Functional Capacity and Self-Esteem of People With Cerebral Palsy

 
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Functional Capacity and Self-Esteem of People With
       Cerebral Palsy

                                                                Sandra Martina Espı́n-Tello, Heather Olivia Dickinson,
                                                                Manuel Bueno-Lozano, Marı́a Teresa Jiménez-Bernadó,
                                                                Ana Luisa Caballero-Navarro

                                                                OBJECTIVE. We assessed whether functional capacity predicts self-esteem in people with cerebral palsy (CP).
                                                                METHOD. We conducted a cross-sectional observational study of 108 people with CP, ages 16–65 yr, who
                                                                were residents of Spain. Self-esteem was captured using the Rosenberg Self-Esteem Scale (RSES), and
                                                                functional capacity using the Barthel Index (BI). Sociodemographic characteristics were recorded. The
                                                                relationship between the RSES score and the BI score was analyzed using linear regression.
                                                                RESULTS. RSES scores increased significantly as BI scores increased (regression coefficient 5 0.047, 95%
                                                                confidence interval [0.017, 0.078], p 5 .003). People with a higher level of education, active employment, and
                                                                independent living arrangements tended to have better functional capacity and higher self-esteem.
                                                                CONCLUSION. Greater functional capacity predicted higher self-esteem; this effect is probably partly
                                                                mediated by education, employment, and living arrangements.

                                                                Espı́n-Tello, S. M., Dickinson, H. O., Bueno-Lozano, M., Jiménez-Bernadó, M. T., & Caballero-Navarro, A. L. (2018).
                                                                       Functional capacity and self-esteem of people with cerebral palsy. American Journal of Occupational Therapy, 72,
                                                                       7203205120. https://doi.org/10.5014/ajot.2018.025940

                                                                S
       Sandra Martina Espı́n-Tello, PhD, is Occupational             elf-esteem refers to a person’s sense of his or her worth (Blascovich &
       Therapist, Departamento de Fisiatrı́a y Enfermerı́a,
                                                                     Tomaka, 1991). High self-esteem is important for stable personal devel-
       Universidad de Zaragoza, Zaragoza, Spain;
       sandraespintello@gmail.com                               opment (Brooks, 1992) and for life satisfaction (Borg et al., 2008). Adolescents
                                                                with low self-esteem have poorer mental and physical health, worse economic
       Heather Olivia Dickinson, PhD, is Visiting               prospects, and higher levels of criminal behavior during adulthood (McGee &
       Researcher, Institute of Health and Society, Newcastle
       University, Newcastle-Upon-Tyne, England.
                                                                Williams, 2000; Orth, Robins, & Roberts, 2008; Trzesniewski et al., 2006). In
                                                                women, self-esteem has been shown to be correlated with active employment,
       Manuel Bueno-Lozano, PhD, is Pediatrician and            maintenance of intimate relationships, and health-promoting behavior (Nosek,
       Associate Professor, Departamento de Fisiatrı́a y        Hughes, Swedlund, Taylor, & Swank, 2003).
       Enfermerı́a, Universidad de Zaragoza, Zaragoza, Spain.
                                                                     Self-esteem has been reported to be lower in adolescents with cerebral palsy
       Marı́a Teresa Jiménez-Bernadó, PhD, is Physiatrist     (CP; Riad, Broström, & Langius-Eklöf, 2013), especially girls (Magill &
       and Assistant Professor, Departamento de Fisiatrı́a y    Hurlbut, 1986), and in women with disabilities (Nosek et al., 2003) than in
       Enfermerı́a, Universidad de Zaragoza, Zaragoza, Spain.
                                                                matched controls. One of the main factors underlying these differences is likely
       Ana Luisa Caballero-Navarro, PhD, is Pediatrician        to be functional ability. Alterations in body functions and structure directly
       and Associate Professor, Departamento de Fisiatrı́a y    affect functional capacity, hindering the performance of activities of daily living
       Enfermerı́a, Universidad de Zaragoza, Zaragoza, Spain.   (ADLs). These difficulties in function may, in turn, cause anxiety and psy-
                                                                chological distress; limitations in social participation and in personal and work
                                                                lives; and reduced self-esteem (Horsman, Suto, Dudgeon, & Harris, 2010).
                                                                Nevertheless, few studies have addressed the relationship between functional
                                                                ability and self-esteem in people with disabilities. Most of those that have done
                                                                so were restricted to adolescents (Manuel, Balkrishnan, Camacho, Smith, &
                                                                Koman, 2003; Riad et al., 2013) or young adults (Gannotti, Minter, Chambers,
                                                                Smith, & Tylkowski, 2011; Magill-Evans & Restall, 1991) with CP or to stroke

