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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Background: The outbreak of the COVID-19 pandemic influenced family-centred care dramatically due to restricting visiting policies. In this new situation, nurses were challenged to develop new approaches to involve family members in patient care. A better understanding of these changes and the experiences of nurses is essential to make an adaptation of procedures, and to secure a family-centred approach in care as much as possible. Objectives: The aim of this study was to investigate how family involvement had taken place, and to explore the experiences of nurses with family involvement during the COVID-19 outbreak. In addition, we aimed to formulate recommendations for the involvement of family. Methods: We conducted a qualitative study using patient record review and focus-group interviews between April and July 2020. We reviewed records of patients with confirmed COVID-19, who were admitted to the COVID-19 wards at two affiliated university hospitals in the Netherlands. All records were searched for notations referring to family involvement. In two focus-groups, nurses who worked at the COVID-19 wards were invited to share their experiences. The Rigorous and Accelerated Data Reduction (RADaR) method was used to collect, reduce and analyse the data. Results: In total, 189 patient records were reviewed and nine nurses participated in the focus-group meetings. Patient records revealed infrequent and often unstructured communication with focus on physical condition. Nurses confirmed that communication with family was far less than before and that the physical condition of the patient was predominant. The involvement of family in care was limited to practicalities, although more involvement was described in end-of-life situations. Nurses experienced moral distress due to the visiting restrictions, though some acknowledged that they had experienced the direct patient care so intense and burdensome, that family contact simply felt too much. Conclusion: The communication with and involvement of family in hospital care changed enormously during the COVID-19 outbreak. Based on the identified themes, we formulated recommendations that may be helpful for family-centered care in hospitals during periods of restricted visiting policy.
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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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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: Involvement of families in physiotherapy-related tasks of critically ill patients could be beneficial for both patients and their family. Before designing an intervention regarding family participation in the physiotherapy-related care of critically ill patients, there is a need to investigate the opinions of critically ill patients, their family and staff members in detail. Objective: Exploring the perceptions of critically ill patients, their family and staff members regarding family participation in physiotherapy-related tasks of critically ill patients and the future intervention. Methods: A multicenter study with a qualitative design is presented. Semistructured interviews were conducted with critically ill patients, family and intensive care staff members, until theoretical saturation was reached. The conventional content method was used for data analyses. Results: Altogether 18 interviews were conducted between May 2019 and February 2020. In total, 22 participants were interviewed: four patients, five family members, and 13 ICU staff members. Six themes emerged: 1) prerequisites for family participation (e.g., permission and capability); 2) timing and interactive aspects of engaging family (e.g., communication); 3) eligibility of patients and family (e.g., first-degree relatives and spouses, and long stay patients); 4) suitability of physiotherapyrelated tasks for family (e.g., passive, active and breathing exercises); 5) expected effects (e.g., physical recovery and psychological wellbeing); and 6) barriers and facilitators, which may affect the feasibility (e.g., safety, privacy, and responsibility). Conclusion: Patients, family members and staff members supported the idea of increased family participation in physiotherapy-related tasks and suggested components of an intervention. These findings are necessary to further design and investigate family participation in physiotherapyrelated tasks.
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Background: There is a lack of evidence regarding the relationship between family involvement and outcomes in gastrointestinal oncology patients after surgery. To evaluate the effect of a family involvement program for patients undergoing oncologic gastrointestinal surgery on unplanned readmissions within 30 days after surgery. Methods: A multicenter patient-preference cohort study compared 2 groups: patients who participated in the family involvement program versus usual care. The program comprised involvement of family caregivers in care and training of health care professionals in family-centered care. Multivariable regression analyses were used to evaluate the effect of the FIP on the number of unplanned readmissions up to 30 days after surgery. Secondary outcomes included complications sensitive to fundamental care activities, emergency department visits, intensive care unit admissions, hospital length of stay, and the need for professional home care after discharge. Results: Of the 301 patients included, 152 chose the family involvement program, and 149 chose usual care. Postoperative readmissions occurred in 25 (16.4%) patients in the family involvement program group, and 15 (10.1%) in the usual care group (P = .11). A significant reduction of 16.2% was observed in the need for professional home care after discharge in the family involvement program group (P < .01). No significant differences were found between the 2 groups in the other secondary outcomes. Conclusion: The family involvement program did not reduce the number of unplanned readmissions, but it led to a substantial reduction in-home care, which suggests an economic benefit from a societal perspective. Implementation of the family involvement program should, therefore, be considered in clinical practice.
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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.
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In this article we provide the results of a review study on parental involvement in children’s education with a focus on the specific position of illiterate parents. Research results indicate that parental involvement in children’s education matters. It matters for their achievement, motivation and wellbeing at school. Over the last decade, parents and teachers are supposed to collaborate more andmore as partners in education. To establish these partnerships, the primacy is placed on teachers and schools as they are the professional partners. The results of our review study reveal different good practices to enhance parental involvement: from parent and teacher training programs to reorganization of the school structure and family interventions. When illiterate parents want to be involved in their children’s education, they are faced with many difficulties. Remarkably, the research findings on the involvement of illiterate parents appeared to be limited, in contrast with the resultsof our literature search on the topic of parental involvement in children’s education in general, which was very extensive. However, we have found some good practices to foster the involvement of illiterateparents in their children’s education.
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BACKGROUND: 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, strategies for involving family members are scarce. Furthermore, literature about shared decision-making pays little attention to family involvement or to the impact that family relations have on the decision process. The purpose of this study was to explore how surgeons and nurses perceive the involvement of adult children of older patients with cancer in treatment decision-making. Subsequently, it identified strategies to ensure family involvement in the decision-making process, used in clinical practice.METHODS: Qualitative open in-depth interviews were conducted with 13 surgeons and 13 nurses working in a university or general hospital. Qualitative content analysis was conducted according to the steps of thematic analysis.RESULTS: Both nurses and surgeons indicated that adult children's involvement in decision-making about treatment increases when patients become frail. They mentioned several characteristics of adult children's behaviour during the decision-making process. Most of these characteristics are beneficial, but they also can be challenging. The distinct nature of adult children's involvement can help older patients with cancer reach better-informed treatment decisions. Health professionals reported six strategies to support positive family involvement in decision-making about treatment.CONCLUSION: Adult children may facilitate a process of shared decision-making and help patients reach well-informed treatment decisions. Health professionals' strategies deliberately support positive family involvement.
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