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In recent years, healthcare has been shifting toward a people-centred vision. Within the intersection connecting service design and healthcare innovation, co-design communication tools are increasingly being used to bring the voice of patients and their families into healthcare co-creation activities. Existing documented use of such tools primarily focuses on empathy and how designers derive inspiration from participants’ materials, while little draws on the actual design process and how design attributes can effectively support patients and their families in generating and expressing their dreams. From this perspective, this thesis first analyses existing tools that aim to elicit participants’ self-expression and evoke their future-oriented thinking, which strategies for designing a tool that supports individuals in expressing their dreams are identified with a particular focus on materiality and visuality. Taking a research through design approach, this thesis enters into the extremely challenging rare disease context to design a toolkit to help family caregivers of people with ALS identify and convey their dreams for life after diagnosis. Through observations of participants’ interaction during the prototyping process, this study further demonstrates that considering both the vulnerability and intelligence of patients (families) in the design of tangible toolkits effectively breaks participants’ habitual perceptions and brings them to an imaginative space towards the future. In doing so, co-design tools commonly used in service design can be better adapted to the healthcare context. Additionally, the thesis provides family caregivers’ questions, insights, and ideas about ALS healthcare services, thereby informing the future ALS healthcare innovation.

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Att vårda en närstående med en kronisk sjukdom känns ofta som en självklarhet, men hur detta påverkar en själv som person och det liv som är utstakat är inte lika självklart. Syftet med studien var att undersöka närståendes upplevelser av att vara vårdgivare till en person med amyotrofisk lateralskleros (ALS). Studien är en litteraturstudie och är baserad på tio vetenskapliga artiklar. Resultatet av vår studie har identifierats till tre stycken teman: Psykisk påverkan, belastning och QoL. Det är en del av sjuksköterskans arbete att även se de närstående och hur dessa påverkas, inte bara använda sig av de som en avlastning i omvårdnadsarbetet. / Caring for a relative with a chronic illness often feel like an obvious thing, but how this affects oneself as a person and the life that is marked out is not as obvious. The purpose of this study was to examine closely relative’s experiences of being a caregiver for a person with amyotrophic lateral sclerosis (ALS). The study is a literature review and is based on ten articles. The results of our studie have identified three categories: Psychological stress, burden and QoL. It is part of the nursing profession to also see the family and how they are affected, not just use those as a relief in nursing.

Detta är en litteraturstudie som beskriver hur ALS patienter upplever sin sjukdom och livskvalitet. / This is a literature review which describe how the ALS patients experience their desease and quality of life

Amyotrofisk lateral skleros klassas som en neurologisk sjukdom där de motoriska nervcellerna i hjärnan, hjärnstammen och ryggmärgens yttre del degenererar. Någon kurativ behandling för patienter med ALS finns inte i nuläget. Behandlingen inriktas därför på att möta behoven som patienterna utvecklar under det snabba sjukdomsförloppet för att ge den bästa palliativa vården. Syftet med vår litteraturstudie var att undersöka vilka omvårdnadsbehov en patient med ALS och deras vårdgivare har. Resultatet har tematiserats efter patienterna och vårdgivarnas fysiska, psykiska, existentiella och social behov. De olika behoven varierade, beroende på var i sjukdomsförloppet patienterna befann sig. Något som även påverkade vårdgivarna. / Amyotrophic lateral sclerosis is a progressive neurodegenerative disease that causes the motor neurons in the brain, brainstem and the outer areas of the spinal cord to degenerate.Any treatment or cure for patients with ALS is not yet discovered. The treatment is therefore concentrated onto meeting the patient’s different needs, during the fast progression of the disease, to give the best palliative care. The purpose of this literature study is to investigate what kind of care a patient with ALS and its caregiver have. The result has been thematisized after the patients and caregivers physical, psychological, existential and social needs. The different needs varied, depending on in what present stage of the disease the patient was in. This did also affect the caregivers.

Most healthy young people can use a visual P300-based speller in a controlled laboratory setting1. Previous studies in people with severe disabilities have been limited to relatively small populations [2,3,4] or have been in populations with a variety of different disorders [5,6]. Here, we evaluate the performance of a larger population of people severely disabled by ALS. We sought to identify factors that affect performance and methods for improving performance. The study is part of a program that is providing the P300 speller for long-term independent home use.

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Severe neuromuscular disorders can produce locked-in syndrome (LIS), a loss of nearly all voluntary muscle control. A brain-computer interface (BCI) using the P300 event-related potential provides communication that does not depend on neuromuscular activity and can be useful for those with LIS. Currently, there is no way of determining the effectiveness of P300-based BCIs without testing a person's performance multiple times. Additionally, P300 responses in BCI tasks may not resemble the typical P300 response. I sought to clarify the relationship between the P300 response and BCI task parameters and examine the possibility of a predictive relationship between traditional oddball tasks and BCI performance. Both waveform and component analysis have revealed several task-dependent aspects of brain activity that show significant correlation with the user's performance. These components may provide a fast and reliable metric to indicate whether the BCI system will work for a given individual.