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Abstract
Purpose: The purpose of the study was to explore how adolescents with disabilities experience everyday life with personal assistants. Method: In this qualitative study, individual interviews were conducted at 35 occasions with 16 Swedish adolescents with disabilities, in the ages 16–21. Data were analyzed using grounded theory methodology. Results: The adolescents' main concern was to achieve normality, which is about doing rather than being normal. They try to resolve this by assisted normality utilizing personal assistance. Assisted normality can be obtained by the existing relationship, the cooperation between the assistant and the adolescent and the situational placement of the assistant. Normality is obstructed by physical, social and psychological barriers. Conclusion: This study is from the adolescents’ perspective and has implications for understanding the value of having access to personal assistance in order to achieve assisted normality and enable social interaction in everyday life.
Access to personal assistance is important to enable social interaction in everyday life.
A good and functional relationship is enabled through the existing relation, co-operation and situational placement of the assistant.
If the assistant is not properly sensitized, young people risk turning into objects of care.
Access to personal assistants cannot compensate for disabling barriers in the society as for example lack of acceptance.
Implications for Rehabilitation
Acknowledgements
The authors would like to thank the participants who generously gave of their time and shared their experiences. We thank our colleagues in different research groups at Karolinska Institutet (the Division of Social Work and the network for Health Care Science Research). A special thank goes to Dr. Barney G. Glaser and participants at the Grounded Theory seminar held in Stockholm, Sweden, April, 2014. The study was financially supported by Eugenia- Norrbacka, Sunnerdahl handikappfond, Majblomman and RBU.
Declaration of interest
The authors report no declarations of interest.
Notes
1Throughout this article, “personal assistant” (PA) and “assistant” refer to people providing individualized support directed toward a specific person.