Autonomy level and quality of everyday experience of people with Hereditary Spastic Paraplegia

Raffaela D.G. Sartori, Marco Marelli, Maria Grazia D'Angelo, Antonella Delle Fave

Research output: Contribution to journalArticle

Abstract

In the health domain, well-being is primarily assessed as autonomy and mental distress, whereas the quality of daily experience is rarely investigated. In this study, the relationship between autonomy levels and daily experience was explored. Thirty-five Italian adults with Hereditary Spastic Paraplegia provided for one week real-time descriptions of daily activities and associated experiences through the Experience Sampling Method procedure. Participants were grouped based on autonomy levels assessed through Barthel Index. The relationships between activity typologies, the experiential dimensions, perceived challenges and skills, and autonomy level were analysed. Participants’ predominant activities were personal care, associated with global disengagement, and leisure, associated with high control and desirability, but low perceived relevance. During social interactions participants reported engagement and emotional well-being, and during productive activities high activation but negative affect. Multi-level analysis highlighted that this association between activity type and experiential patterns recurred across autonomy levels. In addition, perceived challenges in the activity were lower that perceived personal skills across activities and autonomy levels. Findings suggest that persons with motor disabilities, regardless of their autonomy level, would benefit from more challenging opportunities for action in daily life, in order to attain well-being through active skill mobilisation.

Original languageEnglish
Pages (from-to)e850-e860
Number of pages11
JournalHealth and Social Care in the Community
Volume27
Issue number5
DOIs
Publication statusPublished - Jan 1 2019

Keywords

  • experience sampling method
  • hereditary spastic paraplegia
  • neuromuscular diseases
  • quality of experience

ASJC Scopus subject areas

  • Social Sciences (miscellaneous)
  • Sociology and Political Science
  • Health Policy
  • Public Health, Environmental and Occupational Health

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