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patients (Chang & Mackenzie, 1998); based on small                         and functional capacity and capture the sociodemo-
       samples (Magill-Evans & Restall, 1991; Manuel et al.,                      graphic and impairment characteristics summarized in
       2003); restricted to those who were able to walk (Riad                     Table 1. Presence or absence of intellectual impairment
       et al., 2013); or conducted more than 10 yr ago.                           was obtained from clinical records with the participant’s
            To fill this gap, we conducted a study with the ob-                   consent, as was information not available from the par-
       jective of assessing whether functional capacity, with re-                 ticipant or information about which he or she was unsure.
       spect to ADLs, predicted self-esteem in a sample of adults                 Questions were repeated and explained in more detail if
       and young people with CP. CP comprises a group of                          necessary. Participants who did not understand the ques-
       movement and posture disorders, caused by a non-                           tions after such explanations were excluded. Eight people
       progressive insult to the developing brain of the fetus or                 with anarthria were interviewed using computer-aided
       young infant, that may result in functional limitations                    methods or pictograms.
       (Bax et al., 2005). Sensory, cognitive, perceptive, com-                         Outcome Variable. We evaluated self-esteem using the
       munication, or behavioral alterations or growth disorders                  Total score of the Rosenberg Self-Esteem Scale (RSES;
       may also be present. The prevalence of CP in Europe is                     Rosenberg, 1965). This instrument has been widely used
       1.77 per 1,000 live births (Sellier et al., 2016), and 46%                 in studies of self-esteem in the general population (Roth,
       of children with CP are unable to walk unaided at age                      Decker, Herzberg, & Brähler, 2008; Sinclair et al., 2010)
       5 yr (Beckung, Hagberg, Uldall, & Cans, 2008).                             and among people with disabilities (Blair, 1999; Chang &
            We chose CP as the disability of interest because its                 Mackenzie, 1998; Manuel et al., 2003; Nosek et al., 2003).
       effects are present throughout the life course, including the              It has been translated into Spanish (Martı́n-Albo, Núñez,
       critical periods of childhood and adolescence when both                    Navarro, & Grijalvo, 2007) and has shown excellent psy-
       functional skills and self-esteem are developing, and be-                  chometric properties in populations in the United States
       cause it manifests as a range of impairments whose severity                (Sinclair et al., 2010), Germany (Roth et al., 2008), and
       varies from mild to severe. We hypothesized that people                    Spain (Vázquez-Morejón, Jiménez, & Vázquez-Morejón,
       with better functional ability would have higher self-                     2004); Item Response Theory has confirmed its unidimen-
       esteem.                                                                    sionality (Roth et al., 2008). The RSES was developed for
                                                                                  use with adolescents but has since been widely used with a
       Method                                                                     variety of groups, including adults. It consists of 10 items
                                                                                  that address global feelings of self-worth, 5 targeted positively
       Participants
                                                                                  and 5 negatively. Each item is scored on a Likert-type scale
       The inclusion criteria were (1) a diagnosis of CP, (2)                     with four categories of response (1 5 strongly agree, 2 5
       communication ability (oral, written, or alternative), (3) ages            agree, 3 5 disagree, and 4 5 strongly disagree); negatively
       16–65 yr and resident in Spain. Because of the absence of                  targeted items are reverse scored. We summed these re-
       population-based registers in Spain of people with CP, we                  sponses to give a total score that could range from 10 (low
       used convenience sampling. The principal investigator (PI;                 self-esteem) to 40 (high self-esteem). Permission to use this scale
       Espı́n-Tello) developed a database of all centers in Spain                 was granted by BiblioPRO (http://www.bibliopro.org/).
       that she considered accessible, including schools, day care                      Putative Predictor. We evaluated functional capacity
       centers, residential homes and occupational centers for                    using the Barthel Index (BI; Mahoney & Barthel, 1965).
       people with special needs, and associations for people with                This instrument has been widely used in rehabilitation
       physical impairments. She next sent an information sheet                   research, in which it has been shown to have excellent
       about the study to the manager of each center, asking him                  reliability and validity (Cohen & Marino, 2000). It has
       or her to bring it to the attention of possible participants               been used in children and young adults with CP
       and, if necessary, their family or legal guardian. She then                (Ketelaar, Vermeer, & Helders, 1998; van der Dussen,
       contacted those who showed an interest in participating to                 Nieuwstraten, Roebroeck, & Stam, 2001), is brief and
       resolve any queries and provide further information. Those                 simple to administer, and has been translated into
       who agreed to participate were interviewed after they—or                   Spanish (Baztán et al., 1993). It consists of 10 items that
       their legal guardian—had read and signed a consent form.                   evaluate aspects of functional capacity with respect to
                                                                                  ADLs: feeding, bathing, grooming, dressing, bowels and
       Data                                                                       bladder management, toilet use, transfers (e.g., bed to
       The PI interviewed all participants face to face in their                  chair and back), mobility (on level surfaces), and stairs.
       school, day care center, or residential home between                       Responses have two, three, or four possible categories,
       January 1, 2013, and December 31, 2014, to assess self-esteem              each of which is assigned a number of points depending

