Context therapy: a new intervention approach for

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Manualized therapies ensure the specificity of intervention approaches for .... that parents' per- ceptions of readiness in their children may be the best indica-.
DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY

ORIGINAL ARTICLE

Context therapy: a new intervention approach for children with cerebral palsy JOHANNA DARRAH 1 | MARY C LAW 2 | NANCY POLLOCK 2 | BRENDA WILSON 3 | DIANNE J RUSSELL 2

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STEPHEN D WALTER 4 | PETER ROSENBAUM 5 | BARB GALUPPI 6 1 Department of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, AB. 2 School of Rehabilitation Science and CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON. 3 Research Excellence Support Team, Alberta Health Services, Calgary, AB. 4 Department of Clinical Epidemiology and Biostatistics and CanChild Centre for Childhood Disability Research, Hamilton, ON. 5 Department of Pediatrics McMaster University and CanChild Centre for Childhood Disability Research, Hamilton. 6 CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada. Correspondence to Dr Johanna Darrah at 2-50 Corbett Hall, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, AB T6G 2G4, Canada. E-mail: [email protected] This article is commented on by Carlberg. To view this paper visit http://dx.doi.org/10.1111/j.1469-8749.2011.03979.x.

PUBLICATION DATA

AIM To describe the development of context therapy, a new intervention approach designed for a

Accepted for publication 28th January 2011. Published online.

METHOD Therapists were trained to change task and environmental factors to achieve parent-

randomized controlled trial. identified functional goals for children with cerebral palsy. Therapists did not provide any remediation strategies to change the abilities of the child. Theoretical constructs were developed using dynamic systems theory and the principles of family-centered care. A primary therapist model was used. A three-step intervention strategy was developed. RESULTS Therapists adhered to the treatment protocol. Parents participated in the development of both functional goals and intervention strategies. INTERPRETATION A therapy approach focusing on changing the task and the environment rather than children’s impairments can be a viable treatment strategy and merits further investigation. The detailed description of the context therapy approach allows replication by both researchers and clinicians. Such intervention descriptions are an important methodological consideration in rehabilitation research.

Both the number and rigor of efficacy studies to evaluate intervention techniques used with children with cerebral palsy (CP) have improved in the past decade.1 Whyte and Hart2 identified three important methodological issues that researchers need to consider when designing effective intervention studies: (1) defining the population, (2) choosing appropriate outcome measures, and (3) describing the intervention in enough detail that other researchers and clinicians can replicate it. Researchers are increasingly aware of the importance of characterizing children in terms of their functional abilities and of considering the effect of the intervention in children of differing ability levels.3 The psychometric rigor and evidence of responsiveness of pediatric outcome measures have both improved in the past decade.4 However, descriptions of specific interventions remain the least developed aspect of rehabilitation intervention studies,2,5,6 and systematic reviews of specific interventions report this as a weakness of studies.7–9 Detailed treatment protocols have been used and discussed in the literature on behavioral psychotherapy for over 25 years.10 In the field of psychotherapy, these manual-based therapies or ‘manualized therapies’ require a clinician to match clients with a specific diagnosis to a treatment package that

has been developed for that disorder.11 Characteristics of effective treatment protocols or manualized therapies include a theoretical justification for the treatment design, detailed descriptions of the intended patients, the intervention intensity, duration and delivery, and a description of the training and monitoring of persons providing the intervention.2,6 Advocates of manualized therapies claim that they are efficient and reduce the ‘flawed idiosyncratic decision-making of individual therapists’ (Eifert et al.,11 p. 500). For research purposes, a standardized description of an intervention increases the internal validity of outcome studies, allowing systematic evaluation of treatments across settings and sites. Critics of a manualized therapy approach, however, caution that it could encourage a ‘cookbook’ intervention and suggest that adequate flexibility must be included in the instructions to accommodate individual situations.12 Manualized therapy approaches are appearing in pediatric rehabilitation for children with autism13,14 but they are not common practice for the management of children with CP.15 Manualized therapies ensure the specificity of intervention approaches for children with motor disabilities, both in research studies and in the delivery of intervention approaches in clinical practice. This paper describes the ‘context therapy’

