Cerebral palsy (CP) is a group of disorders that interferes with movement and posture.1 Because of “non-progressive disturbances in the developing or [fetal] brain,”1 (p572) adults with CP lose functional abilities earlier than persons who are able-bodied. Moreover, the number of adults with CP is growing because of improved survival of low-birth-weight infants2 and increased overall life expectancy.3 Because CP is a lifespan disability, studies of the changes these adults experience, and the meanings of those changes for them, are needed so that pediatric physical therapists and other health professionals can work together to minimize the occurrence and manage the effects of secondary impairments.
Secondary impairments in CP can progress subtly, not appearing until late adolescence or adulthood; whereas some are preventable, others are modifiable through environmental or adaptive measures.4 These secondary conditions can contribute to loss of function and deterioration of activities in daily living5–9 and are therefore important to recognize when providing a lifespan therapy approach.
This study's purpose was to investigate the lived experiences of adults with CP, as they age and undergo changes in their functional abilities. To understand these experiences, qualitative data were obtained and described by using terminology from the International Classification of Functioning, Disability and Health.10 Functioning includes body functions, activities, and participation, whereas disability refers to impairments, activity limitations, or participation restrictions.10 Impairments represent difficulties in body function or structure. Activity involves an individual's performance of a task or action, whereas participation occurs when partaking in a life situation. Activity limitations exist when individuals have difficulty executing tasks whereas participation restrictions occur when they experience problems with involvement in life situations.10
By studying and giving voice to the lived experience of adults getting older with CP, we hope that more understanding and insight into their experiences would be gained as to how they cope with changes in their functional abilities. The strength of this approach was the assumption that the participants' perspectives were fundamental to the understanding of their lived experiences.
A descriptive, phenomenological approach was used to understand the unique, lived experience of adults growing older with CP. Guided by the research question, descriptive phenomenology explores the depth and richness of experiences in a person's life and the meanings of those experiences.11 The research question was as follows: How do adults with CP experience getting older and cope with unanticipated changes in their functional abilities? Through individual interviews, participants were asked to describe their experiences of growing older and changes in their functional abilities.
Study approval was granted by the University of British Columbia (UBC)'s Behavioural Research Ethics Board. Informed consent was obtained before interviewing each participant.
Participants were selected by purposeful and convenience sampling, on the basis of their knowledge of the phenomenon being studied, that is, undergoing age-related changes in functional abilities. The researchers were interested in investigating the coping strategies used to deal with the changes these adults might be experiencing in their functional abilities as they grew older. Therefore, we chose participants who were experiencing age-related changes in their functional abilities to explore the coping strategies they might be utilizing. The first author informed administrative staff of the Cerebral Palsy Association of Alberta, the British Columbia Cerebral Palsy Association, and Vancouver's Jewish Family Service Agency about the study criteria; they then distributed the ethics-approved initial contact letter to candidates who met the criteria.
Selection criteria were adults older than 25 years who (1) had been diagnosed with CP, (2) had not been diagnosed with any other chronic disability or illness but were experiencing changes in their functional abilities as they had gotten older, (3) had at least a high school diploma from a regular curriculum (not special education), and (4) were able to speak English and describe their experiences in interviews with the researcher. We focused on those older than 25 years because the literature5,7,9 suggests that adults with CP often begin to experience changes in their functional abilities by that age. Thirteen individuals responded to the contact letter, but one did not meet the inclusion criteria. Demographic characteristics for the 12 enrolled participants appear in Table 1.
The sample size of 12 participants was consistent with recommendations in a leading qualitative research text suggesting that smaller samples are appropriate for studies involving phenomenology because that type of study is directed toward finding the essence of experiences and requires in-depth, detailed analysis.12 Because the purpose of phenomenology is to understand the meaning of experiences, the sample comprised only people who were growing older with CP rather than enlarging the sample to include individuals who knew the participants.
Data Collection and Analysis
The first author gathered data through in-depth, semistructured interviews that were audiotaped. At the time of the interviews, she was a master's student in rehabilitation sciences at UBC and had completed graduate-level introductory and advanced courses in qualitative research methods; both courses required interviewing assignments, including subsequent data analysis. Open-ended questions asked what it was like to age with CP, how these experiences were understood, what strategies were used to cope with the changes, and what are the meanings of these experiences. A pilot interview was conducted to ensure that the proposed questions elicited appropriate data on the phenomenon being studied, with these data included in the final analyses.
