Burden of support: a counter narrative of service users’ experiences with community housing services

Community housing services adopt care models such as rehabilitation, recovery-oriented care and person-centered planning to improve the quality of life of service users with an intellectual or psychiatric disability. However, the way these care models are implemented and practiced can negatively impact service users’ experience with the service as their complex needs go unmet. In this paper, we conceptualize these experiences through developing the counternarrative of burdens of support. For this we draw on burden of treatment theory. We conducted ethnographic fieldwork in a community service organization in the Netherlands. This included participant observation (84 h), interviews with service users (n = 20), experts-by-experience (n = 8), family members (n = 10) and photovoice workshops. Our analysis identifies four burdens of support: burden of self-determination; re-identification; responsibilisation and re-placement. The results show that burden of support is very much a relational concept: through their support, professionals can aggravate or alleviate burden. Points of interest People with intellectual or psychiatric disabilities often receive support with living in the community. Good support fits people’s needs (e.g. person-centered planning), builds on people’s strengths and contributes to recovery and community participation. Even when support is practiced or organized with such aims, service users can have negative experiences. In this research we call this: ‘burden of support’. Examples of burden of support identified include: Clients’ needs and wishes are sometimes not sufficiently attended too when working with a personal care plan. Too much responsibility is sometimes shifted to clients, which results in feelings of failing or abandonment. The focus on strengths and recovery sometimes leaves too little room for clients to voice support needs. Having to move to a different home or neighborhood as part of becoming more independent can result in many difficulties including loneliness. The research recommended that those who improve services should also alleviate these burdens