Barriers and Facilitators for Participation in People with ... - IOS Press

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Journal of Parkinson’s Disease 5 (2015) 983–992 DOI 10.3233/JPD-150631 IOS Press

Barriers and Facilitators for Participation in People with Parkinson’s Disease Maria H. Nilsson∗ , Susanne Iwarsson1 , Björg Thordardottir1 and Maria Haak Department of Health Sciences, Faculty of Medicine, Lund University, Sweden

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

INTRODUCTION Starting out from the functioning, disability and health perspective, participation is most commonly defined as ‘involvement in a life situation’ [1] and embedded in a diverse and often complex context of everyday life [2]. Ageing with a progressive chronic disorder may add to this complexity with specific challenges such as progressive or sudden decline in functioning that causes unpredictability regarding participation [3, 4]. 1 Equal

contribution. to: Maria H. Nilsson, Department of Health Sciences, Lund University, Box 157, SE-221 00 Lund, Sweden. Tel.: +46 462 223 034; Fax: +46 462 221 808; E-mail: maria h.nilsson@ med.lu.se. ∗ Correspondence

Parkinson’s disease (PD) is a chronic and progressive neurological disease with negative consequences on major aspects of health. Cardinal symptoms are hypo- or bradykinesia, resting tremor, rigidity and postural instability [5]. Non-motor symptoms are also common and include cognitive and autonomic dysfunction, fatigue and depression [6]. For people with PD, activity performance is marked by the degenerative nature of the disease, and the progressive functional decline leads to diminished independence [7]. Being able to walk independently has been described as a prerequisite for leading an autonomous life and participate in society [8]. Raggi et al. suggested that limitations in activities and participation among people with PD are more associated with impairments (i.e. body functions) than environmental factors. Environmental factors can act either

ISSN 1877-7171/15/$35.00 © 2015 – IOS Press and the authors. All rights reserved

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as facilitators or as barriers [9]. Such examples are social support and the features of the physical environment [10]. One study that targeted community walking found that external factors (e.g. being in crowded places) were prime barriers [11]. There has been an increasing interest in identifying barriers and facilitators for exercise in people with PD, using quantitative [12, 13] or qualitative study designs [10, 14–17]. One such study identified expectations, lack of time and fear of falling as barriers to physical exercise [13]. Although these findings contribute to the body of knowledge on participation among people living with PD, there is a need for research that focuses on barriers as well as facilitators for participation in a more comprehensive way. In fact, few qualitative studies have had its prime focus on perceived participation in people with PD. In a previous study we [18] identified important aspects for perceived participation among people PD, showing participation as embedded in a complex context including social situations as well as tangible activity performance. A further step is needed to elucidate perceived barriers as well as facilitators for participation among people with PD. While seldom explicitly targeted in PD-research, to validly target participation in life situations also contextual factors and settings must be taken into account. The influence of diverse contexts such as home, work or the community at large has to be considered. Starting out from the perspective of the International Classification of Functioning, Disability and Health (ICF), contextual factors include personal and environmental factors [1]. Utilizing insights generated in other research areas there are theories that more explicitly consider person-environment relationships. The most well-known example within ageing research is Lawton Nahemow’s Ecological Theory of Ageing (ETA) [19]. Described in the ETA, the docility hypothesis stipulates that the lower the competence (i.e., including the functional capacity) of the individual the more vulnerable he/she is to the press exerted by the environment. An explorative study showed that person-environment fit problems among people with self-reported PD to a high extent are caused by a higher number of functional limitations [20]. Studying people living with a progressive chronic disease as PD such a perspective should be useful to gain further insights regarding barriers and facilitators for participation. When addressing participation it is of importance to ask people with PD about their thoughts and experiences [21]. Accordingly, the aim of this study was to identify and describe barriers and facilitators for participation from the perspective of people with PD.

