Olika Röster - Olika Berättelser : Kommunikation, identitet och mening bland människor med förvärvad hjärnskada

The main purpose of the dissertation is to understand meaning-making practices used by people suffering from acquired brain damage with severe physical and communicative disabilities, in order to create and sustain their identity and personhood in relation to other people. The study emanates from the idea that identity and personhood, also in relation to disability, are created/sustained in ongoing interaction between people in everyday situations, and that the ability to narrate is central to such a creation of identity. Therefore, it is of particular interest to try to understand what communicative and storytelling abilities/possibilities people with severe acquired brain damage have in presenting their identity. The study is ethnographic and based upon a year-long field study of participant observations at a day centre for people with acquired brain damage. Gathered data consist of written field notes, informal interviews conducted with both participants and personnel and approximately 70 hours of video data. The study shows how an identity as ‘severely disabled’ is created in the co-created storytelling between participants and personnel and that this identity seems to mean that one is dependent upon others to get along in everyday life at least if one listens only to spoken stories. Yet the study also shows that there exist different opinions about what this identity as ‘severely disabled’ could mean that there is a wish among the participants to be able to present a desirable identity as “normal”, and that such an identity comes to mean to be independent and self-determined. Normality, however, must be understood in relation to surrounding society (and the grand cultural narratives that surround us). Thus the study shows that normality in relation to severe disabilities is almost impossible to achieve because normality in relation to illness/disease/body contains the hope of a cure or an improvement. The participants in this study, however, have all been labelled as incurable – there is no hope of such a cure or improvement. That, on the other hand, does not mean that the participants do not try to tell such stories anyway in their quest to achieve this desirable identity. However, in order to hear this story we need to listen to stories that usually remain untold. A palpable hierarchy between different modes of language use was identified, where verbal/spoken language is supreme, resulting in the disabled participants not being perceived as competent interactors/communicators due to their difficulties in using verbal communication. Hence their ways of creating/telling stories, through embodiment and enactment, are not recognised as valid ways to create/tell stories; this is discussed in relation to both practical implications for health care settings as well as for further narrative research.Avhandlingens huvudsyfte är att förstå meningsskapande praktiker som personer som drabbats av förvärvad hjärnskada med grava såväl fysiska som kommunikativa funktionshinder använder för att skapa och upprätthålla sin identitet och sitt personskap i relation till andra människor. Studien utgår ifrån att identitet och personskap, också i relation till funktionshinder, är något som skapas och upprätthålls i det pågående samspelet mellan människor i vardagliga situationer och att förmågan att berätta är central för detta identitetsskapande. Därför är det av särskilt intresse att försöka förstå vilka möjligheter personer med grava förvärvade hjärnskador har när det gäller att kommunicera och använda berättandet som ett sätt att presentera sin identitet. Studien är etnografisk och baseras på ett årslångt fältarbete bestående av deltagande observationer på ett dagcenter för människor med förvärvade hjärnskador. Insamlade data består av fältanteckningar, informella intervjuer med både deltagare och personal och ca 70 timmar videomaterial. Studien visar hur en identitet som ’gravt funktionshindrad’ skapas i det gemensamma berättandet mellan deltagare och personal och att denna identitet verkar innebära att man är beroende av andra för att klara sitt vardagliga liv, åtminstone om man enbart lyssnar till talade berättelser. Likväl visar studien även att det kan råda delade meningar om vad denna identitet som ’gravt funktionshindrad’ kan innebära och att det bland deltagarna finns en strävan att kunna presentera en önskvärd identitet som ”normal” och att en sådan identitet innebär att vara oberoende och självbestämmande. Normalitet måste dock förstås i relation till omgivande samhälle (och de stora, kulturella berättelser som omger oss) och studien visar att normalitet i samband med grava funktionshinder är i det närmaste omöjligt att uppnå då normalitet i relation till sjukdom/kropp innefattar ett hopp om att bli frisk, eller åtminstone bättre. Deltagarna i denna studie har emellertid diagnostiserats som obotliga – det finns inget hopp om förbättring. Detta innebär inte desto mindre att deltagarna ändå försöker berätta sådana berättelser i strävan efter att uppnå en önskvärd identitet. Dock; för att höra denna berättelse krävs ett lyssnande på berättelser som vanligtvis förblir oberättade. En tydlig hierarki mellan olika former av språkanvändning identifieras, där det talade ordet och den talade berättelsen ses som överlägsen. Detta får till konsekvens att de funktionshindrade inte ses som kompetenta aktörer/kommunikatörer pga. av sina svårigheter att kommunicera verbalt och att deras sätt att skapa berättelser, genom förkroppsligande framställningar, inte erkänns som legitima sätt att berätta. Detta diskuteras både i relation till olika praktiska implikationer för vårdinstitutioner och för vidare narrativ forskning

