a modified Delphi survey - Wiley Online Library

DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY

ORIGINAL ARTICLE

Important elements of measuring participation for children who need or use power mobility: a modified Delphi survey DEBRA A FIELD 1

| WILLIAM C MILLER 2 | TAL JARUS 2 | STEPHEN E RYAN 3 | LORI ROXBOROUGH 4

1 Graduate Programs in Rehabilitation Sciences, University of British Columbia, Vancouver, BC; 2 Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, BC; 3 Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON; 4 Therapy Department, Sunny Hill Health Centre for Children, Vancouver, BC, Canada. Correspondence to Debra A Field at Therapy Department, Sunny Hill Health Centre for Children, 3644 Slocan St., Vancouver, BC V5M 3E8, Canada. E-mail: [email protected] This article is commented on by Butler on page 500 of this issue.

PUBLICATION DATA

Accepted for publication 3rd November 2014. Published online 15th December 2014.

AIM To identify and reach consensus on important elements of measuring participation in everyday life for children who need or use power mobility. METHOD A panel (n=74) of parents, therapists, and researchers with pediatric power mobility and participation expertise completed an online modified Delphi survey. Three rounds determined important elements of participation for two groups: early childhood (18mo–5y) and school-aged (6–12y). ‘Elements of participation’ defined the ‘who, what, where, and how’ of measuring participation, generated from a literature review and participants’ suggestions. Consensus was set a priori as ≥80% agreement. RESULTS Consensus was reached on 21 out of 48 elements of participation important to measure for our population: eight elements for the younger group and 18 elements for the older group. When ranked by importance, four of the top five elements were common across both age groups. INTERPRETATION For children using power mobility, measuring participation in a variety of settings is critical, along with considering both the child’s and family’s participation. Evaluating child engagement and enjoyment of participation are priorities, as is measuring barriers and facilitators. For school-aged children, evaluating child and parent reports of participation are essential. These elements can guide tool selection and/or development.

Participation, defined as ‘involvement in a life situation’ by the International Classification of Functioning, Disability, and Health (ICF) is an important component of health.1,2 Few studies have investigated participation of children who use wheeled mobility.3,4 One study demonstrated that children who use wheeled mobility had lower performance of daily living activities and social roles as scored by the Life Habits Assessment when compared with children who ambulate.5 In another study, nearly half of children with mobility limitations had difficulty with everyday situations, with 20% completely unable to participate.6 This is concerning as decreased participation is associated with a lower quality of life for adults with mobility limitations.7 Therefore, it is crucial that participation restrictions are addressed during childhood. Wheeled mobility interventions (assessment, provision, and training of manual or power wheelchairs) are used by occupational and physical therapists (referred to as ‘therapists’) to reduce participation restrictions for children with mobility limitations.8,9 In the USA, an estimated 136 000 children with mobility limitations use wheeled mobility,10 although numbers using power wheelchairs are unknown. Power mobility provides foundational experiences for 556 DOI: 10.1111/dmcn.12645

cognitive and psychosocial development and facilitates independent mobility for those who have difficulty walking and/or self-propelling a manual wheelchair efficiently.4,8 Despite recognition of the need for research, limited empirical evidence supports the positive impact of power mobility on participation in everyday life for children.3,4,9 We refer to our population as children using power mobility with the understanding that we are focusing on children who use power mobility, or who could benefit from its use. The lack of validated participation tools for this population has contributed to the paucity of evidence.3,11,12 There are challenges to measuring participation in everyday life, including operationally defining participation, distinguishing participation from activity (within ICF framework1,2), addressing objective (e.g. number of situations, frequency, location) versus subjective (e.g. enjoyment, satisfaction, importance) dimensions of participation, incorporating environmental contexts, and evaluating participation over time.11,13–15 How best to account for developmental changes, the child’s participation within the context of the family, differences in perspectives (i.e. parent vs child), and changing autonomy and roles as © 2014 Mac Keith Press