Additional data were then collected from 11 other participants. Each was interviewed twice: the first interview lasted 60 to 90 minutes and the second 45 to 70 minutes. The second interview allowed participants to reflect on their experiences and to clarify, validate, and expand upon information provided in the first interview. Prior to the second interview, data from the first interview were reviewed and questions prepared to clarify or elaborate the earlier data. Audiotaped data were transcribed by an individual with previous experience in transcribing qualitative data, recommended by qualitative research faculty members in the UBC School of Nursing.
Pseudonyms were used within the transcripts. To ensure accuracy, audiotapes were reviewed, compared to the written transcripts, and edited as needed. The research team had access to all transcripts and read selected interviews to ensure quality and aid in the first author's reflexive process; they also provided guidance in subsequent coding and thematic analysis. Data analysis (in which all authors participated) involved identifying meaning units, transforming data into scientific language, and reducing the data further to convey primary themes. After the first author divided the data manually into meaning units using a word processing program, 48 topics emerged. The meaning units were then organized into the language that expressed the values of the scientific discipline being utilized, that is, a psychosocial perspective, by transforming the participants' language of everyday life into the meaning behind the language within the psychosocial perspective in which it was being studied. Subsequent to input from the research team, the 48 meaning units were organized into clusters of 5 themes that appeared to reflect the data. After further analysis and discussion, the themes were reduced to 3, one of which is described in this article.
Respondent validation is a process whereby the researcher returns to the participants with a summary of the data analyses to confirm whether the analyses reflect their experiences.13 Respondent validation was carried out following the data analysis.
Role and Impressions of the First Author
Qualitative researchers are interested in how people make sense of events or situations that affect their lives.14 In descriptive phenomenology, the researcher tries to understand the meanings people create around these situations, to understand participants from their own “point of view,” and to interfere minimally with that point of view. As active participants in the qualitative research process, the researchers situate themselves within the problem formulated.15
Because the interviewer/first author is a middle-aged woman with CP, the questions originated from some of her own experiences. Using a phenomenological approach, her critical reflections increased awareness of her own assumptions so that they could be suspended or bracketed to hear the participants' worldviews. Thus, her experience of aging with CP was not imposed on others but was used to build rapport and understand the complexities of the participants' perspectives and experiences.
On the basis of this reflexive process, the interviewer observed that all participants desired acceptance as persons in their own right, not defined by their disability. She empathized with how 1 participant explained that living with CP shapes and forms who we are but that our own personhood goes beyond having CP.
The interviewer's experience of rehabilitation therapies as a child could not help but influence her view of rehabilitation therapies. One of the participants expressed her disregard for all types of therapy, believing that “all the therapy in the world” would not change that fact that a person has CP. After that interview, the interviewer shared in conversation that she believed therapy had made a big difference in her life, recognizing that she was privileged to have had 1 therapist throughout her childhood who treated her like a daughter.
The interviewer's predisposition against ever having to use a wheelchair was changed following her interviews of the participants, realizing that the decision to use a wheelchair could be based on safety needs and could enhance one's independence.
Consistent with phenomenological approaches, the interviewer's experiences of aging with CP influenced data collection and interpretation. She realized that she had been unable to make changes until aware of what needed to be changed; she then had to accept the needed changes before taking necessary actions. Part of her motivation as the primary researcher was to become more aware of the conditions that adults with CP experience while growing older. Rather than biasing the data, the interviewer (an “insider”) used her own experience and knowledge to enhance data collection and analysis.
A theme that emerged from the interviews and data analysis was described as Awareness, Acceptance, and Action.
In growing older with CP, participants were aware that their bodies were deteriorating quicker than those of their able-bodied peers. One described feeling like a 65-year-old, although only 37. Another described her balance as “unpredictable.” Because balance is linked to stability, feeling stable means feeling secure or safe. Deteriorating balance abilities undermined the participants' sense of security or safety.
Many participants reported experiencing fatigue.