Ethnoculturally-profiled care: Dementia caregiving targeted towards Middle Eastern immigrants living in Sweden.

This study was set out to explore the understanding of dementia as a culturally and socially shaped illness in order to illuminate such perceptions and experience in relation to ethnoculturally profiled dementia care in Sweden. The results indicate, contrary to many other studies (c.f. Conell et al 2009; Flaskerud 2009; Gray et al 2009; Hinton, Franz & Friend 2004) that the perception of dementia and the described meaning of the disease have little (or nothing) to do with decisions regarding formal care. However, cultural norms and traditions in relation to issues of filial piety seem to do. Thus, to understand how different ethnocultural groups might respond to dementia care within a migratory context, the current study illuminate the fact that it is crucial to realize that neither the individual person with dementia, nor larger ethnocultural groups can be placed within a vacuum that seemingly does not change or correlate with surrounding society

Communicative disability and stories : Towards an embodied conception of narratives

In this article we show that persons with communicative disabilities are often involved in storytelling that does not necessarily conform to the conventional expectations of what constitutes a narrative. By analyzing the relationship between story and storytelling event, and the relation between what could be called the primary storyteller and the vicarious storyteller, we show that storytellers with communicative disabilities are often quite inventive in finding ways of presenting themselves as competent storytellers even though they may have certain problems vocally animating a coherent, structured story. This lead us to conclude a necessary redefinition of what a narrative is – that it could be performed as well as it could be told – and that such a redefinition stresses methodological issues: in order to be able to study the life stories of people with communicative disabilities we need to use both narrative and ethnographic research methods

Development pressures for individual career of Latvian small and medium-sized business managers

In this article we show that persons with communicative disabilities are often involved in storytelling that does not necessarily conform to the conventional expectations of what constitutes a narrative. By analyzing the relationship between story and storytelling event, and the relation between what could be called the primary storyteller and the vicarious storyteller, we show that storytellers with communicative disabilities are often quite inventive in finding ways of presenting themselves as competent storytellers even though they may have certain problems vocally animating a coherent, structured story. This lead us to conclude a necessary redefinition of what a narrative is – that it could be performed as well as it could be told – and that such a redefinition stresses methodological issues: in order to be able to study the life stories of people with communicative disabilities we need to use both narrative and ethnographic research methods

Deciding upon Transition to Residential Care for Persons Living with Dementia : why Do Iranian Family Caregivers Living in Sweden Cease Caregiving at Home?

Previous research has shown how filial piety is strong among people of Iranian background and that traditional Iranian culture result in most families’ preferring to care for their elderly (and sick) family members at home. While acknowledging this, this article highlights what living in diaspora could mean in terms of cultural adaption and changing family values. By interviewing people with Iranian background living in Sweden (n = 20), whom all have been former primary caregivers to a relative living with dementia, we are able to show how the decision to cease caregiving at home is taken, and what underlying factors form the basis for such decision. Results indicate that although the existence of a Persian profiled dementia care facility is crucial in the making of the decision, it is the feeling of ‘sheer exhaustion’ that is the main factor for ceasing care at home. And, we argue, the ability to make such a decision based upon ‘being too tired’ must be understood in relation to transition processes and changes in lifestyle having an affect upon cultural values in relation to filial piety. Because, at the same time the changes on cultural values might not change accordingly among the elderly who are the ones moving into residential care, resulting in them quite often being left out of the actual decision