Goal setting in paediatric rehabilitation for children with motor disabilities: a scoping review

Abstract

Objectives:

The three objectives of this scoping review were to (1) identify key conceptual/theoretical frameworks and the extent to which they are used to inform goal setting related to rehabilitation goal setting with children with motor disabilities, (2) describe research that has evaluated goal setting processes and outcomes, and (3) summarize the purposes of goal setting described in paediatric rehabilitation literature.

Methods:

The scoping review process described by Arksey and O’Malley was used to guide article selection and data extraction.

Results:

A total of 62 articles were included in the final review. While the concept of family-centered care was well represented, theoretical frameworks specific to goal setting (i.e. goal setting theory described by Locke and Latham, mastery motivation, social cognitive, personal construct, and self-determination theories) were rarely addressed. No articles reviewed addressed prominent behavior change theory. With the exception of the description of tools specifically designed for use with children, the role of the child in the goal setting process was generally absent or not well described. Few studies (n = 6) discussed the linkage between goals and intervention strategies explicitly. Only two studies in the review evaluated outcomes associated with goal setting. The primary purpose for goal setting identified in the literature was to develop goals that are meaningful to families (n = 49).

Conclusion:

The results highlight significant gaps in the literature explicating a sound theoretical basis for goal setting in paediatric rehabilitation and research evaluating the effects of goal qualities and goal setting processes on the achievement of meaningful outcomes.

Keywords

Goal setting paediatric rehabilitation scoping review

Introduction

Goal setting is considered a critical component of the rehabilitation process. In paediatric rehabilitation, collaborative goal setting is emphasized because it aligns rehabilitation strategies with the individualized goals of children and families, enacting the tenets of family-centered care.^1,2 The shift toward prioritizing participation outcomes in paediatric rehabilitation has also emphasized the importance of collaborative goal setting with parents and children since unique individual family life contexts and values shape the outcomes and rehabilitation activities that are meaningful to families.³ While most clinicians would agree that goal setting is family-centered and a fundamental element of rehabilitation, there is evidence that formalized goal setting processes are inconsistently implemented in clinical practice^4,5 and that parents and, in particular, children are not always optimally engaged in the process.⁶ Implementation challenges highlight the need for a strong research foundation to support effective goal setting practices that engage children and families in identifying meaningful goals that inform therapy and improve outcomes.

While rationale for goal setting in rehabilitation is strong, it is largely based on pragmatic reasoning and less on a strong theoretical foundation,⁷ particularly in paediatrics.⁸ A theoretical framework has been developed for adult rehabilitation;⁷ however, the increased engagement of families and developmental changes in child autonomy in paediatrics necessitates a theoretical framework specific to children and youth. Furthermore, research to support relationships between goal setting and improved child and parent engagement and outcomes is lacking.¹ With the exception of a review focussed on individualized goal setting tools,⁹ no structured reviews on the theoretical basis and process aspects of goal setting in paediatric rehabilitation have been published.

A summary of current literature on goal setting in paediatric rehabilitation is needed to identify gaps in relation to goal setting in research and practice and to provide the basis for theory advancement to support goal setting process and evaluation. The overarching objectives of this scoping review were to (1) identify key conceptual/theoretical frameworks and the extent to which they are used to inform goal setting related to rehabilitation with children with motor disabilities, (2) describe research that has evaluated processes and outcomes related to goal setting, and (3) summarize the purposes of goal setting described in the paediatric rehabilitation literature.

Methods

The five steps outlined by Arksey and O’Malley¹⁰ were used to conduct the review.

Article identification and selection

CINAHL, EMBASE, Medline, Scopus, Cochrane Database of Systematic Reviews, and Web of Science were searched for relevant records with the guidance of a medical librarian. The search strategy is provided in Supplementary Appendix 1. Records were not limited to any particular research methodology; all literature relevant to goal setting (i.e. research, review, and discussion articles) were included. Articles were included if they met the following inclusion criteria:

Addressed rehabilitation with children with motor disabilities;

Relevant to goal setting in a paediatric rehabilitation context;

Published in English;

Published in a peer reviewed journal between 1 January 1995 and 31 December 2017.

Studies were excluded if the authors used goal setting tools as outcome measures to evaluate effectiveness of interventions since our intent was to focus on the papers that directly addressed goal setting theory and practices. Articles were limited to those that discussed goal setting in paediatric rehabilitation generally or specifically discussed goal setting with children with physical or motor disabilities (e.g. cerebral palsy, Down syndrome, developmental coordination disorder, muscular dystrophy, and congenital limb deficiency). Articles that specifically discussed goal setting with children with neurobehavioral diagnoses such as autism were excluded because we anticipated that goal setting aims and strategies may differ.

The date range was selected because a preliminary search of the literature revealed no substantive articles related to goal setting prior to 1995.

L.P.-W. independently reviewed the titles and abstracts of the articles identified in the search and excluded duplicates and articles that were not relevant based on the eligibility criteria (see Figure 1 for a detailed flowchart of the selection and review process). The reviewers hand searched article reference lists for additional relevant articles, resulting in three additional articles for review. Full texts of selected articles were independently reviewed for relevance by L.P.-W. and a research assistant. The two reviewers met to discuss discrepancies and reach consensus on articles selected for inclusion. Discrepancies were resolved by a third rater (S.K.P.).

Figure 1.

Scoping review flowchart.

Data extraction

The following data were extracted from each article: basic descriptive information (i.e. authors, title, year of publication, and journal), research objectives/questions, research design, theoretical/conceptual frameworks cited, extent to which theory was used, key processes related to goal setting, outcomes evaluated (and results), and the purpose of goal setting (either implicit or explicit). A scale was developed to categorize the extent theory related to goal setting was used throughout the article: 0 = no reference to theory relevant to goal setting, 1 = some use of theory (typically limited to the introduction/background), and 2 = theory described in depth and integrated throughout the article. Purposes for goal setting were classified using the four purposes of rehabilitation goal setting identified by Levack et al.:¹¹ (1) improving rehabilitation outcomes, (2) enhancing patient autonomy, (3) evaluating outcomes, and (4) responding to contractual, legislative, or professional requirements. Two additional categories were added to reflect the literature in paediatrics: (5) collaboration with families to ensure meaningful goals and (6) enhancing team collaboration.

