Reluctant participation – the experiences of adolescents with disabilities of meetings with social workers regarding their right to receive personal assistance

ABSTRACT

The aim of this study was to improve understanding of the experiences of adolescents with disabilities concerning meetings that affect their possibility to receive personal assistance in Sweden. Qualitative inductive content analysis was used to describe their experiences. Overall adolescents were found to be reluctant to participate in meetings. Two main approaches could be discerned – taking part and taking part by proxy. The adolescents who took part in meetings tried to adapt their self-presentation to fit with the social workers’ requirements by presenting their worst self, giving requested information, using support and raising their voices. The adolescents who choose to participate by proxy were either being involved or not being involved. Being involved implied involvement before and/or after the meeting. The meaning of participants’ strategies was examined through a social constructivist lens. The results indicate that ‘performing disability’ during the meetings is a prerequisite for obtaining personal assistance. In its current form adolescents’ participation is reduced to tokenism and this raises questions about how to implement a child perspective.

ABSTRAKT

Syftet med studien var att öka förståelsen av funktionshindrade ungdomars erfarenhet av möten som påverkar deras möjlighet att få personlig assistans i Sverige. Kvalitativ induktiv innehållsanalys användes för att analysera och beskriva deras erfarenheter. Studien visar att ungdomarnas deltagande i möten var motvilligt. Två huvudsakliga förhållningssätt kunde urskiljas – ungdomar som valde att personligen delta och deltagande via ombud. Ungdomarna som deltog i möten försökte anpassa sin självpresentation så att den passade in med LSS-handläggarnas krav genom att visa upp sin sämsta sida, lämna efterfrågad information, söka stöd och göra sin röst hörd. Ungdomarna som valde att delta genom ombud var antingen involverade eller inte involverade i mötena. Att vara involverad innebar medverkan före och/eller efter mötet. Betydelsen av ungdomarnas strategier undersöktes genom en socialkonstruktivistisk lins. Resultaten visar att i samband med mötet är uppvisandet av funktionshindret en förutsättning för att beviljas personlig assistans. I sin nuvarande form reduceras ungdomars deltagande till symboliskt och det väcker frågor kring hur ett barnperspektiv kan implementeras.

KEYWORDS:

• Disability
• personal assistance
• social constructivism
• participation
• adolescents
• social model of disability

HUVUDORD:

• Funktionshinder
• Personlig assistans
• Social konstruktivism
• Delaktighet
• Ungdomar
• “The social model of disability”

Acknowledgements

The authors would like to thank the participants who contributed their time and personal experiences. We are grateful to the staff at schools and user organisations for mediating contact with the adolescents. We thank our colleagues from different research groups at Karolinska Institutet (the division of social work and the network for health care science research).

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Lill Hultman PhD student has worked as a social worker in health and rehabilitation and as a social work lecturer at Karolinska Institutet, Sweden. She is now working on her doctoral thesis with the overall objective to investigate children’s and adolescents’ own perspectives on and experiences of living with personal assistance. It also includes social workers’ views of children’s and adolescents’ opportunities for participation in meetings concerning their abilities to receive personal assistance.

Pernilla Pergert has a PhD in paediatric science and is research leader of the ‘Childhood Cancer Health Care Research’ group at Karolinska Institutet, focusing mainly on intercultural care and clinical ethics. She also has a long experience of working in paediatric oncology as a paediatric nurse specialist at the Childhood Cancer Care Unit, Astrid Lindgren Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden.

Ulla Forinder has a PhD in Social Work. She is associate professor and working at the University of Gävle as a senior lecturer. Forinder is a licensed psychotherapist and has a long experience working in child psychiatry especially with seriously ill children and their families which also has been the main focus of her research

Additional information

Funding

This work was supported by Norrbacka-Eugenia Stiftelsen [grant numbers 2510/11 and 531/14], Sunnerdahl Handikappfond [grant number 18/12], RBU [grant number 2012-04-30] and a scholarship from Majblomman.