Identifying Self-Care Adl Challenges

Home , Adaptive clothing, Universal design

ADDRESSING ACTIVITIES OF DAILY LIVING (ADLS) BY DESIGN:

IDENTIFYING SELF-CARE ADL CHALLENGES

& DESIGNING CLOTHING TO PROMOTE INDEPENDENCE

FOR CHILDREN WITH DISABILITIES

Martha L. Hall

A dissertation submitted to the Faculty of the University of Delaware in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Biomechanics and Movement Science

Fall 2018

ADDRESSING ACTIVITIES OF DAILY LIVING (ADLS) BY DESIGN:

IDENITFYING SELF-CARE ADL CHALLENGES

& DESIGNING CLOTHING TO PROMOTE INDEPENDENCE

FOR CHILDREN WITH DISABILITIES

Martha L. Hall

Approved: ______Gregory Hicks, Ph.D. Chair of the Department of Physical Therapy

Approved: ______Kathleen S. Matt, Ph.D. Dean of the College of Health Sciences

Approved: ______Douglas J. Doren, Ph.D. Interim Vice Provost for the Office of Graduate and Professional Education

I certify that I have read this dissertation and that in my opinion it meets the academic and professional standard required by the University as a dissertation for the degree of Doctor of Philosophy.

Signed: ______Michele A. Lobo, Ph.D. Professor in charge of dissertation

Signed: ______James C. Galloway, Ph.D. Member of dissertation committee

Signed: ______Lucy Dunne, Ph.D. Member of dissertation committee

Signed: ______Dustyn Roberts, Ph.D. Member of dissertation committee

ACKNOWLEDGMENTS

This dissertation was a labour of love and I feel so blessed to have received amazing support, guidance, and mentoring along the way. I want to begin by thanking the participants for each of these studies. These families welcomed me into their lives and to this day I miss going on data collections to visit them. These families have changed my life and have ensured that my work will forever be user-centered. Thank you so much to my advisor Dr. Michele Lobo. Dr. Lobo supported me completely from the very beginning and I appreciate so much all I have learned from her. She encouraged me to create this “Grand Design Challenge” of a dissertation and I am eternally grateful to her for the opportunity. Thank you to my dissertation committee for their expertise, advice, and feedback on this project. Their collective input made the research so much stronger and I benefitted greatly from their interdisciplinary perspective. To my Move to Learn family (Iryna Babik, Andrea Cunha, and Ben Greenspan), thank you for your friendship, guidance, support, patience, and all the ice cream. Thank you too to all the undergraduate Research Assistants in the M2L Lab. Lastly to my friends and family, I cannot adequately express the love and support I have felt during my PhD program and beyond. Several major life events transpired over the course of this study: thank you for keeping me sane and helping me always “find the joy.”

iv TABLE OF CONTENTS

LIST OF TABLES ...... ix LIST OF FIGURES ...... xi ABSTRACT ...... xiii

Chapter

1 INTRODUCTION ...... 1

Dissertation Context ...... 1 Dissertation Overview ...... 3 Innovation ...... 7

2 NEEDS IDENTIFICATION FOR DESIGN: IDENTIFYING THE SCOPE OF ACTIVITY OF DAILY LIVING CHALLENGES AND RELATED NEEDS FOR CHILDREN WITH SENSORY-MOTOR IMPAIRMENTS AND THEIR CAREGIVERS ...... 8

Abstract ...... 8 Background ...... 9 Methods ...... 12

Survey ...... 12 Interviews ...... 13 Coding and Analyses ...... 14

Results ...... 15

Survey ...... 15 Interviews ...... 16 User Needs: Functional Challenges ...... 19 User Needs: Aesthetic Considerations ...... 21 User Needs: Personal/Social Expression ...... 22 User Needs: Clothing Accessibility ...... 23

Discussion and Implication ...... 24

3 ASSESSING THE ADAPTIVE CLOTHING DESIGN LANDSCAPE: DEVELOPING A COMMUNITY RESOURCE FOR CLOTHING THAT PROMOTES INDEPENDENCE FOR USERS WITH SPECIAL NEEDS ..... 27

Abstract ...... 27 Introduction ...... 28

v Conceptual Framework ...... 29

Participatory Design Approach ...... 29 Theoretical Model ...... 29

Methods ...... 31

Overview of Developing the Online Resource...... 31 Phase 1: Initial End User Consultation ...... 32

Participants...... 32 Data Analysis ...... 34

Phase 2: Content and Web Development ...... 35 Phase 3: User Testing, and Feedback Followed by Dissemination of the Website...... 36

Results ...... 36

Phase 1: End User Consultation ...... 36

Dressing Challenges...... 36 Information Needs About Dressing Challenges and Clothing...... 38

Phase 2: Content and Web Development ...... 39 Phase 3: User Testing and Feedback Followed by Dissemination of the Website ...... 44

Website Analytics ...... 45

Conclusion ...... 46

Limitations and Future Directions ...... 46

4 FUN & FUNCTION: PARTICIPATORY APPAREL DESIGN FOR CHILDREN WITH MOTOR AND/OR SENSORY IMPAIRMENTS ...... 48

Abstract ...... 48 Introduction...... 49 Methods ...... 52

Research Design...... 52

Participants...... 52 Overview of Methods...... 53

vi Results ...... 60

Baseline Data Collection...... 60 Design Phase...... 63 Usability Testing...... 67

Self-Reported Wearing Times and Feedback Results...... 83

Discussion ...... 84 Conclusion and Future Directions ...... 88

5 CONCLUSION ...... 90

REFERENCES ...... 94

Appendix

A DESIGN AND DEVELOPMENT OF THE FIRST EXOSKELETAL GARMENT TO ENHANCE ARM MOBILITY FOR CHILDREN WITH MOVEMENT IMPAIRMENTS ...... 103

Introduction ...... 104 Methods ...... 106

Participants ...... 106 Design & Prototyping ...... 107 Prototype Testing ...... 113

Results ...... 115

Prototype Testing ...... 115 Field testing the first prototype...... 117 Implementation ...... 119

Discussion ...... 122

Summary of the Project...... 122 Accessibility ...... 123 Significance of This Project ...... 124

Conclusion ...... 125 References ...... 127

B SURVEY QUESTIONS ...... 131

vii Challenges with Daily Activities for Individuals with Motor or Sensory Impairment ...... 131 [Version for Individual with motor/sensory impairment] ...... 131 Challenges with Daily Activities for Individuals with Motor or Sensory Impairment ...... 133 [Version for Caregiver of individual with motor/sensory impairment] ...... 133

C INTERVIEW QUESTIONS ...... 135 D PHYSICAL THERAPY ASSESSMENT PROTOCOL ...... 138

Materials: ...... 138 Summary of the tasks: ...... 138 Assessment Protocol ...... 138

Body Structure and Function ...... 138 Activities and Participation...... 140

E DRESSING STUDY CODING PROTOCOL ...... 143

Assessing User Independence During Dressing Task ...... 143

PASS 4 (column 4): ChildVisual...... 146 PASS 5 (column 5): ChildManual – ADD right and left foot too ...... 146 PASS 6 (column 6): ChildVerbal ...... 148 PASS 7 (column 7): ParentManual...... 149 PASS 8 (column 8): ParentVerbal ...... 150 PASS 9 (column 9): Orientation ...... 151 PASS 10 (column 10): Affect ...... 151 PASS 11 (column 11): Posture ...... 153 GENERAL NOTES: ...... 154 CODING DATA REVIEW: ...... 154

F PARTICIPANT WEAR LOG ...... 156 G IRB APPROVALS ...... 157

viii LIST OF TABLES

Table 1 Demographic Characteristics of the Interview Sample (F= female, M = male) ...... 13

Table 2 Emergent themes regarding impairment, number of respondents reporting each theme, and number of times each theme was referenced . 15

Table 3 Emergent themes regarding daily activity challenges, number of respondents reporting each theme, and number of times each theme was referenced ...... 16

Table 4 Demographic Characteristics of the Sample Population (F = female, M = male) ...... 33

Table 5 Results from the content search ...... 39

Table 6 Demographic Characteristics of the Participants (F= female, M = male) ...... 52

Table 7 Participants’ characteristics (Mean ± SD) of body function and structure, and activity and level of participation domains...... 61

Table 8 Dressing Board Results ...... 63

Table 9 Mean performance for task behaviors during the complete task (dressing and undressing) comparing Commercial Jeans with Self- selected Pants, Custom Design Jeans, and Universal Design Jeans for all participants, sorted by group. Means presented as percent of complete task time with standard deviations in parentheses; asterisk indicates statistically significant difference relative to the Commercial Jeans...... 68

Table 10 Average self-reported wearing frequency and duration with standard deviation in parentheses throughout the 3-week Usability Testing period based on reports from the participant log...... 83

Table 11 Table 1. Metrics, desired target outcomes, and method of assessment during field testing for each metric relating to the functional, expressive, aesthetic, and accessibility needs identified via informal, conversational interviews with the participants, reviews of safety standards, and domain specific expertise of the team members...... 111

ix Table 12 Outcomes from field-testing of the prototype using steel wire bundles as springs inserted in vinyl tunnels in the garment to lift the arms...... 118

Table 13 Range of motion (active – AROM, passive - PROM), Muscle strength (MS) and Muscle Tone (MT) Assessments for the right ® and left (L) sides: ...... 141

x LIST OF FIGURES

Figure 1 FEA2 Model (Hall & Lobo, 2017) ...... 11

Figure 2 Themes from the interviews. Numbers in parentheses reflect the number of times each theme or issue was mentioned across all interviews...... 19

Figure 3 FEA2 Model (Hall & Lobo, 2017) ...... 31

Figure 4 Homepage of FashionAbled.org...... 43

Figure 5 Shop, Dressing Help, and How To Guide webpage screenshots from FashionAbled.org ...... 44

Figure 6 Dressing board for assessing fine motor ability to complete a variety of clothing fasteners ...... 56

Figure 7 The 5 F Framework: Design metrics and constraints for the garment prototypes ...... 64

Figure 8 Design solutions addressing metrics and constraints for garment prototypes ...... 65

Figure 9 Examples of the Universal and 2 Custom Designs, featuring magnetic fasteners (placement indicated by arrows)...... 67

Figure 10 Dressing times for the Commercial Jeans and Self-selected Pants for the entire study sample; asterisk indicates statistically significant difference...... 72

Figure 11 Undressing times for the Commercial Jeans Self-selected Pants for the entire study sample; asterisk indicates statistically significant difference ...... 72

Figure 12 Dressing times for the Commercial Jeans and Self-selected Pants for each group; asterisk indicates statistically significant difference ...... 74

Figure 13 Undressing times for the Commercial Jeans and Self-selected Pants for each group; asterisk indicates statistically significant difference...... 75

Figure 14 Dressing times for the Commercial Jeans, Custom Design Jeans, and Universal Design Jeans for the entire study sample; asterisk indicates statistically significant difference...... 77

xi Figure 15 Undressing times for the Commercial Jeans, Custom Design Jeans, and Universal Design Jeans for the entire study sample; asterisk indicates statistically significant difference...... 78

Figure 16 Dressing times for the Commercial Jeans, Custom Design Jeans and Universal Design Jeans for each group; asterisk indicates statistically significant difference...... 79

Figure 17 Undressing times for the Commercial Jeans, Custom Design Jeans and Universal Design Jeans for each group; asterisk indicates statistically significant difference...... 80

Figure 18 Figure 1. User-centered conceptual model for designing assistive/rehabilitative wearable technology, expanded from the Consumer Needs Model of Lamb & Kallal (1992)...... 108

Figure 19 Figure 2. Our cyclical design process for this project...... 113

Figure 20 Figure 3. Computer aided drawing of the initial selected solution. The prototype was a onesie-style garment featuring a snap front closure with crotch strap, underarm casings made of composite material to house the wire bundles, and attached nylon webbing belt and wrist straps to stabilize the supports...... 116

Figure 21 Figure 4. The refined prototype (Playskin Lift™), shown with the removable wire bundles (bottom). The device is made with white nylon spandex powernet fabric with a zipper closure. The crotch strap and belt have been removed. The white soft Velstretch™ wrist straps are detached for use if needed. The casings under each arm are made with polyvinyl chloride (PVC) composite fabric...... 121

Figure 22 Screenshot of one step from the open-source DIY fabrication manual. This manual is a step-by-step guide for making a version of the Playskin Lift™ using a commercial onesie or shirt-style child’s garment (available for download at the following link: http://sites.udel.edu/pt/michele-lobo/)...... 123

xii ABSTRACT

Children who have a motor or sensory impairment may struggle with self-care tasks, such as dressing independently, or may be completely reliant on a caregiver to help them perform these tasks. Moreover, the apparel industry may view this population of users as small and therefore not cost-effective to design for, or homogenous in their clothing-related needs, and therefore designed using a “one- solution-fits-all” approach. This dissertation explores the “design for disability” space to identify (1) the range and scope of dressing-related needs specific to a subset of this broad population: children with disabilities and their caregivers, (2) the alternative adaptive clothing solutions commercially available for this population, and (3) the dressing behaviors of the user during a typical dressing task and the usability of a universal design or custom design solution in comparison to commercially available standardized clothing options. Results reveal the importance of dressing as a self-care task and related issues, adaptive clothing and dressing needs reported by this sample population and what solutions are commercially available, and also what typical dressing task behaviors of this sample of children with disabilities are observed when using self-selected clothing, commercially available clothing designed for their typical peers, and clothing design prototypes that address the problem from a universal or custom designed solution. We determine that there is wide range and variation of dressing-related needs for this population, that stakeholders benefit from identifying commercially available alternative solutions, and that a universally designed solution may not be as effective at promoting dressing task independence compared to a customized solution.

xiii Chapter 1

INTRODUCTION

Dissertation Context

Fashion as a user-centered design domain is relatively novel (Gwilt, 2015). As noted by Gwilt (2015), fashion design is motivated by commerce and economics, rather than as a solution to a design problem based on a user-centered challenge. Fashion designers are traditionally trained to approach the design of clothing from only an aesthetic perspective, with “success” based on a financial value system. In this way, the fashion “user” is an abstract concept of either an aspirational muse (i.e. such as a famous actress or singer), or as a homogenized “target market:" an amalgamation of the desired consumers’ demographics and psychographics (Kennedy, Stoehrer, & Calderin, 2013). For this reason, it is novel for a fashion designer to approach the design of clothing from the point of view of a specific user’s needs (e.g. as a design problem based on user challenges). Conversely, functional design of clothing is akin to apparel engineering, in that a specific user’s functional needs inform the design (Watkins & Dunne, 2015). Rather than aesthetics and market sales as motivation, solving a user-centered problem motivates functional design. Through engagement with a specific end-user (via interview, observation, or simulation) the functional designer determines functional metrics that the clothing must meet in order for the design to be a “success” (Bye & Hakala, 2005). Designing apparel for a user with a disability often falls into the “functional design” domain (Watkins & Dunne, 2015) because the user is seen not as a typical

1 fashion customer, but as a design problem to be solved via functional metrics. Moreover, individuals with disabilities are often viewed as a small and homogenous target market. It is also unclear who the “end user” is for this market: individual or caregiver. For example, if the individual is a child with a disability, they may be reliant on a caregiver/parent who mediates the child’s clothing purchases, clothing style, wear habits, and dressing task performance. Children with disabilities are at risk for delayed development in self-care skills, such as dressing themselves. By designing apparel that can potentially improve independence, we can also potentially reduce the strain experienced by caregivers (Butler, 2009). Depending on the disability of the child, the caregiver may provide minimal to total task assistance. If a child does not have the opportunity or means to learn these tasks, such as dressing, they may be dependent on caregivers for the duration of their adult life. Therefore, parents report concerns about their children’s’ social participation, peer group acceptance, education, and vocational needs and arguably most importantly independence (Hallum, 1995). Therefore, the goal of this thesis was to combine the design domains of fashion design and functional design in order to address specific user needs of an underrepresented and marginalized target market (children with disabilities) and through addressing those needs, improve independence ADL task performance for children with disabilities and their caregivers. By combining these design domains, we can have not only the potential for creating impactful designs addressing real user needs, but also the potential for creating new frameworks for the design community that will direct design for disability research practices and products.

2 Dissertation Overview In order to design apparel products that meet the needs of children with disabilities and their caregivers, we must first ascertain the typical daily challenges during activities of daily living (ADLs) experienced by this population. Currently, there is limited research on apparel designed and tested to promote independence for users with disabilities and enhance quality of life for this population. Moreover, there are siloed domains within the design community, each limited in their approach, process, and metrics for design success. This project aims to: 1) identify the scope of dressing- related ADL challenges of children with motor and/or sensory impairments, 2) assess current adaptive clothing solutions that aim to resolve these challenges in order to identify themes and opportunities in design solutions, and (3) assess the relative performance of custom and universal garment design solutions as compared to mass-market typical and user-defined solutions in a case-study wear trial. Traditional functional and fashion apparel design frameworks are limited by design criteria and the perception of users (Carroll & Kincade, 2007). The key design criterion in functional apparel design is functionality, or how the apparel will be used (Watkins & Dunne, 2015). Less attention is paid to aesthetics or psychosocial aspects of clothing. Moreover, the role of users is limited to the beginning of the design process: as informant of a design problem. The primary focus of the traditional fashion design framework is on visual aesthetics and personal expression (Kennedy, et al., 2013). Functional criteria such as comfort, ease of use, and user mobility are not key metrics. In fashion design, the role of users is limited to the end of the process: as end consumer (Kennedy, et al., 2013). Neither process typically considers users’ broad needs or involves users throughout the design process.

3 Moreover, clothing that is designed for a population of individuals with disabilities traditionally falls within the domain of functional apparel design (Watkins & Dunne, 2015). Design criteria for apparel worn by users in this population usually focus primarily on ease of use by the individual or by the caregiver dressing the individual (Watkins & Dunne, 2015). Garment aesthetics are not typically an essential design consideration. The user with disabilities traditionally has a limited role in the design process: informant with a design problem, with the designer in the role of sole expert stakeholder (Carroll & Gross, 2010). The concept of aesthetic and psychosocially expressive functional apparel for children with disabilities has not been previously reported in the literature, nor has the role of those users not only as informants, but also as co-designers, tester, and evaluators. Therefore, this project used a new approach to traditional functional design in designing clothing aimed at addressing user challenges identified by a heterogeneous sample of children with motor and/or sensory impairments and their caregivers. This sample population collaborated with us over the course of the entire project from problem definition (Aim 1, Chapter 2) to identifying and assessing alternative solutions currently available in the commercial market (Aim 2, Chapter 3) to then designing and testing novel clothing designs that aim to address the broad needs of users comparing functional performance to both clothing the child typically wears and mass market options worn by their typical peers. Therefore, we began by identifying the scope and variety of challenges related to activities of daily living (ADLs) that may impact quality of life for children with disabilities and their caregivers (Aim 1, Chapter 2), using a novel framework we created by expanding upon an existing framework that holistically considers users’ needs (Hall & Lobo, 2017; Appendix A). Next, we surveyed the landscape of “design for disability” clothing to determine themes within the current

4 market of adaptive clothing solutions and shared our findings via an open access resource for individuals with disabilities, caregivers, and related stakeholders (Aim 2, Chapter 3). Lastly, we used these data (Aim 1 & Aim 2) to create clothing design prototypes that combined the approaches of fashion and functional design, with the aim of addressing the identified user dressing-related challenges. These prototypes were user wear tested and evaluated in comparison to the child’s self-selected clothing and a mass market option to determine design “success” (Aim 3; Chapter 4). Note that each of these chapters reflecting the different Specific Aims of this dissertation study is written as a stand-alone article intended for publication purposes. In addition to the authorship of myself and my thesis advisor Dr. Michele Lobo, Chapter 4 also reflects the authorship of Dr. Andrea Cunha.

The Specific Aims originally proposed for this project were: Aim 1: Identify common ADL challenges and related needs for children with motor and/or sensory impairments and their caregivers. Challenge: To discern user challenges and related needs while minimizing researcher bias. Approach: We will survey and interview participants and related stakeholders and analyze the results using grounded theory, a systematic approach that will allow us to identify the functional and psychosocial needs reported by participants that impact their ADL performance and affect their quality of life. Impact: These data will broadly define goals, needs, and criteria necessary to inform future design solutions, including the design solution for Aim 3, that will aim to address a user cited ADL challenge, in order to potentially positively impact quality of life and have greater likelihood for product use.

Aim 2: To assess current adaptive clothing solutions that aim to resolve these ADL related challenges in order to identify themes and opportunities in design solutions and share this as a resource for users with a broad range of disabilities. Challenge: To assess the landscape of adaptive, custom, and/or inclusive clothing and dressing aids across academic and popular databases to create a comprehensive and accessible resource. Approach: We will perform an integrative review of commercial clothing for people with special needs and design for disability academic literature, with the initial focus for children with disabilities as primary users. Impact: The resource will present options, tools, and related guides that will aim to address the functional, aesthetic, expressive, and accessible clothing-related needs of this underrepresented population.

Aim 3: Develop and test apparel that aims to address a specified ADL challenge, meets the broad needs of users, and is accessible and applicable across individuals with varying disabilities. Challenge: To design inclusive apparel that aims to improve ADL performance while addressing users’ motor and/or sensory challenges. Approach: We will apply the tools compiled in Aim 2 to identify users’ broad product needs related to a specified ADL and explore apparel patternmaking and construction techniques to create design solutions. We will iterate and test with users/stakeholders to identify solutions that meet their needs. Impact: These design solutions will aim to address a specified ADL challenge for a variety of users underserved and underrepresented by the current fashion industry.

6 Innovation This project was innovative in that it incorporated end users throughout the iterative design process utilizing our expanded version of the FEA2 design model merging fashion and functional design domains (Hall & Lobo, 2017; Lamb & Kallal, 1992). As described above, traditional functional apparel design frameworks are limited both by design criteria and user participation. In contrast, this project aimed to address the functional, expressive, aesthetic, and accessibility needs of users while they actively participate throughout the entirety of the design process. This project was innovative in that we developed a framework combining fashion design and functional design metrics that can be used in applied practice in both design for disability research and for the design of commercial adaptive clothing. The 5 F

Framework (Fit, Function, Fabric, Fastener, Fashion) are specific areas of design consideration that we determined need to be addressed by designers and/or apparel brands manufacturing clothing aiming to meet the needs of this population of users. This project was innovative in that it developed prototypes that aimed to address said identified needs. We developed novel designs based on the reported needs of users: children with disabilities and their caregivers. These populations are underserved and represent a broad range of abilities and design considerations, so holistic needs assessment coupled with development and testing of novel designs can facilitate products that potentially improve user and/or caregiver quality of life.