I wake up in the morning feeling really, really good. I feel lots of energy and then, by the time noon hour comes along, I feel a loss of energy. Not exactly sure how that happens but it ... even though I haven't really done anything, it seems to happen .... I can't do anything. I can't do the things that I normally do. I have to basically call it quits, whatever I'm doing, and go have a nap. (Alan)
To function in their daily lives, participants were aware of the need for more rest, for example, a daytime nap or at least 8 hours of sleep at night. They spoke of having to manage their lives differently than when they were younger because of fatigue.
Experiences of pain, stiffness, and fatigue also made participants aware of their need for physiotherapy, although many complained about lack of funded services as adults: “They pretty much let you go with pretty much no resources ... once I was 18 ... they cut you loose and said ‘we can't do anything for you now, and you're on your own,' and that was it...” (Barbara).
Most participants believed they would maintain their abilities longer with greater access to therapies: “I still think right now if I went back to therapy I could still learn a lot and improve on different things” (Gary). What was especially bothersome to the participants was lack of knowledge among medical professionals about aging with CP. Participants struggled to gain information about their concerns, explaining that often their family doctor did not seem to know anything about CP.
There's very limited information; there's not too many people I can turn to for advice. The medical personnel don't seem to know whether they're coming or going half the time-–they don't know enough. They can't tell you what to expect. The medical expertise drops when you're 19. Like there doesn't seem to be anyone that carries through from childhood to beyond ... (Sara)
Participants expressed fear and frustration, stating that information about what to expect when growing older with CP would be helpful: “And the doctors don't have a clue so I guess as far as aging with CP, it would help if somebody could say this is aging with CP and this is what's not ...” (Barbara). Individuals' experiences in seeking information about aging with CP made them aware of the lack of such knowledge among medical professionals.
Five participants shared how their increased physical limitations led to isolation and loneliness, often resulting in bouts of depression, with 4 of them aware of the need for professional counseling. The sole participant who expressed strong opinions against counseling explained that her loneliness and depression were due to living with a disability that all the “counseling in the world” would not change.
Participants viewed themselves as minorities in an able-bodied world, often perceived as helpless. They were disturbed when others were more interested in their disability than their personhood and wished that people would see their abilities instead.
Acceptance and Action
Acceptance and action followed awareness. Participants described coming to a level of acceptance that hastened actions toward improving their quality of life. Some altered their lifestyles, others decided to use mobility devices, others sought out various therapies, whereas some changed their outlook toward their challenges.
Aware that their physical deterioration often adversely affected their balance, participants developed strategies to prevent falling and address personal safety, for example, using a wheelchair or scooter: “... I made the decision that because I'm on my own 23 hours a day, it's safer for me to be using the chair more often” (Nina). Another stated that her scooter is faster and saves her energy. Conversely, others sought ways to remain ambulatory because wheelchairs or scooters were viewed as compromising their independence, whereas those who accepted mobility devices saw them as providing greater independence. All participants accepted their need to address difficulties with their balance and mobility as they grew older with CP.
For those requiring hired caregivers, assessment of their functional limitations was necessary to determine the level of care needed. However, each struggled to attain adequate funds for the number of hours they felt they needed. One commented that the problem resided in whether assessments were viewed within a medical model versus a participation model. Most participants' self-assessments included taking part in activities that interested them (participation model), whereas most social service agencies' assessments considered only their basic health needs (medical model).
Fortunately, there is a provincial social service program that enabled some participatory choice on the part of those 5 individuals who needed hired caregivers for assistance, that is, choosing to go through an agency that sets up the allotted hours and provides the staff or choosing to receive a dollar allotment for care and then interviewing and selecting caregivers of their choice. Four of the five chose to receive the dollar allotment and select their own caregivers. Ted explained the advantage of this program for people with disabilities.
So ... yeah, this program is ... to me it's a model program through this country; it is making a difference for people to be able to go to work, to be able to go to school, be involved in recreational activities and be able to socialize ... you know. It really is a program that is dynamite ... it just needs to be tweaked a bit to be more ... the assessment of hours need to be based on participation, not on the medical model because that's really what the assessment process part is based on.
