Disability and Rehabilitation
ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20
The rehabilitation plan can support clients’ active engagement and facilitate the process of change – experiences from people with late effects of polio participating in a rehabilitation programme Eva Månsson Lexell, Jan Lexell & Maria Larsson-Lund To cite this article: Eva Månsson Lexell, Jan Lexell & Maria Larsson-Lund (2015): The rehabilitation plan can support clients’ active engagement and facilitate the process of change – experiences from people with late effects of polio participating in a rehabilitation programme, Disability and Rehabilitation To link to this article: http://dx.doi.org/10.3109/09638288.2015.1038363
Published online: 20 Apr 2015.
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Date: 11 November 2015, At: 19:43
http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–8 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2015.1038363
RESEARCH PAPER
The rehabilitation plan can support clients’ active engagement and facilitate the process of change – experiences from people with late effects of polio participating in a rehabilitation programme Eva Ma˚nsson Lexell1,2, Jan Lexell1,2, and Maria Larsson-Lund3
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1
Department of Neurology and Rehabilitation Medicine, Ska˚ne University Hospital, Lund-Malmo¨, Sweden, 2Department of Health Sciences, Lund University, Lund, Sweden, and 3Department of Health Sciences, Division of Occupational Therapy, Lulea˚ University of Technology, Lulea˚, Sweden Abstract
Keywords
Purpose: To explore how the rehabilitation plan influences the rehabilitation process and its outcome in people with late effects of polio participating in an individualised goal-oriented interdisciplinary rehabilitation programme. Methods: Four women and two men with late effects of polio were interviewed before rehabilitation, at discharge, and at follow-up. Data were analysed according to the constant comparative method of grounded theory. Findings: The participants’ experiences formed one core category: ‘‘The same starting point but different rehabilitation processes’’. Before rehabilitation, all participants experienced a similar starting point: Naı¨ve understanding of rehabilitation. During rehabilitation, two separate processes followed. Four participants experienced their rehabilitation as being a mutually shared process that led to a process of change. They were actively engaged, using the rehabilitation plan, and working towards goals targeting a broad perspective of daily activities. The remaining two participants experienced their rehabilitation as a staff-directed process, with limited use of the rehabilitation plan, focusing on goals mainly related to body functions and self-care, not leading to any substantial changes. Conclusion: When clients experience that they develop a mutually shared rehabilitation process, based on a rehabilitation plan, they became more engaged in their rehabilitation and gained a better understanding of their participation during the process. Knowledge of the differences in how clients use the rehabilitation plan during the rehabilitation process can support their active engagement during rehabilitation. This, in turn, can promote a more holistic view among clients and professionals during the rehabilitation for people with late effects of polio.
Adaptation, international classification of functioning, disability and health, patient care planning, post-poliomyelitis syndrome, rehabilitation History Received 26 February 2015 Accepted 2 April 2015 Published online 20 April 2015
ä Implications for Rehabilitation
Clients who experience a rehabilitation that is mutually shared with professionals, have a better understanding of their engagement during the rehabilitation process. When clients and professionals use the rehabilitation plan as a mutual tool, clients become more actively engaged in their rehabilitation process. A structured rehabilitation plan can serve as a map, and support clients’ process of change during the rehabilitation process, also after the rehabilitation period is completed.
Introduction A central part of the rehabilitation process for people with disabilities is the planning and setting of goals [1–7]. Despite its importance for the overall outcome of rehabilitation, few studies have explored factors related to the planning and goal-setting process [8,9]. Planning and goal-setting in itself can improve clients’ autonomy, motivation and treatment adherence, and
Address for correspondence: Eva Ma˚nsson Lexell, Department of Health Sciences, Lund University, 22100 Lund, Sweden. Tel: +46 46 222 8995. E-mail: [email protected]
enhance teamwork by improved collaboration and communication [3,8]. This process can also have secondary therapeutic effects that go beyond the goal itself, for example improved client awareness of, and adaptation to a disability [8]. Wressle et al. [6] found that improved client participation in the goal-setting process significantly influenced their perception of the ability to manage daily tasks compared to controls. This indicates that the planning and setting of goals is a powerful tool in rehabilitation that can be important for the quality of the process and its outcome. However, planning and setting goals are challenging [10,11] and despite its central role in the rehabilitation process, there is limited or inconsistent evidence of its effectiveness [7,9].
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A successful rehabilitation outcome requires that the client is actively engaged throughout the entire process, which favors the use of a client-centred person-driven rehabilitation plan [4–6,12,13]. Yet, our knowledge how the planning and setting of goals can influence rehabilitation outcomes, both in terms of primary and secondary effects, is limited [8,9]. In addition, current literature provides limited suggestions how planning and setting of goals should be applied in rehabilitation [2,11]. Thus, increased knowledge about the active ingredients in this process is needed. By identifying these active ingredients and how they influence different aspects of the planning and setting of goals, the use of the rehabilitation plan as tool in the rehabilitation process of people with disabilities could be enhanced. Late effects of polio are a slowly progressive neurological condition that occurs in approximately 60% of people who previously acquired poliomyelitis [14]. In the European Union, it is estimated that there are about 600 000 survivors of polio and in Sweden, with 9 million people, the number is approximated to 15 000 polio survivors [15]. Many people often recovered entirely after their acute poliomyelitis infection, but after several decades of stability they may experience new symptoms, such as muscular weakness and fatigue, general fatigue, and musculoskeletal pain at rest or during activities. This can lead to difficulties in relation to their performance of daily activities [16], which in turn may impact their perceived participation [17], and with life satisfaction [18]. In a previous qualitative study [19], people with late effects of polio experienced their participation in an individualised goaloriented interdisciplinary rehabilitation programme as a turning point in life. They stated that a crucial part in the programme, which had influenced their process of change, was their active engagement in writing and implementing their own rehabilitation plan. Even if the rehabilitation plan was applied to all participants’ in the same way, it was evident that it had different impact on their rehabilitation processes, empowered them to various degrees of actions and changes, and also led to different outcomes. Thus, further studies are needed to understand the importance of the rehabilitation plan in the rehabilitation of people with late effects of polio. The aim of this qualitative study was to explore, from the participants’ perspective, how the rehabilitation plan influences the rehabilitation process and its outcome in people with late effects of polio that take part in an individualised goal-oriented interdisciplinary rehabilitation programme.
Methods Study design and participants Guided by a purposive sampling procedure [20], potential participants referred to a rehabilitation clinic at a university hospital in southern Sweden were identified by the treating physician (J. L.) during the initial outpatient assessment. The following inclusion criteria were used: (i) a confirmed history of prior poliomyelitis with new symptoms after a stable period of at least 20 years, and clinically and electromyographically (EMG) confirmed late effects of polio; (ii) not previously having taken part in an interdisciplinary rehabilitation programme; and (iii) being able to speak and understand Swedish. Over a period of 6 months, four women and two men were enrolled. The participants’ age ranged from 59 to 75 years (mean 66 years). The mean age at their poliomyelitis infection was 4 years. All participants were affected by late effects of polio in their lower limbs, and two also in their upper limbs. All but one were married or cohabited, two participants worked full time or part time, one had disability pension and three had old-age pension.
