achtermanncarolin 23570 292052 Final Report Relative Support

Final ReportService Design Malmö University May 2019

Karl Söderby Kristina Arnold Jonas Drewling Lucas Stenberg Carolin Achtermann

Table of Contents

1 Timeline2 Introduction3 Desk Research

ExistingDigitalOffersforRelative Support

4 Field Research5 Approach5 CharacteristicsoftheService5 Stakeholders5 Stakeholder Map4 Methodologies 6 User Journey Map7 Empathy Map7 Actors Map8 Four-Part Map8 Persona9 Interviews 10 Co-Design Workshop 10 Planning10 Co-design Workshop11 Analysis and Results- Insights

fromtheInterviews11 Communication12 Individual and Trusted Care12 Psychological Support13 InsightsfromCo-designWorkshop14 Workshop Insights 15 OpportunitiesIdentified16 Design criteria

16 ProposalofServiceRe-Design17 Description18 Blueprint 19 ValueStatementofProposed

Redesigned Service19 Valueaddedforrelatives20 ValueaddedfortheMunicipality21 VisualizationsoftheRedesignedService22 The Mobile and Tablet Application23 User Testing24 Implementation25 CriticalReflectionsandNextsteps26 References

25. April

Desk Research

9. April 10. April 17. April 23. April 25. April

InterviewPatrik

InterviewLena & Eva

InterviewAnita

InterviewLiselotte

MappingData

26. April

InterviewMaria

29. April

InterviewEnBraPlats

2. Mai

CoDesignWorkshop

Timeline

Field Report& Presentation

9. Mai

FirstIdeation

13. Mai

App &Platform

15. Mai

PhoneFeedback

23. Mai

UserTesting

24. Mai

VideoPrototype

FinalPresentation

01

The aim of this project is to develop a design proposition to support the communication bet-ween relatives of patients enrolled in the muni-cipal health care program, and the municipality itself. The municipal health care program offers support for patients that are over the age of 75, typically suffering from cognitive diseases such as dementia, with the focus of the project being on Perstorp, a municipality with 7’000 residents in the northern region of Skåne, Sweden. This project is undertaken in collaboration between Malmö University and Innovation Skåne.

Caretaking relatives are defined in the framework of this project as stakeholders that care for a clo-se family member more than once per week and typically live with that person in the same hou-sehold. In our age group, the caretaking relative is hence often times the partner. Field research revealed that in this focus group, cognitive disea-ses such as dementia and depression are most common, and therefore will be focused on in this project.

In order to identify new service design oppor-tunities for our focus group, insights into the ecosystem that surround the caretaking relative including the municipality, the home care service and the relative support center, are gathered through interviews and a co-design workshop, as well as desk research. The report summarizes these insights and suggests a redesigned digital service design solution.

Introduction

What kind of channels and digital tools would the municipality be able to use to support communication with relatives for patients who are enrolled in municipal health care?

02

Currently, 1,3 million people help and support a close family member regularly in Sweden and thereby fall under the category of “relative caretaker”. The majority are part of the working population and their work as caretakers saves the Swedish society 177 billion Swedish kronor every year (NKA, 2016).

Sweden introduced the individualized care system in 2009, which is currently in place and assigned the municipalities the obligation and autonomy to support relatives in caretaking of family members (Riksrevisionen, 2017). The criteria for such support are individualisation, flexibility and quality. The government authorized Socialstyrelsen, the social ministry, to guide the municipalities in the implementation and foun-ded a national competence center for capacity building (NKA, 2016).

However, the Swedish National Audit Office that is tasked to analyze the impact of national po-licies, proclaims that the state is not able to ad-dress the individual needs of relative caretakers in a flexible way. There are large differences wit-hin as well as between municipalities in terms of support offered and municipalities have organi-zed and financed their relative support differently and municipalities have not received enough guidance on how to support relatives (Riksrevi-sionen, 2017) and reporting and documentation of municipalities has been weak. The needs of relatives have not been fully met, which include both the trust that the partner or family member receives good care and treatment but also to re-ceive individual and flexible support. Care-taking

by a relative is voluntary in Sweden, since the state offers an alternative through the social care services. However, as the Swedish National Audit Office’s assessment found through interviews is that many take on more responsibility than they actually want to due to shortcomings in existing health and social care services. Worries about the health and social care for the family mem-ber is a major factor for the care-taking person‘s needs. This includes trust in the housing situa-tion, home care, treatment and having educated staff with the right expertise. Many relatives feel that one of the heaviest burdens they have to bear is the coordinating role they often have to take on board for tasks that would otherwise not be taken care of. The carer’s need to be recog-nised and receive information and knowledge is rarely met in contacts with health and social care services (Riksrevisionen, 2017).

Socialstyrelsen, the Swedish National Audit Of-fice as well as the National Competence Center for Relatives found that the best way to support relatives is by providing the close family member the best care possible. In addition, relatives need to know where and which kind of help they can get, how they should apply and which rights they have including support mechanisms such as fi-nancial benefits, short term care or adaptation of the home to the new needs of the family mem-ber. Also, relatives wish to have a better collabo-ration between different caretakers in the system so they do not need to coordinate themselves. In addition, relatives seek to get support for themselves too, in form of knowledge and skills around how to take care of the family mem-ber but also for oneself. Information about the importance of relatives that take care of a family member needs to be disseminated through the entire health organization.

This includes information on how to support relative caretakers best with information and a personalized approach. Similarly, the Swedish National Audit Office interviewees felt that they have had to fight to get the services that their family member requires from the municipalities and that they are at a disadvantage in relation to the municipalities when it comes to knowledge about which service/s their family member is entitled to.

Research at Lunds University showed, that rela-tives taking care of someone with dementia or depression have the highest burden when taking care of that person at home. However, research also revealed that relatives that do care for their family member at home without experiencing high stress have in fact a higher life quality and health then when they do not provide care at home (Wendel, Anna-Mi, 2015).