7 Chapter 2

NEEDS IDENTIFICATION FOR DESIGN: IDENTIFYING THE SCOPE OF ACTIVITY OF DAILY LIVING CHALLENGES AND RELATED NEEDS FOR CHILDREN WITH SENSORY-MOTOR IMPAIRMENTS AND THEIR CAREGIVERS

Abstract

Background Activities of Daily Living (ADLs) are basic tasks during a typical day that individuals complete for self-care. These skills can present a challenge for both children with disabilities, and their caregivers. For these children, dependence on caregivers for these tasks can potentially lead to decreased quality of life and lack of independence. In order for designers to create products that aim to address and assist with ADL challenges, they first must broadly assess the target users’ needs. Aim This study aimed to comprehensively identify the broad ADL challenges and associated needs of children with a variety of motor and/or sensory impairments using a method that gathered the perspective of both children and primary caregivers utilizing the expanded FEA2 model. Methods We used survey and semi-structured interview methods to determine primary ADL related challenges for this population. These data were analyzed using qualitative software (NVivo), identifying frequencies of responses and key themes. Findings 30 survey respondents were caregivers of children with disabilities and reported frequency and type of ADL challenges, with independent dressing most frequently reported. Ten families of children with disabilities were interview participants (n=20) and described themes related to clothing and dressing, following the FEA2 model. Conclusion These findings will positively impact the product design community by providing user-centered data for effective products aimed at children with disabilities

Keywords Activities of Daily Living, Product Design, Qualitative, Disability

8 Background Children with motor and/or sensory impairments may have significant challenges in the self-care domain of activities of daily living (ADLs) that can negatively affect their quality of life (QOL). ADLs are functional tasks that are fundamental for facilitating an individual’s participation in the home, school, and community environments (James et al., 2013). The World Health Organization’s International Classification of Functioning, Disability, and Health categorizes ADLs as part of the domain of ‘Activities and Participation’ and considers them life tasks required for self-care and self-maintenance (Peters-Brinkerhoff, 2016; James et al., 2013). These include the fundamental skills typically needed to manage basic physical needs, comprising the following five areas: (1) grooming/personal hygiene, (2) dressing, (3) eating, (4) toileting/continence, and (5) transferring/ambulating (Mlinac, 2016). Children with disabilities may have impairments or developmental delays that impact their independent performance of ADLs (James et al., 2013). ADL performance is a high priority for parental caregivers (Cusick et al., 2006). Moreover, increased dependence on parents to assist a child with self-care tasks leads to lower perceived QOL of the child by those parental caregivers (Narayanan et al., 2007). The ability to engage in personal care is a key component of functional independence (Mlinac, 2016). ADL dependence is correlated with poorer QOL for the child, increased health care costs, and increased risk of mortality and institutionalization

(Mlinac, 2016). The first step in designing products to address the ADL challenges of children with disabilities is identifying those challenges and the needs of users related to the potential products. The objective of needs identification is to determine potential barriers the user might encounter when performing a certain task (Blasco et al., 2014). In order to identify the user’s needs, one must first understand how the user performs said task,

9 noting the interaction between the user and task-related devices to clearly understand the user’s functional characteristics. Identification methods often include asking the user directly to report task-related challenges, such as through surveys (Choi & Sprigle, 2011), interviews (Blasco et al., 2014), or focus groups (Morgan, 1997). One limitation has commonly been that in many cases, related stakeholders, such as family members, caregivers, and health professionals, are not included as sources (Choi & Sprigle, 2011; Blasco et al., 2014). In other cases, the user may not be included as an information source, relying instead on domain-specific experts as the sole informants of users’ needs (Martin et al., 2008). Another challenge to assessing the ADL-related challenges and needs of children with disabilities is a lack of a model that guides designers in assessing and identifying the needs of these users in a broad and comprehensive manner. This study aimed to comprehensively identify the broad ADL challenges and associated needs of children with a variety of motor and/or sensory impairments using a method that gathered the perspective of both children and primary caregivers. We gathered information from child and primary caregiver participants using a survey and in- person interviews. To guide the survey and interviews, we used a comprehensive, novel needs assessment model expanding upon Lamb & Kallal’s (1992) Functional, Aesthetic, and Expressive (FEA) Fashion Model. The expanded FEA2 Model, which incorporates the additional needs domain of Accessibility, guided us to identify the broad needs of users (Fig. 1, expanded FEA2 model, Hall & Lobo, 2017). Consequently, we gathered information about the functional needs related to design for individuals with disabilities. These are the needs most often assessed for traditionally when assessing the needs of individuals with disabilities. Moreover, we gathered information about the broader psychosocial needs of users related to aesthetics, expressiveness, and accessibility of

10 product design that are critical to consider in order to maximize psychosocial benefits and dosage of product use (Lamb, 2001; Carroll, 2015). This study is significant because it employed user-centered, qualitative research methods to gather information about ADL challenges and associated needs of children with motor and/or sensory impairments. This is important information that can be used to guide the development of products with the potential to assist ADL performance for this population. Some wearable devices engineered to aid ADL performance for individuals with disabilities, especially devices addressing mobility impairments, are beginning to be designed according to user-centered methods like the one proposed here. Products designed using these methods have the potential to support user independence, improve QOL, and facilitate social participation (Poulson & Richardson, 1998).

Functional Needs Expressive Needs

User

Aesthetic Needs Accessibility Needs

Figure 1 FEA2 Model (Hall & Lobo, 2017)

11 Methods This study utilized a qualitative phenomenological research approach using qualitative and quantitative analysis of textual narrative data to better understand experiences among participants while minimizing researcher bias (Creswell, 1998; Mayoh et al., 2015). This approach is based on an emergent and dynamic process divided into phases with analysis following each phase to allow for the detection of themes (Crewell, 1998; Waters, 2000). In order to understand and identify the needs of children with disabilities and their primary caregivers, we utilized two needs identification methods: survey and interviews.

Survey

First, general information about ADL challenges was collected via an online survey (see Appendix B). The online survey was shared via 13 online forums, including Facebook, Twitter, and various disability support groups. Survey questions were primarily short answer format with some multiple-choice items. The survey was broadly distributed, but aimed to target families of children with disabilities, with the goal of gathering responses from at least 20 participants in this category (Boddy; 2016; Creswell, 1998; Sandelowski, 1995). Ninety respondents completed the full survey. Of those 90, 30 were caregivers of children (reported ages birth to 18 years old). These 30 surveys were used for data analysis because they matched our target demographic. Textual data were coded (Urquhart, 2013; Richards, 2015) using NVivo qualitative analysis coding software (QSR International Pty Ltd.; Bazeley & Jackson, 2014) to identify emergent themes. Survey findings were used to gain understanding and empathy for the sample population: children with disabilities and their families. Moreover, these findings aided in determining challenges and needs related to ADLs to guide the creation of the second needs identification method: in person interviews.

12 Interviews Thematic analysis of the survey data guided the development of topics for in- person, open-ended interviews with 10 children with self-identified motor and/or sensory impairments and their primary caregivers (Table 1). This sample population was recruited from the local community and followed the phenomenological study recommended sample size of 10± 2 participants (Creswell, 1998). Inclusion criteria were an age of 5-14 years, self-identified motor and/or sensory impairment, and residence within a 100-mile radius from the University of Delaware. Exclusion criteria included current hospitalization or fragile medical condition. Interviews were conducted at a location convenient for families, such as in the home, on the university campus, or at a place within the community. Parental consent and child assent were obtained prior to participation.

Table 1 Demographic Characteristics of the Interview Sample (F= female, M = male)

Age (years) Gender Diagnosis 6 F Down Syndrome 7 F Down Syndrome 7 F Cerebral Palsy 7 M Arthrogryposis 9 M Cerebral Palsy 9 M Spina Bifida 14 M Down Syndrome & Autism 14 F Cerebral Palsy 14 F Cerebral Palsy 14 M Duchenne’s Muscular Dystrophy

Interviews were conducted using a semi-structured format. Questions were used as conversation prompts in order to elicit information related to the child’s typical daily

13 activities, such as “Tell me about school today”. Follow-up questions were asked as necessary to promote in depth information based on caregiver and child narrative storytelling (see Appendix C).

Coding and Analyses Survey and interview responses were coded (Urquhart, 2013; Richards, 2015) via the same protocol using NVivo software (Bazeley & Jackson, 2014) across four iterative phases: (1) open descriptive coding, or organizing the responses into descriptive themes, (2) contextual axial coding, or organizing the descriptive themes into themes based on context, (3) selective coding, or organizing the contextual themes into broader concepts, and (4) theoretical coding, or creating/relating theory to the broader concepts (Urquhart,

2013). For example, a general descriptive code could be “a typical daily challenge”, followed by a more specific axial code of “toileting.” “Toileting” could be grouped into a broader selective code of “ADL” that would then be applied to the theoretical code of “function”, as part of the FEA2 theoretical model. Interviews aimed to determine the most reported and most important issues related to ADL and FEA2 needs for the sample population. Frequency of specific ADL challenges are reported. All survey and interview findings were coded by two independent raters. Interrater reliability is reported using Cohen’s Kappa coefficient.

Descriptive statistics were used for survey data to report the major themes and the number of times each theme was referenced. Descriptive statistics were used for interview data to report: (1) the major themes and the number of times each theme was referenced and (2) the overall trends for major themes.

14 Results

Survey

The 30 survey respondents who were caregivers of children with disabilities reported a range of impairments for the children with gross motor skills and sensory sensitivity as the most commonly reported themes (Table. 2). Inter-rater reliability of coding was excellent with Cohen’s Kappa coefficient = 0.957, or 95.7% agreement between raters.

Table 2 Emergent themes regarding impairment, number of respondents reporting each theme, and number of times each theme was referenced

Impairment Themes Respondents Reporting References Gross Motor Skills 17 100 Sensory Sensitivity 16 51 Weakness 7 24 Fine Motor Skills 6 15 Developmental Delay 5 11 Vision 4 8 Oral/Vocal 3 6 Seizures 2 4 Auditory 1 2

When asked to describe a significant challenge that the children and/or caregivers struggle with on a typical day, the most commonly reported challenges were in the area of self-care activities. Self-care activities include dressing, feeding, grooming, and toileting. Within the domain of self-care, dressing was the most often reported daily challenge by the respondents (Table 3). Inter-rater reliability of coding was very good with Cohen’s Kappa coefficient = 0.815, or 81.5% agreement between raters.

15 Table 3 Emergent themes regarding daily activity challenges, number of respondents reporting each theme, and number of times each theme was referenced

Activity of Daily Living Respondents References Themes Reporting Self-care Activities (general) 9 22 Dressing 5 10 Public or Social Activities 4 8 Feeding 3 6 All Activities 2 4 Grooming 2 4 Toileting 2 4 Transitioning 2 4 Reaching 1 2 Walking 1 2 Writing 1 2

Since the survey data indicated that self-care activities, especially dressing, are an important ADL challenge for many children with disabilities and their caregivers, interview questions for the subsequent sample population focused on ADLs in general and dressing-related challenges in particular.

Interviews Open and axial coding identified the general conversation topics. Topics related to clothing, discussion of the child’s disability, issues related to the child’s appearance, description of the child’s lifestyle, physical and occupational therapy schedule, caregiver’s goals, and discussion of the child’s social activities.

Selective coding themes from the interviews categorized the respondents’ general discussion. Categories of discussion included the child’s ADL challenges, QOL, including social participation, issues related to the child’s clothing-related appearance, the child’s disability or “functional characteristics”, and caregiver focus on the goal of increasing the child’s independence (Figure 2).

16 For the specific theme of “ADL Challenge,” self-care activities were commonly reported, with “dressing” being the most frequently discussed challenge. For example, a 14-year-old female participant with cerebral palsy, reported:

“My mom usually dresses me, but on weekends I have time to practice getting dressed. To do it over and over and over again until I can eventually get it down with being independent and being able to dress myself actually.”

Accessibility issues impacting daily function was the next most commonly discussed ADL-related challenge, followed by the remaining categories of general, unspecified challenges, balance and strength challenges during tasks, sensory sensitivities during tasks, and challenges with the specific ADL tasks of eating and toileting. Within the most commonly reported ADL issue, the dressing task, we explored themes of functional challenges for our interview participants’ responses, as well as related expressive, aesthetic, and accessibility (FEA2) themes that were reported to affect QOL for the participants.

18 Figure 2 Themes from the interviews. Numbers in parentheses reflect the number of times each theme or issue was mentioned across all interviews.

User Needs: Functional Challenges Participants were prompted to discuss the child’s diagnosis and functional limitations and how related characteristics impacted dressing. Issues with fit related to a child’s body shape were commonly reported, as in this example from the mother of a 14- year-old male participant with Duchene’s Muscular Dystrophy:

“It's kind of hard to find pants that fit him, because they fit around the waist then I got to cut about 2, 3 feet off his pants, because the waist--the size with his legs is off because...that's what's hard about finding clothes for him that fit, because his legs are so short compared to regular kids.”

Participant responses focused on a variety of gross and fine motor challenges related to the dressing task. One mother explained:

“It's all in mobility, but I can't really say that he can--anything from putting pants on, taking pants off, he has a hard time. And you pretty much have to do it for him.”

The mother of a 9-year-old participant with spina bifida, reported:

“He doesn't know that there are different types of pants. What we've done to make them very functional is that we always wear some type of sport pant like this that just has elastic, pull-up, because that way he can do that independently and not have to worry about, um for him standing balance is an issue so if he were going to stand up to attach his pants...he needs to hold on with one hand. So, it's really hard to do, so this way it makes him more independent if he has some kind of elastic waist pant situation.”

The mother of a 14-year old male participant with Downs Syndrome and Autism reported:

“He's not able to do buttons, snaps. He doesn't have the strength to do snaps. We're working on it. He's not able to do buttons. Zippers...not

19 able to do, like the small zippers, anything like that. Any kind of jeans, or something like that. I would have to help him with. I would have to do that.”

Another functional challenge for participants performing the dressing task related to the child’s sensory sensitivities, as reported by a mother:

“I know that he's--I'm going to gear towards softer cotton and I'm going to gear towards things that are a consistent fabric, not different--I wouldn't put him in a shirt with two different textures. Do you know what I mean? Something to look for--when I'm looking for his clothes, and I'm picking out what he's--what I'm purchase--what I'm even going to purchase, it's going to be fabric that's consistent, that doesn't have any-- only one texture to whatever it is--and it's going to be relatively light, like relatively cottony or cotton and Lycra.”

The child’s challenges with motor planning could also impact the steps of dressing, as reported by the mother of a 7-year-old female participant with Down Syndrome:

“She really does want to do things for herself and it’s like I--she is really one of those people that she really wanted to get dressed, she wanted to be able to dress herself and it’s a lot too. It’s a process like you really have to really talk about it. Like you have to put on your underwear on first and then put our pants on and then how we can tell if it’s on the front or the back for either your underwear, your pants, everything, you know we really had to kind of work on that.”

Regardless of the child’s specific functional challenge with dressing, parents commonly reported the goal of functional independence with the task. One mother explained:

“Yes, that is always our goal with her is that she would be able to be independent with what she does and she really does wants to be independent. She, thank goodness, has that attitude that she really wants to do things herself and tell me 'No, I'm going to tie my shoe' because you know, I don't know if either of you have children, but like getting ready in the morning, getting four people ready in the morning is so crazy and I'm like "Oh my god I just want to tie your shoes for you". You don't have time and she'll be like 'no I want to tie my shoes' so when we go through the whole you know, even if it adds a couple of extra minutes I'm always

20 thankful that she wants to do that. That she's not just going to let me tie her shoes even though I'm kind of thinking, you know, it’s easy to fall for me to fall in that trap of like, let’s just do this really quick so that we can get going and make the bus.”

The mother of a 7-year-old male participant with arthrogryposis multiplex congenita, stated:

“As a Mom, I just want him to be able to function as much as possible without relying on another person, because I know there will be times when he's just not going to have an adult or network there to help him. He needs to be able to take care of himself, just generically. He may need tools for certain things, but I want him to be able to do things on his own if he has to.”

User Needs: Aesthetic Considerations

In addition to user needs related to functional challenges, participants were asked to describe their preferences with clothing aesthetics. Parents reported the child’s preferred colors, patterns, and styles. For example, the mother of a 7-year-old female participant with cerebral palsy stated:

“She loves hearts, pink. She's very different. She likes different types of prints. She picked all of these out herself. And then this is, this is, she loves dresses.”

The mother of a 14-year-old female participant with cerebral palsy described:

“When we looked for stuff this year she got Adidas, not sweat pants but you know, athletic pants or long Adidas shorts. We literally were buying shorts in the boy’s department because she wanted that real - and we balanced that out with sort of cuter girly tops and blouses with these sort of long sporty, sporty pants and stuff.”

The mother of a 7-year old with Down Syndome, explains her daughter’s preferences with style:

“Yeah, but she definitely like, you know, how they have the pants, like the bottom of the pants have a set of like really big kind of ruffles and they are kind of like wild colors and I noticed the first time because she's usually very easy going and I can usually put her in anything and she's like okay. She was like "No, I’m not wearing that!". I’m like well you have to do this. You can do this, you know for just like 20 – 30 minutes, then we'll take it off and wear something you like. But she's also been- but she really likes everything.”

User Needs: Personal/Social Expression In addition to functional and aesthetic considerations, participants discussed personal style preferences and identity, as well as clothing as a tool for social acceptance. For example, one child describes her own personal style:

“Probably I'm in a girly stage, but I'm trying to grow out of it, and I do like sporty stuff.”

Whereas one mother explains the importance of her son’s clothing expressing his identity and facilitating social acceptance:

“If you're talking about specific to clothing, to me it's really important that--not that he has to like, keep up with the Jones, so to speak--but it's really important that he is able to--we reflect who we are. So, I've always tried to work--he is going to, he's always going to be matched up. He always dresses well.”

“Wearing the same color shoes as your shirt is a thing. It's a status. It's a thing, and it shows that you are current! That you're with the times! You are, you are a part--it helps you to be a part of your peer group. I cannot tell you how much influence these little messages, and every time people with come and say--it's not like I go to people and say, "Hey! Know what I'm doing behind the scenes? I'm strategically planning outfits." But I am! I mean, I will labor over--it's not about--I will labor over it, as to how is this going to be perceived, and is it going to be beneficial to him? That's what I--so I'm thinking about that. That's a huge part of the mix. Is he going to be able to wear it? Is he going to be able to tolerate it? And is it

22 going to socially benefit him? Because there is a whole bunch of stuff that he probably could wear, and could tolerate, but it's not going to be beneficial to him.”

User Needs: Clothing Accessibility Lastly, the theme of accessibility was common among participant responses. While discussing the child’s needs and preferences, parents often commented about the importance of the right adaptive clothing being both available and affordable. For example, one mother discussed the importance of the right designs being available:

“It's kind of like little kids’ clothes. They're ok. They have the elastic, you know they have the extra material in the backside for you know, the underpants? But when they get older, then they don't. There's a need for it because I'm sure that [child’s name] is not the only kid, you know, that is in a wheelchair, that needs clothing that he can go out and not wear--we all want to wear sweatpants, all the time. C'mon, we do!”

The mother of a 6-year-old female participant with Down Syndrome described concerns for future availability:

“It can definitely be...I foresee it getting challenging as she gets older. She's still young, so it--she still in that--well one, she's young and she's kind of in a size that's appropriate for her age, like right now she's in a 5/6 which is not typical of a 5 1/2 almost 6-year-old. But now, like so-- I'm fortunate that I have her older sister who is growing and aging and she's aging out of those like kid, like Gymboree clothes and getting into like, if you're talking name brands, like Justice, and stuff. That--t's jeans and it's not things that are like flexible for her. So, like, I foresee this coming down the line. Let's put it that way. I'm still very fortunate right now that we can...leggings are all the rage, and she's still in that like child frameset for clothing, but once we get into that like "tween," we're screwed. She's either going to have to suck it up or we're going to have to have clothing made for her.”

One mother described the importance of affordability while reiterating the relevance of adaptive clothing style:

23 “Unless you're going to start your own line of stuff which would--that would be awesome too, you know what I mean. It's not to say that it has to be a Target brand or has to be this brand, or whatever, you know? I don't need Michael Kors to do it. I can't afford his stuff anyway, you know what I mean? Unless he's--you know what I mean? But whoever does things like this, they need to be mindful of keeping it cool. Not just--it has to be accessible, but it still has to be cool.”

Discussion and Implication

Results from the survey and interviews provided insight into significant challenges that children with disabilities and/or caregivers struggle with on a typical day. For this sample population, there is a strong focus on the area of self-care activities

(Table 3). Self-care activities include dressing, feeding, grooming, and toileting. Within the domain of self-care, dressing was the most often reported daily challenge by the respondents. Major issues raised by the interview participants further explored ADL challenges and needs specific to dressing and produced four themes corresponding to the FEA2 model (Fig. 1). These themes identified functional challenges, personal/social expression, aesthetic considerations, and clothing accessibility. Functional needs related to clothing for individuals with disabilities is a common theme in the literature (Carroll, 2015), with aesthetic and expressive needs often cited as important, albeit commonly overlooked, design considerations (Stokes & Black, 2012). Likewise, functional needs were a commonly reported concern of study participants.

Issues with fit, closures, and typical clothing design details influenced participants’ choice of clothing and performance in the dressing task. As stated by Stokes and Black (2012), adolescents have a desire for aesthetically pleasing clothing, regardless of ability level. Study participants similarly reported on their preferences for clothing styles, colors, and design details. Expressive needs related to clothing for individuals with disabilities often focuses on hiding any impairments

24 (Kaiser, et al., 1985;1987; Stokes & Black, 2012), such as with modest clothing. In contrast, in this study, child participants described wanting clothing to express their personalities, while parents described the use of clothing as a medium for social acceptance. In this way, clothing is not used to conceal individual impairment, but rather to affirm self-worth and enhance social participation (Hall & Orzada, 2013). Study participants also described issues related to clothing accessibility, a concern often unidentified in the literature. In the literature, the market size for this population is often criticized for being too small for fashion industry interest and commercial success, but that perception of and interest in the adaptive clothing market is changing (Weinswig, 2018). As of 2012, there were over 30 million Americans with motor impairments alone. Those individuals have similar clothing-related needs as the broader community, coupled with many of the clothing barriers identified in the current study and other studies (Kabel et al., 2017). Key barriers include limited availability of appropriately designed items and the increased cost of adaptive clothing (Kabel et al., 2017). These key barriers emerged in the current study as caregivers reported that clothing appropriate to their child’s particular challenges and needs was difficult to find, too expensive, or limited in style choices. Finally, because this study was exploratory in nature, the samples for each study phase consisted of a modest number of participants who represented a wide range of ages as well as both physical and cognitive impairments. That helped us achieve the project aim of comprehensively identifying the broad ADL challenges and associated needs of children with a variety of impairments using a method that gathered the perspective of both children and primary caregivers. Future research with larger participant pools is needed to identify whether there are specific ADL challenges that are experienced by groups of individuals with the same impairments and that differ across impairments. In

25 addition to allowing for greater generalizability of findings, such research would help broaden our understanding of consumer needs and positively impact the design process for ADL-related products for consumers with a range of abilities and needs.