ª The Authors. Developmental Medicine & Child Neurology ª 2011 Mac Keith Press

DOI: 10.1111/j.1469-8749.2011.03959.x 1

intervention approach developed for the clinical trial described in the accompanying paper by Law et al. The theoretical rationale for the context approach, the model of service delivery, and the training procedures are described. Examples of specific intervention solutions are provided and some identified benefits and challenges of introducing this intervention are discussed. Broad concepts of the context therapy approach have been described previously in a published treatment protocol,16 but this paper provides detailed information about the training procedures and intervention guidelines. It identifies the ‘active’ ingredients2,6 of the context therapy approach, allowing clinicians and researchers to replicate it.

CONTEXT THERAPY APPROACH Table I summarizes the components of the context therapy approach. Although context therapy shares concepts described in other ‘functional’, ‘task-oriented’, or ‘activity-focused’ interventions,17–22 such as involvement of parents, identification of functional goals, and a ‘top-down’ activity-based approach to assessment and intervention,23 a unique aspect of the context

What this paper adds • Detailed descriptions of interventions are a necessary part of research and knowledge translation. • Key ingredients of intervention approaches need to be identified and systematically evaluated. • Therapy that focuses on changing factors in the task and environment rather than on remediating a child's motor impairment is a viable treatment.

therapy approach is that therapists were explicitly trained to change only the characteristics of the task and ⁄ or environment and not to try to change the child’s impairments. Although other functional approaches acknowledge the influence of the environment on a child’s motor successes and task completion, they still focus on changing the abilities of child. In the initial development of the context approach,24 we allowed therapists to include remediation of the child’s abilities as part of the intervention. From this pilot work, we learned that therapists preferred to change the child’s abilities rather than to adapt the task or environment. Thus, in this trial, we became more prescriptive in training therapists to focus on changing the task or the environment and not the child.

Table I: Context therapy approach

Theory Dynamic systems

Family centered

Service delivery model

Principles

Implementation in context therapy

Success at functional goal depends on interaction of factors within child, task and environment subsystems Collaborative relationship between family and health-care providers to identify goals and intervention strategies Primary therapist

Emphasis on changing task and environment rather than child

Natural environment Goal ⁄ task identification Assessment

Intervention

Parent involvement Functionally relevant goals Include families Strength-based Focus on identifying constraints and facilitators related to task and environment Include families Work at functional goals Strategies target task ⁄ environment, not remediation of child ’Fail quickly’ Episodic interventions Think outside the box

Therapist training

Provide rationale and theory Provide process Provide support

Intervention monitoring

Evaluate process early Ensure fidelity of treatment Documentation of process

2 Developmental Medicine & Child Neurology 2011

Family involvement incorporated into assessment and intervention protocol and not left to individual therapist discretion One therapist provides intervention (other therapists available for consultation) Assessment and intervention ideally occurs in natural environment directly related to identified goal or task Therapists trained to use the Canadian Occupational Performance Measure With family, observe and videotape child’s current performance of each identified goal With family, identify factors in task ⁄ environment that are supporting or hindering child’s success at goal Families identify strategies with therapists Families demonstrate present strategies; build from there Remediation of impairments not allowed (e.g. passive stretching, specific muscle strengthening, specific motor control strategies) Expect success quickly: if not successful in 2wks re-evaluate strategies Try short intense periods of intervention followed by practice times for consolidation by family and child Innovation encouraged Do not assume hierarchical preference of movement solutions Atypical (innovative) patterns of movement accepted Training included theory and research background Three-step guidelines for goals, assessment, and intervention Support from colleagues and research team Conference calls with therapists together, personal telephone and e-mail follow-up Therapists sent videotapes of initial assessment to research team Therapist sent video of intervention process; evaluated by research team for fidelity of treatment and feedback provided Therapists and families kept logbooks of intervention process; evaluated by research team to ensure fidelity of treatment

