Blog: Raising awareness of respiratory issues in Parkinson's through research

As an acute care physiotherapist, I am frequently involved in the assessment and management of people affected by Parkinson's who have been admitted to hospital with respiratory symptoms.

For this patient group, pneumonia is the main cause of non-elective admission to hospital and sadly it is also the main cause of death. This important topic is unfortunately rarely talked about. I felt that this needed addressing and so focused the final year of my MSc qualification on undertaking research. 

Embarking on my first piece of research was a steep learning curve but I felt motivated to do my part to help develop and promote quality care for people affected by Parkinson's. My study, published in the International Journal of Therapy and Rehabilitation, begins to discuss some of the key issues identified through exploration of the experiences of physiotherapists involved in the care of this patient group. Read the full study.

Recognising respiratory symptoms

Symptoms of a chest infection may be similar for both those affected and unaffected by Parkinson's. Yet for those with Parkinson's, there is a concern that symptoms can occur suddenly and present a real struggle as a direct result of the underlying and progressive neurological processes.

Also, some symptoms of Parkinson's, such as weakness and rigidity of the respiratory muscles, mean this patient group needs additional support from a physiotherapist with improving mobility and aspects of care such as coughing and clearing secretions.

My research aimed to explore the experiences and perceptions of physiotherapists involved in the care of people with Parkinson's disease and respiratory compromise. To capture this information, I used qualitative research methods. Participants took part in a focus group and kept personal diaries over a 3 month period. This allowed me to gain a personal insight into the physiotherapists' experiences and clinical reasoning.

Considering treatment options: the importance of advance care planning

The physiotherapists in this study present a sensitive understanding of how hospital can challenge identity and independence.   Physiotherapists employ many different treatment options to support someone's breathing. Some of the techniques could be regarded as quite invasive, yet this study reflects on the physiotherapists' overriding concern for the patients' comfort and wellbeing, alongside the importance of establishing whether the individual wants the treatment being offered.

Unfortunately, there are times when the individual is too poorly to really understand what is being offered. These situations lend support to the value of advance care planning in resolving some of the ambiguity health care professionals face when a patient is unwell and unable to express themselves.  

Important findings, challenges, and a need for more research

This study highlights the importance of anticipating care needs as well as prioritising care planning and identifying patient choice.  There is no doubt about the importance of access to professionals with a good understanding of Parkinson's, yet cuts to healthcare resources and pressures on staffing present an ongoing threat to the quality of care provision in hospitals.

Further research is needed, particularly that which explores the patients experience. In the meantime, this study reinforces the need for supporting understanding of Parkinson's, alongside increasing awareness of the role of physiotherapy and how the multi-disciplinary team can better coordinate a clear direction of care for this patient group. Specifically, we see weighting given to the value of advanced care planning and maintaining mobility. I hope that through encouraging discussion and enquiry this study will form a cog in the wheel which is helping to drive forwards the improvement of care for people affected by Parkinson's. 

Acting on research opportunities

Although it has taken a lot of time and work to carry out this research, I'm so glad that I did it. I've been able to raise awareness of an important aspect of care as well as highlight the valuable contribution that my profession makes to that care. 

I have been privileged to meet some wonderful people through the research experience who have encouraged and supported me and I'd like to thank them for this as well as to encourage other professionals who can see research is needed in an area, to act on it and take that forward.

You can find more information on how you can be supported to conduct Parkinson's research in your area of expertise here.

Nikki Walker is Clinical lead physiotherapist for AMU, Norfolk and Norwich University Hospital NHS Foundation Trust.