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Ethics Written and verbal information was given to all participants before the start of the study and all gave their informed consent to participate. The principles of the Helsinki Declaration were followed throughout the study. The rehabilitation programme On admission to rehabilitation, each participant was assessed by a team to identify their rehabilitation needs. The team has more than 10 years of experience of interdisciplinary rehabilitation for people with late effects of polio, and comprised a rehabilitation medicine physician, a physiotherapist, an occupational therapist and a social worker. The programme was goal-oriented and interdisciplinary, and all interventions were individually tailored. The programme was provided in an interactive manner through a dynamic collaboration between the participant and the professionals, facilitating the participant’s own engagement and learning. Professionals’ act was based on the desire of each participant’s thinking and acting. The programme was therefore individualised according to each participant’s goals, and, consequently, varied in length. The programme followed a rehabilitation plan that is based on the International Classification of Functioning Disability and Health (ICF) [21]. The plan included three parts: (i) the assessments; (ii) the goals and interventions; and (iii) a plan for the follow-up when the rehabilitation programme was completed. During the first days after admission, each participant was introduced to the plan, the ICF and how the plan was going to be used during their rehabilitation. They were also encouraged to start to write down their impairments, activity limitations and participation restrictions. This was then used when the professionals continued with their assessments, and, subsequently, when the participants’ goals were set and the interventions were planned. Even if all interventions were individually tailored, the educational part of the programme was the same for each participant. This part comprised lectures about late effects of polio, rehabilitation methodology, various interventions and selfmanagement strategies. The purpose was to teach them life-long self-management strategies, such as fatigue management, pacing of daily activities, and how to manage different impairments. Learning to use the rehabilitation plan, during the programme as well as after, was a central component of the educational programme. The individually tailored part of the programme included interventions where the participant was able to try different technical devices, learn different compensatory techniques and other medical and non-medical interventions, according to his or her needs. At discharge, a plan was made for those interventions that were carried out after completion of the programme together with the life-long clinical follow-up. Data collection All participants were interviewed three times by the first author (E. M. L.). The first interview was performed directly after the initial outpatient assessment; at that time point it was decided that the person was going to enter the rehabilitation programme approximately 2–4 weeks later. The second interview was performed when the person had completed the rehabilitation programme, on average 6 weeks after the first interview. The third interview was performed at follow-up, on average 12 weeks after the second interview. The first interviews were conducted in the participants’ home and the second interviews took place at the clinic on the day of their discharge. At follow-up, five participants were interviewed at the clinic and one in the participant’s home.
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DOI: 10.3109/09638288.2015.1038363
The interviews each lasted between 14 and 48 min (mean length 26 min), and all interviews were tape-recorded and transcribed verbatim. All interviews followed an interview guide with semistructured questions, but also allowed the participants to tell their stories in their own words. The first interviews included questions how the participants experienced their lives and problems in relation to their late effects of polio, and how they handled these problems during their everyday lives. They were also asked to describe their expectations in relation to the upcoming rehabilitation programme: what they thought it would contain, which goals they should focus on, and what their role would be during the programme. The second interview focused on their experiences in relation to the completed rehabilitation programme: who was present when the rehabilitation plan was written, how the goals were decided upon, and how they experienced their participation in this process. Questions were also asked if they had learnt anything when the rehabilitation plan was written and how they experienced the documentation of the plan. They were also asked if there was anything during the programme that was new to them. At the third interview, questions were similar to those during the second interview, but included a wider perspective, i.e. questions also concerned how the rehabilitation period had influenced their lives in a longer perspective and how they perceived their lives in the future. Information from the participants’ rehabilitation plans were also recorded as part of the data collection. Data analysis Data were analysed according to the constant comparative method of grounded theory, described by Strauss & Corbin [22]. This method was chosen since it is suitable for unravelling actions and processes in the participants’ experiences, consistent with the aim of the study. First, all interviews were carefully read in order to get an overall understanding of its content. Then, in the line-byline analysis, clusters in the text that reflected similar experiences in relation to the aim of the study were given a code. Codes were then compared and clustered until a preliminary set of codes existed. These were then grouped and clustered into preliminary categories. In parallel to this analysis, the goals from each participant were read and grouped into similar concepts, such as body functions, self-care, household activities, need for knowledge, etc. During this process, two different characteristics of the participants’ goals emerged. The axial coding procedure then followed where different codes within the different preliminary categories were compared. During this phase the category ‘‘a naı¨ve understanding of rehabilitation’’ emerged, that reflected the participants’ experiences before the programme. This category was connected to two categories that revealed the two different processes that evolved during the programme. These categories included components that could be related either to conditions that influenced the rehabilitation processes or the therapeutic effects that followed. To ensure that the codes and categories reflected the experiences shared by the participants, the emerging categories were constantly compared with the original text from the interviews. The analysis continued until all properties within each subcategory were defined. Finally, all data – codes, properties, subcategories and categories – were considered when the core category was formed to ensure that it reflected all findings. The first and last author performed every step in the analysis together in an iterative process.
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The same starting point but different rehabilitation processes
Being engaged in a mutually shared rehabilitation process that led to a process of change Naïve understanding of rehabilitation Being involved in a staff directed rehabilitation process where not much has changed Before rehabilitation
During rehabilitation
Figure 1. The findings show how the participants’ experiences evolved from a similar experience before the rehabilitation to different experiences during their rehabilitation process.
initial outpatient assessment to follow-up, formed one core category: ‘‘The same starting point but different rehabilitation processes’’. Initially, before the rehabilitation had started, all participants experienced a similar starting point of the process: ‘‘Naı¨ve understanding of rehabilitation’’. When the rehabilitation was initiated, the participants’ experiences developed in two separate processes: (i) ‘‘Being engaged in a mutually shared rehabilitation process that led to a process of change’’, and (ii) ‘‘Being involved in a staff-directed rehabilitation process where not much has changed’’ (Figure 1). The two directions of their processes were identified based on the data from the second and the third interview, where certain participants shared the same experiences and acted in the same way throughout the rehabilitation process. That is, four participants reflected how they had actively used the rehabilitation plan and conceptualised their active engagement in their rehabilitation process as mutually shared with the professionals. Their rehabilitation plans targeted goals in relation to all types of activities, i.e. self-care, household activities, leisure and work. Two participants experienced their rehabilitation process as being staff-directed, and that they relied on the professionals and only vaguely recognised the rehabilitation plan. Their goals mainly focused on body functions and selfcare. In the text, the three different parts of the process is described, including quotations from the participants. The two different process categories, together with its underlying subcategories and properties, are described in Table 1. Naı¨ve understanding of rehabilitation This category includes two subcategories describing experiences in relation to expectations that all the participants narrated in the first phase, before the start of the rehabilitation programme. Having problems without managing to solve them All participants were overwhelmed with their current problems, without having any solutions to them. Yet, they experienced a need to talk about and discuss their problems. They shared different experiences with previous health care contacts, where a few participants described that they did not have any positive experiences whereas others were satisfied. Despite their experiences, they had all come to the conclusion that they could no longer manage on their own and had to accept that they needed help from professionals with knowledge about late effects of polio.
