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Abstract

Objectives: This article describes how a home visit solution was developed in a co-design process between patients in treatment for severe spasticity, their caregivers and hospital nurses. The solution was developed using a participatory design approach and was based on the identified needs of the participants. Methods: We developed a home visit solution through an iterative process and a collective ‘reflection-in-action’ approach with patients, caregivers and healthcare professionals. Results: The study revealed the complexities of establishing new routines around home visits. The solution included a new workflow for the nurses and a new route and appointment planning tool. Conclusion: Through a participatory design approach, the users developed a home visit solution that minimised disruption to patients’ daily lives and facilitated a dialogue between the nurses and the caregivers about the treatment and the patients’ spasticity, which helped to adjust the treatment in line with the patient´s needs.

Keywords

assistive technologies clinical decision-making collaborative work practices and IT modelling healthcare services organisational change and IT healthcare service innovation and IT IT design and development methodologies

Background

Spasticity is a severe problem for many people with diseases of the central nervous system such as multiple sclerosis, cerebral palsy, spinal cord injury and stroke. Spasticity results in tight, stiff muscles that can impair movement and body control, and it is often associated with severe disability and pain.¹ Most people who experience spasticity are partially or wholly dependent on others for their daily functioning.²

Intrathecal baclofen (ITB) is a specialised treatment for patients in whom oral treatment has failed.³ The ITB infusion system is implanted into the spinal space of the patient, who is then required to attend long-term follow-up with scheduled refilling appointments and regular monitoring at the hospital. Although the Danish health service is largely free of charge and aims to ensure equal access, vulnerable patients have more difficulties accessing healthcare services and benefitting from them.⁴ The Danish government’s recently proposed healthcare reform includes replacing some hospital outpatient visits by municipality services and house calls. This is especially important for patients with severe spasticity who require constant help and care.⁵

A common challenge when integrating new technologies and approaches into conventional health service delivery is that the technologies are developed without a clear understanding of the clinical problems and requirements.⁶ Prioritising the preferences and understandings of health professionals over patients’ wishes for health IT is a problem emphasised in the literature.^7,8 Research underlines that patient and public involvement is meaningful in implementation and evaluation in digital health innovation and enhances the overall effectiveness of systems.^8,9 If new methods take into account patients’ and users perspectives, the results are likely to be more readily implemented into clinical practice^10,11 and be targeted towards the individual’s needs, resources and disease complexity.¹²

Participatory design entails learning from the participants and solving real problems in collaboration with those who experience them.¹³ Involving representatives of patients with severe disabilities at the design stage can thus help improve delivery of healthcare to this patient group.¹³ It may be difficult, however, as people with spasticity have widely varying characteristics and needs and may interact with technology in diverse ways.¹⁴

The current study was initiated due to the challenges faced by patients with severe spasticity in hospital settings. These challenges include strenuous trips to and from the hospital, long waiting times and often finding themselves unaccompanied by their caregivers despite relying heavily on them for managing mobility and treatment. Initiatives for healthcare treatment that is closer to the patient, e.g. treatment at home supported by telemedicine, are underway in Denmark and internationally¹⁵ to provide responsive and coherent care.¹⁶ Treatment with intrathecal baclofen involves a practical procedure and is an example of treatment that cannot be handled by telemedicine. The Care4homecare approach in the Netherlands offers ITB treatment at home as a sustainable and efficient option.¹⁷ Inspired by this solution, our hospital clinic offered home visits for 2 months in the spring of 2020 under the COVID-19 lockdown to reduce the risk of infection among this vulnerable patient group. We found that these home visits were well received by patients and caregivers alike, and they laid the foundation for developing a home-based solution supported by technology that addresses inequality in access to health services and the need for responsive care.

This article describes the design and development of a sustainable home visit solution for patients with spasticity treated with intrathecal baclofen. We place special emphasis on the co-design process in which patients, their caregivers and nurses were involved in a participatory design approach. The results of an evaluation of the developed solution will be presented in a separate article.