children grow13,14 intensify the complexity when working with children. Participation tools address these challenges differently,13,14,16,17 with some tools penalizing use of assistive technologies (e.g. Life Habits Assessment).11 Our clinical observations suggest that few therapists use participation tools in power mobility evaluations, relying instead on expert opinion, clinical intuition, and experience to guide decision-making. To become more evidence based in our practice,18 understanding how best to measure participation for these children needs consolidation. For children using wheeled mobility, the need to clarify relationships between physical function, activities/participation, and capacity/performance within the ICF context has been acknowledged,3,19 along with calls to better understand and determine how best to measure their participation.3,13 However, even further precision is needed as there are differences between manual and power mobility.3,5 Consensus building to determine how best to measure a population’s needs and to develop core outcome sets has been proposed.15,18,20 Our study objectives were to identify and reach consensus on the important elements of measuring participation for children using power mobility. We define ‘elements of participation’ as the ‘who, what, where, and how’ of participation measurement. These elements go beyond describing the objective and subjective dimensions

• • • •

What this paper adds Identifies important elements of measuring participation to consider for those in early childhood (n=8) and those of school age (n=18). Differences for the two age groups merit consideration. Parents’ involvement facilitates a family centered approach to measuring participation. Elements can be used to guide tool selection and/or tool development.

of participation to encompass who should be the focus of the evaluation, who should be the respondents, what kinds of participation should be evaluated, as well as where and how participation should be measured in order to establish what is most important. We chose to restrict the ages from 18 months to 12 years to focus our investigation. Understanding the important elements for measuring participation with this population will help target measurement of participation and guide measurement tool selection and/or development.

METHOD An online survey (FluidSurvey; Fluidware Inc., Ottawa, ON, Canada) using a modified Delphi technique (Fig. 1) was used to build consensus from a panel of parents, therapists, and researchers who had expertise with pediatric power mobility and participation in everyday life. The Delphi technique, consisting of a structured process of sequen-

Round one: Invited vs. Responded

Round one Socio-demographic information Agreement with 46 statements regarding important elements

Parents

n=15 invited; n=14 responded 1 parent activated survey link but realized she no longer met inclusion criteria and did not answer any questions

Identification of additional elements Comments on information presented

Therapists

n=41 invited; n=40 responded 1 therapist activated survey link but did not respond

Researchers n=20 invited; n=20 responded

Total

n=76 invited; n=74 responded

Round two: Invited vs. Responded

Round two Summary of Round one results provided

Parents


Agreement with two additional statements regarding important elements

Therapists


Confirmation of agreement with statements


Total


Comments on information presented

Round three: Invited vs. Responded

Round three Summary of Round two results provided Ranking of elements that reached consensus Comments on information presented

Parents


Therapists



Total


Figure 1: Delphi survey design and number of participants that were invited versus those that responded. Consensus Building: Pediatric Participation and Power Mobility Debra A Field et al.

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tial rounds, builds consensus when there is uncertainty or lack of empirical evidence.21 It was selected because of its efficiency in communicating with a geographically diverse panel, its non-biased disclosure, and its integrative knowledge creation and exchange.20,21 We chose a modified Delphi technique that permits a more structured first round based on content in a literature review, rather than openended questioning.21

Participants Recruitment employed direct and indirect strategies. Figure 2 specifies the inclusion and exclusion criteria. Parents of children using power mobility and therapists were recruited in North America indirectly by posting information in various physical and electronic locations, including clinics, conferences, e-newsletters, and magazines. Given the limited number of North American researchers specializing in pediatric power mobility, internationally known researchers and therapists were emailed invitations directly. Sharing information with others was

encouraged. We sought a total sample size of 60 participants, with 20 participants each for parents, therapists, and researchers, but over-sampled to allow for attrition. Sample sizes for Delphi surveys vary considerably;21 we wanted adequate stakeholder subgroup representation given their different perspectives. The local university research ethics board provided approval.