Findings
Expecting physical rehabilitation to stay independent
The participants’ experiences of how the rehabilitation plan influences the rehabilitation process and its outcome, from the
The participants described how they expected to get help from professionals, mostly related to alleviating different symptoms,
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Table 1. Overview of how the participants during the programme experienced their rehabilitation as a process they mutually shared with professionals or as a process that was staff-directed. Process categories Being engaged in a mutually shared rehabilitation process that led to a process of change
Subcategories
Properties
Understanding the rehabilitation process influenced their decision to take an active part in the process
Taking an active engagement in the rehabilitation process Understanding the problems, possible solutions and what needs to be done Having everything summarised in one document clarify one’s responsibility for implementing interventions The rehabilitation plan was a map for life that gave insight and supported the process of change Obtaining new knowledge supported the execution of the rehabilitation plan Obtaining new insight in one’s own resources in life and learning new skills Realizing that rehabilitation takes time and is dependent on other peoples’ involvement Creating a partnership in mutual agreement, and being part of the team The professionals communicate relevant aspects of daily life in plain language, easily understood Interventions are carried out in mutual agreement in a certain pace over time The team has the knowledge and takes all decisions The rehabilitation plan was made for the professionals and not for me Being uncertain of the importance of the rehabilitation Difficult to express oneself in the rehabilitation plan Experiencing rehabilitation as a temporary rest Choosing to prioritise other conditions close to me Experiencing no change in my home situation
Having an on-going document where everything is recorded and coordinated
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Reaching the goals by increased knowledge and experiences of how to solve the problems
Being at the centre of the rehabilitation team
Being involved in a staff-directed rehabilitation process where not much has changed
Deciding to rely on professional knowledge Vaguely recognizing the rehabilitation plan Having other things on one’s mind
receiving physical therapy training and orthotics. As one of the participants narrated: Well, I have great expectations [laughs] . . . I want them to take away my pain but I don’t know what they can do about that . . . maybe something to put in my shoe that can remove the pain . . . I think I will get some kind of exercise, but I don’t know what kind . . . Participant 2 Some of the participants had previously met with a physiotherapist or an occupational therapist, mostly related to assistive or mobility devices, and this was described as a positive experience. They also said that they would keep their minds open to different solutions, as long as it would maintain their independency. Being engaged in a mutually shared rehabilitation process that led to a process of change This category comprises four subcategories that cover experiences that started at the beginning of the rehabilitation process and evolved as the process proceeded. It was shared by the four participants who described their rehabilitation process as mutually shared, and where it had led to a continuous process of change.
Understanding the rehabilitation process influenced their decision to take an active part in the process When the participants were taught how to use the rehabilitation plan, they said it became evident that they could contribute to the writing of the plan and that their engagement was needed during the entire rehabilitation process. Even if they struggled or did not manage to formulate goals alone, they said they had made an effort to be engaged in the process. Still, some also added that even if they had taken an active role in the process during the programme, at follow-up they were still struggling to stay active, working to achieve their long-term goals. The participants described that learning how to use the rehabilitation plan was difficult in the beginning, and they struggled to understand how to use it. Yet, by having to take responsibility and write down their goals and problems in the plan, their problems had become more visible to them, as well as how the problems were linked to the goals and interventions. In turn, they said this had helped them to understand that there were solutions to their problems and and what they, themselves had to do to live a better everyday life. As one participant described: It [the rehabilitation plan] had a large impact, because I realized that I needed help, and that I could get help. First I had to write my problems, which I had never done before, and
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when I wrote the goals I realized this [writing it in the plan] helped me . . . I have kept my problems to myself before and hid it back here [points to the head], but when I wrote them [problems and goals] I understood the magnitude of my problems. Now I also know that I can get help, and that’s why I’m satisfied. Participant 3
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Having an on-going document where everything is recorded and coordinated The participants expressed how they appreciated that everything was summarised in the rehabilitation plan and that the plan was used during the programme, even if a few participants said they, initially, did not think that the plan was made specifically for them. Since everything was documented in the plan, and shared with the professionals, the participants said it made them feel confident that problems were taken seriously, and that interventions would be carried out. Because the rehabilitation plan was something they themselves were involved in, the participants also stressed that it put pressure on them to take responsibility to attend to their problems and make sure that all planned interventions were realised. As shared by one of the participants: It is very important for me to have everything written in this way. It is a guarantee that the goals really will be attended to . . . and because it is written on paper, I really have to do something about them. Participant 1 They also described how the plan was a tool that they used both during and after admission, as a guide to live a more satisfying life and avoid deterioration. By constantly coming back to using the rehabilitation plan, they gained insight to how they could manage their everyday life. Some participants also emphasised that the plan had guided them during their process, and by keeping to its content, it had supported them in their process of change. Reaching the goals by increased knowledge and experiences of how to solve the problems The participants expressed that the knowledge they gained during the programme had helped them to carry out their interventions in the plan. This process started already when the results from the assessments were discussed and incorporated into the rehabilitation plan. Because the professionals clearly communicated not only disabilities but also abilities as well as possibilities, this had taught the participants to link their disability with their daily life, for example, by setting goals relevant for their daily life. They emphasised the importance of being confirmed in understanding that they had a real disability that affected their everyday life, which could not be explained by laziness or an undefined illness. This awareness, together with the fact that they themselves could impact on how the plan was effectuated had changed their view of themselves and their identity, and made them more secure of their abilities and possibilities in life. They had also gained insight into their own resources in life and learned how to do things differently, and they had come to understand that the results from the rehabilitation programme were dependent not only physical training but many other interventions. For example, they had learnt how to limit the number of daily activities that they were engaged in and the importance of taking daily pauses. As one person shared: I thought it [the rehabilitation] would include more physical training but there are a lot of other things included.
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[Previously], I haven’t thought so much about how I do my activities ehh, to distribute lighter and heavier tasks during the day and the week, to take pauses and so on . . . They analyzed my doing when I cooked and baked . . . it was interesting. To learn that I’m not standing straight when I think I am . . . it is less training and more of learning about your body and to have balance [in life] Participant 5 Another example they expressed was how insight into their own resources, and how these could be used, had facilitated carrying out the plan, particularly after discharge when they had to incorporate the interventions in their daily lives. They emphasised the need to understand that rehabilitation and adapting to the changes in life was a process that takes time and lasts well beyond the time at the clinic. Another aspect that they expressed was how they had realised that the outcome of the programme was dependent on many people, not only the professionals, but also family members, employers and other health care professionals. Yet, they said they now felt confident, since the plan also involved contacts outside of the clinic. Being at the centre of the rehabilitation team The participants expressed that attitudes and understanding from the professionals were very important and had led to a positive approach. They said that the professionals believed them and listened to their needs, and when they trusted the professionals it was easier to be open and talk about problems that needed to be attended to. This made them experience the rehabilitation as a process performed in agreement between them and the professionals, where they were part of the rehabilitation team and the plan served as their mutual tool. The participants emphasised that one crucial aspect for a mutual agreement during the rehabilitation was the fact that the professionals did not use medical terms and concepts just known to them. Instead they used plain language and focused on aspects in everyday life, relevant for each participant. Thereby, the participants felt confident and could rely on the professionals’ knowledge. As shared by one of the participants: . . . they are ordinary people and easy to talk to . . . it makes it easier for me to talk about problems and things I need help with. They don’t use healthcare terminology and such but they use plain language which makes it easier . . . then I can open up and feel confident. Participant 3 Another aspect that the participants described was how they felt that their abilities were central during the rehabilitation process. Because they had taken part in formulating the rehabilitation plan, the goals in the plan were relevant for them. The goals also influenced the pace of the rehabilitation process and the implementation of different interventions was decided by them and not the professionals. If the participants were too tired or too emotional, professionals waited until the participants were ready for the next step.
Being involved in a staff-directed rehabilitation process, where not much has changed This subcategory emerged from two participants’ experiences of a staff-directed rehabilitation process, where not much in their lives changed, during or after the rehabilitation programme.