MATERIAL AND METHODS In order to deepen the knowledge and understanding of the phenomenon under study, the focus group method [22] was used to obtain perceptions of the given topic through group discussions. Focus groups are explorative in nature and the group discussion is explicitly used as a means to generate data. The participants are encouraged to share their experiences, ask each other questions and express their thoughts, attitudes, opinions and understanding. In order to create a forum for exchanging ideas and perceptions of participation, the composition of focus groups was aimed to fulfil criteria to capture similarities (i.e. homogeneity) as well as differences among the participants (i.e. heterogeneity) on predefined characteristics [23]. Participants and Recruitment Participants were recruited at the Department of Neurology at Sk˚ane University Hospital, Sweden. As all the potential participants had regular follow-ups at the Department of Neurology they were well characterized (patient record documentation) and well known; the recruitment was done with the assistance of a specialized PD nurse. Excluded were those with dementia or those unable to understand written and spoken Swedish. A purposeful sampling strategy [24] was used to create homogeneity and heterogeneity in each focus group and data collection continued until saturation was achieved [23]. Homogeneity was based on self-rated PD severity, defined as “mild”, “moderate” or “severe”. Heterogeneity was based on age, living arrangements (living alone or cohabiting), education and employment. The participants that agreed to participate in the study were asked study-specific questions in order to arrive at homogeneity and heterogeneity within the groups. These questions targeted: living arrangements (cohabiting/living alone); number of children and whether they were still living at home; work-situation (e.g. full-time, part-time, unemployed or retired); level of education (primary school, secondary school, college/university); use of assistive devices (e.g. cane, rollator, wheelchair) indoors and outdoors, respectively; self-rated PD severity (mild, moderate or severe); fluctuations (yes/no), and whether they had experienced any falls in the previous six month (yes/no). Letters introducing the study were initially sent to 50 persons with PD; they subsequently received a phone call for verbal information and the opportunity to confirm or decline participation in the study. Thirteen


individuals declined to participate and four were not possible to reach. When scheduling the focus groups, 13 of the participants were unable to attend; the remaining 20 participants were grouped into six focus groups. A second round of recruitment was needed to reach saturation; nine additional persons were contacted and all of them agreed to participate in the study. The final sample consisted of 29 (16 men) participants. Their mean age was 68 years (min-max = 53–81 years), and their mean PD duration was 11 years (min-max = 2–38 years). See Table 1 for a description of the sample. This project was accomplished in accordance with the Helsinki Declaration of 1975; it was approved by the Regional Ethical Review Board in Lund (No. 2012/126) and all participants provided written informed consent. Procedure A written and standardized introduction was prepared to be verbally presented by the moderator when introducing each focus group. This introduction focused on the aim of the study, practical and ethical issues (e.g. confidentiality) and stressed that the participants were considered as experts on the issues to be discussed. A semi-structured interview guide, published in a previous study [18] was developed by the research team. Each focus group started with an initial question: “What goes through you mind when you hear the word participation?” The discussion then continued based on interview themes in relation to participation framed in the context of work, social

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contexts such as family, friends, professional relationships, carer-patient relationships and leisure time, but also in relation to person and environment interactions. The themes were concentrated on the following key questions: “In which situations and contexts do you consider it important to participate?”; “In your experience, how does PD affect your ability to participate?”; “Considering PD, what would make it easier for you to participate?”; “What makes participation more difficult when having PD?”; “Which means do you consider to be important in order to make participation easier for people with PD?” One moderator and one observer led each focus group session. Two experienced researchers (MH, MHN) acted as the moderator in four and five focus group sessions, respectively. The observer (BT) took part in all the group sessions. Member checking was done at the end of each session when the observer briefly summarized core issues of the discussions, allowing the participants to immediately comment and suggest clarifications. In total, nine focus groups were conducted; three groups for each self-rated PD severity level. We strived for four participants per group since it has been recommended to use smaller groups when involving frail participants [25]. Since cancellations with short notice can be expected when working with chronically ill participants, we did invite more than four participants per focus group. As expected some participants were unable to attend as planned due to travel practicalities or sudden health concerns. Consequently, we ended up having two to five participants per group.

