Purpose: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients’ discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. Methods: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. Results: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present (‘being there’) which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. Conclusions: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones’ wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.
Background and purpose: Many older patients with cancer have their family members, often their adult children, involved in a process of treatment decision making. Despite the growing awareness that family members can facilitate a process of shared decision making (SDM), literature about SDM pays little attention to family relations and strategies to facilitate family involvement in decision making processes. Therefor this study aimed to 1. explore surgeons' and nurses' perceptions about involvement of adult children in treatment decision-making for older patients; and 2. identify strategies surgeons' and nurses use to ensure positive family involvement. Methods: This study used a qualitative open in-depth interview design. Semi-structured interviews were conducted with 13 surgical oncologists and 13 oncology nurses in two hospitals in the Netherlands. Qualitative content analysis was conducted according to the steps of thematic analysis. Results: Surgeons and nurses indicated that adult children's involvement in decision-making increases when patients become frail. They reported beneficial and challenging characteristics of this involvement. Subsequently, six strategies to stimulate positive involvement of adult children in the decision-making process were revealed: 1. Focus on the patient; 2. Actively involve adult children; 3. Acknowledge different perspectives; 4. Get to know the family system; 5. Check that the patient and family members understand the information; and 6. Stimulate communication and deliberation with adult children.Conclusions and implications: Surgeons and nurses perceive involvement of adult children in treatment decision making for older patients with cancer as beneficial. Adult children can help these patients reach well-informed treatment decisions. Therefor surgeons and nurses stimulate the communication and deliberation between these patients and their adult children. However, involving family in treatment decision making also triggers specific complexities and challenges in treatment decision conversations that seem to call for the development and implementation of practical patient and family-centered strategies.
