Living and ageing with stroke: an exploration of conditions influencing participation in social and leisure activities over 15 years

Norlander, Anna; Iwarsson, Susanne; Jönsson, Ann-Cathrin; Lindgren, Arne; Lexell, Eva Månsson

doi:10.1080/02699052.2018.1463561

Cited by 36 publications

(50 citation statements)

References 42 publications

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“…Participation in everyday life is a complex area to investigate [7] with subjective aspects that need to be taken into account when they are described and evaluated. Personality, preferences, environmental factors, and personal health conditions are examples of important areas that can impact on how a person describes their participation [26]. However, our results showed that in spite of differences, obvious similarities were seen in participants’ reflections about participation in the activities of their choice.…”

Section: Discussionmentioning

confidence: 59%

Long-term participation 7-8 years after stroke: Experiences of people in working-age

2019

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ObjectiveTo enhance the understanding of long-term participation in working-aged people 7–8 years after stroke.MethodsThis study had a qualitative design, using a thematic analysis methodology. Eleven individuals took part in an in depth interview 7–8 years after a first time stroke. They had received care at the Sahlgrenska University Hospital in Gothenburg, and were recruited as a heterogenic sample with respect to age, gender, stroke severity and subtype.ResultsFrom the participants’ experiences four themes emerged: “Returning to work after stroke”; “Working life 7–8 years after stroke”; “Social life 7–8 years after stroke”; and “A state of reorientation in life”. Quotes about experienced participation in everyday life were summarized and presented as “Participation after stroke narratives”. Participants chose to emphasize on work- and social life when describing situations of successful participation. Being included in the wider community and having a sense of purpose, when interacting with others, were factors that these narratives had in common. Participants had gradually become accustomed to a somewhat altered life situation. Some consequences after stroke were still considered frustrating in social or work situations. However, the importance of these issues had reduced and were no longer problematized.ConclusionsParticipants felt content with their everyday life in general, which was a principal and positive result of this study. Reaching a stage of acceptance seemed to be a complex and continuous struggle, and an individual approach in long-term rehabilitation would be valuable to support this personal process. More knowledge about what factors that facilitate participation in people of working-age many years after stroke is needed, so that more people can reach a state of positive identity and participation.

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Section: Discussionmentioning

confidence: 59%

Long-term participation 7-8 years after stroke: Experiences of people in working-age

2019

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“…However, knowledge about other aspects that are related to places outside the home and how these associate with whether participation is retained or abandoned is scarce. Research studies have indicated that the perceived distance to the place, the familiarity of the place and the familiarity of the way to the place influence participation and encourage more extensive studies [17]. We also lack knowledge about the activity domains for the places as well as the types of places that people with stroke retain or abandon, that is, if certain domains or types of places are more influenced of changes.…”

Section: Introductionmentioning

confidence: 99%

“…However, a common consequence for people with stroke is that the person loses their driver's license [12,13], which means that other forms of transportation [14,15] or support from others for transportations is needed [16]. The use of public transportation can also be challenging for people with stroke [8,9,14,17]. Access to a social network that facilitates common activities and provides support to engage in those activities when needed also influences participation [17,18].…”

Section: Introductionmentioning

confidence: 99%

“…The use of public transportation can also be challenging for people with stroke [8,9,14,17]. Access to a social network that facilitates common activities and provides support to engage in those activities when needed also influences participation [17,18]. Consequently, place of residence, transportation and being accompanied by someone are important for activities outside home.…”

Section: Introductionmentioning

confidence: 99%

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

Malinowsky

Olofsson

Nyman

et al. 2019

Scandinavian Journal of Occupational Therapy

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Background: Being engaged in activities in places outside the home after a stroke can be challenging. Knowledge about what characterize places outside the home is important to support participation. Objectives: To explore patterns of participation in places for activities outside the home after stroke and whether these patterns were associated with personal and environmental aspects. Material and methods: Sixty-three people with stroke were interviewed using the Participation in Activities and Places Outside Home (ACT-OUT) questionnaire. A two-step cluster analysis was used to identify patterns of participation and non-parametric test was used to explore potential associations to the patterns of participation. Results: Four clusters of patterns of participation, based on frequency, familiarity of the place/ the way to the place and perceived distance, were identified. The patterns were significantly associated with type of place, activity domain, retained or abandoned participation, transportation and being accompanied by someone. The severity of disability was significantly associated with groups of individuals with different patterns of participation. Conclusions: Different combinations of aspects facilitated and hindered whether or not participation changed. To support people with stroke in their endeavour to retain or recapture participation, social support is important to consider in relation to transportation, activities and places outside the home.

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“…Items were missed within the following ICF domains: domestic life, interpersonal relationships, economic life, recreation, community life, and social and civic life [8]. Previous research supports that participation constitutes a variety of subdomains [21][22][23]. Previous research has also found the PROMIS® item bank did not cover all subcategories of the ICF [24].…”

Section: Introductionmentioning

confidence: 99%

Proposal to extend the PROMIS® item bank v2.0 ‘Ability to Participate in Social Roles and Activities’: item generation and content validity

et al. 2020

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Purpose Previous research indicated that the Patient-Reported Outcomes Measurement Information System (PROMIS®) item bank v2.0 ‘Ability to Participate in Social Roles and Activities’ may miss subdomains of social participation. The purpose of this study was to generate items for these missing subdomains and to evaluate their content validity. Methods A three-step approach was followed: (1) Item generation for 16 International Classification of Functioning Disability and Health subdomains currently not covered by the item bank; (2) Evaluation of content validity of generated items through expert review (n = 20) and think-aloud interviews with a purposeful sample of people with and without (chronic) health conditions (n = 10), to assess item comprehensibility, relevance, and comprehensiveness; and 3) Item revision based on the results of step 2, in a consensus procedure. Results First, 48 items were generated. Second, overall, content experts indicated that the generated items were relevant. Furthermore, based on experts’ responses, items were simplified and ‘participation in social media’ was identified as an important additional subdomain of social participation. Additionally, ‘participating in various social roles simultaneously’ was identified as a missing item. Based on the responses of the interviewed adults items were simplified. Third, in total 17 items, covering 17 subdomains, were proposed to be added to the original item bank. Discussion The relevance, comprehensibility and comprehensiveness of the 17 proposed items were supported. Whether the proposed extension of the item bank leads to better psychometric properties of the item bank should be tested in a large-scale field study.

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Living and ageing with stroke: an exploration of conditions influencing participation in social and leisure activities over 15 years

Cited by 36 publications

References 42 publications

Long-term participation 7-8 years after stroke: Experiences of people in working-age

Long-term participation 7-8 years after stroke: Experiences of people in working-age

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

Proposal to extend the PROMIS® item bank v2.0 ‘Ability to Participate in Social Roles and Activities’: item generation and content validity

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