"They must get to know the individual very well": relationship-building of family and volunteer supporters in supported decision-making schemes.

ABSTRACT

PURPOSE: Supported decision-making (SDM) is an emerging and innovative alternative to substitute decision-making practices. While relationships are pivotal in establishing proper and effective SDM, scant research has examined these relationships in-depth. This study explores how decision-making supporters perceive relationships embedded in SDM for adults with disabilities. Furthermore, it compares the points of view of family and volunteer supporters on these relationships. MATERIALS AND METHODS: Using a semi-structured interview guide, in-depth interviews were held with 16 family and 16 volunteer supporters of Israeli decision-makers with disabilities. RESULTS: Both family and volunteer supporters addressed the centrality of the support relationship. However, they differed in their perspectives on the ways such relationships should be formed and on their boundaries. We distinguish between families' continuing relationships vs. volunteers' emerging relationships to emphasize the identified differences. CONCLUSIONS: The findings highlighted the importance of relationships to SDM processes, highlighting the need to examine in greater depth whether and how "typical" family relationships differ from SDM relationships. Based on these findings, we recommend training and guidance for both family and volunteer supporters in developing and strengthening these relationships.

Supported decision-making enhances quality of life as it helps persons with disabilities make and implement decisions.With proper supported decision-making, people with disabilities feel their wishes are recognized and respected.Focus on and awareness of relationship building is crucial and thus its various dimensions should explicitly be incorporated in any training program or policy for supported decision-makersGiven adequate training, both family and volunteers can develop positive relationships in supported decision-making schemes.