Material and methods

Participatory design

Participatory design (PD) seeks to involve people in the design of solving problems in their everyday environment and has been used successfully in nursing to resolve clinical practice issues.¹³ PD is evolved from action research, which is characterised as a participatory democratic process concerned with developing practical knowledge.¹⁸ Action research traces its origins back to the social experiments of Kurt Lewin in the 1940s, who focused on solving practical problems together with the people who experienced them.^18,19 This approach opened up a new possibility for researchers to engage with interested users and laid the foundation for the PD methodology.^13,20 PD lends a voice to those who will use technology but may not be able to define what they want or are unaware of what is possible.^13,20 The fundamental principles of PD are telling, making, and enacting through iterative processes¹⁹ and mutual learning for both users and designers.

Setting

Patients with spasticity often have severe disabilities and are dependent on specialised transport in cars for people with disabilities, carpooling or ambulance when visiting the hospital for their regular appointments for checkups and for refilling their ITB infusion system. Some patients need a caregiver to be present for practical help or communication about the treatment. The hospital’s catchment area covers 3000 km² and includes several small islands that are reached by ferry. This means that for some patients, the journey to the hospital can take several hours or the better part of a day.

Refilling the pump system is an invasive sterile procedure and is performed by a nurse with special training in ITB treatment and programming of the implanted pump.²¹ The baclofen dose is adjusted as required according to the patient’s spasticity in a collaboration between the patient, the caregivers, the nurse and the treating physician.^3,22,23

The home visit solution aimed to cover the visits related to scheduled refilling performed by nurses, with delegation for dose adjustments. The home visit solution was not intended for management of acute problems or the annual medical check-ups; these continued to take place in the hospital under the supervision of a physician.

Participants

The study participants were primarily patients with spasticity but also included the patients’ caregivers and nurses, other members of the hospital ITB team, an IT specialist and the research group.

All 58 patients treated with ITB at the hospital were invited to participate in the study regardless of their age, sex, diagnosis, housing form or place of residence (Table 2). Therefore, no calculation of the sample size was done. This was an important decision by the research team to avoid inequality in access to health care and to ensure inclusion of patients with disabilities who lived far away from the hospital. One patient was excluded from the PD phase due to psychiatric co-morbidity but was still offered home visits for treatment. Another patient agreed to participate in the study but for practical reasons continued with hospital visits only.

Different caregivers (in this paper described as the person performing personal care to the patient), were invited to participate when we came to the patient’s nursing home, institution or place of residence for refilling appointments. The caregiver who was present with the patient could change from time to time and could not be defined as a specific group in the PD process.

The nurses providing the hospital ITB treatment were invited to participate in the study by collaborating in the development of a solution for home visits on a trial basis. The characteristics of the hospital nurses are shown in Table 1. The department management approved their participation and the expected use of nursing resources during the study period. This was important as we wanted to encourage participation from different levels within the organisation.^19,24

Table 1.

Characteristics of the hospital nurses participating in developing of the new workflow.

ID	Education	Years of education	Experience with ITB (years)	Experience with ITB home visits (number)
1	Nurse	20	5	2
2	Nurse	15	1/2	2
3	Nurse	27	10	5
4	Nurse	22	5	0
5	Nurse	27	18	0

The process was supported by other members of the hospital ITB team, including the physician and team secretary, and by the department management. These participants provided continuous feedback on practical and organisational issues. The characteristics of patients are shown in Table 2.

Table 2.

Characteristics of patients.

Characteristics of patients
Age (years, mean)	54,6
Age (+/− SD)	14,2
Male:Female (n)	35:22
Diagnosis	Multiple sclerosis (n) 21
	Spinal cord injury (n) 9
	Stroke (n) 7
	Cerebral palsy (n) 9
	Brain injury (n) 9
	Other (n) 2
Housing	Owning/renting (n) 36
	Institution (n) 11
	Nursing home (n) 10

Data collection

Creative workshops are a common approach in PD to develop solutions based on identified needs. Due to the COVID-19 pandemic, however, we felt it was unjustifiable to hold a physical meeting including vulnerable patients for research purposes, and many of the patients were unable to contribute their perspectives in a creative workshop due to their medical circumstances. Instead, we designed a prototype solution through an ongoing iterative process that comprised home visits to conduct participant observation and facilitate mutual learning, combined with discussion meetings with the ITB team to identify issues that needed solving. This solution, where patients interacted with fewer people, was more applicable to accommodate patients’ opportunities to contribute to the process.

