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ADAPTIVE BABYCARE EQUIPMENT FOR PARENTS WITH PHYSICAL DISABILITIES

Christi Tuleja MS, OTR
Though The Looking Glass
2198 6th St. Suite 100
Berkeley, Ca. 94705
510-848-1112 ext. 119
Fax 510-848-4445
Internet- Christi@lookingglass.org
Home page- WWW.lookingglass.org

Web Posted on: December 12, 1997


Assistive technology has enormous potential to provide options for parents with physical disabilities. For some parents it can make the difference between being, as one parent put it, "just an observer of my child's care- to being the primary caregiver". For other parents assistive technology can allow them to care for their baby with more ease, less effort or less pain. In both situations adaptive equipment can provide a milieu for the parent child relationship to flourish. In-depth work is occurring at Through The Looking Glass (TLG) related to adaptive babycare equipment intervention and its impact. I will present a brief background on TLG so that parents and professional working with parents with disabilities and their families can utilize us as a resource. Then I will provide an overview of our fabrication and assessment process. Within this discussion pertinent research findings will be reviewed and a variety of babycare equipment will be shown.

TLG, a nonprofit organization, is a Research and Training Center for Families of Adults with Disabilities funded by the National Institute on Disability Rehabilitation Research. Our center has a clearinghouse of resources and information about parenting with a disability including a 800-number. We have a number of research projects taking place related to parenting with disability, including a teamwork survey for couples where one parent or both are disabled. Another current project is a diapering study examining the relationship between parents'level of task demand (which is affected by the use of adaptive equipment)and interactional patterns with their children.

Since there exists only one commercially available adapted crib (i.e., Baby Tenda), most babycare equipment needs continue to be met through the ingenuity of parents. Parents have been and continue to be exceedingly resourceful and clever at getting these needs met. It appears that the daily problem solving parents already do in order to meet the inadequacies of their environment carryover to babycare solutions. However resourceful a parent may be, our experience has been that they all would desire the option of having babycare equipment available to them either commercially or through a lending source. Our work is not to negate their solutions but to build upon these in providing alternatives.

To create more options for parents with physical disabilities we have been designing and fabricating equipment for over 6 years. We have begun to see patterns in the types of babycare equipment needed for various individuals' functional abilities. For example, parents who use a manual wheelchairs and have good arm and hand use may need the following equipment: an accessible crib and diapering surface and a way to transport their child on their lap while pushing their wheelchair. All other in home babycare tasks, with the exception of bathing, which many parents choose to allow someone else to do, can usually be managed by such a parent.

These patterns allow us to better predict some of the basic equipment needs parents may have and allow timely intervention. The timely nature of equipment is essential because both changes in the child and the parent drive the equipment needs and designs. In the child, both developmental (e.g., sitting up) and growth (e.g., increased weight) change, can present the parent with new or increased physical demands. Therefore, best practice would suggest equipment is introduced to the parent and he or she is allowed to become efficient using it before the child's next developmental skill or growth occurs. If a piece of equipment cannot be developed in a timely fashion, it may no longer be needed by the parent because the child has already outgrown it. Similarly, parents who experience a temporary decrease in their abilities due, for example, to an exacerbation, need the timely development of equipment for the equipment to be useful.

For the reasons stated above, we have created a babycare equipment library to serve our parents' transitory babycare equipment needs. This allows us to reuse equipment and more quickly serve parents. The occupational therapists pull equipment from the library and assess in the home environment if it is a match with the parent's functional abilities, making modifications if needed. By the age of two to three, adaptive equipment needs are minimal as children developmentally do more for themselves. Until this age frequent contact with families, through phone calls and home visits, is crucial for attaining parents' feedback on equipment, checking for equipment safety and planning for the child's upcoming changes.

Not all of the equipment we provide for parents and have in our library is fabricated by us. In fact, we take advantage of commercial babycare equipment as much as possible because it is more economical and immediately available. It's not unusual for a commercial piece of equipment to require additional modifications to be most effective for parents. Also, we may use equipment on the market in different ways from its originally intended purpose. For example; the "boby" is designed for supporting a child while sitting on the floor and with modifications we have used it to create higher and deeper laps for parent to carry, interact with and nurse their newborns on. For some parents this has proven to be more effective than the nursing pillows on the market.

When designing new equipment it's important to remember that complex designs do not necessarily equate with more function on the part of the parent. Some of the simplest equipment or concepts, such as placing loops made out of tape onto diapers tabs to allow for easier securing, can make an enormous difference for a parent. We strive for "universal design" when modifying equipment or creating equipment. That is a design which requires the least amount of function or skills on the part of the parent. This also allows us to use one piece of equipment or concept across a wider range of functional abilities. This becomes particularly challenging when we create latches for safety gates, drawers, safety straps, and so forth, for parents who do not have use of their hands. It has been difficult to design a latch or closure which is easy for a parent but not for the child.

Due to the variety of equipment and materials needed, no one type of business or technical skill has met all our fabrication needs. Rehabilitation engineers, woodworkers, handy persons, sail makers, wheelchair repair shops, welders, seamstresses and shoe repair shops are some examples of the range and type of resources necessary. It is not unusual for a newly designed piece of equipment to be taken to two or three different settings before its features are completed. It has been an ongoing challenge for us to get some of our fabricators, who have busy schedules themselves, to adhere to tour fabrication timelines. This has sometimes made it difficult for us to get the equipment to parent when needed. For example, wheelchair repair shops, though they find the work intriguing, do not seem to place as much urgency on the completion of babycare equipment as other adult equipment repair work. A good working relationship and an explanation of the need for the timely nature of babycare equipment and the difference it can make for the parents seems to aid in getting equipment completed on time.

