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

Anita Atwal,Nicole Smith,Caroline Quirke,Zeina Osseiran,Caron Coleman,Kate Harding,Nicola Plastow,Lesley Wilson,Georgia Spiliotopoulou

doi:10.1111/hex.12152

Abstract

IntroductionThe term ‘post‐polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.AimTo gain an in‐depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.MethodSix focus groups were conducted with 51 participants from two regions in England. Data were audio‐taped and analysed using thematic analysis.ResultsOur research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health‐care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.ConclusionIt is suggested that health‐care professionals should consider factors which influence happiness and implement a person‐centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health‐care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.

Highlights

The term ‘post-polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life
Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness
It is suggested that health-care professionals should consider factors which influence happiness and implement a personcentred approach with the views of the polio survivor being listened to

Summary

Introduction

The term ‘post-polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Despite its existence and availability, polio outbreaks are still experienced in many developing countries.[1] Whilst it has been eliminated in most European countries, people with polio are experiencing a new range of symptoms 40–60 years after recovering from paralytic polio. This condition is known as post-polio syndrome (PPS). The aetiology for the development of PPS is not clearly known or even fully accepted but the symptoms of PPS include joint and muscle pain, new muscle atrophy, increased muscular fatigability, general fatigue, cold intolerance and bulbar symptoms.[2,3] polio survivors can feel that they have been disabled for the second time.[4]

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