The prototype solution consisted of a new workflow and the development of supporting technology. This solution was applied and adjusted in the light of the experiences and feedback from patients, caregivers and the health professionals.

The first author collected data through home visits by observing the challenges that arose with the new workflow and facilitated mutual learning between the patients, caregivers, and nurses. It was important to have mutual respect for the knowledge, experiences and perspectives of each participant, and these different aspects were recorded, listened to and incorporated. Users of the new solution were encouraged to have their say and to express their opinion about the process. In the same way, the IT specialist and the other study participants suggested innovative solutions to issues or problems that arose. The first author was already familiar with both patients and nurses, which allowed for an open, honest and direct dialogue in the PD process. Likewise, the first author was experienced in the practical baclofen procedures and thus had the insights to understand challenges with these. This was essential to keep focus on the treatment during the home visits and ensure the quality of care in the development period. Due to prior knowledge of the field, the first author might have been subject to blind spots. To address this, a structured approach with a prepared schedule for data collection and structured reflections with the participants was applied. This ensured focus on the design and development process and supported an open-minded approach.

Any ideas, adjustments and improvements to the new workflow that could be tried immediately were initiated. Requests for adjusting the technology for route planning were discussed with the IT specialist and implemented where possible.

The design and development of the prototype took place between February and November 2021.

Ethics

All participants received oral and written information about the study and gave oral and written consent to participate in it. Patients with serious cognitive impairments participated with consent from their guardians. A caregiver was present when visiting cognitively impaired patients in nursing homes or institutions to provide support to the patient.

The study was registered with the Danish Data Protection Agency (No. 20/25044) and was reported to the Danish research ethics committees, who found the study exempt from the obligation to notify according to Danish legislation.

The IT specialist ensured the necessary precautions for data security in developing the route and appointment planning tool. The final tool required a user ID and a password.

Analysis

Field notes were made after each home visit in a prepared schedule, describing the nurses’ preparation and planning for the day, challenges encountered and any suggestions or ideas. All challenges and suggestions that came up were discussed with the nurses and the patients and caregivers who received home visits the following week. All the nurses, patients and caregivers were continuously allowed to have their say by sharing their experiences, wishes and ideas. Based on this input, the workflow was adjusted using the ‘reflection on action’ method.¹³ The notes were analysed in ongoing iterations by the first author using the ‘plan, act, observe and reflect’ method according to the PD approach.²⁵

It was not possible to predict the number of iterations required to develop the final technology. Based on each iteration, the next phase was planned to obtain mutual learning through shared experiences. The first author collected all iterations and had primary contact with the IT specialist to discuss relevant issues.

Results

The study included 57 patients who were treated with intrathecal baclofen. The data collected included the needs of patients and caregivers as well as practical issues experienced by the nurses, e.g. ergonomics, how to keep equipment sterile during a home visit and how to deal with documentation. The first author also looked for general problems that could be resolved on the fly. Statements from nurses, patients and caregivers were collected in a scheme for data collection (Figure 1).

Figure 1.

Scheme for data collection. Time consumption and tasks in connection with outpatient baclofen pump treatment.

The final home visit solution comprised home visits, communication with caregivers, a new workflow for the nurses, and a new route and appointment planning tool. The existing and the new workflow are illustrated in Figure 2.

Figure 2.

Existing and new workflow.

Home visits

The usual hospital appointments for refilling the ITB infusion system were converted into home visits. The nurses’ transportation time and their working conditions were taken into account when planning the home visits. A car was rented from the hospital, and the number of feasible visits was tested and continuously adjusted in accordance with the nurses’ experiences with the time spent on home visits.