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Deciding to rely on professional knowledge The participants said the team had all the knowledge and because they did not have any themselves, they had to rely on the professionals’ decisions. As narrated by one participant: . . . it is nice that they [the professionals] know what they are doing because I don’t have a clue about this [rehabilitation issues]. Participant 6
Vaguely recognizing the rehabilitation plan
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The participants expressed that they were not sure if the plan was important or not, and thought it was mainly for the professionals and not for them. They said they did not experience that the plan had any influence on the interventions they were offered during the programme, and they did not remember which interventions that were written in the plan. One person had a vague picture of what was included in the plan during the programme. The other person shared this quotation: . . . I don’t really know which paper you are referring to . . . [ sighs] . . . the only thing I wrote down was my wish for my leg [to be restored] . . . Participant 4 They also emphasised that they did not have the competence to use a rehabilitation plan. They experienced that they had not received instructions of how to use the plan, and had a too tight schedule when they were writing the plan, and therefore found it difficult to use it. Having other things on one’s mind The participants told that they prioritised other things in parallel to the rehabilitation programme and their rehabilitation plan. One participant said that after the programme, all time was spent caring for the spouse, and the other participant shared that instead of thinking about the plan, time was spent on thinking how to manage work in order to provide the spouse (also working in the family business) with an old-age pension. The participants reflected upon the programme as a period of temporary rest and respite, where they had had the opportunity to leave their worries and their house chores behind for some time. They also said they had not thought much of their rehabilitation after discharge, and nothing had really changed in their homes and lives after rehabilitation. As described by this quotation: I haven’t thought so much of my rehabilitation since I got home . . . I felt better when I came home because then I had ehh I call it [the rehabilitation] rest, the week I had when I was there [at the rehabilitation centre], and it lasted a while but then . . . everything went back to how it used to be . . . I did appreciate the content as well as the rest during the programme . . . Participant 4
Discussion The main findings of this study were that before the start of rehabilitation, the participants had similar naı¨ve experiences and expectations. Then, two separate types of processes with different outcomes developed, where participants experienced their rehabilitation as being a mutually shared process or as a staffdirected process. The fact that some participants were more involved in their rehabilitation than others is recognised from clinical practice.
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It is known from previous studies that clients who actively engage in their goal-setting and rehabilitation process experience more improvements in managing everyday activities [4–6,12,13]. Yet, there is a lack of knowledge of how an active involvement can increase in clients who do not feel involved in their rehabilitation. Thus, the findings from the present study can add to the knowledge base needed to improve active engagement also in clients who experience their rehabilitation as staff-directed. Possibly, the rehabilitation need to be planned and implemented differently for these clients compared to those who experience their rehabilitation as mutually shared with the professionals. Participants who experienced that they were involved in a staff-directed process described rehabilitation as something the professionals had knowledge about and were responsible for. Apparently, they handed over the responsibility for their rehabilitation to the professionals and took on a more passive role, vaguely recognizing the content of their plan. One reason could be that other things in life took priority during and after rehabilitation, and they were therefore not ready for major alterations in life. Alternatively, they interpreted their health condition in agreement with a medical decision-making model [23], where clients reside in the hand of the experts. Interestingly, goals set by these participants focused mainly on self-reported body functions, self-care and mobility, whereas those who experienced themselves as being engaged in a mutually shared rehabilitation process identified a wider range of goals related to activities at home, work and leisure. All participants received education about the need to adopt life-long self-management strategies to reduce the progress of their disability. It is therefore difficult to understand why the participants identified goals that were so different. This could be a consequence of their limited engagement in their own process. The width and content of the goals can be an important ingredient that may facilitate rehabilitation outcomes beyond the scope of the specific goals, so-called secondary rehabilitation effects. Thus, these findings indicate the importance of supporting clients to set goals related to activity and participation, in agreement with the ICF [21]. Yet, the present study relies on data from a limited number of participants and focuses primarily on experiences in relation to the use of a rehabilitation plan, and not specifically on which goals that were set. Future studies should therefore explore whether the type of goals influence clients’ active engagement during the process as well as the outcome of rehabilitation. In addition, further research is needed to identify how professionals can support the establishment of goals that promote an active engagement, in particular when clients have difficulties relating rehabilitation to their possibilities to engage in activities in daily life. The experiences of the participants engaged in a mutually shared rehabilitation process reflect a number of active ingredients that influenced each other and generated synergistic effects. The participants’ relation to and interaction with the professionals throughout the process was experienced as an important ingredient for their outcome, in agreement with previous research [5,10,11,19]. Furthermore, previous research [24–26] has shown that the relationship and collaboration between the client and professionals is complex and influence planning, the realisation of a plan and outcome. Playford et al. [11] have also suggested that the goal-setting has a major influence on the relationship between the client and the professionals. In agreement with our previous study [19], the mutually shared dialogue about the rehabilitation plan, described by four of the participants, was an important ingredient that facilitated their active engagement and responsibility in the rehabilitation
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DOI: 10.3109/09638288.2015.1038363
process. The plan was as a tool that enabled them to understand the importance of taking an active role in the process and to empower them to various actions and changes. The role of the plan varied throughout the process. Initially, it supported the participants in identifying and acknowledging their problems, and in communicating and making professionals understand their problems in daily life. Later, the plan motivated them to continue their process of change. These findings suggest that the way the plan was used in the programme was in several ways beneficial for the participants. The experiences of those being engaged in a mutually shared process reflect that the process ended with a behavioural change, a fundamental aim in a goalsetting process to achieve sustainable changes through rehabilitation [4]. The present study therefore adds knowledge that can guide professionals in applying rehabilitation plans and goalsetting, facilitating active ingredients that are important for the long-term outcome of rehabilitation. Since this study used a qualitative methodology, the findings cannot be generalised to all people with late effects of polio. It can, however, provide a deeper understanding and create opportunities for transferability of the findings not only to this group of people but to those with other life-long neurological disabilities. Therefore, there is a need for further studies targeting people with other neurological disabilities, as clients may handle their rehabilitation process in different ways. A purposive sampling procedure was used, resulting in participants with a diverse background. As the participants had to speak and understand Swedish, no participant with another ethnic background was included. This is a limitation since an increasing number of people with late effects of polio from other parts of the world are now residing in Sweden. By including those participants this could have broadened the experiences shared by the interviews. Six participants were interviewed, which can be considered few, but because all of them were interviewed three times during their rehabilitation, the data collection was extensive. This strengthened the credibility of the study, since the participants were given several opportunities to share their experiences. The interviews also followed an interview guide with semi-structured questions, where some of the questions overlapped, and this gave the participants the possibility to provide many-faceted stories. Another strength was that the interviewer was not involved in the participants’ rehabilitation and did not share information from the interviews with any of the team members. Thereby, the participants could confidently share their experiences. Similarly, the analysis was performed by the first and last authors, together, but not by the second author as he was part of the rehabilitation team. The first author was responsible for the main analysis and the emerging findings were then scrutinised by the last author, which further strengthened the credibility of the analysis. In conclusion, when clients experience that they develop a mutually shared rehabilitation plan with professionals, they become more engaged in, and gain a better understanding of their own participation during the rehabilitation process. Knowledge of the differences how clients understand and manage their rehabilitation plan during the rehabilitation process, as well as how they can relate it to their daily life can support clients’ active engagement in their rehabilitation. It can also facilitate both clients and staff towards a more holistic view of rehabilitation for people with late effects of polio.
Acknowledgements The authors thank the participants who willingly shared their experiences. This work was accomplished within the context of
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the Department of Neurology and Rehabilitation Medicine, Ska˚ne University Hospital, Lund-Malmo¨, Sweden, Lulea˚ University of Technology, Lulea˚, Sweden, and within the context of the Centre for Ageing and Supportive Environments (CASE), Lund University, Sweden, funded by the Swedish Research Council for Health, Working Life and Welfare.
Declaration of interest This work was funded by Ska˚ne University Hospital, Sweden and Norrbacka-Eugenia Foundation, Sweden. The authors report no other declaration of interest.