Quantitative and mixed methods research articles were grouped and further reviewed for information on goal setting processes and outcomes if the effects of goal setting were specifically evaluated. Descriptions of the following aspects of goal setting process were extracted: (1) role of the child, (2) role of the parent, (3) role of the therapist, (4) goal setting tools used, (5) strategies to ensure linkages between goals and intervention strategies, and (6) if and how goals were revisited during the intervention process. Quantitative articles were excluded from this part of the analysis if the authors reported on aggregate data or chart reviews and therefore could not be expected to report on specific goal setting processes used by therapists and families. Qualitative and mixed methods research articles were reviewed for parent, child, and therapist perspectives on goal setting processes and outcomes.

L.P.-W. and a research assistant independently extracted data from the articles and compared and discussed ratings to reach consensus. Discrepancies were resolved by a third rater (S.K.P.). The team participated in regular meetings to discuss emergent insights and results.

Results

The 62 articles included in the final review are listed in Supplementary Appendix 2. The majority of the included articles were quantitative research articles (n = 35).^4,5,12–44 Eight studies were qualitative^6,45–51 and six used mixed methods.^52–57 The remaining 13 included articles were discussion articles or reviews.^8,9,58–68 The results of the review are presented according to the objectives of the review:

Which theoretical or conceptual frameworks are used to inform goal setting practices and to what extent are those frameworks used in the goal setting literature?

Six conceptual or theoretical frameworks were identified in the paediatric rehabilitation literature on goal setting: family-centered care, goal setting theory as described by Locke and Latham,⁶⁹ social cognitive theory (including self-efficacy theory and self-regulation theory), mastery motivation, personal construct theory, and self-determination theory. A summary of the conceptual and theoretical frameworks used is provided in Table 1. By far, the most prominent framework cited was family-centered care (n = 33). However, reference to the concepts of family-centered care was generally limited to brief reference to the principles; only nine of these articles demonstrated integration of family-centered concepts throughout the article.

Table 1.

Conceptual or theoretical frameworks cited.

Theoretical framework	Articles
Family-centered service Some use of theory (n = 24) Theory integrated (n = 9)	Siebes et al.,³⁷ Stefánsdóttir and Egilson,⁵⁶ Vroland-Nordstrand and Krumlinde-Sundholm,³³ McGavin,¹⁴ Nijhuis et al.,¹⁷ Østensjø et al.,²⁰ Chiarello et al.,²⁷ Pollock et al.,³¹ Missiuna et al.,³⁴ Jeglinsky et al.,³⁵ Øien et al.,⁴⁷ An et al.,⁵² Cermak and Bissell,²⁴ King et al.,⁶⁷ Darrah et al.,⁴ Cusick et al.,²³ Nijhuis et al.,⁶² Kolehmainen et al.,⁴⁵ Palisano,⁶¹ Wright and Majnemer,⁶⁴ Lowing et al.,¹⁸ Missiuna and Pollock,³⁶ An et al.,⁴¹ Smart et al.,⁵⁰ Jeglinsky et al.,⁴⁶ Wiart et al.,⁶ An and Palisano,⁶⁵ Brewer et al.,⁸ Poulsen et al.,⁶³ Siebes et al.,³⁹ Palisano et al.,⁶⁶ Baldwin et al.,⁵⁸ Forsingdal et al.,⁴⁹
Goal setting theory Some use of theory (n = 7) Theory integrated (n = 1)	Tam et al.,⁹ Østensjø et al.,²⁰ Vroland-Nordstrand and Krumlinde-Sundholm,³³ Missiuna et al.,³⁴ Øien et al.,⁴⁷ Jeglinsky et al.,⁴⁶ Robertson et al.⁴³ Brewer et al.⁸
Social cognitive theory (self-efficacy) Some use of theory (n = 7) Theory integrated (n = 3)	Baldwin et al.,⁵⁸ Kolehmainen et al.,⁴⁵ Cermak and Bissell,²⁴ Wright and Majnemer,⁶⁴ Missiuna and Pollock,³⁶ Vroland-Nordstrand et al.,¹⁵ King et al.⁵¹ Missiuna et al.,³⁴ Brewer et al.,⁸ Poulsen et al.⁶³
Social cognitive theory (self-regulation) Some use of theory (n = 2) Theory integrated (n = 1)	Cermak and Bissell,²⁴ Kolehmainen et al.⁴⁵ Brewer et al.⁸
Mastery motivation Some use of theory (n = 2)	Missiuna et al.,³⁴ Wright and Majnemer⁶⁴
Personal construct theory Theory integrated (n = 1)	Brewer et al.⁸
Self-determination theory Some use of theory (n = 2) Theory integrated (n = 1)	Poulsen et al.,⁶³ King et al.⁵¹ Smart et al.⁵⁰

Social cognitive theory (n = 13) and Locke and Latham’s⁶⁹ goal setting theory (n = 8) have garnered some attention in regard to application to goal setting in paediatric rehabilitation. However, with three exceptions, ^8,34,63 theoretical depth was lacking. Reference to mastery motivation (n = 2), personal construct theory (n = 1), and self-determination theory (n = 3) was limited to six articles.^{8,34,50,51,63,64} No articles addressed prominent theory related to behavior change such as the Health Action Process Approach.⁷⁰ Overall, the theoretical depth of this body of literature was weak. While family-centered care was fairly well represented, substantive conceptual or theoretical frameworks specific to goal setting were rarely mentioned in the literature and were not used to guide goal setting processes.

2. What is described in the literature about goal setting processes and outcomes?

12 of the 41 quantitative and mixed methods articles were excluded from this part of the analysis because the authors reported on aggregate data or chart reviews and therefore could not be expected to report on specific goal setting processes used by therapists and families. Therefore, 29 quantitative and mixed methods articles were reviewed for information related to goal setting processes. In addition, 14 articles (8 qualitative and 6 mixed methods studies) were reviewed for child, parent, or therapists’ perspectives on goal setting processes.

