RESEARCH ARTICLE
Hand Use at Home and in Clinical Settings by Children with Cerebral Palsy: A Qualitative Study Marina Brandão1, Juliana Melo Ocarino2, Kátia Maria Penido Bueno3 & Marisa Cotta Mancini2*† 1
Graduate Program in Rehabilitation Sciences, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil
2
Graduate Program in Rehabilitation Sciences, School of Physical Education, Physical Therapy and Occupational Therapy, Universidade
Federal de Minas Gerais, Belo Horizonte, Brazil 3
Undergraduate Program of Occupational Therapy, Faculdade de Ciencias Medicas de Minas Gerais, Belo Horizonte, Brazil
Abstract The purpose of this study was to understand the physical, attitudinal, and assistive characteristics of the home and the therapeutic settings that enable and/or hinder hand use by children with spastic hemiparesis CP. A qualitative study with 7 children with CP, their caregivers, and therapists was conducted. Children were observed at home and in their therapeutic settings to understand the supports and barriers from these environments regarding their use of the affected hand. Semi-structured interviews were conducted with caregivers and therapists. The transcribed interviews and field diaries were used for content analysis. The following thematic categories were drawn from the data analyses: (1) use when needed: from consistent to nonuse of the affected extremity; (2) making decisions: choosing to use or not use the affected extremity; and (3) responsibilities with activities: from complete dependence to independent performance. Discrepancies between caregivers and therapists’ attitudes and actions towards children’s hands use highlight the specific features from each context that facilitated or hindered children with CP’s engagement in functional activities. Recommendations for future studies include investigating the relationship between the identified facilitators and improvements in children’s effective hand use in home and clinical settings. Copyright © 2014 John Wiley & Sons, Ltd. Received 7 February 2014; Revised 11 August 2014; Accepted 2 October 2014 Keywords cerebral palsy; hand function; pediatric occupational therapy *Correspondence Marisa C. Mancini, Graduate Program in Rehabilitation Sciences, School of Physical Education, Physical Therapy and Occupational Therapy, Universidade Federal de Minas Gerais, Av. Antônio Carlos 6627, Campus Pampulha, 31270-901 Belo Horizonte, MG, Brazil. †
Email: [email protected]; [email protected]
Published online 29 October 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/oti.1383
Introduction Hand function involves intentional actions for reaching, manipulating, and releasing objects to meet the demands of specific contexts (Eliasson, 2005). Hand impairments in children with cerebral palsy (CP) vary from subtle Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
manual dexterity difficulties to need for extensive assistance and/or adaptations (Arner, Eliasson, Nicklasson and Sommerstein, 2008); however, these impairments in body functions and structures cannot thoroughly explain children’s hand use in performing daily activities. In fact, objects, social interactions, and attitudes that are 43
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part of a specific setting may or may not support children with CP’s hand use to meet the functional expectations and demands, thus, making hand function a contextspecific phenomenon. Hand use is characterized by constant interactions between the subjects and their reference contexts. According to the International Classification of Functioning, Disability, and Health (ICF), context is composed of environmental and personal factors that may impact individual’s functioning (World Health Organization, 2001). Personal factors, such as personality, temperament, and age, along with characteristics of physical, social, and attitudinal environments provide a context for daily life (Gannotti, 2006). Thus, there is a strong interdependence between individual’s characteristics and the environmental structure in which actions take place (Goodwin and Duranti, 1992). The influence of contextual factors in the performance of daily living and mobility activities by children with CP has been demonstrated in the literature. Tseng, Chen, Shieh, Lu, and Huang (2011) reported that the presence of siblings, parental marital status, socioeconomical level, and stress levels of caregivers, influenced the functional performance of children with CP in self-care activities. The mobility of children with CP in an optimized environment and in their natural environment is also influenced by the individual’s interactions with his or her context. The choice of child’s mobility methods (e.g. walking or using wheelchair) (Tieman, Palisano, Gracely, and Rosenbaum, 2007), as well as the use of assisting devices (Huang, Sugden, and Beveridge, 2009), varies according to contextual features (e.g. surfaces, distances, and social expectations), revealing an interdependence between children’s actions and their contexts. Some authors have emphasized the importance of analyzing contextual features to help understand hand use in individuals with hemiparetic CP (Skold, Josephsson, and Eliasson, 2004). In a qualitative study, Skold, Josephsson, and Eliasson (2004) explored the perception of young adults with spastic hemiparesis in planning strategies to perform tasks that require bimanual use. The implementation of strategies to meet functional demands resulted from careful evaluation of the available options in specific situations, as well as the negative consequences that participants could tolerate. Participants attributed their difficulties in bimanual activities to the need for planning, continued concentration during the activity, the 44
demands for extra time, and increased effort or compensation by other body parts. The authors also reported the perceptions of participants during the planning and performance of daily living activities, the strategies used to meet the activity demands, and the negative consequences associated with their difficulties in bimanual activities due to their impairments. Current understanding supports the argument that the development and use of action strategies in bimanual activities are related to the demands of the individualin-context unit. As the routines and demands of a therapeutic setting are distinct from those of other settings (such as home or school), and considering that performance is context-specific, the understanding of mechanisms underlying hand use in children with CP may elucidate the influence of contextual factors on functioning. The purpose of this study was to explore the physical, attitudinal, and assistive characteristics that enable and/or hinder hand use by children with spastic hemiparesis CP, at home and therapeutic settings.
Method Study design This is a descriptive qualitative study. As children’s actions occur in various places and environments, we chose to investigate the influence of home and clinical settings structure in fostering and/or hindering children with CP hand use in functional activities. Children and their families were observed during daily routines at home, as well as children and therapists during occupational therapy sessions. After the observations, we conducted semi-structured interviews with caregivers and therapists.
Participants Seven children were selected from Associação Mineira de Reabilitação, a local rehabilitation center in Belo Horizonte, Brazil. Selection criteria were: (1) children between the ages of 4 to 12 years with medical diagnosis of spastic hemiparesis CP; (2) manual abilities classified as levels I, II, or III according to the Manual Ability Classification System (MACS) (Eliasson et al., 2006); and (3) weekly attendance at the rehabilitation center’s occupational therapy service. Children who had associated movement disorders (e.g. athetosis, corhea), mental or sensory disorders (e.g. hearing or visual impairment) were excluded. Children’s individual Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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chart report was used to identify those who met the selection criteria; they were further invited to participate in the study and no one declined the invitation. The demographic characteristics of the children (gender, age, and classification of hand function), information about the caregivers (gender and kinship to the child), and about the therapists (gender and years of professional experience) are presented in Table I. The names of the children in the study have been replaced with fictitious names in order to maintain anonymity. The study was approved by the Ethics Review Committee from the Universidade Federal de Minas Gerais, Brazil (ETIC 274/10). Caregivers, therapists, and children were contacted for participation in the study and signed informed consent form.
