Affiliations: Department of Health Sciences, Faculty of Medicine, Lund University, Sweden
Correspondence:
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Correspondence to: Maria H. Nilsson, Department of Health Sciences, Lund University, Box 157, SE-221 00 Lund, Sweden. Tel.: +46 46 222 30 34; Fax: +46 46 222 1808; E-mail: maria_h.nilsson@med.lu.se
Note: [1] Equal contribution.
Abstract: Background:Activity performance is marked by the degenerative nature of Parkinson’s disease (PD), but few qualitative studies have focused on how people with PD perceive participation in life situations. Objective:To identify and describe barriers and facilitators for participation from the perspective of people with PD. Methods:Qualitative data was obtained by the focus group method using a semi-structured interview guide. Participants were recruited by purposeful sampling until saturation was reached. Homogeneity within each focus group was based on self-rated PD severity (mild, moderate, severe). Nine focus groups (three per PD severity level) included a total of 29 participants. Results:Complex dynamics between the individual and the physical and social environment create barriers and facilitators for participation as described in the four categories which emerged out of the focus group discussions. The category Ambiguity of attitudes and the support of others describes how attitudes and support of other people act both as facilitators and barriers for participation. PD specific complexity of the body and physical environment interaction describes barriers for participation. Facilitators emerged in the two categories PD expertise in health care and social services and Information and education foster PD specific understanding. Conclusions:Our findings imply several potential means to facilitate participation for people with PD, taking the person as well as the environment into account in person-centred interventions. This involves aspects such as having access to PD specific expertise, increasing the knowledge and thereby the understanding of PD as well as providing support for maintained work-life.
Keywords: Activities, education, environment, falls, family, knowledge, patient involvement, self-help devices, transportation, work
