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Everyday activities outside the home are a struggle: Narratives from two persons with acquired brain injury
Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.ORCID iD: 0000-0002-1472-876x
Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.ORCID iD: 0000-0002-0341-6197
Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
2018 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014Article in journal (Refereed) Epub ahead of print
Abstract [en]

BACKGROUND

Participation restriction is a common consequence after acquired brain injury (ABI).

AIM

To explore and identify problematic situations in everyday activities outside the home for persons with acquired brain injury.MATERIAL AND METHODTwo persons of working age with ABI were included. Data were generated through repeated semi-structured interviews and participant observations. Narrative analysis was used to capture ongoing processes related to problematic situations during engagement in everyday activities outside the home.

RESULTS

The narratives reflect how places, everyday activities and social relations were closely connected and influenced engagement in everyday activities outside the home. The participants visited fewer places and performed more of their everyday activities alone in their homes after the injury compared to before. They were struggling to create meaning in their lives and trying to reformulate their identity. Problematic situations often occurred outside the home as a result of unexpected events. The narratives indicate a struggle to find new routines to handle challenging situations.

CONCLUSIONS

The results provide an understanding of how problematic situations occurred and were managed in different ways. By observing everyday situations professionals can gain access to how persons with ABI act in and reflect upon problematic situations which can eventually improve the design of individually tailored interventions.

Place, publisher, year, edition, pages
Taylor & Francis, 2018.
National Category
Occupational Therapy
Research subject
Occupational therapy
Identifiers
URN: urn:nbn:se:ltu:diva-71177DOI: 10.1080/11038128.2018.1495762PubMedID: 30301397Scopus ID: 2-s2.0-85054697524OAI: oai:DiVA.org:ltu-71177DiVA, id: diva2:1255398
Available from: 2018-10-12 Created: 2018-10-12 Last updated: 2019-01-04
In thesis
1. Möjlighet till aktivitet och delaktighet utanför hemmet för personer med förvärvad hjärnskada
Open this publication in new window or tab >>Möjlighet till aktivitet och delaktighet utanför hemmet för personer med förvärvad hjärnskada
2019 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[en]
Possibilities for activity and participitation outside home for persons with acquired brain injury
Abstract [sv]

Det övergripande syftet med denna avhandling var att öka kunskapen om möjlighet till aktivitet och delaktighet utanför hemmet för personer i yrkesverksam ålder med förvärvad hjärnskada (FHS).

Studie I syftade till att utforska och beskriva hur personer med FHS erfar engagemang i aktiviteter utanför hemmet. Intervjuer genomfördes med åtta deltagare och data analyserades genom konstant komparativ metod. Resultatet visade att svårigheter att bearbeta intryck, fatigue, förberedelse och upplevda risker var avgörande för deras begräsningar av engagemang i aktiveter. De använde nya strategier för att möjliggöra engagemang i aktiviteter med olika konsekvenser för deras liv. Studie II syftade till att utforska och identifiera problematiska situationer relaterat till aktiviteter utanför hemmet för personer med FHS. Upprepade intervjuer och deltagande observationer genomfördes med två deltagare och genererade data som analyserades med narrativ metod. Deltagarnas berättelser speglar hur det var en ständig kamp att försöka hantera oförutsedda händelser och kontrollera olika situationer de ställdes inför när de engagerade sig i aktiviteter utanför hemmet. Vidare, hur de dragit sig tillbaka från olika platser vilket medförde att deras sociala liv begränsats och att fler aktiviteter utfördes ensam och i hemmet efter skadan. Studie III syftade till att beskriva och jämföra upplevd delaktighet på platser utanför hemmet hos personer med stroke samt relationen mellan det totalt antal platser som besöktes, funktionshindrets svårighetsgrad och sociodemografisk data. Intervjuer genomfördes med sextiotre deltagare med stroke utifrån instrumentet ACT-OUT. Data analyserades med deskriptiv statistik, icke parametriska test, ANOVA och General Linear Model (GLM). Resultatet visade att gruppen med god återhämtning besökte i genomsnitt flest antal platser följt av dem med medelsvårt och svårt funktionshinder och skillnaden mellan grupperna vara signifikant. Skillnader i besökta platser var framförallt relaterat till platser för sociala, kulturella och andliga aktiviteter samt platser för rekreation och fysisk aktivitet. Oavsett funktionhindrets svårighetsgrad önskade deltagarna besöka platser i framtiden som de förnärvarande inte besökte. Funktionshindrets svårighetsgrad och bilkörning var signifikant associerade med det totala antalet besökta platser för aktiviteter utanför hemmet. Studie IV syftade till att utforska mönster av delaktighet på platser för aktiviteter utanför hemmet och om dessa mönster var relaterade till funktionshindrets svårighetsgrad och faktorer i miljön. Intervjuer genomfördes med samma deltagare och instrument som i studie III och analyserades med deskriptiv statistik, icke parametriska test och tvåstegs klusteranalys. Av analysen framkom fem mönster av delaktighet innehållande fyra möjliggörande och hindrande aspekter; upplevt avstånd till platsen, hur frekvent platsen besöktes och hur familjär platsen samt vägen till platsen var. Resultatet visade att det endast fanns signifikanta skillnader mellan mönstren när det gällde transport till och från platsen och socialt stöd.