26 Chapter 3

ASSESSING THE ADAPTIVE CLOTHING DESIGN LANDSCAPE: DEVELOPING A COMMUNITY RESOURCE FOR CLOTHING THAT PROMOTES INDEPENDENCE FOR USERS WITH SPECIAL NEEDS

Abstract Background Independent dressing is one of the self-care activities, also known as activities of daily living (ADL), that are basic tasks that individuals need to perform during a typical day. The ability to dress independently may be limited for children with disabilities, leading to reliance on a caregiver for self-care. Aim This paper aims to describe the co-development process used to create the online dressing resource, FashionAbled.org, which was developed to improve user access to current, practical, and diverse information and resources about dressing challenges for users with special needs, their caregivers and families, health professionals, and the extended community. Methods An advisory group of ten children with disabilities and their primary caregivers provided guidance for website development through previously collected interview data. We used integrative literature review of academic and popular sources to create website content. Final website content results and navigation was guided by the advisory group. Findings The FashionAbled.org website featured multiple pages including dressing help, shopping guide, and how-to guide for adapting clothes. Advisory group members were positive about content and website organization. Website analytics revealed 465 unique views in first 2 months of website launch. Conclusion These findings are important in that they document the process for a community-based website that highlights needed resources for adaptive clothing and dressing assistance.

Keywords Activities of Daily Living, Website Design, Community Resource, Disability

27 Introduction As of 2012, 12.8% of the US population was reported to have a disability (Yang & Hock, 2018). Although there are over 40 million Americans with disabilities, there are limited resources available to the general community to provide guidance for self-care activities, such as independent dressing, (Hughes, Schuster, & Nelson, 1993) and related product information and/or product availability (K. E. Carroll & Kincade, 2007). Moreover, the resources available tend to be dated research studies (Azrin, Schaeffer, & Wesolowski, 1976; Inglesfield & Crisp, 1985) or specific to a particular patient population (Banerjee, Kundu, & Sarkar, 1995; McKelvey, Sisson, van Hasselt, & Hersen, 1992) neither of which may be accessible and applicable to individuals with varied disabilities and their caregivers in the general community.

Independent dressing is one of the self-care activities, also known as activities of daily living (ADL), that are basic tasks that individuals need to perform during a typical day (Milnac & Feng, 2016). Other examples of ADLs include bathing/personal grooming, mobility, eating, and going to the bathroom (Milnac & Feng, 2016). ADLs are a key component for individual participation in social environments both inside and outside of the home (James, Ziviani, & Boyd, 2014). For children with disabilities, the ability to independently dress may be limited, leading to reliance on a caregiver for self- care (James et al., 2014). Dependence on caregivers for self-care tasks is associated with decreased quality of life (QOL; Milnac & Feng, 2016). Furthermore, the ability of a child to dress independently is considered an important milestone in child development (Hughes et al., 1993) and has been identified as a priority for caregivers of children with special needs (Cusick, McIntyre, Novak, Lannin, & Lowe, 2006). Therefore, by addressing a child’s ability to perform self-care ADL tasks, such as independent dressing, we can potentially improve that child’s QOL.

28 The provision of easily accessible, practical, and current information and resources regarding self-care activities, such as dressing, for individuals with special needs is a critical component of an effective effort to support functional independence for this population. This paper aims to describe the co-development process used to create the online dressing resource, FashionAbled.org, which was developed to improve user access to current, practical, and diverse information and resources about dressing challenges for users with special needs, their caregivers and families, health professionals, and the extended community.

Conceptual Framework

Participatory Design Approach

This project utilized a participatory design approach. Participatory design emphasizes the role of the user throughout the design process (Gwilt, 2015). It assumes the user has explicit domain knowledge and is a principal stakeholder in the project. At its core, this approach is not defined by specific rules and stages, but rather by an adherence to the principle of users’ participatory value (Simonsen & Robertson, 2013) Thus, this approach has the potential to yield higher quality and more impactful outcomes (Simonsen & Robertson, 2013). For this project, we identified a sample population of users: children with motor, sensory, and/or cognitive impairment and their caregivers.

Theoretical Model Selection criteria for clothing and products to be featured on the FashionAbled.org online resource was guided by the FEA2 (Functionality, Expressiveness, Aesthetics, Accessibility) Model (Hall & Lobo, 2017). This model is based on the Lamb and Kallal Consumer Needs Model (1992), from the apparel design

29 domain, integrated with the design process of engineering (EDC process; McCann, 2015) and the philosophy of user-centered design (Keates & Clarkson, 2003). User-centered design considers the end-user as having heuristic knowledge of critical importance to the end design (Keates & Clarkson, 2003). Apparel designers Lamb and Kallal (1992) proposed that individuals need clothing to (1) perform a certain function, (2) express personal style, and 3) be aesthetically appealing. Hall and Lobo (2017) extended this model to include the need for clothing accessibility, meaning products should be available to the end user and not be cost-prohibitive. The Cambridge Engineering Design Centre proposed that clothing be socially acceptable and practical (McCann, 2015). Social acceptability for a product is defined as acceptable appearance, quality, interest, personal expression, and lack of stigmatization (McCann, 2015). Products are considered practical if the product is deemed to have the appropriate cost, compatibility, reliability, and usefulness (McCann, 2015). Our FEA2 Model is user-centered and proposes that individuals require clothing and related products to perform properly (functional and practical), communicate personal style (expressive and social acceptability), be appealing visually (aesthetic and social acceptability) and be accessible to varied user populations (practical) (Figure 3; Lamb & Kallal, 19; McCann, 2015; Hall & Lobo, 2017).

30 Expressive

Functional User Aesthetic

Accessible

Figure 3 FEA2 Model (Hall & Lobo, 2017)

Methods

Overview of Developing the Online Resource Development of the FashionAbled.org adaptive clothing online resource involved an iterative process spanning a 12-month time period. As an initial step, an advisory group of caregivers of and children with disabilities was established to represent the target end users who would provide guidance and advice throughout the development process. Families contributed to initial brainstorming, provided feedback on the website design and navigation, tested and reviewed the beta website, and provided ideas for future development. For this participatory process, it was important to ensure that end-

31 user needs, concerns, and values were not overlooked, otherwise there was risk of the end product not being useful or utilized (Keates & Clarkson, 2003; McCann, 2015). The development process was informed by a comprehensive assessment of the current literature on clothing design for disability and dressing task assistance (Banerjee et al., 1995; Hughes et al., 1993; Inglesfield & Crisp, 1985; Kabel, Dimka, & McBee- Black, 2017; Keates & Clarkson, 2003) as well as the current commercial market of adaptive clothing and occurred across 3 phases:

1. Initial End-user Consultation, with our advisory group of end users (caregivers and individuals with disabilities, due to cognitive, motor, and/or sensory impairment)

2. Content and Web Development, with consultation from our advisory group

3. User-Testing and Feedback, regarding acceptability and usefulness of the FashionAbled.org website

Phase 3 was followed by dissemination to the broader community.

Phase 1: Initial End User Consultation

Participants. Ten families of children with disabilities were recruited from the greater Mid-

Atlantic area of the United States to serve on our advisory group and were interviewed to assess children’s challenges with dressing and clothing-related needs. Participants were selected for the purpose of creating a heterogeneous sample in relation to children’s age, type, and level of need. A total of twenty participants (ten children and ten caregivers) provided assent/consent and completed interviews related to their dressing needs. Results of these interviews have been published in detail (Hall & Lobo, in prep). Child

32 participants ranged in age from 6 to 14 years of age, with a mean of 10.1 years (SD 3.5) and 50% of the children were female. Caregiver participants ranged in age from 37 to 51 years of age, with a mean of 42.7 years (SD 4.3) and 100% of the caregivers were female (Table 4). The majority of families lived in the state of Delaware (90%) and 10% lived in Maryland. Most caregiver participants were reportedly employed (60%) with others reportedly homemakers (30%) or students (10%). The majority of participants had a household income of over $80,000 (70%) with the remaining participants split between $60,000 – 79,000 (10%), $35,000 – 44,999 (10%) or under $15,000 (10%).

Table 4 Demographic Characteristics of the Sample Population (F = female, M = male)

Child Age Child’s Child’s Medical Caregiver’s Age Caregiver (years) Gender Diagnosis Relationship 39 Biological 6 F Down Syndrome Mother 42 Biological 7 F Down Syndrome Mother 44 Biological 7 F Cerebral Palsy Mother 37 Biological 7 M Arthrogryposis Mother 39 Biological 9 M Cerebral Palsy Mother 44 Biological 9 M Spina Bifida Mother Down Syndrome & 48 Biological 14 M Autism Mother 51 Biological 14 F Cerebral Palsy Mother 43 Biological 14 F Cerebral Palsy Mother

33 Duchenne’s Muscular 40 Biological 14 M Dystrophy Mother

The interview process aimed to better inform us about dressing and related challenges among users with special needs. Dressing challenges were assessed over the course of a semi-structured interview, with general conversation topics, such as the child’s typical daily dressing routine, issues related to clothing, including style, selection, and availability, and any related caregiver goals (Aim 1, Chapter 2). Participants were also asked to indicate reasons they might visit an informational website about dressing challenges and adaptive clothing, content areas of interest, and preferences for site language and navigation. Finally, participants were asked to provide input on website design concepts (i.e. logos, layout, and appearance) to be included in the final online resource. These in-depth interviews aimed to provide information to guide design projects related to adaptive clothing as well as the development of the current online dressing and adaptive clothing resource. All aspects of the study were approved by the University of Delaware’s Internal Review Board (IRB).

Data Analysis Responses from the interview were collected and analyzed as described in Chapter 2. In brief, the interviews were audio-recorded and coded using NVivo qualitative software (Bazeley & Jackson, 2013). The coding process allowed us to identify themes related dressing, clothing, and related challenges, including access and preference for clothing-related information.

34 Phase 2: Content and Web Development Once clothing-related issues were identified, content development occurred via multiple stages throughout the development process. First, a preliminary site structure, or wireframe, was developed in consultation with the advisory group to identify key content areas desired for the website. Our focus was to compile quality information and resources about the key areas of need identified by our participants rather than creating entirely new material. As such, the next step in the content development process was to review existing resources related to desired content areas through a comprehensive integrative review. The integrative review process included five steps: (1) defining the problem, (2) academic literature search and scope of the commercial market for adaptive clothing (3) literature evaluation and commercial clothing options assessment, (4) analysis, and (5) selection (Russell, 2005; Whittemore & Knafl, 2005).These topics were explored within the body of knowledge of health sciences and apparel design disciplines using PsychInfo and WorldCat library databases, as well as internet search engines Google, YouTube, Instagram, and Pinterest, to ensure the results would be applicable and accessible to the end users. Primary criteria for selecting resources for inclusion was that they be potentially beneficial for individuals with motor, sensory, communication, and/or cognitive impairment across a wide age span. Moreover, we were particularly interested in identifying resources addressing one or more of the defined FEA2 needs of users (Hall & Lobo, 2017), these being functional, expressive, aesthetic, and accessible clothing options. A secondary criterion was that resources should be relevant to apparel products. A tertiary criterion was origin of the material with a preference towards peer-reviewed sources followed by design/industry practice and then popular sources.

35 Phase 3: User Testing, and Feedback Followed by Dissemination of the Website Following Phases 1 and 2, a working prototype of the website was developed. Feedback from the advisory group was solicited to ensure the online resource was appealing, easy to understand, and engaging, before being launched to the general public. Participants were asked to provide feedback about the ease of navigation, whether the content was easy to understand and informative, how much they liked or disliked the images used on the website, their likelihood of engaging with the content features, and overall impressions. These data were noted during in-person interviews or documented via email correspondence. Data were manually coded for contextual themes related to advisory group perceptions. The results were used to create the final iteration of the website. The website was then disseminated via snowballing from the interview participants (email, word-of-mouth) and via social media channels (Facebook, LinkedIn, Instagram).

Results

Phase 1: End User Consultation

Dressing Challenges. Participants reported challenges related to dressing within the domains of clothing functionality in connection to the child’s impairment, clothing appearance and style, and access to appropriate clothing and related products (Chapter 2). Participants described children’s diagnoses, accompanying functional limitations, and how related characteristics impacted independent dressing. For example, one of the participants was a caregiver of a 7-year-old female with Down syndrome. She described her goals and challenges with her child dressing independently:

36 “Yes, that is always our goal with [her] is that she would be able to be independent with what she does and she really wants to be independent. She, thank goodness, has that attitude that she really wants to do things herself and tell me, ‘No, I’m going to tie my shoe’ because you know, I don’t know if either of you have children, but like getting ready in the morning, getting four people ready in the morning is so crazy and I’m like, “I just want to tie your shoes for you.’ You don’t have time and she’ll be like, ‘No, I want to tie my shoes.” So when we go through the whole, you know, even if it adds a couple extra minutes I’m always thankful that she wants to do that.”

Issues with fit related to the child’s physical impairment were commonly reported, as were issues related to limited gross and fine motor skills impacting the dressing task. For example, one caregiver of a 6-year-old female with Down Syndrome described challenges with clothing fit:

“So her stature is much shorter…sleeves will end up long. Pants will end up long.”

Another caregiver described the challenges her 14-year-old female child with cerebral palsy has with fine motor skills and strength during dressing:

“She has a harder time with pants. She can get shorts on, skirts on, but pants because they’re longer for some reason, she gets more frustrated and she was very frustrated and crying the other night because it was the first time putting pants on by herself.”

Most participants reported selecting clothing for the child based on ease of caregiver-assisted dressing, such as clothing made of stretch fabric, elastic waists, and no zippers (Hall & Lobo, in prep). For example, a caregiver of a 7-year-old female with cerebral palsy described her child’s preferred clothing:

“Typically, her pants have to have elastic because we can’t button or zip.”

Both caregiver and child participants reported clothing style preferences, with the focus on conformity with and acceptance from typical peers. For example, the caregiver

37 of a 14-year-old male child with Down Syndrome and Autism described her desire for his clothing to reflect socially acceptable style:

“It is not to say it has to be a Target brand or has to be this brand…but whoever does things like [adaptive clothing], they need to be mindful of keeping it cool. It has to be accessible but it still has to be cool.’

Finally, caregiver participants described the importance of clothing options that are readily commercially available and affordable, as stated by this caregiver of a 9-year-old male child with Spina Bifida:

“So that is a quest…it’s a frustrating quest.”

Information Needs About Dressing Challenges and Clothing. Following the discussion regarding clothing-related challenges, participants were asked if a dressing and adaptive clothing online resource would be beneficial, and if so, what type of web content would be most useful. All of the participants agreed that an online resource would be beneficial. The mostly commonly endorsed reasons for visiting a website about dressing and adaptive clothing were (1) shopping information for appropriate clothing (100% of caregivers reporting), (2) instructions for creating adapting clothing (30% of caregivers reporting), and (3) suggestions for dressing assistance (20% of caregivers reporting). When asked to provide open-ended feedback, it was suggested that content be organized not by the user’s specific diagnosis, but by more general terms related to dressing, such as “cognitive challenges” and “physical impairment.” The caregivers stated that this method of organization would be less stigmatizing. Another request was for a community-based resource, such as a chat function or forum space, for individuals with disabilities and/or caregivers to share information.

38 Phase 2: Content and Web Development Content development was informed by information requests from participants, and the integrative review process that incorporated online academic databases (PsychInfo, and WorldCat), internet search engines, and social media and sharing outlets (Google, YouTube, Instagram, and Pinterest). The problem was defined as identifying resources for dressing/undressing challenges as well as clothing designed for individuals with special needs. Topics for the literature search included terms such as, “dressing aids,” “design for disability,” “adaptive clothing design,” and “sensory-friendly clothing.” (Table 5). Criteria for inclusion were (1) that the content was beneficial for users with motor, sensory, communication, and/or cognitive impairment across a wide age span, (2) that the content addressed one or more defined FEA2 clothing related needs of users (Hall & Lobo, 2017), and (3) that the content was preferably from a peer- reviewed source, followed by design/industry and then popular sources. Final sources were compiled and analyzed for inclusion based on these inclusion criteria as well as the goal of eliminating redundancy.

Table 5 Results from the content search

Number of Items Numbe Meeting Number of Database/ r of the Keywords Items Filters Resource Filtered Criteria Found Items for Inclusio n No filter adaptive+design PsycINFO 109 109 0 applied No filter adaptive+design+clothing WorldCat 13 13 0 applied

39 Peer- reviewe inclusive design+clothing WorldCat 70 11 4 d articles Peer- reviewe disability+clothing WorldCat 6,346 493 6 d articles No filter design+for+disability WorldCat 54 54 2 applied Peer- reviewe functional design+clothing WorldCat 252 72 9 d articles Peer- reviewe functional design+disability WorldCat 339 78 2 d articles Peer- reviewe user centered+clothing WorldCat 463 68 4 d articles

3-page Google/Instagra 202000 result 53 44 Adaptive+clothing+diy m #adaptiveclothing limit

Adaptive+fashion 3 result Google/Instagra 222,500,00 #adaptivefashion page 39 33 m 0 limit Wheelchair+fashion 3 result Google/Instagra #wheelchairfashion 19,900,000 page 51 15 m limit Wheelchair+clothing 3 result Google/ #wheelchairclothing 14,000,000 page 75 37 Instagram limit Stroke+adaptive+clothing 3 result Google/ #strokeclothing 81,400 page 51 24 Instagram limit

40 sensory+sensitivity+clothin 3 result Google/ g 10,700 page 48 46 Instagram #sensorysensitivityclothing limit Handicapped+clothing 3 result Google/ #handicapclothing 10,600,000 page 78 38 Instagram limit Dressing+Tools 3 result Google/ 78,600,000 page 57 14 Instagram limit Dressing+Aids 3 result Google/ 195,000 page 45 20 Instagram limit

Academic resources were found to be limited in application to the participants’ requests. The articles included dressing studies or case studies for functional design research projects (Banerjee et al., 1995; Hughes et al., 1993; Inglesfield & Crisp, 1985; Kabel, Dimka, & McBee-Black, 2017; Keates & Clarkson, 2003). Popular literature results more often met the inclusion criteria and were more relevant to our problem definition and participant input on desired content. The content for inclusion were organized according to participant content requests and website navigation suggestions (Figure 4). First, we created an “About Us” page to provide general background information about the project and team. Suggestions for dressing assistance was featured on a webpage entitled “Dressing Help” and is organized according to clothing type: shirts, pants, shoes, etc. (Figure 5). This page incorporates a variety of dressing aids that can assist independent dressing (Cole, 1992). Dressing aids are tools that can be used to put on or take off clothing. For instance, dressing sticks, which feature a hook on one end for grabbing clothing, can help someone with limited range of motion (Selcher, 1991). Another example is a sock puller, which has a terrycloth-covered funnel with long straps. The individual can put the sock on the funnel and guide the sock on using the straps. (Selcher, 1991).

41 An interactive map was added to the website on the “Tailors and Design Services” page to help users locate tailors and design services for clothing adaptation assistance. Shopping information for adaptive clothing for individuals with special needs was consolidated on a webpage entitled “Shop” and was organized by the following general terms related to dressing, based on suggestions from the advisory group: (1) physical impairment, (2) cognitive challenge, (3) sensory sensitivity, (4) vision impairment, and (5) clothing fit issues (Figure 3). Clothing for individuals with disabilities has traditionally had limited choice of style, fit, and cost in the retail sector (K. E. Carroll & Kincade, 2007; Scherer, Jutai, Fuhrer, Demers, & Deruyter, 2007; Schraner, de Jonge, Layton, Bringolf, & Molenda, 2008). Recently, there has been a shift towards increased availability of adaptive clothing on the market, especially via online retailers (Kratofil, 2016; Pittman, 2017). However, adaptive clothing design is primarily focused on functional needs of the end user, with limited design consideration of the other aforementioned user clothing design needs (K. Carroll & Gross, 2010; Hall & Lobo, 2017). There is commonly the assumption that this special population of end users are not interested in the aesthetics or psychosocial aspects of clothing (Gwilt, 2015). For this reason, we aimed to include a broad range of aesthetic adaptive clothing options currently available in the market. Instructions for adapting clothing on one’s own can be found on the webpage “How to Guide” and is organized according to common adaptation needs, such as changing fasteners and fit (Figure 5). Adaptive clothing is created by modifying commercially available clothing designed for the general consumer market to suit the needs of consumers with disabilities (Kabel, McBee-Black, & Dimka, 2016). These modifications vary by user population but can include replacing fasteners, altering clothing fit, and providing ease of access to medical equipment interfacing with the body

42 (Kabel et al., 2016). In addition, a forum was added to the website as a community resource for caregivers and individuals with disabilities to share information.

Figure 4 Homepage of FashionAbled.org

Figure 5 Shop, Dressing Help, and How To Guide webpage screenshots from FashionAbled.org

Phase 3: User Testing and Feedback Followed by Dissemination of the Website Overall, feedback on the beta version of the online clothing resource, FashionAbled.org, was positive in terms of content, readability, layout, and aesthetic quality of the site. All caregivers in the advisory group (100% reporting) rated

44 the content as easy to understand and informative, with particularly positive feedback about content organization. For example, one caregiver reported:

“I love the link: Shop...it was very informative! And I like how you have it separated out based on physical, cognitive and vision. The how-to guide has great descriptions.”

Another caregiver commented:

“I think the links to accessible clothing is awesome. I just clicked physical disabilities section. Any way to incorporate adaptive shoes for kids if you found any?”

A third caregiver stated:

“I think the website is great and very easy to navigate. My favorite parts are the interactive map of where tailoring services are available and the YouTube videos on dressing help.”

The main areas for improvement based on advisory group feedback related to expanding the map location service listing to beyond the Mid-Atlantic US area and to add shoe retailers to the “Shop” webpage. Prior to dissemination, we added nationally-based shoe retailers and extended locations for service listings. All of the participants indicated the potential positive impact for this online resource and reported that they would disseminate the website to friends, family, and relevant community stakeholders.

Website Analytics FashionAbled.org was officially launched on June 21, 2018 and the link disseminated via participant word-of-mouth. In two months immediately post launch, the website received a total of 123 unique visitors, with 465 views. Excluding the homepage, the most frequently visited webpages were, in descending order: Dressing Help, Shop, and How To Guide. A full evaluation of engagement with the website is planned to

45 determine who is visiting the website, the usefulness of the various webpages among visitors, and to better understand how people respond to the content provided on site. These data will be used to better tailor, target, augment, and market the information and resources on FashionAbled.org.

Conclusion The development of FashionAbled.org involved in-depth consultation from members of the community, in the form of our advisory group of end users, and highlighted current commercial resources pertaining to adaptive clothing and dressing assistance. Ultimately, the goal of this project was to provide the community of individuals with disabilities and their caregivers with a central access point for practical, accessible, and up-to-date information about dressing-related needs. Based on advisory group feedback, the website included pages the following pages: (presented in order of visitation frequency) Dressing Help, Shop, How To Guide, Tailor and Design Services, and Forum. Important next steps are to monitor engagement and use of the website, to feature the most recent resources to ensure the accuracy of information, and to remain responsive to emerging clothing-related needs for this community.

Limitations and Future Directions

The findings presented in this paper should be considered in light of some limitations. First, the sample recruited for the initial end user consultation as our advisory group was limited to ten families. Although the individuals with disabilities in this group were heterogeneous regarding the type of disability, the group was nevertheless small. Moreover, the individuals with disabilities were all children and adolescents. Therefore, the needs represented by the advisory group may be primarily focused on needs expressed by children and parents. Nonetheless, there is opportunity for future

46 development work for the website to involve further consultation with adults with disabilities and their caregivers. Similarly, user testing of the completed website was conducted among the same small sample. Fortunately, the website contains opportunities for users to submit questions and provide feedback, ensuring the continuing involvement of additional community members as the site is maintained into the future. In order to keep FashionAbled.org current, it will be critical that the website be consistently maintained. We will continue to monitor both the landscape of adaptive clothing commercially available and the body of academic knowledge. As we continue to disseminate the website, we will monitor community response and recommendations or additional website features. In addition, future studies will involve further exploration of adaptive clothing design features and broaden information on the website in order to aim to create a design community platform. For example, in future studies we plan to identify reoccurring design themes across commercially available adaptive clothing to determine key variables for users with a broad range of abilities. Moreover, we will explore and help disseminate the work of other researchers, users, and stakeholders working on adaptive clothing and independent dressing solutions.