The desk research provided a valuable starting point to gather insights into personal care si-tuations of relatives in the small municipality of Perstorp. It appears also from research that when caretaking of a family member works success-fully and the relative is supported in the best way possible, it enhances and increases quality of life for both the patient and the relative.

03

Desk Research

Existing Digital Offers for Rela-tive SupportThe desk research also covered existing digital solutions in this field. En bra plats is a website so-lely made for the support of relatives to provide information and an anonymous place to meet others in the same situation. The service needs to be purchased by the municipality and offers a service called “Dementslotsen” that works as a GPS for the relative of someone with cognitive disorders. It consists of 16 steps and it works as hub for stage-specific information to inform the relative what will happen at a specific stage in your loved ones mental decline. For instance one step could tell the relative that it may be time to start looking into having shared care, start loo-king at which homes is best suited, how to/what kind of help you could get from the municipality, what is common for a sick person to be doing at this time or even how to apply for financial aid.

It’s purpose is to help guide the relative through the massive amount of pitfalls that they could fall into whilst taking care of someone with a cognitive disorder. The platform also offers a feature where they match a relative with someo-ne else who is in the same position to exchange experiences as well as share best practice. En bra plats is also used by the caretakers, doctors, nurses and the people who work in the elder-ly homes for instance. En bra plats works as a way for them to get information about specific cases, they could get into contact with a nurse or a doctor from a larger municipality which has had special cases that may not be as common in small ones and see how they handled it. So En bra plats works also as a platform between relatives and professionals.

ApproachThe team looked at the municipality of Perstorp, analysing existing services that are in place for the relatives. We found multiple organisations that offer support for relatives and were provided with an initial contact for a decision maker within the municipality administration. We started to set up meetings the municipality first and later with external stakeholders from outside the munici-pality.

The interviews took place in Perstorp, Lund, Mal-mö and also on the phone. After every interview, we analyzed the notes to get the main insights out of the interviews. We started the first Stake-holder Map before and the first User Journey map after the first interview. Over time we upda-ted these maps and added an empathy map and persona.

All of the data we collected from interviews and desk research were later compressed into problems, which we presented at the co-design workshop that we held with various participants in the municipality of Perstorp. At the co-design workshop we narrowed these problems down to define focus areas and problem opportunities with the help of both relatives of patients and staff of the municipality.

Field Research

Overview

04

Characteristics of the Service

Perstorp exclusively offers support through the relative support office which employs one re-presentative who solely cares for and supports the relatives of people who currently are within the healthcare system. Anyone over 18 years that takes care of a close relative is receiving this support which offers information, psycholo-gical support and a place to meet other relati-ves. Also, the representative informs relatives in economic matters, how to apply for support, where to turn to when it’s about time for them to live in an elderly home. The service is offered for a year after the loved one has passed away. Currently, the service is offered exclusively via phone, a website and mostly personal contact.

StakeholdersBy defining the key stakeholders, we knew where the focus needed to be, and most inter-views conducted were mainly concerning the inner circle, visualised in Fig 1, where stake-holders such as the relative support centre, caretakers, red cross and the patient reside. Outside the circle we spot stakeholders that are less involved in the day to day life of the relati-ve, such as hospitals and pharmacies. The most valuable service that we could iden-tify, that currently is offered by the municipality, is the relative support person (RSP). An import-ant insight collected from the both interviews and desk research is that the relatives needs psychological support, where this service exists to serve just that. Relatives can contact the relative support centre, which is run by only one person, Lena, where they can talk about the tough situations they face on a daily basis. This was identified as one of the best and most

helpful services the municipality has to offer, where one relative quoted “I would not have made it without Lena”, expressing great gratitu-de to this particular service. While Lena strives to help as many relatives in the best way possi-ble, she is also overworked, where as many as 100 relatives contacts her each month, some of which meet in person every two weeks.

Stakeholder MapOur final stakeholder map includes three main actors: the relative, the patient and the municipa-lity as well as related stakeholders like the home care service, the elderly home, the relative sup-port office and others. The closer to the centre, the more vital they are to the relative (see Fig. 1).

Figure 1: Stakeholder Map

05

Methodologies

Via different visualizations, the content of the field research has been organized and mapped out.

User Journey Map The journey map shows the steps of the existing service before,during and after. The important aspects to note here are the stress level the rela-tive experiences and the emotions that are felt

during different stages of the service. This can then be directly associated with the activities that are involved in relation to the touchpoints which reflects on some of the major problems.

Figure 2: User Journey Map: understanding emotions and experiences of relatives

06

Empathy MapThe empathy map is a representation of the thoughts and feelings related to to what the relative does and says. This is providing a slightly deeper insight into the experience of the relative and the things represented in the map stem from the relatives directly. This data can be linked to the created per-sona in Figure 3.

Figure 3: Empathy Map: visualizing what the user feels, thinks, says and does

07

Actors MapThe actor’s map shows the connections between the stakeholders highlighting the important roles in the service. It is an overview that focuses on the three main stakeholders, represented by the red circles. Arguably the activity that goes on between the red circles is most important and we can see how other aspects of the service come into the scenario, repre-sented by the orange and light red circles.

Figure 4: Actors Map: overview of actors and relationships

Four-Part MapThe four-part map represents the biggest problems iden-tified by our stakeholders during co-design workshops. The stakeholders are represented by different coloured sticky notes. The map consists of a positive and negative side and insights are either placed higher for being more severe or lower for being less severe. The four-part is a results of the co-design with the stakeholders and the design opportunities that were identified and discussed.

Figure 6: Four-Part Map: visualizing the challenges to identify the most pressing problems and formulate design opportunities.

08

”I just need time for

myself”

Age 65

Status married

Location Perstorp

This Photo by Unknown Author is licensed under CC BY-SA-NC

RUTH

ABOUT

GOALS PAIN POINTS

NEEDS

Patient Positive

Caring Extrovert

Ruth has observed the initial stages of dementia of her husband. She is in close contact

with the local relative support and depends largely on it. She struggles with the

psychological and behavioural changes of her husband and needs more time for herself to

recover from caretaking.

