PARAS FAQ & Observations
These questions and answers were informed by the PARAS feasibility study.
If you have any questions that haven’t been answered please get in touch with the PARAS team who will be more than happy to help.
Workbook
The workbook has been provided as a structure to make sure that the programme is delivered in the way intended to increase the likelihood of a successful outcome. However, the steps in the workbook don’t need to be undertaken in exactly the order they are laid out.
For example if the stroke survivor starts the conversation by talking about who has been supporting them since they have had their stroke, it would be worth discussing whether this person would support them in the PARAS programme rather than redirecting the conversation to the order of the workbook. The important thing about any person-centred conversation is that it is led by the stroke survivor.
The skill of the healthcare professional is in allowing the patient to lead the conversation, whilst ensuring all the elements of the intervention are included in that conversation.
Healthcare professionals in the PARAS feasibility study found they were initially quite reliant on the workbook to structure their conversations with stroke survivors. However, once they got to grips with the programme they were able to adapt it to the stroke survivor's needs. We would advise practicing delivery with your peers before delivering PARAS with a stroke survivor.
Research has demonstrated that you are more likely to achieve a goal if you write it down. Therefore encourage stroke survivors to write down their goals etc. in the work book or on the goal summary sheet. To allow the flow of conversation this may be better done at the end of the session rather than as you go along. If the stroke survivor has speech and language problems, it may not be appropriate for them to write in the workbook and you or a family member may have to assist with this.
We have provided you with a goal summary sheet which could be stuck on a fridge etc. as a memory prompt. If the stroke survivor is struggling to fill out the work book you may want to just advise them to fill out the summary sheet instead.
We were aware when designing PARAS that many research based interventions excluded people with speech and language and cognitive problems. We wanted PARAS to be as inclusive as possible. With this in mind we worked with an aphasia research group to design a variety of icons which could be used as communication ramps for discussing the benefits of physical activity, outcomes of being physically active and different activity choices.
We would suggest when working with people with marked aphasia rather than using the workbook, to use the icons instead to support conversations around goal setting etc. We are working with the aphasia research group to adapt more of the PARAS resources.
Goal Setting
Feedback from the PARAS feasibility study indicated some stroke teams already had a structured goal setting process. This process had been completed before participants took part in PARAS, therefore the goal setting in PARAS felt quite repetitive. In the feasibility study although the time to start the intervention wasn’t specified (e.g. we recommended the start time for PARAS was person centred) a lot of the healthcare professionals didn’t introduce PARAS until the point when they would normally discharge their patients. PARAS was used as a method of starting self-management and as a means of reducing the need for healthcare professional input.
Ideally PARAS should be started when the stroke survivor first expresses an interest to move more or sit less or this is identified by the healthcare professional and the stroke survivor agrees to this. This could be when the stroke survivor is on the ward and they want to break up the time they spend sitting or want to start to walk more/further. Or they might want to start when they get home when there are more opportunities to be physically active. If the PARAS programme is delivered at the right time it should not overlap with other goal setting but be the start of goal setting. The PARAS programme could also be used during multidisciplinary goal setting. If a patient identifies a physical activity goal this could be further explored using PARAS.
PARAS is not about therapist identifying goals for the patient, but about stroke survivorsidentifying their own goals. Interestingly in the PARAS feasibility study some of the participants identified the goal setting process undertaken in PARAS was very different to the goal setting they had been involved in previously where it had been very therapist led.
After the patient has set their long-term goal and identified a few activities to help to achieve it, should they then identify a few short term goals in line with these activities? For example, they may choose to exercise indoors, in the gym and do outdoor walking. Would this mean completing three separate short-term goal sheets and therefore three different summary sheets, or are we just expecting them to have one goal at a time which would be reviewed after a few weeks before setting a new goal?
In order to help stroke survivors understand the goal setting process and to aid them to self-manage their goal setting in the future, we advise setting one goal at a time.
If there are a number of activities they want to do, get them to think about what they would like to do most. This needs to be paired with how confident they are that they can achieve their goal around this activity. If they achieve this goal but feel they can do more by introducing another activity support them to set a goal around this the next time.
In order to help stroke survivors understand the goal setting process and to aid them to self-manage their goal setting in the future, we advise setting one goal at a time.