Procedures Observations of children’s daily routines took place during one (n = 3) or two visits (n = 4) to their home, with an average duration of 4 h while they were not in school. The choice to return to some children’s home occurred when it was not possible to observe their main daily living activities, such as grooming, eating, dressing, and playing in only one visit. Observations of occupational therapy sessions took place at the rehabilitation center over 2 sessions. The observations at home and in the clinic aimed at understanding how contextual factors (such as physical environment, interactions between children and adults, adult assistance, attitudes, and child’s behaviour) influence hand use. In the field diary, we recorded information obtained during these observations. The annotations on this filed diary comprised descriptions of children’s and adults’ actions and behaviours during the performance of daily living activities at home and
during the proposed activities in clinical setting in order to capture “child-in-activity” unit. Interviews with caregivers and therapists broadened the understanding of children’s hand use in home and clinical environments, respectively. All interviews were conducted individually at a private office in the local rehabilitation center, by the same researcher, after the observations. During the interviews, children were not present. The researcher and all participants spoke the same language (Portuguese), and the interviews had an average duration of 15–20 min. Specifically, the semistructured interviews with caregivers and occupational therapists were guided by questions about children with CP’s use of hands in their daily routine activities (i.e. How does the child perform activities that require hands use ?) as well as on the barriers and facilitators in performing these activities (i.e. Which activities are easy/difficult for the child to perform? What elements make such activities easy/difficult?), children’s strategies and reactions (i.e. How does the child deal with difficulties to perform activities that require the use of hands? How does he/she feel when he/she faces difficulties related to hand use?), and the reasons for and type of assistance provided by the caregiver or therapist (i.e. What type of assistance do you offer to the child in activities that require hand use? Why do you help him/her?). All interviews were recorded on a portable digital voice recorder and transcribed for further analysis. Interviews are considered a valuable source of rich descriptions of situations and contexts (Silverman, 2006).
Data analysis The text transcriptions from interviews and the field diary were analysed using content analysis. Specifically, content analysis seeks to understand the thoughts of
Table I. Descriptive information of the children, caregivers, and therapists participants of the study Child Child Lucas Luiza Iara Gustavo Artur Jose Juliana
Age 6 years and 9 years and 9 years and 4 years and 6 years and 5 years and 8 years and
9 months 2 months 3 months 2 months 11 months 5 months 4 months
Caregiver Gender M F F M M M F
MACS Level I II II II II III III
Therapist
Gender
Kinship to child
Gender
Professional experience
F F F F F F F
Mother Mother Grandmother Mother Grandmother Aunt Mother
F F F F F F F
3 years 20 years 4 years 20 years 5 years 20 years 20 years
Gender: F—Female; M—Male
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the subjects through the content expressed in various formats (i.e. speech, observed behaviour) (Silverman, 2006). This type of analysis uses the method of frequency deduction (e.g. repetitions in the text) and the emergence of thematic categories (Silverman, 2006). Content analysis consists of the following steps: pre-analysis of the content by using the floating reading method, formulating hypotheses and indicators, exploring the content by encoding the data into thematic units, and processing and interpreting data by categorizing elements that are similar and different (Hsieh and Shannon, 2005). Content analysis of the transcribed interviews and the observations was conducted with N-Vivo 8 software® (QRS International, 2008), a software that organizes data, searches for similarities and differences in the information, selects, excerpts, and organizes thematic categories.
Results and discussion The thematic categories drawn from observations at home and in occupational therapy sessions, as well as from the interviews with caregivers and therapists included: (1) use when needed: from consistent to nonuse of the affected extremity, (2) making decisions: choosing to use or not to use the affected extremity, (3) responsibilities with activities: from complete dependence to independent performance. The first category was further divided in two topics: child’s interest and low sense of his/her own abilities and other behavioural issues. Use when needed: from consistent to nonuse of the affected extremity The occurrence of children’s using of their affected hand in routine activities varied across settings (clinic and home). While some therapists and caregivers reported that children used their hands in bimanual tasks either constantly or occasionally, others reported sporadic or nonuse. During observations at home and in the clinic, we noted that all children spontaneously used the affected hand in some bimanual activities, especially in circumstances in which the activity could not be accomplished with only one hand. “To cut the dough, child uses a knife and fork. Puts the fork in right hand [affected hand] and grabs the knife with the left [non-affected hand].”(observation at Gustavo’s session) “He picks up colour markers. He uses the left hand [affected hand] to hold the marker and the pen lid with 46
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the right one [non-affected hand].”(observation at Lucas’ home) According to Skold et al. (2004), an individual’s success in performing daily activities depends on the relationship between one’s abilities, the demands of the activities, and the environmental characteristics. Supporting this argument, the results of the present study reveal that hand use depends not only on child’s capabilities but also on characteristic of activities and contextual factors. In the present study we observed specificities of the relationship child-activity-context that favoured or hindered child’s use of the affected hand. For example, among the facilitators, some intrinsic characteristics of the child seemed to foster the use of the affected hand, such as child’s interest, while other intrinsic characteristics seemed to contributed to his/her nonuse, such as low sense of his/her own abilities. Child’s interest: Caregivers and therapists agreed that the child’s interest was an important element related to hand use. The extent to which the activity interested the child contributed to his/her affected extremity use. “Same with yoyo. Wasn’t it his interest? The yoyo I spoke with him twice to place his fingers like this and said, “Hold the way you prefer, and then you pass, and quickly you pass. It was his interest, he’s doing it. When it’s in his interest, he does it. (Artur’s grandmother)”; “motivation, logically. Because if he is not motivated in the task, he tries to change, lingers on, he loses his concentration. So, he doesn’t want to end the activity. But if he is motivated, if it’s something he likes, he gets excited and then he automatically uses his hand actively”.