After 9 months of adjustments to the prototype, it was possible to serve all patients with home visits. The patients, caregivers and healthcare professionals all believed that these home visits for ITB treatment were less stressful for the patients. With careful planning and scheduling of visits, in agreement with the nurses, it was possible to manage these visits within the same resources available.

Communication with caregivers

Some patients were capable of informing their caregivers about the treatment and the specific functions of the pump system that require attention. For patients with cognitive disabilities, it was important for the nurses to inform the caregivers about the function of the pump system and to have a dialogue about the patient’s spasticity. This had previously been a challenge if the caregivers did not attend the hospital visit.

In contrast to hospital visits, caregivers had the opportunity to participate in home visits, which was important to the patients. The caregivers were sincerely interested in the treatment, and they gained a better understanding of both the treatment and the patient’s health. For example, caregivers without a health professional background could mistake spasticity for seizures caused by epilepsy or contractures. This misunderstanding was clarified because of the improved communication between caregivers and the hospital nurses. Furthermore, caregivers shared crucial information about the patient’s spasticity with hospital nurses, enabling treatment adjustments based on the patient’s specific needs. Thus, home visits provided an opportunity for caregivers to be present, which had a significant impact on the treatment.

Illustrations of an implanted pump system were laminated for use in communication with caregivers. This helped the nurses to explain and the caregivers to understand the aim of medication given intrathecal and supported the communication about ITB treatment. It also helped the caregivers to observe and assess the effect of the treatment.

New workflow

The nurses had many concerns about practical issues on how to transport the necessary equipment to the patients’ home and how to ensure sterile conditions when providing the treatment. A workplace assessment was conducted to focus on and help resolve these issues and to ensure an acceptable working environment.

It was important for the nurse’s ability to provide quality care that she felt confident driving a car, was familiar with the equipment she brought along and the technical procedures about the baclofen pumps, but also that she was comfortable working within the confines of the patient’s home setting.

The nurses found the ongoing documentation annoying during home visits as access to the journal systems required a two-factor code. This took extra time compared with access when inside the hospital. Before leaving the hospital, the nurses reviewed the patient’s journal and prepared a scheme of relevant information to take with them to the patient’s home. A rolling toolbox was also brought along for the equipment necessary for each home visit.

Depending on the time available, some nurses preferred not to write the journal until they were back at the hospital where access to the journal was easier. At the beginning of the study, the nurses were dependent on the journal system for booking the next appointments for refilling the ITB infusion system. However, this was time-consuming and did not factor in the transportation time. Thus, a new technology was developed for planning the best route to the patient’s home and for scheduling the home visits.

Route and appointment planning tool

Transport between patients’ homes was time-consuming, and we knew that resources had to be utilised optimally to enable all ITB patients to be included in the home visit solution. Furthermore, the nurses wanted to avoid having to contact patients repeatedly to reschedule appointments if visits to other patients were added for the same day. The nurses also needed to know how many visits they could plan in 1 day to allow for the transportation time and the length of the visits.

At each visit, the nurse needed to make a new appointment with the patient to ensure that the ITB pump was refilled before it ran out of medication. The patients wanted the nurses to specifically state what time they would arrive to allow caregivers to be present (if desired) and to avoid interfering with morning routines or other activities such as physiotherapy and work. The patients had previously received a text message from the hospital with a reminder of their hospital appointment, and they missed this opportunity in the new workflow.

These considerations led to an iterative process in the development of a route and appointment planning tool. At the start of the study, the first author planned the nurses’ routes manually, calculated the transportation times and determined the number of visits for each day. Each patient was contacted by telephone a few days before the visit to confirm the appointment. When one of the nurses suggested using technology for these tasks, an IT specialist in route planning was asked to design a route-planning tool based on the ideas and needs of the participants.

The route and appointment planning tool was made as a homepage that was accessible from a computer and a mobile phone and was thus easy to use at the hospital or en route. A mobile phone was purchased for the car to take along the route.

