Role of Environmental Factors on Resuming Valued Activities Poststroke: A Systematic Review of Qualitative and Quantitative Findings

Accepted Manuscript The impact of environmental factors on resuming valued activities post-stroke: A systematic review of qualitative and quantitative findings Sandra Jellema, MSc, Rob van der Sande, PhD, Suzanne van Hees, MSc, Jana Zajec, BSc, Esther M.J. Steultjens, PhD, Maria W.G. Nijhuis-van der Sanden, PhD PII:

S0003-9993(16)00082-4

DOI:

10.1016/j.apmr.2016.01.015

Reference:

YAPMR 56437

To appear in:

ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION

Received Date: 13 October 2015 Revised Date:

7 January 2016

Accepted Date: 8 January 2016

Please cite this article as: Jellema S, van der Sande R, van Hees S, Zajec J, Steultjens EMJ, Nijhuisvan der Sanden MWG, The impact of environmental factors on resuming valued activities post-stroke: A systematic review of qualitative and quantitative findings, ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION (2016), doi: 10.1016/j.apmr.2016.01.015. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

ACCEPTED MANUSCRIPT TITLE PAGE

Running head:

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Impact of the environment post-stroke

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Title:

The impact of environmental factors on resuming valued activities post-stroke: A systematic review of

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qualitative and quantitative findings. (ARCHIVES-PMR-D-15-01320R1)

Authors;

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Sandra Jellema, MSc,a,b Rob van der Sande, PhD,b,c Suzanne van Hees, MSc,d Jana Zajec, BSc,d Esther M.J. Steultjens, PhD,b Maria W.G. Nijhuis- van der Sanden, PhD,a,b,d Radboud University Medical Center, Radboud Institute for Health Sciences, IQ Healthcare, Nijmegen, The

Netherlands;

HAN University of Applied Sciences, Faculty of Health and Social Studies, Institute of Health Studies,

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b

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a

Nijmegen, The Netherlands; c

Radboud University Medical Center, Radboud Institute for Health Sciences, Department of Primary and

Community Care, Nijmegen, The Netherlands; d

Radboud University Medical Center, Radboud Institute for Health Sciences, Department of Rehabilitation,

Nijmegen, The Netherlands

ACCEPTED MANUSCRIPT Acknowledgements; None

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Sources of funding; This research was funded by a HAN University of Applied Sciences PhD scholarship

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Conflicts of interest;

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No conflicts of interest to declare

Disclosures;

Corresponding author;

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None

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Sandra Jellema, HAN University of Applied Sciences, Institute of Health Studies, Kapittelweg 33, 6525 EN

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Nijmegen, The Netherlands. +31 243531286, [email protected]

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The impact of environmental factors on resuming valued activities post-stroke:

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A systematic review of qualitative and quantitative findings

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Abstract

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Objective: Investigate how reengagement in valued activities post-stroke is influenced by

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environmental factors.

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Data Sources: PubMed, CINAHL and PsycINFO were searched to June 2015 using multiple

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search terms for stroke, activities, disability and home and community environments, with

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the following constraints: English, Humans, Adults.

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Study Selection: Studies were included that contained data on how reengagement in valued

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activities of community-dwelling stroke-survivors, was influenced by the environment. Two

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reviewers independently selected the studies. The search yielded 3,726 records; 39 studies

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were eventually included.

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Data Extraction: Findings were extracted from qualitative, quantitative and mixed-design

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studies. Two reviewers independently assessed study quality using the Oxford Critical

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Appraisal Skills Programme lists and independently extracted results.

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Data Synthesis: Thematic analysis was conducted on qualitative data, revealing nine themes

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related to the iterative nature of the process of reengagement and the associated

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environmental factors. During the process of reengagement, environmental factors interact

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with personal and disease-related factors in a gradual process of shaping or abandoning

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valued activities. The sociocultural context in this case determines what activities are valued

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and can be resumed by stroke-survivors. Social support, activity opportunities and

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obligations; familiar and accessible environments; resources and reminders and a step-by-

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ACCEPTED MANUSCRIPT step return, facilitate stroke-survivors to explore, adapt, resume and maintain their

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activities. Social support is helpful at all stages of the process and particularly is important in

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case stroke-survivors are fearful to explore their activity possibilities. Quantitative data

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identified, largely endorsed above findings. No quantitative data were found in respect to

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the iterative nature of the process, familiar environments or accessibility.

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Conclusions: Reengagement in valued activities is a gradual process. In each stage of the

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process, several environmental factors play a role. During rehabilitation, professionals

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should pay attention to the role physical and social environmental factors have in

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reengagement post-stroke and find ways to optimize stroke-survivors’ environments.

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Key Words: stroke, systematic review, human activities, social participation, environment .

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Engagement in personally valued activities is a significant predictor of emotional well-being

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post-stroke.1 Self-perceived quality of life is associated with stroke-survivors’ opportunities

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to have control over their own lives, resume valued activities and have reciprocal

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relationships with family and friends.2 Stroke-survivors at least want to maintain those

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activities that are most important to their role, social position and identity.3, 4 A qualitative

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meta-study5 however showed that many stroke-survivors struggle with the loss of valued

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activities such as work and social activities. For some, the struggle of renegotiating valued

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activities persisted for many years after the onset of stroke.4

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ACCEPTED MANUSCRIPT Whether stroke-survivors manage to resume their valued activities not only depends on the

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nature and severity of their impairments, but also on features of their living environment.6-8

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Back in the 1960s, Lewin already stated that behaviour (B) is a function (f) of the person (P)

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and the person’s environment (E), which is expressed in what is known as Lewin’s equation:

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B = f (P,E).9 Early pioneers in rehabilitation research were familiar with person-environment

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theories such as Lewin’s.6 However, during the years to follow, disability research focused on

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the stroke-survivor’s impairments and ability to adjust, leaving the role of the environment

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unattended.6, 7 In current disability theories, the specific nature of environmental influences

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remains largely unexplained.6, 10, 11 Further theory development on this subject is warranted

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to predict rehabilitation outcomes, recognize stroke-survivors at risk and develop new ways

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to enhance reengagement in valued activities.6, 7, 11, 12 As the environment is very broad and

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it is undoable to map out all of its aspects, in order to construct an adequate general theory

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on environmental influences, identification of only those aspects that play a major role, is