Role of the child, parent, and therapist

With the exception of brief descriptions of tools such as the Perceived Efficacy and Goal Setting System,^{15,16,34,36,57} the Canadian Occupational Performance Measure completed with parents and/or children,^14,28 and the Here is How I Write Tool,²⁴ the role of the child was either unspecified or described using general statements such as “completed with families.” While some studies were not designed to include the child in goal setting (e.g. the purpose of the study was to identify therapist or parent goals), this review suggests that the role of children in setting their own rehabilitation goals is not well articulated in the paediatric rehabilitation literature.

The role of parents in the goal setting process is articulated to a greater extent than children, with their participation most often described as collaborating with therapists using individualized goal setting tools such as the Canadian Occupational Performance Measure,^{14,15,20,21,23,27,28,30,31,41,43,52,71} and Goal Attainment Scaling^20,23,32,42 or the Canadian Occupational Performance Measure and Goal Attainment Scaling combined.^20,23 Combined use of these tools generally involved use of the Canadian Occupational Performance Measure for identification of meaningful family goals followed by the use of Goal Attainment Scaling to operationalize more specific rehabilitation goals. The Canadian Occupational Performance Measure requires more involvement from the parent and/or child, and Goal Attainment Scaling is generally more therapist driven.⁹ One paper⁵² described a scaling process to facilitate Canadian Occupational Performance Measure performance ratings: Therapists discuss with parents how they would define ratings (i.e. scores of 1–10) in relation to their goals. This process was considered difficult to implement but potentially useful.

Two papers^5,17 discussed the goal setting process implemented in the Netherlands, the Rehabilitation Activity Profile for Children. In this process, families identify their rehabilitation needs, the rehabilitation/education teams identify principal problems, and then families and service teams collaboratively formulate principal goals that drive rehabilitation interventions. With the exception of the use of formalized tools, for which processes are described in tool manuals, roles of parents are generally not well described or are unspecified. Therapist roles are also primarily characterized by the administration of formalized goal setting tools (i.e. Rehabilitation Activities Profile for Children, Canadian Occupational Performance Measure, Here’s How I Write Tool, Goal Attainment Scaling, and Perceived Efficacy and Goal Setting System).^{5,14,15,18,20,21,23,24,27,29,34,36,38,41–43,52,53,57,71}

The qualitative studies provided insight into parent and therapist experiences with goal setting processes. In the qualitative component of a mixed methods case report with two mothers of children with cerebral palsy,⁵² therapists perceived that goals grounded in meaningful conversations with mothers resulted in better goals compared to goals based on therapist-led perceptions of what was important for the child. The importance of a collaborative approach was identified; parents and therapists perceived cocreation of goals led to a shared understanding, enhanced parent/therapist collaboration, and better child outcomes. Furthermore, three qualitative studies that provided insight into the experiences of parents in the goal setting process^6,47,49 reported that parents desired a flexible goal setting process, with some parents appreciating more therapist input into goals to capitalize on their clinical knowledge and experience. Notably, there were no qualitative studies that investigated the child’s perspective on goal setting processes or outcomes.

Linkage between goals and intervention strategies

About 10 of the 29 studies^{14,16,21,24,27,28,34,36,38,55} did not address the linkage between goals and interventions as this was beyond the scope of the research. Of the remaining 19 studies, only six^{18,29–32,52} explicitly addressed the direct link between identified goals and therapy activities. Four studies^15,18,32,52 described processes for revisiting goals throughout therapy as a means to ensure focus and engagement in rehabilitation including ongoing reflection with parents on goal progress,^15,52 regular communication strategies such as communication books and team meetings,^18,32 using pictures so that the goals are more understandable for the child,¹⁸ and discussion of goals during home visits.³²

Outcomes of goal setting

Only two studies included in this review evaluated outcomes associated with goal setting. Kolehmainen et al.⁵⁴ evaluated the implementation of a goal setting process in occupational therapy services in Scotland and reported that therapist uptake resulted in a shared rationale for decision-making among therapists, increased clarity in service provision (i.e. greater focus on goals), and improved interactions with schools and families. Length of treatment decreased by an average of two months following implementation, despite modest uptake of the process among therapists. Lowing et al.¹⁸ compared the effects of goal-directed functional therapy and activity-focussed therapy with preschool children with cerebral palsy. Limited conclusions about the specific contributions of goal-directed therapy can be made from this study since there were other differences in therapeutic approaches between the groups, including a greater emphasis on parent education and engagement in the goal-directed therapy group.

3. What are the identified purposes of goal setting in the paediatric rehabilitation research and practice?

Purposes of goal setting either implied or explicitly stated in the 62 articles are presented in Table 2. Consistent with the theoretical emphasis on family-centered care, the primary purpose was identifying goals that are meaningful to families (n = 48), followed by evaluating outcomes (n = 30), and improving rehabilitation outcomes (n = 28). Responding to contractual or professional requirements (n = 4), enhancing patient autonomy (n = 6) and team collaboration (n = 5) were infrequently identified as purposes for goal setting.

Table 2.

Purpose of goal setting.

