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Post-Polio Health (ISSN 1066-5331)

Vol. 17, No. 3, Summer 2001

Post-Polio Resources

Self-Management of Chronic Conditions
Peter Jay, The British Polio Fellowship

Presented at the
Eighth International Post-Polio & Independent Living Conference
Saint Louis, Missouri, June 2000

Overview of Self-Management

Both at home and in the business world managers direct the show. They do not do everything themselves; they work with others, including consultants, to get the job done. What makes them managers is that they are responsible for making the decisions and making sure these decisions are carried out.

As a manager of your condition, your job is much the same. You gather information and hire a consultant, or a team of consultants consisting of your physician/GP and other health professionals. Once they have given you their best advice, it is up to you to follow through. All chronic conditions need day-to-day management. We have all noticed that some people with severe physical problems get on well while others with lesser problems seem to give up on life. The difference is often management style.

Managing a chronic condition, like managing a family or a business, is a complex undertaking. There are many twists, turns and mid-course corrections. By learning self-management skills you can ease the problems of living with your condition.

The key to success in any undertaking is first deciding what you want to do, second, deciding how you are going to do it, and finally, learning a set of skills and practicing them until they have been mastered. In fact, mastering such skills is one of the most important tasks of later life.

During the Chronic Disease Self-Management Program (CDSMP), we describe hundreds of skills and strategies to help relieve the problems caused by chronic illness. We do not expect the participants to do all of them. They pick and choose. Experiment. Set their own goals. What they do may not be as important as the sense of confidence and control that comes from successfully doing something they want to do. However, we have learned that knowing skills is not enough. People need ways of incorporating these skills into their daily lives.

The unique self-management course is led by people living with long-term conditions, and utilizes group intervention. The focus is about sharing self-management techniques and not information giving. The course is a generic one working across conditions and is based upon the principle of "can do."

More about the course ... There are six 2-1/2 hour sessions designed to help people take control of their illness by learning how to effectively manage symptoms – challenging the frustration, pain and fatigue. Some of the topics covered are relaxation, anger, fear and frustration, fitness and exercise, better breathing, nutrition, medication and making treatment decisions.

Some traditional self-help groups provide participants with information but not with motivation. Whereas this course empowers people encouraging them to make small steps towards a long-term goal. Each week every participant sets an action plan to achieve a reasonable goal before the next session. The main goal is to achieve our greatest capability or attain optimum health.

The course also differs from other self-help groups in that the courses are focused and heavily structured. This course has a start point and end point.

As survivors, we should accept a certain amount of responsibility for our own health. After all, we know our own bodies better than anyone. We need to be aware of our bodies without becoming obsessed with them.

For more information, contact Peter Jay, The Nest, Kings Street, Sutton Bridge, Spalding,
Lincolnshire PE12 9RB, United Kingdom (+44 1406-365407).

The Chronic Disease Self-Management Program was originally developed at Stanford University.
To find courses in the United States, log onto www.stanford.edu/group/perc/cdsmp.html.


Wellness for Women with Polio: A Holistic Program Model
(A Report of Initial Findings)

Sunny Roller, MA, Martin Forchheimer, MPP, Denise G. Tate, PhD,
Ricardo Rodriguez, MS, University of Michigan Health System, Ann Arbor, Michigan

Using the framework of a bio-psychosocial model of holistic health, this three-year project assessed needs, then developed, implemented and tested the effectiveness of a cognitive and experiential wellness program for women with polio.

Participants: Of the 189 who were selected to participate, 159 women completed the study. Eighty-five women were randomly self-selected to become experimental participants, with 74 self-selecting as control group members. All participants visited three assessment clinics: baseline, two weeks post-intervention and a final assessment six months later.

Demographics: The average age of the participants was 56 years. The average number of years the women had lived with polio was 48 with a mean age of polio onset at 7 years.

Their primary source of health care coverage was private insurance (80%). Other sources of health care coverage included Medicare (16%) and Medicaid (2%) with 2% of the total group reporting they had no health insurance coverage.

Thirty-six percent of the women were employed full-time. Sixteen percent reported working part-time and 12% reported working as full-time homemakers. Further, 1% was unemployed and looking for work and 16% were unable to work due to disability. Eight percent had retired from work.

The average body weight of participants was 170 lbs. with the average body mass index score at the obese level of 29.1. The most frequently reported physician-diagnosed secondary conditions at study baseline were: new weakness in previously involved muscles 39%, scoliosis 35%, anemia 33%, depression 33%, circulatory problems related to coldness in extremities 31% and chronic pain 30%.