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required.6

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To understand the impact of the environment on valued activities post-stroke more

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precisely, we conducted a systematic review of the relevant scientific literature. In the

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context of this review, valued activities were defined as activities that were voluntarily

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chosen, were common to stroke-survivors’ own living situations and were of specific value to

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them for reasons of role maintenance, social position or identity. In accordance with the

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widely used International Classification of Functioning, Disability and Health (ICF),

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environmental factors were defined as ‘those factors that make up the physical, social and

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attitudinal environment in which persons live and conduct their lives’. The ICF environmental

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factors are classified in five main chapters: products and technology; natural environment

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and human-made changes to environment; support and relationships; attitudes; and

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services, systems and policies.13

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Environmental factors can impact on valued activities in various ways. They can work as a

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facilitator or a barrier to activity performance. One particular environmental factor (e.g. a

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ramp) can be a facilitator in one and a barrier in another situation (e.g. a wheelchair user

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versus someone with poor walking balance entering a house). Barriers and facilitators

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applying equally to everyone within certain circumstances (e.g. cultural or climatic) can be

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referred to as scene setters.14 Environmental factors can be classified as independent,

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mediating or moderating. Independent factors affect reengagement in valued activities

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regardless of their association to other factors. Mediating factors are part of a causal chain

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of factors ultimately shaping reengagement, and moderating factors modify the causal effect

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between one or more factors and reengagement.10 Environmental factors can play a role in

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various direct and indirect ways: lack of money can be a direct barrier to travelling, while

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discouragement from others can indirectly hinder this activity because of its demoralizing

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effect. Reverse or reciprocal effects are also possible: colleagues’ positive attitudes can

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encourage stroke-survivors to return to work, while stroke-survivors’ successful

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reengagement efforts in turn can lead to colleagues having more positive attitudes. Not all

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environmental factors have an equivalent impact: it is not clear whether environmental

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barriers are summative or whether one barrier creates a ‘deal breaker’ exclusively disrupting

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reengagement in valued activities regardless of all other factors present.12 Neither is it clear

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whether some specific factors can surmount the negative impact of several others.12

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ACCEPTED MANUSCRIPT It is largely unknown what specific role environmental factors play in the process of

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reengagement in valued activities post-stroke. Nor is it clear what can be done to optimize

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stroke-survivors’ environments. By conducting meta-synthesis on the available qualitative

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and quantitative data on this topic, we believed it would be possible to further clarify the

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role of the environment. The following research question was formulated: In what way,

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according to the scientific knowledge available, do environmental features influence

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reengagement in valued activities post-stroke and what are the implications of these findings on rehabilitation practices and future research?

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Methods

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Procedure

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In this study the ICF was used as a starting point to identify literature about valued activities

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post-stroke. The ICF Activity and Participation section describes all human activities. It

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consists of nine chapters (chapter d1 to d9). Lower ICF-d categories generally relate to ‘basic

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tasks and actions’ and higher categories to 'engagement in (complex) life situations’.6

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Although, in fact, there is no clear subdivision, several authors6, 14 make a distinction

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between activities that can be performed at an individual level (‘activities’) and activities

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that are performed with others (‘participation’). In this study it however was argued that,

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from the perspective of stroke-survivors resuming their valued activities, only activities that

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were potentially important to the stroke-survivor’s role, social position or identity (such as

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ACCEPTED MANUSCRIPT ‘conversing with friends’ or ‘work’), were useful to include into the review study. Activities

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that were more instrumental to this (such as ‘thinking’ or ‘solving problems’), were not

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included. Therefore, all studies describing activities that could be classified with ICF code d-

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3.500 (‘starting a conversation’) and up were included for further analysis. An exception to

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this were some mobility activities that, although more instrumental by nature, had higher

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ICF-d codes (such as ‘climbing’ or ‘crawling’ d-4.55)

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Literature was identified from a variety of disciplines in PubMed, CINAHL and PsycINFO for

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the period June 1983-June 2015 (initial search to June 2013, additional search to June 2015).

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Since only a few suitable MeSH headings exist on environmental factors, and relevant

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keywords vary widely, a search strategy consisting of two steps was used: first, all studies on

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stroke and valued activities were identified and, second, of these, all articles containing an

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author’s description of how environmental factors influence stroke-survivors’ valued

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activities were extracted. The following search strings were combined (PubMed):

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stroke (MeSH Terms: relevant sub-headings)

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(human activities[Mesh] OR education[Mesh] OR transportation[Mesh] OR mobility

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OR work OR employment OR volunteer OR activities of daily living OR self care OR

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family functioning OR family life OR relationship* OR domestic life OR civic life OR

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social functioning OR communication)

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(disabilit* OR disabl* OR participat* OR reintegrat* OR handicap* OR perform* OR

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functioning OR incapable OR capable OR abilities OR ability OR engage*)

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(home OR community OR school OR work OR outdoor* OR out of doors OR traffic OR

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transport OR public OR social OR context* OR environment* OR social 6

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environment[Mesh] OR environment[Mesh] OR service OR geograph* OR ecolog*

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OR cultur*)

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[restrictions: English language, Humans, Adults ]

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Please see the supplementary file for a complete description of the search string.

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Inclusion of studies

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Two stroke rehabilitation experts/ researchers (JZ and SJ) independently identified studies

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that met the inclusion criteria by title and by abstract. Prior to each inclusion step, a sample

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of 10 reports was used to verify agreement in applying the inclusion criteria. The criteria

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were as follows: non-biomedical studies on community-dwelling adult stroke-survivors,

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containing authors’ findings on how environmental factors influenced valued activities post-

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stroke. The aim was to identify environmental factors that in general play a role in

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reengagement post-stroke. Because single case studies were expected to also describe

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factors that in individual cases played a role, these studies were excluded. Studies about

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professional health-services (ICF code: e580) were excluded because the aim was to provide

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knowledge on environmental influences rather than to present evidence on professional

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interventions.

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ACCEPTED MANUSCRIPT Two stroke rehabilitation experts/ researchers (SH/JZ and SJ) independently read the full

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texts and decided which studies to include. Any disagreement was resolved by discussion. If

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necessary, a third subject matter expert/ researcher (ES) was consulted, whose decision was

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final.