Table 1 Sample characteristics, n = 29 Self-rated PD-severity Characteristic

Mild n = 11a

Men, n (%) Age, years, mean (SD) PD duration, years, mean (SD) Cohabiting (Yes), n Education, n Primary/Secondary/College, university Type of housing, n Apartment/house/other Employment, n Full-time/part-time Retired/ sick leave Falls past 6 months (Yes), n Fluctuations (Yes), nd Mobility devices indoors (Yes), n Mobility devices outdoors (Yes), n

7 (64) 64.5 (6.2) 8.1 (5.9) 10

Moderate n = 10b 6 (60) 72.4 (6.0) 9.8 (5.8) 8

Severen = 8c

Total sample n = 29

3 (38) 66.8 (1.8) 16.8 (10.2) 8

16 (55) 67.8 (6.2) 11.1 (7.9) 26

2/2/7

1/4/5

1/3/4

4/9/16

2/8/1

2/8/0

2/6/0

6/22/1

3/1 5/2 3 8 0 0

0/0 9/1 4 7 2 6

0/0 8/0 5 5 6 7

3/1 22/3 12 20 8 13

PD = Parkinson’s disease. SD = standard deviation. a Three groups of 5/3/3 participants respectively. b Three groups of 4/3/3 participants respectively. c Three groups of 2/3/3 participants respectively. d A dichotomous (Yes/No) question targeted a fluctuating effect of anti-PD medications, with periods of more severe symptoms. Two out of the three with severe PD that reported no fluctuations had pump therapy.

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The duration of the focus group sessions varied from 68 to 109 minutes (mean = 90). The focus group discussions were recorded and transcribed verbatim by the observer or a skilled secretary. Data analysis As the interview guide was comprehensive and results elucidating perceptions of important aspects of participation based on disease severity were published in a previous study [18], the subset of interview themes targeting barriers and facilitators for participation constituted the focus for the present study. Accordingly, for the data analysis we used data on participants’ perception of barriers and facilitators in relation to participation, regardless of disease severity. The data analysis followed the analytical framework of constant comparative analysis as suggested by Krueger [23]. In order to get a sense of the whole, three of the authors of this paper listened through all of the recordings and read the transcripts. Two of the authors (BT and MH) then identified data sections relating to the research question as focus areas for the present paper. This was done separately by the two authors to validate the identified data sections. Next, in an iterative process, the first and last authors systematized the selected data sections into emerging categories, and descriptive statements were written. Emerging categories derived directly and inductively from the raw data. In the interpretation step that followed, the descriptive summaries were abstracted into an interpretative text in a joint analysis process that engaged the first and last authors. The two authors went back to data iteratively to check the reliability of categories. That is, it was done to ensure that meanings that emerged from participants’ context were accurately reflected in categories. The data analysis was fully accomplished in Swedish [26]. In a last step, authentic quotes were identified to increase the trustworthiness of the findings. Quotes were translated from Swedish to English by a professional translator. Finally the two other authors (SI and BT) critically read and commented on the findings. RESULTS The analysis of the data from the focus group discussions resulted in four categories. The category Ambiguity of attitudes and the support of others describes facilitators as well as barriers for participation. Various barriers that negatively affected participation were discussed in the category PD

