Swallowing changes in people with Parkinson's in Saudi Arabia : perceptions and practices

Abstract

The aim of this research was to explore the experience of swallowing changes in people with Parkinson’s (PwP) in Saudi Arabia and their impact on both PwP and their families. The impact of eating and drinking changes in neurological conditions has not been thoroughly studied and the influence of culture on how people deal and cope with swallowing changes also has been neglected. There are very few studies on Parkinson’s carried out in Saudi Arabia and none have looked at the impact of these changes on both the PwP and their families. This is a qualitative study, using semi-structured interviews with 39 participants PwP and their carers and a focus group with three speech and language therapists. The interviews and focus group were transcribed verbatim, translated into English and were analysed using thematic analysis. The main themes categories that emerged are ‘the whole meal is awkward’, ‘we all have Parkinson’s’ and ‘I leave it all to Allah’. There was a close link between cultural context and how eating and drinking changes manifested and impacted on individuals and families. The role of the older person in Saudi culture during meals as well as gender roles within a Saudi family strongly influenced how PwP felt about their restricted eating abilities. The influence of Islamic beliefs was apparent in both the PwP and the caregivers’ interviews. It shaped how they dealt with Parkinson’s, how they interpreted symptoms and change, their views on rehabilitation and their willingness to discuss the impact of changes with the interviewer. This study highlights how Saudi Arabian society has traditional mealtime customs for families and for older people in particular. Eating and drinking changes due to Parkinson’s challenge and restrict these customs. An understanding of these socio-cultural factors is necessary to appreciate how the impact of eating and drinking changes in Saudi Arabia differs from impacts reported for European and North American populations and the different implications this holds for rehabilitation of PwP. Speech and language therapists as well as other healthcare workers need to be aware of the cultural background of the person with Parkinson’s when assessing their eating and drinking abilities. Considerations have to be made when recommending treatment plans or eating modifications.