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Assessing methodological quality

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The methodological quality of the studies was assessed using the Critical Appraisal Skills

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Programme (CASP)15 lists. This is a coherent set of checklists suitable to examine

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methodological quality of studies with various design. Each original study was assessed by

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SH and SJ independently, using the specific list per design (qualitative or cohort). Any

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disagreement was resolved by discussion. Percentage scores were calculated based on

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fulfilled items divided by the total number of relevant items. Studies with CASP scores higher

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than 65% were included for further analysis.

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Data extraction

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SH and SJ extracted major findings from all studies independently. In qualitative studies, this

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was done by extracting all parts of the text in which the specific role of the environment in

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valued activities was explained by the author. For example, the finding that caregivers

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facilitated stroke-survivors’ reengagement in friendships because caregivers encouraged 8

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stroke-survivors to maintain their friendships and organized meetings for them, was

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extracted. The simple notion that caregivers facilitated reengagement in friendships

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(without explaining why), was not extracted.

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In quantitative studies, data from any multivariate analysis investigating some kind of

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relationship between one or more environmental factors and valued activities were

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extracted.

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The qualitative and quantitative data that could be identified within the mixed-design

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studies were extracted similar to the above mentioned qualitative respectively quantitative

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data-extraction procedures.

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Analysis

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Because limited quantitative evidence was expected to be found in the literature, data from

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qualitative meta-synthesis were taken as a starting point for overall data synthesis. Analysis

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from all qualitative data (from qualitative and mixed-design studies) was conducted by two

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researchers (SH/ SJ) independently. First, as the aim was to describe the commonalities and

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main principles of environmental influences, thematic analysis was conducted on qualitative

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data. This type of analysis is used to identify patterns across data that are important to the

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description of a certain phenomenon.16 For the purpose of this thematic analysis, all findings

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identified within qualitative studies were organized into ‘meaning units’. A meaning unit is a

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meaning of the reported finding.17 The units found were analysed following the guidelines

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for the constant comparative method.18 Each unit was constantly compared with the other

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units to identify similarities and differences, and with the initial study findings to ensure the

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researchers stayed close to the original data. Units that seemed to belong together were

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grouped. Through extracting the essence out of similar meaning units, themes emerged.

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At the end, the credibility of the themes was verified by re-reading all included studies while

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checking whether stroke-survivors’ experiences were indeed reflected by these themes. This

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resulted in a final refinement. Meaning units and themes were discussed continuously

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between the researchers until a consensus was reached.

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Second, quantitative findings were linked to the themes found and consistencies and

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inconsistencies between qualitative and quantitative findings were studied. This led to

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conclusions on how environmental factors add to reengagement in valued activities post-

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stroke.

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Results

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As shown in Figure 1, 3,726 studies (initial + additional search; 2,974 + 752) were identified,

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resulting in 39 studies that fulfilled the inclusion criteria and had CASP scores higher than

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65%. Of these, 29 reported qualitative data, seven reported quantitative data and three had

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a mixed design. Studies mainly came from Western countries such as Sweden, Canada and

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Australia. One study was from Malawi, one from Taiwan. Table 1 shows all identified studies,

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their characteristics and methodological quality.

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Qualitative studies: Six studies focused on community reengagement, three on social

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activities (both activity domains are classified within ICF chapter d-9); four on return to work

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(ICF d-8); three on driving or traveling (ICF d-4); two on sports or leisure (ICF d-9) and one on

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eating (ICF d-5). The remaining focused on valued activities in general (ICF d3-9). In total, the

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qualitative studies included 393 stroke-survivors. Participants’ characteristics varied widely

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for functional limitations, age and time post-stroke. Nine studies focused on stroke-survivors

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younger than 66 years old, five on older stroke-survivors and thirteen on both. In two

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studies, the ages were not reported. Overall, the reported ages ranged from 18 to 94 years

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and measurement time-points ranged from a number of weeks to 32 years post-stroke.

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Twenty-three studies used semi-structured interviews, three used focus groups and one

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used both. One study used observations and another used a blog.

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Quantitative studies: Two studies focused on community reengagement (ICF d-9) and five on

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valued activities in general (ICF d3-9). The studies included a total of 865 stroke-survivors.

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One study included aphasic stroke-survivors and one only male stroke-survivors. The 11

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remaining included stroke-survivors ‘in general’. Six studies included younger and older

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participants. In one study, the age was not reported. Overall, the reported ages ranged from

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35 to 97 years. All studies were cross-sectional. The measurement time-points ranged from

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three months to 27 years post-stroke.

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Mixed studies: All three mixed-design studies focused on valued activities in general (ICF d3-

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9). The studies combined activity measures with open-ended questions. One was a cohort

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study; two were cross-sectional. The studies included a total of 122 stroke-survivors. All

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included younger as well as older stroke-survivors. One study examined stroke-survivors

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with aphasia; two examined stroke-survivors ‘in general’. Reported ages ranged from 47 to

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81 years; measurement time-points ranged from one month to one year post-stroke.

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Qualitative findings

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Analysis of all qualitative findings (from qualitative and mixed-design studies), revealed nine

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themes with respect to the impact of the environment in valued activities post-stroke. The

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themes related to the nature and content of the process of reengagement (theme 1 and 2),

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to the environmental factors that independently initiated this process (theme 3), mediated

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this process (theme 5) or moderated it (theme 4, 6, 7, 8 and 9). 12

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Theme 1. The person and the environment together shape reengagement. Personal,

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physical and social factors together determined whether valued activities were resumed or

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abandoned by stroke-survivors.19-23 Barnsley (2012), for example, found that the stroke-

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survivors’ emotional disposition and expectations of recovery, the availability of meaningful

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travelling destinations and other peoples’ attitudes and behaviour, determined whether the

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stroke-survivors were hesitant or confident in exploring traveling opportunities.23 In most

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studies, it was not made clear which factors precisely influenced one another. One study24

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concluded that environmental factors mobilized personal factors while another study25

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concluded the opposite.