Sammanfattningsvis bidrar denna avhandling med kunskap om de mångfacetterade ständigt föränderliga utmaningar och problematiska situationer som personer med FHS erfar vid engagemang i aktiviteter utanför hemmet. Vidare, om strategier i aktivitet som möjliggör att personer med FHS kan återuppta och/eller bibehålla aktiviteter utanför hemmet. Avhandlingen bidrar även med kunskap om samband och mönster som påverkar upplevd delaktighet på platser för aktiviteter utanför hemmet, vilket är av betydelse för att förstå relationen mellan aktiviteter och platser. För att utveckla utformningen av rehabiliteringsinsatser som stärker möjlighet till aktivitet och delaktighet efter FHS behöver såväl aktiviteter som platser utanför hemmet samt aspekter som påverkar relationer dem emellan beaktas.

Abstract [en]

The overall aim of this thesis was to investigate the possibility for activity and participation outside the home for people of working age with acquired brain injury(ABI). Study I aimed to explore and describe how people with ABI experience engagement in activities outside the home. Interviews were conducted with eight participants and data were analyzed using constant comparative methodology. The results showed that difficulties in processing impressions, fatigue, preparation and perceived risks were crucial to participants´ reduced engagement in activities. People with ABI used new strategies to enable engagement in activities that had different consequences for their lives. Study II aimed to explore and identify problematic situations related to everyday activities outside the home for persons with ABI. Repeated interviews and participant observations were conducted with two participants, and the generated data were analyzed using narrative method. The participants' stories reflected how they constantly struggled to handle unexpected events and control the different situations they faced when engaging in activities outside the home. Furthermore, the narratives expressed how they withdrew from different places, which meant that their social lives were diminished, and more activities were performed alone and at home after their injury. Study III aimed to describe and compare the perceived participation in places for activities outside the home for people with stroke and the relationship between the total number of places visited, the severity of disability and sociodemographic data. Interviews were conducted with sixty-three participants with stroke based on the ACT-OUT instrument. Data were analysed using descriptive statistics, non-parametric tests, ANOVA and General Linear Model (GLM). The results showed that the good recovery group visited the most number of places on average followed by those with moderate and severe disabilities, and the difference between the groups was significant. Differences in visited places were primarily related to places for social, cultural and spiritual activities, as well as places for recreational and physical activities. Regardless of the severity of disability, participants wanted to visit places in the future that they did not visit in the present. The severity of disability and driving a car were significantly associated with the total number of visited places for activities outside the home. Study IV aimed to explore patterns of participation in places for activities outside the home and if these patterns were related to severity of disability and environmental factors. Interviews were conducted with the same participants and instruments as in Study III and analysed using descriptive statistics, non-parametric tests and a two-stage cluster analysis. The analysis revealed five patterns of participation containing four facilitating and hindering aspects: the perceived distance to the place, how frequently the place was visited, the familiarity of the place and the familiarity of the way to the place. The results showed that there were only significant differences between the patterns in terms of transportation to and from the place and social support.

In summary, this thesis contributes knowledge of the multifaceted, ever-changing challenges and problematic situations experienced by people with ABI when they are engaged in activities outside the home, as well as strategies that enable people with ABI to resume and/or maintain activities outside the home. This thesis also contributes knowledge regarding relationships and patterns that affect experienced participation in places for activities outside the home, which is important for understanding the relationship between activities and places. To develop the design of rehabilitation interventions that strengthen the possibility of activity and participation after ABI, both activities and places outside the home need to be considered as well as aspects influencing the relationships between them.

 

Place, publisher, year, edition, pages
Luleå: Luleå tekniska universitet, 2019. p. 88
Series
Doctoral thesis / Luleå University of Technology 1 jan 1997 → …, ISSN 1402-1544
Keywords
acquired brain injury, stroke, occupational therapy, activity, participation, public space, Förvärvad hjärnskada, stroke, arbetsterapi, aktivitet, delaktighet, offentliga miljöer
National Category
Medical and Health Sciences Occupational Therapy
Research subject
Occupational therapy
Identifiers
urn:nbn:se:ltu:diva-72456 (URN)978-91-7790-294-2 (ISBN)978-91-7790-295-9 (ISBN)
Public defence
2019-02-22, D770, Luleå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2019-01-07 Created: 2019-01-04 Last updated: 2019-02-14Bibliographically approved

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Olofsson, AlexandraLarsson-Lund, MariaNyman, Anneli

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