Data collection Participants were provided study information at least 1 week before survey commencement. Participants were informed that consent would be indicated by activation of the initial survey link, but that they were free to withdraw at any time. A personalized survey link and completion instructions were emailed on day 1 of each round. Three rounds were used to determine the important elements of participation to measure (Fig. 1). Each round, designed to take less than 1 hour to complete, was available online for 24 hours a day for a minimum of 3 weeks. Participants were instructed to consider and provide responses for two

1. Parents with a child who: (a) is between 18 months - 12 years of age and has a chronic mobility limitation, (b) has used a power mobility device (PMD) for a minimum of 6 months, (c) can maneuver the PMD by themselves for at least 1/2 hour/day, (d) uses the PMD for at least 1/2 hour to participate in desired activities at home, school, or in the community on regular minimum weekly basis.

Inclusion criteria

2. Therapists who have: (a) certification as an occupational and/or physical therapist, (b) worked 5 years or more with children 18 months - 12 years of age with chronic mobility limitations, (c) in the last year, prescribed PMDs for at least 5 children, or worked with at least five children using power mobility interventions (e.g. assessment or training). 3. Researchers who have: (a) at least 3 years’ experience investigating power mobility and/or participation with children between the ages of 18 months - 12 years, (b) in the last 5 years at least one publication in a peer-reviewed journal, (c) in the last 5 years presented on pediatric power mobility and/or participation at least once at a national or international level conference.

Exclusion criteria

Potential participants who: (a) do not understand written English, at a Grade 12 level, or (b) are unable to commit to the timelines associated with the Delphi process, or (c) do not have access to the Internet.

Figure 2: Eligibility criteria for Delphi expert panel. 558 Developmental Medicine & Child Neurology 2015, 57: 556–563

age groups: early childhood (18mo–5y) and school age (6– 12y). The 18 month lower limit was chosen to reflect the age that children have demonstrated competent wheelchair driving,4 while middle and upper ages are associated with developmental and school transitions. Questions in each round were organized similarly for each age group. The data were analyzed after each round, with results informing development of the next round.20 Each subsequent round included a summary of the previous round’s results, along with survey questions and information to assist participants with their decision-making. Each round was pilot tested by a minimum of three of five advisory committee members (representative of the sample), and revised based on feedback. To encourage completion, reminders were emailed 1 week prior, as well as 1 and 2 weeks after round commencement. In Round one, 46 statements were generated (by DF) to operationalize 14 questions about elements of participation important to measure for children using power mobility (Table SI, supporting information published online). Questions and statements evolved from a literature review of participation measurement and tools, and the ICF1,2 taxonomy. We intentionally included both single option and combination option statements to enable a variety of responses and to decrease participant frustration, as we were cognizant that participant frustration may lead to attrition. Co-authors and pilot testers reviewed and approved all the questions and statements. Participants indicated their agreement with each statement being a critical element to measure, and identified additional elements of importance. Response formats included a 5 point Likert scale (i.e. 1=strongly agree to 5=strongly disagree) and text boxes for comments. In Round two, elements that reached consensus (≥80%) or came close to consensus (75–79%) in Round one were presented for confirmation, using the same Likert scale. Elements with 75–79% agreement were deemed close enough to threshold that confirmation was necessary, in order not to lose important information. In Round three, participants were instructed to rank the importance of elements in each age group that reached consensus in Round two, with no duplications (i.e. 1=most important, 2=second most important, 3=third most important, etc.). Participants were asked to rank only the top ten if more than ten elements were presented.

Data analysis Descriptive statistics were calculated for all study variables. Consensus was set a priori as ≥80% agreement.18 In order to remove bias of uneven subgroups, consensus ≥80% agreement was implemented not only across the total group but also within the three subgroups. A three-point scale, generated by collapsing the five-point scale (‘strongly agree’+‘agree’ were combined as ‘agree’; ‘neither agree nor disagree’; ‘disagree’+‘strongly disagree’ were combined as ‘disagree’), was used to consolidate the analyses. Rankings

were assigned a weighted score where weight was indicated by the number of elements reaching consensus (#1 was assigned the highest weighted score [e.g. 10 if ten elements presented], #2 was assigned the second highest weighted score [e.g. 9 if ten elements presented], etc.). The summed weighted score for the total group determined final ranking of elements (i.e. the element with the highest sum of weighted scores was first priority).