If there are a number of activities they want to do, get them to think about what they would like to do most. This needs to be paired with how confident they are that they can achieve their goal around this activity. If they achieve this goal but feel they can do more by introducing another activity support them to set a goal around this the next time.
It is important to not ‘burst anyone’s bubble’. We can never be sure whether or not a person will achieve their long-term goal. Even if our experiential knowledge indicatesthe patient is highly unlikely to achieve the goal, they still should be encouraged to set it. Even if they go on to not achieve their long-term goal it is part of the self-management process understanding why this might be the case. When setting their short-term goal however they should be encouraged to choose something they feel confident they can achieve (using the confidence scale).
We had one participant in the PARAS feasibility study who identified a long-term goal of fishing. This participant had no active movement in their upper limb and it was six months after their stroke.
The healthcare professional encouraged this long-term goal, but then focused on a short-term goal that he was confident he could achieve (e.g. on the confidence scale he scored over 7/10). He achieved his short-term goal but going through this process he came to the realisation that his long-term goal wasn’t realistic and he altered it.
Involvement of Family Members
One of the important elements of the intervention is identifying social support and this may well come from a family member. If this were the case it would be very important to involve this person in the process. If however, it is apparent that it will be difficult to deliver the intervention with a family member present it would be worth potentially discussing involving the family member after the initial discussions have been completed. This would allow time and space to discuss things with the stroke survivor one-on-one.
In this instance it would be worth asking if the stroke survivors would be interested in joining a local support group or an online group.
Both the Stroke Association and Different Strokes in the UK run support groups, online forums and befriending services.
Physical Activity Delivery
Seated exercise groups may be an option. Age UK run a number of seated exercise classes. There are also a number of online seated exercise classes including one run by Different Strokes. For stroke survivors who have limited function, initially it might be worth focusing on actions that reduce sedentary behaviour e.g. regular sit to stand to break up sitting time. It might be easier and safer to target sedentary behaviour and this will hopefully lead to a gradual increase in activity and fitness.
Stroke patients are more likely to engage if they actively agree to participate rather than being persuaded to take part. Sometimes framing the way you present PARAS can help to engage a patient.
Starting a conversation with a statement that gains permission from the stroke survivor can be helpful e.g. "Would you mind if we talked about something that could improve your health and wellbeing?"
This is more likely to gain engagement than saying something like "I would like you to take part in PARAS as I think you need to move more and sit less and this will improve your health and wellbeing."
If they are still not interested, it might be worth providing them with the PARAS invite and then they can contact you if they change their mind.
Initially ensure that the stroke survivor has no contraindications to cardiovascular exercise (see healthcare professional delivery resources for a list of contraindications). If they have no contraindications the most important thing is to start to build cardiovascular fitness gradually from the stroke survivor’s baseline. If you are concerned about whether a stroke survivor is safe to undertake cardiovascular exercise please contact their GP or consultant.
The Royal College of Physicians Stroke Clinical Guidelines (2016) recommend people with stroke or TIA should aim to achieve 150 minutes or more of moderate intensity physical activity per week in bouts of 10 minutes or more (e.g. 30 minutes on at least 5 days per week).
This can be achieved through a number of different cardiovascular activities e.g. fast walking, cycling, swimming, running, depending on the patient’s preference. You could use the Borg Scale to measure the intensity the stroke survivor is exercising at (see delivery resources)at what intensity the stroke survivor is undertaking the activity (see healthcare professional resources). When the stroke survivor isy areworking at a moderate intensity, they should still be able to talk but won’t be able to sing!
There is evidence demonstrating the benefits of physical fitness training after stroke on disability, walking and balance.
Saunders DH, Sanderson M, Hayes S, et al. Physical fitness training for stroke patients. Cochrane Database Syst Rev. 2020;3(3):CD003316. Published 2020 Mar 20. doi:10.1002/14651858.CD003316.pub7
It is important to find an activity to increase cardiovascular fitness that is sustainable and accessible e.g. an exercise class that runs continuously that the stroke survivor can access and is affordable. Some stroke services may have their own stroke and exercise classes. In the UK the Stroke Association and Different Strokes may run local classes, or Different strokes runs online classes. Age UK offers a number of different non-stroke specific classes for all levels of ability.