Get through the care-taking days, keep her

own social life intact

24/7 care-taking, psychological burden, no

time for herself, transfer to the elderly

home, guilt towards husband

PERSONALITY

To know husband is safe and well, to have

contact with others, ventilating and

exchanging experiences

Ruth is a hands-on person that tries to

accept the challenges with her husband in

a humorous and positive way, but she

struggles with his behavioural changes and

him opposing to go to the elderly home.


myself”

Age 65

Status married

Location Perstorp


RUTH

ABOUT

GOALS PAIN POINTS

NEEDS

Patient Positive

Caring Extrovert










PERSONALITY










myself”

Age 65

Status married

Location Perstorp


RUTH

ABOUT

GOALS PAIN POINTS

NEEDS

Patient Positive

Caring Extrovert










PERSONALITY









PersonaThe persona represents our typical relative. The persona helps to emphasize on the relative du-ring the design process during different stages, like ideation. It also helps putting the data from our research into a more natural human form.

Figure 5: Persona: providing empathy for the ideation process

Our method of interviewing was quite simp-le, we had one set of open questions, gene-rally used for all interviews, followed up by specific questions, that were more appro-priately targeted at the interviewees profes-sion. The aim was to get the conversation started, let the interviewee be the driving force and for us to be mainly listening. Over the course of a month, we managed to or-ganize several meetings with both relatives of patients and staff in the municipality of Perstorp, but also people from other regions of Skåne. The aim of these interviews was to get diverse views from multiple stakehol-ders, in order to collect as much data and insights as possible and to ultimately get a good perspective on what kind of problems that occur frequently in the day to day lives for the stakeholders involved. Semi-structu-red interviews were conducted with stake-holders (see Fig. 7).

Interviews

Fig 7 – Interview Participants Overview 09

PlanningPlanning the Co-design workshop in-volved brainstorming around the most important aspects in relation to our upcoming workshop. We made decisions based on what we needed to get out of the workshop in this part of our design process. Our biggest task at this point was to narrow down and find a meaningful focus for the project. All the problems and opportunities we had found could be labeled as important, coming down to the question of who needs their problems addressed the most. The relatives or the municipality?

With the focus of the workshop in mind and our previous brainstorming and discussion, we put together a proposed layout which is seen in Fig 8. We simpli-fied the user journey/critique section. All the changes we made before the work-shop were due to time restraint.

Co-Design WorkshopThe workshop consisted of four parti-cipants which also represent our main stakeholders in this project. Three of these were previously interviewed: Lena, Maria and Eva. Zora is the only new par-ticipant. She is a relative caretaker who has worked two years at home taking care of her husband who has dementia. The first activity was for the participants to write down their “Pains and Gains” on post

it notes (Fig 9). This essentially means writing down all the positive and nega-tive aspects of the service in relation to their respective situation and role within the system. Next we let our participants cluster these problems and categorize them on our chart, which can be seen on the door in Fig 10 and Fig 11.

Once all of the participants points had been assigned to the chart, we then moved on to present our own problems and insights, which we had derived from previous interviews and data analyzation. The participants then assigned those to the chart as well. From there we emphasi-zed discussion of the identified problems and insights (Fig 11), eventually getting to the most important aspects of the whole process. Although we hadn’t planned on including implementation and proposition stages in this workshop, we ended up di-scussing “How might we?” scenarios due to the fact that we had done well on time, which was extremely valuable to us. The workshop concluded with the gathering of feedback on the workshop itself and thanking the participants.

Co-Design Workshop

Fig 8 – Workshop Outline

Fig 9 – Participants writing down their “Pains and Gains”

Fig 10 – Categorising and Clustering

Fig 11 - Discussing the different aspects 10

CommunicationThe interviews left with an enormous number of insights and criteria related to our inquiry. We narrowed all this material down to a few import-ant areas by doing data analyzation, which expo-sed patterns and links between similar or related problems from various different perspectives.

The most prominent area was also the original theme of our project brief and majority of the smaller problems can also be associated with this general area. This problem area is the com-munication between relatives and the municipa-lity. The current system for communication takes too much time for the municipality, making their services more limited. The municipality doesn’t have a digital platform that is being used, relying on Lena to communicate and support her 100 relatives entirely over the phone or in person. The RSP works solely with a paper calendar where next phone calls are being tracked per hand.

Typically, a relative contacts the relative sup-port person per telefone and the RSP sets up a meeting and makes a note in the paper calendar. When a meeting takes place, the RSP first prepa-res by reading the file (on paper) on the relative, to plan out how the meeting is going to be like. During and after the meeting, the RSP makes notes that she can go back to, again on paper. But after each meeting, the previous notes are shredded, so there’s no documentation, for secu-rity reasons.

The information given and needed is generally about the disease as well as where to get sup-port in your municipality. The municipal contacts both highlighted, that relatives are not kept in the loop as they could be and they are not treated as the middleman despite effectively acting as the middleman. There is no structure of how a relative is informed and how often they are being informed currently and communication between relatives and the home-care service is currently viewed as a secondary task.

The result is that they can’t provide as much focus on different aspects of the service. These aspects include things like mental/psychological support for relatives and training of relatives to deal with their caretaking situations. It is an issue that both relatives and the municipality have stated various times. Also, it was voiced in several interviews with different stakeholders that the timing of information is a critical issue, especially in long-term diseases like dementia that goes through several stages and therefore requires a personalized information flow. Information currently is either given out personally by the contact person of the municipality, in the form of brochures and papers or can be gathered by internet searches. However, in our focus group most relatives are over 70 and not digitally edu-cated or interested. Hence, communication is still largely flowing through personal contact during touchpoints of the service. Inefficiencies hereby occur and information can get lost, for example between home care service staff and the relative during the handover.

Reporting of the personalized service was also mentioned as a critical issue. Currently, support offered through the municipality is reported in an analog way in the form of stroke lists for phone calls. The lack of reporting and documentation prevents the communication for additional re-sources needed. It also creates the situation of a bottleneck since information on personalized needs is currently locked in one person.

