Negotiations about helpfulness--the relationship between formal and informal care in home care arrangements

Informal caregiving by family members is the most common way of caring for sick people at home. However, the number of care arrangements, in which both formal (nurses) and informal (family members) caregivers are involved, is considerable and increasing. Despite implicit assumptions in research that the involvement of nurses in home care arrangements is inherently beneficial, there is evidence that their involvement may have a destabilising effect.

The purpose of this study was to investigate the relationship between nurses and family caregivers and its impact on the actual care that is provided.

Eighty-eight interviews with family caregivers (n = 57) and nurses (n = 31) were conducted in Germany and analysed according to the Grounded Theory methodology.

The relationship between formal and informal care is an encounter of two quite different perspectives that is focused on a negotiation process about caregiving work and the helpfulness of the actions taken and the interventions used. For family caregivers, it is determined by the goal of facilitating work and care for their sick family member. The nurses' work is characterised by a process of shaping different realities in different homes. The results reveal the processes that lead to the involvement of nurses into home care arrangements and offer a deeper understanding of the negotiation processes between formal and informal caregivers.

To provide sufficient support in home care, nurses need the ability to engage in negotiation processes that take the whole home care arrangement into account. Developmental work is needed to design services that are helpful for family caregivers.