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Theme 2. Reengagement, an iterative process. The process through which stroke-

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survivors ultimately regained their valued activities, was iterative by nature. For stroke-

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survivors, reengagement in valued activities was a stepwise process of scaffolding small

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tasks into activities.26, 27 It could be described as ‘work in progress’ in which there was an

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ongoing interaction between the stroke-survivor and the physical and social environment.19-

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While trying to perform their activities, challenging community contexts forced stroke-

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survivors to constantly strategize about activity solutions.28 They had to negotiate about

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whether they were capable of performing certain activities and had to bargain for access to

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resources and practical support.28 In case stroke-survivors recovered relatively well from

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stroke, environmental barriers could be overcome with help of others and, gradually, stroke-

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survivors could resume their valued activities.26 At times, however, even the most able 13

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their valued activities. They hesitated to explore their possibilities. Stroke-survivors

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especially feared leaving the relative safe atmosphere of their homes.26, 29 Activities were

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abandoned or became more passive, sedentary, solitary and mainly occurred at home.28, 30,

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Theme 3. The impact of the sociocultural context. Sociocultural values, habits and

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beliefs determined which activity goals were valued by stroke-survivors. For example, in

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formerly communist Latvia, stroke-survivors had activity goals that were closely related to

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societal productivity.32 Also, in a western society such as Norway, activity goals were related

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to being active and productive.33 Stroke-survivors often valued activities that were common

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to the region they lived in33, 34 such as hiking in Norway. As a result of the public belief that

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ageing comes with activity abandonment, older stroke-survivors more easily refrained from

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their valued activities.27, 28 The public belief that stroke-survivors are incapable of anything

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and have nothing to give, resulted in stroke-survivors being ignored and socially excluded.26,

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28, 35-37

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public, it was difficult to ask for help.38

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This was a significant barrier to valued activities: when interfacing with the general

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Theme 4. The value of familiar environments. Familiar environments (such as the

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home or workplace) made stroke-survivors aware of their rehabilitation needs. In this

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situation stroke-survivors were confronted with their limitations, which made them reflect

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and ultimately led to an adjustment of current activity expectations and personal

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rehabilitation goals.27, 39 Confrontation with familiar environments also helped stroke-

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survivors to identify environmental barriers and possible adjustments, which ultimately

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made it easier for them to resume their valued activities.38

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Theme 5. Social support and reciprocity as mediators. Social support was crucial: it

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was difficult for stroke-survivors to overcome barriers to valued activities on their own.30, 36,

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stroke-survivors were often fearful and their impairments made them vulnerable to others’

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rejection of their activity goals. They needed people to advocate for them and to create

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activity opportunities for them.19, 26, 28 Stroke-survivors who were encouraged to pursue

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their activity goals and were assured that their reengagement was valued, were more

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successful at resuming their valued activities.26 However, if others were not supportive,

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unnecessarily took over activities and did not allow for some autonomy on the part of the

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stroke-survivor, they blocked reengagement in valued activities completely.23, 26-28, 33, 37, 38 In

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social relationships, reciprocity was important: stroke-survivors wanted to contribute to

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others and feared being a burden to them.27, 35 They often refrained from activities that

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required help from already heavily occupied caregivers.27, 40

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Adequate support was especially important when the stroke-survivor first came home:

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Theme 6. Environmental obligations and opportunities. Family obligations

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encouraged stroke-survivors to resume activities such as household chores or childcare.27, 41

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At work, some, but not too much, demands were helpful to become reengaged.42 The

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presence of personally meaningful travelling destinations and social opportunities outside

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the house, facilitated stroke-survivors to go on outings.23, 43

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Theme 7. The social context as a moderator to reengagement. Familiar people enhanced reengagement; when in their company, stroke-survivors felt more secure and less

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afraid to make mistakes.29, 36, 44 Familiar people especially made the stroke-survivor’s return

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to valued activities easier if they were respectful, patient, willing to accommodate to the

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stroke-survivor, positioned the stroke-survivor as potentially ‘able’ and validated the stroke-

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survivor’s progress. 26, 29, 37, 45 Encouragement, help with making plans, accompanying stroke-

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survivors in their reengagement efforts and assisting them in finding solutions was also

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helpful.26, 27, 36, 38, 46

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Theme 8. The physical environment and accessibility. Stroke-survivors found it easier

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to access rural areas than urban areas because of better social interaction opportunities.19, 43

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Quiet places were particularly helpful for aphasic stroke-survivors: noise made it difficult for

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them to follow conversations, which resulted in fewer social interaction opportunities.36

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Familiar environments enhanced reengagement by making stroke-survivors feel more able

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and secure.19, 22, 29, 39 Stroke-survivors with eating problems experienced the home

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environment to be helpful. They preferred to eat at home because they often felt humiliated

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when they were not able to eat in a socially acceptable way. At home, they felt free to adapt

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their eating habits and accept help if necessary.29 Although the home environment was

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often the most accessible, stroke-survivors found the community an important area to

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recapture: being able to leave the house literally made participants feel they were part of

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the world.30, 38 However, in the often unsupportive world outside, stroke-survivors had to

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struggle to adapt.38, 47 They described a lack of environmental adaptations in the community

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to help them perform their activities and feel part of community.35, 38, 47

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ACCEPTED MANUSCRIPT Theme 9. Physical resources. Because stroke-survivors often had mobility

375

restrictions, both mobility devices and public transportation were federally described as

376

facilitators to valued activities.37, 41, 47, 48 Reminders such as alarm-clocks, checklists or

377

memory notes and regular, pre-scheduled activities helped stroke-survivors to remember to

378

perform activities and develop a daily routine.41, 42, 44, 49

379

381

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380

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Quantitative findings

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382

Findings from multivariate analyses (from quantitative and mixed-design studies) were all

384

related to the qualitative themes found. See Table 2 for corresponding quantitative and

385

qualitative evidence. The quantitative data confirmed the finding that the environment and

386

the person together determine activity reengagement (theme 1),50-52 that the sociocultural

387

context determines stroke-survivors’ choices and possibilities to resume their activities

388

(theme 3),34 and that reciprocal mediating effects between stroke-survivors and significant

389

others can have an increased effect on activity reengagement or disengagement (theme

390

5).53, 54 The quantitative evidence on social support (theme 5 and 7) was contradictory:

391

Griffen et al51 found social support to be a small moderator to reengagement, whereas

392

Beckley et al55 and Gottlieb et al56 did not. In the last study, it was assumed that the

393

potentially beneficial effect of social support might have been masked by the effect of

394

overprotective care that was delivered by some of the caregivers that participated in the

395

study.56 The one, dated study on overprotection (Atler et al)57 however, was not able to

396

identify a negative effect of overprotection on stroke-survivors’ valued activities. In respect

397

to the other themes (2,4,6,8,9) no quantitative evidence was found.