Analysis and Results –

Insights from the Interviews

11

Individual and Trusted CareAnother area we identified is the lack of in-dividuality as a relative. In other words there isn’t enough flexibility for relatives to get more relevant and efficient support from the service, leading to possible waste of resources that could be allocated more effectively. There is no good safety net for relatives, meaning they have to wait long times for support from the municipality both before and during their journey. In the inter-view with the relative representative of Osby, it was mentioned that the current static, one-pa-ckage-serves-all service shall be replaced with for example a questionnaire system that finds a more personalized support. Also, a pre-care system is needed for relatives as well as patients that have not yet been diagnosed. Currently, the system does not target this.

Trust was something that was also a big issue. Relatives can’t feel confident in the service provi-ded by the municipality if they can’t trust the ser-vice and everything that’s associated with it. One critical issue is care staff of the municipal home care service that is largely fluctuating, absent with a paper-based system that largely entails inefficiencies and insecurities. If absences occur, they are notified by phone and hence, leave the relative feeling stressed and insecure. Trust is a huge factor for a successful and personalized care taking that also affects the well being of the relative and can break easily if one staff member has destroyed it.

Psychological SupportFrom the interview of the stakeholders from Red Cross and the municipal caretaker but also from the relative itself we understand that the perso-nal exchange and psychological support is what is needed most to deal with caretaking of a close

person suffering from a cognitive disease. The mental and psychological aspects of the caretaking are the biggest burden on the relative as confirmed through the interview.

The owners of Enbraplats highlighted that gene-rally, relatives taking care of someone with a cognitive disorder are the ones that need help most. This is partly due to the fact that cognitive disorders and especially dementia run over a long period of time and typically only deteriorate without providing a cure. Being able exchange thoughts and experiences, staying anonymous, reducing shame while receiving the needed information in the appropriate stages of the di-sease are crucial needs of relatives.

The situation in Perstorp specifically seems to offer well appreciated support to relatives as there is much personal contact and psychologi-cal support as well as information offered by the municipality representative Lena. The physical space offered to relatives shows a caring en-vironment that almost resembles a psychologi-cal doctors office. Hence, keeping this personal contact and enhancing opportunities for psycho-logical support is an important insight gathered through the interviews.

Relatives that take care of their family member neither receive acknowledgement nor additional incentives from the side of the municipality. Also, as mentioned in several interviews, the need for training to deal with the cognitive disease is not met currently. At the same time, all interviews revealed that relatives feel a strong motivation to give support to others and provide their own experiences to give their lives a bigger meaning. Especially for cognitive diseases, the need to exchange experiences with others in the same situation is immense.

12

One problem area that was discussed during the workshop was the notion that staff is not relia-ble. They do not have a good handover policy or secure way to inform relatives and high fluctua-tion amongst staff. Being closer to the patients and relatives to provide better, closer and more personalized care, was voiced by the home care representatives and relative caretakers as a desired change to the service. Another relevant aspect is the training and education of staff for the home care service is lacking. In addition, absence of staff creates many administrative challenges but also greatly reduces the quality of caretaking at home.

All these factors create a lack of trust from the relatives’ perspectives, towards the care service provided by the municipality. Work processes are largely paper based and changing schedules are notified via phone, which results in the lack of continuity of staff that reflects negatively on per-sonal care. These points relate to the interview with the Red Cross volunteer who expressed concern about the lack of trust in drivers in Lund, that is perceived by elderly dementia patients being left at wrong locations. All these issues link back to the individual and trusted care section from our interviews, where we identified similari-ties and shared concerns.

The usage of digital media and computers of people in our focus group was also discussed. Both relative caretakers stated that they do not use digital media and wouldn’t consider this as an option in the future.

Workshop Insights

Fig 12 – Workshop Insights

13

The majority of the relatives in our focus group fall into this persona, as confirmed by the relati-ves present at the workshop, as well as the re-presentatives of the municipality, meaning that we have to consider this as a major hurdle if we consider digital design proposals. Although it can be expected that this will be changing with the next generation, this is an important design consideration for us at this stage.

Workshop InsightsAnother important finding are the handover challenges between home care and care in the elderly homes. One participant had openly voiced the distress she experiences currently due to her partner opposing being in an elderly home, which gives her feelings of guilt. The field research hence highlighted the fact that a ma-jor factor for the wellbeing of relative caretakers is the comfort they feel towards the municipal care provided. They are in a lot of stress and frustration already about the changes that they observe in the person they live and have lived

with. They are being exposed to dramatic per-sonality changes, shame stemming from these changes (personal but also with regard to the public). Participants also mentioned that their family members are bored and rather unhappy in elderly homes since they have do not have interest or activities to pursue there.

There seemed to be a mismatch between the municipality view about the service offered and the perception of the relative observing the ser-vice. The relative mentioned the lack of contact, for example to the home care staff in elderly homes, whereas the member of the home care service voiced the legal right for the patients and relatives to have regular meetings about specific needs and interests of patients.

However, the personal support the relatives receive from the contact person Lena was perceived to be highly regarded and extremely helpful. A participant mentioned several times “I could not have made it without Lena”. During conversation it was concluded that the main factor for caretaker’s burden derives from the mental and psychological strain on the relatives and this apparently is being successfully eased by having the personal contact and support through the municipality relative contact per-son. It became obvious that without the perso-nal contact, relatives had waited even longer to reach out for support. In both cases it had been the municipality contact through Lena, that proactively drove relatives to take the next step in understanding how and when to apply for home care service.

The interviews and the workshop suggested that a person living in the situation of taking care of a close relative at home, needs a safe and anonymous platform to connect to others in the same situation, as to not feel alone. Ex-changing personal experiences and releasing stress and frustration needs to be accessible in a way where you do not feel embarrassed about the situation. Unease and anxiety are also very common amongst patients. A EU funded project with dementia was mentioned in the workshop that had tested calming and entertai-ning screens in elderly homes.

