Re-engaging with places: Understanding bio-geo-graphical disruption and flow in adult brain injury survivors

Abstract

Acquired Brain Injury (ABI) is one of the most common causes of disability and death in adults worldwide. After a period of rehabilitation, many ABI survivors still face complex mind/body conditions when they try to take up their former life again. Besides lasting visible impairments such as weakness and loss of body balance, there are often less obvious disabilities such as extreme fatigue, hypersensitivity for stimuli, memory, concentration and attention problems or personality changes. The aim of this paper is to understand how ABI survivors and their significant others renegotiate their engagements with everyday places, using the concepts of bio-geo-graphical disruption and flow. We conducted in-depth interviews and did a place-mapping exercise with 18 adult ABI survivors and their significant others. The data were analysed according to the principles of thematic analysis, with use of Atlas.ti. In the struggles of ABI survivors' relations with place, our findings show diversity in personal experiences and strategies, as well as commonalities at a more general level. First, having access to meaningful places, old and new, and coming to terms with the fact that some places may not be accessible anymore, appeared to be vital in the participants' process of healing. Second, the interplay or, as we call it, reciprocity, between different places can contribute to wellbeing: for instance, the security and continuity found at home may enable ABI survivors to handle a trip to a crowded city centre. Thus, by framing mind/body problems of ABI survivors in terms of a network of meaningful places rather than as a body with lost functions, our study shows how the reciprocity between multiple places has a potentially positive effect on life post-ABI.

Patterns of participation: Facilitating and hindering aspects related to places for activities outside the home after stroke

“…We also cannot assume that there are certain places or activity domains that are attached to a certain combination of facilitating or hindering aspects, as all four domains were included in all the patterns of participation. Thus, in line with previous research [2,[24][25][26], to support people in their endeavour to maintain and recapture activities in places outside the home, it is important to understand that different aspects group together in different combinations to either facilitate or hinder participation.…”

“…This can in part be related to the participants talking about familiar places and that people mostly engage in activities that they perceive as being a reasonable distance from their home. The location of home, in relation to the possibility of accessing other outside places, has also been emphasized in previous research [2,24]. Cutchin [28] suggested that meaning is created through the connection of person and place that is always in progress, that is, meaning is negotiated through changes in the relationship between person and place.…”

“…Familiarity in relation to activities and places outside has been highlighted as an important aspect in regard to retained participation [24,26,27]. The public space where people with disabilities feel comfortable can become smaller, thereby reducing their possibilities for independent engagement outside the home [2,26]. Taken together, it seems important to maintain familiarity of places and the way to places to avoid changes in participation.…”

“…However, more research is needed to explore what drives people to go to different places e.g., what they do there and/or who they encounter, or other aspects. Taken together, future research needs to deepen the understanding of facilitating and hindering aspects and how people develop meaningful bonds with places for activities outside the home [2,24]. In relation to this, the physical environment, for example, stairs, slopes, gravel are of interest to explore further as well as other aspects of accessibility.…”

“…Participation commonly include engagement in activities in numerous places. After a stroke, it can be challenging to be engaged in activities in places outside the home [1][2][3][4]. Recent research has found that people with a severe or moderate disability after a stroke visit fewer places, compared to those with good recovery after stroke [5].…”