and how we can help
Health care in many places hasn’t moved an awful lot from a ‘patch ’em up and send ’em out’ mentality. This is a great approach if you’re basically healthy, have acute appendicitis, and a quick recovery. It’s not so good if you have chronic pain, are having to learn to live with it, and find your general coping is compromised.
Most of our health care training, however, is designed to follow the medical model (despite arguments that occupational therapists, for example, are trained in a biopsychosocial model – just watch what happens when a referral for therapy is received without a diagnosis!). There is nothing fundamentally wrong with the medical model when it’s being used in the right place – it’s simply inadequate when the health problem can’t be ‘fixed’. And the problem with our health care training is that it’s focused primarily on ‘diagnosing’ deficits, patching them up (or compensating for them) and hoping the person will get on with it.
We also need to remember that not every person we see is quite ready to become their own healthcare expert. There is probably a point at which the person needs to be introduced to the idea, especially with an acquired health problem like chronic pain, that only they can really know what does and doesn’t suit them for their health management. Dealing with resistance to the move from being advised what to do to deciding what to do is also part of the process.
How can we help?
Firstly we can recognise the work of managing an ongoing health condition:
There is direct illness related work
– Identifying providers, going to appointments, the medication regimen, the treatment regimen, the rehabilitation program
There is indirect illness related work
– Insurance claims, funding issues, transportation, advocacy and communication, researching treatment options
There is the personal work of
– reconstructing self identity
– accommodating to change
And finally there is everyday life work
– Additional time required for ADLs, developing work/school options, keeping up, covering up, pacing – oh and fun!
We need to recognize who the health care workers really are – patients and their families. We need to acknowledge, train and support them. We especially need to recognize individual’s strengths and resilience.
Self management is both a philosophy and a tool – it recognizes patients and families must be active managers of their health care (so they may not ‘do as they’re told!’). We as clinicians need to see that individuals bring strengths and resource to their consultations. Self management asks us to play a different role – we need to be teachers and consultants. It also recognizes individuals may have different goals and that health enhancement, or getting on with the business of life is as important as symptom relief.
Four main ingredients in self management:
- Knowledge of the condition and health care resources
- Problem solving ability or training
- Skill acquisition
What roles can you play in helping people develop skill and confidence in these areas?
What makes people effective at self management?
- Recognize that health is your responsibility – your life, your health, your choice, your outcomes
- Get education & training
- Set short and long term goals within your health care problem and in the rest of your life
- Recognize strengths and abilities
- Develop a support system
- Advocate for self and others – be effective at communicating (both listening and expressing)
- Have a purpose beyond ‘managing the symptoms’
So, what roles can you play in helping people develop skill and confidence in these areas?
We can help people become their own healthcare experts by suggesting:
- Prepare for health visits, know what you want, get routine tests ahead of time so visits can devoted to discussing results
- Focus on key issues, write out questions in advance
- Develop a plan for your health – know when you need tests, reviews and support
- Develop a team and a system for records–timeline, providers, symptoms, medications
- Teach your healthcare team about how to your supporters
What do we as clinicians need to do?
- Respect the work done by persons with chronic conditions
- Acknowledge patients and families as team members and leaders
- Recognize individual’s strengths and resources
- Structure a consultative relationship
- Focus on the goals of patients and families
- Adopt a health enhancement model of care
- Provide opportunity for training/education
- Remember that this person may be one of many patients, but it is this person’s only life
Much of this post is abridged from a presentation by Stephen T. Wegener, PhD Department of Physical Medicine and Rehabilitation Johns Hopkins School of Medicine, 2004.
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