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21. World Health Organisation. International Classification of Functioning, Disability and Health-ICF. Geneva: WHO; 2001. 22. Strauss A, Corbin J. Basics of qualitative research: techniques and procedures for developing grounded theory. 2nd ed. Thousand Oaks (CA): Sage; 1998. 23. Deber RB. Physicians in health care management: 7. The patientphysician partnership: changing roles and the desire for information. CMAJ 1994;151:171–6.
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ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20
The rehabilitation plan can support clients’ active engagement and facilitate the process of change – experiences from people with late effects of polio participating in a rehabilitation programme Eva Månsson Lexell, Jan Lexell & Maria Larsson-Lund To cite this article: Eva Månsson Lexell, Jan Lexell & Maria Larsson-Lund (2015): The rehabilitation plan can support clients’ active engagement and facilitate the process of change – experiences from people with late effects of polio participating in a rehabilitation programme, Disability and Rehabilitation To link to this article: http://dx.doi.org/10.3109/09638288.2015.1038363
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http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–8 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2015.1038363
RESEARCH PAPER
The rehabilitation plan can support clients’ active engagement and facilitate the process of change – experiences from people with late effects of polio participating in a rehabilitation programme Eva Ma˚nsson Lexell1,2, Jan Lexell1,2, and Maria Larsson-Lund3
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1
Department of Neurology and Rehabilitation Medicine, Ska˚ne University Hospital, Lund-Malmo¨, Sweden, 2Department of Health Sciences, Lund University, Lund, Sweden, and 3Department of Health Sciences, Division of Occupational Therapy, Lulea˚ University of Technology, Lulea˚, Sweden Abstract
Keywords
Purpose: To explore how the rehabilitation plan influences the rehabilitation process and its outcome in people with late effects of polio participating in an individualised goal-oriented interdisciplinary rehabilitation programme. Methods: Four women and two men with late effects of polio were interviewed before rehabilitation, at discharge, and at follow-up. Data were analysed according to the constant comparative method of grounded theory. Findings: The participants’ experiences formed one core category: ‘‘The same starting point but different rehabilitation processes’’. Before rehabilitation, all participants experienced a similar starting point: Naı¨ve understanding of rehabilitation. During rehabilitation, two separate processes followed. Four participants experienced their rehabilitation as being a mutually shared process that led to a process of change. They were actively engaged, using the rehabilitation plan, and working towards goals targeting a broad perspective of daily activities. The remaining two participants experienced their rehabilitation as a staff-directed process, with limited use of the rehabilitation plan, focusing on goals mainly related to body functions and self-care, not leading to any substantial changes. Conclusion: When clients experience that they develop a mutually shared rehabilitation process, based on a rehabilitation plan, they became more engaged in their rehabilitation and gained a better understanding of their participation during the process. Knowledge of the differences in how clients use the rehabilitation plan during the rehabilitation process can support their active engagement during rehabilitation. This, in turn, can promote a more holistic view among clients and professionals during the rehabilitation for people with late effects of polio.
Adaptation, international classification of functioning, disability and health, patient care planning, post-poliomyelitis syndrome, rehabilitation History Received 26 February 2015 Accepted 2 April 2015 Published online 20 April 2015
ä Implications for Rehabilitation
Clients who experience a rehabilitation that is mutually shared with professionals, have a better understanding of their engagement during the rehabilitation process. When clients and professionals use the rehabilitation plan as a mutual tool, clients become more actively engaged in their rehabilitation process. A structured rehabilitation plan can serve as a map, and support clients’ process of change during the rehabilitation process, also after the rehabilitation period is completed.
Introduction A central part of the rehabilitation process for people with disabilities is the planning and setting of goals [1–7]. Despite its importance for the overall outcome of rehabilitation, few studies have explored factors related to the planning and goal-setting process [8,9]. Planning and goal-setting in itself can improve clients’ autonomy, motivation and treatment adherence, and
Address for correspondence: Eva Ma˚nsson Lexell, Department of Health Sciences, Lund University, 22100 Lund, Sweden. Tel: +46 46 222 8995. E-mail: [email protected]
enhance teamwork by improved collaboration and communication [3,8]. This process can also have secondary therapeutic effects that go beyond the goal itself, for example improved client awareness of, and adaptation to a disability [8]. Wressle et al. [6] found that improved client participation in the goal-setting process significantly influenced their perception of the ability to manage daily tasks compared to controls. This indicates that the planning and setting of goals is a powerful tool in rehabilitation that can be important for the quality of the process and its outcome. However, planning and setting goals are challenging [10,11] and despite its central role in the rehabilitation process, there is limited or inconsistent evidence of its effectiveness [7,9].
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A successful rehabilitation outcome requires that the client is actively engaged throughout the entire process, which favors the use of a client-centred person-driven rehabilitation plan [4–6,12,13]. Yet, our knowledge how the planning and setting of goals can influence rehabilitation outcomes, both in terms of primary and secondary effects, is limited [8,9]. In addition, current literature provides limited suggestions how planning and setting of goals should be applied in rehabilitation [2,11]. Thus, increased knowledge about the active ingredients in this process is needed. By identifying these active ingredients and how they influence different aspects of the planning and setting of goals, the use of the rehabilitation plan as tool in the rehabilitation process of people with disabilities could be enhanced. Late effects of polio are a slowly progressive neurological condition that occurs in approximately 60% of people who previously acquired poliomyelitis [14]. In the European Union, it is estimated that there are about 600 000 survivors of polio and in Sweden, with 9 million people, the number is approximated to 15 000 polio survivors [15]. Many people often recovered entirely after their acute poliomyelitis infection, but after several decades of stability they may experience new symptoms, such as muscular weakness and fatigue, general fatigue, and musculoskeletal pain at rest or during activities. This can lead to difficulties in relation to their performance of daily activities [16], which in turn may impact their perceived participation [17], and with life satisfaction [18]. In a previous qualitative study [19], people with late effects of polio experienced their participation in an individualised goaloriented interdisciplinary rehabilitation programme as a turning point in life. They stated that a crucial part in the programme, which had influenced their process of change, was their active engagement in writing and implementing their own rehabilitation plan. Even if the rehabilitation plan was applied to all participants’ in the same way, it was evident that it had different impact on their rehabilitation processes, empowered them to various degrees of actions and changes, and also led to different outcomes. Thus, further studies are needed to understand the importance of the rehabilitation plan in the rehabilitation of people with late effects of polio. The aim of this qualitative study was to explore, from the participants’ perspective, how the rehabilitation plan influences the rehabilitation process and its outcome in people with late effects of polio that take part in an individualised goal-oriented interdisciplinary rehabilitation programme.
Methods Study design and participants Guided by a purposive sampling procedure [20], potential participants referred to a rehabilitation clinic at a university hospital in southern Sweden were identified by the treating physician (J. L.) during the initial outpatient assessment. The following inclusion criteria were used: (i) a confirmed history of prior poliomyelitis with new symptoms after a stable period of at least 20 years, and clinically and electromyographically (EMG) confirmed late effects of polio; (ii) not previously having taken part in an interdisciplinary rehabilitation programme; and (iii) being able to speak and understand Swedish. Over a period of 6 months, four women and two men were enrolled. The participants’ age ranged from 59 to 75 years (mean 66 years). The mean age at their poliomyelitis infection was 4 years. All participants were affected by late effects of polio in their lower limbs, and two also in their upper limbs. All but one were married or cohabited, two participants worked full time or part time, one had disability pension and three had old-age pension.