Purpose	Articles
Improve rehabilitation outcomes (n = 28)	Berman et al.,¹³ Nijhuis et al.,⁵ Vroland-Nordstrand and Krumlinde-Sundholm,³³ Lowing et al.,¹⁸ Østensjø et al.,²⁰ Franki et al.,²⁵ McConlogue and Quinn,²⁶ Missiuna and Pollock,³⁶ Wright and Majnemer,⁶⁴ An et al.,⁵² Øien et al.,⁴⁷ Poulsen et al.,⁶³ An and Palisano,⁶⁵ Pollock et al.,³¹ Lowing et al.,²⁹ Palisano et al.,⁶⁶ Lowing et al.,³² Jeglinsky,⁴⁶ Missiuna et al.,³⁴ Cermak and Bissel,²⁴ Vroland-Nordstrand et al.,¹⁵ Engelen et al.,¹⁹ Steenbeek et al.,²² Kolehmainen et al.,⁴⁵ Smart et al.,⁵⁰ An et al.,⁴¹ King et al.,⁵¹ Costa et al.⁵⁷
Enhance patient autonomy (n = 6)	Wright and Majnemer,⁶⁴ An and Palisano,⁶⁵ Palisano,⁶⁶ Lowing et al.,¹⁸ Smart et al.,⁵⁰ King et al.⁵¹
Evaluate outcomes (n = 30)	McGavin,¹⁴ Nijhuis et al.,⁵ Vroland-Nordstrand et al.,¹⁵ Lowing et al.,¹⁸ Engelen et al.,¹⁹ Østensjø et al.,²⁰ Steenbeek et al.,³⁸ An and Palisano,⁶⁵ Siebes et al.,³⁷ King et al.,⁶⁰ King et al.,⁶⁷ Wright and Majnemer,⁶⁴ Lowing et al.,²⁹ Poulsen et al.,⁶³ Tam et al.,⁹ McConlogue and Quinn,²⁶ Cusick et al.,²¹ Cusick et al.,²³ Ӧdman and Ӧberg,⁷¹ An et al.,⁵² Siebes et al.,³⁹ Palisano et al.,⁶⁶ McDougall and Wright,⁵⁹ Pollock et al.,³¹ Palisano⁶¹ Smart et al.,⁵⁰ Krasny-Pacini et al.,⁴² An et al.,⁴¹ King et al.,⁵¹ Costa et al.⁵⁷
Respond to contractual, legislative or professional requirements (n = 4)	Nijhuis et al.,¹⁷ Nijhuis et al.,⁵ McConlogue and Quinn,²⁶ Smart et al.⁵⁰
Identify goals that are meaningful to families (n = 48)	McGavin,¹⁴ Nijhuis et al.,⁵ Vroland-Nordstrand et al.,¹⁵ Ӧdman and Ӧberg,⁷¹ Vroland-Nordstrand and Krumlinde-Sundholm,³³ Nijhuis et al.,¹⁷ Darrah et al.,⁴ Engelen et al.,¹⁹ Østensjø et al.,²⁰ Steenbeek et al.,³⁸ Cermak and Bissell²⁴ Lowing et al.,²⁹ Brandão et al.,³⁰ Pollock et al.,³¹ Missiuna et al.,³⁴ Missiuna and Pollock,³⁶ Jeglinsky et al.,³⁵ Jeglinsky et al.,⁴⁶ Wiart et al.,⁶ An et al.,⁵² Dalen et al.,⁵³ Siebes et al.,³⁹ Siebes et al.,³⁷ Kolehmainen et al.,⁵⁴ An and Palisano,⁶⁵ McDougall and Wright,⁵⁹ Baldwin et al.,⁵⁸ Brewer et al.,⁸ King et al.,⁶⁷ King et al.,⁶⁰ Wright and Majnemer,⁶⁴ Chiarello et al.,²⁷ Stefánsdóttir and Egilson,⁵⁶ Poulsen et al.,⁶³ Kolehmainen et al.,⁴⁵ Øien et al.,⁴⁷ Cusick et al.,²³ Lemmens et al.,²⁸ Vroland-Nordstrand and Krumlinde-Sundholm,¹⁶ Palisano et al.,⁶⁶ Palisano,⁶¹ Knox,⁴⁰ Roelofsen et al.,⁴⁸ Forsingdal et al.,⁴⁹ Smart et al.,⁵⁰ King et al.⁵¹ An et al.,⁴¹ Robertson et al.⁴³
Enhance team collaboration (n = 5)	Rosen et al.,¹² Nijhuis et al.,⁶² Berman et al.,¹³ Kolehmainen et al.,⁴⁵ Cooper-Duffy and Eaker⁶⁸

Discussion

The results of this study highlight a significant gap in the literature explicating a sound theoretical basis for goal setting in paediatric rehabilitation. While adherence to the principles of family-centered care is a crucial aspect of collaborative rehabilitation practice, family-centered care alone is an inadequate theoretical framework for goal setting. The principles of family-centered care provide the impetus for a goal-directed approach that is collaborative and based on goals that are important and meaningful to families. While this approach is crucial, it neither provides insight into the important personal and goal qualities that result in improved outcomes nor the psychological constructs associated with behavior change.

The absence of robust theoretical frameworks for goal setting in paediatric rehabilitation is conspicuous since behavior change lies at the core of most sustainable rehabilitation interventions. Theoretical frameworks specific to goal setting have been evaluated in other settings resulting in a significant body of literature and research with the potential to inform goal setting in paediatric rehabilitation. For example, Locke and Latham⁶⁹ evaluated relationships between goal qualities and outcomes in industrial and commercial settings. This theoretical framework has been used to support goal setting in adult rehabilitation.⁷² Self-determination theory espouses that motivation to engage in effective goal pursuit depends on basic needs for autonomy, relatedness, and competence.⁷³ The Health Action Process Approach explains the three stages of behavior change—intention, planning, and action—and the relationships between psychological constructs at the three stages.⁷⁰ It is likely that a combination of theoretical frameworks is needed to adequately address goal setting in rehabilitation.⁷ Implementation of these and other theoretical frameworks specific to goal setting is emerging in adult rehabilitation⁷ and clearly has potential to inform goal setting theory and practice in paediatric.⁸ Since research on the effects of goal setting is unlikely to develop in a systematic way and depart from the current focus on pragmatic application without explicit articulation of theory, a strong theoretical framework specific to paediatric is needed.

The development of substantive theory related to goal setting would also emphasize how and why goal setting is implemented in clinical practice. For example, self-determination theory purports that children who experience control and choice over their goals will be more engaged and focussed, thus highlighting the importance of maximizing child engagement in goal setting and therapy.⁷³ While an exclusive focus on family-centered principles will likely facilitate a collaborative approach to goal setting focussed on family priorities, it does not emphasize the importance of ensuring a consistent focus on therapy goals as a motivational strategy. Use of the Health Action Process Approach would encourage clinicians to use strategies that support families at various stages of change. The fact that less than half of the papers in this review stated or implied that goal setting was used to improve rehabilitation outcomes, suggests that a sound theoretical framework should address the potential for effective goal setting to increase motivation, engagement in rehabilitation and therapeutic outcomes. This lack of emphasis on the therapeutic benefits of goal setting is inconsistent with the larger body of goal setting literature that emphasizes improved performance as the most important reason for goal setting.⁶⁹