From the workshop it was understood that the personal support is of utmost importance to re-latives and should not be replaced by our pro-posed transformation to the service, but rather embraced. Work processes show inefficiencies that can be tackled with a solution in order to free up time for having personal contacts and provide additional offers such as trainings.

The workshop provided us with crucial insights related to our problem areas and helped to narrow down our design focus together with the stakeholders, which reassures us that we are making meaningful design decisions and driving the process in the right direction.

14

Based on the field and desk research conducted in the framework of present project, the following design opportunities have been identified:

01 02

Opportunities Identified

Howcanwecomfortrelativesincaretakingbymakingsurethattheirfamilymembergetsreliable and personalized support through the care program?

This can entail ensuring that the handover to the elderly home is easened, that the family mem-ber is being treated as a unique personality and interests are met during the temporary stay at an elderly home or during day activities, or the handover between home care staff and the relative. The target audience of a new service is the patient and municipality that aims to increase trust and quality of care-taking in order to ease frustrations and worries for relatives.

How can a new service and digital solutions helptomakeworkprocessesofthemunicipali-tycaretakersmoreefficientandpersonalizedinordertofreeuptimeforpersonalizedassistan-ce to relatives?

Field research as well as the co-design workshop suggested that a platform for the municipality care-takers has the potential to streamline work processes and enhance personalization to free up time, for example for personalized assistance to relatives. Such joint platform could offer any staff information about the problems, interests and special care taking needs of a patient and their relative and ensure a secure and complete handover between the home care service and the relative. It could also provide an open forum for feedback and mutual participation while offe-ring anonymity. The main stakeholders addres-sed through this solution are the municipality and the relative. Such platform could also function as an anonymous platform for relatives to share experiences and feel empowered as well as acknowledged. Ideas on generating information hierarchy can be explored to address the need to inform about urgent events for example.

15

The field and desk research provided a thorough understanding of the main factors that influence the well being and caretaking by a relative in a home-care situation. As both the desk research and the interviews revealed, the main concern of the relative is that the cared-for family member is feeling well and their life with the disease is eased. At the same time, the personal contact to the municipality representative is crucial for the well being of the caretaker. Hence, the group sees strong potential to explore digital solutions for improving work processes and flows in the care system that yield to a more personal, close care service offerings through the municipality. The presented findings, the identified design spaces as well as criteria form the basis for idea-tion on a new service design solution.

Description

Our proposal for the redesigned service is based first and foremost on our main stakeholder, the relative, and on the second design opportunity identified earlier: How can a new service help to make work processes of the municipality care-takers more efficient and personalized in order to free up time for personalized assistance to relatives?

Proposal of

Service Re-DesignAnonymity and safety: The service must consider feelings of embar-rassment, shame and guilt on the side of the care taking relative and has to therefore provide for anonymity and safety of privacy.

Personal and close care: A new service design shall enhance the perso-nalization of care and “close care” by taking note of individual interests and needs of both the patient and the care-taking relative and by tack-ling the most pressing need for psychological support of a relative.

Proactive and encouraging: A new service shall function similarly to the personal assistance from the responsible contact person from the municipality: suggesting next steps proactively, encouraging to reach out for help.

Considering digital experience of end user: The new service needs to consider the specific digital behaviour of the target au-dience.

Comprehensive and informative: The new service shall provide a comprehensive overview of what is offered by the municipality or state to the relative and may function as a tool to report and document for the municipality side as well the relative.

Trusted: The new service shall enhance the feeling of trust on the side of the relative towards care-ta-king services provided by the municipality. Trust is created by enhanced communication and documentation during the touchpoints of the service.

Acknowlodgement and Empowering: A new solution shall create feelings of empower-ment and acknowledgment on the side of the care-taking relative.

Design Criteria

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We want to emphasize that the most important aspect is to provide better care for the relative. Based on the findings from our design pro-cess, the best way to provide a better level of care for the relative is through the municipality, more specifically the personal support offered through the RSP. The resulting changes and additions consist of digital proposals that ad-dress the communication between the relatives and the municipalities´ RSP, as well as another touchpoint that focuses on what happens befo-re the pre-care phase.

Based on the field and desk research a propo-sal for a redesigned service called Stödet was developed to help tackle the existing issues of communication and organising between relati-ves of patient and the municipality itself.

Stödet is a service that aims to support the communication line between municipality and relatives, while also providing a vital administ-rative tool to enhance the municipality workers workflow in order to provide a better service to their users. Stödet is a cross-device platform that is designed to be used on computers, tablets and smartphones, where several diffe-rent features are incorporated in the design. We have involved both the RSP and the relatives in the design process, with the aim of providing a service that is a product of the designers, mu-nicipality of Perstorp and the relatives involved with the RSP.

As previously mentioned, part of the proposal is a touchpoint called “PRE”, which is seen in Figure 13. This is an additional phase that is supposed to get relatives to be able to better prepare for the healthcare service leading into the pre-care phase. This touchpoint needs further development at this point, but the value it would provide is supportive to the service as

a whole. By providing extra information advice and overview in the form of a letter each person turning 60 would receive, the potential future care-taking relative is aware of the steps and service offered in their upcoming journey and this will have a positive influence on the expe-rience, in terms of trust and understanding. We understand building trust early on is important and having transparency is a big part of that. The additional knowledge enables relatives to seek further information and support at the right time and early enough, rather than having to catch up on what they don’t know and what lies ahead.

The next addition to the service is the digital platform seen in Figure 14, which is used solely by the RSP. This is something that doesn’t exist at this point, meaning the RSP is working manually using notes and relying on memory, which is in itself inefficient and prone to result in information being lost or support being delay-ed. The RSP in Perstorp deals with as many as 100 relatives per month, a huge task that can benefit from the use of a digital platform. The platform itself will help the RSP with organiza-tion, follow-up information, prioritization and ultimately free up time which can be used to provide more care at the current level. The platform works in conjunction with the next proposed addition, which is an application for smartphones and tablets. The application is used by the relative and provides information on their current needs and wellbeing. The application sends and receives information to and from the platform. This information is being visualized accordingly on both the platform and the application which provides the stakeholders with knowledge, effectively leading to more in-dividual, close support. As seen in Figure 13, all the aspects of our service proposal can be seen throughout multiple phases of the service.