You may also be able to refer stroke survivors to a local exercise on referral scheme. But, make sure if this is not a continuous scheme there is a plan in pace for sustaining exercise after the scheme finishes.
Contraindications
As long as there are no contraindications related to her exercising whilst pregnant and goal setting takes into account the pregnancy there is no reason she would not be able to take part in PARAS. Improving activity levels prior to the birth of the baby could have a number of positive impacts on health and wellbeing and could potentially improve recovery after the baby is born. Any increases in physical activity would need to be gradual.
There are a number of contraindications to taking part in structured exercise after a stroke (see delivery resources). If you have any concerns you should get the stroke survivor to check with their consultant or GP that they are safe to exercise.
If the stroke survivor’s goal focuses on low intensity activity there shouldn’t be any concerns. The risk of death when undertaking exercise is very low and the benefits of taking part in physical activity far outweigh the risks.
For the majority of people wishing to take part in light to moderate intensity activity, medical screening isnot required and is often an unnecessary barrier.
Outcome Measures
Mental wellbeing is commonly affected by stroke. Occasionally reflection on the WEMWBS statements may generate distress. It is important that stroke survivors can recognise that their mental well-being may have been affected by their stroke.
If this happens during the completion of WEMWBS it can be the first step towards the stroke survivor recognising this may be a problem and seeking help. During the PARAS feasibility study moving more and sitting less often led to improvements in well-being.
In some circumstances however, the stroke survivor may need specialist help and may need to be referred to other services within your organisation. Or stroke survivors could be signposted to organisations offering free services like Mind or Samaritans in the UK.
Ideally the outcome measures should be delivered as originally intended to allow an accurate record of progress.
The outcome measures are also there to highlight potential issues that may affect the stroke survivor moving more and sitting less that you may wish to discuss further in your consultations.
The outcome measures are an important part of the process as they can expose issues that you may wish to discuss later in the goal setting stage. They provide a baseline to measure progress and they can be used to collect data to support the use of PARAs within your service..
That being said, if for any reason the stroke survivor doesn’t want to complete the outcomes, PARAS can be adapted, and they can be left out. If the stroke survivor has speech and language problems the completion of the outcomes may be problematic. It therefore would be better to leave the outcome measures out and focus on the goal setting using the icons provided as conversation ramps (see delivery resources).
Pedometers are designed to be used with ‘healthy populations’. This can limit their accuracy when used with stroke survivors with gait impairments. We selected a pedometer in the PARAS feasibility study based upon stroke survivor feedback, preliminary testing, price point (to allow them to be a feasible tool to be used in practice) and previous successful use of pedometers in walking interventions in stroke.
Sullivan, J.E., Espe, L.E., Kelly, A.M., Veilbig, L.E. and Kwasny, M.J., 2014. Feasibility and outcomes of a community-based, pedometer-monitored walking program in chronic stroke: a pilot study. Topics in Stroke Rehabilitation, 21(2), pp.101-110.
When we tested the feasibility of using our chosen pedometer in our study we did observe limited accuracy with a number of participants . These participants tended to have marked lower limb impairment and slow gait speeds. This finding was in line with previous literature demonstrating reduced pedometer accuracy with stroke survivors with low gait speeds:
Carroll, S.L. et al (2012). The use of pedometers in stroke survivors: are they feasible and how well do they detect steps?. Archives of Physical Medicine and Rehabilitation, 93(3), pp.466-470.
We would recommend only using pedometers with stroke survivors who have relatively normal gait speeds (>0.5m/s) and low levels of impairment. For those with slower gait speeds whose goal is focused on increasing step count, we would recommend either manually counting steps (or getting a family member / friend to do this to reduce dual tasking) or using distance as a surrogate measure of steps. Distance walked could be measured by an app like ‘map my walk’ or by using local landmarks.
In our feasibility study some stroke survivors found fitness trackers were more accurate for measuring steps then pedometers. Butfitness trackers still did not accurately measure all steps. Like pedometers, fitness trackers are designed on unimpaired walking patterns therefore may not be suitable for stroke survivors with impaired gait.