Exploring the use of 'Exercise Buddies' to augment ... - IOS Press

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Physiotherapy Practice and Research 34 (2013) 67–74 DOI 10.3233/PPR-130019 IOS Press

Exploring the use of ‘Exercise Buddies’ to augment physiotherapy in the community for people with Multiple Sclerosis Elaine Toomey and Susan Coote∗ Department of Clinical Therapies, University of Limerick, Limerick, Ireland Received 2 September 2012 Accepted 25 February 2013

Abstract. BACKGROUND: Approximately 25% of people with Multiple Sclerosis (PwMS) are non-ambulatory, but little evidence exists for interventions within this population. Primary care physiotherapy in the community is a frequently used option for managing chronic conditions such as Multiple Sclerosis (MS), but access and availability is limited. A new model of care has used Exercise Buddies (paid professional carers) to exercise with PwMS under the direction of community physiotherapists. This study aims to explore the development, implementation and outcome of the programme. METHODS: Seven semi-structured interviews were carried out with the physiotherapists, Exercise Buddies, PwMS and the MS Ireland Co-ordinator who took part in the new model of care. Data were analysed using thematic analysis. FINDINGS: Analysis generated two main categories: Benefits and Communication Difficulties. Within Benefits, the main themes of Physical and Psychological Benefits for PwMS and Physical and Psychological Benefits for Carers emerged. Within Communication Difficulties, themes of Defining Roles & Expectations and Feedback & Communication During Implementation emerged. A subtheme of Insufficient Training of Buddies emerged within the theme of Defining Roles and Expectations. CONCLUSION: The Exercise Buddy system is a home-based intervention delivered at a community level, and has potential as a model of care with both physical and psychological benefits reported for PwMS and their carers. Issues discussed mostly related to communication and training. These need to be addressed for future successful development. Keywords: Multiple Sclerosis, community physiotherapy, non-ambulatory, Exercise Buddy, physiotherapy assistant

1. Introduction Multiple Sclerosis (MS) is a progressive demyelinating disease of the central nervous system which manifests in a variety of physical and cognitive symptoms [7]. Though no cure exists for MS, physiotherapy and exercise interventions are widely acknowledged to improve the quality of life (QoL), general health and well-being of people with MS (PwMS) [5, 16, 22]. A recent profiling study found that 26% of the total MS population who presented for physiotherapy were non-ambulatory [9]. Despite this, there is very ∗ Corresponding

author: Dr. Susan Coote, Department of Clinical Therapies, Health Science Building, University of Limerick, Castletroy, Co. Limerick, Ireand. Tel.: +353 61 234278; E-mail: [email protected].

little literature on exercise or physical management interventions specific to PwMS with greater levels of disability or those unable to mobilise [25]. As increased economic costs have been shown to be significantly correlated with greater disability levels [2, 13], in current economic times it is more pertinent than ever to find alternative, more cost effective ways of delivering physiotherapy services for this population. With chronic conditions such as MS, care needs to be continuous and consistent, spanning a lifetime rather than episodic [11]. The Irish Health Service Executive (HSE) has prioritised the development of Primary Community Continuing Care (PCCC) teams across the country [6]. As a result, primary care physiotherapy is becoming an increasingly relevant treatment option for individuals with chronic conditions, such as MS [14].

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E. Toomey and S. Coote / Exercise Buddies for people with Multiple Sclerosis

However, the evidence suggests that an average of only 3.55 hours of treatment was received by PwMS over a three month timeframe, the majority being seen in a primary care setting [9]. This again highlights the need for innovative ways of delivering more evidence based interventions with ever decreasing resources. 1.1. The “Exercise Buddy” system The aim of the Exercise Buddy system is to optimise the use of physiotherapists’ time whilst ensuring that people with MS get enough intervention to make a difference. An “Exercise Buddy” is a paid professional carer who is specifically employed to work on a prescribed home-exercise programme with a client under the guidance of a PCCC physiotherapist. At the first joint visit, the physiotherapist prescribes a 10-week home exercise programme (HEP) for the person with MS to carry out with the Exercise Buddy once a week. The programme is then delivered weekly by the buddy who maintains regular contact with the physiotherapist to monitor progress. The aim of this study was to retrospectively explore the development, implementation and outcomes of an ‘Exercise Buddy’ model of care for people with Multiple Sclerosis. The objectives were to explore the experiences and opinions of various stakeholders and to learn from their experience in order to further develop the model of care.

