Independent walking is a typical goal of rehabilitation in children with cerebral palsy. But that expectation can lead to frustration in parents and children, many of whom feel that they are more mobile and more functional when using assistive devices.
By Barbara E. Gibson, BMR(PT), MSc, PhD
The achievement of independent walking is a major focus of rehabilitation for children with cerebral palsy (CP). Even when mobility could be achieved more easily through the use of assistive technologies such as wheelchairs, independent walking is typically pursued as a major rehabilitation goal and other forms of mobility are often discouraged. Despite these efforts, it is well established that many children with CP do not achieve or maintain functional walking, and will increasingly rely on wheelchairs for some or all of their mobility needs as they age.1-3
The reasons why walking is a highly prioritized goal for children with CP remain underexplored. There is literature to support the physiological benefits, including maintenance of muscle length, bone density, and cardiovascular fitness.4-6 However walking and “standing on your own two feet” also symbolize largely taken-for-granted virtues—rectitude, dignity, autonomy—that have not been explored. Moreover, the perspectives and experiences of parents and children regarding walking and walking therapies remain largely absent from professional debates. We conducted a study to examine how beliefs about the value of walking inform the therapy priorities and perceptions of “success” in children with CP and their parents.7
The study utilized a qualitative design based in a critical social science approach. Critical approaches focus on individuals’ experiences and behaviors within the context of the larger sociopolitical themes that shape people’s values and perspectives.8 The methods and analytical techniques used in the study have been described in detail elsewhere.9
Briefly, face-to-face individual qualitative interviews were conducted with six children with CP and six parents using a semistructured interview guide. Children were aged between 9 and 18 years; three were in Gross Motor Function Classification System (GMFCS)10 level III and three were in level IV. A range of child-centered interviewing methods were adapted according to children’s ages, abilities, and levels of engagement.11 Examples included captioning of pictures, sentence completion exercises, role playing with puppets, and story creation with pictures. All interviews were audio-recorded digitally, transcribed, and imported into the NVivo 8.0 qualitative software program. Analysis involved multiple stages of coding, memoing, and team analytical meetings. Analyses combined inductive and deductive explorations, consistent with the study’s conceptual framework.12,13
The results are summarized below and reported in more detail elsewhere.7,9 All names are pseudonyms and the interviewer is represented as “I.”
The parents: Do something/try anything
All parents described walking as a primary long-term goal that was pursued regardless of whether other mobility options such as a wheelchair were part of their children’s lives. Their accounts revealed a set of related concepts, including: maintaining hope, staying vigilant, and trying any intervention that was financially and practically feasible–even therapies that they labeled as “quackery.” Parents portrayed themselves as active, i.e., as doing something, which was linked with expressions of being a “good” parent who does not give up hope.
EMILY’S MOM: Parents are all searching for a cure. You’re all hopeful that there’s something that’s going to cure it. And nobody ever wants to feel that they didn’t do as much as they could for their kid, right?
While all parents were committed to doing something, this did not mean that they adopted an “anything goes” approach. Parents often actively weighed the benefits and costs (financial and personal) once their child had commenced a therapy. Such trade-offs had their limits but all parents told stories of anxiety and doubt related to their decisions to forgo, stop, or decrease the intensity of an intervention.
The accounts suggested the nature and intensity of walking interventions and parents’ vigilance diminished over time for a variety of reasons. Parents conveyed deep fatigue resulting from systemic barriers encountered in schools, health care, and government funding. Schools, for example, were cited as responsible for reducing a child’s independent walking by imposing requirements of wheelchair or walker use for reasons of safety and efficiency.
One mother felt that she had “flunked” as a parent by not pushing harder for more school-based therapy:
DAVID’S MOM: He wasn’t getting therapy for three years. That’s where I flunked. Between here and school he wasn’t getting nothing, so I got him back in the program so he could get his regular therapy. Then they got him the walker, said that the walker would do him good. And now he relies on that walker too much and his endurance has really slowed down.
Thus, rather than making deliberate supported choices to reduce walking interventions, parents often seemed to have been worn down over time. Their own fatigue associated with diligently pursuing all options, combined with the forces that made these efforts difficult to maintain, eventually resulted in a kind of rationalized resignation.
The children: Normality and identity
All children in some way discussed walking as an end in itself, i.e., the purpose of walking was to improve walking ability. Participants struggled to articulate reasons that exercise or walking were good things to do. They sometimes included specific outcomes, such as improving strength or endurance, but walking as a means for mobility was rarely volunteered. Instead they most frequently suggested that it was “good for me” even when discussing its negative aspects.
Pain and fear associated with different walking interventions were recurring themes:
EMILY (AGE 13): My dad kind of, well not really forces me to go, but he kind of wants me to go, to benefit my legs.
I: What are some of the reasons why you might not want to go?
