Research in Developmental Disabilities 35 (2014) 414–422

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Research in Developmental Disabilities

Household task participation of children and adolescents with cerebral palsy, Down syndrome and typical development Maı´ra Ferreira do Amaral a,1, Adriana de Franc¸a Drummond a,1, Wendy J. Coster b,2, Marisa Cotta Mancini c,1,* a

Department of Occupational Therapy, School of Physical Education, Physical Therapy and Occupational Therapy, Universidade Federal de Minas Gerais, Av. Antoˆnio Carlos, 6627, Campus UFMG, Pampulha, Belo Horizonte, MG CEP 31270-010, Brazil Department of Occupational Therapy, College of Health and Rehabilitation Sciences: Sargent College, Boston University, 635 Commonwealth Avenue, Boston, MA 02215, USA c Department of Occupational Therapy and Graduate Program in Rehabilitation Sciences, School of Physical Education, Physical Therapy and Occupational Therapy, Universidade Federal de Minas Gerais, Av. Antoˆnio Carlos, 6627, Campus UFMG, Pampulha, Belo Horizonte, MG CEP 31270-010, Brazil b

A R T I C L E I N F O

A B S T R A C T

Article history: Received 25 September 2013 Received in revised form 14 November 2013 Accepted 18 November 2013 Available online 18 December 2013

This cross-sectional study compared patterns of household task participation (e.g., performance, assistance and independence) of youth with cerebral palsy (CP), Down syndrome (DS) and typical development (TD). Parents of 75 children and adolescents were interviewed to report on their youths’ active engagement in daily self-care and family-care tasks, using the children helping out: responsibilities, expectations and supports (CHORES) questionnaire. Groups were equivalent in age (mean = 9.3 years; SD = 2.2 years), sex (male = 39; female = 36), respondent education, presence of maid, and number of siblings at home, but differed on child cognitive function and family socioeconomic status, with the DS and the CP groups scoring lower than the TD group but not different from each other. ANOVA revealed group differences on CHORES performance of self-care tasks (p = 0.004), on total participation score (p = 0.04) and on assistance scores (p < 0.02). Post hoc comparisons showed that TD group scored higher than CP and DS groups on performance and assistance in self-care tasks and total assistance; TD and CP groups were similar on total performance and assistance in family-care tasks. The groups also differed on independence indices; the TD index was greater than the CP and DS, and the CP index was greater than the DS. Parents from the three groups did not differ on ratings of importance regarding their children’s household participation (p = 0.416). In spite of observed differences, children and adolescents with CP and DS are actively engaged in daily self-care and family-care tasks; their participation at home is not prevented by the presence of their disabilities. ß 2013 Elsevier Ltd. All rights reserved.

Keywords: Home participation Childhood disability Youth Independence

* Corresponding author. Tel.: +55 31 3409 4790. E-mail addresses: [email protected] (M.F.d. Amaral), [email protected] (A.d.F. Drummond), [email protected] (W.J. Coster), [email protected], [email protected] (M.C. Mancini). 1 Tel.: +55 31 3409 4790. 2 Tel.: +1 617 353 7518. 0891-4222/$ – see front matter ß 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ridd.2013.11.021

