Cieraad, Irene - Researching Rehabilitation from a User Perspective

Irene Cleraad

The A i m s of the Research Seminar

RESEARCHING REHABILITATIOfI F A USER PERSPECTIVE

Designing a rehabilitation clinic is a very complex assignment for any architect, and even more so for students of architecture.The main objective of the Research Seminar that runs parallel to each graduation design studio for the A r c h i t e c t u r e of the Interior chair is to help students to come to grips w/ith the complexities of an assignment by focusing on the needs of the various users of the building in question.

In the case of a rehabilitation clinic, the main user groups not only include two categories of patients, the residential group of inpatients and the visiting group of outpatients, but also a wide variety of clinical staff, ranging from medical specialists and various therapists to the nursing staff in relation to the inpatient group. Especially for the latter patient group, who on average spend more than half a year in the clinic, visiting relatives and friends are an important secondary user group.Their needs also have to be taken into account, as research indicates that their support and involvement greatly contributes to speedy rehabilitation.

A second objective of the Research Seminar is to create an awareness of the social and cultural history of a facility and its users, which also makes students more aware of recent and possible future trends.' From a historical perspective, the rehabilitation clinic is a t w e n tieth-century scion in the age-old pedigree of hospital architecture. A s such, it bears a resemblance to its immediate p r e c u r s o r s - t h e sanatorium and the psychiatric clinic - both often situated in the remote woods. However, among the many emancipation movements of the 1970s, the 'invalid minority' claimed their rightful position in Dutch society, and for that matter a more prominent role in urban life.Their emancipation was not only reflected in a more euphemistic labeling of their condition as 'disabled', but also legalised, with the mandatory provision of wheelchair access to public buildings, wheelchair accessible toilets and special parking places.

The prominent urban location of rehabilitation clinics built in the late twentieth century, such as the Rijndam Clinic at Museumpark in Rotterdam and the Reade-Overtoom clinic in A m s t e r d a m , which were the respective design locations for the 2012 and 2013 graduation s t u -

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Fig.

1: Exterior

OLVG h o s p i t a l

Amsterdam; Ke Xu, 2013

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2:

OLVG h o s p i t a l

Amsterdam; Ke Xu, 2013

Interior

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Lay o u t Deventer h o s p i t a l ;

Fig.

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Entrance h a l l

Ke Xu, 2013

Deventer h o s p i t a l ;

Ke Xu, 2013

dios, mirrored tlie progressive social emancipation of wheelchair users in placing the emphasis on accessibility.

This also enabled the transition of rehabilitation clinics from exclusive inpatient facilities in the woods into combined facilities for both in and outpatients in an urban setting.The transition in its turn warranted the provision of waiting areas for outpatients, a spatial development which is even more visible in today's hospital architecture, where ground floors have been turned into waiting areas which have been modelled, for example, on the urban fabric of a main street with squares as waiting areas, as can be found in the OLVG hospital in A m s t e r d a m (figure 1-2), or like an airport with various gates, as occurs in the new Deventer hospital (figure 3-4).

The poorly designed waiting spaces in most rehabilitation centres, in combination with the vulnerable position of the waiting patients, inspired many students to make improvements to the outpatient department.^ W i t h growing numbers of outpatients, rehabilitation centres have become vital care facilities in the urban medical infrastructure.

Rehabilitation: A Unique Combination of Facilities

F i g . 5 - 6 : Two d i f f e r e n t views on f a c i l i t i e s b i l i t a t i o n c e n t r e s ; J o o s t H a r t e v e l d , 2012

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In contrast to the exclusive medical care of a hospital, the present-day rehabilitation centre provides a unique combination of medical care and physical, psychological and social t r a i n ing. A s such, it requires facilities which were hitherto unknown in hospital architecture.The standard requirements of a rehabilitation clinic not only include several physiotherapy rooms with training equipment, a sports hall and a swimming pool with an adjustable floor, but also a test kitchen and model apartment used to train and prepare patients and their families for the patient's return home. A m o n g the additional facilities in a rehabilitation clinic, one finds workshop spaces, not only for the manufacture of tailor-made prostheses and adjusted wheelchairs, but also for training patients, such as a carpentry workshop.This type of occupational therapy was and still is mostly directed at providing patients with a meaningful hobby.