Theoretical frameworks We developed the context therapy approach using tenets of the dynamic systems theory as it is applied to motor development.25,26 Dynamic systems theory posits that motor behaviors are organized around functional tasks or goals and that the specific motor solution is influenced by the spontaneous interaction of variables from three sources: child characteristics, task demands, and environmental influences. Child characteristics represent not only the traditional physical impairments considered in the rehabilitation of children with CP (e.g. muscle tone, range of motion, balance) but also non-physical characteristics such as motivation, attention, and cognition. Examples of task characteristics (what the child is trying to do) are the shape, size, and weight of a ball for the task of throwing, or the choice of the size, shape, or texture of a writing instrument for the task of printing, or consideration of alternative solutions such as a computer or label maker. Environmental considerations are the identification of physical, social, and attitudinal influences that represent barriers to or facilitators of successful completion of the identified task or goal. Examples include physical accessibility, availability of assistants, and the attitudes of persons within the child’s environment. Dynamic systems theory also stresses the importance of trying to encourage new motor behaviors when a child starts to experiment with different motor skills; this is referred to in dynamic systems theory as being ‘in transition’ for new motor skills. Most of the research on transition has involved kinematic analyses of typically developing infants’ motor behaviors. Our pilot work to identify the parameters of transition in children with motor disabilities suggested that parents’ perceptions of readiness in their children may be the best indicator of a developmental motor transition.24 We incorporated the concept of transition into the goal identification process with parents. Context therapy emphasizes changing the parameters of the task or environment rather than a focus on remediation of a child’s abilities. The assumption of this approach is that changes to the task and ⁄ or environment will enable the child to perform an activity that they were unable to do previously. Tenets of family-centered theory were also integrated into the development of the context therapy protocol, particularly the concept of a collaborative partnership between families and health-care providers.27 Families participated in the identification both of goals and of intervention strategies for their children. Training protocol Participating therapists in the clinical trial attended 1½ days of training. In the first half day, therapists learned about the rationale for the study and the study design. The next day, therapists in each arm of the study received specific training about how to deliver assessment and intervention in the study intervention arm to which they had been randomly assigned. The following sections describe specific attributes of the context approach that therapists learned in the context therapy training.

Primary therapist service delivery model One therapist, either an occupational therapist or physical therapist, was assigned to each child to conduct the assessment and interventions in the context arm. Other therapists or study team members could provide consultation to the therapist, but only the primary therapist interacted with the child and family. In Canada, most pediatric rehabilitation centers use an interdisciplinary approach, with therapists from different disciplines interacting directly with the child and family on different goals. The primary therapist model has been recommended for school-aged children.28 The scant research available on the primary therapist approach, from rehabilitation for adults with arthritis,29 suggests that it may improve clients’ general understanding of their condition compared with a multidisciplinary team approach. Therapists were initially uncomfortable with crossing disciplinary boundaries, but during the study they learned to consult with colleagues and work on family goals that they initially considered outside their scope of practice. Intervention protocol We designed a three-step process for the context therapy intervention: goal identification, assessment, and intervention strategies. To ensure that families were involved in the identification of goals or tasks for their child, we trained therapists to interview parents using the Canadian Occupational Performance Measure (COPM).30 This is an individualized measure used to identify activities that represent problems in the child’s daily life. In the interview, parents identified up to five priority issues for their child in the areas of self-care, productivity, and ⁄ or leisure. To identify activities ‘in transition’, we encouraged parents to focus on activities that their child was trying to do or was interested in doing but was having difficulty performing. The parents ranked the identified problems in terms of their importance, and then rated their perception of their child’s present performance and their satisfaction with that performance for each issue. The family and therapist set and prioritized goals collaboratively, based on the identified issues. Use of the COPM encouraged the development of functional goals important to the families and ensured their involvement in setting those goals. Therapists and parents were enthusiastic about the use of the COPM for goal setting, and many therapists have continued to use this measure in their regular clinical practice. For the assessment process, therapists videotaped the child’s performance on each goal identified. Ideally, the videotaping was done in the natural environment relevant to the goal (e.g. home, school, backyard), but in some instances, because of family and ⁄ or therapist constraints, the assessment was completed in the rehabilitation center. The parent and therapist watched the video together and identified factors within the task and the environment that were either helping or hindering a child’s performance. From this list, they identified factors that could be adapted or changed to achieve the goal as quickly as possible. Therapists used a strength-based