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1. Introduction It is known that children and youth with disabilities show more restricted participation in context-specific tasks and activities compared to typically developing peers (e.g., Palisano et al., 2011; Shikako-Thomas et al., 2013; Law et al., 2013; Hoogsteen & Woodgate, 2010). Studies have shown patterns of reduced participation of children and youth with a variety of different disabilities including physical disabilities (e.g., Bult, Verschuren, Jongmans, Lindeman, & Ketelaar, 2011; Dunn & Gardner, 2013; King et al., 2006; Law, Petrenchik, King, & Hurley, 2007; Law et al., 2013; Longo, Badia, & Orgaz, 2013; Schenker, Coster, & Parush, (2005)), developmental delay (Leung, Chan, Chung, & Pang, 2011), Down syndrome (Wuang & Su, 2012), and other conditions (e.g., Arim, Findlay, & Kohen, 2012; Dunn, Coster, Cohn, & Orsmond, 2009; Dunn, Coster, Orsmond, & Cohn, 2009; Engel-Yeger & Hamed-Daher, 2013; Masse, Miller, Shen, Schiariti, & Roxborough, 2012). Most of this research has focused on participation in school (Law et al., 2007; Leung et al., 2011; Masse et al., 2012; Schenker et al., 2005) and leisure/recreational environments (e.g., Engel-Yeger & Hamed-Daher, 2013; Law et al., 2007; Longo et al., 2013; Masse et al., 2012; Palisano et al., 2011; Shikako-Thomas et al., 2013; Wuang & Su, 2012). More recently, participation in household activities has also been investigated (Dunn & Gardner, 2013; Dunn, Coster, Cohn et al., 2009; Dunn, Coster, Orsmond et al., 2009; Law et al., 2013). Outside of school, home is the environment in which children and youth with disabilities spend most of their time, thus it is also an important setting in which to examine participation. The original definition of the participation concept proposed by the International Classification of Functioning, Disability and Health (World Health Organization, 2001) – ‘‘involvement in life situations’’ – was generic and vague. Consequently, it has been further specified. Coster and Khetani (2008) discussed the temporal and spatial dimensions of participation, which helped describe this concept in more detail. They contend that participation can be understood as the extent to which an individual is involved in, that is, actively engages or takes part in, the structured sequences of daily life activities that compose the typical routines of a relevant social group (e.g., one’s family). These routines take place in specific settings (e.g., home), which represent the spatial dimension of participation. Examining the participation of children and youth with disabilities in more detail within relevant settings where they live and interact can provide useful insight into the environment and structure for daily learning that is offered to them. Clearer description of the opportunities for participation that are endorsed by the social group (i.e., family) for children’s involvement is needed to gain a better understanding of the possibilities for fostering positive youth development in meaningful settings such as home. Positive youth development (PYD) is a concept that emerged from efforts to examine the process of development from a positive and preventive perspective, especially periods of high vulnerability and probability of problems such as adolescence and early adulthood (Larson, 2000; Lerner, Almerigi, Theokas, & Lerner, 2005; Shek, Sun, & Merrick, 2012). The approach to analysis emphasizes integrated competences, rather than isolated problems, and a person-in-environment perspective. PYD focuses on pathways that lead children and adolescents to become motivated, engaged, socially competent, self-determined, optimistic, interested and involved. Such pathways are thought to build social, cognitive, academic and emotional competence and to contribute to positive developmental outcomes in adulthood (Lerner et al., 2005; Shek et al., 2012). The field of positive youth development may provide a useful alternative perspective for research and practice in rehabilitation. In particular, the positive focus associated with the PYD concept may help shift the focus of research from describing functional impairments, limitations and restrictions experienced by children with disabling conditions to a focus on their opportunities for developing specific skills as well as initiative, sense of responsibility, self-efficacy and social competence. Participation in everyday occupations is thought to be essential for finding purpose and meaning in life (Dunn & Gardner, 2013; Law, 2002). Engagement in household tasks reinforces the sense of belonging as a member of a family. For children and youth it offers an environment for learning daily tasks that support caring for self, caring for others and for shared spaces (Dunn & Gardner, 2013; Dunn et al., 2009a,b). As children and adolescents gradually take increased responsibility in household tasks, they are being prepared for independent living in the community (Dunn & Gardner, 2013; Dunn et al., 2009a,b; Law et al., 2013; Law, 2002). Active involvement in these structured daily activities also may help them develop positive attributes such as initiative and agency, which are relevant to their sense of competence and positive identity (Lerner et al., 2005). Thus an important question is to what extent children and adolescents with disabilities are provided these important learning opportunities at home. Most studies have compared the participation of children and adolescents with a specific type of disability, e.g. cerebral palsy, with that of typically developing peers. This type of design is used to identify restrictions and limitations of children with a disabling condition in relation to the normative reference. In contrast, the present study includes youth with Down syndrome as well as youth with cerebral palsy, in addition to the typically developing youth. This design enables examination of how opportunities for household task participation provided by parents of children and adolescents may vary given the different capabilities of children with cognitive/behavioral or neuromotor disorders and typically developing peers. The study aims to provide insight into the patterns of household task participation of children with distinct types of disabling conditions and the areas in which they are encouraged to take responsibility as part of their routine at home. The objective of this study was to compare patterns of participation in household tasks in children and adolescents with cerebral palsy (CP), Down syndrome (DS) and typically developing peers (TD). The specific research questions were: (1) What is the pattern of participation of children and adolescents with CP, DS and TD in household tasks related to routines of self-care and family-care?

