Polio - The Late Effects Reality

METHODOLOGY

The results of this survey needed to be as accurate and as qualitatively thorough as possible to give the best possible chance for accurate forecasting of the future needs of the Post Polio Support Group membership. Therefore the survey was conducted through the medium of a respondent completed questionnaire, followed up by a further interview and questionnaire completed by a qualified Occupational Therapist (OT) in the respondent’s home. (It was found, at both pilot stage and survey commencement, that difficulty was experienced in securing the services of suitable and available Occupational Therapists to assist. This was particularly so in the Dublin area.)

Additional information to that on the survey forms was gathered by the Occupational Therapists whilst conducting the interviews, and this is mostly reported in the section dealing with Additional Information. This added a further useful dimension to the more formal and quantitative information collected from the questionnaires.

The Client Group

The Polio Survivor membership of the Post Polio Support Group (Post Polio Support Group) at the time of the survey (2002) in the Republic was 390 – around 5% of the total estimated Polio Survivor population. In August 2003 it stands at over 450. Many more survivors, who are not members, are in regular contact for information, and the Post Polio Support Group has members living in Northern Ireland and overseas.

Polio Survivors live in the community at large and have integrated well into society. Many have achieved success and distinction in their chosen professions and vocations, despite a disability left from the disease, generally contracted in their childhood. The energy and vigour to which many survivors go about achieving their goals is impressive. For some, there is now a fear that LEP will rob them of that hard-earned independence they gained initially.

This had consequences for the successful identification of the Respondent Group and for this survey specifically. For example, survivors currently experiencing a series of new symptoms – muscle pain, fatigue, tiredness, increased susceptibility to cold – may be misdiagnosed, particularly if they have not registered their Polio status with their General Practitioner (GP).

Also, survivors who are continuing with "life as usual" are not likely to welcome the news that LEP symptoms may be possible at some time in the future. Therefore, they may be unwilling to be identified as a Polio Survivor.

These factors, along with the fact that many GP’s are unaware of LEP, emigration and immigration of Polio Survivors, reluctance to volunteer health information, and poor post-war records, mean that a complete population count of Polio Survivors will always be extremely difficult. The Irish survivor population, mentioned in the introduction, was determined for the Post Polio Support Group with the assistance of a Trinity College Dublin statistician using death rate figures, an internationally accepted methodology.