Involving the social network in the rehabilitation of people with long-term conditions requires great care
5 December 2022
A family-centred approach has been developed for the rehabilitation of people with long-term physical conditions. But to know whether this approach makes sense, you need more insight into the real needs of people with disabilities and their loved ones, Chantal Hillebregt discovered. They often appear reluctant to ask their social network for (more) support. On 5 December 2022, she defended her thesis 'Let us be': Social support needs of people with acquired long-term disabilities and their caregivers in rehabilitation practice in the Netherlands at the University of Humanistic Studies.
Dutch care policies increasingly focus on using the social network (family members, neighbours and friends) to organise social support for vulnerable people. One such method that fits within this policy is called 'family group decision making'. This method places the social network in a central role in making a support plan, in consultation with the vulnerable person in question and his/her neighbour(s).
The method of 'family group decision making' was first used in rehabilitation with people with severe long-term conditions, such as non-congenital brain injury or spinal cord injury, together with their relatives. They often spend weeks or months in a rehabilitation centre for therapy. Upon discharge home, they and their loved ones, often still experience a large gap between the protected clinical environment and functioning at home again. They feel inadequately prepared for daily life and participation in society.
Chantal Hillebregt started her research by asking how effective the implementation of 'family group decision making' is in rehabilitation practice. It was assumed that this method would lead to greater family involvement and thus contribute positively to the transition from clinic to home. But she found out that very few rehabilitants and their relatives participated in the method. People with disabilities or impairments and their relatives appeared very reluctant to ask their social network for (more) support.
She then explored the reasons for this reluctance to ask their network for help, and what this means for policy and practice. She found that people with long-term conditions and their loved ones differ greatly in their ability to activate their network. They also experience the degree of strain very differently depending on the rehabilitation phase, and their need for support from the social network varies.
Chantal Hillebregt: "A tailor-made rehabilitation approach that takes into account any reluctance to ask family and friends for help is therefore desirable. In doing so, it is important to raise awareness of people's real needs to get help from family and friends and whether or not this should be encouraged."
On 5 December 2022, Chantal Hillebregt defended her thesis 'Let us be', about social support needs of people with long-term disabilities and their caregivers.