47 Chapter 4

FUN & FUNCTION: PARTICIPATORY APPAREL DESIGN FOR CHILDREN WITH MOTOR AND/OR SENSORY IMPAIRMENTS

Abstract

Background Dressing and undressing is a basic Activity of Daily Living (ADLs), and one that may require dependence on others for children with disabilities. This lack of independence can have significant impact on the child’s quality of life (QOL) and potentially caregiver burden. Aim This study objective was to design inclusive apparel that aimed to increase independence with the dressing task while appealing to broad user needs. Methods Ten families of children with disabilities participated in the study. We used a mixed method approach combining qualitative analysis of interview data, iterative prototyping with participants, and usability testing comparing our inclusive designs with commercially available standard clothing (analyzed with behavioral coding software). Findings We identified typical dressing behaviors for this population based on the child’s own clothing. We developed two categories of novel inclusive designs for usability testing, based on a novel framework. We found that the dressing task took longer with commercial jeans then with the child’s own pants. Testing with our two types of inclusive jeans compared to commercial jeans, one design was successful in promoting user independence and one was not. Conclusion Based on these findings, we outline the importance of task analysis with self-selected and standard clothing as well as key design considerations, especially the role of fit, fabric, and fasteners.

Keywords Activities of Daily Living, Inclusive Clothing, Apparel Design, Disability,

48 Introduction. Typical self-care activities, or activities of daily living (ADLs), can be difficult for individuals with disabilities (James et al., 2013). The result is often that individuals with disabilities require assistance from caregivers to complete self-care tasks. This reliance on others may negatively affect the individual’s quality of life (QOL) (Milnac, 2016). Identifying the specific ADL challenges and QOL issues for individuals with disabilities and assessing apparel product needs related to a given ADL challenge can facilitate the development of impactful, “real-world” design solutions for this and other populations generally underserved by the fashion industry (Chang, Hodges, & Yurchisin, 2014). The objective of this study was to design inclusive apparel that aimed to increase independence with ADLs while being aesthetically appealing to clients. We aimed to design an apparel solution that addressed challenges and needs previously reported by children with disabilities and their caregivers related to the task of dressing (Hall & Lobo, in prep). We explored apparel patternmaking and construction techniques to create design solutions to serve the sample population according to reported and assessed user functional characteristics. We iterated and tested with users/stakeholders to measure how successful the design solutions were at addressing user/stakeholder-cited goals for enhancing ADL performance and apparel product needs. Empirical testing and user feedback were used to assess the feasibility of the apparel design solutions.

This study also tested the feasibility of implementing our novel needs assessment model for users with disabilities to guide the development and testing of apparel that aimed to meet users’ self-identified functional, expressive, aesthetic, and accessibility (FEA2) needs (Hall & Lobo, 2017). Using a design process that incorporates user- centered approaches and inclusive participatory design methodologies can potentially result in design solutions that address significant needs related to a given ADL self-care

49 task and may positively impact QOL. QOL has been defined by the World Health Organization as “the individual's perception of their position in life, in the context of culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (World Health Organization 1993). QOL has been shown to be impacted by the individual’s daily functional ability and participation (Narayanan et al., 2007). QOL is an important consideration for designers working with children with disabilities. According to families of children with disabilities, in order to have a high QOL, “children need to have the ability to carry out daily living tasks including dressing, feeding and toileting and being independent” (Waters et al., 2005). Since QOL is related to level of independence in ADLs (Fayers, 1997), products designed to address and enhance self-care ADLs may positively impact QOL for children with disabilities. Providing opportunities to increase independence for self-care in children with disabilities can also potentially reduce caregiver strain in the form of level and type of assistance required during self-care ADL tasks (Crowe & Florez, 2006; Butler, 2009). Children with disabilities, including those with motor and/or sensory impairment like the participants in this study, often have fewer opportunities to engage with peers and their environment (Campbell, 2012). Butler (2009) stated that “the inability to influence their environment (i.e., to affect or alter it through their own actions) can lead to a condition called ‘learned helplessness’ in which children give up trying to control their own world”. Without the opportunity to explore and learn necessary skills, children with disabilities are at risk for passivity and increased dependence on others for self-care and self- maintenance tasks (Butler, 2009). Parents of children with disabilities often express concerns related to their child's future educational and work prospects, community acceptance, and requirements for physical care, as well as social engagement, peer relationships, and ultimately level of independence (Hallum, 1995). Caregiving for a

50 child with a disability requires a significant amount of time (an average of 20.8 hours per week related to the child’s self-care), energy, and resources (Crowe & Florez, 2006). Increased stress and lack of additional support put caregivers at risk for strain and clinical depression (Singer, 2006). Creating products that increase children’s independence with ADLs may potentially minimize caregiver strain. In summary, children with disabilities have significant challenges with ADLs, such as independent dressing (Hall & Lobo, in prep; James et al., 2013). Current efforts to identify child and family design-related needs for products to address these challenges have been limited in either focus and/or approach (Porter et al., 2004; Clarkson, 2007). This study aimed to create an apparel design solution to increase dressing independence by targeting user-identified challenges and needs. We focused on designing jeans because users identified this type of apparel as something they wanted to wear but had challenges using (Hall & Lobo, in prep). Addressing needs related to a self-care ADL task provides the potential to positively impact the child’s QOL while also potentially reducing caregiver strain in the form of enhancing the child’s independence. This study provides important information for design disciplines by describing the typical dressing behaviors of a heterogeneous group of children with disabilities. The apparel design solutions presented in this study are significant in that they aim to impact the broader community of individuals with disabilities by targeting challenges and needs likely to apply across a variety of populations of individuals with disabilities. Finally, the apparel design solution represents a product from our novel approach to apparel design that extends the FEA model (Lamb & Kallal, 1992) to include accessibility needs (FEA2; Hall & Lobo, 2017).

51 Methods

Research Design.

This study was an exploratory study using mixed methods research. We used an Evidence-based Design approach (Martin et al., 2012), combining phenomenological qualitative and quantitative analysis of textual narrative data, iterative prototyping, and usability testing in order to identify a design solution to meet user needs. Participants. Ten children with self-identified motor and/or sensory impairment aged 6 -14 years old and their primary caregivers participated in this study (Table 6). For usability testing, 10± 2 participants are the recommended standard (Creswell, 1998; Schmettow, 2012). Participants were recruited from the local community through flyers/advertisements and professional physical therapy contacts. Parental consent and child assent were obtained prior to participation and research was conducted in accordance with the University of Delaware’s Internal Review Board.

Table 6 Demographic Characteristics of the Participants (F= female, M = male)

Age (years) Gender Diagnosis Caregiver Relationship 6 F Down Syndrome Biological Mother 7 F Down Syndrome Biological Mother 7 F Cerebral Palsy Biological Mother 7 M Arthrogryposis Biological Mother Biological Mother 9 M Cerebral Palsy 9 M Spina Bifida Biological Mother 9 M Cerebral Palsy Biological Mother 14 M Down Syndrome & Autism Biological Mother 14 F Cerebral Palsy Biological Mother 14 F Cerebral Palsy Biological Father

52 Overview of Methods. This study involved five or six data collections per participant over a period of 3-4 months. This study involved Baseline Data Collection (1-2 visits), followed by a Design Phase to produce apparel prototypes (2-3 visits), and then by Usability Testing of the final design apparel product (3 visits). These phases are described in detail below. Data collections were held either at the participant’s home or at the research facility at University of Delaware. The study team consisted of a PhD student with expertise in Fashion & Apparel Studies and two experts in rehabilitation and developmental science. All baseline assessments were conducted by one of the rehabilitation experts who is a trained physical therapist. Baseline Data Collection. Caregivers of study participants first completed a demographic and general health form during the baseline visit to document the family’s demographics and the child’s general state of health. All children were assessed by a trained physical therapist to characterize their 1) body function and structure [range of motion (ROM), muscle strength, and muscle tone]; and 2) activity and level of participation (QOL and balance) to capture information across domains of the International Classification of Functioning, Disability and Health [ICF, (Rosenbaum et al. 2004)]. These data were used to assess the functional level of children relative to the dressing task and to identify design metrics and constraints for the garment prototypes.

To perform the clinical measurement of ROM, a mechanical goniometer was used and accepted values were considered as described by Reese and Bandy (2010). for shoulder flexion, shoulder abduction, elbow flexion, wrist flexion, hip flexion, hip abduction, knee flexion, and ankle flexion. Muscle tone was measured by the Modified Ashworth Scale. This scale measures resistance during passive soft-tissue stretching and is used as a simple measure of muscle spasticity, ranging from 0 (“no increase in muscle

53 tone”) to 4 (“affected parts are rigid in flexion/extension;” Bohannon & Smith, 1987). Muscle strength measurements were performed manually according to the Daniels and Worthingham Manual Muscle Test protocol (Hislop et al., 2014). This assessment is graded on a six-point scale, including: 0 – no muscle contraction; 1 – flicker of contraction on palpation or moves through the partial range of motion without gravity; 2 actively moves through full range of motion without gravity; 3 – actively moves through full range of motion against gravity; 4 – actively moves through full range of motion with some manual resistance; and 5 – actively moves through full range of motion with high resistance. For muscle tone and muscle strength, the movements tested (i.e., flexion, extension, adduction, and abduction) were grouped and averaged by their corresponding joints: shoulder, elbow, wrist, hip, knee and ankle (Appendix D). Quality of life was assessed using the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD). This is a questionnaire designed to measure caregivers’ perspectives about health, comfort and well-being of the child; and about caring for the needs of children with disabilities aged 5 to 18 years (Narayanan et al., 2007a, b). This questionnaire was used to ensure all the children included in the study had identified challenges with dressing/undressing, as well as to measure general ADL task performance. CPCHILD consists of 36 items distributed over six sections representing: 1) Personal care, which includes the dressing task; 2) Positioning, transfer, and mobility; 3) Communication and social interaction; 4) Comfort, emotions, and behavior; 5) Health; and 6) Overall quality of life. For sections 1-3 that involve the performance of skills, the degree of difficulty of activity was rated on a 7-point ordinal scale (0: “impossible” to 6: “no problem at all”). Also, the level of assistance required to accomplish each activity was rated on a 6-point ordinal scale from 0 (“total assistance”) to 5 (“independent”) 3. For section 4, the frequency of discomfort was rated on a 6- point

54 ordinal scale from 0 (‘none of the time’) to 5 (‘all the time’) and an additional 3-point ‘Intensity’ scale quantified the magnitude of the discomfort or behavioral problem. Items in sections 5-6 were rated on a 6-point ordinal scale from 0 (“very poor”) to 5 (“excellent). The total raw score was summarized for each section (Narayanan et al., 2007a, b). Finally, balance was measured by the Pediatric Balance Scale (PBS), a modification version of Berg’s Balance Scale (Franjoine et al. 2013). This scale was developed as a balance measure for school-age children with mild to moderate motor impairments. The PBS consists of 14 items, and each item is scored using a scale from 0 (“needs moderate or maximal assistance to stand”) to 4 (“able to stand without using hands and stabilize independently”). Standard scoring process involves multiple trials allowed on many of the items with the score reflecting the child’s best performance (Franjoine et al. 2013). The total raw score was summarized from all activities. For QOL and balance outcomes, the percentage of the total possible raw score for each child was calculated [Performed raw score *100/ Total possible raw score] and averaged by sample group. Children’s fine motor ability was evaluated using a dressing board: a tool used to evaluate fine motor performance with a variety of typical clothing fasteners. Dressing boards are commonly used in occupational therapy to teach fastening skills required for dressing. Observational videos were collected of the children opening and closing various types of fasteners, including those typically found in commercially available denim jeans (Figure 6), in order to determine which fasteners were challenging for the children to manipulate and successfully fasten/unfasten independently within 5 minutes per fastener. The board also included fasteners we hypothesized might be easier for children to utilize with the garment prototypes, including magnetic fasteners of varying strengths.

55 Figure 6 Dressing board for assessing fine motor ability to complete a variety of clothing fasteners

Observational video was also collected of participants completing the dressing/undressing task with both the child's self-selected typical pants (elastic waist jersey knit sweatpants/leggings, with varied fiber content) and a commercially available standard version (GAP original fit jeans, made from 100% cotton woven denim) for the identification of challenges related to the dressing task. These observational videos were used to further identify the functional level of the children during the dressing task and to aid in identifying the design metrics and constraints for the garment prototypes. Further, these videos were visually reviewed and discussed for the purpose of creating a

56 standardized behavioral coding protocol using coding software [Datavyu Team (2014); Appendix B]. This video review process aimed to provide information related to participants’ functional abilities and limitations, to define the steps required to complete the dressing task, and to assess individual task performance with the apparel industry standardized garments. Participants put on and then took off each garment at his/her typical pace, while being video recorded using one video recorder showing a frontal view of the full child. Children wore tight fitting clothing or bathing suits that fit under the testing garments for discretion. Caregivers were present and were instructed to provide assistance to the child as needed, based on their typical dressing routine and/or to provide assistance as they deemed appropriate when prompted by the child during the testing session. In preparation for Usability Testing, four coders were trained to become reliable with coding the video data with the resultant protocol until they reached 85% intra- and 85% inter-rater agreement. The outcome variables identified for behavioral coding are described in detail below. Design Phase. The apparel design process for this study followed the Stanford University D. School user-centered approach (Libby, 2017): (1) empathy, (2) define, (3) ideate, (4) prototype, (5) test, and (6) sharing. The empathy phase was based on interview data collected in the naturalistic social context within which we would be designing (i.e., participation in home, school, and community environments; Chapters 2- 3). We defined the problem according to the ADL challenge of independent dressing, as observed and validated by the Baseline Data Collection. The ideate phase included design research for garment prototypes based on participant functional characteristics based on the physical therapy assessments and observed in the Baseline Data Collection videos and aesthetic preferences reported by the users during interviews (Chapter 2) and in follow-up design meetings. For prototyping, we designed, patterned, and constructed

57 garments that aimed to allow participants to more independently dress and undress, to be aesthetically pleasing to the participant, to be expressive of the participants’ psychosocial needs, and to be accessible to stakeholders. Sample garments, known as toiles, were used in order to appropriately fit and size the final prototypes prior to testing. Preliminary testing of prototypes was conducted iteratively to determine functional usability and feedback on all design considerations with the study participants. Our ultimate goal was to determine how an universally designed prototype that aimed to address the range of variation in the participants’ functional ability would perform across participants and how customized solutions based on observed variations in the participants’ functional ability would perform. These two design solutions were then compared to the child’s self-selected pants worn on a typical day and a commercially available pair of jeans worn by the child’s typical peer group(GAP brand) during Usability Testing. Usability Testing. Once the prototypes were constructed and approved by participants, Usability Testing was conducted over three visits separated by 1 week each. Each Usability Testing visit involved testing with all four garment conditions: 1) the child’s Self-Selected Pants were tested to observe typical dressing performance for said child within the given product category; 2) the Commercial Jeans served as a comparison between the child’s typical dressing performance and performance using industry standardized clothing worn by their typical peer group; 3) the Universal Design Jeans, which were designed to address the range of functional abilities of all participants but featured the personalized aesthetic of each child; and 4) the Custom Design Jeans, which were designed to meet specific variations in the participants functional abilities, and with the same personalized aesthetic used for the Universal Design Jeans.

58 At each visit, participants donned and doffed each garment while being video recorded using one video recorder showing a frontal view of the full child. Children wore tight fitting clothing or bathing suits that fit under the testing garments for discretion. To control for order effects, the order of garment testing (1,2,3,4) was alternated in a predetermined manner over the course of the three visits within each participant, as well as across participants, with the requirement that no garment be presented in the same testing order across any of the 3 visits for each participant or between the first visits of subsequent participants. Children were provided as much time as necessary for the dressing task. Caregivers were present and were informed they may provide typical dressing task assistance or may assist if requested by the child. Task assistance from the caregiver included verbal or manual assistance. Performance during the dressing task was assessed from videos via behavioral coding using Datavyu software (Appendix E). We measured: 1-2) Time to complete the task for both dressing (1) and undressing (2); 3) Caregiver Assistance type (verbal or manual) and level (High = Total, Medium = Moderate, Low = Minimal, or none = Independent based on the CPCHILD scaling rubric; Narayanan et al., 2007); 4) End State of the garment at task completion (i.e. Was the garment facing the proper direction? Was the garment twisted?); and 5) the child’s affect during the task (Positive, Neutral, or Negative and coded in continuous time during each child’s testing session). Time to complete the task for dressing and undressing is reported in total task time (minutes). Type and level of caregiver assistance, as well as the child’s affect during the task, are reported in percentage of overall task time. Children kept the Universal Design Jeans and the Custom Design Jeans at home after Visit 1 to determine if there were any learning effects with the jeans and to document whether users selected to wear the jeans in their daily life following Visit 1.

59 Caregivers were asked to log the number of times and duration the child wore the Universal and Custom Jeans between the first and third visits. They were also asked to provide comments/feedback at the end of Visit 3 (Appendix F). Results for frequency and duration of wear from the wearing log are reported using descriptive analyses; caregiver comments were manually coded by the principal investigator and emerging themes are reported. Results for the dressing outcome variables were analyzed using the non- parametric Wilcoxon signed-rank test with an alpha level of .05 to assess: 1) performance with the Self-selected Pants relative to the Commercial Jeans to determine whether children were better able to dress using their self-selected pants and to determine the relative level of difficulty of using commercial jeans; and 2) performance with the Universal and Custom Designs relative to the Commercial Jeans to determine whether the children were better able to dress using the garment prototypes. Results of the Wilcoxon signed rank test are presented with test statistic (T), p value (p) and effect size (r), with a 0.2 effect size considered “small,” 0.5 considered “medium,” and 0.8 considered “large” (Field, 2013). Data was analyzed both across participants and by participant groups. Participant groupings were based on participant functional ability from the Baseline Data Collection. Visual inspection was used first to determine whether there were any meaningful trends in performance across time. If no trends were observed, we intended to combine data across sessions for analyses.

Results

Baseline Data Collection.

The baseline data suggested that the participants could be categorized into one of three groups: a high (HF; 4 participants), medium (MF; 4 participants), or low

60 functioning (LF; 2 participants) group based on how participants performed during the dressing task. Children with HF were able to bear weight on their legs (with or without support), balance, and could perform the dressing task while standing. Children with MF were either not able to bear weight on their legs or not able to balance while standing, and could perform the dressing task while sitting. Children with LF were either not able to bear weight on their legs, not able to balance while sitting, or did not have the strength to perform the task independently and therefore could perform the task with assistance while laying down. Findings from the Baseline Data Collection are reported for these three groups in Table 7 with findings for the Dressing Board, which aided garment prototype fastener selection, reported across all study participants in Table 8. For the Body Function and Structures level of the ICF, all groups presented with limited ROM of their upper limbs but no upper limb impairments in muscle tone or muscle strength. In contrast, for the lower limbs, the MF and LF groups presented with limitations in ROM, muscle tone, and muscle strength. For the Activity and Participation level of the ICF, only the LF group presented with activity limitations related to balance on the PBS. All caregivers reported dressing activity limitations with some level of assistance required for the task on the CPCHILD questionnaire, however the three groups reported similar quality of life ratings on the CPCHILD. Of the 9 types of typical commercial fasteners tested with the children using the Dressing Board, only the magnetic fasteners were successfully independently fastened and unfastened by all 10 children in the study (see Table 8).

Table 7 Participants’ characteristics (Mean ± SD) of body function and structure, and activity and level of participation domains.

Body Function and Structures

61 High Medium Functioning Functioning Low Functioning Range of Motion Shoulder flexion 167.5 ± 25.0* 175.0 ± 10.0* 173.3 ± 11.5* Upper limbs Shoulder abduction 157.5 ± 45.0* 157.5 ± 45.0* 153.3 ± 46.2* Elbow flexion 133.7 ± 22.5* 145.0 ± 0.0 145.0 ± 0.0 Wrist flexion 75.0 ± 30.0* 87.5 ± 5.0 86.6 ± 5.7

Hip flexion 125.0 ± 0.0 115.0 ± 12.2* 115.0 ± 8.6* Lower limbs Hip abduction 45.0 ± 0.0 36.2 ± 17.5* 45.0 ± 0.0 Knee flexion 140.0 ± 0.0 122.5 ± 28.7* 133.3 ± 5.7 Ankle flexion 16.2 ± 7.5 8.7 ± 7.5* 10.0 ± 8.6* Muscle Tone Shoulder 0 ± 0 0 ± 0 0 ± 0 Upper limbs Elbow 0 ± 0 0 ± 0 0 ± 0 Wrist 0 ± 0 0 ± 0 0 ± 0

Lower limbs Hip 0 ± 0 0.2 ± 0.5 0.5 ± 0.7 Knee 0 ± 0 0.2 ± 0.5 0.5 ± 0.7 Ankle 0.2 ± 0.5 1.0 ±1.4* 2.0 ± 1.4 Muscle Strength Shoulder 4.1 ± 1.4 4.3 ± 0.5 3.2 ± 0.3 Upper limbs Elbow 4.1 ± 1.4 4.3 ± 0.5 3.3 ± 0.6 Wrist 4.0 ± 1.4 4.5 ± 0.6 3.3 ± 0.6

Hip 4.0 ± 0.8 3.7 ± 1.2 2.2 ± 0.2* Lower limbs Knee 4.0 ± 0.8 3.2 ± 1.7 2.7 ± 0.6* Ankle 3.4 ± 1.1 2.1 ± 1.6* 1.8 ± 0.5* Activities and Participation HF MF LF Pediatric Balance Scale 89.7 ± 8.2 52.6 ± 46.4 13.1 ± 6.2* CPCHILD 65.7 ± 7.4 62.2 ± 10.7 66.3 ± 5.5 CPCHILD: Caregiver Priorities & Child Health Index of Life with Disabilities * Values considered “limited/ impaired”

62 Table 8 Dressing Board Results

Fastener Type Number of Participants Number of Participants Able to Complete Unable to Complete Independently Independently Hook & Loop Tape 5 5 Snaps 2 8 Hook & Eyes 0 10 Zipper 3 7 Magnet 10 0 (pull force – 1.93 lbs.) Magnet 10 0 (pull force – 4.06 lbs.) Magnet 10 0 (pull force – 5.03 lbs.) Flat Button 5 5 Shank Button 4 6

Design Phase. The ideate phase for the Universal Design and Custom Design prototypes included exploring participant functional characteristics, based on the physical therapy assessments and analysis of video pilot data that identified functioning level during the task. Our design metrics and constraints for the prototypes were determined by these data. We observed the participants’ atypical physiology of the participants, (compared to body types reflected in the commercial apparel industry sizing and shape standards), restricted mobility, limited range of motion, balance challenges, and challenges with clothing fasteners. We needed to create one Universal Design prototype and a selection of Custom Design prototypes that addressed (1) the shape and size of our participants, (2) the constraints of the participants’ mobility, range of motion and balance, (3) and the constraints of the participants’ fine motor skills with clothing fasteners. In order to also meet the participants’ psychosocial clothing needs represented in the FEA2 Model (Hall & Lobo, 2017) we needed to identify and include the participant’s

63 preferred aesthetic preferences. For each participant, we based their prototype aesthetic and expressive needs on specified preferences from in-person interview data (Chapter 2). Since all the participants reported wanting aesthetic styles that matched their typical peers (Chapter 2), we used apparel industry fashion trend reports for each participants’ age group and desired product category (denim jeans; Rechner & Miller, 2017). We defined the resulting design metrics and constraints as the Five F Framework: Fit, Function, Fabric, Fastener, Fashion (Figure 7). By addressing each of the 5 F’s, we aimed to address all of the participants’ clothing-related needs.