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Table 1. Distribution of Sociodemographic Variables, the Barthel Index, and the Total Score of the Rosenberg Self-Esteem Scale
                                                                                                                      M (SD)                                              pa
       Variable                                                   N                  %                      BI                      RSES                       BI                   RSES
       Total                                                     108                100               48.4 (31.1)                 32.0 (5.2)
       Sex
         Male                                                     55                 51               51.3 (33.3)                 32.3 (5.3)                   .502                   .564
         Female                                                   53                 49               45.4 (28.6)                 31.7 (5.1)
       Age group, yr
         16–25                                                    12                 11               49.2 (33.7)                 32.7 (5.8)                   .646                   .059
         26–45                                                    58                 54               50.8 (32.9)                 32.9 (4.8)
         46–65                                                    38                 35               44.5 (27.5)                 30.3 (5.3)
       Highest education level
         None                                                     14                 13               33.2 (29.1)                 29.1 (4.0)                   .012                   .002
         Primary school                                           43                 40               44.3 (29.8)                 31.7 (4.8)
         Secondary school                                         16                 15               45.9 (30.8)                 31.3 (5.7)
         Postcompulsory education                                 12                 11               48.8 (27.4)                 30.4 (5.8)
         Higher education                                         23                 21               66.7 (30.7)                 35.6 (4.4)
       Employment status
         Active employment or student                             23                 21               69.8 (32.5)                 35.3 (4.7)
sexes, we repeated this for males and females separately.                  the most frequent marital status was single. Almost half
       The model with both sexes combined was then adjusted                       were living in a care home, and only 7% were living in-
       for each covariate in turn. Both RSES and BI were treated                  dependently. Most participants (81%) had spastic CP, 77%
       as continuous variables. Covariates were treated as cate-                  were unable to walk without help, and 19% had intellectual
       gorical variables. The largest group was chosen as the                     impairment. Both RSES and BI scores were significantly
       reference group to yield narrower confidence intervals for                 (p < .02) higher among people with a higher level of ed-
       estimated effects in nonreference groups; similar cate-                    ucation, in active employment, and living independently
       gories were amalgamated if they were not significantly                     or with family.
       different. We checked that the final model satisfied the
       assumptions of linear regression (Altman, 1990). Signif-                   Hypothesis Testing
       icance was set at p < .05.                                                 Figure 1 shows the relationship between RSES and BI
            This study was approved by the Departamento de                        scores along with the simple linear regression line and its
       Fisiatrı́a y Enfermerı́a of the Faculty of Health Sciences of              95% confidence interval (CI). The regression coefficient
       the University of Zaragoza and by the Clinical Research                    was 0.047, 95% CI [0.017, 0.078], p 5 .003; see first
       Ethics Committee of Aragón.                                               line of Table 2), indicating that the RSES score increased
                                                                                  on average 0.047 points when the BI increased 1 point.
                                                                                  The R2 was 8%, reflecting the wide scatter of points seen
       Results                                                                    in Figure 1 and indicating that the BI explained only 8%
       A total of 108 people participated in the study. The mean                  of the variation in the RSES. Residuals from this model
       age of the sample was 41.3 yr. The average RSES score was                  were checked visually and showed no indication of de-
       32.0 (standard deviation [SD] 5 5.2, range 5 18–40).                       viations from the assumptions of homoscedasticity, line-
       The median BI score was 37.5 (range 5 0–100), an                           arity, and normality that underlie linear regression or of
       indication that most participants had severe functional                    outlying points that could have had undue influence on
       dependence.                                                                the model. The relationship was similar for both sexes
                                                                                  (regression coefficient 5 0.038, 95% CI [20.004, 0.081]
       Descriptive Statistics                                                     for men and 0.059, 95% CI [0.011, 0.107] for women).
       The sample included similar proportions of men (51%)                       Adjustment for age as a possible confounder made little
       and women (49%; Table 1). Most participants (89%) were                     difference to this relationship (see Table 2); the regression
       older than age 25 yr. Approximately 20% had completed                      coefficient for the BI remained virtually unchanged and
       higher education, but most had not progressed beyond                       highly significant, although participants ages 46–65 yr
       primary school. Most were unemployed or pensioners, and                    had significantly lower RSES scores than others.