EMILY: Because it hurts when I stretch sometimes. And when I walk for too long, it hurts my ankles. And when I have my AFOs on for too long, it hurts my legs…I can’t really walk. When somebody leaves me alone for too long, and I’m not in my wheelchair, I’m kind of scared I’m going to fall…I want to be in my wheelchair.
Children weighed complex factors related to energy expenditure, the activity, the environment, and their personal preferences when making mobility choices. For example, Lina discussed why crawling was at times a useful option for her:
LINA (AGE 12): In peoples’ houses I crawl…then I don’t have to bring my walker or my canes. And it’s kind of faster if I’m around big obstacles and small obstacles at the same time.
Emily revealed her wheelchair preferences through a role- playing exercise with the interviewer:
I: One day her teacher said, ‘Ally, what do you think about using your wheelchair a little bit more often at school?’ What do you think Ally’s going to say to her teacher?
EMILY: I want to use it more.
I: And her teacher said, ‘Well, when would it be good to use it?’
EMILY: At recess.
I: Why do you think recess would be a good time?
EMILY: Cause she can move around and catch up with her friends and stuff.
I: How do you think Ally’s going to feel about that?
EMILY: Happy because then she doesn’t have to be so tired anymore.
Children’s accounts provided insight into their understandings of the various ways they experienced their bodies and abilities through the stigmatizing behaviours of others, including teasing and an emerging awareness of social marginalization. For example, Lina described the importance of being able to walk and her desire to be the same as other children:
LINA: I don’t want to be, like, a person that doesn’t walk at all.
I: Is it important to try to be like everybody else when you can?
LINA: Yeah, it’s pretty important to me.
Resistance to negative views of disability was apparent in children’s discussions of their assistive devices as expressions of self. For example, David described how he would redesign and personalize his walker in typically masculine ways:
David (age 12): One thing it could use though is a different color, more style, maybe some hard core pictures, like a car, or a motorbike, maybe fire.
The children thus could be seen as doing the work of transforming a marker of disability and stigma into positive sources of social capital and identity. Being “like everybody else” remained important but was addressed in creative ways.
Finally, children held conflicting and ambivalent notions about the value of walking. This was most powerfully expressed by Stephen, the oldest youth in the study. In the course of his interview, he expressed both the notion that the inability to walk was not a major issue for him (I’m used to not walking. I don’t pity myself for not walking) and feelings of despair:
Stephen (age 18): I’ve come to the conclusion that my inability to walk makes me, at various levels, a parasite on society. I’m rather upset about my inability to walk.
This study contributes to an emerging body of critical research investigating how dominant social values shape parents’ and children’s behaviors, values, and choices.14-20 The results help illuminate the various hope-promoting strategies used by parents and how these map onto their beliefs about their parental roles. Parents were committed to doing everything feasible to promote their children’s walking, but were also continually plagued by doubts about the wisdom of doing so. Furthermore, our results begin to illuminate the many ways children are affected by normative ideas about walking as a moral good that must be pursued diligently. As others have commented, by internalizing these ideas at an early age, children may struggle to develop positive self and body images and may experience a sense of failure if they cannot achieve or maintain functional walking.21,22
The results suggest a number of possible avenues for further reflection regarding rehabilitation programs and walking interventions. We are not suggesting that walking therapies are not valuable or that they should be discontinued. Walking has a functional and symbolic value in contemporary societies and is a clear advantage in a variety of areas, from the job market to socialization. Furthermore, walking in children with CP is not a dichotomous outcome; a child may walk in certain situations and use wheeled mobility in others.
What this research supports, however, is critical reflection on walking interventions, and efforts to make values and beliefs part of the rehabilitation conversation at several levels. Children and parents may benefit from opportunities to reflect on, understand, and cope with their choices and values that may be shifting. Simply put, parents need to have permission to stop. They need to be supported that they “did enough” and that it is acceptable to let their child crawl or use a wheelchair to achieve functional mobility goals. Bottos21 has similarly commented that the emphasis on motor “recovery” needs to be avoided because it can set up children and parents for unachievable expectations and feelings of failure. Helping families maintain hope is important, but clinicians also have the responsibility to provide an evidence-based prognosis, help families live well with a child’s impairments, and focus on participation.21,23,24
Creating space for children to talk about these issues and share their experiences, fears, and assumptions is also important. Children’s values and beliefs are forming at the same time that their parents’ values and goals for their children may be shifting. Research suggests that adults transmit dominant understandings of disability to children, and multiple medical, educational, and social encounters reinforce the internalization of social differences.15,25-28 Although negative views of disability and difference may be imposed on disabled children, they may also resist these ideas, depending on their own particular circumstances and their exposure to counter-narratives.26,29,30 A challenge of rehabilitation is to determine how best to assist children in maintaining a positive disability identity while pursuing achievable therapeutic goals.
Barbara E. Gibson, BMR(PT), MSc, PhD, is an associate professor in the Department of Physical Therapy at the University of Toronto and senior scientist at the Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital in Toronto, Ontario, Canada.
Acknowledgements: Portions of this article have been previously published in reference 7.
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