Which babycare activities should one focus on when starting to work with a mother/father and his or her newborn, or as a parent begins to problem solve potential issues before a baby arrives? Our research has shown that there are core activities that are performed numerous times during and between baby care tasks that appear to be functionally central for parents. We refer to these activities as "transitional tasks". Transitional tasks are such things as transferring from one surface to another, positional changes (moving a child on the same surface), holding and carrying/ moving. We have designed equipment such as the "babycare tray" which minimizes transitional tasks for parent's during feeding, diapering,and dressing. It is important to note that some parents choose to allow someone else to do transitional tasks yet remain central in their child's care. Therefore, one needs to elicit parents goals for the equipment at the outset of intervention.

Poignant findings from our first adaptive equipment project (Through The Looking Glass, 1995) illustrates future the need to attain parent desires for equipment outcomes. The project set out to capture the impact of the equipment from two perspective: the parents view and the occupational therapist view. The team videotaped parent's doing babycare activities before and after adaptive equipment intervention. The occupational therapist's via videotapes and developed scales assessed the physical impact of the equipment for parents. The parent's perspective was attained through structured interview, including self ratings. In analyzing the parent interview data some particularly surprising variables did not improve for all parents. These variables were: amount of assistance, number of babycare tasks performed and frequency of doing the babycare tasks. We were assuming three things about the parents' goals for the equipment:

  • 1) that all of our parents wanted to do babycare task independently or without any assistance;
  • 2)that they wanted to do all babycare task; and
  • 3) that parents wanted to do babycare tasks as frequently as needed.

One parent, for example, only wanted to diaper during the day when no other assistance was available. When her husband comes home at night from work it was his job to take over diapering. Our assumptions about parents' desired outcomes from equipment intervention were too simple and did not capture the subtleties of babycare roles and work divisions within the family. We are presently field-testing a revised parent interview which encompasses more of these dynamics.

In addition, we have been developing an occupational therapy observation tool in order to demonstrate the physical impact of babycare equipment intervention. We hope to share both the parent interview and observational tool at our upcoming international conference on "Parenting with a Disability" in Oakland California this fall. There will be a day long workshop on adaptive babycare equipment intervention and it will include in-depth information about: TLG's model of intervention, design and fabrication guidelines, avoiding pitfalls when introducing equipment into the home,and assessment process for demonstrating impact.

Our experience has shown that effective babycare intervention and accurate assessment of impact is influenced by a phenomenon we call "visual history". Visual history is a repertoire of images of the varied ways parents with physical disabilities move and handle their children. The combination of our Occupational Therapy (OT) team which is comprised of, myself, Judi Rogers, a parent with a disability who has been involved in all of the equipment projects, and Kris Vensand (who within the last year) was added to the project, have illuminated this phenomenon. There were a number of incidents where the newer OT's perceptions(ratings)of the parent's level of difficulty were higher or harder than the more experienced OT's. Apparently, the awkward functional movements were normalized by the OT's with larger repertoires parent/child of babycare observations. The OT with a limited visual history seemed to underestimate the parent's physical abilities by focusing more on its awkwardness or differences. Awkward types of functional movements, or movement that are perceived different from nondisabled individual's movements, can be interpreted by the untrained eye as unsafe. The parents participating in our research (Through The Looking Glass, 1995)have not placed their children in unsafe circumstances; in fact they put themselves at risk for secondary disability or injury before placing their children in potentially unsafe situations. Therefore, it becomes critical for practitioners to gain a visual history in order to better assess parents' competencies and support their abilities.

Occupational therapists, such as myself, have the opportunity at TLG, to work closely with psychologists and to work with families in their homes for extended periods, sometimes several years. This experience has provided rich information about how adaptive equipment can have a rippling effect on everyone in the family who has been caring for the child. The equipment can have a relatively rapid effect on a parents functioning, which may alter the balance of roles or surface relationship issues not initially identified by the family or noted by the practitioner. For example: an extended family member, such as a grandmother, may have been coming in daily to dress and bathe the child. The adaptive equipment such as bathing table, and accessible dressing surface, may allow the parent to perform those tasks, thereby eliminating the need for the grandmother in that capacity. Salient psychosocial variables, such as the parent's ethnic and disability culture as well as family dynamics, need to be considered when designing and introducing adaptive equipment.

It is TLG's aim that the knowledge gained through fabricating, field-testing and studying the impact of adaptive babycare technology, will provide a basis for the development of commercial adaptive equipment, thereby creating more availability for parents across the country. In addition, it is hoped that the knowledge will provide best practice guidelines for occupational therapists, social workers and other professionals who are working with parents with disabilities. Finally, we will continue to use the information to encourage federal and state policy changes necessary to support parents with disabilities.

Through The Looking Glass.(1995). Field Initiated Research: "Developing adaptive equipment and adaptive techniques for physically disabled parents and their babies within the context of psychosocial services (1991-1994).(Grant #H133G10146:Final Report submitted to National Institute on Disability and Rehabilitation Research). Berkeley,California: Through The Looking Glass.