specific complexity of the body and physical environment interaction. In relation to facilitators two categories emerged, PD expertise in health care and social services and Information and education foster PD specific understanding. An all-pervading issue throughout the categories is the complex dynamics and interactions between the individual and the physical and social environment that participants experienced to influence participation at home, at work and in leisure. Ambiguity of attitudes and the support of others Elucidating the influences of the social environment on participation, the practical and mental support provided by family and friends was described as a facilitator. Examples given were that family and friends acted as chauffeurs or motivators: P11: yeh (draws it out), I don’t sleep a lot at night and it takes time in the morning before I’m ready, showered and stuff, so by then it’s 10 or so, it’s a bore. And I, of course I have to have someone helping me, that’s my husband these days otherwise I couldn’t manage it . . . and I can’t go out on my own. I’ve done it a few times but it’s not such a good idea... I stagger a bit when walking and people think I’m on drugs or goodness knows what, but my husband drives me where I want to go . . . do you get the help and support you need from (your wife) ? P10: if I get it? Yes I guess I do, I guess you could say I get help and support I need...but...it’s not always given very cheerfully (P11 nods in agreement). P11: no, they can get irritated of course . . . you have to understand that. P18: sometimes I might you know feel tired or I have no energy to get up and do something, like. In those cases my family are the most important, they pull me through ”come on, up we get”, ”let’s go for a swim” sort of thing ”let’s go now” and when I say, ”oh I’m tired” then [my family say] “doesn’t matter, we’re going anyway” then it’s “ alright then”, I think that’s REALLY important . . . you know Moderator: to have someone who pushes you? P18: yeh exactly, yeh . . . P19: yes, just go out for a walk . . . P18: exactly like, just a walk


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P19: someone who says: “ come on we’re going for a bit of a walk”

PD specific complexity of the body and physical environment interaction

P18: right

Barriers in the physical environment in combination with PD specific features relating to the body were expressed as hindering mobility and participation in everyday life situations and society at large. Being dependent on others or public transportation in order to take part in activities were perceived as barriers for participation. Using public transportation was described as complicated as it requires many and complicated actions. That is, just getting to the bus stop or train station, handling a credit card, buying a ticket from a ticket machine, or having to wait in a crowded line in order to board the bus or train were barriers described. These situations provoked stress and triggered PD specific features such as freezing episodes, a fall, or going into an OFF-phase. Such challenges, resulting in negative influences on behaviour exerted by environmental press, are illustrated by the following quote:

P19: or bike ride... On the other hand, the participants described how meaningful activities could be limited and participation thus restricted by the attitudes of partners, family members, friends, employers and colleagues. Such attitudes could be manifested as an exaggerated concern, by being too helpful or not being sensitive enough. P16: I sometimes think people help me out a bit TOO much . . . . . . I’d like to join in stuff on the same conditions. The attitudes of others as barriers for participation were especially highlighted in relation to work. A major barrier was evoked when others decided about your work capacity without involving you. To communicate with employers and officials representing the Swedish Social Insurance Agency was expressed as being difficult because such authorities were described as having predetermined perceptions about the individual’s work capacity. Not feeling needed, valued or competent at work due to the disease was perceived as a barrier for participation. Stopping work involuntarily was seen as a big loss and even expressed as the most significant loss due to the disease. On the other hand participants expressed how they actively had avoided the scenario of being forced to quit work. When they felt they could not manage their ordinary tasks satisfactorily and no qualified alternatives were at hand, quitting work voluntarily was described as one alternative, as illustrated by the following quotes: P13: no . . . and when I said I was sick the noose started to tighten around my neck straight away and then there was a hell of a scrabble to decide who would take over my job and all sorts. So that was really hard... and I felt I don’t have any chance to... I had no opportunity for participation at all. They had decided I was sick and now I was on my way out. P12: For me it wasn’t like that . . . I felt that after a while, if I stayed I would get discriminated against and just get the boring jobs . . . so I avoided that by quitting rather than becoming an object as it were, and getting a load of stress and special treatment.

P24: when there are a lot of people in the queue . . . so that you have to stand and wait then, your brain kind of stops . . . P26: yeh . . . P24: everything stops working . . . then you can be very off, even though really you aren’t . . . P25: . . . when there are too many people standing there I fall . . . I just can’t stand up . . . it feels like they are on top of me and then I fall . . . On top of such challenges, physical environmental barriers such as uneven pathways, heavy doors and stairs added to the environmental press and the complexity of being mobile in society: P28: yeh, you should be able to get in . . . she (the hairdresser) has got stairs so you can’t get down there . . . one time I couldn’t and it’s like . . . a disadvantage, isn’t it . . . P27: we have a gate that locks where I live . . . with a code . . . and it’s so heavy that I’ve got stuck several times with my rollator and then I get cramp and can’t move at all . . . PD expertise in health care and social services Access to staff with PD expertise was identified as an important facilitator for participation when available, but this kind of competence was seldom available in