More recently, however, the goals of the

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emancipation of people with disabilities has shifted towards their integration into the regular workforce or reintegration into their previous jobs. Rehabilitation clinics, such as Reade in A m s t e r d a m , have engaged special occupational therapists who facilitate this reintegration of patients.^ They visit the patient's future or former work environment, explain to the employerthe patient's limitations and discuss the necessary adaptations. By doing so the therapists extend the clinic into the more public realm of the workplace. Dutch employers are willing to adapt the work environment of disabled employees, as they are penalised if they do not employ a quota of people with physical or mental disabilities. One of the first rehabilitation centres to respond to this new development in an architectural way is Beatrixoord in Haren, an outpost of the Academic Hospital in Groningen, where the entrance hall will be transformed into a 'participation square', with information desks for employment opportunities and sport clubs.

Prominent facilities in newly built rehabilitation centres, such as a theatre space to stage performances by patients, as found in Groot Klimmendaal, tend to put patients in the spotlight while doing sport or playing music.The emphasis on patient visibility seems to be the next step in the social emancipation of people with what are now referred to as physical limitations. In line with the societal preoccupation with movement, fitness and an athletic body, one of the students designed an open sports hall in the atrium of the clinic, where patients and visitors could observe other patients t r a i n ing in some form of wheelchair sport."

In the social design approach of the A r c h i tecture of the Interior chair, as initiated by our former professor,Tony Fretton, students are always encouraged to address the requirements not only of the users of the building but also the general public and, as such, contribute to urban public life, whether internal or external to the building.Therefore, the design assignment for a rehabilitation clinic in the urban settings of Rotterdam and A m s t e r d a m was as much about creating a building suited to the rehabilitation of various patient groups as about creating a social environment for public life. In this respect, an evaluation of the social potential as

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well as the limitations of the urban site of the design location from the perspectives of patient groups in different age categories were elements addressed in team work during the Research Seminar (figure 5-6).

However, most of the students struggled with the confiicting design demands of respecting the privacy needs of patients while at the same time encouraging patients and the neighbourhood to engage with each other and share the clinic's facilities. Publicly accessible cafĂŠs and restaurants, as well as hiring out the sports hall or swimming pool in the evening, are now common strategies in rehabilitation clinics; however, this policy is far less motivated by social than by business needs. W i t h a firm belief in the social benefits of interaction, the students nevertheless suggested that the patients might even provide services for the neighbourhood, such as cooking take-away meals or selling home-made products.

A Fictional Patient Profile The complexity of a rehabilitation clinic design task is not only due to the variety of patient groups at the medical level, from those with spinal cord injuries, brain injuries, amputees or rheumatism to patients with chronic pain, but also due to the different needs of the patient groups.To reduce this complexity, each student was encouraged to focus on one particular patient group. A s a means to readily identify more with a particular patient group the students were asked to write a fictional patient profile, which had to be made more personal by giving the fictional patient the student's own name and gender, but not necessarily their own age. By not only describing the patient's affiiction, disability, the degree of immobility and the prospect of recovery or rehabilitation, but also the patient's social background, such as their family composition, the neighbourhood they live in, the job they have, or the school they attend and the hobbies they might have, a life-like portrayal of a patient was created.

This personal patient profile proved to be an excellent tool to engage students in a literature search on the medical needs and rehabilitation prospects of a particular patient group. For example, thanks to developments in the pharma-

cological treatment of rheumatism, there is less need for inpatient care and wheelchair use has become almost obsolete as early medication helps to prevent deformation of joints.^ W h i l e rheumatism patients have become outpatients, there are also new inpatient groups, such as those suffering from morbid obesity, or people with contagious tuberculosis who need to be treated in isolation from other patients.The Beatrixoord rehabilitation clinic in Haren recently opened a special facility to house these contagious patients.