(Lucas therapist) As stated above, therapists interpreted child’s interest as an indicative of his/her motivation towards the activity. Morgan, MacTurk, and Hrncir (1995) identified motivation as a psychological force that drives the individual to achieve a goal without the need for external rewards, leading him/her to engage in challenging tasks. As such, motivation for a child with CP is considered an important element supporting functional performance (Majnemer, Shevell, Law, Poulin, and Rosenbaum, 2010) at home, school, and clinical settings (Majnemer, Shevell, Law, Birnbaum, Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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Chilingaryan, Rosenbaum, et al., 2008; Yap, Majnemer, Benaroch, and Cantin, 2010). Majnemer et al. (2010) studied the influence of motivation on the functional performance of children with CP. They reported that motivated children showed fewer limitations in daily living activities and behavioural problems, with a reduced family burden. Eliasson (2005) identified motivation as a major factor influencing hand function in children with hemiparesis, suggesting that children’s interest is essential for learning new tasks. Parents and therapists refer to child’s interest, and it was further interpreted by therapists as an indication of motivation. The child’s demonstrated interest in a manual activity is certainly related to his/her motivation. However, the extent to which child’s interest captures the essence of the motivation concept, as well as the contributions of motivation to children with CP’s effective hand use, remain to be empirically investigated. Other facilitating factors reported by caregivers included characteristics of the activity (e.g. low difficulty) and the use of a neoprene glove for positioning of the child’s wrist, used by two children. The therapists also mentioned characteristics related to the child’s cognitive skills (e.g. ability to solve problems and freedom to perform the activity), contextual factors such as support and attitudes from adults (e.g. encouragement, nonprovision of physical assistance, verbal assistance), and the physical environmental structure. Low sense of his/her own abilities other behavioural issues: Factors hindering the use of the affected hand, as identified by caregivers and therapists, referred to children’s attitudes (e.g. low sense of his/her own abilities, disobedient behaviour, and lack of interest). “He doesn’t, he doesn’t do it. He thinks it’s difficult. Like, sometimes, he says, “Ah, I won’t do it because I’m disabled.” He already says this. So he thinks that it’s his problem, he sees his difficulties, so he says that he won’t be able, that it’s too difficult”. (Lucas’mother) “Sometimes the motor side is not the problem, it is more the issue of concentration, even behaviour. Sometimes it is, the activity is difficult, he comes and says “Oh, this is hard right?” And “Oh, this will not be able to do.” Already talking “Oh, more difficult, because I’ll not be able to do it.”.(Lucas’ therapist) According to Sterr, Freivogel, and Schmalohr (2002), individuals with hemiparesis who face challenges in Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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performing activities that involve use of the affected extremity tend to underestimate their skills. This leads to a discrepancy between their skill repertoire (i.e. potential) and the extent of their actual performance of daily activities. In addition, therapists also identified cognitive skills (e.g. difficulty in concentration and problem solving), high demand of the activity, and family context (e.g. lack of structured routines, high expectations) as specific factors that hindered hand use. Making decisions: choosing to use or not to use the affected extremity We identified two main groups of strategies used by children when dealing with difficulties in manual activities: requesting help from an adult and using compensations (e.g. bringing objects close to the body, readjusting objects with the unaffected hand, using broad movements and surfaces to support the prehension or stabilization of objects, not using the paretic hand). The most common strategy reported by the caregivers was the request for help. “She does that…she says “Oh mum, this I cannot do, can you do it for me?” She asks for help you know?”(Juliana’s mother) However, observations at home revealed that compensations, such as the nonuse of the paretic extremity, was the most common strategy. “He handles large and heavy toothpaste with one hand, even with difficulty does not plan to use both hands”.(observation at Joseph’s home) The therapists’ reports added by observations during the intervention sessions revealed that the main strategy contributing to the use of the affected extremity was the use of the paretic hand with compensations, bringing the objects close to the body. “The child, whenever she has difficulty handling the box or the cards, places the objects near the body”.(observation at Lucas’ occupational therapy session) Faced with daily challenges, children with hemiparesis use several strategies to seek success, varying from nonuse of affected hand, using the affected hand with posture compensations or asking for help. The type of 47
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strategy chosen involves many factors that can affect the desired outcome, such as social expectations, the activity’s specific characteristics (i.e. objects and surfaces), and personal characteristics. These strategies impact their functioning, since they require time and action planning, use of adapted objects, or increased use of other body parts for compensation (Skold, Josephsson, and Eliasson, 2004). In therapy sessions, the structuring of the environment and the mediating attitude of the therapist to engage the child in the chosen activity seems to have favoured the choice for using the affected upper extremity. In daily routine activities at home, such as bathing and dressing, requests for assistance were frequent, culminating in extensive involvement of caregivers. Responsibilities with activities: from complete dependence to independent performance Types of assistance varied across settings. As observed at home, caregivers performed some activities for the child. “To comb her hair, grandmother combs the child.”(Iara’s grandmother) In other situations, they provided physical assistance to the child, helping in the most difficult steps of the tasks. “The mother helps the child to dress his underpants, then the child puts on shorts and a shirt by himself.”(observation at Lucas’ home) On the other hand, most of the help provided by therapists during the occupational therapy sessions related to structuring and providing incentive to child’s actions, fostering shared responsibilities on the performance of activities that required affected hand use. “And I have helped in a way, yes, it’s by simplifying the steps a bit. I’m starting with the simplest, he’s already starting to cope, so we can evolve into a more difficult one, right?”(Artur’s therapist) “Therapist gives some verbal directions, occasionally to tying shoelaces, reminding a few steps.”(observation at Luiza’s occupational therapy session) According to Darlington and Rodger (2006), the family plays a major role in assisting a child’s occupational 48
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performance. By establishing routines, parents can create opportunities for practicing and developing necessary skills (Kellegrew, 2000). However, parents of children with hemiparesis may feel unable to provide these opportunities, since the child’s disabilities place additional demands on the family, culminating in extensive help. This undermines the child’s opportunity to perform daily activities, requiring time and effort from the caregiver (Butcher, Wind, and Bouma, 2008). Therefore, professionals must collaborate with families so that the acquisition and consolidation of the child’s emergent skills can be reinforced on a daily basis. The reasons for providing help also differed between therapists and caregivers. Therapists indicated helping the children in order to encourage them to undertake activities, which was corroborated with occupational therapy sessions observations. “She shows how to open the box that has a lock that needs to be pressed, but the child has difficulty. The therapist then begins to open the box and he continues.”(observation at Lucas’ occupational therapy session) “It’s because, it depends on the day and activity. Usually, it is for him to feel more motivated. So if it’s the beginning, I give this kind of help today to get him motivated into the activity.”(Lucas’therapist) At the therapeutic setting, often considered an optimized context, the therapist provided assistance because of the child’s motor and behavioural difficulties, aiming to encourage and engage the child in the activity. According to Eliasson (2005), one of the important prerequisites in treatment planning is the therapist’s skill to analyse the children’s ability to use their hands and compare these abilities with the complexity of the task. Such actions can result in the provision of activities that are challenging to the child, but still ensure success in performance. In this sense, the therapists chose to position children’s upper extremity and/or to guide their movements, as well as to assist them with specific steps (e.g. more difficult) of the task, thereby prioritizing the use of hands in the sessions. Actions focused on improving the child’s tasks performance in the clinical setting did not, however, guarantee transfer to the home environment, as in the latter, similar activities of daily living were performed with extensive help from the caregivers. Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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Caregivers attributed the reason for providing assistance to children’s disobedient behaviour, “Grandmother calls the child and she pretends not to hear. Places pillow over the head. Grandma pulls the child to take a shower.”(observation at Iara’s home), time constraints, “give [bath]. Him. I take the sponge and … because bathing is a rush because we get home late, we wake up and already don’t have much time.(Gustavo’s mother)” and because they are used to help children with their daily routine at home. “I put his shoes on. {Why?} Don’t know, I think it’s because I’ve become used to it.”(Artur’s grandmother) Kellegrew (2000) argue that environmental factors modify the practices and goals of families’ self-care routines; time was further considered as an important element for the provision of assistance to children with disabilities by their caregivers. Children who are less competent in performing self-care activities or receive fewer opportunities to independently perform such activities, do so by demanding a longer time to perform effectively (Kellegrew, 2000). Thus, provision of additional assistance and decreased engagement by children with disabilities in their daily routine is often attributed to reduce the need for extra time. Through observations at home, it seems that the time constraints are also related to the lack of structuring of the child’s daily routine, often because parents do not provide enough time for children’s performance. Moreover, issues related to the child’s disobedient behaviour, a common condition in those with hemiparesis (Butcher, Wind, and Bouma, 2008), may contribute to increased stress levels of caregivers, reflecting their difficulty in dealing with the child and culminating in extensive assistance (Kellegrew, 2000). Faced with the child’s motor impairments and his/her disobedient behaviour, caregivers offer extensive help, often performing the activity that the child could allegedly contribute. This action ends up reinforcing the child’s perception of low effectiveness and their choice of requesting help from the adult, when faced with a functional challenge. The information from the interviews complemented by the observations at home and at the clinic revealed specific differences in the structuring of each setting. The gap between what children with CP are capable Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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of performing in the clinical setting and what they accomplished at home is revealed by the specific perceptions of caregivers and therapists about the children’s use of their hands. Although parents and therapists of children with hemiparesis expect they use the paretic upper extremity more often and in a more qualified way (Skold, Josephsson, Fitinghoff and Eliasson, 2007), their specific strategies to foster such use and their provision of assistance reveal the complex interplay between the child and the demands from each context. It is important that rehabilitation professionals recognize specificities of each context, so as to maximize the child’s ability and promote improved engagement in daily routine. Such actions should not only focus on the skills needed to use the hands but also on structuring the routines of the children and their families and in recognizing the personal and environmental factors which may present as barriers or as facilitators of their performance (Rosenberg, Jarus, Bart, and Ratzon, 2011). The observations were an important source of information on the use of the affected hand, strategies chosen by the children when dealing with difficulties, and assistance provided by adults. Through interviews with caregivers and therapists, it was possible to describe the elements from household and clinical settings that impact on the use of hands by children with hemiparetic CP. However, one limitation of the present study was that it did not include the perceptions of the children as important actors of this phenomenon, thus, our analyses were based solely on interviews with adults and on direct observations. The reason for not conducting interviews with children was due to their difficulties in verbally expressing abstract concepts; their age range could have interfered with their verbal elaboration.
Conclusion The use of hands by children with spastic hemiparesis is embedded in the individual–activity–context interplay. The discrepancy between the actions of caregivers and therapists, the main elements of the home and clinical environments, reveals the specificities of these contexts, facilitating or hindering the use of hands in daily routine activities, choice of strategy, and reactions of children to the anticipation of challenging experiences. Future studies should focus on investigating the relationship between the identified facilitators and improvements in children with CP’s effective hand use in home and clinical settings. 49
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Acknowledgements We thank families and therapists from Associação Mineira de Reabilitação who agreed to participate in the study. Support was provided by research grants and scholarships from two Brazilian funding agencies, National Council for Scientific and Technological Development (CNPq) and Foundation for Research Support of Minas Gerais state (FAPEMIG). REFERENCES Arner M, Eliasson AC, Nicklasson S, & Sommerstein K (2008). Hand function in cerebral palsy. Report of 367 children in a population-based longitudinal health care program. Journal of Hand Surgery 33: 1337–1347. doi: 10.1016/j.jhsa.2008.02.032. Butcher PR, Wind T, Bouma A (2008). Parenting stress in mothers and fathers of a child with a hemiparesis: sources of stress, intervening factors and long-term expressions of stress. Child: Care, Health & Development 34: 530–541. doi: 10.1111/j.1365-2214.2008.00842.x. Darlington Y, Rodger S (2006). Families and children’s occupational performance. In: Rodger S, Ziviani J (eds). Occupational therapy for children: understanding children’s occupations and enabling participation (pp. 22–40). Carlton: Blackwell Publishing. Eliasson AC (2005). Improving the use of hands in daily living activities: aspects of treatment of children with cerebral palsy. Physical & Occupational Therapy in Pediatrics 25: 37–60. Eliasson AC, Krumlinde-Sundholm L, Rosblad B, Beckung E, Arner M, Ohrvall AM, Rosenbaum P (2006). The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Developmental Medicine & Child Neurology 48: 549–554. Gannotti M (2006). Eco-cultural frameworks and child disability: a case study from Puerto Rico. Physiotherapy: Theory & Practice 22: 137–151. Goodwin C, Duranti A (1992). Rethinking context: an introduction. In: Duranti A, & Goodwin C (eds). Rethinking context: language as an interactive phenomenon (pp. 1–42). Cambridge: Cambridge University Press. Hsieh HF, Shannon SE (2005). Three approaches to qualitative content analysis. Qualitative Health Research 15: 1277–1288. Huang J, Sugden D, Beveridge S (2009). Assistive devices and cerebral palsy: the use of assistive devices at school by children with cerebral palsy. Child: Care, Health & Development 35: 698–708. Kellegrew DH (2000). Constructing daily routines: a qualitative examination of mothers with young children 50
