Professor Kenneth Pakenham’s research is inspired by the ongoing resilience of those with debilitating illnesses. A leading researcher and clinical psychologist in UQ’s School of Psychology, his work with mindfulness techniques is targeted at bettering the quality of life of those suffering Multiple Sclerosis (MS).
Professor Pakenham’s initial motivations to investigate and improve the quality of life of those suffering chronic illness were personal.
In 1993 he was diagnosed with suspected MS – a condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves. It affects more than 23,000 people in Australia, with more than two million diagnoses worldwide.
“I had lots of severe neurological symptoms: I couldn’t use a keyboard, I had altered sensation in terms of touch. It was unclear where that uncertain diagnosis would lead,” he explains.
As a career academic, Professor Pakenham’s first reaction was to turn to research.
“Researching the literature on the psychosocial aspects of MS at that time, I found the predominant focus was on associations between psychopathology and the illness. There was very little by way of a positive approach to understanding the psychological aspects of MS.”
To meet Professor Pakenham is to see his unwaveringly positive approach to life – be that his research, his clients, his research volunteers or his students. For him, it stems from documented principles of psychology coupled with the inspiration drawn from significant personal experiences.
“I committed to a value of vigorously extracting every drop of life from adversity that came my way. My initial MS research was conducted around the time of my suspected MS diagnosis, and I have continued it for the past 25 years, despite resolution of my initial neurological symptoms and not receiving an MS diagnosis.”
Rather than shying away from momentously negative experiences, such as the potential of a life-changing diagnosis, Professor Pakenham’s personal methodology and professional outlook became informed by a growing area of psychology: mindfulness.
“Mindfulness involves bringing your attention to the present, including internal experiences such as thoughts and sensations, and the external environment.
“Attending to what is in the present means you have to face life honestly without pretence or avoidance – it involves a naked vulnerability.
“If discomfort, such as fear or sadness, shows up in the present, then opening up to it can be challenging; but that’s what mindfulness requires – to show up, be open and be honest to whatever is in the present.”
Expanding on existing research within the MS field – and the chronic illness field more generally – it was Professor Pakenham’s aim to show that a brief, accessible mindfulness program could be flexibly delivered via a community organisation and offer its members benefits with respect to quality of life and enhanced living.
Most mindfulness programs had previously been offered through hospitals and clinics, generally hosted over an eight-week period. As Professor Pakenham is quick to point out, MS is associated with severe fatigue and fluctuations in disability, making attendance at such programs taxing. The aim was therefore to provide a program that was brief, easily accessible and provided through an established organisation with existing delivery channels, such as MS Queensland.
As such, two standardised mindfulness programs were integrated and adjusted to meet these needs, offering a simple approach with impressive outcomes.
Professor Pakenham and Master of Clinical Psychology student Elizabeth Spitzer initially delivered the program to two groups of 23 people with MS, evaluating at the beginning and end of the program, with a follow-up evaluation taking place eight weeks after the program had concluded.
The results of the pilot study showed that significant improvements were maintained at the follow-up stage with regards to mental health, quality of life, depression, symptoms of stress (including perceived stress), mindfulness skills, self-compassion and acceptance (psychological flexibility).
In addition to this, qualitative data were gathered on participants’ perceptions of the program – unanimously the participants found it helpful, and feedback indicated they were able to better manage their difficult thoughts and emotions after having undergone the program.
Successful engagement in the program was reflected in retention rates, with no participants dropping out of the study, and all reporting that they would recommend mindfulness to others with MS.
The team, including clinical psychology students in training, continue to work alongside MS Queensland to deliver the program in the south-east corner of the state, with delivery to regional and remote areas facilitated by psychologists in private practice within their respective communities. Professor Pakenham’s team provides the manualised program and workbooks, and in return the psychologists assist to evaluate the program.
Clinical neuropyschology doctoral student Maddison Campbell is evaluating the Mindfulness for MS Program longitudinally, studying the effects on quality of life, distress and fatigue, and cognitive funcition.
To date more than 200 people with MS have attend over 15 programs throughout Queensland.
The program is now being considered in other regions (ACT, NSW, Victoria and Tasmania), and has been translated into Italian with evaluation in Italy to commence shortly.
Professor Pakenham remains optimistic when considering the future of the study. He hopes carers can be trained in the mindfulness techniques, and that the program can be tailored to groups with varying neurological disorders, such as Parkinson’s disease.
“My ultimate goal is to see greater access across the board with the research outcomes propelling wider dissemination of mindfulness programs, including those on an international stage.”
Professor Kenneth Pakenham’s dedication and devotion was recognised in the 2016 Australian Awards for University Teaching. Professor Pakenham received a Citation for Outstanding Contributions to Student Learning for 'Caring for Self to Care for Others': scholarly leadership in integrating self-care into a psychotherapy curriculum that builds resilient clinicians able to relieve human suffering.
The Mindfulness for MS Program received a UQ Partners in Research Excellence Award (2016) for the productive partnership with MS Queensland in the development, implementation and evaluation of the program.
Words: Alice Graham
Photos: Anjanette Webb