       Figure 1. Scatterplot of the Total scores on the Rosenberg Self-Esteem Scale and the Barthel Index, showing the estimated regression line
       and its 95% confidence interval in shading.

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Table 2. Regression of the Total Score of the Rosenberg Self-Esteem Scale on the Barthel Index, Adjusted For Sociodemographic Variables
                                                                                                                                          Coefficient for
                                                                                                   Coefficient for Barthel Index    Sociodemographic Variable
       Sociodemographic Variable Used for Adjustment                                               B          95% CI           p     B        95% CI         p     R2
       None (simple linear regression, unadjusted)                                              0.047     [0.017, 0.078]     .003                                   8
       Age group: 46–65 yr (ref.: 16–45 yr)                                                     0.044     [0.014, 0.074]     .005   -2.3   [24.3, 20.3]     .023   13
       Highest level of education: higher education (ref.: none, primary, or secondary)         0.032     [0.001, 0.063]     .044    3.8     [1.4, 6.1]     .002   16
       Employment situation: Active employment/student (ref.: inactive/pensioner)               0.031    [20.001, 0.064]     .054    3.3     [0.9, 5.8]     .007   14
       Marital status: with partner (ref.: single)                                              0.047     [0.016, 0.078]     .004    0.6    [22.1, 3.4]     .636    8
       Living arrangements: with family or independent (ref.: care home or day care center)     0.026     [–0.007, 0.058]    .122    3.7     [1.4, 5.9]     .002   16
       Note. Empty cells indicate data that were not applicable. Statistically significant values (p < .05) are in bold. R2 is the percentage of variance on the Rosenberg
       Self-Esteem Scale that is explained by the model. B 5 regression coefficient; CI 5 confidence interval; ref. 5 reference group.