In accepting increasing fatigue, participants sought actions to manage their lives. Realizing their needs for more rest, they altered their activities: “When one gets older, one learns to accept a lot of things. Then that makes it easier and your energy is used toward more useful and practical things” (Sheila).
Increasing pain and stiffness led participants to take actions. Exercise and diet were strategies to manage age-related changes. Realizing that increased body weight adversely affected his abilities, one participant changed his diet and incorporated a more rigorous stretching regime: “I have to do what I have to do. And I feel healthier for it ... I either stretch or I get too stiff” (Tom). He commented that some of the changes were part of normal aging but, for people with CP, the magnitude is often greater.
“I don't contribute that (stiffness) necessarily to having cerebral palsy; I contribute the magnitude of the stiffness is a lot more significant for me as it would be for someone else” (Tom).
Some sought alternative therapies, such as massage, hypnosis, nutritional counseling, and chiropractic, whereas others paid for services such as physiotherapy and exercise coaches: “[with] massages and a little bit of therapy sessions, I should be able to take my disability and even take it to the next level where probably ... I'll be walking a lot better and be able to move a lot better” (Gary). Diet, exercise, and alternative therapies were helpful actions in dealing with secondary impairments.
Participants came to understand that their disability was not separate from their personhood, while recognizing that they were more than their disability: “I tell people when people are born with cerebral palsy, they're born completely normal [for them] because they're never going to be able to change it” (Gary). As they grew older with CP, many were better able to accept their condition, providing them with a more positive outlook.
To conduct respondent validation (member checking), the first author/interviewer contacted all 12 participants, 7 of whom responded. All who responded identified with the theme Awareness, Acceptance, and Action and this strengthens the credibility of the findings. In particular, Tom and Alan identified with the process of first needing to become aware and then having to accept before they were able to take necessary actions.
Awareness, Acceptance, and Action describes strategies used by participants to cope with daily life. Through awareness, many coped by acknowledging the difficulties they were experiencing and then assessing their situations and available resources. Acceptance and action involved strategies that included both attitudinal and environmental changes. As participants became more accepting of themselves, they were better able to make appropriate decisions.
Most had not anticipated these changes at such young ages, wishing that they had been informed sooner to take preventive measures. As to their health and well-being as they aged, all were proactive: altering their lifestyles, seeking out alternative therapies or counseling, changing their diets, and exercising.
Participants in this study experienced many of the age-related, biomedical conditions reported by others, for example, increased pain with increasing age.16–22 As noted by Schwartz et al,18 stress/depression, overexertion, and weather changes exacerbated pain, whereas exercising, stretching, resting, massage, and staying active relieved pain. Similar strategies were used by participants in our study.
Jahnsen et al16 reported that adults with CP who were experiencing pain altered their lifestyle by reducing work hours, beginning to use a wheelchair or other compensatory device, or applying for more home services—findings mirrored in our results. Although such changes may minimize pain, those authors16 and others8,22 have suggested that these measures can be perceived as a “defeat,” creating psychological distress because of activity and participation restrictions. Although some participants in our study described psychological adjustments when having to alter their lifestyle, use mobility devices, or request more help, most accepted the needed changes.
In the past, a lifespan perspective has been missing when planning programs for persons with CP.8,16,22 Participants in our study believed that preventive measures and ongoing therapies would improve or halt conditions contributing to their declining abilities. As for support from social and medical services, the participants felt “forgotten” after turning the age of 18 years.
Influence of the Interview Findings on the First Author's Own Experiences
As a woman growing older with CP, the first author/interviewer identified with much of the data and understood their meanings perhaps differently than would a researcher without CP. She identified Acceptance, Awareness, and Action as a process that she uses in her own life, realizing that she is unable to make necessary changes until aware of what needs to be changed. She then needs to accept what needs to change before taking the necessary actions.
Although it was impossible to avoid having her own experiences of aging with CP enter into the research process, the first author made every effort to use her experience and knowledge about the topic to enhance both data collection and analysis rather than influence the data. To increase the credibility of the findings, the research team monitored the first author's reflexive process.
Our findings are specific to the participants interviewed and do not reflect the experiences of all adults growing older with CP. Furthermore, our inclusion criteria limited the sample to community-dwelling, high school graduates, aged 25 years or older.