This review revealed a lack of research specifically focussed on the evaluation of the effects of collaborative goal setting with families. Studies frequently cited as providing evidence of effectiveness of goal setting for improving outcomes evaluated goal setting in conjunction with another treatment approach and compared the combined approach to a different intervention.^19,74–76 There-fore, the distinct contribution of goal setting cannot be discerned. Research is needed to evaluate the proposed relationships between child and parent engagement in goal setting and the effects of autonomy, relatedness and competence on engagement in rehabilitation, and improved child outcomes. There is some evidence that strategies to increase child autonomy can contribute to increased performance and motor learning⁷⁷ and significantly increase child engagement in physical activity.⁷⁸ Since these two studies were conducted with typically developing children in non-rehabilitation settings, evaluation in the rehabilitation context is needed. Additional research is also needed to evaluate goal qualities and goal setting processes that optimize engagement in rehabilitation, outcomes that are meaningful to families and the effects at the service level. Kolehmainen et al.⁵⁴ provided some preliminary evidence that goal setting may decrease intervention duration due to a more streamlined approach to therapy focussed on family goals; however, additional evaluation of program level outcomes in different rehabilitation contexts is needed to make firm conclusions about the effects of goal setting on service level outcomes.

Children’s voices were largely absent from this body of literature. We did not find any qualitative studies exploring children’s experience with goal setting processes and descriptions of strategies to engage children in the goal setting process were lacking. Including children in joint administration of the Canadian Occupational Performance Measure, for example, may engage some children, but it does not ensure either optimal engagement of children or inclusion of their voices in setting their own rehabilitation goals. Older or more outspoken children may feel comfortable expressing their goals in a family interview with therapists, but many children will default to their parents. It is important to ensure the child’s voice is present in the goal setting process because they are capable of identifying achievable goals and they may not share the same goals as their parents.¹⁵ They may place a greater emphasis on school and social activities,¹⁵ for example. Exclusion of the child’s voice in goal-related discussions may lead to goals and related activities that are not motivating to the child, ultimately resulting in lower engagement in rehabilitation.

To date, implementation of formalized goal setting in clinical practice has been suboptimal.^5,54,55 Pragmatic challenges to effective goal setting reported in the literature include a mismatch between clinician and patient perspectives on appropriate goals,⁵⁴ and organizational barriers such as lack of time,³⁸ inability to adequately coordinate service teams,⁷⁹ and poor documentation.¹⁷ Therapists cite several barriers to goal setting including lack of time and concerns that families will not be able to identify reasonable goals.^8,54 Efforts toward implementation of standardized goal setting processes have been time-consuming and have had limited uptake in paediatric clinical practice.^5,54 Implementation challenges exist despite systematic efforts toward adoption as demonstrated by the implementation of the Rehabilitation Activities Profile for Children in the Netherlands⁴⁸ and the Good Goals⁵⁴ project in Scotland. Despite the multi-faceted and widespread implementation efforts associated with the Rehabilitation Activities Profile for Children, including a survey, national study group, local teams, extensive consultation of experts and potential users, a national conference, and evaluation of the tool,⁴⁸ approximately 24% of children in the Netherlands do not have documented rehabilitation goals⁵ and 52% of identified goals are unrelated to parent-identified problems or needs.¹⁷ While the outcomes of the Good Goals project related to increased service delivery efficiency were promising, therapist uptake was also less than optimal.⁵⁴

Increased patient autonomy was a rarely articulated purpose of goal setting. Currently, clinicians and researchers emphasize the importance of supporting children and families through transitional periods, such as a change in schools or transition to adulthood. We propose the current focus on “transitions” as finite events may detract from clinicians’ emphasis on facilitating autonomy development and engagement in healthcare decision-making over time. Consideration of the developmental trajectory of autonomy development⁸⁰ suggests that therapists should take a developmental approach to child and youth decision-making, encouraging increased engagement as the child’s capacity for decision-making increases. Strategies for engaging toddlers, for example, may include offering choices, acknowledging the child’s perspective, providing rationale for requests, and encouraging initiatives^81,82 while engagement of adolescents will resemble adult shared decision-making.

Optimizing child engagement in goal setting should also be considered from a rights perspective consistent with the new era of children’s rights and new sociology of childhood.^83–85 The United Nations Convention on the Rights of the Child⁸⁶ asserts that children’s voices should be heard and respected. The voices and agency that children have in the shaping of their own life worlds apply directly to the paediatric rehabilitation context. In response to emerging rights-based theoretical perspectives in childhood studies,^85,87 ensuring the presence of children’s voices in decision-making in clinical practice and research becomes a priority. This shift involves engagement with theory that problematizes the power dynamics at play between clinician/researcher, parent, and child in order to envision processes that mitigate power imbalances and create space for children’s voices to be heard and valued. The prioritization of children’s perspectives on rehabilitation intervention goals, strategies, expectations, and outcomes in research is beginning to emerge.^88–90

Limitations

Since we focussed on literature about goal setting, intervention studies that used individualized goal setting tools as outcome measures were excluded from this review. Therefore, this review did not represent the breadth of goal setting processes used in paediatric rehabilitation research. Similarly, since this review focussed on literature for children with motor disabilities from 1995 to 2017, the literature may not address specific implications for children with neurobehavioral diagnoses including autism spectrum disorder and any relevant literature prior to 1995.

Implications for practice

From an implementation perspective, it is important to consider that therapists’ perceptions of the reasons and benefits for goal setting may influence if and how they are willing to implement goal setting in their practice.⁷ For example, if, consistent with our findings, therapists perceive that the primary purpose of goal setting is to be family-centered and identify goals that are meaningful to families, they may decide not to use a formalized goal setting process if they feel they are already family-centered in other areas of practice. If therapists view evaluation of outcomes as the primary purpose of goal setting tools, pre-post measures might be implemented with a lack of strategies to revisit goals throughout the intervention. Conversely, if goal setting is viewed as a tool to increase motivation and engagement, as goal setting theory research suggests, therapists may be more likely to implement strategies to ensure the child, parents, and others working directly with the child are consistently revisiting intervention goals.