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400

Insert Table 2 about here (2 columns)

401

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402 403

As quantitative data on the impact of the environment were scarce, theory on

405

environmental influences largely has to build on qualitative findings. Based on the themes

406

found, a conceptual model of the process of reengagement post-stroke and the associated

407

environmental factors was constructed. Although quantitative evidence on social support

408

was contradictory, stroke-survivors unanimously acknowledged its value. Therefore, until

409

more consistent quantitative evidence on social support will be available, for now, we chose

410

to incorporate it into the conceptual model.

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411

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404

Figure 2 presents the main environmental influences for each stage of reengagement. It

413

shows stroke-survivors’ beliefs, priorities and activity options to be influenced by the ‘scene

414

setting’ sociocultural and physical features of their environment. From stroke-survivors’

415

perspectives, sociocultural factors work as independent factors influencing their choices and

416

possibilities for activity reengagement. Accessible environments are a positive moderator, as

417

are other people that provide adequate support. In cases where stroke-survivors are too

418

anxious to explore their activity opportunities, supportive others serve as mediators to

419

reengagement. Meaningful traveling destinations and activity opportunities, family and work

420

obligations, familiar environments, a step-by-step return, resources such as a wheelchair,

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412

18

ACCEPTED MANUSCRIPT 421

and pre-scheduled activities and reminders also served as moderators facilitating activity

422

reengagement and maintenance. Reciprocity was a mediator to activity maintenance.

423

-----------------------------------------------------------------------------------------------------

425

Insert Figure 2 about here (2 columns)

426

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427 428

Discussion

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429 430

In this review, nine themes were found describing the process of reengagement post-stroke

432

and its associated environmental factors. Some of the identified factors independently

433

influenced reengagement in valued activities, while others moderated or mediated

434

reengagement. Quantitative data on the impact of the environment was scarce and

435

therefore evidence on environmental influences post-stroke is limited. A comparable mixed-

436

method review58 in intellectually disabled people also found few quantitative data.

437

Facilitators mentioned in this review, were: opportunities for autonomy, stimulation of the

438

environment, positive staff attitudes, social support, assistive technology and transport.

439

Although not entirely the same, factors identified had much in common with the findings of

440

our review. Heinemann et al59 conducted an extensive literature review and used item

441

classification, item selection, and cognitive testing to develop an item set of environmental

442

factors relevant in stroke, traumatic brain injury, and spinal cord injury. They found following

443

categories of factors: assistive technology; built and natural environment; social

444

environment; services, systems, and policies; access to information and technology; and

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431

19

ACCEPTED MANUSCRIPT economic quality of life. These categories match largely with the environmental factors that

446

can be found in the original studies of our review. However, as not for all the environmental

447

factors present in those original studies, authors explained the specific role these factors had

448

in regard to reengagement in valued activities, these factors were not all represented in the

449

definitive findings of our systematic review.

450

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445

In this review, a conceptual model on the role of the environment in reengagement post-

452

stroke was constructed. An important finding based on the qualitative data was that,

453

although physical accessibility was important, throughout the whole reengagement process

454

social support particularly was of value. For stroke-survivors exploring new activity

455

possibilities, social support even seemed to be crucial. The anxiety commonly felt by stroke-

456

survivors when exploring new activity possibilities, was earlier described by other authors.60,

457

61

458

challenging situations and activities in order to protect a positive self-concept and avoid

459

anxiety posed by the threat.60, 61 If, in this case, activity opportunities and demands are too

460

low and support is lacking, stroke-survivors may not even seek out or know about their

461

reengagement opportunities and easily abandon their valued activities.12 Others’

462

overprotective behaviour, in this case, might serve as a crucial negative mediator or ‘deal

463

breaker’ completely hindering stroke-survivors from resuming their activities.

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It was referred to as ‘threat appraisal’; stroke-survivors tend to restrict engagement in

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464

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451

465

Wang et al10, exploring the role of environmental factors, suggested that the physical

466

environment, physical resources and social support are likely to act as moderators to

467

reengagement whereas attitude may be a mediating factor. Although, in this review,

20

ACCEPTED MANUSCRIPT 468

attitude was not identified as a separate factor, the results of this review largely were in

469

accordance with Wang’s assumptions.

470

In the present review, few data were found relating to the ICF categories ‘natural

472

environments and human-made changes’ (ICF e2) and ‘services, systems and policies’ (ICF e-

473

5). Stroke-survivors, when asked to discuss environmental facilitators and barriers, probably

474

mainly mention factors which are present in their immediate living environments. Hammel

475

et al8 showed such ‘individual level’ factors to be influenced by ‘higher order’ community

476

level factors (such as natural environment management), which in turn are influenced by

477

societal level factors (such as politics). In the future, the conceptual model presented in this

478

review should be improved by taking the community level and societal level into account.

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471

479

481 482

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480

Implications for rehabilitation

In accordance with Lewin’s theory, this review confirmed behaviour to be a function of the

484

person and the person’s environment. Incorporating environmental influences into stroke

485

disability models can help rehabilitation professionals to better understand what helps or

486

hinders stroke-survivors to resume their activities. By carefully considering a stroke-

487

survivor’s physical and social environment, professionals can better understand the

488

challenges a stroke-survivor faces when resuming his or her valued activities. By advising

489

stroke-survivors about home, work and community adaptations and resources available, and

490

by ensuring stroke-survivors have maximum opportunity to explore their activity possibilities

491

in familiar environments, professionals can enhance rehabilitation outcomes.

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483

21

ACCEPTED MANUSCRIPT 492

During the rehabilitation phase, professionals should work with stroke-survivors’ family

494

members, friends and acquaintances. They should invite them to take an active part in the

495

rehabilitation process and equip them with knowledge and skills to adequately support and

496

encourage the stroke-survivor in his or her reengagement efforts. Especially if stroke-

497

survivors are not able to advocate for themselves, educating others about the importance of

498

resuming valued activities and taking part in society post-stroke is crucial. By teaching them

499

to allow stroke-survivors some autonomy and help them to strategize with stroke-survivors

500

about activity solutions, possibly overprotection can be avoided and reengagement can be

501

enhanced. Professionals could show significant others how to create activity opportunities

502

(for example by taking the stroke-survivor on an outing or inviting friends over). They could

503

also find ways for the stroke-survivor to contribute and add to family life so that reciprocity

504

in relationships can be improved and (mutual) activity patterns can be maintained. Future

505

research should reveal which interventions and techniques can be effective in working with

506

stroke-survivors’ social networks.