Although phenomenological methods have merit in describing the experiences of aging with CP, this approach has limitations. We focused on just 12 individuals whose experiences were interpreted primarily by the first author (whose own experiences as an adult aging with CP likely influenced the study findings). Although the findings were reviewed by other authors and their credibility checked with the participants, the analysis was conducted primarily by the first author. Nonetheless, the findings provide important insights for health care providers wishing to provide optimal care for adults aging with CP.
Implications for Physical Therapists
Programs promoting lifetime fitness (eg, exercise, nutrition, weight control, stress management, and energy conservation) are needed so that individuals with CP do not compromise their abilities. One energy conservation strategy mentioned by our study participants was prioritizing activities to partake in those they most enjoy. Programs to manage chronic pain are needed as well. Continual monitoring of changes in strength and range of motion and assessment of fitness and appropriate use of equipment are essential because deterioration can be slow but notable over time.23,24
All health care providers should be aware of the unique needs of adults with CP. Physical therapists are often in the best position to advocate for accessibility in health care and encourage prevention and routine examination for clients with CP.24
Pediatric physical therapists and social service providers should be cognizant of needs during times of transition, for example, moving from child-centered to adult-oriented health care.25,26 Liptak26 suggests that transition planning include assessment of the individual, family, and community—beginning in adolescence. Participants in our study supported plans that include care coordination, ensuring availability of care financially, and having capable, adult-centered health care providers to ensure successful transition from adolescence to adulthood.26
In taking responsibility for their own health, adults with CP need to know what their physician and other health care providers will do for them. One participant suggested that family physicians be interviewed to learn what they know about CP, their connections within the medical community (ie, specialists, rehabilitation therapists), and where they have hospital privileges. Participants suggested also that adults with CP ascertain whether a physician is equipped to handle special needs or adaptations required for care and is willing to devote extra time needed for examinations.
Because pediatric physical therapists often work closely with children and adolescents with CP (and their families), they are well positioned to anticipate what secondary impairments may lie ahead during adulthood. As Campbell suggested more than a decade ago, pediatric therapists should assist their young clients to take responsibility for their own health, to learn to conserve energy so they can participate in those life activities they most enjoy, and to enhance their physical fitness with the goal of minimizing secondary impairments in later life,27 as echoed by the participants in our study.
Implications for Evidence-Based Practice
Our findings also have important implications for therapists wishing to practice in an evidence-based manner. According to Sackett et al,28 evidence-based medicine is defined as the integration of the best available research evidence with clinical expertise and patient values. As Straus et al29 noted, the patient's individual values and preferences must be integrated with the research evidence to foster informed shared decision-making between the health care provider and the client. Unfortunately, this component of evidence-based practice is often missing within our own literature.30
By listening to the voices and honoring the values of consumers in qualitative studies such as ours,31 pediatric physical therapists can become champions in fostering evidence-based practice within our profession.
More research is needed on what adults with CP should expect as they grow older, including preventive measures to minimize the effects of secondary impairments. Studies are needed to determine how to reduce wear on joints and muscles from overuse and spasticity, how to promote relaxation, minimize stress, and conserve energy.27
Although participants found alternative therapies helpful, limited evidence exists regarding their efficacy.32–34 Individuals with CP should not be discouraged from exploring alternative therapies but further scientific inquiry is needed about their benefits and side effects.32–34 Factors contributing to isolation and depression, such as premature losses in employment, health, function, mobility, or independent living, should be systematically investigated.
As participants experienced and were able to accept changes in their physical abilities, they made decisions to address the adverse effects these changes were creating. The participants accepted the need to address safety issues and their increased need for support. Some participants took actions toward increased use of mobility devices, whereas others moved toward more support of family and friends and others increased their use of hired caregivers. Alternative therapies, exercise programs, diets, and changes in levels of activities were some of the actions used by the interviewees in addressing changes in their physical abilities. The participants' decisions on how to view growing older with CP also seemed to make a significant difference in their approach to the changes they were experiencing. The theme Awareness, Acceptance, and Action illuminated some of the coping strategies used by adults growing older with CP.