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 The American Journal of Occupational Therapy 7203205120p1 Downloaded From: http://ajot.aota.org/pdfaccess.ashx?url=/data/journals/ajot/936803/ on 03/22/2018 Terms of Use: http://AOTA.org/terms
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 7203205120p2 May/June 2018, Volume 72, Number 3 Downloaded From: http://ajot.aota.org/pdfaccess.ashx?url=/data/journals/ajot/936803/ on 03/22/2018 Terms of Use: http://AOTA.org/terms
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. 7203205120p4 May/June 2018, Volume 72, Number 3 Downloaded From: http://ajot.aota.org/pdfaccess.ashx?url=/data/journals/ajot/936803/ on 03/22/2018 Terms of Use: http://AOTA.org/terms
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 more confidence, and possibly exaggerating. Altman, D. (1990). Practical statistics for medical research. Future studies should use random sampling, stratified London: Chapman & Hall. by age, so that the results can be generalized to the wider Americans With Disabilities Act of 1990, Pub. L. 101-336, 42 population of people with CP. Longitudinal studies would U.S.C., xx 12101–12213 (2000). 7203205120p6 May/June 2018, Volume 72, Number 3 Downloaded From: http://ajot.aota.org/pdfaccess.ashx?url=/data/journals/ajot/936803/ on 03/22/2018 Terms of Use: http://AOTA.org/terms
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