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SC

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493

509 510

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508

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507

Study limitations

511

This review helped to better understand the role the environmental plays in valued activities

512

post-stroke. It provided renewed insight in what can be done to enhance rehabilitation

513

outcomes. However, it is not yet complete. As only authors’ explanations about

514

environmental influences were extracted, consequently environmental influences that were

515

self-evident and therefore were not explained by authors, were not taken into account (e.g. 22

ACCEPTED MANUSCRIPT the role of money in travelling ). Nor did this study systematically review personal factors

517

important to reengagement, such as determination. In this respect, a qualitative review

518

(Walsh et al) found perseverance, adaptability and the ability to overcome emotional

519

challenges to be crucial to community reengagement.62 Further exploration of the

520

relationship between personal and environmental factors and their mutual role in

521

reengagement is needed to learn more about how reengagement is shaped.

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516

522

The terminology and designs used in the included studies were variable, and quantitative

524

evidence was scarce. Also, not on all relevant ICF d-chapters (such as ‘domestic life’ (ICF d-6)

525

or ‘interpersonal relationships’ (ICF d-7)), studies were available and there also was lack of

526

studies from non-Western countries. The conclusions drawn in this review might therefore

527

be preliminary and probably cannot be generalised to all valued activities and countries.

528

However, as to our knowledge, this is the first systematic review on how the environment

529

affects reengagement in valued activities post-stroke. It can therefore be of value to stroke-

530

rehabilitation trajectories as well as provide an important starting point for further research.

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SC

523

533 534

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532

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531

Future research

535

It is essential to further study the impact of the environment on valued activities post-stroke.

536

Especially the role of social support should be studied more in depth. Adequate tools should

537

be developed that are capable of mapping out environmental facilitators and barriers that

538

play a role in each specific case of stroke-survivors trying to resume their valued activities.

539

Ways in which professionals can work together with stroke-survivors and their significant 23

ACCEPTED MANUSCRIPT 540

others to enhance stroke-survivors’ reengagement in activities, should also be developed

541

and investigated for effectivity .

542

544

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543

Conclusion

545

Reengagement in valued activities post-stroke is a gradual process. In each stage of this

547

process, different environmental factors play a role. Although not entirely confirmed by the

548

scarce quantitative data of this review, according to stroke-survivors, adequate support was

549

important at all stages of the reengagement process. In this review some renewed insights

550

were provided on options to enhance reengagement in valued activities post-stroke.

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TE D

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546

24

ACCEPTED MANUSCRIPT

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Figure legends

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Fig 1 Inclusion of studies

Fig 2 Process of reengagement in valued activities and associated environmental factors

stage of reengagement

mediator

moderator

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personal factor

31

ACCEPTED MANUSCRIPT Table 1 Qualitative, quantitative and mixed design studies

ref

study quality

Stroke participants, measurement time points,

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Study, year

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QUALITATIVE STUDIES

(%)

Subject of stroke study

Kubina 2013 27

100%

Process of engagement in

first ever stroke, 6 (T1), 9 (T2), 12 (T3), 18 (T4),

personal valued projects.

24 (T5) months post-stroke, n=6, age 58 (40-68)

Facilitators and barriers of

living in urban area, 1 to 6 years post-stroke (T1),

everyday activities.

n=9, age 58.2 (53-64)

si, Canada

Anderson 2011 26

100%

100%

si, obs,

19

100%

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Dalemans 2010

Netherlands

Erikson 2010 si, Sweden

39

Loss of contact with friends,

diverse group, 8-15 months post-stroke (T1), n=29,

possible protective factors.

age 68 (18-90)

EP

si, U.K.

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si, Canada

Northcott 2011 44

100%

number of participants, mean age (range or SD)

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method, location

Perceived social participa-

aphasia, ≥ 6 months post-stroke (T1), n=13, age

tion of people with aphasia

57,4 (45 -71) and their caregiver.

and perceived influencing factors.

Meaning of actions in

first ever stroke, limitations in ADL, 3 (T1), 6 (T2)

different places during

and 12 (T3) months post-stroke, n=7, age 52,6 (42-

the first year.

61)

1

ACCEPTED MANUSCRIPT si, Ireland

Liddle 2009

48

100%

si, Australia

Casey 2008

47

100%

si, Ireland

Experiences of older adults

inpatient rehabilitation min. of 2 weeks, MMSE 24-

return to leisure activities

30, no severe speech impairments, ≤ 1 year post-

following rehabilitation.

stroke (T1), n=5, age 74 (68-84)

Needs and experiences of

some time after stroke when loss of driving was

those who cease driving.

apparent (T1), n=24, age 67 (50-83)

Older patients perception of

3 months to 9 years after discharge (T1), n=20,

their independence and per-

age 77,8 (65-88)

ceived facilitators/ barriers.

41

100%

Barriers and facilitators of

fi, U.S.A.

exercise.

Barker 2006

40

100%

si, Canada

≤ one year post-stroke (T1), n=13, age 59

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Damush 2007

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100%

SC

O'Sullivan 2010 30

(SD 12.3)

Perceptions regarding

wheelchair users, 2 years to 16 years post-stroke

wheelchair use and

(T1), n=10, age 75.5 (70-80)

Anderson 2013

28

89%

si, Canada

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community participation.

Ways in which family, so-

some years after stroke (T1), n=9, age 58 (53-64)

cial and community re-

EP

sources enhance participa-

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tion in meaningful activities.

Vestling 2013

42

89%

si, Sweden

Barnsley 2012 si, Australia

23

89%

Experiences and thoughts

first ever stroke, 1 to 18 months post-stroke (T1),

about return to work.

n=12, age 52.5 (43-61)

Experiences and attitudes

having had outdoor journey therapy sessions, medi-

to traveling outdoors.

an time after discharge 21 days (T1) and 3 months later (T2), n=19, age 68.6 (SD 11.7)

2

ACCEPTED MANUSCRIPT Corrigan 2012

43

89%

si, Australia

Perceptions about facilitators

physiotherapists from 4 regional rehabilitation

and barriers to community

centers, n=11

ambulation.