The names and addresses of all patients participating in the study were entered into the route planning tool. Initially, the tool simply calculated the shortest route between certain addresses and worked as a global positioning system. Access to the homepage was added with user ID and password to ensure data safety. The next addition allowed patients to choose a time slot for a home visit by entering start and end times for visits to ensure they took place within a certain period of time.

The IT specialist added a text message feature with a pre-written message to tell the patient that the nurse was on the way to their house. The text could easily be sent by the nurse and could be edited as required. The patient could also reply to this message. A phone call feature was added to the route planning tool for the benefit of patients without a mobile phone or for caregivers at nursing homes or institutions who could not receive text messages. Table 3 outlines and lists the features of the route and appointment planning tool and their potential impact.

Table 3.

Outline and overview of features corresponded to different needs of participants.

Needs of participants	Features in the route planning tool	Potential impact
Planning of the dayHospital nurses and department management	- Names and addresses incorporated- Route calculation- Easy access to global positioning system- Calculates the time used on visits and transport- Daily overview of patient visits- Possibility for short or long visits- Warning to avoid overbooking	- Time-saving for patients and caregivers- Collect patient visits geographically- Reducing transport time- Time optimization- Avoid working overtime- Time tracking for nurses and department management- Cost savings
Security with patient dataDepartment management	- User id and password for the home page	- Easy access to patient data on the route
Flexibility in lifePatients and caregivers	- Time blocking- Start and end times for visit	- Patients or caregivers can request specific time slots- Next home visit can be planned immediately- Treatment have minimal interfering with everyday life for patients and caregivers
Communication with patients or caregivers along the routeHospital nurses	- Phone numbers- Icon for text message with a pre-defined message- Icon for quick dial	- Patients and caregivers can be prepared for the visits e.g. with positioning in bed

Using the route planning tool, nurses could adjust the visit duration based on the specific purpose of the visit. This meant that the nurses could now take responsibility for planning the number of visits and the length of their working day themselves. The tool could also be accessed by a secretary from a computer at the hospital if a patient needed to move an appointment. The route and appointment planning tool supported the new workflow with home visits and became an indispensable tool for daily planning.

Discussion

A sustainable home visit solution was designed and developed for patients treated with intrathecal baclofen. Patients with severe spasticity are partially or wholly dependent on others for their daily functioning. The patients were experiencing a strenuous transport, long waiting times and were often unaccompanied to hospital visits even though the caregivers were responsible for managing mobility and treatment.

Initially, the nurses were sceptical about the new working conditions due to practical issues, such as how to bring the equipment, secure sterile conditions and how to access the journal system. At the same time, the nurses had concerns about accomplishing the same standard of treatment in home settings under the different working conditions. The study demonstrates the possibility of managing hospital treatments differently, situated in new working conditions as well as overcoming practical challenges for nurses by systematically solving practical issues in an iterative PD process. After each visit, knowledge of the home visit solution was improved by using reflection on action to develop the solution based on our previous experiences. At the same time, home visits made it possible to fulfil the needs for a dialogue and fruitful collaboration with caregivers at nursing homes and institutions, as well as caregivers at any place of the patients’ residences. Through home visits, caregivers had the chance to be present, learn about, and discuss the treatment of the patients.

When the new workflow with home visits was developed, the home visits were met with scepticism among nurses because of the time spent on transportation. However, patients with severe spasticity represent a group of patients who in general have more difficulties accessing healthcare services and benefitting from them; thus, home treatment seems to accommodate their needs and provide an improved healthcare service through closer cooperation with caregivers. The route and appointment planning tool gave the nurses an overview of transportation time and allowed them to take responsibility for planning the number of visits and the length of their workday.

Developing a new workflow requires a starting point in practice and involvement of the users. This has been achieved through a PD process by bringing the core values, such as involvement and mutual learning, into play. PD accommodates both the nurses’ scepticism and resolves practical issues that arise in the development phase. PD is a method to comply with those issues and has helped create a valuable, durable solution in the development process.