While ensuring that goals are meaningful to families is undeniably important, the emphasis in the qualitative literature with parents about the importance of therapist input and the benefits of therapist/family coconstruction of goals^6,47,49 suggests that a more tailored, collaborative, and flexible approach to goal setting is warranted. Families may prefer a collaborative approach with the therapists’ input and may not always want to be exclusively responsible for identifying goals. This finding emphasizes the importance of developing a relationship with families so that goal development and treatment planning is collaborative while grounded in the main concerns of families within their unique family contexts. The ability to cocreate short-term goals based on longer-term, family goals may also address the hesitancy of some therapists to engage in collaborative goal setting because of the concern that family goals may not always be attainable.

Clinical messages

While family-centered care provides strong rationale for collaborative goal setting, theory specifically related to goal setting has not been well articulated in paediatric rehabilitation.

Despite the commitment to family-centered care, the role of the child in the goal setting process is not well described.

Existing research on the evaluation of child, family, and service delivery outcomes associated with goal setting is limited.

Footnotes

Acknowledgements

The authors appreciate Barb Traill for her valuable insights on the concepts of autonomy and transition. Dr L.P.-W. led data collection and analysis and took the lead role in writing the manuscript. Dr S.K.P. resolved discrepancies in data extraction, participated in discussions about interpretation of analyses and completed a final edit of the manuscript.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr L.P.-W. was supported by the Canadian Child Health Clinician Scientist Training Program (CCHCSP), the Women and Children’s Health Research Institute (WCHRI) through the generous support of the Stollery Children’s Hospital Foundation, and Alberta Policy Wise for Children and Families.

Supplement material

Supplementary material is available for this article online.

ORCID iD

Lesley Pritchard-Wiart

References

Wiart

. Goal setting in pediatric rehabilitation. In: Siegert

Levack

WMM

(eds) Rehabilitation goal setting: theory, practice and evidence. Boca Raton, FL: CRC Press, 2015, pp.291–304.

Kang

Palisano

King

et al . A multidimensional model of optimal participation of children with physical disabilities. Disabil Rehabil 2014; 36: 1735–1741.

Shikako-Thomas

Shevell

Lach

et al . Determinants of participation in leisure activities among adolescents with cerebral palsy. Res Dev Disabil 2013; 34: 2621–2634.

Darrah

Wiart

Magill-Evans

et al . Are family-centred principles, functional goal setting and transition planning evident in therapy services for children with cerebral palsy? Child Care Health Dev 2012; 38: 41–47.

Nijhuis

BJG

Reinders-Messelink

de Blécourt

ACE

et al . Needs, problems and rehabilitation goals of young children with cerebral palsy as formulated in the rehabilitation activities profile for children. J Rehabil Med 2008; 40: 347–354.

Wiart

Ray

Darrah

et al . Parents’ perspectives on occupational therapy and physical therapy goals for children with cerebral palsy. Disabil Rehabil 2010; 32: 248–258.

Scobbie

Dixon

Wyke

. Goal setting and action planning in the rehabilitation setting: development of a theoretically informed practice framework. Clin Rehabil 2011; 25: 468–482.

Brewer

Pollock

Wright

. Addressing the challenges of collaborative goal setting with children and their families. Phys Occup Ther Pediatr 2014; 34: 138–152.

Tam

Teachman

Wright

. Paediatric application of individualized client-centred outcome measures: a literature review. Brit J Occup Ther 2008; 71: 286–296.

10.

Arksey

O’Malley

. Scoping studies: towards a methodological framework. Int J Soc Res Method 2005; 8: 19–32.

11.

Levack

WMM

Dean

Siegert

et al . Purposes and mechanisms of goal planning in rehabilitation: the need for a critical distinction. Disabil Rehabil 2006; 28: 741–749.

12.

Rosen

Miller

Pit-ten Cate

et al . Team approaches to treating children with disabilities: a comparison. Arch Phys Med Rehabil 1998; 79: 430–434.

13.

Berman

Miller

Rosen

et al . Assessment training and team functioning for treating children with disabilities. Arch Phys Med Rehabil 2000; 81: 628–633.

14.

McGavin

. Planning rehabilitation: a comparison of issues for parents and adolescents. Phys Occup Ther Pedi 1998; 18: 69–82.

15.

Vroland-Nordstrand

Eliasson

Jacobsson

et al . Can children identify and achieve goals for intervention? A randomized trial comparing two goal-setting approaches. Dev Med Child Neurol 2016; 58: 589–596.

16.

Vroland-Nordstrand

Krumlinde-Sundholm

. The Perceived Efficacy and Goal Setting System (PEGS), part I: translation and cross-cultural adaptation to a Swedish context. Scand J Occup Ther 2012; 19: 497–505.

17.

Nijhuis

BJG

Reinders-Messelink

de Blécourt

ACE

et al . Goal setting in Dutch paediatric rehabilitation. Are the Needs and Principal Problems of Children with Cerebral Palsy Integrated into Their Rehabilitation Goals? Clin Rehabil 2008; 22: 348–363.

18.

Löwing

Bexelius

Brogren Carlberg

. Activity focused and goal directed therapy for children with cerebral palsy—do goals make a difference? Disabil Rehabil 2009; 31: 1808–1816.

19.

Engelen

Ketelaar

Gorter

. Selecting the appropriate outcome in paediatric physical therapy: how individual treatment goals for children with cerebral palsy are reflected in GMFM-88 and PEDI. J Rehabil Med 2007; 39: 225–231.

20.

Østensjø

Øien

Fallang

. Goal-oriented rehabilitation of preschoolers with cerebral palsy—a multi-case study of combined use of the Canadian Occupational Performance Measure (COPM) and the Goal Attainment Scaling (GAS). Dev Neurorehabil 2008; 11: 252–259.

21.

Cusick

Lannin

Lowe

. Adapting the Canadian occupational performance measure for use in a paediatric clinical trial. Disabil Rehabil 2007; 29: 761–766.

22.

Steenbeek

Gorter

Ketelaar

et al . Responsiveness of goal attainment scaling in comparison to two standardized measures in outcome evaluation of children with cerebral palsy. Clin Rehabil 2011; 25: 1128–1139.

23.

Cusick

McIntyre

Novak

et al . A comparison of goal attainment scaling and the Canadian Occupational Performance Measure for paediatric rehabilitation research. Pediatr Rehabil 2006; 9: 149–157.

24.