Context Therapy: A New Intervention Approach Johanna Darrah et al. 3

approach, first identifying factors within the task and environment that supported a child’s attempt to complete the identified goal before identifying task and environmental constraints. Therapists sent in their first assessment video to the research team and they received personal feedback about their goals and intervention strategies from therapists on the research team. After identifying the important task and environment factors amenable to change, the therapist and parent agreed on the intervention strategies. In many therapy approaches, specific movement patterns and strategies are the goal of treatment. In the context approach, therapists were trained to consider all movement solutions, even those traditionally thought to represent ‘abnormal’ movement patterns (e.g. W-sitting, ‘bunny-hopping’), and to build on the movement solution that the child was trying to use. Therapists asked parents to show how they were currently managing the task and to consider this as a ‘starting point’ for adaptations. Therapists were cautioned against assuming a hierarchy of ‘best solutions’, such as assuming that a child should move by crawling rather than commando creeping or that a mature pencil grasp was preferred over an immature grasp. Instead we encouraged them to find solutions that yielded success at the goal or task as quickly as possible. The therapists were taught to use a trial and error approach and to ‘fail faster’, i.e. not to wait too long for change to occur before re-evaluating the intervention strategy. The therapists were also counseled to consider an episodic approach rather than a regular intervention frequency such as once a week. We envisioned that therapists might work with a child and family intensively for a few days consecutively, find the best strategy by trial and error, and then leave the family to experiment with it independently and provide practice time for the child. The intervention period was 6 months in duration and each child was to receive 18 to 24 therapy sessions during this period. To monitor adherence or fidelity to the treatment protocol, in addition to the feedback on initial assessment videos and assessment analyses by the research team members, therapists were encouraged to telephone the research team if they needed additional consultation about a child’s goals or intervention strategies. Therapists also submitted a video of an intervention session to document their adherence to the intervention principles. All therapists kept detailed logs of their intervention sessions and the research team coded the interventions by the components of the International Classification of Functioning, Disability and Health.31

Benefits of the context approach Our experience with context therapy was positive. Therapists identified innovative solutions to parents’ concerns that resulted in a quick resolution and achievement of the goal. For example, one child had difficulty independently stepping onto her school bus because of the height of the steps. Instead of working on improving the child’s quadriceps muscle strength to climb the steps, the therapist phoned administrators in the school district, explained the 4 Developmental Medicine & Child Neurology 2011

problem, and requested a bus with steps that were less steep. The school complied and the next day the child achieved the identified goal of getting onto her school bus independently. In another situation, a parent’s goal was for her child to finger-feed himself Cheerios (breakfast cereal) independently. The therapist experimented with putting peanut butter on the tips of his fingers so that the Cheerios could stick to it. The child accomplished finger feeding in one intervention session, even though he did not have a pincer grasp. Our assumption is that with this independent practice the constraints within the child may change so that they learn to finger-feed without the peanut butter. If this is not possible, then another strategy to explore would be to modify the task so that the child can independently put the peanut butter on his fingers. With either option, specific remediation of the child’s motor abilities is not part of the intervention. The benefits of working in the child’s natural environment were striking. For example, the goal for a mother of a 3-yearold boy was for him to use the toilet independently. After assessing the layout of the bathroom, the therapist suggested that instead of standing in front of the toilet that he face the toilet sideways and use the sink vanity as a balance support. This change of position resulted in his independence in toileting immediately. The therapist reflected that without seeing the layout of the bathroom, she would automatically have ordered equipment such as a grab bar and made the solution more complicated. With many goals, a simple environmental change facilitated an immediate change in performance, to everyone’s satisfaction.