89%

si, Sweden

Influence of computer based

difficulties in ADL related to cognition, ≥1 year

assistive technology for

post-stroke (T1), n=4, age 77,5 (69 - 87) + 4 care-

cognitive support in every-

givers.

day life.

89%

Egbert 2006

25

3 (T1), 6 (T2), 9 (T3) and 12 months (T4) post-

post-stroke.

stroke, n=22, age 71 (50-94)

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si, Australia

Impact of driving issues

SC

24

White 2012

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Lindqvist 2012 49

89%

si, U.S.A.

Communicative processes

right-hemisphere stroke, ≥6 months after discharge

by which social support can

(T1) , n=12, age 60.7 (SD 10.1) + their family

assist in the process of

caregivers.

Hammel 2006

38

89%

si, U.K.

Reid 2004 si, Canada

21

no depression or Alzheimer, some time after dis-

goals, experienced barriers

charge (T1), n=19, age 55.5 (36-79) + their 'im-

and supports.

portant others'/ access specialists.

89%

Facilitating and hindering

6 weeks to 32 years post-stroke (T1), n=37, age x

AC C

Lock 2005

Community participation

EP

si, fi, U.S.A.

TE D

community integration.

factors to paid or voluntary

(20-65) + their supporters.

31

89%

work. Interactions among the home

normal range MMSE, mean time after stroke 6.9

environment and

years (T1), n= 19, age 67 (50-88)

disability.

3

ACCEPTED MANUSCRIPT 33

Lund 2015

78%

fi, Norway

Older patients experience

21< MMSE ≤30, 14 ≤ BI ≤ 20, at least 3 months

of changes in everyday

post-stroke (T1), n=8, age 78 (69-88)

occupations. 29

78%

si, Iceland

Robison 2009

22

78%

patients with eating problems, between 7 months

eating related difficulties in

and eight years post stroke (T1), n=7, age 34-64

stroke.

(mean 53)

Facilitating and hindering

one year after stroke (T1), n=19, age 70,5 (53-85)

factors in resumption of valued activities 12 months

Medin 2006

46

78%

si, Sweden

Corr 2003

45

78%

Chimatiro 2014

35

67%

si, Malawi

Experience of return to

first ever stroke, 3 years after stroke (T1), n=6, age

work.

x (30-65)

Support received in return to

10-132 months since stroke (T1), n=6, age 52 (38-

work.

62)

TE D

si, U.K.

M AN U

post-stroke.

SC

si, U.K.

The experience of eating and

RI PT

Klinke 2014

Perceived barriers to reinte-

≥ one year after discharge (T1), n=8, age 54 (SD

gration into community after

5.2)

36

Impact of stroke and aphasia

blog-users, some time after stroke (T1), n=10

blog analysis,

on a person’s relationships

(age x)

U.K.

with family, friends and the

Le Dorze 2014 fi, Canada

67%

AC C

Fotiadou 2014

EP

discharge.

37

67%

wider network.

Factors that facilitate or

2 to 18 years post-stroke (T1), n=17, age 65.7 (51-

hinder participation in apha-

84)

sia.

4

ACCEPTED MANUSCRIPT Koch 2005

20

67%

right hemisphere stroke, ≥6 months after discharge

back into the community

(T1), n=12, age 61 (range: x), and their primary

(regarding employment).

caregivers.

RI PT

si, U.S.A.

Experience of integration

ref

study quality

Stroke participants, measurement time points,

M AN U

Study, year

SC

QUANTITATIVE STUDIES

(%)

Subject of stroke study

number of participants, mean age (range or SD)

Rochette 2001 50

100%

Relationship between

6 months after discharge (T1), n=51, age 71.3 (40-

cross-sectional,

several environmental

97)

Canada

factors and handicap.

Perrin 2008

54

83%

Links between caregiver

≥6 months post-stroke (T1), n=135, age 62.5 (SD

psychosocial variables and

14.4)

EP

cross-sectional,

TE D

design, location

care recipient functioning.

AC C

U.S.A.

Atler 1989

57

83%

Relationship between a)

male, living with spouse, self care dependent, 3

cross-sectional,

spouses attitudes/ family

months to 8 years post-stroke (T1), n=30, age 68.4

U.S.A.

cohesion & adaptability/

(54-85)

spouses' social network AND b) post-stroke activity levels.

5

ACCEPTED MANUSCRIPT Chang 2014

52

67%

Disability of patients with

cross sectional,

different ages in response

Taiwan

to a lack of aids for mobility

some time after stroke (T1), n=364, (age x)

and transport.

67%

cross-sectional,

Effects of driving cessation

no psychiatric diagnosis, 3-330 months post-stroke

on community integration.

(T1), n=90, age 57.1 (SD 11.5) and their 'infor-

U.S.A.

mant'.

55

67%

cross-sectional,

Impact of social support on

no aphasia, 3 to 6 months after discharge (T1),

community participation.

n=95, age 68.46 (SD 12.16)

Gottlieb 2001 56

67%

M AN U

U.S.A.

SC

Beckley 2006

RI PT

51

Griffen 2009

Influence of social support

ADL independent before stroke, some time after

cross sectional,

and economic condition on

stroke (T1, mean 15 months), n=100, age 73 (SD 8)

Israel

the components of the WHO

AC C

EP

MIXED DESIGN STUDIES

TE D

model.

Study, year

ref

method/design

study quality

location

(%)

Subject of Stroke Study

number of participants, mean age (range or SD)

100%

Sexual changes after stroke.

first ever stroke, no severe aphasia, 1 month (T1)

Giaquinto 2003 53

Stroke participants, measurement time points,

cohort, survey,

and 1 year post-stroke (T2), n=62, age 64.0 (SD

Italy

9.2)

6

ACCEPTED MANUSCRIPT Wallace 2010

34

89%

Life participation in aphasia.

si, cross-sectional,

single ischemic stroke with chronic aphasia, ≥ 9 months post-stroke (T1), n=40, age 61.3 (SD 14.4)

U.S.A.