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Ethics Written and verbal information was given to all participants before the start of the study and all gave their informed consent to participate. The principles of the Helsinki Declaration were followed throughout the study. The rehabilitation programme On admission to rehabilitation, each participant was assessed by a team to identify their rehabilitation needs. The team has more than 10 years of experience of interdisciplinary rehabilitation for people with late effects of polio, and comprised a rehabilitation medicine physician, a physiotherapist, an occupational therapist and a social worker. The programme was goal-oriented and interdisciplinary, and all interventions were individually tailored. The programme was provided in an interactive manner through a dynamic collaboration between the participant and the professionals, facilitating the participant’s own engagement and learning. Professionals’ act was based on the desire of each participant’s thinking and acting. The programme was therefore individualised according to each participant’s goals, and, consequently, varied in length. The programme followed a rehabilitation plan that is based on the International Classification of Functioning Disability and Health (ICF) [21]. The plan included three parts: (i) the assessments; (ii) the goals and interventions; and (iii) a plan for the follow-up when the rehabilitation programme was completed. During the first days after admission, each participant was introduced to the plan, the ICF and how the plan was going to be used during their rehabilitation. They were also encouraged to start to write down their impairments, activity limitations and participation restrictions. This was then used when the professionals continued with their assessments, and, subsequently, when the participants’ goals were set and the interventions were planned. Even if all interventions were individually tailored, the educational part of the programme was the same for each participant. This part comprised lectures about late effects of polio, rehabilitation methodology, various interventions and selfmanagement strategies. The purpose was to teach them life-long self-management strategies, such as fatigue management, pacing of daily activities, and how to manage different impairments. Learning to use the rehabilitation plan, during the programme as well as after, was a central component of the educational programme. The individually tailored part of the programme included interventions where the participant was able to try different technical devices, learn different compensatory techniques and other medical and non-medical interventions, according to his or her needs. At discharge, a plan was made for those interventions that were carried out after completion of the programme together with the life-long clinical follow-up. Data collection All participants were interviewed three times by the first author (E. M. L.). The first interview was performed directly after the initial outpatient assessment; at that time point it was decided that the person was going to enter the rehabilitation programme approximately 2–4 weeks later. The second interview was performed when the person had completed the rehabilitation programme, on average 6 weeks after the first interview. The third interview was performed at follow-up, on average 12 weeks after the second interview. The first interviews were conducted in the participants’ home and the second interviews took place at the clinic on the day of their discharge. At follow-up, five participants were interviewed at the clinic and one in the participant’s home.
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DOI: 10.3109/09638288.2015.1038363
The interviews each lasted between 14 and 48 min (mean length 26 min), and all interviews were tape-recorded and transcribed verbatim. All interviews followed an interview guide with semistructured questions, but also allowed the participants to tell their stories in their own words. The first interviews included questions how the participants experienced their lives and problems in relation to their late effects of polio, and how they handled these problems during their everyday lives. They were also asked to describe their expectations in relation to the upcoming rehabilitation programme: what they thought it would contain, which goals they should focus on, and what their role would be during the programme. The second interview focused on their experiences in relation to the completed rehabilitation programme: who was present when the rehabilitation plan was written, how the goals were decided upon, and how they experienced their participation in this process. Questions were also asked if they had learnt anything when the rehabilitation plan was written and how they experienced the documentation of the plan. They were also asked if there was anything during the programme that was new to them. At the third interview, questions were similar to those during the second interview, but included a wider perspective, i.e. questions also concerned how the rehabilitation period had influenced their lives in a longer perspective and how they perceived their lives in the future. Information from the participants’ rehabilitation plans were also recorded as part of the data collection. Data analysis Data were analysed according to the constant comparative method of grounded theory, described by Strauss & Corbin [22]. This method was chosen since it is suitable for unravelling actions and processes in the participants’ experiences, consistent with the aim of the study. First, all interviews were carefully read in order to get an overall understanding of its content. Then, in the line-byline analysis, clusters in the text that reflected similar experiences in relation to the aim of the study were given a code. Codes were then compared and clustered until a preliminary set of codes existed. These were then grouped and clustered into preliminary categories. In parallel to this analysis, the goals from each participant were read and grouped into similar concepts, such as body functions, self-care, household activities, need for knowledge, etc. During this process, two different characteristics of the participants’ goals emerged. The axial coding procedure then followed where different codes within the different preliminary categories were compared. During this phase the category ‘‘a naı¨ve understanding of rehabilitation’’ emerged, that reflected the participants’ experiences before the programme. This category was connected to two categories that revealed the two different processes that evolved during the programme. These categories included components that could be related either to conditions that influenced the rehabilitation processes or the therapeutic effects that followed. To ensure that the codes and categories reflected the experiences shared by the participants, the emerging categories were constantly compared with the original text from the interviews. The analysis continued until all properties within each subcategory were defined. Finally, all data – codes, properties, subcategories and categories – were considered when the core category was formed to ensure that it reflected all findings. The first and last author performed every step in the analysis together in an iterative process.
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The same starting point but different rehabilitation processes
Being engaged in a mutually shared rehabilitation process that led to a process of change Naïve understanding of rehabilitation Being involved in a staff directed rehabilitation process where not much has changed Before rehabilitation
During rehabilitation
Figure 1. The findings show how the participants’ experiences evolved from a similar experience before the rehabilitation to different experiences during their rehabilitation process.
initial outpatient assessment to follow-up, formed one core category: ‘‘The same starting point but different rehabilitation processes’’. Initially, before the rehabilitation had started, all participants experienced a similar starting point of the process: ‘‘Naı¨ve understanding of rehabilitation’’. When the rehabilitation was initiated, the participants’ experiences developed in two separate processes: (i) ‘‘Being engaged in a mutually shared rehabilitation process that led to a process of change’’, and (ii) ‘‘Being involved in a staff-directed rehabilitation process where not much has changed’’ (Figure 1). The two directions of their processes were identified based on the data from the second and the third interview, where certain participants shared the same experiences and acted in the same way throughout the rehabilitation process. That is, four participants reflected how they had actively used the rehabilitation plan and conceptualised their active engagement in their rehabilitation process as mutually shared with the professionals. Their rehabilitation plans targeted goals in relation to all types of activities, i.e. self-care, household activities, leisure and work. Two participants experienced their rehabilitation process as being staff-directed, and that they relied on the professionals and only vaguely recognised the rehabilitation plan. Their goals mainly focused on body functions and selfcare. In the text, the three different parts of the process is described, including quotations from the participants. The two different process categories, together with its underlying subcategories and properties, are described in Table 1. Naı¨ve understanding of rehabilitation This category includes two subcategories describing experiences in relation to expectations that all the participants narrated in the first phase, before the start of the rehabilitation programme. Having problems without managing to solve them All participants were overwhelmed with their current problems, without having any solutions to them. Yet, they experienced a need to talk about and discuss their problems. They shared different experiences with previous health care contacts, where a few participants described that they did not have any positive experiences whereas others were satisfied. Despite their experiences, they had all come to the conclusion that they could no longer manage on their own and had to accept that they needed help from professionals with knowledge about late effects of polio.