RESULTS Seventy-six participants initially agreed to participate. One parent activated the survey link but did not complete any questions after realizing that she no longer met eligibility criteria. One therapist activated the survey link but did not respond because of personal reasons, resulting in a total sample of 74 for Round one (14 parents, 40 therapists, and 20 researchers). The response rate remained above 90% across three Rounds over 7 months (Fig. 1). Table I describes the sociodemographic characteristics of Round one participants. Therapists, females, and those between 40 years and 49 years of age were most predominant. Table SIIa (supporting information published online) presents the important elements of measuring participation that reached consensus in Rounds one and two. In Round one, 14 elements reached consensus for schoolaged children for the total group plus all three stakeholder subgroups, unlike the early childhood group, where no element reached consensus for the total group plus all three stakeholder subgroups (although 13 elements obtained >80% for total group only). Panelists identified two additional elements: the child’s engagement and autonomy. Round two had an increased number of elements reaching consensus for the total group plus all three stakeholder subgroups: 18 for the older group and 8 for the younger group. Overall, there were 21 elements identified, with 5 in common across both age groups. Elements reaching consensus described whose point of view should be sought (parent and/or child), who should be the focus (child and family), what types of participation (objective and/or subjective dimensions), where participation takes place (home, school, and/or community), and how participation should be evaluated (comparison with self over time, include barriers and facilitators). Table SIIb lists elements not achieving consensus in Round two. Table II presents the top five ranked priorities for elements that reached consensus for each age group in Round three. For the younger group, a ranking of #1 (most important) was given a weighted score of 8 as there were a total of eight elements ranked. For the older group, a ranking of #1 was given a weighted score of 10 as 10 out of 18 elements were ranked. Of the five elements that reached consensus across both age groups, four ranked within the top five. Measuring participation in a combination of settings was the highest priority for both age groups. Further details are available on request.

Consensus Building: Pediatric Participation and Power Mobility Debra A Field et al.

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Table I: Sociodemographic characteristics of Round one participants who responded

Sex Male Female Age (y) 20–29 30–39 40–49 50–59 60–65 Country of residence North America South America Australasia Asia Middle East Europe For therapists and researchers Profession Occupational therapist Physical therapist Pediatric clinical experience (y) 0–5 6–10 11–15 16–20 21–25 26–30 30+ Not answered Research experience (y) 0–5 6–10 11–15 16–20 21–25 Not applicable Not answered For parents Age of children (mean) Range Sex of children Male Female Years of PM use (mean) Range

Parents (n=14)

Therapists (n=40)

Researchers (n=20)

Total (n=74)

3 11

2 38

1 19

6 68

0 3 11 0 0

2 9 18 7 4

0 2 12 2 4

2 14 41 9 8

14

26 1 2 0 3 8

9 0 4 1 0 6

49 1 6 1 3 14

26 14

12 8

38 22

5 4 7 6 5 3 7 3

2 4 4 4 4 1 1 0

7 8 11 10 9 4 8 3

16 5 5 1 1 10 2

2 5 9 3 1 0 0

18 10 14 4 2 10 2

8y 10mo 3–11y 12 3 4y 6mo 1–9y

PM, power mobility.

Table II: Results of Round three top ranking elements that reached consensus for each age group (in descending order) Priority 1

18mo–5y

6–12y

2

Participation in a combination of settings (e.g. home, school and community) Combination of family participation and child participation

3 4 5

Child’s engagement in participation Barriers and facilitators of participation Child’s enjoyment of participation

DISCUSSION Consensus building, recognized for synthesizing and strengthening evidence inherent in clinical practice,18,20 is recommended for advancing participation measurement.15 This study, using a modified Delphi survey with a panel of parents, therapists, and researchers, reached consensus on 21 important elements for measuring participation of 560 Developmental Medicine & Child Neurology 2015, 57: 556–563

