Table 3 Family members’ and informal caregivers’ role adjustment

Evolving roles

• Have to evaluate their needs and decide referring to multiple expectations whether to assume the caregiver’s role or not. The decision depends on social claim, life roles and gender expectations [24, 25] as well as spiritual, social and moral obligations [32].

• Experience changing roles inside the family and take over multiple roles [32].

• Have to meet expectations which is a central challenge [25].

• Are confronted with new tasks and find themselves in a changed life situation [26].

• Have to deal with an increasing workload because of previous tasks extended through new tasks like accompanying, supporting and caring for persons with palliative care needs [26] as well as to coordinate with health care professionals [25].

• Have to negotiate boundaries between family and professional caregivers [25].

Re-prioritizing roles

• Have little scope in decision-making as it is expected to prioritize the caring role more than e.g. the employee role [25].

• Missing other options as the willingness to care diminishes other opportunities [28].

• Care as commitment for their family members [32].

• State that it is self-evident and natural to care for a family member [24].

• Re-prioritize values and expectations in the family [25].

• Do not watch their own health out of a sense of duty wherefore own needs are postponed and the concerned persons’ needs are put before their own [24, 28, 32].

• Describe the phenomenon as: “We just do what we have to do, and get through it”; which is combined with strategies as to accept the situation and not to give up [27].

Balancing roles

• Hope that “they would be able to handle whatever the future would bring and to do a ‘good job’ of caregiving without giving up […]” [27].

• Experience emotions as pendulum-like, a reciprocity between the need to care and to fulfil expectations at the same moment from persons with palliative care needs, health care professionals, society and their own.

• Try to “hang on” to provided expectations and deal with the increasing interdependency [24, 25, 28].