Figure 7 The 5 F Framework: Design metrics and constraints for the garment prototypes

Based on our Five F Framework, we could prototype both an Universal Design jean and a selection of Custom Design jeans aimed at addressing each of these areas

64 (Figure 8). For these participants, the Five F’s were (1) Fit: we customized the jeans for each child based on their individual size and shape, (2) Function: we placed the fastener in an easily accessible area based on the range (for the Universal Design) or variations (in the Custom Designs) of participant mobility, range of motion, and balance; furthermore, any design details, such as pockets, were placed accordingly, (3) Fabric: we selected fabric based on the “hand” or feel of the fabric’s texture to address any anticipated issue with sensory sensitivity to fabric and fiber content to ensure the appropriate amount of stretch which would facilitate the dressing task, (4) Fastener: we selected the type of fastener as well as ease of use of said fastener based on fine motor baseline data results, and (5) Fashion: we selected style and garment embellishment based on the participant’s personalized aesthetics and reported need for typical peer group acceptance.

Figure 8 Design solutions addressing metrics and constraints for garment prototypes

65 The final Universal Design that emerged featured (1) Fit: a customized fit for each child based on their individual size and shape, (2) Function: we placed multiple magnetic fasteners along both side seams from the waist to the lower thigh area and from the top of the calf to the ankle in an easily accessible area located in a way that would facilitate independent dressing for users with varied levels of functionality (Figure 9C). Moreover, placing fasteners along the side seams, rather than the front or back, was consistent with traditional adaptive pant designs (Carroll & Kincade, 2007); (3) Fabric: we selected 11 oz. 61% Cotton 31% Modal Rayon 6% Polyester 2% Spandex woven denim fabric based on soft textile texture and amount of stretch from the Spandex, (4) Fastener: we selected the magnetic fastener with the strongest participant tested pull force (5.03 lbs.) to ensure a strong closure that all participants could still independently complete (Figure 9B)and (5) Fashion: we designed custom styles and embellishments based on the participant’s requests (Figure 9A). Two versions of Custom Designs emerged and differed from one other, and the Universal Design, only by one of the “5 Fs:” Function, because we were aiming to address variations in the participants’ functioning level. The Fit, Fabric, Fastener, and Fashion were the same across the both Custom and Universal Designs. However, the two final Custom Designs differed by fastener placement and functional design details. Custom Design I had a magnetic fastener (pull force 5.03 lbs.) placed in the front fly, rather than the side seams. It was observed that some participants seemed to only struggle with the fastener type, not the placement. For this reason, we created a magnetic fly closure rather than the typical zipper used in commercial jeans. We also observed that some participants wore lower limb orthotics and struggled with the narrow leg of the commercial jeans. For this reason, we added a second magnetic closure along the side seams from mid-calf to ankle to accommodate the orthotics while maintaining garment fit

66 (Figure 9E). Custom Design II differed from Custom Design I, in that it was designed with the fastener placed not along the side seams or the front fly, but on each side of the waist with an overlapping front connected by a third magnet (Figure 9D). We decided to give the participants the option between the two Custom Designs and see which was selected by each. Custom Design II was selected by two of the child participants (both assigned to the Medium Functioning Group). The remaining participants selected Custom Design I.

Figure 9 Examples of the Universal and 2 Custom Designs, featuring magnetic fasteners (placement indicated by arrows).

Usability Testing. Visual inspection was used to determine whether there were any meaningful trends in dressing task performance across time. No consistent trends were identified, so data were combined across sessions for analyses. Task performance with the Self- Selected Pants relative to the Commercial Jeans was analyzed to compare the child’s

67 Table 9 Mean performance for task behaviors during the complete task (dressing and undressing) comparing Commercial Jeans with Self-selected Pants, Custom Design Jeans, and Universal Design Jeans for all participants, sorted by group. Means presented as percent of complete task time with standard deviations in parentheses; asterisk indicates statistically significant difference relative to the Commercial Jeans.

68 Verbal Manual Assistance Child Inc. Assistance Affect Orient. Enc. Instr. High Med Low Neg. Neut. Pos. Commercial 0.55 0.00 100.00 0.00 0.00 36.20 17.14 0.00 0.00 Jeans (2.0) (0) (7.2) (5.1) Self- 0.00 0.00 100.00 0.00 0.00 0.00 57.6 0.00 0.00 Selected (0) (8.9) Pants Custom 0.00 0.00 100.00 0.00 0.00 0.00 72.22 3.22 0.00

Design (0) (4.1*) (3.1) Jeans

Universal 0.00 0.00 100.00 0.00 0.00 0.00 49.51 0.00 0.00 Design (0) (3.94) Jeans

Low Functioning Commercial 0.00 0.55 0.00 0.00 0.00 0.00 79.03 9.54 0.00 Jeans (2.4) (3.4) (4.9) Self- 0.00 0.00 0.00 0.00 0.00 0.00 75.00 4.80 0.00 Selected (30.3) (1.4) Pants Custom 0.00 0.00 0.00 0.00 0.00 0.00 39.3 8.95 0.00 Design (4.01*) (3.3) Jeans Universal 0.14* 0.55 0.00 0.00 0.00 0.00 83.80 20.16 0.00 Design (0.12) (0.22) (3.34) (3.3) Jeans Medium Medium Functioning Commercial 0.43 2.44 1.90 0.00 0.00 0.00 56.82 15.19 0.00 Jeans (1.4) (2.8) (0.96) (2.49) (1.44) Self- 0.00 0.00 0.00 0.00 0.00 0.00 33.23 3.77 0.00 Selected (17.6) (1.89)

Pants Custom 1.15 7.76 0.00 0.00 0.00 0.00 20.98 62.18* 0.00 Design (0.95) (0.81*) (2.5) (3.7) Jeans Universal 0.90 4.95 4.92* 4.9 0.00 0.00 40.77 23.81 0.62 Functioning Design (0.95) (0.89) (0.68) (0.90) (2.54) (3.71) Jeans High

typical dressing performance with dressing performance using commercial clothing standardized for the child’s typical peer group (Table 9). With the Self-Selected pants,

69 none of the children in the study required verbal dressing assistance from his/her caregiver. Only children in the LF Group required manual assistance from caregivers, specifically high (or total) task assistance, which is consistent with the observed functional level of this group. None of the children displayed negative affect during the task. Most of the time, the children displayed neutral affect during the task (LF: 57.6±8.9%, MF: 75.0±30.3%, HF: 33.23± 17.6% of the time). Positive affect was displayed a small amount of time and most often by children in the MF Group (LF: 0.0%, MF: 4.80±1.4%, HF: 3.77±1.89%) For all of the children, the garment was correctly oriented at the end of the task. When dressing and undressing using the Commercial Jeans, the children required small amounts of verbal assistance from caregivers, in the form of encouragement (LF: 0.55±2.0%; MF: 0.00%; HF: 0.43±1.4%) and instruction (LF: 0.00%; MF: 0.55±2.4%; HF: 2.44±2.8%). Manual assistance was only required from caregivers at a ceiling level of 100±0% of the time for the LF Group, consistent with their functioning level and 1.90±0.96% of the time for the HF Group (the HF Group at times required total manual assistance from caregivers with the zippered fastener). Negative affect was displayed 36.20±7.2% of the time for the LF Group, but was not displayed by children in the other groups. Most of the time, the children displayed neutral affect during the task (LF: 17.14±5.1%, MF: 79.03±3.4%, HF: 56.82±2.49%). Positive affect was displayed a modest amount of time by the MF and HF Groups (MF: 9.54±4.9%; HF: 15.19±1.44%) and not at all by the Low Functioning Group. For all of the children, the garment was correctly oriented at the end of the task. Across all participants, dressing and undressing using the Commercial Jeans took significantly more time to complete when compared to the Self-Selected Pants (Figures 10-11; Dressing: T=336.00, p=.002, r= 0.39; Undressing: T=90.00, p=.017, r= -0.31).

70 Dressing with the Commercial Jeans required more time within the LF Group compared to dressing with the Self-Selected Pants (Figure 12; T=0.00, p=0.028, r=0.64). There was no difference in undressing time with the Commercial and Self-selected Pants for the LF Group. There was no difference in dressing time with the Commercial and Self-selected Pants for the MF Group, but undressing required more time with the Commercial Jeans for this group (Figure 12-13; Dressing: T=29.00, p=0.722, r=0.07; Undressing: T=72.00, p=0.010, r=0.53). Dressing with Commercial Jeans took longer for the HF Group but there was no difference in undressing time (Dressing: T=0.00, p=0.003, r=0.60; Undressing: T=36.00, p=0.814, r=0.04). For task behaviors during testing of the Commercial Jeans compared to the Self- Selected Pants, there were no significant differences for any of the children with verbal assistance from caregivers in the form of encouragement (LF: T=0.00, p= 0.180, r=0.42; MF:T=6.00, p= 0.715,, r=0.07 HF: T=9.00, p=0.753), r=0.06 or instruction ( LF:T=1.00, p=0.317, r=0.31; MF: T=5.00, p=0.249, r=0.24: HF:T=14.00, p=0.575, r=0.11). Manual assistance was only required a significant amount of task time from the caregiver at a high (or total) level for children with HF with the Commercial Jeans compared to the Self-Selected Pants, as noted due to the zippered fastener (LF: T=1.00, p=0.317, r=0.31; MF: T=2.00, p=0.138, r=0.31; HF: T=0.00, p=0.028, r=0.45). Medium and low levels of manual assistance were not required in significantly different amounts of task time between the Commercial Jeans and Self-Selected Pants for each group (Medium – LF:T=0.00, p=1.00, r=0; MF: T=2.00, p=0.655,r=o.09; HF:T=10.00, p=0.68, r=0.37; Low – LF:T=0.00, p=1.00,r=0, MF:T=0.00, p=1.00, r=0; HF: T=0.00, p=0.317, r=0.20) There was no significant difference in child affect between these two types of pants (Negative - LF: T=1.00, p=0.080, r=0.55; MF: T=8.00, p=0.273, r=0.23;HF:T=0.00, p=0.068,r=0.37; Neutral - LF: T=13.00, p=0.138, r=0.47; MF: T=27.00, p=0.959, r=0.01;

71 HF: T=11.00, p=0.173, r=0.28; Positive- LF: T=3.00, p=0.180, r=0.42; MF: T=12.00, p=0.214, r=0.27;HF: T=18.00, p=0.594, r=0.01). For all of the children, there were no differences in time the garment was incorrectly oriented between the Commercial Jeans and the Self-Selected Pants.

Figure 10 Dressing times for the Commercial Jeans and Self-selected Pants for the entire study sample; asterisk indicates statistically significant difference.

Figure 11 Undressing times for the Commercial Jeans Self-selected Pants for the entire study sample; asterisk indicates statistically significant difference

Figure 12 Dressing times for the Commercial Jeans and Self-selected Pants for each group; asterisk indicates statistically significant difference

Figure 13 Undressing times for the Commercial Jeans and Self-selected Pants for each group; asterisk indicates statistically significant difference.

When dressing and undressing using the Universal Design Jeans, the children with MF and HF required small amounts of verbal assistance from caregivers, in the form of encouragement (LF: 0.55±2.0%; MF: 0.14%; HF: 0.43±1.4%) and instruction (LF:

0.00%; MF: 0.55±0.22%; HF: 4.95±0.89%). Manual assistance was required from caregivers at a ceiling level of 100±0% of the time for the LF Group and 4.92±0.68% of the time for the HF Group and medium level of assistance with the MF group (4.94±0.90%; the MF and HF Group at times required manual assistance with the Universal Design’s side seam fasteners). Negative affect was displayed 0% of the time for every group. Most of the time, the children displayed neutral affect during the task

75 (LF: 49.51±3.94%, MF: 83.80±3.4%, HF: 40.77±2.54%). Positive affect was displayed part of the time by the MF and HF Groups (MF: 20.16±3.3%; HF: 23.81±3.71%) and not at all by the Low Functioning Group. For all of the children, the garment was correctly oriented at the end of the task (See Table 8). Results of the time to complete the task (dressing and undressing) for the Universal Design Jeans compared to the Commercial Jeans are presented for the entire study sample (Figure 14-15) and sorted by group (Figure 16-17). For all participants, the dressing portion of the task using the Universal Design Jeans took more time to complete when compared to the Commercial Jeans (Figure 14; T=317.00, p=.031, r= 0.28). For the entire group, the undressing task took less time to complete with the Universal Design Jeans compared to the Commercial Jeans (T=121.00, p=0.037, r=0.27). Results of the time to complete the dressing task according to each group, the children with MF took longer to dress in the Universal Design Jeans compared to the Commercial Jeans (Figure 16; LF: T=9.00, p=0.753, r=0.09; MF: T=58.00, p=0.026, r= 0.45; HF: T=50.00, p=0.388, r=0.17). Children with MF and HF took longer to undress in the Commercial Jeans than in the Universal Design Jeans (LF: T=8.00, p=0.600, r=0.15; MF: T=11.00, p=0.028, r= 0.45; HF: T=1.00, p=0.23, r=0.61).

Figure 14 Dressing times for the Commercial Jeans, Custom Design Jeans, and Universal Design Jeans for the entire study sample; asterisk indicates statistically significant difference.

Figure 15 Undressing times for the Commercial Jeans, Custom Design Jeans, and Universal Design Jeans for the entire study sample; asterisk indicates statistically significant difference.

Figure 16 Dressing times for the Commercial Jeans, Custom Design Jeans and Universal Design Jeans for each group; asterisk indicates statistically significant difference.

Figure 17 Undressing times for the Commercial Jeans, Custom Design Jeans and Universal Design Jeans for each group; asterisk indicates statistically significant difference.

For task behaviors during testing of the Universal Design Jeans, only children with MF required significantly more verbal assistance from caregivers in the form of encouragement with the Universal Design Jeans compared to the Commercial Jeans (LF:

T=3.00, p= 1.00, r=0; MF: T=15.00, p= 0.043, r=0.41, HF: T=30.00, p=0.37, r=0.18). There was no difference in verbal assistance in the form of instruction between the Universal Design Jeans and the Commercial Jeans (LF: T=1.00, p=0.655, r=0.13; MF: T=12.00, p=0.735, r=0.07: HF: T=43.00, p=0.114, r=0.32). Manual assistance was only required a significant amount of task time from the caregiver at a high (or total) level for children with HF with the Universal Design Jeans compared to the Commercial

80 Jeans (LF: T=3.00, p=0.180, r=0.38; MF: T=2.00, p=0.273, r=0.22; HF: T=47.00, p=0.047, r=0.41). Medium and low levels of manual assistance were not required in significantly different amounts of task time between the Universal Design Jeans and Commercial Jeans for each group. There was no difference in child affect between these two types of jeans (Negative - LF: T=2.00, p=0.075, r=0.51; MF:T=1.00, p=0.046, r=0.58; HF:T=10.00, p=0.499, r=0.14; Neutral - LF: T=10.00, p=0.5, r=0.19; MF: T=24.00, p=0.721, r=0.07; HF: T=26.00, p=0.308, r=0.21; Positive- LF: T=3.00, p=0.180, r=0.38; MF: T=32.00, p=0.646, r=0.09; HF: T=61.00, p=0.084, r=0.35). For all of the children, there were no differences in time the garment was incorrectly oriented between the Universal Design Jeans and the Commercial Jeans. When dressing and undressing using the Custom Design Jeans (data includes both Custom Design 1 and Custom Design II), the children with HF required small amounts of verbal assistance from caregivers, in the form of encouragement (HF: 1.15±0.95%) and instruction (HF: 7.76±0.81%). Manual assistance was only required from caregivers at a ceiling level of 100±0% of the time for the LF Group, consistent with their functioning level. Negative affect was not displayed by children in any of the groups. Most of the time, the children displayed neutral affect during the task (LF: 72.22±4.1%, MF: 39.3±4.01%, HF: 20.98±2.5%). Positive affect was displayed by all groups but mostly by children in the HF Group (LF: 3.22±3.1%; MF: 8.95±3.3%; HF: 62.18±3.7%) and not at all by the Low Functioning Group. For all of the children, the garment was correctly oriented at the end of the task (See Table 4). There were no significant differences in dressing time between the Custom Design Jeans and the Commercial Jeans (T=255.00, p=0.644, r=.06), but undressing time took longer in the Commercial Jeans (T=66.00, p=0.001, r= 0.44). Results of the time to complete the dressing task according to each group show no statistically significant

81 dressing time difference (LF: T=12.00, p=0.753, r=0.09; MF: T=29.00, p=0.433, r=0.16, HF: T=39.00, p= 1.00, r=0). For the undressing task, children with MF and HF took longer to undress in the Commercial Jeans compared to the Custom Design Jeans (Figure 12; LF: T=10.00, p=0.917, r=0.03; MF: T=11.00, p=0.028, r=0.45; HF: T=1.00, p=0.003, r=0.60). For task behaviors during testing of the Custom Design Jeans, there was no difference in verbal assistance in the form of encouragement between the Custom Design Jeans and the Commercial Jeans (LF: T=5.00, p=0.285, r=0.31; MF: T=13.00, p= 0.600, r=0.10; HF: T=41.00, p=0.477, r=0.14). Children with HF required significantly more verbal assistance in the form of instruction with the Custom Design Jeans compared to the Commercial Jeans (LF: T=1.00, p=0.655, r=0.13; MF: T=22.00, p=0.176, r=0.27; HF: T=6.00, p=0.028, r=0.45). There was no difference in caregiver manual assistance of any type between the Custom Design Jeans and the Commercial Jeans. Negative affect was not displayed in a significantly different amount with the Custom Design Jeans (LF: T=21.00, p=0.28, r= 0.64; MF: T=5.00, p=0.128, r=0.31; HF: T=18.00, p=0.499, r=0.14). Neutral affect was displayed by the children in every group significantly more during dressing with the Custom Design Jeans compared to the Commercial Jeans (LF: T=0.0, p=0.043, r=0.58; MF: T=47.0, p=0.047, r=0.41; HF: T=64.0, p=0.05, r=0.40). A positive affect was displayed a significant amount of time only with children with HF with the Custom Design Jeans compared to the Commercial Jeans (LF: T=0.00, p=0.109, r=0.44; MF: T=27.00, p=0.959, r=0.01; HF: T=2.00, p=0.006, r=0.56). For all of the children, there were no difference in time the garment was incorrectly oriented between the Custom Design Jeans and the Commercial Jeans.

82 Self-Reported Wearing Times and Feedback Results After Visit 1, caregivers were asked to log the number of times and length of wear the child wore each of the prototypes (Universal Design Jeans and Custom Design Jeans; Appendix C). 80% of families self-reported results (Table10).

Table 10 Average self-reported wearing frequency and duration with standard deviation in parentheses throughout the 3-week Usability Testing period based on reports from the participant log.

Prototype Low Medium High Functioning Functioning Functioning Universal Frequency (count) Not provided 4 (1.5) 5 (0) Duration (hours) Not provided 2 (0) 4 (0.58) Custom Frequency (count) Not provided 3 (1.15) 6 (2.4)

Duration (hours) Not provided 2 (0) 5.125 (0.63)

100% of families provided written feedback on the wearing log that included child and caregiver perceptions. Caregivers of children with LF described the ease of using the magnetic fasteners for both prototypes and the children’s positive comments related to both of the prototypes’ style and fabric texture. Caregivers of children with MF positively described both of the prototypes’ style and fit, and reported the children’s negative comments regarding the Universal Design Jean’s side seam magnetic fasteners. The children verbally reported these fasteners as difficult to complete while seated. Caregivers of children with HF reported their children’s positive comments about the prototype style, fit, and comfort. These caregivers also reported their children’s negative comments about the Universal Jean’s side seam magnetic fasteners. With the children’s high level of functioning, these Universal Design Jean fasteners often opened when

83 children engaged in physical activity. However, these caregivers also noted self-selecting not to use the prototypes outside of testing despite the children’s requests, due to inclement weather concerns or necessity to wear a uniform to school. Note that one caregiver reported washability results, which were beyond the scope of the study

Discussion The results of this study highlight typical performance of children with motor and/or sensory impairments during the ADL task of dressing with clothing they were on a typical day (Self-Selected Pants) and standard clothing designed for their typical peers (Commercial Jeans). These findings are a novel contribution to the body of knowledge, in that, to date, observation and analysis of typical dressing behavior for children with disabilities has not been studied previously (Banerjee, Kundu, & Sarkar, 1995; McKelvey, Sisson, van Hasselt, & Hersen, 1992). First, it was interesting yet not surprising to find that for all participants, their Self-Selected Pants were elastic waist sweatpants. These pants require no fastener and have a large amount of fabric stretch(based on the knit construction) to accommodate ease with dressing, both for the children who typically dress more independently (MF and HF groups) and the children who are completely reliant on caregivers for dressing (LF). Looking at the participants’ task performance with the Commercial Jeans in comparison to the Self-Selected Pants, we observed the participants taking longer to dress and undress and the struggle some children had with the typical jeans zippered fastener. One reason for the longer dressing time could be related to inexperience with this type of standard garment. However, it could also be related to some unmet design metrics based on the 5 F Framework: (1) Fit: the standard jeans were not designed for the participants’ body size or shape, (2) Function: the fastener location may not have been an issue with

84 the Commercial Jeans, based on results from Custom Design I also having a fastener located in the front fly, (3) Fabric: the Commercial Jeans were 100% cotton woven fabric without any stretch, (4) Fastener: the zipper fastener was difficult for some of the participants, and (5) Fashion: the aesthetic of the jeans were not customized in any way to the participants’ preferred style. It was also interesting to observe the LF participants displayed negative affect at times during the task with these jeans. These children complained and were upset while being dressed by their caregiver. Therefore, when we analyze the differences between the pants that the child/caregiver self-selects and commercial jeans designed for the child’s typical peer group, we see the inherent design challenges. Children who are dressing more independently (MF & HF) and children who are more reliant on a caregiver (LF) both struggle with aspects of the commercial design. There is an unmet need in pant fit that may impede the dressing task and/or psychosocial discomfort of ill-fitting clothing. There is an unmet need in pant fabrication that may impede the dressing task due to lack of garment stretch. There also may be issues of fabric comfort, which was beyond the scope of this study. There is an unmet need for fastener type: the zipper was challenging to manipulate for some of the participants. It is unclear if there was an unmet need for fastener location, since the Custom Design I had a similar fastener location nor if there was an unmet need for fashion, since the commercial jean was standardized and not customizable. Had we offered any commercial jean available on the market, we may have identified styles that reflected the participant’s aesthetic. It was also interesting to note the negative affect displayed by children in the LF group. These children are completely reliant on their caregivers for dressing, and given that may be adding to caregiver stress during the task.

