'Let us be'. Social support needs of people with acquired long-term disabilities and their caregivers in...

In many European countries, including the Netherlands, current care policies encourage 'active citizens' to support each other rather than having individuals rely on paid professional help. Rehabilitation centres also put greater emphasis on social networks assisting adults with acquired long-term disabilities and their caregivers. Often these adults and their caregivers feel insufficiently prepared to cope with the disability in daily life and struggle with community integration. However, little is known about the factors that make vulnerable people accept or decline support from their social networks. We researched the social support needs of persons with acquired disabilities and their caregivers eligible for a family group conference intervention by conducting 19 semi-structured interviews in rehabilitation centres in the Netherlands. A thematic analysis revealed that most couples (15) were reluctant to request (more) support from their social network, even though many of them had a good network to rely on. We identified five reasons for this reluctance: (1) not accustomed asking support, (2) not wanting to be a (bigger) burden, (3) fear of intrusion into one's privacy and independence, (4) fear or problematic motivations such as curiosity or pity and (5) lack of reliability, competence, or comprehension. The main factor seemed to be the lack of reciprocity: couples do not see sufficient options to reciprocate the necessary support. Therefore, before instigating social support-centred interventions such as family group conferences, social care and other health professionals should be aware of any factors causing a sense of reluctance and explore the experiences of an imbalance in reciprocity.