Challenges of the context approach During the study and at the two debriefing meetings after study completion, therapists shared that the context approach was most challenging with children who were more severely involved and with children who had cognitive impairments because it was sometimes challenging to identify relevant functional goals specifically focused on the child. Often the task or goal identified addressed the needs of the family (e.g. carrying, transportation, bathing); some therapists felt that these goals may not be addressing therapy needs of the child despite the fact that they were often the most pressing concerns for the parent. Similarly, some therapists reported that focusing on the task and environment was discomforting because they did not feel that it was ‘true’ therapy. Even when the results were successful and meaningful, several therapists reported that they had not done ‘therapy’ if they had not provided hands-on treatment to the child. For example, a therapist who provided strengthening exercises to a mother experiencing shoulder pain from transferring her child did not classify her intervention with the parent as therapy. Therapists were challenged to write goals that did not embed the expected movement solution and that did not focus on changing the child’s movement abilities. For example, if a parent’s goal for their child was independent mobility in the home, a therapist might assume that crawling was the best

movement option and write the goal to specify crawling. This type of goal setting with an expected movement solution excluded the exploration of other mobility options such as rolling and creeping. Providing assessment and intervention in the child’s natural environment was well received by therapists and families, but unfortunately present service delivery models were often constraining. Most therapy is center-based and logistics such as therapist travel time and working parents made it difficult to provide all therapy in the appropriate environment. A review of parent logbooks documenting other activities during the study period revealed how busy these families’ lives are. Notes of many medical appointments and multiple episodes of children’s illnesses were frequently reported. It is usually assumed by clinicians that families will welcome as much intervention as possible, but our study experience suggests this may not always be the case.

CONCLUSION We designed the context approach specifically for this clinical trial. It has not been described previously in enough detail to be replicated. We suggest that it is fundamentally different from other functional or task-oriented approaches described in the literature because we trained the therapists only to change task or environmental constraints, not child constraints. Our intent is that this detailed description will encourage clinicians and researchers to replicate the procedures. Replication by others removes investigator and therapist bias12 and strengthens evaluation of the context

approach. We are encouraged by the results of the clinical trial suggesting that the effects of the context approach were similar to the child-focused approach, which emphasized remediation of motor components represented by the ICF components of body function and structure (e.g. muscle strength, balance, range of motion). We do not believe that manualization of the context approach will result in a ‘cookbook’ intervention approach because the guidelines mandate individualized strategies for each child and family. This description of the context approach provides guidance for other health-care providers to try this approach. We welcome their feedback. ACKNOWLEDGEMENTS We thank the children and their families who participated in this research. We acknowledge the effort and support of the study coordinators, occupational therapists, physical therapists, and administrative staff at the 19 children’s rehabilitation centers and organizations in Ontario and Alberta, Canada, who participated in the study. We also sincerely thank Theresa Petrenchik and Virginia Wright for their contributions to the development of the treatment protocols, and Lisa Avery for her work on the analyses of the study. This study was supported by a grant (number R01HD044444) from the National Institutes of Health, USA. MCL holds the John and Margaret Lillie Chair in Childhood Disability Research from McMaster University. SDW holds a National Health Scientist Award from Health Canada, PR holds a Canada Research Chair from the Canadian Institutes of Health Research, and DJR receives support from the McMaster Child Health Research Institute.

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