85 Design of the garment prototypes (Universal Design and both Custom Design) was based on Baseline Data Collection findings (functional characteristics of the participants, based on physical therapy assessments, Dressing Board fastener results, and observational video of the children dressing and undressing with both Self-Selected Pants and industry standard Commercial Jeans) and how we incorporated those findings into our 5F Framework. By addressing each of the 5 F’s, we were able to potentially address the users’ broad range of clothing-related needs. For the children participating in this study, the Five F’s were (1) Fit: we custom fit all garment prototypes for each child based on their individual size and shape, (2) Function: we placed the fasteners in accessible areas based on functioning level and range of motion; (3) Fabric: we chose a fabric for the prototypes that had a soft texture and sufficient stretch content for comfort and ease with dressing, (4) Fastener: we chose magnetic fasteners based on Dressing Board data results, and (5) Fashion: we selected style and garment embellishment based on the subject’s personalized aesthetics and interest in peer acceptance (see Figure 7). Usability testing of the garment prototypes identified interesting differences in task performance of the children dressing and undressing in the Universal and Custom jeans in comparison to the industry standard Commercial Jeans. Looking first at the analysis of the Universal Design Jeans, it took significantly longer for the all of the children to dress in the Universal Design Jeans, yet significantly less time to undress compared to the Commercial Jeans (see Figures 14-15). Based on our observations of the dressing task performance, the verbal and manual assistance needed for some of the participants, and the negative feedback regarding the fastener location, it is understandable that the Universal Design Jeans took longer to dress. The multiple fasteners made the undress time faster than the Commercial Jeans. Frequency and wear duration was similar for both of our garment prototypes. Several caregivers stated that

86 wear duration was limited to after school, thus reflecting low duration times. It is surmised that the caregivers were attempting to give equal opportunity for home wear testing. Usability testing and caregiver logs findings interpreted via our 5F Framework reveal that for the Universal Design Jeans: (1) Fit was appropriate for each child based on their individual size and shape, (2) Function was not successfully achieved for our participants based on the placement of multiple magnetic fasteners along both side seams from the waist to the lower thigh area and from the top of the calf to the ankle fastener, (3) Fabric choice of the 11 oz. 61% Cotton 31% Modal Rayon 6% Polyester 2% Spandex denim fabric was reported as soft and had the right amount of stretch, (4) Fastener type was appropriate, and (5) Fashion reports of the jeans style and embellishments were uniformly positive For both of the Custom Design Jeans, there were no significant differences for the time to complete the dressing portion of the task in comparison with the Commercial Jeans for any of the participant groups, it is interesting to note that the children with LF took less time to dress in the Custom Design Jeans (although not by a statistically significant amount; Figure 16), meaning the task was shorter for the caregivers with these prototypes. For the other groups, there was no manual assistance needed and some children needed in the form of verbal instruction (HF). It is interesting also to note that some of the participants were more positive in affect with both the Custom Design Jeans (HF). Usability testing and caregiver logs findings interpreted using our 5F Framework reveal that for the Custom Design Jeans: (1) Fit was appropriate for each child based on their individual size and shape, (2) Function was successfully addressed via the two versions of custom placed magnetic fasteners along the fly and base side seams of the leg, and the second version with the overlapping front flap design, (3) Fabric was the 11 oz. 61% Cotton 31% Modal Rayon 6% Polyester 2% Spandex denim fabric and was reported

87 as soft with the right amount of stretch, (4) Fastener was appropriate for the placement since it was placed according to child functioning level, and (5) Fashion reports of the Custom Design styles and embellishments were equally uniformly positive.

Conclusion and Future Directions After completing this study, we were able to determine typical dressing and undressing behaviors for children with disabilities participating in our study using clothing the children wear on a typical day (Self-Selected Pants). We identified and compared these dressing behaviors with similar pants that are commercially available in the marketplace, designed for the children’s typical peer group (GAP brand Commercial Jeans). Based on these data and participant assessments, we were able to design and test two categories of garment prototypes aimed to facilitate child independence with the dressing task. Further, we measured, using quantifiable and qualitative data, differences in dressing task performance with our potential design solutions versus standardized commercial garments and the children’s preferred garments, as well as considerations that impact psychosocial well-being and QOL of the children and caregivers, such as garment functionality and aesthetics, user expressiveness, and product accessibility. Based on this process, we were able to identify that children with disabilities have varied levels of function relative to the ADL task of dressing and therefore do not represent a homogenous consumer group for products aimed at addressing ADLs. Moreover, some of the functional limitations of this population reveal that the caregiver plays the key role in the task and may have dressing task needs that differ from a child performing the task independently. Second, we created a novel framework (5F Framework, see Figure 2) that incorporated user needs from a broad perspective and could be used as a checklist for designers. Third, using our framework we designed, tested, and evaluated novel

88 inclusive jeans for our participants. Usability testing with these two designs (Universal Design Jeans and Custom Design Jeans) gave us valuable insight into how well these adaptivejeans performed in comparison to what the children typically wear, and in comparison to commercially available designs of the same product type (i.e. jeans). We discovered the importance of fastener type and placement and that one Universal Design for adaptive jeans may not work for all users/caregivers. A key goal for this study was to make our prototypes (the Custom Design Jeans and the Universal Design Jeans) accessible to the broader community through open access sharing aspects of the prototype design and design framework as presented in this paper. Such findings are important to share because they can be used to (1) provide insight into types of ADL challenges faced by this populations, (2) guide others in a similar design process, and (3) ultimately potentially allow for product design that will enhance independence for children with disabilities. Moreover, we can design products that may enhance QOL by promoting user independence, participation, and socialization. ADLs, such as dressing, may be facilitated with user-centered design solutions, such as those prototypes presented in this study. Understanding the needs of under-represented users can impact design considerations in a significant way. By using a broad methodological approach, we can identify users’ needs from multiple perspectives, including psychosocial, aesthetics, accessibility concerns, as well as meet functionality. Future studies will include increased sample size, testing participants with similar forms of impairments, and expanding to other types of garment solutions addressing the challenge of dressing (such as shirts). In addition, future studies could measure QOL changes for children and caregivers as well as caregiver strain after longer periods of use of the designed garment.

89 Chapter 5

CONCLUSION

Children with motor and/or sensory impairment have the potential to be delayed with self-care skills, such as dressing or completely reliant on caregivers to perform these tasks. We can facilitate the child’s independence with dressing skills through the design of clothing that addresses user/stakeholder needs using a holistic approach and a user- centered process, and a framework merging the domains of fashion design and functional design. The purpose of this dissertation was to use a combined and innovative approach to the design of clothing aimed at addressing independence with ADLs based on user dressing-related challenges identified via a heterogeneous sample of children with disabilities and their caregivers. In order to create potential design solutions to the problem of independent dressng that aimed to address the broad needs of these users/stakeholders, we began by identifying the range and variability of reported ADL challenges that may impact the quality of life for this sample population (Aim 1; Chapter 2). In order to determine those broad user/stakeholder needs, we used an expanded model for identifying user clothing-related needs (Hall & Lobo, 2017; Appendix A). In Chapter 2, we surveyed and interviewed individuals with disabilities and their caregivers to identify challenges during the user’s typical day. These data gave us insight into user/stakeholder functional challenges with ADLs and how these challenges impacted the users’ quality of life. We analyzed these data via grounded theory and using qualitative software to identify the most commonly reported ADL for this sample population: independent dressing. Data also revealed themes describing specific clothing and dressing related issues that we analyzed via our expanded FEA2 framework in order to categorize user’s needs.

90 Based on the range and variation of reported user/stakeholder needs, we identified, gathered, and provided commercially available alternative solutions that aimed to address those needs and disseminated it through an open access website targeting individuals with disabilities, caregivers, and related stakeholders (Aim 2, Chapter 3). By identifying the most frequently reported ADL for this population, we were able to create a website resource to order to facilitate the dissemination of information that aimed to promote dressing independence and clothing resources for this underserved community (Aim 2). We used the survey and interview data from Aim 1 to define the problem and inform the website content. Interview participants served as an advisory group to tailor content and website navigation appropriately. Based on this process, we were able to create the FashionAbled.org website, featuring requested for information such as dressing task guidance, commercial shopping resources for adaptive clothing, and a guide to adapting clothes at home. Next, we used these data (Chapters 2-3) to design, co-create and test prototypes that combined the approaches of fashion and functional design, with the aim of addressing the identified user challenges (Chapter 4). Furthermore, we designed, tested, and evaluated our own garment design solutions based on Aim 1 and Aim 2 data. Ten families of children with disabilities and their caregiver co-designed inclusive apparel aimed at promoting independent dressing. We began by assessing the children via physical therapy assessments and a quality of life questionnaire to determine children’s functional characteristics. We then collected baseline data of children manipulating typical clothing fasteners to identify closures the children could operate independently. Baseline data also included recording children’s typical dressing time and behavior using their own self-selected pants and that same routine with commercially available standardized jeans. These data informed our design process for the prototypes and we

91 defined a framework (5Fs) to guide our metrics. Development of this framework was key in that it delineates design metrics and constraints that could be used by other designers and/or apparel industry brand looking to design clothing for this market. We explored design solutions to begin to identify whether adaptive clothing can be designed universally or requires a custom solution. Through case study usability testing, we evaluated via behavioral coded videos and qualitative caregiver feedback as to the feasibility of our two categories of designs. Our findings first revealed that the children could be categorized by their functional characteristics and their level of functionality during the dressing task (Low Functioning, Medium Functioning, High Functioning Groups). From this we revealed that some users are more independent with dressing than others, and therefore may require separate design considerations. Quantitative and qualitative results revealed our Universal Design concept was not as successful as the two Custom Designs. Fastener placement was key to this determination and prompts further exploration as to the viability of universality of clothing design for this population. This dissertation work contributed to the body of knowledge by providing an expanded model for user clothing needs (FEA2; Hall & Lobo, 2017) and outlining a process of user-centered design that keeps the user/stakeholder’s needs and heuristic expertise at forefront. Moreover, we believe the 5 F Framework to be a useful and practical applied tool for navigating this design space. Although this series of studies used a small and heterogeneous sample size, we believe the results provide relevance for the design community, especially when engaged with this under-represented population of users. Future research will expand by increasing the sample population by both size and consistency of user’s level of functioning with the dressing task in order to further identify design solutions. Moreover, we intend on future research improving on areas

92 identified by the 5F framework, such as improved fastener design and clothing fit standards.

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102 Appendix A

DESIGN AND DEVELOPMENT OF THE FIRST EXOSKELETAL GARMENT TO ENHANCE ARM MOBILITY FOR CHILDREN WITH MOVEMENT IMPAIRMENTS

Martha L. Hall & Michele A. Lobo (previously published in Assistive Technology, 2017) Children with a variety of diagnoses have impairments that limit their arm function. Despite the fact that arm function is important for early learning and activities of daily living, there are few tools to assist movement for these children and existing devices have challenges related to cost, accessibility, comfort, and aesthetics. In this paper, we describe the design process and development of the first garment-based exoskeleton to assist arm movement in young children with movement impairments, the Playskin LiftTM. We outline our design process, which contrasts with the traditional medical model in that it is interdisciplinary, user-centered, and addresses the broad needs of users, rather than device function alone. Then we report the results of field-testing with the initial prototype with respect to our design metrics on a toddler with significant bilateral arm movement impairments. Finally, we summarize our ongoing development aimed at increasing comfort, aesthetics, and accessibility of the garment. The interdisciplinary, user-centered approach to assistive technology design presented here can result in innovative and impactful design solutions that translate to the real world.

Keywords: design for disability, functional design, user-centered, wearable technology, assistive technology, open source design

103 Introduction Mobility and exploration are important components for typical physiological and cognitive development in children (Gibson, 1995; Thelen, 2000). Early active mobility and exploration impacts the progression of cognitive, language, and social skills (Lobo, 2008; Needham, 2000). For children with limited early mobility and exploration, such as related to the diagnoses of arthrogryposis multiplex congenita (arthrogryposis), brachial plexus palsy, or brain injury, movement amount and quality is often impaired and there is increased risk for future developmental delays (Lobo, 2013; Lobo, 2015; Rink, 2011). Studies indicate children with physical disabilities who use assistive devices to improve their mobility have improved environmental participation, independent activity, and self-concept (Cowan, 2005; Henderson, 2008; Moir, 2010;

Ostensjø, 2005; Ryan, 2009). Although there exist a variety of devices, such as scooters, crutches, and wheelchairs, to assist mobility for children with leg movement impairments, there are few commercially available devices to assist mobility for children with arm movement impairments. One system, the Universal Exercise Unit (Therasuit, LLC, Largo, FL), involves attaching elastic cords between the child and a large, stationary structure external to the child to provide assistance to lift the arms (Bailes, 2011). Key limitations to this type of solution are that it is expensive, bulky, stationary, and is not feasible for use in the natural environments children typically experience. Another example of an existing solution is the Wilmington Robotic Exoskeleton (WREX). This is the only commercially available exoskeleton children can wear to assist arm movement (Haumont, 2011). The WREX consists of either steel or 3D printed exoskeletal links that extend alongside the upper arm and forearm with elastic bands that stretch across the shoulder and elbow joints to produce torque and elevate the child’s arms against gravity.

104 Key limitations to this solution are that it is expensive, bulky, difficult to obtain, unattractive, and that it must attach to a chair or plastic trunk brace. While the WREX has been shown to improve function for children with a variety of diagnoses, it is clear there are key needs of users the device does not meet (Babik,et al., 2016; Haumont, 2011). The result is that many families who acquire the device choose to discontinue using it. This was the scenario for the participant involved in this study. The purpose of this manuscript is to describe the interdisciplinary, user-centered design process used to develop the first exoskeletal garment for rehabilitation, the Playskin LiftTM. The Playskin LiftTM was developed to address the need for a rehabilitative device to assist mobility for children with arm movement impairments. The goal was to create a device that could provide immediate assistance to help children lift their arm(s) against gravity. Our team has shown that providing this anti-gravity movement assistance can improve reaching and playing, two key behaviors that facilitate early learning, independence, and participation, for a toddler with bilateral arm movement impairments (Babik et al., 2016; Lobo et al., 2015). We have also shown that devices that provide this type of movement assistance can potentially serve as rehabilitative tools to improve strength and independent function over time (Babik et al., 2016). Below we discuss the development of the Playskin LiftTM passive exoskeletal garment. We outline the specific design methodology for our process (Methods) used and the design outcome (Results). The project was led by a pediatric physical therapist, with team members from the mechanical engineering and apparel design disciplines. The design approach utilized contrasts with the traditional model for assistive technology by applying an interdisciplinary, user-centered process that addresses not only the user’s functional needs for physical assistance, but also other key user needs. The traditional

105 medical model tends to involve engineers working in an environment isolated from end users and designing assistive and rehabilitative devices focused on improving bodily function, while inadequately addressing other needs of users, such as accessibility, cost, and appearance (de Ana, 2013; DeMarco, 2011). For example, available devices may function to assist with movement, but they are typically expensive and have limited availability (Yan, 2015). Moreover, these devices can be physically uncomfortable as well as potentially stigmatizing for users and their families by drawing unwanted attention to users’ impairments (Parette, 2004). This can be seen in traditional power wheelchairs and exoskeleton or robotic devices, for instance. By combining design processes from apparel studies and engineering and applying them to the domain of health science, we present an integrated approach to rehabilitative device design that can serve as a model for developing innovative and impactful devices that translate out of labs and clinics and into the real world of users.

Methods

Participants

The participants in this project were a 23-month old with impaired bilateral arm function due to a diagnosis of arthrogryposis multiplex congenita (arthrogryposis) and his parents. This child had a history of muscle fibrosis, decreased muscle mass and symmetrical contractures in his shoulders, elbows, hips, knees, and ankles. As a result, even after stretching restored functional passive range of motion in his arms he could not fully lift his arms (shoulder flexion) or bend his elbows (elbow flexion) against gravity. The child was able to sit, transition from sitting to lying down, and roll on the floor independently. The child exhibited many typical cognitive abilities for his age, such as recognizing and seeking out his family, requesting desired toys, and cause-effect

106 learning. Without assistance, the child could reach for and contact objects at his hip level but could not actively move either arm against gravity into more than 15 degrees of shoulder flexion and thus could not contact objects at chest or eye level. This paper focuses on design process and device outcome, while impact of the Playskin LiftTM on function for this participant is more thoroughly detailed in Lobo et al., 2016.

Design & Prototyping The design process for this project used an interdisciplinary approach and kept engagement with the users central throughout. The project team was led by a pediatric physical therapist and consisted of an apparel design expert, a mechanical engineering professor, five undergraduate engineering students, and two professional mechanical engineers. Team members worked together and with the family on all stages of the design process from concept development through final testing. The engineering members led bench testing efforts, the apparel expert led efforts to design the garment, select textiles, and integrate mechanical components within the garment, and the team leader led the overall design process and data collection. In order to holistically address the participants’ needs related to function, expressiveness, aesthetics, and accessibility, design approaches from engineering and apparel design were combined (Figure 18; Lamb and Kallal, 1992). The apparel design process focused on three stages: (1) Problem Definition: the team defines the problem according to the client, then researches existing solutions and safety standards, and redefines the problem, (2) Creative Exploration: the team ideates initial design solutions, creates prototypes, and evaluates them, and (3) Implementation: the team refines the prototypes in order to produce a design solution for comprehensive evaluation (Labat & Sokolowski, 1999). In conjunction, we incorporated a typical engineering approach by

107 reviewing safety standards and interviewing the participants to clearly identify relevant measurable metrics for the design problem, noting the limitations and constraints for the final design (Watkins, 1988). Table 11 lists each of the metrics by the corresponding category of user needs (functional, expressive, aesthetic, or accessibility). Metrics were identified via informal, conversational interviews with participants, reviews of safety standards, and domain specific expertise of the team members. The participants had previously discontinued using the WREX so they had clear ideas of what they would and would not like from an upper extremity exoskeleton.

Figure 18 Figure 1. User-centered conceptual model for designing assistive/rehabilitative wearable technology, expanded from the Consumer Needs Model of Lamb & Kallal (1992).

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For this study, the design problem was defined by the team as the need for a device that would help the user lift his arms, while also being discreet, comfortable, safe, aesthetically appealing, and affordable. Research on existing devices (described in the Introduction) and design processes specifically for users with disabilities suggested that in order to design products users would choose to wear, designers need to address the spectrum of wearable technology needs for the user, not only needs related to improving mobility and function, but also needs that impact product acceptance (Wilkinson & De Angeli, 2014). In this case, our final product needed to provide physical support, without stigmatizing the user by negative social psychological and cultural associations with disability (Freeman, Kaiser, & Wingate, 1985; Wingate, Kaiser, & Freeman, 1987; Lamb, 2001; Shields, 2009;

109 Wilkinson & De Angeli, 2014). Appearance management in the form of dress may be used to positively present the individual with disabilities by concealing the source of the disability and allowing the individual to present other, arguably more positive, perceiver variables (Freeman et al, 1985; Wingate et al., 1987). However, individuals with disabilities may alternatively choose not to use dress to conceal embodied differences but rather to express other more salient identity characteristics, including aesthetic and expressive dress preferences. For this study, the participants reported a desire for discretion during informal, conversational interviews. They wanted a device that could be concealed beneath the child’s typical clothing. Since the final device design would be a child’s wearable, the project team also researched federal regulations for textile and apparel product safety for children’s wear (United States, 2008). The Consumer Product Safety Commission provides guidelines for selecting non-flammable and non-toxic textile materials, as well as identifying potential choking hazards. The final device design would need to comply with these guidelines. Based on client interviews and our review of existing solutions, safety standards, and design processes, the team identified key outcome metrics (Table 11) and redefined the problem according to these metrics. We learned that the participants needed a wearable device that would provide immediate physical assistance for the child, be comfortable and safe, and look discreet according to the participants. The design goal was to design and fabricate an exoskeletal garment that would lift the child’s arms against gravity, while being comfortable and non-stigmatizing for the participants. A key focus was to make the design outcome accessible to other families by keeping the garment affordable and the design simple enough that an open access do-it-yourself manual could be created for use across communities.

110 Table 11 Table 1. Metrics, desired target outcomes, and method of assessment during field testing for each metric relating to the functional, expressive, aesthetic, and accessibility needs identified via informal, conversational interviews with the participants, reviews of safety standards, and domain specific expertise of the team members.

Metric User Needs Targeted Outcome Assessment Method Observation and Amount of arm 85 +/- 5 degrees of goniometric Functional lift against gravity shoulder flexion measurement of the arm at rest with the garment Weight of Weight of prototype on Functional < 230 g prototype balance Functional range of Experimenter passively Lack of restriction motion for shoulder moved the child’s arms of movement in abduction/adduction Functional through the range of other directions at (0-130°) and motion as the garment the shoulder flexion/extension (0- permitted 130°) Comply with Visual inspection of the childrenswear safety final prototype and Safety Functional standards: no small research on safety of all parts, drawstrings, or materials used hazardous materials Emotional affect of the child was assessed User able to wear the throughout the testing garment without based on facial expressing emotional expression and Comfort Functional signs of discomfort or vocalizations. Skin showing physical irritation was assessed signs of skin irritation by visual inspection of the skin after a 1-hour period of wear.

The parent was timed donning and doffing the Ease of Functional < 5 minutes garment for the first donning/doffing time without any instruction.

111 Design that allows for the provision of different levels of Provision of variable support to variably levels of support and assist different users goniometric Scalability Functional that contrast in size measurement of and ability and to corresponding arm lift variably assist the angles during testing same user as the user’s abilities change across time User/family satisfaction with User rating of aesthetic Product appeal Aesthetic design, positive or appeal on a scale from neutral ratings for 1(low) - 5(high) aesthetics Identify the location with the highest level of Maximum protrusion protrusion of the of the components of components of the Sleekness Aesthetic the garment no more garment and measure than 1 cm from the the perpendicular child’s body distance to the child’s body using a tape measure Typical wear and care Visual inspection of the Quality Aesthetic should cause no garment after 1 hour of construction damage or distortion wear and after washing Matches users’ needs Social for discretion or User written feedback psychological Expressive attention based on on perception survey comfort users’ early input on design preferences

< $100.00 in material Sum of final material Accessibility Cost costs per unit costs

Solution that lends Compilation of a itself to the creation of complete material list an open-access do-it- Availability Accessibility and step-by-step yourself (DIY) illustrated DIY material list and fabrication manual fabrication guide

112 Prototype Testing Once the design problem and metrics were defined, the next phase in the design process was to ideate initial design solutions, create first prototypes, and evaluate their effectiveness. This was a cyclical, iterative process with user testing and feedback essential to project success (Figure 19). Prototype testing began with bench testing using a model to assess functionality of lifting mechanisms. The model was a quasi-static model that replicated the user’s arm, simulating the general size, weight, and arm moment. Three lifting mechanisms were bench tested to determine feasibility for use in the exoskeletal garment. These included (1) using a magnet array embedded in the sleeves and body of the garment, (2) a system of embedded pulleys and elastic cables to provide lift, and (3) steel springs encased in the sleeves that would support the weight of the arm.

