INTRODUCTION

Parents with physical disabilities experience a unique set of barriers in fulfilling their parental role [1]. ​Some of these barriers include lack of access to accessible equipment [2]​; threats of court protection resulting in removal of children [1] and social stigma which results in biases regarding the parenting ability of people with disabilities [Personal communication Ashley Bohn].

A report from 2012 stated that there were 4.1 million parents with a disability that had a child under the age of 18 living with them at their residence. ​Another survey from 2008-2009 found that approximately 9.1% of children in the United States had parents with a disability and the same survey also found that family income for parents with disabilities to be $35,000 compared to $65,000 for parents without disabilities [3] .​

In order to assume the role of parent to a new born there are many steps a parent must go through, one being getting the appropriate equipment to care for the child’s need​. For the purposes of this research we will focus on obtaining a crib. ​ The PediaLift is a wheelchair-accessible crib specifically designed for parents with disabilities.​ It was designed specifically for wheelchair users because of the access issues they have caring for a child in a typical crib. Over 80 parents with disabilities have tried to obtain this crib using their medical insurance. However most insurance claims have been denied and to date only 12 people have been able to obtain coverage for this device which can support them in the role of parent (Personal communication with Clayton Smeltz). There are a myriad of reasons insurers deny claims for this product but the one we will focus on here is the lack of research documenting the efficacy of the device. This issue is certainly not new in the field of AT and the need for outcomes studies documenting the effectiveness of AT is an ongoing need in our field [4].  

RESEARCH PURPOSE AND QUESTIONS

The purpose of this research is to study the satisfaction with and functional benefits of using the PediaLift for parents with disabilities. Specifically our research questions are: To what extent are PediaLift users satisfied with their assistive device and related services experiences? And to what extent does the PediaLift impact satisfaction with perceived performance?​

METHODOLOGY

The Ithaca College IRB approved this research. We used a mixed-methods, non-experimental retrospective exploratory research design to investigate our questions [5]. Our survey tools include the QUEST 2.0 [6] and the Canadian Occupational Performance Measure (COPM) [7].  The Quest was specifically designed to measure user satisfaction with AT devices and services. The COPM has been used in AT related outcomes research in prior studies. Both tools are considered to be reliable and valid outcome measures. A convenience sample which included the total number of people who own the Pedialift were recruited for our study Twelve individuals were given the opportunity to participate in the QUEST 2.0 survey & the optional COPM semi-structured interview. Descriptive statistics were used to analyze the data from both the QUEST 2.0 survey and the COPM. ​Data from the COPM interviews were analyzed using qualitative thematic review ​

RESULTS ​

We received 6 completed QUEST 2.0 surveys (50% response rate) ​. Of the 6 people who completed surveys, 3 agreed to participate in the semi-structured COPM interview​. The QUEST 2.0 survey is analyzed in three scoring categories: Device, Service, and Total scores​. Scores use a 1-5 scale with: 1 being the least satisfied, and 5 being the most satisfied​

See Table 1 for Quest total scores

Table 1.

Score Category	Mean	Median	SD
Device	4.79	5	.50
Services	4.75	5	.68
Total	4.76	5	.56

Participants who completed the QUEST 2.0 marked the 3 most important items that were included under the construct of satisfaction. They ​were: ​ 1) safety marked by 5 of 6 participants ​2) effectiveness marked by 5 of 6 participants​ and 3) ease of use marked by 4of 6 participants​. In ranking safety, effectiveness, and ease of use, all participants indicated they were 'very satisfied' except for one participant that chose 'quite satisfied' for ease of use​. Only one COPM interview yielded usable pre and post intervention scores which revealed clinically significant changes. A clinically significant change in the COPM score is a difference in 2 points with scores ranging from 1 ( not satisfied at all ) to 10 (being extremely satisfied)  The changes were seen in the following activities 1) being able to put my child to bed (pre Pedialift 5; post Pedialift 10);  2) being able to reach into the crib ((pre Pedialift 5; post Pedialift 10); and 3) getting my child out of the crib (pre Pedialift 5; post Pedialift 10).