Participation in a combination of settings (e.g. home, school and community) Combination of parent’s report of child’s participation and child’s self report of participation Child’s engagement in participation Barriers and facilitators of participation Combination of family participation and child participation

children using power mobility. Eight elements were identified for those in early childhood, while 18 elements were identified for those of school age; 5 were common across both groups. These elements can guide selection of participation tools or be used as a ‘blueprint’ for developing tools that better meet our population’s needs. Although there appears to be a developmental aspect, the disparity in the

number of elements reaching consensus between groups may be influenced by several factors. Adults may have a greater awareness of school-aged children’s needs as they have more life experiences and speak more for themselves. It may be reflective of greater research evidence describing participation for the older age group,22 with which some participants might be familiar. This evidence also informed survey development, so may have inadvertently biased questions and responses. Perhaps it reflects differences in geographical clinical practices whereby power mobility provision to preschool children is not as common.4 Given the difference in numbers of elements that reached consensus, it is noteworthy that four of the top five elements were similar for both age groups. The importance of understanding the nature, variability, and consequences of participation has been acknowledged, especially for less accessible populations13 such as those using power mobility. The elements that reached consensus provide guidance as to what is meaningful to measure for our population,19 and should facilitate selection or development of participation tools.16,17 The highest priority – measuring participation in a combination of settings – reflects the importance of where participation occurs,13,14,23 as participation and environment are intimately linked.23 For children using power mobility, environmental factors have a tremendous influence on successful implementation of power mobility interventions,3,4 and they participate differently depending on the setting.8,9,19 Many participants echoed this, with one example: ‘performance differs in different environments.’ Including barriers and facilitators when measuring participation is a priority for both age groups. Children’s choice of wheeled mobility options can be strongly influenced by barriers and facilitators.3,8,9,19 Participants’ comments considered a variety of physical factors (‘With the powerchair you must plan on where your going and if the place can accommodate the powerchair’), social factors (‘Child’s performance differ with different facilitators (teachers, parents, therapists)’), and attitudinal factors (‘Risk-taking . . . can be inhibited by carers who are worried about safety and feel more in control if the child is less active. Powered mobility challenges/changes how parents interact with the child.’). Therapists can enhance individuals’ participation by understanding what is important for the child and family, while seeking the best ‘fit’ between desired activities, (power) mobility options, and the environments in which they are used.9 This is critical both when recommending specific wheelchair features and when facilitating discussions about mobility options for specific activities. One parent stated ‘we live this every day, our opinions are the important ones’. Additionally, measuring participation with a ‘barriers and supports approach’ may be useful for policy purposes13 as suitable interventions can be identified and plans implemented to support optimal participation for wheeled mobility users.9,11

The importance of measuring the child’s engagement and enjoyment is acknowledged,14,23,24 with engagement in life situations a central concept in participation.1,2,14 Parents comment on their child’s enjoyment and ‘being engaged’ as two distinct descriptors,23 whereas researchers suggest a child’s ‘self-engagement’ refers to enjoyment, self-determination, and an understanding that comes from participating.24 Others approach this differently, incorporating ‘satisfaction’ or exploring health-related quality of life.11,12,14,15 Our participants’ comments reflect the significance of documenting enjoyment and engagement from the child’s perspective: ‘Children who live in these chairs. . .matter most. . .Its all about them’, and ‘Our son decides what he is more comfortable doing.’ Within the pediatric power mobility literature, qualitative evidence describes significant changes for the child’s and family’s engagement and enjoyment upon power mobility provision; however, there is limited quantitative evidence of this.3,4,9 Perhaps the choice of measurement tools influences this.3,16,17,19 Alternatively, this may reflect a need to develop more valid measures for this population. Evaluating a combination of family and child participation is also important. Although this interdependence is relevant to all children and families,24 it is critical for younger children and those with significant impairments.14 Likewise, our participants’ shared comments: ‘Consider that young children (8mo–5y) do not usually participate “alone” but with supervision’; and ‘Should take into account family style’. Additionally, when asked if there were other elements to consider, one participant responded ‘Involvement of siblings’. Evaluating this dynamic as children grow is also important as their relationships and roles change over their lifespan.14 Power mobility not only impacts the child, but families too, as illustrated by reported changes in play and social interactions.3,4,9 This is a reciprocal relationship: child and family participation influences the types of power mobility features selected, and features impact their participation. One parent commented ‘Even though the chair provides mobility its also very isolating.’

