PARAS FAQ & Observations
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 is a tool to support delivery of the key components of PARAS. Some stroke survivors have valued using the whole workbook to structure and keep a record of their progress through the programme. However, for some stroke survivors it may be more appropriate to use certain sections of the workbook to support delivery. For example, if someone has communication problems it might be helpful to use the pages with icons as communication ramps and avoid the pages with more text.
The workbook is simply a tool to aid discussion. 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. Practicing delivery with peers can reduce reliance on the workbook.
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 in the workbook or on the goal summary sheet. To allow the flow of conversation it mya be better to do this 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.
Some stroke survivors will prefer to type into the workbook and save a copy of it. This also enables Healthcare professionals to save a copy of the workbook in clinical notes. It might also be worth asking these stroke survivors to write down their goal on the goal summary sheet. The sheet could be displayed somewhere to help them remember to keep working towards their goal e.g. on the fridge.
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. We worked with an aphasia research group and speech and language therapists to design aphasia friendly resources to aid discussion of each of the key components of PARAS e.g. benefits, outcomes, PA diary, activity choices, goal setting.
We would suggest when working with people with marked aphasia rather than using the workbook, to use these resources and to work with informal carers and speech and language therapists to enable delivery.
Goal Setting
If your service already undertakes multi-disciplinary goal setting it would be worthwhile exploring whether this includes the key components of PARAS. Our feasibility study indicated that PARAS was different to the ‘usual care’ stroke survivors had received before PARAS. PARAS was perceived as more ‘person-centred’ and less prescriptive. If your current goal setting covers all the key components of PARAS, it would not be worthwhile implementing PARAS. In some cases, some of the PARAS components may already be delivered e.g. goal setting, but other key components such as self-monitoring may be missing. It would be worthwhile then exploring how the missing components could be added.
Stroke survivors may have more than one goal they wish to work on. If this is the case, it would be worth discussing each goal individually and completing a goal summary sheet for each. Some goals may be quite broad but require a lot of planned activities to support achievement.
It is important to not ‘burst anyone’s bubble’. We can never be sure whether a person will achieve their long-term goal. Even if our experiential knowledge indicates the patient is highly unlikely to achieve their long-term 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. This aided his insight into his recovery.
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
PARAS delivery should be supported by a ‘credible source’. This can be anyone who has knowledge of stroke and physical activity. This could be a physiotherapist, occupational therapist, fitness instructor, charity worker, GP etc.
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.
All stroke survivors who wish to take part in aerobic fitness training should have been screened by a healthcare professional to ensure they are medically stable in terms of cardiovascular, haemodynamic and neurological status. An assessment should be made as to whether the stroke survivor has any contraindications to exercise alongside an assessment as to whether their stroke impairments will limit participation. If there are any concerns the stroke survivor's GP or consultant should be consulted. Intensity of exercise should be progressed slowly and unless an exercise stress test has been undertaken high intensity exercise protocols are not recommended. If deemed safe stroke survivors should be aiming to exercise at a moderate intensity to improve fitness e.g. increased breathing but still able to talk but not sing.
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.