New developments in rehabilitation, such as the technologically advanced exoskeleton, which enables people with spinal cord injuries to walk, or the blade prosthesis for athletes, were also explored. By sharing information on the different patient groups, a collective knowledge base was created, which helped the s t u dents make decisions on the spatial organisation of patient groups within the clinic.

One student used medical information on the recovery stages of stroke patients to organise the floors of a special wing for brain injuries, and in his particular case, stroke patients.'' The most fragile patients, in the first stage of recovery, were housed on the top floor of the building overlooking the roof garden, which provided the necessary calm and peaceful surroundings. In the process of recovery, patients are moved to a lower floor with more stimuli. When housed on the ground floor, the patient is not only able to deal with a normal environment with all kinds of stimuli, but also to actively participate in various activities.The facilities and conditions on each floor were adapted to the recovery stages of the stroke patients as the main group of people with brain injuries (figure 7).

The creation of patient profiles for children revealed that there is a strict separation between the children's department, which is often housed in a separate building, and the main building of the clinic.This spatial separation is due to health care regulations which prohibit the combining of care for children (up to the age of 18!) with the care of adults. However, as most of the interiors of children's departments reflected the dominant user group of toddlers, it encouraged the students to design proper age-related facilities for older children, such as teenagers.^We also learned that the Netherlands has a unique facility for disabled children.

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F i g . 7: Rehab R o t t e r d a m , p r i v a c y ; Ke Xu, 2013

section with gradients

of

the Mytyl Schools, which combine education on the primary and secondary levels with therapy sessions. In its architectural combination of all kinds of treatment spaces and classrooms for younger and older children, Mytyl schooling was a source of inspiration for students.'' The rehabilitation facilities in the Mytyl Schools explained why primary and secondary school children are not overrepresented in the paediatric department of rehabilitation clinics, Patients and the Clinic's Spatial Organisation A f t e r visiting several rehabilitation centres we became aware of the relationship between the care vision advocated by the management and the corresponding spatial organisation of the building which had to facilitate and not obstruct that vision.The case of the Reade clinic in A m s t e r d a m was interesting in this respect.

According to the management, the spatial organisation of the existing building no longer matched the care vision, which had moved from a mono-disciplinary to a multidisciplinary approach that demanded larger therapy spaces to facilitate various therapists treating several patients at the same time. It appeared that Reade, and probably most clinics with a multidisciplinary care vision, also used individual patient profiles for therapy purposes to determine the specific therapies and training that each individual patient requires to return to their employment and home situation.

F i g . 8 - 9 : Rehab R o t t e r d a m , Chunwen Zhang, 2012

floorplan

and s e c t i o n ;

The clinic's care vision, as ideally reflected in the spatial organisation of the building, is essentially based on the medical and disciplinary perspective of the therapists involved, while the students were more interested in the patient user perspective. However, the therapeutic perspectives also differed on issues such as the ideal distance between patient rooms and therapy spaces.These therapy spaces are either housed in different wings or in close proximity to the patient rooms which, from a managerial point of view, was considered more time efficient. A senior therapist, however, advocated a clear separation and a certain distance between the patient rooms and therapy spaces, arguing that the seemingly unpractical distance vvas in fact a positive as the best job a clinic

Fig. 1 0 - U : Participant observation on w h e e l c h a i r u s e ; Chunwen Zhang, 2012

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could do was to mimic the conditions in real life, in which patients also have to make some effort to leave home and go to work or attend a therapy session." This real-life separation of home and work inspired a student to not only design a clinic with some distance between the patients' bedrooms and the therapy rooms, but also different atmospheres, emphasising a homely environment in the patient rooms and a work environment in the therapy rooms.'"