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(2) Which tasks are children from these three groups most likely to perform independently? (3) What assistance do parents typically provide to support their children’s household participation? (4) Is household participation associated with severity of motor impairment (i.e., mobility and hand use in CP) or general cognitive function? (5) Do parents of children and adolescents with and without disabilities give equal importance to participation in household tasks?

2. Method 2.1. Participants Participants were parents of children and adolescents ages 6–14 years old from three groups: typically developing, cerebral palsy, and Down syndrome, all residents of the city of Belo Horizonte, MG, Brazil. Parents of children and adolescents with disabilities were recruited from rehabilitation centers, outpatient clinics and regular schools in the city of Belo Horizonte and in cities from the interior of Minas Gerais state, in southeastern Brazil. Parents of TD children and adolescents were recruited from the social network of friends and colleagues of the first author. During recruitment effort was made to make the three groups equivalent with respect to children’s age, sex, city of permanent address and family socioeconomic status. Criteria for the group with cerebral palsy were that the child or adolescent had a medical diagnosis of cerebral palsy and was classified as level I, II or III on the gross motor function classification system (GMFCS) (Palisano et al., 1997) and on the manual abilities classification system (MACS) (Eliasson et al., 2006), which indicate mild to moderately severe limitation in mobility and hand use, respectively. In both classification systems, children of level III have a high likelihood of using assistive devices such as a walker or crutches for mobility and adaptive utensils for eating. However, we did not gather information about assistive device usage for participants from either disability group. Inclusion criterion for the DS group was a medical diagnosis of Down syndrome and regular school attendance in regular classrooms (e.g., public or private school). Criteria for participation in the TD group were that the child or adolescent had no medical diagnosis or history of impairment and was attending a regular school. Sample size estimation was based on effect sizes calculated (d = 0.99 to d = 1.16) from the study of Dunn et al., 2009a,b, which compared participation in household tasks of children and adolescents with and without attention deficit disorder with hyperactivity (ADHD), considering a = 0.05, 2-tail test and power = 0.80. 2.2. Measures 2.2.1. Children helping out: responsibilities, expectations and supports (CHORES) The CHORES was used to identify the child’s participation in learning opportunities related to everyday tasks. It measures the caregiver’s perspective on their child’s engagement in household tasks (Dunn, 2004). It is a 34-item parent report covering ages 6–14 years. The CHORES includes two subscales: (1) The Self-care subscale includes 13 household tasks that focus on managing own needs, belongings, and space (e.g., preparing own meal, cleaning up own room); (2) The Family-Care subscale includes 21 functional tasks that address taking care of others’ needs, belongings and common shared space (e.g., caring for younger siblings, doing the dishes, preparing family snack and meal). The CHORES has two types of summary scores: a performance score and assistance score. Performance is scored dichotomously (yes/no); a yes indicates that the parent currently expects their child to participate in the task. Assistance is rated on a 6-point Likert scale, where 6 means that the youth does the task on own initiative >50% of the time and 1 means youth cannot do the task. Intermediate assistance scores describe distinct types and levels of caregiver assistance (i.e., when asked, with supervision/monitoring, with some assistance, with a lot of assistance). Higher performance scores mean the youth engages in a greater number of household tasks and higher assistance scores indicate greater independence (Dunn, 2004). Thus, the CHORES generate six possible scores: Overall performance and assistance scores, as well as performance and assistance scores for each subscale (self-care and family-care). In part 2 of the instrument, an additional item asks parents to rate how important their child’s participation in household tasks is, using a six-point Likert scale ranging from very important to very unimportant. The psychometric properties of the CHORES have been reported elsewhere (Dunn et al., 2009a,b; Dunn, Magalha˜es, & Mancini, 2014; Dunn, 2004). The CHORES was recently translated to Brazilian-Portuguese and had its cultural adequacy and psychometric properties tested (Amaral, Paula, Drummond, Dunn, & Mancini, 2012); this was the version used in the present study. 2.2.2. Kaufman brief intelligence test (KBIT-2) The Kaufman brief intelligence test (KBIT-2) (Kaufman and Kaufman, 2004) was used to obtain a measure of general cognitive function for all participants as well as to describe the intellectual disability of participants with Down syndrome. The KBIT-2 is a screening measure of verbal and non-verbal intelligence for persons 4 through 90 years of age. The verbal scale contains two kinds of items, verbal knowledge and riddles, which measure knowledge of words and their meanings. These items cover receptive and expressive vocabulary and do not require reading or spelling. The nonverbal scale includes