            We included each potential mediating variable in the                            also a complete absence of missing data, despite the col-
       regression in turn (see Table 2). Education, employment,                             lection of a large amount of information describing socio-
       and living arrangements were significant: Participants with                          demographic factors.
       higher education had a higher RSES score than others by                                   Although we found that functional capacity was a
       an average of 3.8 points, 95% CI [1.4, 6.1]; those who                               statistical predictor of self-esteem, it is difficult to infer that
       lived independently or with family had a higher RSES                                 this relationship is causal. In principle, the most con-
       score by 3.7 points, 95% CI [1.4, 5.9]; and those who                                vincing evidence for causality is provided by longitudinal
       were students or in active employment had a higher RSES                              studies, but these may not be enlightening in populations
       score by 3.3 points, 95% CI [0.9, 5.8]. However, inclusion                           such as those we have studied in which disability is stable
       of employment or living arrangements resulted in the re-                             over time. Nevertheless, the robustness of the association
       gression coefficient for the BI decreasing substantially and                         found in our cross-sectional study suggests that functional
       becoming nonsignificant, reflecting the high correlations                            capacity influences self-esteem.
       between these covariates and the BI (p from Mann–                                         More education, active employment, and living in-
       Whitney test < .002). The models that included education                             dependently or with one’s family were also statistical
       and living arrangements accounted for the most variance in                           predictors of higher self-esteem. However, these socio-
       the RSES scores (16%). After excluding 16- to 25-yr-olds                             demographic factors were so highly correlated with each
       who might not have completed their education, entered                                other and with the BI that it was difficult to determine
       employment, or started living independently, these effects                           the underlying factor. They may, as postulated, be on a
       changed little. Because education, employment, and living                            causal pathway between functional capacity and self-
       arrangements were highly correlated (p from x
Research on closely related populations supports our                  allow stronger inferences about causality. A larger sample
       findings. In a study of adolescents with CP, Manuel et al.                 would allow one to conduct an analysis using structural
       (2003) found that self-esteem was significantly correlated with            equation modeling, a multivariate technique used to es-
       physician-assessed functional ability. In a cross-sectional study          timate and test supposed causal relationships (Kline,
       of 881 women, approximately half of whom had disabilities,                 2010). National population-based registers of people
       Nosek et al. (2003) found that self-esteem was significantly               with CP should be created in Spain, to facilitate epide-
       associated with both disability and employment. Although,                  miological studies of higher quality, which would allow a
       like us, they postulated that disability influenced self-esteem,           better understanding of the prevalence of CP and of the
       they assumed that self-esteem influenced employment,                       situation and needs of those affected. Future studies should
       whereas we assumed the opposite direction of causality.                    also consider additional factors that might influence self-
                                                                                  esteem of people with CP, in particular personality traits such
                                                                                  as the Big Five: openness to experience, conscientiousness,
       Limitations and Future Research                                            extraversion, agreeableness, and neuroticism (Karwowski,
       Selection bias may have arisen in two ways. First, because of              Lebuda, Wisniewska, & Gralewski, 2013).
       the lack of population-based registers of people in Spain
       with CP, we were unable to select a random sample from all
       Spanish people with CP. Thus, our sample overrepresented                   Implications for Occupational
       older adults and those with more severe impairment.                        Therapy Practice
       However, selection bias is more likely to affect estimates of              The results of this study have the following implications
       means than of associations, which were the statistic of                    for occupational therapy practice:
       interest in the current study (Korn & Graubard, 1999).                     • It is important that occupational therapy programs
            Second, our study was conducted in Spain, which                          help people with impairment to perform ADLs as in-
       could compromise its relevance to other countries. However,                   dependently as possible. In addition to the intrinsic
       societal attitudes toward disability in Spain appear to be                    benefits gained, our study shows this is likely to lead to
       close to the average of a diverse range of countries (Room,                   higher self-esteem.
       Rehm, Trotter, Paglia, & Ustun, 2001). Furthermore,                        • By working with individuals to improve function and
       Spain is one of the 171 countries that have ratified the                      advocating for improved accessibility, occupational
       United Nations Convention on the Rights of Persons                            therapy practitioners can facilitate access to higher ed-
       With Disabilities (United Nations, 2006), which obliges                       ucation, independent living, and active employment.
       states to promote mobility, independent living, education,
       an accessible environment, employment, and social par-
       ticipation for people with disabilities. Although the United               Conclusion
       States has not ratified this convention, the Americans With                Greater functional capacity predicts higher self-esteem in
       Disabilities Act of 1990 (Pub. L. 101-336) has similar aims.               people with CP. It is likely that education, employment,
       Both frameworks address the situation during childhood,                    and independent living mediate the effect of functional
       when functional skills and self-esteem are developing.                     capacity on self-esteem. National policies should facilitate,
       Therefore, the results of our study are likely to be applicable            through the removal of social, physical, and attitudinal
       outside Spain, given that the countries that subscribe to                  barriers, the access of people with severe impairment to
       these legal instruments are likely to have similar facilitators            higher levels of education, homes in which they can live
       and barriers to disability.                                                independently, and an active working life. s
            In addition, intellectual or communication difficulties
       may have resulted in erroneous responses, which could                      Acknowledgments
       have attenuated the estimate of the relationship between                   We thank all participants in the study and all professionals
       self-esteem and functional capacity. Finally, interviewer                  and colleagues who helped recruit the sample. We also
       bias may have arisen because the sole interviewer had the                  thank Allan Colver for helpful comments on the article.
       same pathology as those interviewed. This may have
       resulted in interviewees responding more openly with                       References
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