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with disabilities. The American Journal of Occupational Therapy 54: 252–259. Majnemer A, Shevell M, Law M, Birnbaum R, Chilingaryan G, Rosenbaum P, Poulin C (2008). Participation and enjoyment of leisure activities in school-aged children with cerebral palsy. Developmental Medicine & Child Neurology 50: 751–758. doi: 10.1111/j.1469-8749.2008.03068.x. Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P (2010). Level of motivation in mastering challenging tasks in children with cerebral palsy. Developmental Medicine & Child Neurology 52:1120–1126. doi: 10.1111/j.1469-8749.2010.03732.x. Morgan GA, MacTurk RH, Hrncir EJ (1995). Mastery motivation: overview, definitions, and conceptual issues. In: MacTurk RH, Morgan GA (eds). Mastery motivation: origins, conceptualizations, and applications (pp. 1–18). Norwood: Ablex Publishing Corporation. QRS International (2008). N Vivo Qualitative data analysis software. (vols. 8). Rosenberg L, Jarus T, Bart O, Ratzon NZ (2011). Can personal and environmental factors explain dimensions of child participation? Child: Care, Health & Development, 37; 266–275. doi: 10.1111/j.1365-2214.2010.01132.x. Silverman D (2006). Interpreting qualitative data: methods for analyzing talk, text and interaction. 3 ed. London: Sage Publications. Skold A, Josephsson S, Eliasson AC (2004). Performing bimanual activities: the experiences of young persons with hemiplegic cerebral palsy. The American Journal of Occupational Therapy 58: 416–425. Skold A, Josephsson S, Fitinghoff H, Eliasson AC (2007). Experiences of use of the cerebral palsy hemiplegic hand in young persons treated with upper extremity surgery. Journal of Hand Therapy 20: 262–272. Sterr A, Freivogel S, Schmalohr D (2002). Neurobehavioral aspects of recovery: assessment of the learned nonuse phenomenon in hemiparetic adolescents. Archives of Physical Medicine & Rehabilitation 83: 1726–1731. Tieman B, Palisano RJ, Gracely EJ, Rosenbaum PL (2007). Variability in mobility of children with cerebral palsy. Pediatric Physical Therapy 19: 180–187. Tseng MH, Chen KL, Shieh JY, Lu L, Huang CY (2011). The determinants of daily function in children with cerebral palsy. Research in Developmental Disabilities 32:235–345. doi: 10.1016/j.ridd.2010.09.024 World Health Organization (2001). International Classification of Functioning, Disability and Health. Geneva: WHO. Yap R, Majnemer A, Benaroch T, Cantin MA (2010). Determinants of responsiveness to botulinum toxin, casting, and bracing in the treatment of spastic equinus in children with cerebral palsy. Developmental Medicine and Child Neurology 52: 186–193. doi: 10.1111/j.1469-8749.2009.03365.x. Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
Hand Use at Home and in Clinical Settings by Children with Cerebral Palsy: A Qualitative Study Marina Brandão1, Juliana Melo Ocarino2, Kátia Maria Penido Bueno3 & Marisa Cotta Mancini2*† 1
Graduate Program in Rehabilitation Sciences, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil
2
Graduate Program in Rehabilitation Sciences, School of Physical Education, Physical Therapy and Occupational Therapy, Universidade
Federal de Minas Gerais, Belo Horizonte, Brazil 3
Undergraduate Program of Occupational Therapy, Faculdade de Ciencias Medicas de Minas Gerais, Belo Horizonte, Brazil
Abstract The purpose of this study was to understand the physical, attitudinal, and assistive characteristics of the home and the therapeutic settings that enable and/or hinder hand use by children with spastic hemiparesis CP. A qualitative study with 7 children with CP, their caregivers, and therapists was conducted. Children were observed at home and in their therapeutic settings to understand the supports and barriers from these environments regarding their use of the affected hand. Semi-structured interviews were conducted with caregivers and therapists. The transcribed interviews and field diaries were used for content analysis. The following thematic categories were drawn from the data analyses: (1) use when needed: from consistent to nonuse of the affected extremity; (2) making decisions: choosing to use or not use the affected extremity; and (3) responsibilities with activities: from complete dependence to independent performance. Discrepancies between caregivers and therapists’ attitudes and actions towards children’s hands use highlight the specific features from each context that facilitated or hindered children with CP’s engagement in functional activities. Recommendations for future studies include investigating the relationship between the identified facilitators and improvements in children’s effective hand use in home and clinical settings. Copyright © 2014 John Wiley & Sons, Ltd. Received 7 February 2014; Revised 11 August 2014; Accepted 2 October 2014 Keywords cerebral palsy; hand function; pediatric occupational therapy *Correspondence Marisa C. Mancini, Graduate Program in Rehabilitation Sciences, School of Physical Education, Physical Therapy and Occupational Therapy, Universidade Federal de Minas Gerais, Av. Antônio Carlos 6627, Campus Pampulha, 31270-901 Belo Horizonte, MG, Brazil. †
Email: [email protected]; [email protected]
Published online 29 October 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/oti.1383
Introduction Hand function involves intentional actions for reaching, manipulating, and releasing objects to meet the demands of specific contexts (Eliasson, 2005). Hand impairments in children with cerebral palsy (CP) vary from subtle Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
manual dexterity difficulties to need for extensive assistance and/or adaptations (Arner, Eliasson, Nicklasson and Sommerstein, 2008); however, these impairments in body functions and structures cannot thoroughly explain children’s hand use in performing daily activities. In fact, objects, social interactions, and attitudes that are 43
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part of a specific setting may or may not support children with CP’s hand use to meet the functional expectations and demands, thus, making hand function a contextspecific phenomenon. Hand use is characterized by constant interactions between the subjects and their reference contexts. According to the International Classification of Functioning, Disability, and Health (ICF), context is composed of environmental and personal factors that may impact individual’s functioning (World Health Organization, 2001). Personal factors, such as personality, temperament, and age, along with characteristics of physical, social, and attitudinal environments provide a context for daily life (Gannotti, 2006). Thus, there is a strong interdependence between individual’s characteristics and the environmental structure in which actions take place (Goodwin and Duranti, 1992). The influence of contextual factors in the performance of daily living and mobility activities by children with CP has been demonstrated in the literature. Tseng, Chen, Shieh, Lu, and Huang (2011) reported that the presence of siblings, parental marital status, socioeconomical level, and stress levels of caregivers, influenced the functional performance of children with CP in self-care activities. The mobility of children with CP in an optimized environment and in their natural environment is also influenced by the individual’s interactions with his or her context. The choice of child’s mobility methods (e.g. walking or using wheelchair) (Tieman, Palisano, Gracely, and Rosenbaum, 2007), as well as the use of assisting devices (Huang, Sugden, and Beveridge, 2009), varies according to contextual features (e.g. surfaces, distances, and social expectations), revealing an interdependence between children’s actions and their contexts. Some authors have emphasized the importance of analyzing contextual features to help understand hand use in individuals with hemiparetic CP (Skold, Josephsson, and Eliasson, 2004). In a qualitative study, Skold, Josephsson, and Eliasson (2004) explored the perception of young adults with spastic hemiparesis in planning strategies to perform tasks that require bimanual use. The implementation of strategies to meet functional demands resulted from careful evaluation of the available options in specific situations, as well as the negative consequences that participants could tolerate. Participants attributed their difficulties in bimanual activities to the need for planning, continued concentration during the activity, the 44
demands for extra time, and increased effort or compensation by other body parts. The authors also reported the perceptions of participants during the planning and performance of daily living activities, the strategies used to meet the activity demands, and the negative consequences associated with their difficulties in bimanual activities due to their impairments. Current understanding supports the argument that the development and use of action strategies in bimanual activities are related to the demands of the individualin-context unit. As the routines and demands of a therapeutic setting are distinct from those of other settings (such as home or school), and considering that performance is context-specific, the understanding of mechanisms underlying hand use in children with CP may elucidate the influence of contextual factors on functioning. The purpose of this study was to explore the physical, attitudinal, and assistive characteristics that enable and/or hinder hand use by children with spastic hemiparesis CP, at home and therapeutic settings.