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the matrices subtest that assesses the ability to solve new problems by perceiving relationships and completing analogies. Items are shown to the respondent as pictures and abstract designs rather than words, which allow assessment of nonverbal ability even when language skills are limited. Items are full-colored and attractive to children and youth. Items from the verbal and non-verbal scales are scored, standardized for age, and can be transformed into a composite IQ score with a mean of 100 and a standard deviation of 15. The KBIT-2 has shown good evidence of reliability and validity (Kaufman, & Kaufman, 2004). Family’s socioeconomic status was documented with a system typically used in Brazil for census and population estimates.3 This method assigns scores for the presence and number of specific home appliances, presence of a maid, owning a vehicle, and education of main home maintainer (i.e., elementary, middle, or high school, undergraduate education). Scores are summed to yield a total score; intervals of total scores indicate specific socioeconomic categories or levels. The present study used the total raw score for description of family’s socioeconomic status. 2.3. Procedure Measures were administered in a single session by the same examiner, who was trained in the administration procedures of all instruments. Prior to data collection, inter-examiner reliability was tested on a group of parents of 13 children and adolescents; five typically developing and eight with a disability (CP or DS). The CHORES was administered twice to the same group within a period of seven to 14 days. Reliability indices revealed excellent stability, ranging from 0.93–0.97 across the scales. Caregivers who agreed to participate signed the consent form before the start of the face-to-face interview. The interview lasted about 40 min and was conducted in a setting the parents identified as convenient for them, such as their home or the outpatient clinic where their children received rehabilitation services. The Ethics Review Committee from the Universidade Federal de Minas Gerais, Brazil, approved the study (approval: ETIC 0384.0.203.000-10). 2.4. Data transformation and analysis Before data analysis, transformation of raw scores was conducted. Scores from CHORES assistance scales (i.e., assistance in self-care, family-care, and total) were adjusted by the number of tasks parents expected their child or adolescent to perform. Following the steps outlined by Dunn (2004), the assistance scores were transformed into weighted percentage scores (weighted percent of maximum possible – WPOMP) using the procedure described by Cohen et al., 1999. Ratings of 5 and 6 on an item indicate that the child does the task when asked or on own initiative with relative frequency; this rating was used as an indicator of the youth’s independence in the task (Dunn, 2004). An independence index was calculated for each child by summing the number of items on which the youth was rated independent (scores 5 or 6) and then dividing this sum by the total number of tasks the parent or caregiver expected the youth to perform (i.e., assistance ratings greater then zero). Pearson correlations were conducted to examine the association between CHORES scores and cognitive function in each group. One-way ANOVA was conducted to compare the mean CHORES scores of children and adolescents from the three groups. Chi-square test was used to examine the association between group and frequency of parents’ ratings of importance (i.e., very important; important), regarding their child’s participation in household tasks. ANOVA was used to compare the scores of youth with CP at different GMFCS and MACS levels. When a significant effect was observed, a post hoc Tukey test was performed to identify bivariate differences. Level of significance was set at a = 0.05.

3. Results 3.1. Demographic characteristics Descriptive information about the children and their families is shown in Table 1. There were 75 participants in total: 25 parents of children and adolescents with cerebral palsy (CP), 25 parents of children and adolescents with Down syndrome (DS), and 25 parents of typically developing children and adolescents (TD). The three groups were equivalent in child age (mean = 9.3 years; SD = 2.2 years) and sex (male = 39; female = 36), respondent education, presence of maid, and number of siblings at home. As expected, the groups differed on child cognitive function. Both the DS and CP groups scored lower and were significantly different from the TD group, but not significantly different from each other. Average IQ composites for both CP and DS groups were within the ‘‘lower extreme’’ descriptive category (i.e., IQ 69 or less; Kaufman & Kaufman, 2004). The ANOVA on socioeconomic status was also significant, with the CP group showing lower mean raw score compared to the TD group.

