How the personal support networks of people with intellectual disability promote participation and engagement

Kathy Shelley, Michelle Donelly, Anne Hillman, Angela Dew, Louise Whitaker, Roger J. Stancliffe, Marie Knox, Trevor Parmenter

Abstract


Background: Social inclusion has been defined as an interaction between major life domains, including interpersonal relationships and community participation among other factors. Understanding the manner in which these life domains may inter-connect could inform efforts to promote social inclusion. This paper explores the role of personal support network members in establishing and maintaining community participation of a person with an intellectual disability.

Method: An ethnographic research design allowed exploration of network interactions over a three-year period. In-depth interviews and participant observations were undertaken with nine people with an intellectual disability and their network members.

Results: The networks promoted participation using various strategies. The person and their network gathered and shared information to determine what was meaningful to the person. Information about success was used to adapt developing strategies, enhance support, and build on existing gains.

Conclusions: Personal networks provided insight into the practical and relational aspects of participation, and the importance of balancing risk and autonomy, vulnerability and freedom. Respect for the personhood, importance and dignity of each person at the centre of the network influenced this work.


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