Method Study design This is a descriptive qualitative study. As children’s actions occur in various places and environments, we chose to investigate the influence of home and clinical settings structure in fostering and/or hindering children with CP hand use in functional activities. Children and their families were observed during daily routines at home, as well as children and therapists during occupational therapy sessions. After the observations, we conducted semi-structured interviews with caregivers and therapists.
Participants Seven children were selected from Associação Mineira de Reabilitação, a local rehabilitation center in Belo Horizonte, Brazil. Selection criteria were: (1) children between the ages of 4 to 12 years with medical diagnosis of spastic hemiparesis CP; (2) manual abilities classified as levels I, II, or III according to the Manual Ability Classification System (MACS) (Eliasson et al., 2006); and (3) weekly attendance at the rehabilitation center’s occupational therapy service. Children who had associated movement disorders (e.g. athetosis, corhea), mental or sensory disorders (e.g. hearing or visual impairment) were excluded. Children’s individual Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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chart report was used to identify those who met the selection criteria; they were further invited to participate in the study and no one declined the invitation. The demographic characteristics of the children (gender, age, and classification of hand function), information about the caregivers (gender and kinship to the child), and about the therapists (gender and years of professional experience) are presented in Table I. The names of the children in the study have been replaced with fictitious names in order to maintain anonymity. The study was approved by the Ethics Review Committee from the Universidade Federal de Minas Gerais, Brazil (ETIC 274/10). Caregivers, therapists, and children were contacted for participation in the study and signed informed consent form.
Procedures Observations of children’s daily routines took place during one (n = 3) or two visits (n = 4) to their home, with an average duration of 4 h while they were not in school. The choice to return to some children’s home occurred when it was not possible to observe their main daily living activities, such as grooming, eating, dressing, and playing in only one visit. Observations of occupational therapy sessions took place at the rehabilitation center over 2 sessions. The observations at home and in the clinic aimed at understanding how contextual factors (such as physical environment, interactions between children and adults, adult assistance, attitudes, and child’s behaviour) influence hand use. In the field diary, we recorded information obtained during these observations. The annotations on this filed diary comprised descriptions of children’s and adults’ actions and behaviours during the performance of daily living activities at home and
during the proposed activities in clinical setting in order to capture “child-in-activity” unit. Interviews with caregivers and therapists broadened the understanding of children’s hand use in home and clinical environments, respectively. All interviews were conducted individually at a private office in the local rehabilitation center, by the same researcher, after the observations. During the interviews, children were not present. The researcher and all participants spoke the same language (Portuguese), and the interviews had an average duration of 15–20 min. Specifically, the semistructured interviews with caregivers and occupational therapists were guided by questions about children with CP’s use of hands in their daily routine activities (i.e. How does the child perform activities that require hands use ?) as well as on the barriers and facilitators in performing these activities (i.e. Which activities are easy/difficult for the child to perform? What elements make such activities easy/difficult?), children’s strategies and reactions (i.e. How does the child deal with difficulties to perform activities that require the use of hands? How does he/she feel when he/she faces difficulties related to hand use?), and the reasons for and type of assistance provided by the caregiver or therapist (i.e. What type of assistance do you offer to the child in activities that require hand use? Why do you help him/her?). All interviews were recorded on a portable digital voice recorder and transcribed for further analysis. Interviews are considered a valuable source of rich descriptions of situations and contexts (Silverman, 2006).
Data analysis The text transcriptions from interviews and the field diary were analysed using content analysis. Specifically, content analysis seeks to understand the thoughts of
Table I. Descriptive information of the children, caregivers, and therapists participants of the study Child Child Lucas Luiza Iara Gustavo Artur Jose Juliana
Age 6 years and 9 years and 9 years and 4 years and 6 years and 5 years and 8 years and
9 months 2 months 3 months 2 months 11 months 5 months 4 months
Caregiver Gender M F F M M M F
MACS Level I II II II II III III
Therapist
Gender
Kinship to child
Gender
Professional experience
F F F F F F F
Mother Mother Grandmother Mother Grandmother Aunt Mother
F F F F F F F
3 years 20 years 4 years 20 years 5 years 20 years 20 years
Gender: F—Female; M—Male
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the subjects through the content expressed in various formats (i.e. speech, observed behaviour) (Silverman, 2006). This type of analysis uses the method of frequency deduction (e.g. repetitions in the text) and the emergence of thematic categories (Silverman, 2006). Content analysis consists of the following steps: pre-analysis of the content by using the floating reading method, formulating hypotheses and indicators, exploring the content by encoding the data into thematic units, and processing and interpreting data by categorizing elements that are similar and different (Hsieh and Shannon, 2005). Content analysis of the transcribed interviews and the observations was conducted with N-Vivo 8 software® (QRS International, 2008), a software that organizes data, searches for similarities and differences in the information, selects, excerpts, and organizes thematic categories.
Results and discussion The thematic categories drawn from observations at home and in occupational therapy sessions, as well as from the interviews with caregivers and therapists included: (1) use when needed: from consistent to nonuse of the affected extremity, (2) making decisions: choosing to use or not to use the affected extremity, (3) responsibilities with activities: from complete dependence to independent performance. The first category was further divided in two topics: child’s interest and low sense of his/her own abilities and other behavioural issues. Use when needed: from consistent to nonuse of the affected extremity The occurrence of children’s using of their affected hand in routine activities varied across settings (clinic and home). While some therapists and caregivers reported that children used their hands in bimanual tasks either constantly or occasionally, others reported sporadic or nonuse. During observations at home and in the clinic, we noted that all children spontaneously used the affected hand in some bimanual activities, especially in circumstances in which the activity could not be accomplished with only one hand. “To cut the dough, child uses a knife and fork. Puts the fork in right hand [affected hand] and grabs the knife with the left [non-affected hand].”(observation at Gustavo’s session) “He picks up colour markers. He uses the left hand [affected hand] to hold the marker and the pen lid with 46