89%

Impact of stroke one year

si, cross-sectional,

after.

one year post-stroke (T1), n=20, age 65 (47 - 81)

RI PT

Mc Kevitt 2003 32

SC

Latvia

AC C

EP

TE D

M AN U

ref: reference, si: semi-structured interviews, fi: focusgroup interviews, obs : observations

7

RI PT

ACCEPTED MANUSCRIPT

Corresponding quantitative findings

M AN U

Themes

SC

Table 2 Themes derived from qualitative data synthesis and corresponding quantitative evidence found

- Participation in activities (LIFE-H) was significantly correlated to level of impairments (r = 0.63), age (r = - 0.46) and environmental Theme 1.

barrier scores (r = 0.42). In a multivariate model these factors together explained 58.9% of the total variance of the LIFE-H. The person and the environment

Environmental barriers accounted for 6.2% of the variation, age for 14.4%, and level of impairments 38.3%. (Rochette 2001).

TE D

together shape reengagement.

50

Combination of driver status, gender and social support together were significantly related to community integration (CIM) ( F(1, 80) = 7.49, p = 0.008, partial η2 = 0.09) Women non-drivers with low social support fared particularly poorly, especially as compared to women

EP

and men drivers (Griffen 2009).51

- Although affected by environmental influences at a similar level, for reengagement into valued activities elder patients were more

AC C

dependent on products and technology for mobility and transport than were younger patients. (In elderly with free access to mobility and transport devices the relative difference between performance (ICFperf) and capacity (ICFcap) was > 0 (mean ± SE:8.3 ± 2.7 %; t = 3.030, P<0.005) meaning the whole environmental influence on the daily activity performance was supportive for these patients (Chang 2014).

52

1

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Theme 2.

RI PT

Reengagement, an iterative

Theme 3.

SC

process.

- Significant differences in activity profiles between two American cities of two comparable groups of stroke patients were found. This was assumed to be related to differences in sociocultural atmosphere (statistical significant differences were noted for 8 out of 16 activities of

context.

the PFALP; P>0.05) (Wallace 2010).

Theme 4.

34

-

TE D

The value of familiar

M AN U

The impact of the sociocultural

EP

environments.

- Caregiver psychosocial functioning and stroke severity/ activity recovery seemed to inversely influence each other: 1) 83,3% of the Theme 5.

2003). as mediators.

53

AC C

patients had a decline in sexual activity, 88,7% of their partners reported not being keen to have sex with a sick person (smq) (Giaquinto Social support and reciprocity

2) stroke severity was related to caregiver burden with 10,8% shared variance, caregiver sense of coherence was related to

patients daily functioning (SIS) with 22,4% shared variance (Perrin 2008).

54

2

ACCEPTED MANUSCRIPT

Theme 6. -

RI PT

Environmental obligations and opportunities.

- Subjective social support, in contrast to instrumental support, moderates the relation between functional limitation and participation in

SC

Theme 7. The social context as a

55

- Social support did not influence the relationship between disability and participation (LHS) in valued activities: it was assumed that the

M AN U

moderator to reengagement

2

valued activities (RNL, p = 0.008, model accounted for 33% of variance, R = 0.33) (Beckley 2006)

moderating effect of social support might have been masked by overprotection of others (Gottlieb 2001).

56

- Spouses overprotection was not found to significantly decrease patients activity levels (smq) (Atler 1989).

57

- Social support partly buffered the effect of driving cessation on community integration; drivers with high social support showed better

Theme 8. -

AC C

The physical environment and accessibility.

Theme 9.

51

EP

2009).

TE D

community integration (CIM) than did non-drivers and drivers with low social support although the effect was not significant (Griffen

-

Physical resources.

3

ACCEPTED MANUSCRIPT

LIFE-H; Assessment of Life Habits, CIM; Community Integration Measure, ICF perf/cap; Performance and capacity score as defined in the ICF, RNL; Reintegration to Normal

AC C

EP

TE D

M AN U

SC

RI PT

Living Index, LHS; London Handicap Scale, smq; self-made questionnaire, SIS; Stroke Impact Scale, PFALP; Profile of Functional Activities and Life Participation.

4

AC C

EP

TE D

M AN U

SC

RI PT

ACCEPTED MANUSCRIPT

AC C

EP

TE D

M AN U

SC

RI PT

ACCEPTED MANUSCRIPT

ACCEPTED MANUSCRIPT Supplement

RI PT

Title: The impact of environmental factors on resuming valued activities post-stroke: A systematic review of qualitative and quantitative findings.

Complete search strategy used for PubMed for the period of June 1983- June 2015 (initial search to June 2013, additional search to June 2015):

AC C

EP

TE D

M AN U

SC

Search ((((home OR community OR school OR work OR outdoor* OR out of doors OR traffic OR transport OR public OR social OR context* OR environment* OR social environment[Mesh] OR environment[Mesh] OR service OR geograph* OR ecolog* OR cultur*)) AND (disabilit* OR disabl* OR participat* OR reintegrat* OR handicap* OR perform* OR functioning OR incapable OR capable OR abilities OR ability OR engage*)) AND (((stroke[MeSH Terms])) NOT ("Stroke/blood"[Mesh] OR "Stroke/cerebrospinal fluid"[Mesh] OR "Stroke/chemically induced"[Mesh] OR "Stroke/congenital"[Mesh] OR "Stroke/drug therapy"[Mesh] OR "Stroke/embryology"[Mesh] OR "Stroke/enzymology"[Mesh] OR "Stroke/etiology"[Mesh] OR "Stroke/genetics"[Mesh] OR "Stroke/immunology"[Mesh] OR "Stroke/metabolism"[Mesh] OR "Stroke/microbiology"[Mesh] OR "Stroke/parasitology"[Mesh] OR "Stroke/radiography"[Mesh] OR "Stroke/radionuclide imaging"[Mesh] OR "Stroke/radiotherapy"[Mesh] OR "Stroke/ultrasonography"[Mesh] OR "Stroke/urine"[Mesh] OR "Stroke/veterinary"[Mesh] OR "Stroke/virology"[Mesh]))) AND (human activities[Mesh] OR education[Mesh] OR transportation[Mesh] OR mobility OR work OR employment OR volunteer OR activities of daily living OR leisure OR self care OR family functioning OR family life OR relationship* OR social functioning OR food OR communication) Filters: Humans; English; Adult: 19+ years