How can a new

service help to make

work processes of

the municipality

caretakers more

efficient and personalized in

order to free up

time for personalized

assistance to

relatives?

17

The proposed redesigned service aims to incor-porate the key elements of the service to provide the personal support offered by the municipality worker and simultaneously address the identified shortcomings. One such shortcoming is the lack of time for personalized psychological support of relatives due to inefficient work processes.

Our proposition is a more comprehensive ser-vice based on a cross-device platform that will serve the RSP of a municipality and the relatives. Stödet aims to be the core, the safety net and means of communication for this service.Stödet exists as a digital computer/web appli-

cation on the municipalities end, and a phone/tablet application on the user’s end.

The relative uses the application to:• Provide a daily/weekly report of well-being

and emotional levels, depending on their needs and situation

• Make appointments with RSP• Direct communication with RSP• Find valuable information specific to their

situation• Reflect on own situation• Reach out for help earlier and use it as a

safety net

The RSP uses the computer/web application to:• Planning, organizing, scheduling personal

support with relatives• View and follow status and well being of

relatives• Direct communication with relatives• Update journal of relatives/note taking• Backtracking• Connecting relatives depending on their

status and situation• Documentation and reporting of entire work

process.

PRE PRE-CARE

Relative Only Relative + Hemtjänst Hemtjänst + Elderly Home Cycle

AFTER-CAREHOME-CARE

Line of Interaction

Line of Visibility

Line of Internal Interaction

Evidence

Frontstage

Employee Action

Customer Journey

Backstage Actions

Support Processes

Technology

Chosen Locations Phone

Website

Relative Support Centre Platform/App

Phone

Relative Support Centre Platform & App

Phone


Phone


Phone


Phone

Learn About Service & Situation Plan/Prepare Ahead

Call/Meet Seek/Receive Info

Call/Meet Plan/Prepare Receive Info

Get Intro to App

Communicate With Elderly Home Send/Receive via App

Meet/Call

First use of App Send/Receive via App

Meet/Call

Send/Receive via App Meet/Call

Add Relative/Patient to Platform

Receive/Make Phone Calls Send/Receive via App Receive Additional Info

Phone Support Meet

Give More Detailed Info

Phone Support/Meet Extra Support

Give More Detailed Info App Introduction

Phone Support Meet

Extra Support

Phone Support Meet

Phone Support Meet

Phone support Meet

Use Platform Prioritization

Decision-Making Send/Receive via Platform

Planned Extra Info

Automatic Info Distribution

App

Technology Digital Plaform

Extra SupportExtra Support Extra Support Extra Support

Use Platform Send/Receive via Platform

Data Being Processed





App

Digital Plaform


App

Digital Plaform


App

Digital Plaform


App

Digital Plaform


Figure 13: Blueprint of the new Service

18

While many different problems had been iden-tified throughout the field research, it is especi-ally the provision of a safety net and reaching relatives earlier with support services as well as the missing documentation of processes that are tackled with the redesign. The RSP today deals with 100 relatives a month without using any of-ficial documentation besides the paper calendar and a paper tally sheet. Subsequently, the value statement for both the relative as well as the municipality are being outlined.

Value added for RelativesThe redesign aims at enhancing a continuous bond and communication between the relative and the municipalities relative support and her-eby strengthen the psychological support as well creating a safety net for relatives by identifying needs much earlier. The early touchpoints that are introduced in the redesigned service shall inform potential users of the service before the need even arises so the contact to the support office could be established earlier and awaren-ess can be created for the service.

Once the relative has entered the service journey by establishing contact to the relative support office, the link is being strengthened by crea-ting a platform profile and introducing the app for either phone or Ipad. By providing a tool to observe the own situation in a continuous way aims to tackle the issue of the lack of a safety net for relatives for when help is needed urgent-ly. Having a close contact with the support office may tackle gaps and needs much faster. In ad-

dition, the app aims to enhance the psychologi-cal support felt by a relative for being connected to the support worker and by being heard and acknowledged.

Both field and desk research proved that the psychological component of supporting relati-ves, by listening, providing acknowledgement and confirmation, advising next steps, teaching about the disease and reducing feelings of disconnectedness and loneliness by connecting with others, is what relatives need most since the mental and psychological aspects of the care-taking are the biggest burden. The suggested redesign of the service aims to enhance time spend by the municipality to personally provi-de this psychological support, something that cannot be given only via digital tools. By freeing up time for personal service, the support relati-ves receive is hoped to improve their caretaker burden.

The apps as well as the platform also provide anonymous tools to exchange thoughts with the caretaker from the municipality, hereby reducing shame while receiving the needed information in the appropriate stages of the disease. The platform will also help to tackle specific need for getting relatives into contact with each other based on the stages and situations their are in, as the municipal caretaker can better estimate their needs due to the insights gathered through the app. The redesign will hence support offering more close and personalized care to relatives.

Value Statement of Proposed Redesigned Service

19

Value added for theMunicipality

The proposed new service with the platform as the central tool aims to free up time for a more personalized support of relatives by making work processes more efficient. The platform provides an overall view of the relative support person’s work. By that, time is reduced for repeating the situation orally by the relative during meetings. Also, handover with a new support person will be made easier. The current situation created a bot-tleneck between the support person employed by the municipality and the relatives with a high risk that support would stop if the employee was sick or out of office on a longer term. Such tool minimizes that risk and the bottleneck situation.

In addition, the tool will help reporting about the amount of work that the municipal contact person is doing and the data can be used for analysis of specific needs of relatives to further improve services and add potentially needed re-sources. User research showed that the work of both the municipal support employee as well as the relatives themselves are not being acknow-ledged enough.