LIMITATIONS The success of a Delphi survey rests on the selection of an appropriate panel.20,21 Different stakeholder perspectives are important,20,23 and we intentionally sought a panel with diverse experiences and perspectives. Despite our intent to recruit equivalent numbers, recruitment challenges resulted in uneven representation across stakeholder subgroups. Achieving consensus across total group plus all subgroups minimized bias. We accepted all interested and eligible therapists, anticipating attrition and valuing knowledge exchange and collaboration. Given the relatively small and specialized community of pediatric power mobility practice, complete anonymity might not be possible. Recruitment of parents was much more challenging despite significant efforts to recruit through multiple venues. A systematic review of published articles of the Delphi technique found few studies that included families and


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children.20 We recognize that parents of children with complex conditions have significant demands on their time and energy, making it extremely difficult to engage in research. That 13 out of 14 participants completed all rounds demonstrated exceptional commitment, and their input was invaluable. Although our initial thoughts included children on the panel,20 feasibility issues were considerable. We anticipate a future study confirming findings with children and other stakeholders (e.g. teachers, funders, suppliers). Participants’ requirement to understand written English and have internet access may also be a limitation. We acknowledge participants’ different levels of understanding and experience with the construct of participation and how best to measure it may have influenced results. We provided background information and definitions for a minimal standard of common understanding, along with round summaries by total group and stakeholder groups, offering exposure to a broader set of ideas. Generalizability of findings may be restricted because of panel representation, which may be reflective of recruitment challenges and/or power mobility usage. Finally, not all relevant elements of participation might have been brought forward for consideration, therefore we cannot assume that these are the only elements worthy of discussion. This study lays the foundation to initiate debate and future discovery towards a better understanding of the participation of children using power mobility.

CONCLUSIONS This study provides foundational evidence of 21 important elements to consider when measuring participation for children, aged 18 months to 12 years, using power mobility. Our findings speak to the importance of measuring participation from different perspectives to understand the uniqueness of children who use power mobility and their families’ life situations. Our next steps include identifying

participation tools that match these elements and evaluating them with children using power mobility to ensure adequate measurement properties. This study has laid the groundwork for further discussions and investigations on this topic, which may include developing a measurement toolkit and/or more appropriate measures of participation for this population. A CK N O W L E D G E M E N T S The authors would like to recognize the commitment and contributions of our panel participants, for without their dedication to the process we would not have reached consensus. We also value the efforts of all who assisted us with recruitment, particularly John Armstrong, Doug Kerr and Stefanie Laurence of Motion Specialties, and Jeff Tiessen of DT Publishing Group. Thanks also go to 21st Century SCIENTIFIC Inc. for use of their photo for recruitment (photo source http://www.wheelchairs.com/photos/narrowhframe/kidsandbike2.jpg). We are especially grateful for the staff support and resources offered by the Rehabilitation Research Program at GF Strong Rehabilitation Centre, and Sunny Hill Health Centre for Children, in Vancouver BC. We would like to acknowledge the significant contributions of Mark Meheriuk, Rei Ahn, and Jason Tong. Finally, a special thank-you to Lori Fullerton, Cathy Clancy-Benfey, Patricia Mortenson, Beth Ott, and Brodie Sakakibara for their time and input as our advisory committee. The authors state that they have no interests that might be perceived as posing a conflict or bias.

SUPPORTING INFORMATION The following additional material may be found online: Table SI: Elements of participation: questions and response option statements. Table SIIa: Elements that reached consensus (^,+,*) in Rounds one and two. Table SIIb: The elements not achieving consensus (^) in Round two.

REFERENCES 1. World Health Organization. International Classifica-

6. Statistics Canada. Participation and Activity Limitation

12. Harris A, Pinnington LL, Ward CD. Evaluating the

tion of Functioning, Disability, and Health - Children

Survey 2006: A profile of assistive technology for peo-

impact of mobility-related assistive technology on the

and Youth. Geneva: World Health Organization,

ple with disabilities in Canada. 2008; 89-628-X no.

lives of disabled people: a review of outcome measures.

