55 Rehabilitants and informal caregivers’ perspectives of a Challenging Rehabilitation Environment Table 2. Themes involving rehabilitation process (continued) Main theme Brief description Sub-theme Description Informal caregivers Informal caregivers should be involved in the rehabilitation process with attention to their resilience and the relation between the rehabilitant and informal caregiver. Informal caregiver participation Informal caregiver participation can have a beneficial effect because caregivers learn what to do at home. But it can also be inhibiting if the caregiver does not trust the rehabilitant. Attention to the resilience of the caregiver is important, and they must be continuously involved in the rehabilitation process. Informal caregivers value doing extra exercises with the rehabilitant and, if needed, are part of the conversation regarding the rehabilitation process. Dynamic between rehabilitant and informal caregiver The role of the caregiver during rehabilitation can depend on the relationship with the rehabilitant. A partner may have a more natural role than another informal caregiver, such as a child. Caregivers consider it quite normal to do extra things for their spouse. However, it is important that the relationship does not become a care-relationship only. Communication Communication is important for aligning the rehabilitation process between all involved in the process. Adequate communication is important for building a treatment relationship, providing mutually relevant information about the disease, aligning goals, communicating exercise options, preparation of the discharge process and the coping process. Participants value reading the reports and the goals in the patient files. Special attention is needed if the rehabilitant cannot oversee his rehabilitation process, for instance due to cognitive impairment, or if the caregiver is unable to come to the ward due to circumstances like COVID-19. Repeating the information is an important aspect. 3
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