Qualitative Data from the COPM interviews revealed eight themes including 1) Satisfaction with the PediaLift

2) Independence​ 3) Cost/funding​ 4) Timeline of getting the PediaLift​ 5) Versatility of the crib​ 5) Attitudes, Perceptions, and Competence of parents​ 6) Other baby equipment parents used​ 7) Safety Concerns​ and 8) confusion with COPM questions. ​

Examples of quotes supporting each of the themes are shown in Table 2.

Table 2

Theme	Supporting qualitative statements
Satisfaction with the Pedialift	“I think when you don’t have something like the PediaLift Crib, you don’t realize what a asset a piece of equipment like that is unless you’re without it” “I wish everyone could have one. It really is like a life-changer as a parent with a disability. I mean it was the best invention” ​
Independence​	"I had visions of my baby calling me from a crib when he got up and I couldn't get him he's got his hands up in the air going mama, mama , mama and I can't get him up that broke my heart”​ "I worried about getting him off the floor"​ “The PediaLift allowed independence ​“
Cost/funding and Timeline of getting the Pedialift	“terrible process because my insurance first denied it and said we had to fight it there and then they approved it but it was like they were still only gonna approve small portion of it and the amount we were going to have to pay for was ridiculous…” ​ Funding caused delays in receiving the Pedialift for all participants​
Versatility of the crib	“Used it like an "elevator" to have the baby lowered to the floor”​ “Used it as a changing table​” Play area or play pen​ Safe area for child to be in while parent needed to do housework
Attitudes, Perceptions, and Competence of parents	Natural feelings of nervousness that come with being a new parent, no matter the ability level ​ Initial family members skepticism in their ability to parent Before receiving the PediaLift, self-doubt in ability to safely transfer child Feelings that built-environment created barriers to parenting competence, not inherent components of their disability.
Other baby equipment parents used before they got the Pedialift	Pack n Play – this is not a sustainable solution Bassinet- not sustainable for a growing child Dock a Tot
Safety Concerns	"There were so many times where I’d reach down into that Pack N Play thinking, please don’t let me drop him, you know”​ “the crib is a good option... I can block the only opening he has.” ​  “it made the floor come up to whatever level I wanted”​ ​
Confusion with COPM questions	When asking questions from the COPM semi structured interview about clients ability to perform everyday tasks before and after they got the Pedialift, remembering their performance rather than how the Pedialift impacted the child was confusing for participants

DISCUSSION

All of the participants were satisfied with both the Pedialift device and services they received. Findings supported the efficacy of the device and the three most important areas identified by participants in this study regarding the PediaLift were safety, effectiveness, and ease of use. The device enabled them to feel competent as parents and participate safely in taking care of their baby. The device also supported their independence in being able to participate in the role of parent. The Pedialift provided flexibility to serve as other baby care products such as changing tables and safe playing areas. Participants reported having difficulty getting the device funded and had to wait months after their baby came home before the device came due to funding delays. Participants stated that unless they could get the device funded through their insurance as an assistive technology device to engage in the role of parenting, they would not be able to afford it. This made new parents use other crib options which they felt were not safe and were unsustainable for growing babies. Consistent with the literature these funding barriers are not uncommon when trying to obtain new and novel AT products.. Additionally, the stigma that parents with disabilities experience in terms of their competence to be parents was supported in this study.

LIMITATIONS OF THE STUDY

While we had a 50% return rate on our survey the overall sample size of the study is small, and the findings of this study cannot be generalized. Findings are only representative of those who participated in the study. The COPM measure while providing a systematic theory-based framework for our interviews, did not provide useful outcome scores due to confusion among the participants about who the questions were focused on.

​CONCLUSION AND FUTURE RESEARCH IMPLICATIONS

This research supports the user’s satisfaction with both the Pedialift device and services as an effective piece of AT to support their role as caregivers of their babies. This is a role, which is identified under the activities and participation category of the ICF in multiple areas and is one of the basic roles in which most people participate. Insuring that parents with disabilities are supported with the assistive technology that they need to participate in the parent child role is critical. More research regarding the effectiveness of AT to support this role is certainly needed. Additionally, participation in this most meaningful role is a human right.