3

Brazil Socioeconomic criteria (CCEB) is available at: http://www.abep.org/novo/Content.aspx?SectionID=84.

M.F. Amaral et al. / Research in Developmental Disabilities 35 (2014) 414–422

418 Table 1 Descriptive characteristics of sample.

TD (n = 25)

Characteristic Children

a

Sex Age groupa

Male 6–8 years 9–11 years 12–14 years Verbal knowledge Non-verbal knowledge IQ composite

Cognitive functionb

Respondents

Family structure

Relation with childa Schoolinga

Mother N/S Elementary High school Undergraduate

Socio-economic statusb Presence of maida Siblings at homea

Raw score No 0e1 2e3

15 (60%) 10 (40%) 10 (40%) 5 (20%) 104.48 (14.5) 95.48 (16.9) 100.24 (15.7)

CP (n = 25)

DS (n = 25)

p-value

12 (48%) 12 (48%) 11 (44%) 2 (8%) 73.76 (19.2) 68.08 (17.6) 67.4 (19.0)

12 (48%) 16 (64%) 6 (24%) 3 (12%) 43.96 (7.4) 47.8 (7.4) 42.68 (5.0)

0.618 0.351

(80%) (4%) (52%) (36%) (8%)

0.411 0.059

(5.9) (88%) (68%) (32%)

0.040 0.581 0.086

22 2 10 10 3

(88%) (8%) (40%) (40%) (12%)

21 0 19 5 1

(84%) (76%) (20%) (4%)

20 1 13 9 2

2248 23 23 2

(6.6) (92%) (92%) (8%)

1812 24 22 3

(5.2) (96%) (88%) (12%)

2004 22 17 8

0.001 0.001 0.001

TD, typical development group; CP, cerebral palsy; DS, Down syndrome; IQ, intellectual coefficient. a Numbers indicate frequency and (percent). b Numbers indicate mean and (standard deviation).

3.2. Participation in household tasks Groups differed on performance of self-care tasks and on total participation score, as well as on all three assistance scores. Post hoc comparisons revealed that the TD group scored higher than CP and DS groups on performance and assistance in selfcare tasks and total assistance. However, TD and CP groups’ scores were similar for total performance and assistance in family-care tasks. Mean scores for both of these groups were higher than the DS group mean (see Table 2). The groups also differed on all three independence indices (i.e., self-care, family-care and total). Post hoc results showed that the TD independence index was greater than the CP and DS groups, and the CP group index was greater than the DS index (see Table 2). The independence index is a proportion of the number of items children in each group actually performed. However the raw totals show the same pattern as, on average, the TD group received scores of 5 and 6 on 16 of the 34 CHORES items (min = 5, max = 29 items), the CP group achieved these scores on 10 items (min = 5, max = 27 items), and the DS group on 7 items (min = 1, max = 18 items). Table 2 shows results of group comparisons on performance, assistance and independence indexes. Table 3 presents Cohen’s d effect sizes for the bivariate group comparisons. Table 4 shows the number of children in each group who were rated by parents as independent on the individual CHORES items from the self-care and family-care subscales. Although the results in Table 4 show differences in the pattern of self-care and family-care tasks that parents in the three groups engage their children in, parents did not differ on their ratings of importance regarding their children’s household participation. As seen in Table 5, most parents rated their children’s participation in household tasks as very important or important. No association was found between group and ratings of importance (p = 0.416).