The design solution of another student involved combining these two positions by turning the entire circulation system into a therapeutic exercise." Patients could cover the distance between the patient rooms and the therapy spaces by wheelchair, using the circular ramp that connected the floors around the atrium. A s soon as patients left their room the exercise started.To design the right angle of the slope, the student practised using a wheelchair herself and found that flat intervals in a slope are essential, not only to have a break from the considerable effort of pushing the wheelchair up the slope, but also, and even more so, for going down the slope safely in a wheelchair (figure 8-9). During her participant observation as a wheelchair user she also experienced the feeling of being overlooked and pitied for being in a wheelchair.This experience encouraged her to design situations from the perspective of wheelchair users, allowing them to meet pedestrians at eye level (figure 10-11).

To encourage patients in the long term, not only in relation to the physically but also psychologically challenging process of rehabilitation, one student suggested the option of progressive removal, rewarding the patient with more privacy and self-determination as their mobility i m p r o v e d . T h i s progressive removal entailed a move from the initial four-patient room to a two-patient room and finally to a single-patient room. Although the staff were more inclined to see the pitfalls, the student persisted in finding solutions to counter their criticisms. A s part of his social research, he volunteered as a trainee nurse and gained valuable insights into the shifting focus in longterm nursing from surveillance to increasing self-reliance and privacy, the so-called policy of nursing with hands tied.

Privacy in Rehabilitation Of all the research topics, privacy was the most illuminating, as it challenged our mainstream idea of privacy as a solely visually determined phenomenon. Visual privacy was interpreted not only as an individual's active right to w i t h drawal, of making him or herself invisible to others by closing doors or curtains, but also as the patient's passive right not to be exposed to the looks of others.The latter can only be guaranteed by the medical and nursing staff. In the context of a medical facility such as a rehabilitation clinic, visual privacy is a two-way process between staff and patients, in which the staff bestow privacy upon patients and individual patients maintain their privacy by blocking the view of staff or other patients. In the initial stage, when patients are bedridden and helpless, they have to be supervised by the nursing staff. Here, patients duly accept their lack of privacy. However, when they become mobile and more independent they will reclaim their right to privacy.The opposing views of staff and patients were revealed by a student who elicited the opinions of the interviewees triggered by a series of images or photographs." Presenting staff and patients with images of visual privacy situations, with more or less obstructed views from the corridors into the patient rooms, the staff chose the least obstructed situation, in contrast to the patient (figure 12).

F i g . 12: E l i c i t a t i o n J a n s e n , 2012

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Interviews with patients on the topic of privacy, moreover, revealed a much broader interpretation of privacy, in which visual privacy between staff and patients was only of minor concern. It became apparent that the privacy issues that most concerned the patients pertained to their own exposure to bodily noises and odours of other patients, such as a snoring roommate, or the smell when a roommate underwent an enema, which is a regular occurrence for those with spinal cord injuries. Both auditory privacy, not being disturbed by the noises made by others, and olfactory privacy, not being disturbed by the unpleasant smells generated by others, were the most appreciated types of privacy. In fact, all of the senses were related to issues of privacy felt by the patients, not only the need for tactile privacy, of not being touched by others or not having to touch shared equipment, but also in the ability or inability to control the climate in the room or the timing of the therapy.

One patient described privacy as freedom of movement and being able to move around.

Perhaps the privacy needs of patients could be best summarised as the need to be in control.

In newly built rehabilitation clinics, such as the Sophia Clinic inThe Hague, privacy has mainly been translated into the individual privacy of single-patient rooms, which indeed guarantees the patient's auditory and olfactory privacy.The transition from four to singlepatient rooms in the case of the Sophia Clinic meant a near doubling of the floor space from 10,000 to 18,000 square metres, but a reduction in capacity from 82 to 80 patients." However, single rooms are not recommended for all patient groups. Patients with spinal cord injuries have a strong tendency to commit suicide and the social support of roommates helps them to overcome this. One student resolved the issue of privacy versus social support by making units of four single bedrooms with a communal living room.

The type of privacy which was generally ignored, also in newly built clinics, was social privacy, defined as the opportunity to meet family and friends in private. From the patients' perspective, as expressed in the interviews, it was one of the most desired forms of privacy.

