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.
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AbstractIntroduction: Involvement of family members in shared decision-making (SDM) processes for older cancer patients has become a topic of increasing interest but can be challenging for physicians. Yet, there is a need to understand the unique features of family involvement in SDM.Objectives: The aim of this study was to identify how and to what extent family members of older patients with cancer, together with patients and physicians, are involved in triadic decision-making processes in clinical practice.Methods: Qualitative observations of 25 consultations between physicians (n=10), patients ≥ 70 years (n=25), and family members (n=30) at the oncology outpatient clinic. Consultations were audiotaped and transcribed. The OPTIONMCC tool was used to evaluate the SDM process. Data analysis followed a thematic deductive approach using Atlas-ti.Results: Patients showed greater participation in the SDM process than family members. Family members' involvement in SDM varied from no involvement to active involvement. Their participation can be characterized by several key factors, including emphasizing the patient's values and goals of care, asking questions about various treatment options, offering assistance in the decision-making process, and providing clarification and organization of the overall care process. Observed physicians' SDM skills were at a low or moderate level. Physicians kept their focus on patients and were responsive to family members but did not actively involve them in SDM.Conclusion: Family members of older patients with cancer showed varying levels of involvement in the SDM process, while physicians were observed to not actively involve them. To increase family involvement in SDM in a way that is beneficial for all parties involved we recommend including patient and family-oriented strategies in SDM training for physicians.
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Many older patients with cancer depend on their family members for care and support and involve their family members in treatment decision-making in different stages of the cancer trajectory. Although family involvement is advocated in person-centered care, little is known about family involvement in decision-making specifically for older patients, and evidence-based strategies are scarce. The aim of this scoping review is to provide deeper understanding of factors influencing family involvement in treatment decision-making for older patients with cancer. Four databases were searched for quantitative-, qualitative- and mixed-method empirical studies describing factors influencing family involvement in treatment decision-making for older patients with cancer: PubMed, EMBASE, CINAHL and PsycINFO. Three independent researchers reviewed the papers for eligibility and quality and contributed to the data extraction and analysis. Twenty-seven papers were included, sixteen quantitative studies, nine qualitative studies and two mixed-method studies. Five categories of factors influencing family involvement emerged: 1) patient characteristics, 2) family member characteristics, 3) family system characteristics, 4) physician’s role and 5) cultural influences. These factors affect the level of family control in decision-making, treatment choice, decision agreement, and levels of stress and coping strategies of patients and family members. This review reveals a complex interplay of factors influencing family involvement in treatment decision-making for older patients with cancer that is rooted in characteristics of the family system. The findings underscore the need for development and implementation of evidence-based strategies for family involvement in treatment decision-making as part of patient-centered care for older patients with cancer.
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