Table 2 Group comparison of participation in household tasks. TD (n = 25) Mean Performance 8.64a Self-care Family-care 9.08 Total 17.72b Weighted assistance scores Self-care 8.07a Family-care 8.17b Total 16.26a Independence index Self-care 0.84a Family-care 0.80a Total 0.82a

CP (n = 25)

DS (n = 25)

p-value

SD

Mean

SD

Mean

SD

2.64 4.15 6.18

7.16 8.32 15.48

2.61 3.94 5.89

6.76 7.12 13.88

2.70 3.83 6.02

0.004 0.218 0.040

2.46 3.48 5.37

6.20 6.97 13.14

2.51 3.60 5.58

5.52 5.67 11.17

1.88 2.41 3.89

0.001 0.022 0.001

0.24 0.27 0.24

0.48 0.30 0.38

0.26 0.23 0.23

0.0001 0.0001 0.0001

0.18 0.23 0.20

0.65c 0.56c 0.60c

SD, standard deviation; TD, typical development; CP, cerebral palsy; DS, Down syndrome. a TD > (CP and DS). b TD > DS. c CP > DS.

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Table 3 Cohen’s d effect size from the bivariate group comparison on CHORES household task participation. Comparison

Effect size d CHORES performance and assistance sub-scales

TD  CP TD  DS CP  DS

PSC

PFC

TP

ASC

AFC

TA

0.56 0.70 0.15

0.18 0.49 0.30

0.37 0.63 0.27

0.75 1.16 0.30

0.34 0.83 0.42

0.57 1.08 0.41

TD, typically developing group; CP, cerebral palsy group; DS, Down syndrome group; PAC, performance in self-care; PFC, performance in family-care; TP, total performance; ASC, assistance in self-care; AFC, assistance in family-care; TA, total assistance.

Table 4 Frequency of children in each group rated by parents as independent in the individual CHORES items. Self-care items (total = 13)

TDa (n = 25)

CPa (n = 25)

DSa (n = 25)

Family-care items (total = 21)

TDa (n = 25)

CPa (n = 25)

1. Cleans up after own play 2. Picks up own bedroom

17 14

(68%) (56%)

18 5

(72%) (20%)

15 3

(60%) (12%)

13 8

(52%) (32%)

11 1

3. Makes own bed

15

(60%)

5

(20%)

3

(12%)

4

(16%)

1

5. Puts away own clothes 6. Makes self a snack 7. Makes self a cold meal 9. Makes self a hot meal 17. Puts own laundry in hamper 18. Puts away own clean laundry 22. Sweeps or vacuums own room 23. Dusts own room 30. Organizes own belongings for school 31. Organizes own belongings for after-school events

16 23 8 8 22

(64%) (92%) (32%) (32%) (88%)

13 19 1 0 22

(52%) (76%) (4%) (0%) (88%)

11 19 0 0 22

(44%) (76%) (0%) (0%) (88%)

4. Picks up area shared by others 8. Prepares part of a cold meal for the family 10. Prepares part of a hot meal for the family 11. Sets or clears the table 12. Brings in or puts away groceries 13. Washes dishes (loads dishwasher) 14. Dries dishes (unloads dishwasher) 15. Takes out the garbage/recycling

12 13 12 6 16

(48%) (52%) (48%) (24%) (64%)

16

(64%)

13

(52%)

7

(28%)

16. Cleans bathroom

9

8

(32%)

8

(32%)

4

(16%)

19. Sorts laundry for family

12 19

(48%) (76%)

11 7

(44%) (28%)

4 13

(16%) (52%)

19

(76%)

10

(40%)

6

(24%)

DSa (n = 25)

(44%) (4%)

7 0

(28%) (0%)

(4%)

0

(0%)

10 8 7 6 6

(40%) (32%) (28%) (24%) (24%)

6 4 5 5 7

(24%) (16%) (20%) (20%) (28%)

(36%)

4

(16%)

1

(4%)

0

(0%)

5

(20%)

2

(8%)

20. Puts laundry away for family 21. Runs washer/dryer

3 4

(12%) (16%)

7 4

(28%) (16%)

3 1

(12%) (4%)

24. Sweeps or vacuums home

9

(36%)

4

(16%)

4

(16%)

11 2 17 9 11 13 18 18

(44%) (8%) (68%) (36%) (44%) (52%) (72%) (72%)

7 7 7 5 15 7 9 14

(28%) (28%) (28%) (20%) (60%) (28%) (36%) (56%)

3 5 5 3 18 0 5 8

(12%) (20%) (20%) (12%) (72%) (0%) (20%) (32%)

25. 26. 27. 28. 29. 32. 33. 34.