Figure 19 Figure 2. Our cyclical design process for this project.

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Six field testing sessions were then performed where mechanisms deemed functional in bench testing were incorporated into garments and multiple prototypes were tested briefly within sessions with participants to assess performance and fit of the garments and to gain feedback about which prototypes participants preferred the team pursue. The final prototype emerged from this process and detailed measurements for all project metrics were taken at the final 2-hour home field testing session. Table 1 lists the desired target outcome and a description of the planned assessment methods to be used during field-testing for each metric. Complete metric data on unsuccessful prototypes were not collected.

114 Results

Prototype Testing

The magnet array did not provide enough lift for the static model arm. The pulley and cable system lifted the model arm during bench testing but performed poorly when integrated into garments and field tested with the participants primarily due to issues related to comfort and function. Steel spring supports proved to be a viable option. The springs were strong enough to support the weight of the model arm and could potentially be made comfortable and discrete via soft encasement within a child’s shirt. Although the springs provided support, they did limit range of motion of the model. The steel springs tested were feeler gauges (long, narrow, and flat metal bands), which provided sufficient arm lift (flexion) but limited shoulder movement in other planes (adduction/abduction, rotation). For this reason, other steel spring shapes were tested. Cylindrical bundles of steel wire were found to provide sufficient shoulder flexion support without limiting shoulder movement in other planes. The wires could be bundled together, sealed with heat shrink tubing, and capped with athletic tape to create insert units. After determining the optimal mechanism for providing lift, the team needed to design a solution to integrate the wire bundles within a child’s garment that was both comfortable and discreet. In order for the wire inserts to function properly for arm support, they needed to maintain proper alignment with the body while the user moved and played. Therefore, the garment needed to have a custom, compressive fit, yet still be comfortable. The team created a prototype based on an infant “onesie” garment: a crewneck long sleeve shirt with a snap front closure and crotch strap. To achieve a close fit, a knit fabrication was needed to maximize user comfort while minimizing garment ease. A polyester blend four-way stretch performance fabric was used for the garment

115 construction. This fabric was chosen because it (1) featured both mechanical and fiber stretch to allow for close and comfortable fit, (2) had a fiber content blend that would keep the user cool and free of moisture, (3) complied with federal safety regulations, and (4) was low cost and easy to clean. Casings were stitched along the garment sideseams from waist level along the sleeve inseam, ending mid forearm to encase the wire inserts. A composite material with a polyvinyl chloride (PVC) face and a knit polyester backing was selected because it was strong enough to house the bundles and thick enough to provide padding between the bundles and the child’s body. The vinyl casings also enhanced the overall garment aesthetic by concealing the wire bundles. To prevent potential rotation of the inserts during user testing, a belt and narrow arm bands, each made with polyester webbing and adjustable hook and loop closures, were stitched to the garment (Figure 20).

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The vinyl casings were designed to allow user access to the wire inserts. The bundles could be easily inserted and removed from the garment. This design feature is deliberate so that the garment not only provides assistance, but also can used as a rehabilitative device. By allowing easy access to the wire inserts, users can change the level of support provided, based on the number and diameter of wires inside the selected bundle. The prototype can provide progressively less support, with the goal of increasing the user’s upper limb function over time. This makes the device customizable and potentially rehabilitative for users.

Field testing the first prototype

The prototype was evaluated relative to the desired outcomes in the child’s home (Table 2). The device was determined to be functional: it lifted the arm against gravity to 90 degrees of shoulder flexion and did not restrict other shoulder movements. With the garment on, experimenters were still able to move the child’s arms through the full functional range of motion. The device was safe and comfortable. The arm straps caused temporary skin irritation but the redness dissipated within 20 minutes. The device was

117 easy for the parent to put on and take off of the user, similar to a typical onesie for children. The device was reported by the parents to be somewhat attractive. The device did not fully meet the users’ needs with regard to expressiveness: parents reported they would like the design and materials to be more discreet. The black fabric, belt and straps were lower profile than the child’s current 3d-printed exoskeleton, but reportedly looked too distinctively different from typical children’s clothing. The device was determined to be somewhat accessible: it was inexpensive, at about $30.00 for materials. However, the design required custom fit and skilled labor to construct.

Table 12 Outcomes from field-testing of the prototype using steel wire bundles as springs inserted in vinyl tunnels in the garment to lift the arms.

Metric Outcome Amount of arm lift 90 degrees of shoulder flexion at rest with the garment against gravity Weight of prototype < 140 g Lack of restriction of movement in other Full functional range of motion permitted at the directions at the shoulder shoulder No small parts, drawstrings, or hazardous materials Safety were utilized The child showed positive affect throughout testing Comfort and did not show any signs of skin irritation (areas of redness) that lasted for more than 20 minutes. Ease of Donning time - 65s donning/doffing Doffing time - 30 s Three separate wire bundles supported the arms at about 30, 60, or 90° of shoulder flexion. Wire number, Scalability diameter, and length could be changed in insert bundles to vary levels of support for users of different sizes and abilities.

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User rated the aesthetic appeal somewhat attractive Product appeal (4/5)

Sleekness Maximum protrusion of 2 cm in the axilla No noticeable change after testing; long-term Quality construction durability to be determined. Social psychological User reported desire for a more discreet product comfort Cost Final material costs: $29.54 A complete material list and step-by-step illustrated DIY fabrication manual detailing how to fabricate the Availability garment and spring inserts was completed and posted on-line

In addition to making the garment appear more like typical children’s clothing, the family identified some other needs for improvement. First, the family suggested the garment could made be easier to don. The prototype had a snap closure front and crotch. According to the family, the snaps made the garment easy to doff, but difficult to don. Second, there was concern from the family that the selected fabric might be too hot for the child in the summer and may require special laundry care. Lastly, the family requested improvement of the aesthetics and expressiveness of the overall design. The family did not prefer the black color. They also suggested streamlining the design so that it was more discreet (such as by eliminating the stabilizing belt and straps), or using more child-friendly materials and design details to reflect the user’s typical clothing style.

Implementation The final phase of the design process involved refining the prototype and re- evaluation with the user in order to produce a design solution. After analyzing test results and user feedback, the team created a refined prototype that retained design features that

119 met or exceeded project metrics and incorporated improvements suggested by the participants. These improvements included changes to the garment fabrication and design. To make the garment more aesthetically pleasing, more expressive, and easier to clean, a new knit fabric was selected. Since, the device required a close fit in order to function properly, the new fabric needed to retain inherent stretch properties. A nylon spandex powernet fabric provided sufficient stretch with improved breathability compared to the black polyester blend. The powernet is machine washable and the mesh structure of the fabric allowed for quick air drying, resulting in improved product care and maintenance. Powernet is available in several flesh tone and fashion colors, thus improving device expressiveness by being customizable for each user’s style preferences. The composite material used for the casings is also offered in an extensive color range from which users can select. The design of the device was changed as well to improve ease of use for the parents and overall aesthetic. The garment closure was changed to make the device easier to don and doff. The snap closure was replaced with a sport zipper that was backed with a self-fabric placket. The zipper was quicker and easier to use and the placket protected users’ skin from zipper teeth. The design was streamlined to further improve aesthetic and expressive properties. The crotch strap was removed for children after infancy, and the improved stretch and strength characteristics of the powernet eliminated the need for the belt strap. Arm straps were detached, so they could be used only if needed in order to prevent the inserts from shifting (Figure 21).

120 Figure 21 Figure 4. The refined prototype (Playskin Lift™), shown with the removable wire bundles (bottom). The device is made with white nylon spandex powernet fabric with a zipper closure. The crotch strap and belt have been removed. The white soft Velstretch™ wrist straps are detached for use if needed. The casings under each arm are made with polyvinyl chloride (PVC) composite fabric.

Following completion of improvements, the device was re-evaluated with the participants. The device retained its functionality, and the family was pleased with the stylistic and material changes. The design solution for this project was an exoskeletal garment, the Playskin LiftTM, that (1) assists users in lifting their arms against gravity to facilitate play, (2) is comfortable, low-profile, aesthetically pleasing, and allows for stylistic expression, and (3) is inexpensive and easy to maintain. The cost of materials for the refined prototype was further reduced from about $30.00 to $10.00.

121 Simplification of the product design and ease of sewing with the new fabric meant further reduction in cost for potential manufacturing. Cost and ease of manufacture are important factors when discussing garments for young children because they typically outgrow their clothing every few months.

Discussion

Summary of the Project

This manuscript describes the interdisciplinary, user-centered design process used to create the Playskin LiftTM exoskeletal garment to assist arm mobility for a 23-month- old child with bilateral arm movement impairments. The team wanted to meet participants’ needs by creating a device that would both assist the child while also potentially serving as a rehabilitative tool by providing variable levels of arm support over time. This can be achieved by varying the number and diameter of the wires incorporated in the support bundles. In addition, the device needed to look appealing and feel both physically and socially comfortable to the participants. According to testing and participant feedback, the design solution, the Playskin LiftTM, met a broad range of design metrics. It (1) lifted and supported the user’s arm to 90 degrees of shoulder flexion without limiting other movements, (2) was comfortable and safe, (3) was easy to don, doff, and maintain, (4) was aesthetically pleasing, (5) was expressive, in that it was low- profile and discrete, and (6) was accessible via an online DIY guide (see below). The exoskeletal garment, when worn, also effectively improved the participant’s ability to reach for and contact objects across a larger reaching space, to look at objects while contacting them, and to engage in more complex interactions with toys during play activities (details in Lobo et al., 2015). The child could reach for objects more often at

122 hip, chest, and eye level, had improved visual motor coordination, and showed improved ability to manipulate objects when wearing the garment.

Accessibility Because the number of children with arm movement impairments is too large for any one team to support, our team aimed to increase accessibility of the device by creating a detailed material list and step-by-step illustrated do-it-yourself (DIY) fabrication manual (Figure 22). This manual is openly accessible for download via the corresponding author’s faculty web page (http://sites.udel.edu/pt/michele-lobo/).

The open access manual allows us: (1) to effectively disseminate instructions to the community and (2) to create a culture of co-creation. Disseminating information through a communication tool readily accessible by the public expedites widespread

123 availability. In addition to providing the community with design solutions, the open source platform creates an environment focused on end users and collaboration. It allows us to explain the skills and illustrate the steps necessary to create our design solution, rather than simply providing the solution as a commercial product. In this way, individuals are equipped to innovate and contribute to the evolution of new solutions for a much wider variety of challenges.

Significance of This Project This study is significant in that it describes the design process behind the first soft exoskeletal garment for rehabilitation. Exoskeletal technology is fairly recent and these devices are typically made from bulky, heavy metallic or plastic materials that do not interface well with users (Haumont, 2011). Attachment, comfort, cost, and appearance of these devices remain key challenges (Babaiasl et al., 2015; “Device offers giant step forward,” 2015; Lajeunesse et al., 2015). This study provides an important first step in rethinking exoskeletal design, moving towards softer materials, improved user interface, comfort, and appearance, and lower cost, by embedding exoskeletons within typical clothing. Ongoing advancements in textile science (De Rossi & Veltink 2010) and soft robotics (Kim, Laschi, & Trimmer, 2013) bring the promise of further innovations in this new area of soft exoskeletons.

This study is also significant in that it provides a new interdisciplinary framework and model for assistive and rehabilitative device design. User-centered design is not a new methodology, but it remains relatively novel for the design of medical equipment (Ma, Wu, & Chang, 2007). By keeping users’ broad needs and their feedback central throughout the design process, more desirable medical devices that people will choose to use can be designed. Moreover, this design model engages users and communities in

124 designing and even fabricating their own devices, empowering them to maximize their physical, psychological, and social comfort. Viewed through this lens, user-centered rehabilitative and assistive devices have the potential to garner higher levels of device acceptance, leading to increased patient compliance and higher dosage of wear. Important future directions for this project include the need to evaluate the assistive and rehabilitative effectiveness of the garment with larger, more diverse samples of users, to improve the function of the device beyond the shoulder, to incorporate active control mechanisms, and to improve the expressiveness of the garment beyond discretion, so users can highlight personal style, or other desired identity traits (Hall & Orzada, 2013). It is also important to determine whether families can feasibly use this device for daily assistance, whether children can tolerate wearing the device for longer periods and more frequent usage, and whether daily intervention with the device has any lasting impact on assisted function (with the device) or independent function (without the device) across time.

Conclusion Rehabilitation devices tend to be narrowly defined in scope, with focus remaining solely on improving physical function. Often these devices are inaccessible to users due to prohibitive cost and limited or restricted availability. This project exemplifies the importance and impact of an interdisciplinary, user-centered approach to medical device design. The design process incorporated the identification and measurement of defined metrics and the development and testing of prototypes aimed at meeting these metrics (engineering design model) using a cyclical, user-centered design process (apparel design model). The solution was a novel and innovative device, the Playskin LiftTM, the first soft exoskeletal rehabilitation garment, that addresses a broad range of functional, aesthetic,

125 expressive, and accessibility needs of children and their parents. The device is accessible to families via an on-line DIY material list and manual, increasing the likelihood that families with children with movement impairments can obtain the device. This design process can serve as a model for those interested in developing novel medical devices that truly meet the needs of users, increasing the likelihood the devices will actually be used to improve health and well-being.

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128 Lobo, M. A., & Galloway, J. C. (2008). Postural and object-oriented experiences advance early reaching, object exploration, and means-end behavior. Child development, 79(6). Lobo, M. A., Harbourne, R. T., Dusing, S. C., & McCoy, S. W. (2013). Grounding early intervention: physical therapy cannot just be about motor skills anymore. Physical therapy, 93(1), 94-103. Lobo, M. A., Kokkoni, E., Cunha, A. B., & Galloway, J. C. (2015). Infants born preterm demonstrate impaired object exploration behaviors throughout infancy and toddlerhood. Physical therapy, 95(1), 51-64. Lobo, M. A., Koshy, J., Hall, M. L., Erol, O., Cao, H. T., Buckley, J.M., Galloway, J. C., and Higginson, J. (2016). Playskin LiftTM: Development and initial testing of an exoskeletal garment to assist upper extremity mobility and function. Physical therapy, 96(3), 390-399. Ma, M.-Y., Wu, F-G., & Chang, R-H. (2007). A new design approach of user-centered design on a personal assistive bathing device for hemiplegia. Disability and Rehabilitation, 29(14), 1077-1089. Moir, L. (2010). Evaluating the effectiveness of different environments on the learning of switching skills in children with severe and profound multiple disabilities. Br. J. Occup. Ther. British Journal of Occupational Therapy, 73(10), 446-456. Needham, A. (2000). Improvements in Object Exploration Skills May Facilitate the Development of Object Segregation in Early Infancy. Journal of Cognition and Development, 1(2), 131-156. Ostensjø, S., Carlberg, E. B., & Vøllestad, N. K. (2005). The use and impact of assistive devices and other environmental modifications on everyday activities and care in young children with cerebral palsy. Disability & Rehabilitation, 27(14), 849-861. Parette, P., & Scherer, M. (2004). Assistive Technology Use and Stigma. Education and training in mental retardation and developmental disabilities., 39(3), 217. Rink, B. D. (2011). Arthrogryposis: a review and approach to prenatal diagnosis. Obstetrical & gynecological survey, 66(6), 369-377.

129 Ryan, S. E., Campbell, K. A., Rigby, P. J., Fishbein-Germon, B., Hubley, D., & Chan, B. (2009). The impact of adaptive seating devices on the lives of young children with cerebral palsy and their families. YAPMR Archives of Physical Medicine and Rehabilitation, 90(1), 27-33. Shields, N. (2009). Self-concept is a concept worth considering. Physical and Occupational Therapy in Pediatrics, 29(1): 23-26. Thelen, E. (2000). Grounded in the world: Developmental origins of the embodied mind. INFA Infancy, 1(1), 3-28. Watkins S. (1988). Using the design process to teach functional apparel design. Clothing and Textiles Research Journal, 7(1): 10-14. Wilkinson, C. R., & De Angeli, A. (2014). Applying user centred and participatory design approaches to commercial product development. Design Studies, 35(6): 614-631. Wingate, S. B., Kaiser, S.B., & Freeman, C.M. (1986). Salience of disability cues in functional clothing: A multidimensional approach. Clothing and Textiles Research Journal, 4(2): 37-47. Yan, T., Cempini, M., Oddo, M.C., & Vitiello, N. (2015). Review of assistive strategies in power lower-limb orthoses and exoskeletons. Robotics and Autonomous Systems, 64: 120-136.

130 Appendix B.

SURVEY QUESTIONS

Challenges with Daily Activities for Individuals with Motor or Sensory Impairment

[Version for Individual with motor/sensory impairment]

This is a survey for individuals, and/or caregivers of individuals, with motor or sensory impairment. The goal of this survey is to identify the daily functional challenges faced by individuals with motor and/or sensory impairment. Questions will relate to challenges with daily activities, such as personal care or social activities, device use, as well as perceptions and experiences with clothing.

This survey is completely voluntary. All answers are anonymous and no identifying information will be collected.

1. Do you have a motor impairment? If so, please describe your motor impairment.

2. Do you have a sensory impairment? If so, please describe your sensory impairment.

3. What is your age?

4. Does your impairment affect your typical daily activities? If so, please describe an example of how your impairment has affected your daily activities.

5. a) Do you currently use, or have you ever used, a device to assist you with activities? If so, please describe any devices you have used for activities.

6. b) What did you like or not like about the device(s)?

7. If the perfect product existed that addressed any of your challenges with typical daily activities, what would that product do?

131 8. a). Do you have difficulty or challenges with clothing? If so, please describe any difficulties you have with clothing.

9. b). Have you found a way to handle with this difficulty? If so, please describe how you have handled this difficulty.

10. What is your favorite clothing to wear and why?

11. Do you consider brand names or style in selecting clothing? If so, what are your favorite brands or styles?

132 Challenges with Daily Activities for Individuals with Motor or Sensory Impairment

[Version for Caregiver of individual with motor/sensory impairment]

This survey is completely voluntary. All answers are anonymous and no identifying information will be collected.

12. Does the individual in your care have a motor impairment? If so, please describe the motor impairment.

13. Does the individual in your care have a sensory impairment? If so, please describe the sensory impairment.

14. What is the age of the individual with motor and/or sensory impairment in your care?

15. Does his/her impairment affect his/her typical daily activities? If so, please describe an example of how his/her impairment has affected his/her daily activities.

16. a). Does he/she currently use, or ever used, a device to assist with activities? If so, please describe any devices he/she have used for activities.

17. b). What did he/she or you like or not like about the device(s)?

18. If the perfect product existed that addressed any of his/her challenges with typical daily activities, what would that product do?

19. a). Does he/she have difficulty or challenges with clothing? If so, please describe any difficulties experienced with clothing.

133 20. b). Have you or the individual in your care found a way to handle with this difficulty? If so, please describe how you have handled this difficulty.

21. What is his/her favorite clothing to wear and why?

22. Does the individual or his/her caregivers consider brand names or style in selecting clothing? If so, what are the preferred brands or styles?

134 Appendix C

INTERVIEW QUESTIONS

Interview questions are focused on both the parent/caregiver and the child with special needs. Either participant may answer any question, with questions re-worded appropriately when directed to child. The comfort of participants is paramount, so questions will be asked with respect and consideration. I have a list of discussion prompts about your child’s typical day, but I want you to feel comfortable giving me additional insights and feedback about any of the topics we talk about today. For the recording, is it alright with you if I use you & your child’s first names?

Do you have any questions for me before we get started?

• Date:

• Interview Location:

• Name:

• Relationship to child:

• Child’s name:

• Child’s age:

• Gender:

• Residence (City & State):

Microphone Test with Participant…then,

ME: State Date & Participant Number for Recording

135 ME: To start, is it alright if we talk a bit about your child’s diagnosis? Can you tell me a bit about it? I am really interested in hearing about (child’s name) typical day. Can you tell me about your morning routine?

• Tell me about getting dressed…

• Picking out clothes…

• How do he/she decide what to wear?

• Do you have favorite things to wear? Why?

• Is it hard to get on? What is it that makes it hard/easy?

• Tell me about breakfast…

• Let’s talk about school…

• What’s the school like?

• Tell me about being at school…what’s your day like at school?

• Are there things you like?

• Are there things you get frustrated about?

• What about other kids at school? How are you with the other kids? Friends at school?

• What do you like to do? Do you have things you like to do for fun? Can you tell me about them…?

• Do you have specific things you are working on with (child’s name)? Or specific goals for him/her? (short term & long term) How about specific tasks during the day?

• Let’s talk about devices…does (child’s name) use anything currently? Anything for assistance or to help with tasks? Tell me about them and what you all like/don’t like about them.

136 • Is there anything else you would like to share about his/her typical day, things that are hard or frustrating to do, or more general things you think are important I know, or give me feedback about?

137 Appendix D

PHYSICAL THERAPY ASSESSMENT PROTOCOL

Materials:

• A paper with ID, date of visit, and visit number for participant

• Assessment Sheets

• 1 goniometer

• 1 cameras 1 tripod, and any accessories necessary for video recording (memory card, power cable)

• Timer

• Clean blanket

Summary of the tasks: The goal of these tasks is to assess the 1) body function and structures (range of motion, muscle strength, muscle tone), and 2) activities and participation (balance, quality of life and goal-directed activities) for children with disabilities.

Assessment Protocol

Present data information sheet to the video camera. The data sheet contains the participant’s ID number, the visit date, and brief description as applicable. Each PT assessment will be performed once in the first visit over the course of 1 - 1.5 hour, depending on the child. The assessment will be divided into two categories:

Body Structure and Function

Range of motion (ROM): which is dependent on two components, joint ROM and muscle length. Joint ROM is the motion available at any single joint and it is influenced by bony

138 structure, ligaments and joint capsules. Muscle length refers to the ability of muscle to be lengthened across the joint (Reese & Bandy, 2010). ROM will be screened by first observing active ROM as participants model requested movements. If active ROM deficits are observed, clinical measurement of active and passive ROM using a goniometer will be performed for that joint as described by Reese and Bandy (2010) and recorded as listed in Table 13.

Muscle strength: which will be performed manually according to the D&W MMT protocol (Hislop et al., 2014) of the primary muscle groups. This assessment is graded on a six-point scale: 0 =no muscle contraction; 1 = small contraction on palpation or able to passively move through the partial range of motion; 2 = actively moves through full range of motion but without gravity; 3 = actively moves through full range of motion against gravity; 4 = actively moves through full range of motion with some manual resistance; and 5 = actively moves through full range of motion with a high level of resistance. This measurement had been used in children with neuromuscular disease (Kaya et al. 2015), spina bifida (Tan et al., 2016;) and Duchenne muscular dystrophy (Bozgeyik et al. 2016). Data will be recorded as listed in Table 1. Pinch strength and grip strength will be measured for all children using grip and pinch dynamometers, with a trial for learning and then taking the average and maximum across the next 3 trials.