Cermak

Bissell

. Content and construct validity of Here’s How I Write (HHIW): a child’s self-assessment and goal setting tool. Am J Occup Ther 2014; 68: 296–306.

25.

Franki

De Cat

Deschepper

et al . A clinical decision framework for the identification of main problems and treatment goals for ambulant children with bilateral spastic cerebral palsy. Res Dev Disabil 2014; 35: 1160–1176.

26.

McConlogue

Quinn

. Analysis of physical therapy goals in a school-based setting: a pilot study. Phys Occup Ther Pediatr 2009; 29: 154–169.

27.

Chiarello

Palisano

Maggs

et al . Family priorities for activity and participation of children and youth with cerebral palsy. Phys Ther 2010; 90: 1254–1264.

28.

Lemmens

RJM

Janssen-Potten

YJM

Timmermans

AAA

et al . Arm hand skilled performance in cerebral palsy: activity preferences and their movement components. BMC Neurol 2014; 14.

29.

Lowing

Hamer

Bexelius

et al . Exploring the relationship of family goals and scores on standardized measures in children with cerebral palsy, using the ICF-CY. Dev Neurorehabil 2011; 14: 79–86.

30.

Brandão

Oliveira

RHS

Mancini

. Functional priorities reported by parents of children with cerebral palsy: contribution to the pediatric rehabilitation process. Braz J Phys Ther 2014; 18: 563–571.

31.

Pollock

Sharma

Christenson

et al . Change in parent-identified goals in young children with cerebral palsy receiving a context-focused intervention: associations with child, goal and intervention factors. Phys Occup Ther Pediatr 2014; 34: 62–74.

32.

Löwing

Bexelius

Carlberg

. Goal-directed functional therapy: a longitudinal study on gross motor function in children with cerebral palsy. Disabil Rehabil 2010; 32: 908–916.

33.

Vroland-Nordstrand

Krumlinde-Sundholm

. The Perceived Efficacy and Goal Setting System (PEGS), Part II: evaluation of test-retest reliability and differences between child and parental reports in the Swedish version. Scand J Occup Ther 2012; 19: 506–514.

34.

Missiuna

Pollock

Law

et al . Examination of the Perceived Efficacy and Goal Setting System (PEGS) with children with disabilities, their parents, and teachers. Am J Occup Ther 2006; 60: 204–214.

35.

Jeglinsky

Brogren Carlberg

Autti-Rämö

. How are actual needs recognized in the content and goals of written rehabilitation plans? Disabil Rehabil 2014; 36: 441–451.

36.

Missiuna

Pollock

. Perceived efficacy and goal setting in young children. Can J Occup Ther 2000; 67: 101–109.

37.

Siebes

Ketelaar

Gorter

et al . Transparency and tuning of rehabilitation care for children with cerebral palsy: a multiple case study in five children with complex needs. Dev Neurorehabil 2007; 10: 193–204.

38.

Steenbeek

Ketelaar

Galama

et al . Goal Attainment Scaling in paediatric rehabilitation: a report on the clinical training of an interdisciplinary team. Child Care Health Dev 2008; 34: 521–529.

39.

Siebes

Wijnroks

Ketelaar

et al . Parent participation in paediatric rehabilitation treatment centres in the Netherlands: a parents’ viewpoint. Child Care Health Dev 2007; 33: 196–205.

40.

Knox

. Do parents of children with cerebral palsy express different concerns in relation to their child’s type of cerebral palsy, age and level of disability? Physiotherapy 2008; 94: 56–62.

41.

Palisano

et al . Effects of a collaborative intervention process on parent empowerment and child performance: a randomized controlled trial. Phys Occup Ther Pediatr. Epub ahead of print 20 September 2017. DOI: 10.1080/01942638.2017.1365324.

42.

Krasny-Pacini

Pauly

Hiebel

et al . Feasibility of a shorter Goal Attainment Scaling method for a pediatric spasticity clinic—the 3-milestones GAS. Ann Phys Rehabil Med 2017; 60: 249–257.

43.

Robertson

CMT

Deforge

Dosman

. Goal setting within a tertiary-level early developmental intervention program. Paediatr Child Healt 2017; 22: 184–189.

44.

Ödman

Krevers

Öberg

. Parents’ perceptions of the quality of two intensive training programmes for children with cerebral palsy. Dev Med Child Neurol 2007; 49: 93–100.

45.

Kolehmainen

Duncan

McKee

et al . Mothers’ perceptions of their children’s occupational therapy processes: a qualitative interview study. Brit J Occup Ther 2010; 73: 192–199.

46.

Jeglinsky

Salminen

Carlberg

et al . Rehabilitation planning for children and adolescents with cerebral palsy. J Pediatr Rehabil Med 2012; 5: 203–215.

47.

Øien

Fallang

Østensjø

. Goal-setting in paediatric rehabilitation: perceptions of parents and professional. Child Care Health Dev 2010; 36: 558–565.

48.

Roelofsen

Lankhorst

Bouter

. Simultaneous development and implementation of the children’s rehabilitation activities profile: a communication instrument for pediatric rehabilitation. Disabil Rehabil 2001; 23: 614–622.

49.

Forsingdal

St John

Miller

et al . Goal setting with mothers in child development services. Child Care Health Dev 2014; 40: 587–596.

50.

Smart

Aulakh

McDougall

et al . Optimizing engagement in goal pursuit with youth with physical disabilities attending life skills and transition programs: an exploratory study. Disabil Rehabil 2017; 39: 2029–2038.

51.

King

Schwellnus

Servais

et al . Solution-focused coaching in pediatric rehabilitation: investigating transformative experiences and outcomes for families. Phys Occup Ther Pediatr 2017; 1–17.

52.

Palisano

Dunst

et al . Strategies to promote family-professional collaboration: two case reports. Disabil Rehabil 2016; 38: 1844–1858.

53.

Dalen

Nyquist

Saebu

et al . Implementation of ICF in goal setting in rehabilitation of children with chronic disabilities at Beitostolen Healthsports Centre. Disabil Rehabil 2013; 35: 198–205.

54.

Kolehmainen

MacLennan

Ternent

et al . Using shared goal setting to improve access and equity: a mixed methods study of the Good Goals intervention in children’s occupational therapy. Implementation Science 2012; 7.

55.