Findings
Expecting physical rehabilitation to stay independent
The participants’ experiences of how the rehabilitation plan influences the rehabilitation process and its outcome, from the
The participants described how they expected to get help from professionals, mostly related to alleviating different symptoms,
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Table 1. Overview of how the participants during the programme experienced their rehabilitation as a process they mutually shared with professionals or as a process that was staff-directed. Process categories Being engaged in a mutually shared rehabilitation process that led to a process of change
Subcategories
Properties
Understanding the rehabilitation process influenced their decision to take an active part in the process
Taking an active engagement in the rehabilitation process Understanding the problems, possible solutions and what needs to be done Having everything summarised in one document clarify one’s responsibility for implementing interventions The rehabilitation plan was a map for life that gave insight and supported the process of change Obtaining new knowledge supported the execution of the rehabilitation plan Obtaining new insight in one’s own resources in life and learning new skills Realizing that rehabilitation takes time and is dependent on other peoples’ involvement Creating a partnership in mutual agreement, and being part of the team The professionals communicate relevant aspects of daily life in plain language, easily understood Interventions are carried out in mutual agreement in a certain pace over time The team has the knowledge and takes all decisions The rehabilitation plan was made for the professionals and not for me Being uncertain of the importance of the rehabilitation Difficult to express oneself in the rehabilitation plan Experiencing rehabilitation as a temporary rest Choosing to prioritise other conditions close to me Experiencing no change in my home situation
Having an on-going document where everything is recorded and coordinated
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Reaching the goals by increased knowledge and experiences of how to solve the problems
Being at the centre of the rehabilitation team
Being involved in a staff-directed rehabilitation process where not much has changed
Deciding to rely on professional knowledge Vaguely recognizing the rehabilitation plan Having other things on one’s mind
receiving physical therapy training and orthotics. As one of the participants narrated: Well, I have great expectations [laughs] . . . I want them to take away my pain but I don’t know what they can do about that . . . maybe something to put in my shoe that can remove the pain . . . I think I will get some kind of exercise, but I don’t know what kind . . . Participant 2 Some of the participants had previously met with a physiotherapist or an occupational therapist, mostly related to assistive or mobility devices, and this was described as a positive experience. They also said that they would keep their minds open to different solutions, as long as it would maintain their independency. Being engaged in a mutually shared rehabilitation process that led to a process of change This category comprises four subcategories that cover experiences that started at the beginning of the rehabilitation process and evolved as the process proceeded. It was shared by the four participants who described their rehabilitation process as mutually shared, and where it had led to a continuous process of change.
Understanding the rehabilitation process influenced their decision to take an active part in the process When the participants were taught how to use the rehabilitation plan, they said it became evident that they could contribute to the writing of the plan and that their engagement was needed during the entire rehabilitation process. Even if they struggled or did not manage to formulate goals alone, they said they had made an effort to be engaged in the process. Still, some also added that even if they had taken an active role in the process during the programme, at follow-up they were still struggling to stay active, working to achieve their long-term goals. The participants described that learning how to use the rehabilitation plan was difficult in the beginning, and they struggled to understand how to use it. Yet, by having to take responsibility and write down their goals and problems in the plan, their problems had become more visible to them, as well as how the problems were linked to the goals and interventions. In turn, they said this had helped them to understand that there were solutions to their problems and and what they, themselves had to do to live a better everyday life. As one participant described: It [the rehabilitation plan] had a large impact, because I realized that I needed help, and that I could get help. First I had to write my problems, which I had never done before, and
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when I wrote the goals I realized this [writing it in the plan] helped me . . . I have kept my problems to myself before and hid it back here [points to the head], but when I wrote them [problems and goals] I understood the magnitude of my problems. Now I also know that I can get help, and that’s why I’m satisfied. Participant 3
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Having an on-going document where everything is recorded and coordinated The participants expressed how they appreciated that everything was summarised in the rehabilitation plan and that the plan was used during the programme, even if a few participants said they, initially, did not think that the plan was made specifically for them. Since everything was documented in the plan, and shared with the professionals, the participants said it made them feel confident that problems were taken seriously, and that interventions would be carried out. Because the rehabilitation plan was something they themselves were involved in, the participants also stressed that it put pressure on them to take responsibility to attend to their problems and make sure that all planned interventions were realised. As shared by one of the participants: It is very important for me to have everything written in this way. It is a guarantee that the goals really will be attended to . . . and because it is written on paper, I really have to do something about them. Participant 1 They also described how the plan was a tool that they used both during and after admission, as a guide to live a more satisfying life and avoid deterioration. By constantly coming back to using the rehabilitation plan, they gained insight to how they could manage their everyday life. Some participants also emphasised that the plan had guided them during their process, and by keeping to its content, it had supported them in their process of change. Reaching the goals by increased knowledge and experiences of how to solve the problems The participants expressed that the knowledge they gained during the programme had helped them to carry out their interventions in the plan. This process started already when the results from the assessments were discussed and incorporated into the rehabilitation plan. Because the professionals clearly communicated not only disabilities but also abilities as well as possibilities, this had taught the participants to link their disability with their daily life, for example, by setting goals relevant for their daily life. They emphasised the importance of being confirmed in understanding that they had a real disability that affected their everyday life, which could not be explained by laziness or an undefined illness. This awareness, together with the fact that they themselves could impact on how the plan was effectuated had changed their view of themselves and their identity, and made them more secure of their abilities and possibilities in life. They had also gained insight into their own resources in life and learned how to do things differently, and they had come to understand that the results from the rehabilitation programme were dependent not only physical training but many other interventions. For example, they had learnt how to limit the number of daily activities that they were engaged in and the importance of taking daily pauses. As one person shared: I thought it [the rehabilitation] would include more physical training but there are a lot of other things included.
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[Previously], I haven’t thought so much about how I do my activities ehh, to distribute lighter and heavier tasks during the day and the week, to take pauses and so on . . . They analyzed my doing when I cooked and baked . . . it was interesting. To learn that I’m not standing straight when I think I am . . . it is less training and more of learning about your body and to have balance [in life] Participant 5 Another example they expressed was how insight into their own resources, and how these could be used, had facilitated carrying out the plan, particularly after discharge when they had to incorporate the interventions in their daily lives. They emphasised the need to understand that rehabilitation and adapting to the changes in life was a process that takes time and lasts well beyond the time at the clinic. Another aspect that they expressed was how they had realised that the outcome of the programme was dependent on many people, not only the professionals, but also family members, employers and other health care professionals. Yet, they said they now felt confident, since the plan also involved contacts outside of the clinic. Being at the centre of the rehabilitation team The participants expressed that attitudes and understanding from the professionals were very important and had led to a positive approach. They said that the professionals believed them and listened to their needs, and when they trusted the professionals it was easier to be open and talk about problems that needed to be attended to. This made them experience the rehabilitation as a process performed in agreement between them and the professionals, where they were part of the rehabilitation team and the plan served as their mutual tool. The participants emphasised that one crucial aspect for a mutual agreement during the rehabilitation was the fact that the professionals did not use medical terms and concepts just known to them. Instead they used plain language and focused on aspects in everyday life, relevant for each participant. Thereby, the participants felt confident and could rely on the professionals’ knowledge. As shared by one of the participants: . . . they are ordinary people and easy to talk to . . . it makes it easier for me to talk about problems and things I need help with. They don’t use healthcare terminology and such but they use plain language which makes it easier . . . then I can open up and feel confident. Participant 3 Another aspect that the participants described was how they felt that their abilities were central during the rehabilitation process. Because they had taken part in formulating the rehabilitation plan, the goals in the plan were relevant for them. The goals also influenced the pace of the rehabilitation process and the implementation of different interventions was decided by them and not the professionals. If the participants were too tired or too emotional, professionals waited until the participants were ready for the next step.
Being involved in a staff-directed rehabilitation process, where not much has changed This subcategory emerged from two participants’ experiences of a staff-directed rehabilitation process, where not much in their lives changed, during or after the rehabilitation programme.