views were chosen as they allow flexible expression of opinions and open-ended communication, yet guide participants enough to maintain the discussion on topic [10]. A topic guide was developed for each category of interviewee (Table 1). The questions in all topic guides were similar but tailored slightly for each category to reflect the different roles of the participants within the study. Interviews were carried out by the lead researcher and took place at the homes of PwMS, and at the offices or clinics for the MSI Co-ordinator, physiotherapists and buddies. Interviews were audiotaped and transcribed verbatim and an in-depth thematic analysis was employed [3]. A reflective analytical memo was kept in order to achieve rigour or ‘trustworthiness’ of data, by demarcating the analysis process clearly [23]. Initially, transcripts were read and reread a number of times with the aim of immersing the researcher in the data. Each line of the transcripts was analysed and coded to identify key concepts or ideas. Concepts discussed within transcripts were then summarised and coded and these codes were then collated into broad themes. Initial broad themes were then further refined until final themes and categories were identified. Quotes that best reflected the themes and categories were selected to illustrate the results. To ensure high quality data interpretation, member checking was carried out with the participants by sending them a summary of the overall findings. All participants agreed with the results of the analysis and that it was an accurate representation of what had been discussed during the interview.

2. Methods Ethical approval for the study was granted by the University of Limerick Faculty of Education and Health Sciences Research Ethics Committee. Written informed consent was obtained from all participants. Participants were recruited from the physiotherapists, buddies and PwMS and their carers who were involved in the delivery of the first Exercise Buddy model of care. The original co-ordinator of the study from the MS Society was also invited to take part. Inclusion criteria for the study were that participants must be over the age of 18 and must be fluent in English. PwMS who took part were required to be non-ambulatory. A qualitative design was deemed to be the most appropriate as the focus and aims of the study were exploratory and inductive [15]. Semi-structured inter-

3. Findings Seven semi structured interviews were conducted with nine participants: two physiotherapists, two Exercise Buddies (with their supervisor present), the MSI co-ordinator, and two PwMS (one with his carer/wife present to facilitate communication due to his speech difficulties). Interviews ranged from 31 to 66 minutes in length, with an average duration of 53 minutes. One of the Exercise Buddies (Buddy 1) was a trained physiotherapist working as a Buddy. Both PwMS had been living with MS for over 15 years and both physiotherapists were experienced with working with PwMS. Extensive thematic analysis found that themes could be categorised as either Benefits or Communication Difficulties. Within the category of Benefits, the

Background to Exercise Buddy system:

Developing Exercise Buddy Implementing Exercise Buddy system: system:

Buddy: How did you feel about being asked to do this?

PwMS, Carer: How did you feel during the system?

MSI Co-ord, PT: How could you be sure that buddies were actually doing what they were supposed to be doing?

All: Thank participant

Conclusion:

How did the system affect you?

How do you feel the study went?

If you were to redo the study, is there anything you would change or do differently?

What were the overall attitudes/feedback of people involved?

Any results that you weren’t expecting?

Any changes in carer/PwMS? Biggest changes you saw?

Did you expect to feel this way?

Inquire if there is anything else they would like to add

How did you obtain these? What did Summarise briefly you measure? what was discussed

All: What were the results?

Outcomes of Exercise Buddy system:

What are your overall opinions of the PT: system? How did you feel about this system? Any issues with training buddies to PwMS, Carer: do physiotherapy roles? Any safety How did you feel at the end of the study? concerns?

MSI Co-ord: Multiple Sclerosis Ireland regional co-ordinator; PT: physiotherapist; PwMS: person with Multiple Sclerosis.

MS?