Muscle Tone- Modified Ashworth Scale: which measures the resistance during passive soft-tissue stretching and has been used as a measure of muscle spasticity (Bohannon & Smith, 1987). The participant will be in a supine position and the score will be based on the following scale: 0 = no increase in muscle tone; 1 = slight increase in muscle tone, as indicated by a catch and release or by minimal resistance at the end of the ROM when the affected part(s) is moved into flexion or extension; 1+ = slight increase in muscle tone,

139 manifested by a catch, followed by minimal resistance through the remainder of the ROM; 2 = marked increase in muscle tone through most of ROM, but impaired area(s) easily moved; 3 = considerable increase in muscle tone and passive movement is difficult; 4 = impaired area(s) is rigid in flexion or extension (Bohannon & Smith, 1987). This assessment only will be performed if it will be observed any limitation in active/passive ROM or muscle strength. Data will be recorded as listed in Table 1.

Activities and Participation

Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): a questionnaire designed to measure the caregivers’ perspectives about ADL difficulty, level of assistance, general health and quality of life of children with disabilities aged between 5 and 18 years. To rate task difficulty level, scores ranges from 0 (not possible) to 6 (very easy). For the level of assistance, the scores ranges from 0 (total assistance required) to 3 (child completes task independently).

Pediatric Balance Scale (PBS): a modification of Berg’s Balance Scale, developed as a balance measure for school-age children with mild to moderate motor impairments. The PBS consists of 14 items, and each item is scored using a scale range of 0 – 4. Multiple trials are allowed on many of the items, with the score based on the child’s best performance (Franjoine et al. 2013). The assessor should try to complete the PBS during one visit.

140 Table 13 Range of motion (active – AROM, passive - PROM), Muscle strength (MS) and Muscle Tone (MT) Assessments for the right ® and left (L) sides:

AROM/ AROM/ MS MS MT MT ROM PROM PROM (R) (L) (R) (L) (reference) (R) (L)

0 - 180° Shoulder flexion 0 - 45°

Shoulder extension 0 - 180°

Shoulder abduction 0 - 40°

Shoulder adduction 0 - 90° Shoulder external rotation 0 - 90° Shoulder internal rotation Elbow flexion 0 - 145° 145 - 0°

Elbow extension 0 - 90°

Forearm supination 0 - 90°

Forearm pronation 0 - 90°

Wrist flexion 0 - 70°

Wrist extension 0 - 20°

Wrist abduction 0 - 45°

Wrist adduction 0 - 95°

Trunk flexion 0 - 35°

Trunk extension 0 - 35°

Trunk rotation 0 - 40°

Trunk inclination

141 0 - 125°

Hip flexion 0 - 10°

Hip extension 0 - 45°

Hip abduction 0 - 15°

Hip adduction 0 - 45°

Hip external rotation 0 - 45°

Hip internal rotation 0 - 140°

Knee flexion 140- 0°

Knee extension 0 - 20°

Dorsiflexion 0 - 45°

Plantar flexion 0 - 40°

Inversion 0 - 20°

Eversion

Grip Strength

Pinch Strength

142 Appendix E

DRESSING STUDY CODING PROTOCOL

Assessing User Independence During Dressing Task

Summary of the Task: The goal of this task is to assess the ability of children with motor and/or sensory impairment to dress and undress independently. This behavior is an important milestone that promotes independence, improves quality of life, and reduces caregiver burden. This assessment consists of two conditions: with the child putting on a garment (Dress, ON), and another one with the child taking off a garment (Dress, OFF). We will code behaviors using Datavyu. Use either P-WREX 1 or P-WREX 2 hard-drives to locate the video and a coding template for the visit that you plan to code (Other Projects-Dressing Study). Copy them into appropriate folders on your individual coding hard-drive. For each child (e.g., 01, 02…), there should be two folders – 1) Video; 2) DatavyuCodingFiles. The video should go to the first folder, and the template should go to the second folder.

Open Datavyu program.

*Note: If the Datavyu disk image does not appear on the desktop, search for “Datavyu” in Finder under the Applications tab. Then double-click on the file, and select the Datavyu leaf icon.

• Open the coding template for the child/visit you plan to code. File > Open > Coding #4 (your hard-drive) > ID Number (e.g., 001) > DressingStudy > 001_2017_04_15_DressingStudy.opf

• Save the file as a new file by adding “__coder’s initials” to the name of the file (i.e. “001_2017_04_15_DressingStudy.opf” is renamed as “001_2017_04_15_DressingStudy_LL.opf”)

143 *Note: Because the video files must be linked to each coding template, we cannot move the coding template file to another location and open it without breaking the links to the video. Therefore, we must perform coding on the external hard drive, and then save the coding on the server. If needed, we can reference the videos by moving the file back to the external hard drive.

• Make sure the template is correct. It should have an ID Matrix (1st column heading), Assessment Matrix, and Period Matrix already created. There should be cells already created under these Matrix headings. The ID cell should give the correct subject ID, subject initials, study phase (garment condition), visit number, etc. you want to work with. The Assessment and Period cells should have the assessment you want to code already identified. Also, there should be the following columns present in the file: ChildVisual, ChildManual, ChildVerbal, ParentManual, ParentVerbal, Orientation, Affect, Posture.

• iKey should be running already, but if you start coding and it is not working, click on the iKey icon on the dock, and choose “iKey Editor” option.

• Review the video you are working on: There should be one video for each file

• If you do not see the video that intersect with the red cursor in the Data Viewer Controller, click on the eye icon (next to the yellow lock icon) so that the eye is open.

• The red cursor in the DVC signifies the current point in time in the video. The horizontal video bands that intersect with the red cursor correspond to the videos that are playing at that point in time. These are the videos you want to have open while coding for that assessment.

• During coding you can organize the windows by:

• Making the video large enough to view

• Making the data viewer controller smaller by selecting “hide tracks”

144 • Making the coding template as small as possible

• Note: you can hide variables that you are not currently working on by selecting the variable you want to hide, and go to Spreadsheet > Hide Selected Variable. This can be reversed by selecting Spreadsheet > Show All Variables.

• You may find it useful to use the “weak/strong temporal ordering” feature under the Spreadsheet menu, in order to ensure that you are only working within your assessment.

• When you are ready to start coding:

• Click on the "Ankle" cell under the Period matrix, and then click “find” on the Data Viewer Controller (or “+” on the number pad).

• In the spreadsheet, be sure that the matrix heading that you are coding for (ie. “ChildVisual”) is highlighted before you begin to use the iKeys. Note: failure to do so will result in a cell being created in the wrong location! L

• Throughout the coding process, you may find it useful to use the number pad instead of the Controller: to play the video in a normal speed, press 8, to stop – press 5, to move forward with different speed – press 6, to move backward with different speed – press 4; you may want to press the pause button (or “2” on the number pad) at the beginning of each action; you can use the jog function (“1” and “3” on the number pad) to find the precise location of the beginning and end of the action.

• To mark the beginning of the action, press the hot keys for that action and release them, Datavyu will create a cell with the same start and end times. You will need to find the end point of the observed behavior and press “9” on the number pad. This will change the end time of the cell to the new current time.

• While coding, always make sure that none of the coded behaviors occur outside (before or after) the time boundaries (onset and offset) of the period you were coding.

145 PASS 4 (column 4): ChildVisual Click on the Matrix “ChildVisual”. You will perform this pass by first watching at full speed. When you notice the child’s gaze directed to the jeans or a person while playing the video in normal speed, it counts as "visual attention" and we want to identify whether the child is looking at the garment or at a person (all other glances directed to distant objects should not be coded). Your goal is to watch the video continuously through without needing to rewind and review multiple times. If you are not sure if the child is purposefully looking at an object, do not code it. Notes:

• If the child is looking at an object/person, breaks contact, and resumes contact with a break of less than 1 second, just count this event as 1 continuous holding event.

• Pants: Visual attention coded as "pants" occurs when the child is purposefully looking at his/her pants for more than 1 second.

• Mark the start of "pants" by pressing Command + v. It is important for us to know the duration of each event, so when the child is no longer looking at the pants, press “9” button on the number pad.

• Person: Visual attention coded as "person" occurs when the child is purposefully looking at other people for more than 1 second.

• Mark the start of "other" by pressing Command + n. It is important for us to know the duration of each event, so when the child is no longer looking at other objects, press “9” button on the number pad.

PASS 5 (column 5): ChildManual – ADD right and left foot too Click on the Matrix “ChildManual”. You will perform this pass by first watching at full speed. When you see periods of purposeful contact (greater than 1 second), we want accurate start and end times, so slow down at these times. To play at half-speed, tap

146 the forward pointing shuttle button on the Data View Controller until the play speed is “1/2” and press the “pause/play” button. Your goal is to watch the video continuously through without needing to rewind and review contacts multiple times. If you are not sure if the hand is making purposeful contact with the garment, do not code it. If a contact results from the caregiver touching the child or the garment, do not code it. *Note: pressing the “play” button on the DVC after setting the play speed at 1/2x will reset the play speed to normal. To avoid this, press the “pause/play” button on the DVC instead.

Notes:

• If the child is contacting the garment, breaks contact, and resumes contact with a break of less than 1 second, just count this event as 1 continuous holding event.

• A code of "hand" occurs when the child is manipulating/touching an object with his right hand only, left hand only, or both hands.

• Right Hand:

Mark the start of the right hand touching the garment by pressing Command + r. It is important for us to know the duration of each holding event, so when the hand is out of contact with the object/garment part, press “9” button on the number pad.

• Left Hand:

Mark the start of the left hand touching the garment by pressing Command + l. It is important for us to know the duration of each holding event, so when the hand is out of contact with an object/garment part, press “9” button on the number pad.

• Both Hands:

Mark the start both hands touching the garment by pressing Command + b. It is important for us to know the duration of each holding event, so when the hand is out of contact with the object/garment part, press “9” button on the number pad.

147 • Right Foot:

Mark the start of the right foot moving the garment by pressing Command + m. It is important for us to know the duration of each holding event, so when the hand is out of contact with the object/garment part, press “9” button on the number pad.

• Left Foot:

Mark the start of the left foot moving the garment by pressing Command + n. It is important for us to know the duration of each holding event, so when the hand is out of contact with the object/garment part, press “9” button on the number pad.

• Location: A code of "location" specifies the part of the body the child is touching with the right, left, or both hands. For the location, just type “ankle”, “knee”, “hip”, or “closure”. Note that you need to create a new behavior every time when either the holding hand or the location of the touch changes. For example, if the right hand moves from the hip to the knee, you will first create a cell “right hand, hip”, and then another cell “right hand, knee”.

PASS 6 (column 6): ChildVerbal

Click on the Matrix “ChildVerbal”. You will perform this pass by first watching at full speed. When you see periods of purposeful speech (distinct words), we want accurate start and end times. Try to code in normal speed, and slow down or rewind only to mark the exact time. Your goal is to watch the video continuously through without needing to rewind and review multiple times. If you are not sure if the child is making meaningful speech, do not count it. If speech comes from the caregiver, do not count it.

• Help:

148 Mark the start of a period if/when the child asks for help by pressing Command + h. Press “9” button on the number pad to end the event.

• Positive Emotion:

Mark the start of a period when the child verbally expresses positive emotion by pressing Command + p. Press “9” button on the number pad to end the event.

• Neutral Emotion:

Mark the start of a period when the child verbally expresses neutral emotion by pressing Command + n. Press “9” button on the number pad to end the event.

• Negative Emotion:

Mark the start of a period when the child verbally expresses negative emotion by pressing Command + s. Press “9” button on the number pad to end the event.

PASS 7 (column 7): ParentManual

Click on the Matrix “ParentManual”. You will perform this pass by first watching at full speed. When you see periods of physical assistance from the caregiver, we want accurate start and end times, so slow down to half speed at these times. Try to code in normal speed, and slow down or rewind only to mark the exact time. Your goal is to watch the video continuously through without needing to rewind and review multiple times. If you are not sure if the caregiver is providing assistance, do not code it.

• Low Assistance:

A code of "low" occurs when the caregiver providing some help with the task (verbal or minimal physical help), but the child is doing most of the work. Mark the start of a period of low assistance by pressing Command + q. Press “9” button on the number pad to end the event.

• Medium Assistance:

149 A code of "medium" occurs when the caregiver & child are equally participating in the task. Mark the start of a period of medium assistance by pressing Command + m. Press “9” button on the number pad to end the event.

• High Assistance:

A code of "high" occurs when the caregiver providing most or total assistance with the task. Mark the start of a period of high assistance by pressing Command + h. Press “9” button on the number pad to end the event.

PASS 8 (column 8): ParentVerbal

Click on the Matrix “ParentVerbal”. You will perform this pass by first watching at full speed. When you see periods of purposeful speech (directed to the child), we want accurate start and end times, so slow down to half speed at these times. Try to code in normal speed, and slow down or rewind only to mark the exact time. Your goal is to watch the video continuously through without needing to rewind and review multiple times. If you are not sure if the caregiver is talking to the child, do not code it.

• Instruct:

A code of "instruct" occurs when the caregiver provides verbal instructions, prompts, or any other speech that provides information to the child about the task. Mark the start of a period when the right hand is in the area above the infant’s shoulders by pressing Command + i. Press “9” button on the number pad to end the event. The event could end because the hand moves out of this area.

• Encourage:

A code of "encourage" occurs when the caregiver provides verbal encouragement, support, or any other speech that provides praise to the child. Mark the start of a period when the right hand is in the area at the level above the infant’s navel and at or below the infant’s shoulders by pressing Command + e. Press “9” button on the number pad to end the event. The event could end because the hand moves out of this area.

150

PASS 9 (column 9): Orientation

Click on the Matrix “Orientation”. You will perform this pass by first watching at full speed. When you see periods of the garment getting twisted without correction or put on incorrectly (inside out, backwards, etc.) we want accurate start and end times, so slow down to half speed at these times. Try to code in normal speed, and slow down or rewind only to mark the exact time. Your goal is to watch the video continuously through without needing to rewind and review multiple times. If you are not sure if the garment is incorrect, do not code it.

• Correct:

Mark the start of a period when the child is putting on/taking off the garment with the correct orientation by pressing Command + a. Press “9” button on the number pad to end the event. The event could end because the hand moves out of this area.

• Incorrect:

Mark the start of a period when the child is putting on the garment incorrectly, or not fixing a twisted garment by pressing Command + f. Press “9” button on the number pad to end the event. The event could end because the hand moves out of this area.

PASS 10 (column 10): Affect

Click on the Matrix “Affect”. You will perform this pass in real time to get a general idea for child's facial expression; you might slow down to mark more precise timing of the looking behavior. If you are not sure of the child's facial expression, do not count it. Please code each period (ankle, knee, hip, closure) separately. Determine the overall facial expression during the given period.

151 • Interest: To determine if the child is expressing interest,

Facial Expression – Forehead may be smooth or slightly furrowed. Brows may be lightly pulled inward. Eyes are focused on the object.

Verbal Cues – animated and louder than usual

Posture – body movement guided by visual attention

Hold Control + v down whenever the child starts looking interested in the task. Press “9” button on the number pad to end the event.

• Happy: To determine if the child is expressing happiness,

Facial Expression – smiling, eyes narrow, brows raised

Verbal Cues – voice is light, higher or louder pitch, laughing, humming

Posture – relaxed, could be active, moving arms, clapping, etc.

Hold Control + h down whenever the child starts looking happy with the task. Press “9” button on the number pad to end the event.

• Sad: To determine if the child is expressing sadness,

Facial Expression – lips curled down, pouting

Verbal Cues – lower volume, voice drops off, crying or whining

Posture – head drops to front or side, body slacks, slow movements

Hold Control + s down whenever the child starts looking sad during the task. Press “9” button on the number pad to end the event.

• Angry/frustrated: To determine if the child is expressing anger,

Facial Expression – brows down and inward, eyes narrow, jaw clenched, lips tight

Verbal Cues – harsh tones, higher volume, or low growl

Posture – chin and chest out, protesting, strong movement

Hold Control + g down whenever the child starts looking angry or frustrated during the task. Press “9” button on the number pad to end the event.

152 • Neutral: To determine if the child is expressing a neutral affect,

There will be no signs of facial, verbal or postural cues of emotion.

Hold Control + j down whenever the child starts looking interested in the task. Press “9” button on the number pad to end the event.

PASS 11 (column 11): Posture

Click on the Matrix “Posture”. You will perform this pass by first watching at full speed. Try to code in normal speed, and slow down or rewind only to mark the exact time. Your goal is to watch the video continuously through without needing to rewind and review contacts multiple times. You will be identifying the child's postures over the entire assessment period. If you are not sure of the posture, do not code it.

• Position

Stand/supported: Mark the start of a period if/when the child is standing up with physical support by pressing Command + r. Press “9” button on the number pad to end the event.

Stand/unsupported: Mark the start of a period if/when the child is standing up without physical support of any kind by pressing Command + t. Press “9” button on the number pad to end the event.

Sit/supported: Mark the start of a period if/when the child is sitting down with physical support by pressing Command + r. Press “9” button on the number pad to end the event.

Sit/unsupported: Mark the start of a period if/when the child is sitting down independently by pressing Command + t. Press “9” button on the number pad to end the event.

Lying down: Mark the start of a period if/when the child is lying down by pressing Command + d. Press “9” button on the number pad to end the event.

153 GENERAL NOTES:

* For all of the actions you are coding, just look for each action in its own pass regardless of what other actions belonging to other Matrixes are occurring. We will look at these behaviors individually in our coding passes. * Datavyu is case sensitive so make sure you follow all guidelines here for capital letters, lower case letters, spaces, and punctuation marks.

CODING DATA REVIEW:

When you have completed your coding because you finished a variable, need to leave for the day, or so forth, review your coding to make sure that none of your behaviors occurred outside (before or after) the time boundaries (onset and offset) of the period you were coding.

It is easiest to perform this in temporal view. If you moved out of temporal view, go to spreadsheet > strong temporal ordering. Then go through your data one column at a time. First make sure all of your events are within the period times. There should be no times where we code events when the infant is not within a period. You can get each data column next to the period column for ease of viewing by hiding any columns in between you have already viewed. Do this by selecting (clicking on) the columns you want to hide (press shift and click to select more than 1 column), going to Spreadsheet > Hide Selected

Variables. When you are finished your check, go to Spreadsheet > Variable List. You will see a checkmark next to the variables you have not hidden. Select (click) these variables and go to Spreadsheet > Show Spreadsheet to make them visible in your spreadsheet again. Or select Show All Variables from the pull-down menu.

154 If the event was completely outside of any coding period, delete its cell (Spreadsheet – Delete cell). If the event started before a coding period started, change its start time to the start time of the period. If the event ended after a coding period ended, change its end time to the end time of the period.

Also, double check that all periods for the assessment start at or after and end at or before the assessment start and end times. And double check that the assessment(s) coded start at or after and end at or before the ID cell start and end times. If you find errors with these, you must change all of the copies of the coding template for that visit.

155 Appendix F

PARTICIPANT WEAR LOG

Type of Week 1 Week 2 Week 3 Jeans T T T M T W F S S M T W F S S M T W F S S R R R Univers

al Pair Amount of Time Worn Universal

Custom

Pair Amount of Time Worn Custom

Comments/Feedback:

Comments

156 Appendix G

IRB APPROVALS

157

RESEARCH OFFICE 210 Hullihen Hall University of Delaware Newark, Delaware 19716-1551 Ph: 302/831-2136 Fax: 302/831-2828

DATE: May 2, 2016

TO: Martha Hall, MS FROM: University of Delaware IRB

STUDY TITLE: [901806-1] Challenges with Daily Activities for Individuals with Motor or Sensory Impairment

SUBMISSION TYPE: New Project

ACTION: DETERMINATION OF EXEMPT STATUS DECISION DATE: May 2, 2016

REVIEW CATEGORY: Exemption category # (2)

Thank you for your submission of New Project materials for this research study. The University of Delaware IRB has determined this project is EXEMPT FROM IRB REVIEW according to federal regulations.

We will put a copy of this correspondence on file in our office. Please remember to notify us if you make any substantial changes to the project.

If you have any questions, please contact Nicole Farnese-McFarlane at (302) 831-1119 or [email protected]. Please include your study title and reference number in all correspondence with this office.

- 1 - Generated on IRBNet

RESEARCH OFFICE 210 Hullihen Hall University of Delaware Newark, Delaware 19716-1551 Ph: 302/831-2136 Fax: 302/831-2828

DATE: September 7, 2018

TO: Martha Hall, MS FROM: University of Delaware IRB

STUDY TITLE: [906767-3] Interviewing Individuals with Motor or Sensory Impairment About Challenges with Daily Activities

SUBMISSION TYPE: Continuing Review/Progress Report

ACTION: APPROVED APPROVAL DATE: September 7, 2018 EXPIRATION DATE: September 25, 2019 REVIEW TYPE: Expedited Review

REVIEW CATEGORY: Expedited review category # (6,7)

Thank you for your submission of Continuing Review/Progress Report materials for this research study. The University of Delaware IRB has APPROVED your submission. This approval is based on an appropriate risk/benefit ratio and a study design wherein the risks have been minimized. All research must be conducted in accordance with this approved submission.

This submission has received Expedited Review based on the applicable federal regulation.

Please remember that informed consent is a process beginning with a description of the study and insurance of participant understanding followed by a signed consent form. Informed consent must continue throughout the study via a dialogue between the researcher and research participant. Federal regulations require each participant receive a copy of the signed consent document.

Please note that any revision to previously approved materials must be approved by this office prior to initiation. Please use the appropriate revision forms for this procedure.

All SERIOUS and UNEXPECTED adverse events must be reported to this office. Please use the appropriate adverse event forms for this procedure. All sponsor reporting requirements should also be followed.

Please report all NON-COMPLIANCE issues or COMPLAINTS regarding this study to this office.

Please note that all research records must be retained for a minimum of three years.

- 1 - Generated on IRBNet

Based on the risks, this project requires Continuing Review by this office on an annual basis. Please use the appropriate renewal forms for this procedure.

If you have any questions, please contact Nicole Farnese-McFarlane at (302) 831-1119 or [email protected]. Please include your study title and reference number in all correspondence with this office.

- 2 - Generated on IRBNet

RESEARCH OFFICE 210 Hullihen Hall University of Delaware Newark, Delaware 19716-1551 Ph: 302/831-2136 Fax: 302/831-2828

DATE: February 2, 2018

TO: Michele Lobo, PT, PhD FROM: University of Delaware IRB

STUDY TITLE: [704060-5] Clothing Design for Individuals with Adaptive Clothing Needs

SUBMISSION TYPE: Continuing Review/Progress Report

ACTION: APPROVED APPROVAL DATE: February 2, 2018 EXPIRATION DATE: February 22, 2019 REVIEW TYPE: Expedited Review

REVIEW CATEGORY: Expedited review category # (4,7)

This submission has received Expedited Review based on the applicable federal regulation.

Please note that any revision to previously approved materials must be approved by this office prior to initiation. Please use the appropriate revision forms for this procedure.

Please report all NON-COMPLIANCE issues or COMPLAINTS regarding this study to this office.

Please note that all research records must be retained for a minimum of three years.

Based on the risks, this project requires Continuing Review by this office on an annual basis. Please use the appropriate renewal forms for this procedure.

- 1 - Generated on IRBNet

If you have any questions, please contact Nicole Farnese-McFarlane at (302) 831-1119 or [email protected]. Please include your study title and reference number in all correspondence with this office.

- 2 - Generated on IRBNet