Darrah

Wiart

Magill-Evans

. Do therapists’ goals and interventions for children with cerebral palsy reflect principles in contemporary literature? Pediatr Phys Ther 2008; 20: 334–339.

56.

Stefánsdóttir

Thóra Egilson

. Diverging perspectives on children’s rehabilitation services: a mixed-methods study. Scand J Occup Ther 2016; 23: 374–382.

57.

Costa

Brauchle

Kennedy-Behr

. Collaborative goal setting with and for children as part of therapeutic intervention. Disabil Rehabil 2017; 39: 1589–1600.

58.

Baldwin

King

Evans

et al . Solution-focused coaching in pediatric rehabilitation: an integrated model for practice. Phys Occup Ther Pediatr 2013; 33: 467–483.

59.

McDougall

Wright

. The ICF-CY and goal attainment scaling: benefits of their combined use for pediatric practice. Disabil Rehabil 2009; 31: 1362–1372.

60.

King

McDougall

Palisano

et al . Goal attainment scaling: its use in evaluating pediatric therapy programs. Phys Occup Ther Pedi 1999; 15: 31–52.

61.

Palisano

. Whose goals and outcomes are they? Phys Occup Ther Pedi 2014; 34: 1–3.

62.

Nijhuis

BJG

Reinders-Messelink

de Blécourt

ACE

et al . A review of salient elements defining team collaboration in paediatric rehabilitation. Clin Rehabil 2007; 21: 195–211.

63.

Poulsen

Ziviani

Kotaniemi

et al . “I think I can”: measuring confidence in goal pursuit. Brit J Occup Ther 2014; 77: 64–66.

64.

Wright

Majnemer

. The concept of a toolbox of outcome measures for children with cerebral palsy: why, what, and how to use? J Child Neurol 2014; 29: 1055–1065.

65.

Palisano

. Family-professional collaboration in pediatric rehabilitation: a practice model. Disabil Rehabil 2014; 36: 434–440.

66.

Palisano

Chiarello

King

et al . Participation-based therapy for children with physical disabilities. Disabil Rehabil 2012; 34: 1041–1052.

67.

King

Wright

Russell

. Understanding paediatric rehabilitation therapists’ lack of use of outcome measures. Disabil Rehabil 2011; 33: 2667–2671.

68.

Cooper-Duffy

Eaker

. Effective team practices: interprofessional contributions to communication issues with a parent’s perspective. Am J Speech Lang Pathol 2017; 26: 181–192.

69.

Locke

Latham

. New directions in goal-setting theory. Curr Dir Psychol Sci 2006; 15: 265–268.

70.

Schwarzer

Lippke

Luszczynska

. Mechanisms of health behavior change in persons with chronic illness or disability: the health action process approach (HAPA). Rehabil Psychol 2011; 56: 161–170.

71.

Odman

Oberg

. Effectiveness and expectations of intensive training: a comparison between child and youth rehabilitation and conductive education. Disabil Rehabil 2006; 28: 561–570.

72.

Siegert

O’Connell

Levack

WMM

. Psychology, goals and rehabilitation: providing a theoretical foundation. In: Siegert

O’Connell

Levack

WMM

(eds) Rehabilitation goal setting: theory, practice and evidence. Boca Raton, FL: CRC Press, 2015, pp.45–65.

73.

Ryan

Deci

. Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. Am Psychol 2000; 55: 68–78.

74.

Novak

Cusick

. Home programmes in paediatric occupational therapy for children with cerebral palsy: where to start? Aust Occup Ther J 2006; 53: 251–264.

75.

Ketelaar

Vermeer

Hart

Petegem-van Beek

et al . Effects of a functional therapy program on motor abilities of children with cerebral palsy. Phys Ther 2001; 81: 1534–1545.

76.

Law

Darrah

Pollock

et al . Focus on Function—a randomized controlled trial comparing two rehabilitation interventions for young children with cerebral palsy. BMC Pediatr 2007; 7: 31.

77.

Lemos

Wulf

Lewthwaite

et al . Autonomy support enhances performance expectancies, positive affect, and motor learning. Psychol Sport Exerc 2017; 31: 28–34.

78.

Sanders

Juvancic-Heltzel

Williamson

et al . The effect of increasing autonomy through choice on young children’s physical activity behavior. J Phys Act Health 2016; 13: 428–432.

79.

Plant

Tyson

Kirk

et al . What are the barriers and facilitators to goal-setting during rehabilitation for stroke and other acquired brain injuries? A systematic review and meta-synthesis. Clin Rehabil 2016; 30: 921–930.

80.

Wray-Lake

Crouter

McHale

. Developmental patterns in decision-making autonomy across middle childhood and adolescence: European American parents’ perspectives. Child Dev 2010; 81: 636–651.

81.

Deci

Eghrari

Patrick

et al . Facilitating internalization: the self-determination theory perspective. J Pers 1994; 62: 119–142.

82.

Côté-Lecaldare

Joussemet

Dufour

. How to support toddlers’ autonomy: a qualitative study with child care educators. Early Educ Dev 2016; 27: 822–840.

83.

Lundy

McEvoy

. Children’s rights and research processes: assisting children to (in)formed views. Childhood 2012; 19: 129–144.

84.

Powell

Smith

. Children’s participation rights in research. Childhood 2009; 16: 124–142.

85.

Jones

. Rethinking childhood: attitudes in contemporary society. New York: Continuum International Publishing Group, 2009.

86.

United Nations. Convention on the Rights of the Child, 1990, http://www.ohchr.org/EN/ProfessionalInterest/Pages/CRC.aspx

87.

Prout

. The future of childhood. London: RoutledgeFalmer, 2005.

88.

Gibson

Teachman

Wright

et al . Children’s and parent’s beliefs regarding the value of walking: rehabilitation implications for children with cerebral palsy. Child Care Health Dev 2012; 38: 61–69.

89.

Phelan

Gibson

Wright

. What is it like to walk with the help of a robot? Children’s perspectives on robotic gait training technology. Disabil Rehabil 2015; 37: 2272–2281.

90.

Teachman

Gibson

. Children and youth with disabilities: innovative methods for single qualitative interviews. Qual Health Res 2013; 23: 264–274.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.37 MB