Where or how did idea of an Were you involved in the On return visits, did physio treat, or Exercise Buddy system development of the system? just observe buddy system? come from? What was your role? Was the buddy present in all the PT, PwMS, Carer, Buddy: followup visits? What were your opinions on How long did Buddy System run for? the idea of an Exercise Is it still going on? Buddy system? MSI Co-ord: PT, Buddy: What did you tell participants about What is your experience the study? working with people with

All: MSI Co-ord: All: What are your opinions What process did you go Who showed physiotherapists what on/beliefs regarding need through to set it up? i.e. to do/what to tell buddies? Was for improvements to routine first step? this standardised? How did this Thank participant for community physiotherapy? compare to normal carer training? coming Who was involved? How What was/is your were they involved? i.e. What exactly did Introduce project topic understanding of “routine” permission/consent – PT physiotherapists/buddies do? How physiotherapy care? managers/HSE etc did this compare to normal carer Outline interview duties? structure MSI Co-ord: PT, PwMS, Carer, Buddy:

All: Introduce self to participant

Introduction

Table 1 Topic guide for interviews

E. Toomey and S. Coote / Exercise Buddies for people with Multiple Sclerosis 69

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main themes of Physical and Psychological Benefits for PwMS and Physical and Psychological Benefits for Carers emerged. Within Communication Difficulties, themes of Defining Roles & Expectations and Feedback & Communication during Implementation emerged. A subtheme of Insufficient Training of Buddies emerged within the theme of Defining Roles and Expectations. 3.1. Benefits The benefits and positive aspects of the Exercise Buddy model were mentioned by all nine participants. Some benefits for physiotherapists such as saving time and the peace of mind achieved in boosting patient care were briefly mentioned by the two physiotherapists and Buddy 1. A combination of physical and psychological benefits of the Exercise Buddy system related mostly to the PwMS and also to their carers. “[Improvements are] really down to the buddy system. It is incredible, it really is. It is something that you can’t even imagine. As well as just the emotional impact. Physically, and it gives us the independence.” – (Carer of PwMS 2) 3.1.1. Physical and psychological benefits for PwMS All nine interviewees spoke about the benefits for PwMS. Pain relief, upper and lower limb mobility improvements and better positioning were mentioned by different participants, and positive outcomes in range of movement were described by both physiotherapists, both buddies, the MS co-ordinator and the carer. One of the physiotherapists also noted how maintenance of the existing function and physical ability of the person with MS was a major result of the intervention. The psychological benefits reported by all nine participants included increased motivation levels, enhanced confidence and emotional satisfaction derived from the company of the buddy. The relationship between the buddy and the person with MS was considered important to the success of the intervention by most. “It sort of boosts your enthusiasm a bit as well in that the buddy comes, puts you through these motions and then you feel well Jesus I must be ... I am making an effort. And honest to God you know an awful lot of, now I can only speak of MS, but my

experience for it is half is psychological and the other half is physical ... ” – (PwMS 1) 3.1.2. Physical and psychological benefits for carers Both buddies and their supervisor, the MS coordinator, the carer, one of the physiotherapists and one of the PwMS spoke about the benefits the system had on carers of PwMS in terms of eased carer burden, both physically and psychologically. The increase in support gained by carers from the regular visits from the buddy was described by the MS co-ordinator, Physiotherapist 1 and the carer to be beneficial because of the fact that the care load was being shared by another. “I found it incredibly helpful because I am the main person who does physio with [PwMS 2], every day to the extent that I can do it. But the physiotherapists are incredibly resourceful from each and every one of them. They will give me tips.....” – (Carer of PwMS 2) In addition to the psychological benefits accrued by the carers, the physical load of caring was also alleviated. This was postulated by most to be due to the enhanced range of movement experienced by the PwMS that made functional activities of daily living such as dressing, bathing and general handling easier. “Their home helps and their carers say that it’s [the exercise programme] huge. That it makes the legs and the hips looser for turning.” – (Buddy 2) Although benefits of the Exercise Buddy system was one of the most discussed categories in the study, and was talked about by all participants in the study, it is important to recognise that some difficulties were experienced. This was summarised well by one participant who recognised the difficulties with communication and training that had been experienced during the study: “I personally think it is great. It is potentially very challenging and it could be absolutely brilliant, but there are a good few issues to be dealt with.” – (Buddy 1) 3.2. Communication difficulties The difficulties experienced during the pilot scheme often overlapped, and was included in the overarching category of Communication Difficulties.