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the health care and social services used by the participants, resulting in fewer opportunities for participation. Services developed specifically for people with PD such as speech training or physical exercise programs led by healthcare staff with expert knowledge in PD were identified as rare but important for participation. Other social services, explicitly targeting environmental aspects and adapted to the needs of people with PD were asked for as well, for example, housing adaptation counselling, provision of assistive devices and home help services. The participants expressed that services without sufficient PD expertise cannot be used optimally, and the lack of access to such expertise was perceived as a barrier for participation. P25: . . . when I had some trouble with my balance and that, I couldn’t stand and wait by the machines (at the local gym), until the person using them had finished . . . so in the end I stopped going . . . so I haven’t been to the physiotherapist for a year now . . . I just use the cycle machine at home but it’s not the same, is it? . . . when I used to see the physiotherapist it was good. Being able to gain specific knowledge about the disease and try out new activities among others with PD was identified as a facilitator. Engagement in a PD association was mentioned as one of these arenas: ( . . . ) P2: then you can get ideas from your fellows, colleagues almost, little tips and tricks to make life easier. And you see that you’re not the only one with the problem... but we have tried to get hold of the people who are most inactive but that’s not so easy, offered to fetch them to the meetings...but it’s kind of if they say they don’t want to, then they don’t want to... P3: you know there’s . . . you do know about this conference at (conference centre), have you been there? I went once. P4: I’m going in September. P3: yeh we plan to go too, you know this participation stuff is great, there you do participate in all the information that comes, and I think the PD association does a great job keeping all us members informed about what’s happening, and it’s good the way they invite 7–8 speakers and we are there all weekend, Friday to Sunday and we can take part in all the activities...or just the talks, whatever...you meet a lot of people with Parkinson’s . . .

P2: . . . yes it’s highly recommended . . . I’d say . . . often . . . for example that yoga course was adapted specifically for Parkinson’s. Now we’ve got this new thing happening, tango and Parkinson’s (mmm) all that stuff about sense of rhythm is really important in Parkinson’s. Information and education foster PD specific understanding The participants expressed how information and education that foster knowledge and awareness among people in general would render an increased understanding of PD specific needs, facilitating participation in everyday activities. This was perceived as important since the impact of PD stretches far beyond the obvious physical signs. For example, reduced stress tolerance and fatigue were expressed as invisible consequences of the disease. The facilitating value of having a flexible employer with acceptance and knowledge about the disease was explicitly discussed. Increased PD specific knowledge among people encountered in everyday life, for example, family, friends, colleagues and leaders at workplaces and supermarket cashiers, was identified as an important facilitator with potential to support participation for people with PD. The participants also expressed how they themselves could partake in fostering an increased awareness of PD; they could serve as advocates and contribute to knowledge dissemination: P26: yeh, the thing is the people who meet people like us have an understanding of the disease . . . so that in turn means you have to educate people who work at the supermarket checkout and such . . . something like that . . . who take the money, shop assistants, how Parkinson’s affects people . . . how you might behave and what problems and what advantages and disadvantages they have . . . sometimes you find a really smart cashier who . . . reacts well to you being Parkinson’s and reaches out their hand and takes the cash . . . but sometimes it’s like . . . they don’t do that and you think,; “Jesus, what a horrible cashier . . . ”