2007.

005:1-27.

2. World Health Organization. International Classification

7. Williams G, Willmott C. Higher levels of mobility are

of Functioning, Disability and Health (ICF). Geneva:

associated with greater societal participation and better

World Health Organization, 2001.

quality-of-life. Brain Inj 2012; 26: 1065–71.

3. Rousseau-Harrison K, Rochette A. Impacts of wheel-

8. Livingstone R, Paleg G. Practice considerations for use

chair acquisition on children from a person-occupation-

and introduction of power mobility with children. Dev

environment interactional perspective. Disabil Rehabil

Med Child Neurol 2014; 56: 210–21.

Assist Technol 2013; 8: 1–10. 4. Livingstone R, Field D. Systematic review of power mobility outcomes for infants, children and adolescents with mobility limitations. Clin Rehabil 2014; 28: 954–64. 5. Lepage C, Noreau L, Bernard PM. Association between

9. Wiart L. Exploring mobility options for children with physical disabilities: a focus on powered mobility. Phys Occup Ther Pediatr 2011; 31: 16–8.

Br J Occup Ther 2005; 68: 553–8. 13. King G. Perspectives on measuring participation: going forward. Child Care Health Dev 2013; 39: 466–9. 14. Coster W, Khetani MA. Measuring participation of children with disabilities: issues and challenges. Disabil Rehabil 2008; 30: 639–48. 15. Heinemann AW, Tulsky D, Dijkers M, et al. Issues in participation measurement in research and clinical applications. Arch Phys Med Rehabil 2010; 91(Suppl 1): S72–6. 16. Chien C, Rodger S, Copley J, Skorka K. Comparative

10. LaPlante MP, Kaye HS. Demographics and trends in

content review of children’s participation measures using

wheeled mobility equipment use and accessibility in the

the International Classification of Functioning, Disabil-

community. Assist Technol 2010; 22: 3–17.

ity and Health-Children and Youth. Arch Phys Med

characteristics of locomotion and accomplishment of life

11. Harris F. Conceptual issues in the measurement of par-

habits in children with cerebral palsy. Phys Ther 1998;

ticipation among wheeled mobility device users. Disabil

78: 458–69.

Rehabil Assist Technol 2007; 2: 137–48.

562 Developmental Medicine & Child Neurology 2015, 57: 556–563

Rehabil 2014; 1: 141–52. 17. Adolfsson M, Malmqvist J, Pless M, Granlund M. Identifying child functioning from an ICF-CY perspective:

everyday

life

situations

explored

in

measures

of

participation. Disabil Rehabil 2011; 33: 1230–44. 18. Palisano RJ. Practice knowledge: the forgotten aspect of evidence-based practice. Phys Occup Ther Pediatr 2010; 30: 261–3. 19. Kerfeld CI, Dudgeon BJ, Engel JM, Kartin D. Development of items that assess physical function in children who use wheelchairs. Pediatr Phys Ther 2013; 25: 158–66. 20. Sinha IP, Smyth RL, Williamson PR. Using the Delphi technique to determine which outcomes to measure in

clinical trials: recommendations for the future based on

23. Bedell GM, Khetani MA, Cousins MA, Coster WJ,

a systematic review of existing studies. PLoS Med 2011;

Law MC. Parent perspectives to inform development

8: e1000393.

of measures of children’s participation and environ-

21. Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs 2000; 32:

ment. Arch Phys Med Rehabil 2011; 92: 765–73. 24. Kang LJ, Palisano RJ, King GA, Chiarello LA. A multidimensional model of optimal participation of children

1008–15. 22. Bult M, Verschuren O, Jongmans M, Lindeman E, Ketelaar M. What influences participation in leisure activi-

with physical disabilities. Disabil Rehabil Assist Technol 2013; 36: 1735–41.

ties of children and youth with physical disabilities? A systematic review. Res Dev Disabil 2011; 32: 1521–9.


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