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

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.

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

“…Persons living with late effects of polio are experienced in using coping strategies (Atwal et al, 2014;Hollingsworth, Didelot, & Levington, 2002;Wenneberg & Ahlstrom, 2000), which 16 have been described in relation to daily activities (Thorén Jönsson, Möller, & Grimby, 1998) but not specifically in relation to PA. Adaptation processes in relation to PA and increasing impairments have, however, been described for older adults in general (Janssen & Stube, 2014).…”

“…Childhood experiences affect PA depending on the nature of the experiences; positive experiences have a positive impact as described above, whereas negative experiences, i.e., discomfort and lack of meaningfulness impact negatively (Sandstrom, Samuelsson, & Oberg, 2009;Schutzer & Graves, 2004). Their childhood experiences and their disability have affected their personality which is often characterized by overachievement and a strong will to fit in, commonly described as a "polio personality" (Atwal et al, 2014;Thoren-Jonsson & Grimby, 2001). …”

Development of a patient‐centred conceptual framework of health‐related quality of life in neuromyelitis optica: a qualitative study

“…As such, at a conceptual level HRQoL in NMO hinges around broader concepts of life attainments and activities. In this respect there are conceptual links with Atwal et al . who found that QoL in post‐polio syndrome (a disabling muscular condition developed after an acute attack of polio), was related to ‘happiness’ (defined as enjoyment, satisfaction and excellence).…”

“…The severity of symptoms, combined with the varied and unpredictable nature of the condition, has a significant impact on individuals' daily lives that can contribute to psychological difficulties in adjusting to life with this condition . However, as with other neurological conditions, research into lived experience and quality of life (QoL) in NMO has come secondary to investigations of health status, limiting the ability of health‐care professionals to prioritize and influence well‐being in daily living and to evaluate treatment effectiveness from a patient perspective . As the need to engage people with neurological conditions in complex and subjective medical and health‐care decisions increases with the development of new treatments, now is a crucial time to expand knowledge on how they define their QoL.…”

Eudemonic Care: A Future Path for Occupational Therapy?

“…In a study aimed at understanding the meaning of quality of life for polio survivors, it was found that the participants used terms to describe quality of life that could be associated with happiness (Atwal et al, 2014 (Atwal et al, 2014).…”