The students were so struck by the lack of concern for the patients' need for social privacy, as well as being keenly aware of the importance of the support of family and friends in the rehabilitation process, that most of them designed special rooms for social privacy.

Researching Rehabilitation In working together as a research team and exchanging information, students were able to assemble the necessary background medical information on various patient groups in a very short period of time.The actual social research, however, was a time-consuming process, as it appeared to be extremely difficult to make appointments with medical professionals for interviews and even more so with patients.

Under the pretext of protecting the patient's privacy most clinics abstained from cooperation in finding suitable interview candidates.

There seems to be a dominant tendency to overprotect patients and even ex-patients, not only by the staff but also by the family members of ex-patients, who do not like to be reminded of the traumatic period of rehabilitation. Despite the many obstacles in undertaking the social research the students were very committed to designing from a user perspective, and in many cases this resulted in remarkable schemes.

Arun

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Notes 1 2 3 4 5 6 7 8 9

10 11 12 13 14

Bras 2013; Cao 2013; Claassen 2013; Lu2012.

Guangjie 2013; Lu 2013.

Interview, in Ctiang 2013.

DeVleeschhouwer2013.

DeHullu2014.

Yu 2013: 12-13.

Sweringa 2013; SejIiorovS 2013.

Zhang 2013.

On the verge of retirement, Dr Mulder (Beatrixoord) expressed her views on the best possible rehabilitation clinic in an interview with Arun Jansen (2012; 16-17).

Van Gulik 2014.

Zhang 2012.

Van Niekerk 2013.

Jansen 2012.

Goes 2013.

References to the Students' Unpublished Research Reports Bras, Anouk 2013 Integratie als voorwaarde voor revalidatie.

Cao, Ruizhi 2013 Diverse Ability; From Attitude to Facility.

Chang, Chunyang 2013 Rehabilitation; WorkingTowards Effective Reintegration. Rethinking the Organization of a Rehabilitation Center and Its Architecture.

Claassen, Andrea 2013 ReĂŻntegratie van de rolstoel in de samenleving.

Het doorbreken van sociale barrières en fysieke obstakels.

De Hullu, Louise 2014 Leven met reuma.

De Vleeschhouwer, Frank 2013 Sport als sociaal verbindend element in het ontwerp voor een nieuwe revalidatiekliniek. Onderzoek naar het publiek toegankelijker maken van revaiidatieklinieken door middel van sportfaciliteiten.

Goes, Lisa 2013 De zorgvisie vertaald in ruimtelijke organisatie.

Een vergelijkend onderzoek naar vijf Nederlandse revalidatiecentra Guangjie, Xue 2013 How a Corridor Works in a Rehabilitation Center.

Harteveld, Joost 2012 De kliniek als onderdeel van de openbare stad.

Jansen, Arun 2012 The Role of Privacy During Rehabilitation of SCI-patients.

Lu,Yu 2012 IntegratingWheelchair Users into Public Life.

2013 "Waiting"; On the Space of Waiting in Rehabilitation Clinics.

Sejkorovd, Petra 2013 (The) Children's Department (of a Rehabilitation Center) and (Involvement of the) Families.

Sweringa, Anouk 2013 Meedoen leer je door mee te doen. Mogelijke faciliteiten voor gehandicapte kinderen en hun families in het Rijndam Centrum.

Van Gulik, Sofie 2014 Openheid of bescherming? Zichtbaarheid van de behandeling van patiĂŤnten binnen een revalidatiecentrum.

Van Niekerk, Bo 2013 Progressief verhuizen in een revalidatiecentrum.

Xu, Ke 2012 Public Atmosphere in Entrance Space(s); (A) Study of Entrance Space(s) in Large Health-Care (Institutions) Architecture.

Yu, Kal 2013 (A)Healing Building for the Patients, Zhang, Chunwen 2012 Social Equality for Patients in Rehabilitation Center(s).

Zhang, Xiaoqin 2013 Schooling and Rehabilitation for Children.