Using skills and social interaction are key to well-being
Regardless of their autonomy level, people with HSP should be supported in finding more challenging opportunities for action in daily life in order to have more engaging and optimal experiences.
The exercise of motor functions and the cultivation of vicarious ones should be promoted through physiotherapy programs and physical activity.
Job placement should be favoured, as productive activities can foster engaging experiences, as well as represent opportunities for personal growth and social inclusion.
Social interactions should be facilitated through engagement in family and community activities.
This study of 35 people provides a better understanding of the daily experience of people with HSP. The knowledge gained from the results of the study can help identify unmet needs and resources and aid the design of personal strategies and plans to enhance well-being in daily life. The authors recommend a larger study to lend confidence to the results obtained and conclusions drawn.
Tailoring rehabilitation programs
The importance of tailoring rehabilitation programs based on individuals’ perceived challenges and abilities is highlighted. Tailored programs can foster active engagement in tasks that represent opportunities for both skill improvement and socialisation. This promotes complex and positive experiences such as ‘flow’ and can lead to high performance, intrinsic rewards and the long‐term development of competencies and autonomy.
The interaction between perceived challenges and personal skills is a key determinant of the quality of experience of daily life. Surprisingly, the level of an individual’s autonomy had only a modest impact on the quality of experience of daily activities. The level of complexity and structure of daily activities are good predictors of the quality of experience of those activities.
Daily life mainly low challenge
The reality however is that the daily life of study participants mainly includes unstructured, passive and low‐challenge tasks, and that presents risks for both their physical and mental health.
The most frequently reported activities were leisure and personal care. Leisure predominantly included passive and sedentary activities, such as watching TV and playing video games. Personal care activities mostly comprised daily hygiene, eating and resting.
The value of work
During productive tasks, such as work, participants perceived average challenge and skill levels, they were more active than average, but less happy and less willing to do the task. Productive tasks support activation and focused attention, but not emotional and motivational involvement.
Work represents an important opportunity for cognitive and behavioral resource mobilisation, and for ‘flow’ experiences.
Moreover, it promotes socialisation and experience in the daily environment, and on participants’ perception of daily activities as opportunities for positive social engagement and optimal experiences. Results showed that the main predictor of participants’ experience were the perceived relevance and complexity of the ongoing activity, whereas the autonomy level played only a marginal role.
Sports, physical exercise, arts and crafts
Structured and challenging activities such as sports, physical exercise, arts and crafts allow people with disabilities to experience ‘flow’, and at the same time to preserve functional autonomy, build new abilities or develop residual ones, and cultivate relationships.
Relationships play a vital role in fostering perceived meaning in life and in supporting adaptive coping strategies that can enhance well-being.
Challenge should fit level of autonomy
High autonomy participants more effectively express and mobilise competencies, especially in complex and refined tasks.
Among medium autonomy participants, there was a significant increase in challenges to skills during social interactions, likely related to the need for other people’s help to perform daily tasks while simultaneously being sufficiently independent to actively search for social interactions to strengthen existing relationships as well as building new ones.
Finally, among low autonomy participants, perceived challenges hit the highest level in productive activities, often performed in a day‐care centre, suggesting a dual role of these activities as opportunities for active engagement and social participation outside domestic settings.
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 the 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 than 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.
SOURCE: Health Soc Care Community. 2019 Sep;27(5):e850-e860. doi: 10.1111/hsc.12812. Epub 2019 Jul 17. © 2019 John Wiley & Sons Ltd. PMID: 31313875
Autonomy level and quality of everyday experience of people with Hereditary Spastic Paraplegia.
1 Department of Biomedical and Clinical Sciences “Luigi Sacco”, Università degli Studi di Milano, Milano, Italy.
2 Department of Psychology, University of Milano-Bicocca, Milano, Italy.
3 Scientific Institute, IRCCS E. Medea, NeuroMuscular Unit, Bosisio Parini, Lecco, Italy.
4 Department of Pathophysiology and Transplantation, University of Milano, Milano, Italy.
5 Scientific Institute, IRCCS E. Medea, Bosisio Parini, Lecco, Italy.