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the right one [non-affected hand].”(observation at Lucas’ home) According to Skold et al. (2004), an individual’s success in performing daily activities depends on the relationship between one’s abilities, the demands of the activities, and the environmental characteristics. Supporting this argument, the results of the present study reveal that hand use depends not only on child’s capabilities but also on characteristic of activities and contextual factors. In the present study we observed specificities of the relationship child-activity-context that favoured or hindered child’s use of the affected hand. For example, among the facilitators, some intrinsic characteristics of the child seemed to foster the use of the affected hand, such as child’s interest, while other intrinsic characteristics seemed to contributed to his/her nonuse, such as low sense of his/her own abilities. Child’s interest: Caregivers and therapists agreed that the child’s interest was an important element related to hand use. The extent to which the activity interested the child contributed to his/her affected extremity use. “Same with yoyo. Wasn’t it his interest? The yoyo I spoke with him twice to place his fingers like this and said, “Hold the way you prefer, and then you pass, and quickly you pass. It was his interest, he’s doing it. When it’s in his interest, he does it. (Artur’s grandmother)”; “motivation, logically. Because if he is not motivated in the task, he tries to change, lingers on, he loses his concentration. So, he doesn’t want to end the activity. But if he is motivated, if it’s something he likes, he gets excited and then he automatically uses his hand actively”.(Lucas therapist) As stated above, therapists interpreted child’s interest as an indicative of his/her motivation towards the activity. Morgan, MacTurk, and Hrncir (1995) identified motivation as a psychological force that drives the individual to achieve a goal without the need for external rewards, leading him/her to engage in challenging tasks. As such, motivation for a child with CP is considered an important element supporting functional performance (Majnemer, Shevell, Law, Poulin, and Rosenbaum, 2010) at home, school, and clinical settings (Majnemer, Shevell, Law, Birnbaum, Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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Chilingaryan, Rosenbaum, et al., 2008; Yap, Majnemer, Benaroch, and Cantin, 2010). Majnemer et al. (2010) studied the influence of motivation on the functional performance of children with CP. They reported that motivated children showed fewer limitations in daily living activities and behavioural problems, with a reduced family burden. Eliasson (2005) identified motivation as a major factor influencing hand function in children with hemiparesis, suggesting that children’s interest is essential for learning new tasks. Parents and therapists refer to child’s interest, and it was further interpreted by therapists as an indication of motivation. The child’s demonstrated interest in a manual activity is certainly related to his/her motivation. However, the extent to which child’s interest captures the essence of the motivation concept, as well as the contributions of motivation to children with CP’s effective hand use, remain to be empirically investigated. Other facilitating factors reported by caregivers included characteristics of the activity (e.g. low difficulty) and the use of a neoprene glove for positioning of the child’s wrist, used by two children. The therapists also mentioned characteristics related to the child’s cognitive skills (e.g. ability to solve problems and freedom to perform the activity), contextual factors such as support and attitudes from adults (e.g. encouragement, nonprovision of physical assistance, verbal assistance), and the physical environmental structure. Low sense of his/her own abilities other behavioural issues: Factors hindering the use of the affected hand, as identified by caregivers and therapists, referred to children’s attitudes (e.g. low sense of his/her own abilities, disobedient behaviour, and lack of interest). “He doesn’t, he doesn’t do it. He thinks it’s difficult. Like, sometimes, he says, “Ah, I won’t do it because I’m disabled.” He already says this. So he thinks that it’s his problem, he sees his difficulties, so he says that he won’t be able, that it’s too difficult”. (Lucas’mother) “Sometimes the motor side is not the problem, it is more the issue of concentration, even behaviour. Sometimes it is, the activity is difficult, he comes and says “Oh, this is hard right?” And “Oh, this will not be able to do.” Already talking “Oh, more difficult, because I’ll not be able to do it.”.(Lucas’ therapist) According to Sterr, Freivogel, and Schmalohr (2002), individuals with hemiparesis who face challenges in Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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performing activities that involve use of the affected extremity tend to underestimate their skills. This leads to a discrepancy between their skill repertoire (i.e. potential) and the extent of their actual performance of daily activities. In addition, therapists also identified cognitive skills (e.g. difficulty in concentration and problem solving), high demand of the activity, and family context (e.g. lack of structured routines, high expectations) as specific factors that hindered hand use. Making decisions: choosing to use or not to use the affected extremity We identified two main groups of strategies used by children when dealing with difficulties in manual activities: requesting help from an adult and using compensations (e.g. bringing objects close to the body, readjusting objects with the unaffected hand, using broad movements and surfaces to support the prehension or stabilization of objects, not using the paretic hand). The most common strategy reported by the caregivers was the request for help. “She does that…she says “Oh mum, this I cannot do, can you do it for me?” She asks for help you know?”(Juliana’s mother) However, observations at home revealed that compensations, such as the nonuse of the paretic extremity, was the most common strategy. “He handles large and heavy toothpaste with one hand, even with difficulty does not plan to use both hands”.(observation at Joseph’s home) The therapists’ reports added by observations during the intervention sessions revealed that the main strategy contributing to the use of the affected extremity was the use of the paretic hand with compensations, bringing the objects close to the body. “The child, whenever she has difficulty handling the box or the cards, places the objects near the body”.(observation at Lucas’ occupational therapy session) Faced with daily challenges, children with hemiparesis use several strategies to seek success, varying from nonuse of affected hand, using the affected hand with posture compensations or asking for help. The type of 47
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strategy chosen involves many factors that can affect the desired outcome, such as social expectations, the activity’s specific characteristics (i.e. objects and surfaces), and personal characteristics. These strategies impact their functioning, since they require time and action planning, use of adapted objects, or increased use of other body parts for compensation (Skold, Josephsson, and Eliasson, 2004). In therapy sessions, the structuring of the environment and the mediating attitude of the therapist to engage the child in the chosen activity seems to have favoured the choice for using the affected upper extremity. In daily routine activities at home, such as bathing and dressing, requests for assistance were frequent, culminating in extensive involvement of caregivers. Responsibilities with activities: from complete dependence to independent performance Types of assistance varied across settings. As observed at home, caregivers performed some activities for the child. “To comb her hair, grandmother combs the child.”(Iara’s grandmother) In other situations, they provided physical assistance to the child, helping in the most difficult steps of the tasks. “The mother helps the child to dress his underpants, then the child puts on shorts and a shirt by himself.”(observation at Lucas’ home) On the other hand, most of the help provided by therapists during the occupational therapy sessions related to structuring and providing incentive to child’s actions, fostering shared responsibilities on the performance of activities that required affected hand use. “And I have helped in a way, yes, it’s by simplifying the steps a bit. I’m starting with the simplest, he’s already starting to cope, so we can evolve into a more difficult one, right?”(Artur’s therapist) “Therapist gives some verbal directions, occasionally to tying shoelaces, reminding a few steps.”(observation at Luiza’s occupational therapy session) According to Darlington and Rodger (2006), the family plays a major role in assisting a child’s occupational 48