Dusts the house Cares for plants Feeds pet (s) Cares for younger sibling Cares for other family members Takes a phone message Runs errand Gets the mail or the newspaper

TD, typically developing group; CP, cerebral palsy group; DS, Down syndrome group. a Numbers indicate frequency and (percent within group).

Table 5 Parental opinion about the importance of their children’s participation at home. Ratings

TDa (n = 25)

CP* (n = 25)

DS* (n = 25)

(6) Very important (5) Important (4) Somewhat important (3) Somewhat unimportant (2) A little important (1) Not important Mean SD

19 (76%) 6 (24%) – – – – 5.76 0.4

21 (84%) 2 (8%) – 1 (4%) 1 (4%) – 5.64 1.0

17 (68%) 7 (28%) – 1 (4%) – – 5.6 0.7

SD, standard deviation; ND, typically developing; CP, cerebral palsy; DS, Down syndrome. a Numbers indicate frequency of responses (percent within group).

p-value

0.416

420

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Analyses of variance showed that household task participation (i.e., performance and assistance) did not differ for subgroups of children and adolescents with CP classified either by GMFCS or MACS levels (p > 0.05). Correlations between CHORES subscale scores and children’s cognitive function were significant only in the TD group and specifically on the nonverbal knowledge score, with correlations of moderate magnitude for performance in self-care (r = 0.45) and family-care (r = 0.44), total performance score (r = 0.48) and total assistance (r = 0.42). 4. Discussion This study found both differences and similarities in patterns of performance, assistance and independence in household tasks by children and adolescents with cerebral palsy, Down syndrome and typical development. Differences between children and adolescents with DS and TD were more frequently observed and showed larger effects than differences between TD and CP and between CP and DS groups. Participants with DS performed a smaller number of household self-care tasks, received more assistance from their caregivers in self-care and family-care tasks, and had lower independence indices in these two types of tasks compared to the TD group. The increased need for assistance and lower rates of independent performance found in this study for the disability groups echoes the findings of Dunn et al. (2009b) with youth with ADHD and Dunn and Gardner (2013) with youth with physical disabilities. Children and adolescents with DS did not differ from those with CP, either on performance of household tasks or on assistance provided by their caregivers to perform these tasks. However, although the assistance provided to the participants in the two groups was similar, their independence indices differed, with the CP group showing significantly higher indices on both self-care and family-care sub-scales. One interpretation of these results is that task performance and independent task performance represent different aspects of household task engagement for children and adolescents with CP and DS. Task performance ratings include being able to carry out the various aspects of a task with assistance and/or monitoring. For example, mastering the performance of making self a snack involves abilities such as reaching, holding and transporting food. In addition to these physical requirements, independent task performance also has an intrinsic cognitive component, as it requires the ability to initiate the task and carry out all the necessary steps on one’s own. Caregiver assistance to children and adolescents with CP and DS supports the learning process through supported participation. Children with CP and DS may have difficulty with both the physical and cognitive aspects of task performance. If their difficulties are primarily with the physical aspects of task performance, once they have learned these skills or have developed alternative strategies, they may quickly progress to independence in task performance. On the other hand, for children and adolescents with significant intellectual disabilities, mastering the physical aspects of task performance will not be sufficient to achieve independence in a task. Efforts to foster home participation for these children may be targeted at expanding the number of tasks they engage in and/or gradually decreasing the assistance provided. The CHORES classifies household tasks into two categories: one related to competence in own care and care of own space at home (i.e., self-care), and the other composed of tasks focusing on care of family members, of shared spaces and of other household that are family-related (i.e., family-care). These two types of household tasks differ in complexity, with the family-care tasks typically requiring organization and performance of more complex sequences of behavior compared to the self-care tasks. This distinction in complexity may account for the greater variability (i.e., standard deviation values) in family-care tasks compared to the self-care tasks in all three groups. The complex requirements of family-care tasks decreases the likelihood that children and adolescents with disabilities, as well as younger children with typical development, will be competent to perform them without assistance. For example, the task demands for self-care tasks such as cleans up after own play, makes own bed, and organizes own belongings for school are relatively simple and they often happen in a smaller and more structured space compared to family-care tasks such as cleans bathroom, sets or clears table, and cares for younger sibling or other family members. However, after mastering self-care tasks, being able to take care of others and of shared spaces at home may be an important step toward preparing children and adolescents with disabilities for independent living in their community. The distinct complexity in the CHORES sub-scales content is also revealed when we observe the frequency of children from each group whose parents rated them as independent in specific tasks (Table 4). After adjusting for the number of items in the self-care (n = 13) and family-care (n = 21) subscales, relatively more items from the self-care subscale were performed independently by over 50% of youth from the TD group (69% of items), followed by the CP group (38.4% of items) and DS group (30.7%). For the family-care subscale the percent of items performed independently was 33.3% (TD), 9.5% (CP) and 4.7% (DS). Thus, in spite of differences on the independence index, the pattern of household participation shows quite a number of tasks that are performed independently by children from all three groups. Thus children and adolescents with CP and DS are actively engaged in daily self-care and family-care tasks; their participation at home is not prevented by the presence of their disabilities. Further research to understand the household tasks they are not involved is needed to guide efforts to increase and expand their participation at home. Larson (2000) argued that the development of initiative in older children and adolescents is a key element for positive youth development (PYD) and a relevant requirement for development of other qualities such as creativity, leadership, altruism, and agency that also contribute to the youth’s life engagement and empowerment. Larson also claims that initiative emerges from children’s and adolescents’ daily experience, however, Western culture does not provide enough opportunities for the development of initiative. Children are often regarded as dependent on their caregivers and given limited responsibility to care for themselves and for others in their daily routine. However once they reach adulthood, they