“I think just the communication needs to be very much clarified from the beginning, and that was definitely something that kind of frustrated me.... it would be better if we just had a very clear plan from the very start with *Care Agency*..,... We really need feedback.” – (Physiotherapist 2) A substantial issue frequently discussed was the insufficient training of the buddies, which was deemed to be due to a lack of clarification of roles and expectations of the respective participants in the initial stages of the system development, a theme also thoroughly discussed in its own right. This lack of clarification was reasoned to have been caused by an overall deficiency in communication and feedback between all of the various groups of participants involved from the outset. 3.2.1. Feedback and communication during implementation Poor communication and feedback was observed by most to have occurred consistently throughout the implementation of the system. Though regular contact between the physiotherapists and the buddies was originally intended, it was reported that this did not occur sufficiently. Similarly, the MSI coordinator noted difficulties in making contact with the physiotherapists and the care agencies. “It probably could have been a little more joined up, and I don’t think that’s a criticism of any one group, but I suppose barriers do crop up when you are dealing with totally separate organisations.” – (Physiotherapist 2) All participants, with the exception of the PwMS and their carers were in agreement regarding the issues surrounding communication between the three organisational entities – the MSI, the community physiotherapists and the buddies and their care agency. “I personally think it is very disjointed at the moment. And I was saying this earlier on, there should be meetings of the three.” – (Buddy 1) In general, most felt that the involvement of three separate bodies with no one coordinator overseeing relations and contact between all of the groups led to a somewhat disjointed implementation of the intervention. It was mostly felt that this could be easily rectified by outlining what the expectations of communication were from the start, and by establishing

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appropriate protocol for frequent communication and feedback between the three organisations. 3.2.2. Defining roles and expectations A theme discussed by the all but one of the participants was the need to define the roles and responsibilities of all stakeholders. “I think we need to clarify the role, what is the role of the exercise buddy.” – (MS Coordinator) It was agreed by most participants that what was to be expected of each participant in the Buddy System should be clarified from the outset, and that who was to organise and coordinate the various aspects of the programme needed to be stated. “The bottom line is they still need the basic . . . there needs to be something set up as in who is going to organise it, who is going to do it.” – (Buddy 1) 3.2.3. Insufficient training of buddy A major pitfall of the pilot project appeared to be the lack of structured training that the buddies had before taking part in the study. Responsibility for training of the buddy was ambiguous during the initial stages of the study, as most participants had not realised that it would be an issue. “The pitfall we made really was that we didn’t ascertain how much training the exercise buddies had....we assumed ... that the buddy would have a certain amount of training..... when we went out the buddy didn’t really have any training whatsoever..... I wasn’t happy for her to go ahead.” – (Physiotherapist 1) It was a recurrent issue commented on by seven out of nine participants, and that adequate and appropriate training was imperative in order for the system to be successful and safe. “They must have had some level of training, because otherwise it could be dangerous. Or it wouldn’t be of much benefit because an ignorant buddy is a liability. They can’t do these things. They could cause more trouble than be helpful.” – (PwMS 1) Overall, most described this as one of the key issues in the system, but again could be ameliorated by adequate communication during the planning stages of the program.

