Background: Engaging families in postsurgical care is potentially beneficial for improving cancer patient outcomes and quality of care. The authors developed a family involvement program (FIP) and in this study, the authors aim to evaluate the impact of the FIP on family caregiver burden and well-being. Moreover, the authors aim to assess the fidelity of the program. Materials and methods: This is a preplanned subgroup analysis of a patient-preferred prospective cohort study that included family caregivers of patients who underwent major oncological surgery for gastrointestinal tumors. Only patient-nominated family caregivers could participate in the FIP. Caregivers received structured training in fundamental caregiving tasks from healthcare professionals and then actively participated in these tasks. Caregiver burden and well-being were measured four times (at hospital admission, at hospital discharge, and at 1 and 3 months posthospital discharge) using the Caregiver Strain Index+ (CSI+) and the Care-related Quality of Life instrument (CarerQoL-7D). The fidelity of the FIP was assessed by recording completion of care activities. In addition, family caregivers were asked whether they would participate in the FIP again. Results: Most of the 152 family caregivers were female (77.6%), and their mean age was 61.3 years (SD=11.6). Median CSI+ scores ranged between -1 and 0 and remained below the cutoff point of experiencing burden. CarerQoL-7D results indicated no significant differences in family caregivers' well-being over time. Upon discharge, over 75% of the family caregivers stated that they would recommend the FIP to others. The highest compliance with all fundamental care activities was observed during postoperative days 2-4. Conclusion: The family caregivers of oncological surgical patients who participated in the FIP exhibited acceptable levels of caregiver burden and well-being. These findings suggest that the FIP is a valuable intervention to equip family caregivers with the skills to navigate the uncertain period following a patient's hospital discharge.
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BACKGROUND: Healthcare professionals in the hospital setting frequently assume primary caregiving responsibilities, which often leads family members to perceive this as standard practice during hospitalization. This dynamic may create a gap between actual and desired levels of family involvement. The aim of this study is to explore the opinions of families about their involvement in care during the hospitalization of a relative.METHODS: A sequential explanatory mixed-method study design was used, where quantitative data collection is followed by qualitative data collection for a deeper understanding of the quantitative findings. Data were collected between November 2023 and April 2024 across 15 wards in a university hospital in the north of the Netherlands. 153 family members of hospitalized patients completed the adapted Families' Importance in Nursing Care-Families' Opinions questionnaire, providing valuable quantitative data. Twenty-three of these family members were subsequently interviewed to gather qualitative insights. Data were analyzed sequentially, with the quantitative results guiding qualitative data collection. The two types of data were integrated to draw comprehensive conclusions about the significance of family involvement during hospitalization. The study adhered to the guidelines of the Good Reporting of A Mixed Method Study (GRAMMS).RESULTS: The questionnaire scores indicate a high willingness for involvement in care during hospitalization. Subsequent in-depth interviews led to the development of a model demonstrating that this involvement is sequentially related to the themes of acknowledgement, alignment, and collaboration.CONCLUSIONS: Family members expressed a need to be acknowledged by healthcare professionals as partners in care. Role agreements and information sharing during hospital care should be aligned to achieve effective collaboration between family members and healthcare professionals.
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.