DISCUSSION The description and identification of barriers and facilitators to participation provided by this study adds to the body of knowledge on how to promote participation in people with PD. In order for people with PD to


participate on equal terms with the general population, they request an increased knowledge about PD among people in general as well as increased access to PD expertise among staff in health care and social services. Although similar aspects have been raised in relation to other neurological diagnosis [27], our study shed some light on a wide variety of facilitators and barriers for participation in everyday life from the perspective of people with PD. Making use of an explicit person-environment interaction perspective as put forth in the ICF [1] as well as the ETA [19] for the interpretation of our findings, the influence of the social as well as the physical environment stands out as a theme cutting across the four categories. That is, many of the barriers and facilitators described and discussed by the participants are per definition environmental features, let be of very different character. In order to develop novel interventions it might be helpful to clearly delineate the mechanisms that underlie the challenges to participation coming with PD, thus elucidating the potential to attain positive effects by specific action towards environmental factors. Importantly, PD-specific features such as motorand non-motor symptoms (e.g. freezing, falls, fatigue) were also described as barriers for perceived participation. Targeting the situation of people living with a progressive disease without the possibility for cure, multimodal interventions might hold more potential than hitherto unleashed. Barriers and facilitators in relation to work were vividly discussed. Participation in working life is known to be very important for self-identity [28] and life satisfaction [29], in the present study demonstrated by the fact that some participants expressed that having to involuntarily quit work was among the losses of most concern. As to participation in work after obtaining a PD diagnosis, the mean time to loss of employment is about five years [30, 31]. Within the first couple of years, full time employment is rarely possible without any adjustments [32]. Our participants expressed that as long as it is possible to contribute with satisfaction, it is valuable being able to maintain employment in order to facilitate participation. The participants underlined that this requires a flexible employer with acceptance and knowledge about the disease, thus linking also to the Information and education foster PD specific understanding category of the results. These findings are supported by Banks and Lawrence [30], who report that those with a supportive employer work significantly longer after their PD diagnosis than those without such support. Since support received from the employer seems to be of spe-

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cific importance for the opportunity to stay in work, our results indicate that there is a need for individual solutions based on the specific characteristics of PD. In fact, several of our findings are in line with a model for dimensions of work ability (Work Ability House) which includes both personal and environmental factors such as support by others and attitudes [34, 35]. While some research on participation in work after a PD-diagnosis does exist, the present study highlights the need for more research as well as the development of support for people with PD to remain in the work force or find alternative meaningful activities. The PD association was mentioned as one supportive arena for trying out new activities while family and friends were described as motivators for activity performance for social participation in general. Social participation outside the home has earlier been associated with better self-rated health and high degree of perceived participation in adults [33, 34]. Moreover, other studies even indicate that social participation reduces the risk of developing disability [35] and delays dependence in activities of daily life [36]. As these are findings of participation among older people in general regardless of presence of disability, more research on supportive environments and identity integration among people ageing with physical disability is warranted [37]. Our participants stressed the importance of having access to PD specific expertise and especially so in relation to training but also when needing assistive devices. The ParkinsonNet in the Netherlands is one example of how to use a patient centered approach and to address the need for PD specific expertise [38]. The core elements of ParkinsonNet involve: delivering care according to evidence-based guidelines; continuous education and training delivered by skilled therapists representing different professional competencies; structured referral to ParkinsonNet therapists; encouraging communication and collaboration, and promoting the visibility of experts within the network. In addition, an information technology platform supports both patients and health professionals. However, although the ParkinsonNet approach has been associated with reduced costs of care it has not been associated with improved clinical outcomes [39]. Main challenges have been to obtain sustainable funding but also the criticism from those health professionals that were not selected to take part [38], whether this kind of approach is applicable also in other national and cultural contexts remains to be evaluated. Further studies are thus needed and optional models may need to be developed and scientifically evaluated.