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4. Discussion This study set out to explore stakeholder views of an Exercise Buddy model of care delivery in the community. In general, there appeared to be a combination of positive and negative aspects to the experience of the Exercise Buddy system. The positive aspects were the physical and psychological benefits experienced by both PwMS and their carers. The negative issues were the insufficient training of the buddy due to ill-defined roles and expectations of those involved, along with insufficient communication and feedback throughout the implementation of the system. These pitfalls were mainly due to overall communication difficulties from the outset of the programme. Though problems were discussed more frequently than the benefits, this is unsurprising as the focus was to learn from the original study to inform future implementation. Impairments such as range of motion, mobility, and pain and their effects on function are common in PwMS [8, 19, 20], and all impairments mentioned by participants to have improved from Buddy Care featured highly in the main problems reported by 293 PwMS surveyed in Ireland [9]. Participants also reported benefits for the carers of PwMS. Several qualitative studies have been published examining the needs and health of carers of PwMS, however, few intervention studies have directly examined the effects of the intervention for the participants’ carers [17]. With severely disabled PwMS, the strain of caring may be even greater, as disability level has been proposed to be directly proportional to the level of assistance required from a carer [12]. It is therefore increasingly important to develop and evaluate interventions that positively impact both the PwMS and their carers in this more disabled population. Underpinning all of the problems mentioned in the interviews was the lack of communication between the organisational entities of the system. Communication difficulties within MDTs have been well reported in the literature, including much of the research specific to community and primary care settings [1, 18]. Interestingly, a research synthesis of existing qualitative literature [1] on multi-disciplinary primary care teams noted similar findings to those of this study. The synthesis concluded that the development of clear roles was considered to be one of the main strategies to bring about effective cooperation within MDTs in the primary care setting. Other studies have suggested that role ‘blurring’ can bring about stress and confusion within MDT

primary care teams [18], and Belanger et al. [1] found that when the allocation of labour is unclear, conflicts may arise which can affect the quality of care provided. This study found that the lack of definition of roles and expectations should be addressed by maintaining reciprocal communication with ongoing feedback, similarly concluded by previous studies [1, 4, 18]. The appropriate and adequate training of Exercise Buddies was found to be crucial to the success of the Exercise Buddy system. An alternative option to the professional carers would be the introduction of physiotherapy assistants by the HSE into PCCC physiotherapy, as are currently in use in HSE hospitals nationwide. Physiotherapy assistants could be used as Exercise Buddies to increase the amount of treatment that people with MS and other chronic conditions receive without substantially increasing the PCCC physiotherapist workload. This would also reduce the number of stakeholders involved, making communication issues less problematic. The existing literature on physiotherapy assistants suggests that they play a vital role in the delivery of physiotherapy, but must be well trained in order to give a high quality service [21]. As previously stated by Saunders [24], investment in training of physiotherapy assistants could bring improvements in cost effectiveness and quality of care. Several limitations must be borne in mind when considering the implications of the study findings. A significant factor of note was that one of the buddies was a trained physiotherapist working as a buddy (Buddy 1). Certain benefits reported by clients of this buddy may be biased because of her level of training and experience. Nonetheless, it must be acknowledged that benefits were also reported by clients of buddies who were trained carers. Physiotherapists did not use standardised outcome measures; therefore benefits were anecdotal only and based on feedback from the carers and PwMS themselves. Also, the care agency supervisor for the buddies was present for both interviews, which could potentially have influenced the openness and expressiveness of the buddies. As with many qualitative studies, there was a small sample size in this study mostly due to time limitations. However, it is important to note that a spread of opinions from each of the different stakeholders of the intervention was obtained and that in general the level of consensus between participants was high. As the overarching issue in the study appeared to be the lack of communication between the groups, it


is recommended that initial and on-going meetings of all organisational entities should take place, before the system is to be used in an area. The aims of this meeting should be to develop a ‘team’ ethos and to: 1. Establish roles and expectations of all involved. 2. Agree on and establish a regular contact/ feedback protocol. 3. Ensure adequate training of Exercise Buddies.

5. Conclusion Seven semi-structured interviews were carried out with nine participants of a pilot study of the Exercise Buddy system including PwMS and their carers, physiotherapists and Exercise Buddies. The Exercise Buddy system is a home-based intervention delivered in the primary care system, and appears to have excellent potential as a model of care with both physical and psychological benefits reported for PwMS and their carers. Though the system has potential, issues were discussed mostly relating to communication and training that need to be addressed in future to ensure its success. To fully evaluate the effects and feasibility of the system, a pilot randomised controlled trial should be completed taking the findings of this qualitative study into account.

Acknowledgments The authors would like to acknowledge the people with MS, community physiotherapists, MS Ireland staff and all who took part in this study. We would also like to thank Nancy Salmon PhD, OTR/L for her assistance with data analysis.

Funding This work was supported by Multiple Sclerosis Ireland through the National Lottery of Ireland.

Conflict of interest The authors declare that there is no conflict of interest.

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