The Program: Workshop teachers conducted a total of five wellness interventions. Each wellness workshop was composed of four half-day sessions. For participants, the workshop was followed two weeks later by a 30-minute, one-on-one, coaching/goal setting session conducted at the post-workshop clinical assessment time. At this coaching session, students met with three of their instructors for about ten minutes each to discuss individual issues and to plan for each of the major content areas.

Workshop content always included three topic areas: exercise, nutrition and stress management. This comprehensive and integrated, or "holistic," approach was developed on the premise that mind and body work together as one unit and that all three of these health promotion areas are interdependent and will contribute to a woman's overall state of wellness.

Results: Positive health behaviors increased as a result of the program. Fifty-nine percent of the program participants increased their physical activity during the six months following the program. From the program's onset until six months after its completion, the percentage of participants eating 2-3 servings of fruit or fruit juice per day increased from 58% to 73%. The percentage of program participants who said that they took time each day to relax increased from 56% to 74%.

Physical Change – No significant changes in blood pressure, cholesterol, weight, strength or flexibility in workshop group were found.

Psychological/Perceptual Change – No significant change or differences (participants vs. controls) in distress levels (which were within normal range) or global perceptions of quality of life were found in the workshop group.

The workshop participants' perception of exercise changed during the course of the study. The percentage of women that reported not getting enough exercise because they believed that exercise is bad for post-polio people was 12.5% in the control group's initial visit and 9.5% in their follow-up visit. Ten percent of the workshop participants reported this belief during the initial visit, dropping to 0% during the follow-up visit.

The percentage of women that reported not getting enough exercise because they were not sure which exercises are good for post-polio people was 50% in the control group's initial visit and 38% in the follow-up visit. Fifty-three percent of the workshop participants reported this belief during the initial visit, which dropped to 3.5% in their follow-up visit.

Sponsored by the National Center for Medical and Rehabilitation Research, Reference #:1 R01 HD35053 01.

For more information, contact Sunny Roller, MA, Physical Medicine & Rehabilitation, University of Michigan Health System, D4114 Medical Professional Building, Ann Arbor, MI (Michigan) 48109 (734-936-9474, 734-763-0574 fax, elsol@umich.edu).

In Queensland last year, a model for the management of Late Effects of Polio was approved – together with funding of $100,000 – to develop a resource package and undertake training and education of health professionals, and to promote greater awareness about their condition to those who have experienced polio.

The Late Effects of Polio Training Program involves prevention and management, and a program to develop strategies which can assist in decreasing the impact of individual symptoms on daily life.

It involves working with those affected by post-polio symptoms to improve their quality of life through a prescription of individual care, education, exercise, and lifestyle modification.

In addition to training workshops for rehabilitation health professionals across Queensland, the Late Effects of Polio project included the development of a resource manual for hospital and community health professionals on the assessment and management of late effects of polio; a GP information package; a brochure about "Understanding the Late Effects of Polio" to provide information to the general public regarding this condition; and the development of websites.

The entire education and training package is accessible on www.health.qld.gov.au/polio/gp/home.htm.

For more information, contact The Paraplegic and Quadriplegic Association of Queensland Inc., PO Box 5651, West End, Brisbane 4101, Australia (+61 7 3391 2044, www.pqaq.com.au).

The Queen Elizabeth Hospital (www.qehospital.co.nz), a private hospital in Rotorua, New Zealand, offers a Polio Course three times a year. The three-week course is covered by Public Health if a polio survivor's physician or specialist refers them. Survivors who are able to pay can make their own arrangements.

The course focuses on education, pain management, fitness, balneotherapy (because of access to geo-thermal waters), management of daily living activities, and improvement of mobility skills.

Doreen Chandler, Auckland Post-Polio Support Group, Inc., reports that polio survivors live in and the first week is dedicated to assessments. "The second and third weeks include treatment consisting of hydrotherapy, physiotherapy, exercise, orthotics and wheelchair services, and, if required, occupational therapy and counseling. I attended a course four years ago and was given an extra week of treatment."

For more information, contact Doreen Chandler, Auckland Post-Polio Support Group, Inc., 36 Eastern Beach Road, Bucklands Beach 1704, New Zealand (+64 9 534-6151, +64 9 537-3104 fax, auckpostpolio@clear.net.nz).

The Queen Elizabeth Hospital (www.qehospital.co.nz), a private hospital in Rotorua, New Zealand, offers a Polio Course three times a year. The three-week course is covered by Public Health if a polio survivor's physician or specialist refers them. Survivors who are able to pay can make their own arrangements.