reported and may represent dystonia, though it is typically underdiagnosed, 19 , 20 but could increase fall risk. Epilepsy and seizures are associated with increased risk of accidents and falls in the general population 21 and was noted here. One participant attributed their child’s fall propensity to CVI. Like dystonia, CVI is underdiagnosed but suspected to affect as many as 70% of this population. 22 Studies are warranted to elucidate the patient characteristics that have the greatest effect on fall risk and determine effective interventions. The direct physical consequences of falls were omnipresent. The youthful ability to “bounce back” after a fall may result in falls becoming insidious and ignored at clinical appointments in adulthood when getting up becomes more challenging. Fractures are common 3 and concerning since adults with CP face mortality and cardiovascular disparities after fractures 23 , 24 and are at a higher risk of prolonged recovery, significantly impacting independence and quality of life. Adults experience fall consequences to a greater degree due to factors such as lower bone density, reduced muscle strength, and accelerated aging. 14 , 25 Individuals yearn for solutions to these problems, 18 and participants recognized that exercise could be one solution. Empirical data on the type and incidence of fall-related injuries, recovery, and prevention interventions is needed. Such information will help justify access to physical therapy or assistive devices to support mobility for individuals with CP, since these factors were cited barriers to more proactive clinical management. Despite the huge implication of fall-related physical injuries, one key finding was the impact of falls on emotional responses and mental health was widespread and may have a greater impact on one’s overall health than physical injuries. For the first time, panic attacks were documented in this population due to falls. Less extreme emotional responses, like worry or anxiety, can manifest as poor balance, 26 as can mental fatigue (from concentrating on the environment and not falling) or increased cognitive load. 27 This, in turn, increases risk of future falls. Some participants were resilient or unbothered by falls, but most participants voiced persistent concerns of anxiety, loss of confidence, loss of independence, and intentional activity avoidance, which aligns with previous studies. 3 – 8 Embarrassment was the most common emotion. Because embarrassment requires one to evaluate themself against a social norm, alleviating it can be achieved by addressing one’s self-evaluation or addressing the social norm. Changing social norms and the acceptance of falls can especially help adolescents and adults who may feel falls are less socially acceptable compared to when they were a child. 5 Collectively, the findings emphasize the critical importance of asking children and adults about the emotional impact of falls and downstream effects on their life. Clinical tools like the Three Key Questions are available. 28 Referring the patient to a mental health professional may sometimes be necessary. Understanding the physical and psychological impacts of falls is crucial, as they can independently or collectively result in activity restriction from a young age, influencing participation in daily life and shaping long-term behaviors, place of residence, and career. 12 , 18 Individuals may decide to refrain from socializing. 5 , 8 This behavior can significantly impact mental health, particularly when paired with avoiding crowds or certain environments because of concern about falling or getting up. Such avoidance could indicate or lead to conditions like agoraphobia or post-traumatic stress symptoms, which are often under-recognized or underdiagnosed in individuals with CP. 29 From a physical health perspective, persistent activity restriction (due to an injury or fear of falling) can reduce fitness and bone health, placing individuals at greater risk of serious injury and sedentary-related health conditions. Activity restriction or decreased participation may also result in cognitive issues, anxiety, and depression. The inevitable effects of aging magnify these factors, creating a vicious cycle of self-perpetuating health challenges. Insights from our study suggest addressing fall causes and the resulting consequences requires a multifaceted approach to create physically and psychologically safer environments. Proposed solutions combine individualized strategies, healthcare support, societal changes, and improved accessibility. Individualized strategies are largely mental—resilience, adaptation, and preplanning. Others have documented similar risk management or adaptations to remain socially active. 5 , 8 Some strategies are learned while others may need to be taught. Our data highlights healthcare and clinical research’s role in developing solutions. Children may believe that they will outgrow falling, but it is a problem for all ages of ambulatory individuals. 3 , 9 Therefore, access to relevant fall-related healthcare services and education across the lifespan is sorely needed. 14 , 12 Safe falling strategies should be taught at all ages; this requires therapist training and access to equipment for their and their patients’ safety. Furthermore, participants suggested that therapy in less controlled or familiar spaces, including crowds and public spaces, would improve generalizability to high-risk fall situations, aligning with prior research emphasizing tailored fall prevention and the desire for healthcare professionals to understand daily challenges in CP care. 5 , 8 , 12 , 14 , 18 Research is warranted to identify the prevalence and burden of falls, who is at greatest risk, and which interventions and supports are most effective for prevention. From a societal perspective, individuals felt that being physically and psychologically safer involves changing the environment and public’s behavior. To enhance participation, society needs to prioritize more inclusive activities and environments, especially at schools during a child’s formative years. Inappropriate or offensive public behavior was an impediment mentioned repeatedly and agrees with previous findings that onlookers affect self-confidence and are a source of concern. 5 Asking how to help and showing greater patience and empathy will solve many problems and reinforce individual autonomy. Our findings suggest that addressing the shortcomings of public accessibility and policy need to be part of the multifaceted solution. Misplaced or inaccessible features were common, leading people to feel unsafe and restrict community engagement. 30 Furthermore, unsafe or inaccessible environments can lead to absenteeism or individuals being forced out of work, resulting in significant economic and social impacts. 12 While there were some conflicting perspectives for design specifics (e.g., more slopes vs. more low incline stairs), it was clear public accessibility needs to be enhanced. This can be achieved by including those with disabilities in the design of public spaces and a commitment from businesses to exceed the minimum accessibility requirements. Significant fear or anxiety around downslopes was highlighted here and elsewhere. 5 Designing a shallower pitch with bilateral handrails will ensure the space is wheelchair accessible and safer for assistive device users. Standards or laws are only as effective as their enforcement; greater enforcement of disability policies, regulations, and laws are merited. Collectively, all these supportive actions foster a safe environment, mitigate the psychosocial distress of falls, and encourage participation rather than avoidance. 5 , 8 Limitations Despite the novelty and strengths of this study, limitations remain. Participants may not represent the broader population as they were predominantly from a US Midwest hospital, ambulatory, able to participate online, their own legal decision-makers, maximum age of 76, and part of a larger fall study. Outspokenness or memorable experience are likely overrepresented. Additionally, proxy-reports from caregivers may inadequately represent their child’s experience. Prospective studies could address potential recall bias. In conclusion, this study provides an important contribution on the holistic causes of falls and how children/their caregivers and adults with CP experience falls’ immediate and lasting physical and psychosocial effects. These findings, coupled with quantitative studies, can inform a comprehensive fall risk stratification and assessment based on an individual’s characteristics and behavior, environment, and society’s responses. Mitigating falls and their negative sequelae will truly take a village. Data Availability All data produced in the present study are available upon reasonable request to the authors. Acknowledgments First, we appreciate all participants who made this study possible. We would like to thank Rhonda Cady and Meghan Munger for their mentorship with the qualitative analysis. Our appreciation also extends to the CPRN for their support in participant recruitment. We gratefully acknowledge the Endowed Fund for Cerebral Palsy Treatment at Gillette Children’s for their financial support. REFERENCES ↵ Boyer ER , Palmer M , Walt K , Georgiadis AG , Stout JL . Validation of the Gait Outcomes Assessment List questionnaire and caregiver priorities for individuals with cerebral palsy . 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