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Deciding to rely on professional knowledge The participants said the team had all the knowledge and because they did not have any themselves, they had to rely on the professionals’ decisions. As narrated by one participant: . . . it is nice that they [the professionals] know what they are doing because I don’t have a clue about this [rehabilitation issues]. Participant 6
Vaguely recognizing the rehabilitation plan
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The participants expressed that they were not sure if the plan was important or not, and thought it was mainly for the professionals and not for them. They said they did not experience that the plan had any influence on the interventions they were offered during the programme, and they did not remember which interventions that were written in the plan. One person had a vague picture of what was included in the plan during the programme. The other person shared this quotation: . . . I don’t really know which paper you are referring to . . . [ sighs] . . . the only thing I wrote down was my wish for my leg [to be restored] . . . Participant 4 They also emphasised that they did not have the competence to use a rehabilitation plan. They experienced that they had not received instructions of how to use the plan, and had a too tight schedule when they were writing the plan, and therefore found it difficult to use it. Having other things on one’s mind The participants told that they prioritised other things in parallel to the rehabilitation programme and their rehabilitation plan. One participant said that after the programme, all time was spent caring for the spouse, and the other participant shared that instead of thinking about the plan, time was spent on thinking how to manage work in order to provide the spouse (also working in the family business) with an old-age pension. The participants reflected upon the programme as a period of temporary rest and respite, where they had had the opportunity to leave their worries and their house chores behind for some time. They also said they had not thought much of their rehabilitation after discharge, and nothing had really changed in their homes and lives after rehabilitation. As described by this quotation: I haven’t thought so much of my rehabilitation since I got home . . . I felt better when I came home because then I had ehh I call it [the rehabilitation] rest, the week I had when I was there [at the rehabilitation centre], and it lasted a while but then . . . everything went back to how it used to be . . . I did appreciate the content as well as the rest during the programme . . . Participant 4
Discussion The main findings of this study were that before the start of rehabilitation, the participants had similar naı¨ve experiences and expectations. Then, two separate types of processes with different outcomes developed, where participants experienced their rehabilitation as being a mutually shared process or as a staffdirected process. The fact that some participants were more involved in their rehabilitation than others is recognised from clinical practice.
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It is known from previous studies that clients who actively engage in their goal-setting and rehabilitation process experience more improvements in managing everyday activities [4–6,12,13]. Yet, there is a lack of knowledge of how an active involvement can increase in clients who do not feel involved in their rehabilitation. Thus, the findings from the present study can add to the knowledge base needed to improve active engagement also in clients who experience their rehabilitation as staff-directed. Possibly, the rehabilitation need to be planned and implemented differently for these clients compared to those who experience their rehabilitation as mutually shared with the professionals. Participants who experienced that they were involved in a staff-directed process described rehabilitation as something the professionals had knowledge about and were responsible for. Apparently, they handed over the responsibility for their rehabilitation to the professionals and took on a more passive role, vaguely recognizing the content of their plan. One reason could be that other things in life took priority during and after rehabilitation, and they were therefore not ready for major alterations in life. Alternatively, they interpreted their health condition in agreement with a medical decision-making model [23], where clients reside in the hand of the experts. Interestingly, goals set by these participants focused mainly on self-reported body functions, self-care and mobility, whereas those who experienced themselves as being engaged in a mutually shared rehabilitation process identified a wider range of goals related to activities at home, work and leisure. All participants received education about the need to adopt life-long self-management strategies to reduce the progress of their disability. It is therefore difficult to understand why the participants identified goals that were so different. This could be a consequence of their limited engagement in their own process. The width and content of the goals can be an important ingredient that may facilitate rehabilitation outcomes beyond the scope of the specific goals, so-called secondary rehabilitation effects. Thus, these findings indicate the importance of supporting clients to set goals related to activity and participation, in agreement with the ICF [21]. Yet, the present study relies on data from a limited number of participants and focuses primarily on experiences in relation to the use of a rehabilitation plan, and not specifically on which goals that were set. Future studies should therefore explore whether the type of goals influence clients’ active engagement during the process as well as the outcome of rehabilitation. In addition, further research is needed to identify how professionals can support the establishment of goals that promote an active engagement, in particular when clients have difficulties relating rehabilitation to their possibilities to engage in activities in daily life. The experiences of the participants engaged in a mutually shared rehabilitation process reflect a number of active ingredients that influenced each other and generated synergistic effects. The participants’ relation to and interaction with the professionals throughout the process was experienced as an important ingredient for their outcome, in agreement with previous research [5,10,11,19]. Furthermore, previous research [24–26] has shown that the relationship and collaboration between the client and professionals is complex and influence planning, the realisation of a plan and outcome. Playford et al. [11] have also suggested that the goal-setting has a major influence on the relationship between the client and the professionals. In agreement with our previous study [19], the mutually shared dialogue about the rehabilitation plan, described by four of the participants, was an important ingredient that facilitated their active engagement and responsibility in the rehabilitation
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DOI: 10.3109/09638288.2015.1038363
process. The plan was as a tool that enabled them to understand the importance of taking an active role in the process and to empower them to various actions and changes. The role of the plan varied throughout the process. Initially, it supported the participants in identifying and acknowledging their problems, and in communicating and making professionals understand their problems in daily life. Later, the plan motivated them to continue their process of change. These findings suggest that the way the plan was used in the programme was in several ways beneficial for the participants. The experiences of those being engaged in a mutually shared process reflect that the process ended with a behavioural change, a fundamental aim in a goalsetting process to achieve sustainable changes through rehabilitation [4]. The present study therefore adds knowledge that can guide professionals in applying rehabilitation plans and goalsetting, facilitating active ingredients that are important for the long-term outcome of rehabilitation. Since this study used a qualitative methodology, the findings cannot be generalised to all people with late effects of polio. It can, however, provide a deeper understanding and create opportunities for transferability of the findings not only to this group of people but to those with other life-long neurological disabilities. Therefore, there is a need for further studies targeting people with other neurological disabilities, as clients may handle their rehabilitation process in different ways. A purposive sampling procedure was used, resulting in participants with a diverse background. As the participants had to speak and understand Swedish, no participant with another ethnic background was included. This is a limitation since an increasing number of people with late effects of polio from other parts of the world are now residing in Sweden. By including those participants this could have broadened the experiences shared by the interviews. Six participants were interviewed, which can be considered few, but because all of them were interviewed three times during their rehabilitation, the data collection was extensive. This strengthened the credibility of the study, since the participants were given several opportunities to share their experiences. The interviews also followed an interview guide with semi-structured questions, where some of the questions overlapped, and this gave the participants the possibility to provide many-faceted stories. Another strength was that the interviewer was not involved in the participants’ rehabilitation and did not share information from the interviews with any of the team members. Thereby, the participants could confidently share their experiences. Similarly, the analysis was performed by the first and last authors, together, but not by the second author as he was part of the rehabilitation team. The first author was responsible for the main analysis and the emerging findings were then scrutinised by the last author, which further strengthened the credibility of the analysis. In conclusion, when clients experience that they develop a mutually shared rehabilitation plan with professionals, they become more engaged in, and gain a better understanding of their own participation during the rehabilitation process. Knowledge of the differences how clients understand and manage their rehabilitation plan during the rehabilitation process, as well as how they can relate it to their daily life can support clients’ active engagement in their rehabilitation. It can also facilitate both clients and staff towards a more holistic view of rehabilitation for people with late effects of polio.
Acknowledgements The authors thank the participants who willingly shared their experiences. This work was accomplished within the context of
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the Department of Neurology and Rehabilitation Medicine, Ska˚ne University Hospital, Lund-Malmo¨, Sweden, Lulea˚ University of Technology, Lulea˚, Sweden, and within the context of the Centre for Ageing and Supportive Environments (CASE), Lund University, Sweden, funded by the Swedish Research Council for Health, Working Life and Welfare.
Declaration of interest This work was funded by Ska˚ne University Hospital, Sweden and Norrbacka-Eugenia Foundation, Sweden. The authors report no other declaration of interest.
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