Living with polio and postpolio syndrome in the United Kingdom

Abstract

Scand J Caring Sci; 2013; 27; 238–245 Living with polio and postpolio syndrome in the United Kingdom The term Postpolio Syndrome (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life in polio survivors. Polio had been eradicated in the United Kingdom (UK) and most of Europe, although this is not the case in all countries. Research in this area has tended to focus upon the impact of polio and PPS on health status and functional health rather than its overall effect on people’s lives. This study’s two main aims were to explore the ways in which polio and PPS in the UK has affected the respondents’ lives and to ascertain their views about how the quality of life could be improved. The two questions were as follows: (1) How has the health of people with polio and PPS affected their quality of life? (2) What would people with polio and PPS change to improve their quality of life? Deductive content analysis using existing qualitative data from a cross‐sectional survey of 336 returned questionnaires from persons with polio and PPS was carried out. The average age of the participants was 54 years. Our research found that polio survivors valued social occupations and participation in family life. Our research has also shown that healthcare professionals still do not understand polio and PPS and this lack of understanding influences their clients’ quality of life. Finances and accessibility of environments also influence participation in chosen occupations. Rehabilitation programmes for people with polio and PPS need to be targeted towards maintaining and improving accessible environments and participation in chosen occupations, and healthcare professionals need to ensure that persons with polio and PPS are referred to persons with specific expertise in this area.

Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities

“…This in turn could result in polio survivors not having ‘equal access’. Inaccessible built environments impacted on polio survivors’ participation in participation in activities such as work and autonomy outdoors and participation in chosen social activities . Issues with transport have also been previously noted by Burger and Marinček and Atwal et al …”

“…No further information is given about the validity and reliability of the tool. Two other studies used a non‐standardized survey . Atwal et al .…”

“…Two other studies used a non‐standardized survey . Atwal et al . analysed two qualitative questions from the survey, whereas Jacob and Shapira's responses were focused exclusively on activities that had been pre‐selected.…”

“…analysed two qualitative questions from the survey, whereas Jacob and Shapira's responses were focused exclusively on activities that had been pre‐selected. Two studies used the Swedish Health‐Related QOL Questionnaire (SWED‐QUAL) which is based on selected measures and consists of 61 items that form 11 multi‐item scales that are aspects of physical, mental, social and general health.…”

The Perception of Physical Activity in Ambulatory Persons with Late Effects of Polio: A Qualitative Study

“…However, for persons with late effects of polio it is essential to find a balance and to plan ahead, as too much PA could impact on specific impairments (Willen & Grimby, 1998). It is therefore important to prioritize and plan carefully, which may result in a loss of spontaneity (Atwal, Giles, Spiliotopoulou, Plastow, & Wilson, 2013). This needs to be taken into consideration by health care professionals when giving advice to persons with late effects of polio regarding PA.…”