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performance. By establishing routines, parents can create opportunities for practicing and developing necessary skills (Kellegrew, 2000). However, parents of children with hemiparesis may feel unable to provide these opportunities, since the child’s disabilities place additional demands on the family, culminating in extensive help. This undermines the child’s opportunity to perform daily activities, requiring time and effort from the caregiver (Butcher, Wind, and Bouma, 2008). Therefore, professionals must collaborate with families so that the acquisition and consolidation of the child’s emergent skills can be reinforced on a daily basis. The reasons for providing help also differed between therapists and caregivers. Therapists indicated helping the children in order to encourage them to undertake activities, which was corroborated with occupational therapy sessions observations. “She shows how to open the box that has a lock that needs to be pressed, but the child has difficulty. The therapist then begins to open the box and he continues.”(observation at Lucas’ occupational therapy session) “It’s because, it depends on the day and activity. Usually, it is for him to feel more motivated. So if it’s the beginning, I give this kind of help today to get him motivated into the activity.”(Lucas’therapist) At the therapeutic setting, often considered an optimized context, the therapist provided assistance because of the child’s motor and behavioural difficulties, aiming to encourage and engage the child in the activity. According to Eliasson (2005), one of the important prerequisites in treatment planning is the therapist’s skill to analyse the children’s ability to use their hands and compare these abilities with the complexity of the task. Such actions can result in the provision of activities that are challenging to the child, but still ensure success in performance. In this sense, the therapists chose to position children’s upper extremity and/or to guide their movements, as well as to assist them with specific steps (e.g. more difficult) of the task, thereby prioritizing the use of hands in the sessions. Actions focused on improving the child’s tasks performance in the clinical setting did not, however, guarantee transfer to the home environment, as in the latter, similar activities of daily living were performed with extensive help from the caregivers. Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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Caregivers attributed the reason for providing assistance to children’s disobedient behaviour, “Grandmother calls the child and she pretends not to hear. Places pillow over the head. Grandma pulls the child to take a shower.”(observation at Iara’s home), time constraints, “give [bath]. Him. I take the sponge and … because bathing is a rush because we get home late, we wake up and already don’t have much time.(Gustavo’s mother)” and because they are used to help children with their daily routine at home. “I put his shoes on. {Why?} Don’t know, I think it’s because I’ve become used to it.”(Artur’s grandmother) Kellegrew (2000) argue that environmental factors modify the practices and goals of families’ self-care routines; time was further considered as an important element for the provision of assistance to children with disabilities by their caregivers. Children who are less competent in performing self-care activities or receive fewer opportunities to independently perform such activities, do so by demanding a longer time to perform effectively (Kellegrew, 2000). Thus, provision of additional assistance and decreased engagement by children with disabilities in their daily routine is often attributed to reduce the need for extra time. Through observations at home, it seems that the time constraints are also related to the lack of structuring of the child’s daily routine, often because parents do not provide enough time for children’s performance. Moreover, issues related to the child’s disobedient behaviour, a common condition in those with hemiparesis (Butcher, Wind, and Bouma, 2008), may contribute to increased stress levels of caregivers, reflecting their difficulty in dealing with the child and culminating in extensive assistance (Kellegrew, 2000). Faced with the child’s motor impairments and his/her disobedient behaviour, caregivers offer extensive help, often performing the activity that the child could allegedly contribute. This action ends up reinforcing the child’s perception of low effectiveness and their choice of requesting help from the adult, when faced with a functional challenge. The information from the interviews complemented by the observations at home and at the clinic revealed specific differences in the structuring of each setting. The gap between what children with CP are capable Occup. Ther. Int. 22 (2015) 43–50 © 2014 John Wiley & Sons, Ltd.
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of performing in the clinical setting and what they accomplished at home is revealed by the specific perceptions of caregivers and therapists about the children’s use of their hands. Although parents and therapists of children with hemiparesis expect they use the paretic upper extremity more often and in a more qualified way (Skold, Josephsson, Fitinghoff and Eliasson, 2007), their specific strategies to foster such use and their provision of assistance reveal the complex interplay between the child and the demands from each context. It is important that rehabilitation professionals recognize specificities of each context, so as to maximize the child’s ability and promote improved engagement in daily routine. Such actions should not only focus on the skills needed to use the hands but also on structuring the routines of the children and their families and in recognizing the personal and environmental factors which may present as barriers or as facilitators of their performance (Rosenberg, Jarus, Bart, and Ratzon, 2011). The observations were an important source of information on the use of the affected hand, strategies chosen by the children when dealing with difficulties, and assistance provided by adults. Through interviews with caregivers and therapists, it was possible to describe the elements from household and clinical settings that impact on the use of hands by children with hemiparetic CP. However, one limitation of the present study was that it did not include the perceptions of the children as important actors of this phenomenon, thus, our analyses were based solely on interviews with adults and on direct observations. The reason for not conducting interviews with children was due to their difficulties in verbally expressing abstract concepts; their age range could have interfered with their verbal elaboration.
Conclusion The use of hands by children with spastic hemiparesis is embedded in the individual–activity–context interplay. The discrepancy between the actions of caregivers and therapists, the main elements of the home and clinical environments, reveals the specificities of these contexts, facilitating or hindering the use of hands in daily routine activities, choice of strategy, and reactions of children to the anticipation of challenging experiences. Future studies should focus on investigating the relationship between the identified facilitators and improvements in children with CP’s effective hand use in home and clinical settings. 49
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Acknowledgements We thank families and therapists from Associação Mineira de Reabilitação who agreed to participate in the study. Support was provided by research grants and scholarships from two Brazilian funding agencies, National Council for Scientific and Technological Development (CNPq) and Foundation for Research Support of Minas Gerais state (FAPEMIG). REFERENCES Arner M, Eliasson AC, Nicklasson S, & Sommerstein K (2008). Hand function in cerebral palsy. Report of 367 children in a population-based longitudinal health care program. Journal of Hand Surgery 33: 1337–1347. doi: 10.1016/j.jhsa.2008.02.032. Butcher PR, Wind T, Bouma A (2008). Parenting stress in mothers and fathers of a child with a hemiparesis: sources of stress, intervening factors and long-term expressions of stress. Child: Care, Health & Development 34: 530–541. doi: 10.1111/j.1365-2214.2008.00842.x. Darlington Y, Rodger S (2006). Families and children’s occupational performance. In: Rodger S, Ziviani J (eds). Occupational therapy for children: understanding children’s occupations and enabling participation (pp. 22–40). Carlton: Blackwell Publishing. Eliasson AC (2005). Improving the use of hands in daily living activities: aspects of treatment of children with cerebral palsy. Physical & Occupational Therapy in Pediatrics 25: 37–60. Eliasson AC, Krumlinde-Sundholm L, Rosblad B, Beckung E, Arner M, Ohrvall AM, Rosenbaum P (2006). The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Developmental Medicine & Child Neurology 48: 549–554. Gannotti M (2006). Eco-cultural frameworks and child disability: a case study from Puerto Rico. Physiotherapy: Theory & Practice 22: 137–151. Goodwin C, Duranti A (1992). Rethinking context: an introduction. In: Duranti A, & Goodwin C (eds). Rethinking context: language as an interactive phenomenon (pp. 1–42). Cambridge: Cambridge University Press. Hsieh HF, Shannon SE (2005). Three approaches to qualitative content analysis. Qualitative Health Research 15: 1277–1288. Huang J, Sugden D, Beveridge S (2009). Assistive devices and cerebral palsy: the use of assistive devices at school by children with cerebral palsy. Child: Care, Health & Development 35: 698–708. Kellegrew DH (2000). Constructing daily routines: a qualitative examination of mothers with young children 50
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