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are expected to be independent, self-reliant, and in charge of all aspects of their lives. Structured household tasks can be conceived as a natural and ordinary context well suited for the development of initiative in children and adolescents. Although Larson’s arguments have focused on typically developing youth, it is equally important to ensure that children and adolescents with disabilities also have daily opportunities for initiative development. Parents of children and adolescents from all three groups consistently agreed on the importance of participation in household tasks. This raises the question of what accounts for the different levels of task performance across groups. There are several possibilities to consider. First, the parents of children with disabilities may have focused their attention on engaging the children in those tasks best suited to their current abilities. Thus, rather than try to engage the children in many different tasks, they have focused their attention on a small set, those seen as most feasible. To the extent that cognitive level may be a key factor affecting what the child is ready to do, this explanation may account for why the group with DS participated in the fewest tasks since it was the group with the lowest cognitive level. A second possibility, not unrelated to the first, is that the parent’s definition of ‘‘importance’’ refers to their overall value of having children help at home and not necessarily to ‘‘how much’’ they are currently helping on a daily basis. In addition, previous research has documented how families of children with disabilities actively orchestrate their daily and weekly schedules to fit with their overall goals and values for the family (Gallimore et al., 1996). Engagement in household tasks is therefore one of many potential activities that the caregiver must decide among and then allot time and energy toward. In this situation, the parent may focus on engaging their child only in the tasks that they deem most valuable or otherwise important at the moment. These possibilities and others are in need of further research. A better understanding of how and why parents make the decisions they do about engaging their children in these household tasks is needed in order to provide better assistance to families trying to prepare their children and adolescents for independence. One limitation of our study acknowledges that household task involvement has a strong cultural influence; as the study was conducted in Brazil, it is possible that cultural specificities may have influenced the results. To the best of our knowledge, in general the cultural context of the children’s homes was more similar than different to that of the American samples that have been studied previously with the CHORES. However, it is important to examine whether patterns found in this study are replicated in other countries. Also, although sample size was appropriately based on power analysis, groups were still relatively small to capture to full range of relevant variation in the phenomenon of household participation. Our study shows patterns of household participation in children and adolescents with and without disabilities. Thus, youths with CP and DS were shown to be actively engaged in a number of self-care and family-care tasks. Conflict of interest The authors declare no conflict of interest. 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Household task participation of children and adolescents with cerebral palsy, Down syndrome and typical development.

This cross-sectional study compared patterns of household task participation (e.g., performance, assistance and independence) of youth with cerebral p...
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