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Although the organization of care is an important avenue for future research, a recent study showed that the top ranked research priority for the management of PD was to identify treatments that are helpful for reducing balance problems and falls in people with PD [40]. Our participants expressed that using public gyms was problematic due to their balance problems, which may be of importance when designing such future studies. In relation to the scope of the present paper, it needs to be noted that participation was among the most important conceptual areas identified for outcome measurement in clinical PD trials [41]. Reflecting upon the knowledge generated by the present study from an overall perspective, it might be of interest to link to the evolving body of literature regarding the role of participation for quality of life. For example, based on a small stroke sample a recent study demonstrated that health-related quality of life instruments correlate strongly with participation components as defined in the ICF [42]. Moreover, the results of a previous concept mapping study suggested that both people with PD and health care professionals regarded quality of life to be associated with aspects of social functioning and participation [43]. The conceptual association of participation and quality of life is a topic of universal interest and warrants further research attention, not only regarding PD but for many diagnose groups. While important aspects of participation were highlighted in our previous study [18], more comprehensive descriptions of physical, social barriers and facilitators are now at hand. Barriers in the physical environment, especially when using mobility devices may increase the complexity of person-environment interactions, not only for people with PD or other diagnoses but also for the older general population [44]. The barriers for use of public transportation among people with a disability have also previously been described [45] and hopefully city-planners are becoming more aware of available directives [46]. However, the present study highlights challenges due to PD specific traits such as an increased fall risk and OFF-periods, etc. This kind of knowledge is important, but more research is needed to elucidate how the person and environment components contribute to accessibility problems [20] and participation restrictions in PD. As to methodological considerations, it would have been desirable to have descriptive information on co-morbidities and more detailed information of impairments among the participants. Besides their potential impact on the participants’ perceptions of par-

ticipation, for example communication impairments might have had an impact on the ability to engage in the focus group discussions. Moreover, one might argue that PD severity should have been clinically assessed instead of using self-ratings. Since our project explicitly focused on how people with PD perceive their situation, self-rated PD severity was deemed as an appropriate approach. The current study is in line with studies of participation among people with disability in general [27]. However, the complexity of PD was described as hampering participation and the participants underlined the importance of having PD specific expertise in services and health care. Interpreting the finding of the present study, overall it is important to bear the specific characteristics of qualitative research in mind. That is, applying a qualitative approach to sampling, the findings can be considered transferable to individuals in similar situations but should not be generalized to the study population at large [24]. Also, it should be noted that despite conscious adaptation of the methodology to the situation of people with PD we are missing the voices of those confined to the home and thus unable to attend a focus group session. That is, although we did include participants that self-rated their PD as severe, no individuals confined to home were included. Accordingly our findings should not be regarded as transferable to people with PD that are confined to the home. As to the number of participants in the focus groups, even if somewhat larger groups have been recommended by Krueger [23], taking the vulnerability of people with severe PD into account we used a somewhat smaller group size [25]. This was done to promote the active input by all group members due to the known fact that people with PD may have communication impairments, and seemed to work out well. However, to accommodate the most vulnerable segment of the PD population the focus group sessions could have been arranged in relevant community settings. That is, not at a university hospital with a large catchment area but at local, accessible meeting places closer to where the participants lived. Another option could be to arrange individual qualitative interviews to complement the findings of the present study with the perspectives of those with very advanced PD, that is, including people confined to home.

CONCLUSIONS This study adds to the body of knowledge on how to promote perceived participation in people with PD.


Although the findings have similarities to other studies that targeted participation in neurological diseases [47–51], our findings imply several potential means to facilitate participation for people with PD. This involves aspects such as having access to PD specific expertise, increasing the knowledge and thereby the understanding of PD, providing support for maintaining working life and promoting meaningful activities. The complexity of the interaction between the person, environment and activities is challenging, with PD specific traits that threaten participation. Therefore, health care and social services should be tailored to the needs of people with PD, to ensure person-centred interventions that promote participation.

[7]

[8]

[9]

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ACKNOWLEDGMENTS

[11]

The authors wish to thank Jan Reimer for valuable support in the sampling of participants and Jessica Lindell for her help with the transcription. The authors also wish to thank Professor Synneve Dahlin Ivanoff for valuable support regarding the focus group methodology. This study was funded by the Strategic Research Area MultiPark at Lund University, the NorrbackaEugenia Foundation, and the Ribbingska Foundation in Lund, Sweden. The study was accomplished within the context of the Centre for Ageing and Supportive Environments (CASE), Lund University, Sweden, funded by the Swedish Council for Working Life, Public Health and Welfare (Forte).

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CONFLICTS OF INTEREST

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