The platform suggested provides the potential to be aligned with Hemtjänst, with which different communication issues were identified throug-hout user research. This option has not been explored in the framework of this project but entails opportunities that may be investigated, prototyped and tested in a later stage.

With the proposed solution, a safety net shall be created for the relative so that help is being provided earlier before a home-care situation escalates and the relative has to wait for sup-port to be delivered in the form of hemtjänst. The continuous reporting of the mental state of the relative gives both the relative an opportunity to reflect upon their situation but also for the muni-cipality to stay closely connected to the relative, track their situation and intervene much earlier with a more targeted service. The tool will also prevent the relatives to have to recapitulate their situation to the municipal support person seve-ral times, which oftentimes happens nowadays and leaves the impression of a non-personalized service. Also, having a clear overview of previous meetings will help to provide the best next steps for the relative.

With the proposed solution, a safety net shall be created for the relative so that help is being provided earlier before a home- care situation escalates (...).

20

The Platform Figure 14 represents the landing page for the RSP which provides an overview of all relatives she’s in contact with as well as a calendar. From there, individual profiles and new messages can be ac-cessed, an own schedule created and an overview of the next weeks and months gathered.

Figure 15 shows the profile screen of a relative, where the RSP can get an overall view of who the relative. Every time the relative sends an update over the phone app, the RSP gets a notifications and the update is registered in the relatives profi-le. She can also make notes to a specific meeting, or communicate directly with a relative, sending them important informa-tion for example.

Visualizations of the

Redesigned Service

1. Patients in need of more help. Clickable profiles that has a co lored dot for a glanceable feedback on the status of a relative.

2. Patients in need of less help.

3. Search field for finding specific relatives.

4. Notifications/messages from relatives.

5. Calendar.

6. Schedule for the marked day.

7. Add something to your schedule

1

2

34

5

6

7

Figure 14: Landing screen for Lena

8. Name, picture, name of patient, previous meeting and next meeting date.

9. Quick biography of the relative, editable.

10. Previous meeting. Click to see previous notes.

11. New note/meeting.

12. Data of the wellbeing of the relative.

13. Communication with the relative.

8

9

10

11

13

12

Figure 15: Profile of the relative

21

The Mobile and

Tablet Application

Figure 16: Landing screen for Lena

Figure 17: Profile of the relative

Mobile ApplicationThe application for the relative has a simple structure and design. The user has different options to choose from on the main screen, starting with the status update, with four questions which can be answered with yes or no. Subsequently, there is a screen to add notes or a voice message for the RSP. After submitting, the last screen shows a confirmation of the status update and reminds of the next steps, for example the next appointment.

Another option on the main screen is

to take a look in the diary for the last appointments, status updates and notes, to self-reflect the past days or weeks. Finally, the relative can call the RSP directly or send a text message over the app from the main screen.

Screen 1: Menu Screen.Screen 2: Register your well being, binary yes or no questions.Screen 3: Posibility to add notes or a voice message to the status. Screen 4: Submittal screen, receipt of successful reporting of data to RSP.Screen 5: Sample of how communi-cation via the app with RSP looks like.

Tablet ApplicationThere are two versions of the relative app, one for the Phone and one for the Tablet. In general they include the same functions, but the Tablet app has an-other option on the main screen to get more information about the process, the history, next steps and about the disea-se of the person that the relative takes care of. This could be a way for the RSP to send more information to the relative at the appropriate time.

1 2 3 4 5

22

User Testing

We conducted the first user test with the RSP over the phone. At that time, the interactive prototype had not been completed but the aim was to get basic feedback about the concept we developed before continuing. Based on a series of images from the interfaces, the purpose of each function was explained.

The interface was supposed to work as a tool for her to get consistent updates from the relatives on how they were doing as well as give her an overview of her work. Feedback included that we pinpointed the biggest issue she is currently facing which is her lack of overview and the fact that she keeps everything in her head. Whilst the first user test gave us the confirmation that we were heading in the right direction we realized we had to test an interactive prototype as well in order to get meaningful feedback.

After developing interactive prototypes, we tes-ted them with the RSP in Perstorp. It was con-ducted by letting her interact with it without us interfering and then recording and taking notes of her reactions and thoughts about it. If she had any question we would answer them and if she had any constructive feedback on things existing or missing, we would take notes of it. After she had tried out the platform and the app, we recei-ved feedback:

Interestingly, she did not want to have much information about the patient or partner of the care-taking relative since this is more sensitive and complicated to have. In a next iteration of the prototype, these elements were removed and replaced by for example another question on whether the relative feels isolated. Also, a GDPR approval screen at the start of the app has been included to account for data security.

Overall, the test yielded good feedback and critique. The RSP was mostly pleased with it and mentioned “I would definitely use it”. We managed to pinpoint her biggest needs which is the cur-rent lack of overview and the fact that she is not allowed to save notes. Having a more structured way of working would in the end help out the re-lative more in the sense that the service provided improved.

In a next step, the relatives that were interviewed should have been presented the app and tested with. Unfortunately, this was not possible due to time issues and availabilities. The RSP recommen-ded having an iPad at the relative support center to explain the relatives on how to use it in order to onboard relatives. Ideally, tests with relatives of different ages and care-taking situations need to test the app for further iterations and improve-ments.

“This platform allows me to have an imme-

diate overview of what I need to do and how

to advise the relative in the best way.”

“Some relatives have to re-tell me their

situation and story and this can make some

upset or leave them to feel as if I do not care

and it costs extra time that I could use for

providing them with better information or

psychological support. But in fact it is just

impossible to keep everything in my head.”

“I currently use a paper calendar where I

book future calls that I need to do and I re-

port them just in a paper folder but my notes

can only be understood by myself.”

“This tool would help me greatly to spend

more time on what matters most: the psy-

chological support to the relative, listening

to their situation and offering the best next steps that will help them to get through very

difficult times. Having it all on paper is diffi-

cult when advising over 100 relatives”.

“It is very easy to use, I like that it is prioriti-

zed according to who needs help most. I like

the look and feel of it, it is very simple.”