PD is based on collaboration between researchers and relevant participants to identify a problem and co-create and plan a trial phase for testing a solution.¹³ Ethical aspects of unaccompanied patients at outpatients’ visits and travelling alone without caregivers have, however, been discussed for a long time at the Department of Neurology.^26,27 In our case, a solution for home visits was discussed as the nurses identified hospital visits as a problem that could be managed differently. Investigation of ITB treatment in a hospital setting supported this, which led to the development of a home visit solution. In designing and developing this home visit solution for a sensitive group of patients, it was unjustifiable to gather a group of patients, caregivers and healthcare professionals for research due to the risk of COVID-19 infections. Furthermore, not all the patients were able to contribute with any approaches to the form of treatment due to their medical circumstances. This dilemma has also been discussed in other participatory design projects in which participants for various reasons were unable to participate in workshops as planned.²⁸ A limitation in the study could also be the sample size of participants, as only 58 patients were treated with ITB at our hospital. Furthermore, there was no control group. Vulnerable patients may also find it difficult to participate in the design of technological solutions for use in healthcare, just as there may be challenges in the use and benefits of the many technological solutions that are developed.²⁹ Genuine participation is a core value in PD. According to Clemensen et al., patients and caregivers participate with thoughts and ideas for the solution, not only through creative workshops but through interactions with the nurses as active partners throughout the process.^19,28 The solution was developed through ongoing iterations in collaboration with patients, caregivers and nurses. The first author was the connection between the users and participated in all iterations, as they were not gathered in workshops. The focus was on creating mutual learning between the users, facilitated by the first author, who participated with reflections-on-action in the patients’ homes. Reflections-on-action were facilitated as the first author shared experiences and ideas between the different user participants. Furthermore, the first author helped with socio-technical systems, such as Internet connection, accessing the journal system and facilitating the design and development process. This was the most suitable way to facilitate mutual learning and develop a solution-based user involvement, as the patients’ medical circumstances prevented us from working work abstractly with the solution in creative workshops. By participating in all home visits, the solution was developed through ongoing adaptations in collaboration with patients, caregivers and nurses. Thus, learning from practical experiences was not only significant for developing a sustainable home visit solution, but necessary to put the principles of PD into action with this particular patient group.

This approach makes it possible to get all users to participate where they otherwise would not have been able to contribute to research. An example of this was that some patients wanted an approximate time for the visit. Some patients stated that they prioritised participation in training or needed time for e.g. morning routines. The nurses learned about those needs and they was taken into account when developing the features in the route planning tool.

Organisational changes necessitate readiness on many levels and require that all members of the organisation jointly commit to wanting to create this change. The organisation must also assist in strengthening those involved in the belief that the change can be made and successful at that.³⁰

Despite the limitations of the change process in designing a new workflow, the project included vulnerable patients and gave them a voice in the development of home visits.

Conclusion

Previously identified needs in the treatment of severe spasticity led to development of the prototype with a home visit solution for patients treated with ITB supported by a tool for planning routes and appointments. By using PD eller participatory design, mutual learning was facilitated, and a solution was developed. Careful planning and scheduling of visits made it possible to manage within the resources available and the new tool for planning routes and appointments proved indispensable for daily planning. This study contributes with knowledge about collaboration with a vulnerable patient group and shows how this can lead to a new workflow that accommodates the patients’ struggles during hospital visits and contributes to greater collaboration with caregivers.

Footnotes

Acknowledgements

The author wishes to thank the participants in the study.

Author contributions

Lena Skovgård Petersen: Design of the study,data collection,data analysis,draft,revision and final approval of the manuscript

Anne Dichmann Sorknæs: Design of the study,analysis and critical revision and final approval of the manuscript

Helle Hvilsted Nielsen: Design of the study,critical revision and final approval of the manuscript

Charlotte Nielsen: Design of the study,supervision during data collection,data analysis,critical revision and final approval of the manuscript.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research,authorship,and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research,authorship,and/or publication of this article: The study was funded by the Department of Neurology,Odense University Hospital.

Ethical statement

ORCID iDs

Lena Skovgard Petersen

Charlotte Nielsen

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Development of a home visit solution with a route- and appointment planning tool for patients with severe spasticity: A participatory design study