“I also recommend including an GDPR ap-

proval to store personal information on the

relative.”

“I like the simple yes/no questions for

self-tracking the mood of a relative. This is

not complicating things unnecessarily and

reduced reflection time.”

23

Implementation

Implementing this solution in the stakeholders’ day to day lives could significantly improve the workflow on both parts of the service: the service provider and the receiver of the service. While there are several important factors that it brings with it, some of the key aspects of our proposal involve:

• Systematic way of dealing with administrative tasks, such as scheduling and planning.

• Better communication lines between RSP and relatives.

• Holistic view of the service that is being pro-vided.

• A view of each individual, providing an op-portunity to provide a more person-centered care, or “close care”.

Implications of implementing StödetWhile moving towards a digital multi-device platform brings many good features, it can also be a daunting process for the typical users of the service. The digitalisation of the workflow for the RSP is a huge advantage, particularly consi-dering the RSP´s amount of workflow and how many relatives are being dealt with on a monthly basis. It was thoroughly expressed throughout the field research and co-design process how much of the information exists only in one individual‘s mind, which can lead to huge disadvantages in meetings and the progression of the relative. The proposed solution can help solving this bottle-neck situation as information can be transferred to another worker or a temporary replacement in the future.

Although the proposed solution can be seen as a huge advantage on the municipality side, the focus in this proposal lies not on the municipality, but on the relatives themselves (see Figure 18). While designing a better workflow for the per-son responsible for these relatives will lead to an improved system in general, it does not directly affect the relatives.

Therefore much of the focus in implementation will need to lie on the user end of the service, the application for mobile and tablet. From our research, we discovered that even though all re-latives interviewed have mobile phones and com-puters, they do not in fact want to use any type of technology. However, our solution would require some technical engagement of the users. While this is not a sustainable choice initially, it can lead to an improved knowledge in using information technology. To support the implementation of a digital solution, the apps have been designed in a very simple style, with large buttons, as little in-formation as needed and simple yes/no choices for tracking the relative´s situation.

The reluctant use of technology problem can also be tackled through the help of RSP herself. She suggests workshops where relatives can come into her office in person, and be guided through using the application. Another idea that evolved through our co-design approach is to provide a stationary Tablet in the RSP office in or-der for relatives to come by and log their situation or access information there while being able to briefly speak in person to the RSP.

24

(..) Therefore much of the focus in

implementation

will need to lie on

the user end of the

service, the appli-cation for mobile

and tablet.

Figure 18: Business Model Canvas

We believe that a

bigger involvement

of the relatives in the

design process is

required for the

project to go further, as they are the

experts on their own

life and experiences.

Critical Reflections and Next steps

While the platform was developed in close contact with the RSP of Perstorp and the relatives of patients enrolled in the Munici-pal Health Care programme, there are many aspects that need to be ironed out before Stödet could be operating. We have used a method called Minimum Viable Product when designing the platform, meaning that we wanted core functionality that targets the lar-gest issues first, and then it can be built upon. From here, more user testing on the relatives is required, to be able to determine the best approach of recording data and contacting the RSP, where suggestions ranging from physical computing platforms to voice detec-tion technology are amongst suggestions of alternatives. While these concepts never left the sketching stage, it would be interesting to develop physical prototypes and see if they could benefit the service in the same way or better than the current mobile and tablet application. We believe that a bigger involve-ment of the relatives in the design process is required for the project to go further, as they are the experts on their own life and expe-riences.

Technical ChallengesDeveloping a functional initial platform for the RSP and the smart phone application will require medium technical experience. The current project team covers about 50% of the required skills to develop both the app

and the platform, whereas the development of the back-end of the RSP platform and the smart phone/tablet application requi-re other professionals. The biggest issue with development is recruiting data security specialists that can ensure that the system is encrypted and privacy of data is secured and aligning it to the municipal requirements.

While this project focuses on a rough estima-te of about 100 people and one RSP, it could be interesting to see how this solution could not only help the municipality of Perstorp, but other municipalities in Sweden.

Economical benefitsAs previously mentioned in this report, relati-ve caretakers saves the Swedish society 177 billion Swedish kronor every year (NKA, 2016). This service does not aim to generate any re-venue or to save money directly, but to relie-ve pressure and stress from both the relatives and the RSP. By maintaining and improving the wellbeing of these individuals, we keep one of the largest unrecognized workforces intact. The resources needed for our service proposal would be insignificant in regard to how much the Swedish society saves yearly.

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Nationellt kompetenscentrum anhöriga (2016) Fakta om anhöriga. Retrieved from https://www.anhoriga.se/stod-och-kunskap/fak-ta-om-anhorig/

Nationellt kompetenscentrum anhöriga (2016) Coat, anhörigsamtal. Retrieved from http://www.anhoriga.se/coat

Socialstyrelsen (2012) Anhöriga som ger omsorg till närstående – omfattning och konsekvenser. Retrieved from https://www.social-styrelsen.se/publikationer2012/2012-8-15 Szebehely, M., Ulmanen, P., & Sand, A. B. (2014). Att ge omsorg mitt i livet: hur påverkar det arbete och försörjning? Stockholms Univer-sitet

Socialstyrelsen (2013) Stöd till personer som vårdar eller stödjer närstående – Lägesbeskrivning 2013. Retrieved from https://www.socialstyrelsen.se/publikationer2013/2013-12-6

Riksrevisionen (2014):”Stöd till anhöriga som vårdar närstående”, Retrieved from https://www.socialstyrelsen.se/Lists/Artikelkata-log/Attachments/19605/2014-12-6.pdf

Riksrevisionen (2017), Resultat, Retrieved from https://www.riksre-visionen.se/rapporter/granskningsrapporter/2014/stodet-till-an-horiga-omsorgsgivare/resultat.html

Anna-Mi Wendel (2015) Ta hand om den som vårdar närstående. Retrieved from https://www.lu.se/article/ta-hand-om-den-som-vardar-narstaende

References

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