Background: Optimizing transitional care by practicing family-centered care might reduce unplanned events for patients who undergo major abdominal cancer surgery. However, it remains unknown whether involving family caregivers in patients’ healthcare also has negative consequences for patient safety. This study assessed the safety of family involvement in patients’ healthcare by examining the cause of unplanned events in patients who participated in a family involvement program (FIP) after major abdominal cancer surgery. Methods: This is a secondary analysis focusing on the intervention group of a prospective cohort study conducted in the Netherlands. Data were collected from April 2019 to May 2022. Participants in the intervention group were patients who engaged in a FIP. Unplanned events were analyzed, and root causes were identified using the medical version of a prevention- and recovery-information system for monitoring and analysis (PRISMA) that analyses unintended events in healthcare. Unplanned events were compared between patients who received care from family caregivers and patients who received professional at-home care after discharge. A Mann-Whitney U test was used to analyze data. Results: Of the 152 FIP participants, 68 experienced an unplanned event and were included. 112 unplanned events occurred with 145 root causes since some unplanned events had several root causes. Most root causes of unplanned events were patient-related factors (n = 109, 75%), such as patient characteristics and disease-related factors. No root causes due to inadequate healthcare from the family caregiver were identified. Unplanned events did not differ statistically (interquartile range 1–2) (p = 0.35) between patients who received care from trained family caregivers and those who received professional at-home care after discharge. Conclusion: Based on the insights from the root-cause analysis in this prospective multicenter study, it appears that unplanned emergency room visits and hospital readmissions are not related to the active involvement of family caregivers in surgical follow-up care. Moreover, surgical follow-up care by trained family caregivers during hospitalization was not associated with increased rates of unplanned adverse events. Hence, the concept of active family involvement by proficiently trained family caregivers in postoperative care appears safe and feasible for patients undergoing major abdominal surgery.
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ObjectiveWe designed a Patient and Family Participation Education Program (PFEP) with the aim of fostering a positive attitude and enhancing the competencies of hospital nurses required for effective patient and family participation in care.MethodsIn a Dutch university hospital, we conducted a before-after study. The PFEP comprising three courses: family conversation, supporting shared decision-making, and health literacy. We assessed nursing attitudes using the FINC-NA questionnaire and competencies with a separate questionnaire before and three months after the program. Changes in attitudes and competencies were analyzed using regression analysis.ResultsTwenty-two nurses participated in the education group, and 58 participated as controls.After three months, the change scores for the education group were statistically significantly higher on the total attitude score (FINC-NA) compared to the control group. Moreover, in six out of twelve competencies, the education group demonstrated significantly higher scores than the control group.ConclusionThe educational program appeared effective in promoting nurses' attitudes and feelings of competencies towards patient and family-centered care.InnovationA blended education program focusing on patient and family has potential value for implementation in hospital care settings, especially for hospitals aiming to cultivate a more patient- and family-centered environment.
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This thesis focuses on the effectiveness of a family-centered approach (in Dutch “DMOprotocol”, further referred to as the family-centered approach), designed for monitoring and enhancing children’s social-emotional development in Preventive Child Healthcare (PCH). The effectiveness study took place at a Dutch PCH organization (Icare JGZ). In a quasi-experimental design, regions in which the family-centered approach had already been implemented (northern and southeastern part of Drenthe) were compared to regions in which care-as-usual had been maintained (northern part of Overijssel). The aim was to assess the added value of the family-centered approach from different perspectives. Therefore several research questions were answered in analyses that arereported in different chapters of this thesis.
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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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The aim of this study was to describe patients' experiences of, and preferences for, surgical wound care discharge education and how these experiences predicted their ability to self-manage their surgical wounds. A telephone survey of 270 surgical patients was conducted across two hospitals two weeks after discharge. Patients preferred verbal (n = 255, 94.8%) and written surgical wound education (n = 178, 66.2%) from medical (n = 229, 85.4%) and nursing staff (n = 211, 78.7%) at discharge. The most frequent education content that patients received was information about follow-up appointments (n = 242, 89.6%) and who to contact in the community with wound care concerns (n = 233, 86.6%). Using logistic regression, patients who perceived that they participated in surgical wound care decisions were 6.5 times more likely to state that they were able to manage their wounds at home. Also, patients who agreed that medical and/or nursing staff discussed wound pain management were 3.1 times more likely to report being able to manage their surgical wounds at home. Only 40% (107/270) of patients actively participated in wound-related decision-making during discharge education. These results uncovered patient preferences, which could be used to optimise discharge education practices. Embedding patient participation into clinical workflows may enhance patients' self-management practices once home.
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BACKGROUND: Family engagement in care for adult inpatients may improve shared decision making in the hospital and the competence and preparedness of informal caregivers to take over the care at home. An important strategy to involve family members in hospital care processes is to include them in (ward) rounds, also called 'family-centered rounds'(FCRs).OBJECTIVES: Summarize the evidence regarding the added value of FCRs from the perspectives of patients, family, and healthcare professionals.METHODS: A review protocol was registered a priori with PROSPERO (number CRD42022320915). The electronic databases PubMed, CINAHL, and PsycInfo were searched for English-written systematic reviews with a focus on FCRs. The results and methods were presented in line with the PRISMA guidelines, and the methodological quality of the included reviews was assessed using the adapted version of the AMSTAR tool.RESULTS: Of the 207 initial records, four systematic reviews were identified covering a total of 67 single studies, mainly performed in critical and pediatric care. Added values of FCR were described at review level, with references to single studies. All four systematic reviews reported an improvement in satisfaction among patients, family, and healthcare professionals, whereby satisfaction is linked to improved communication and interaction, improved situational understanding, inclusion of family in the decision-making process, and improved relationships within the care situation.CONCLUSION: Although only limited research has been conducted on the value of FCRs in the adult non-critical care setting, and despite the existence of a variety of outcome measures, the results available from the pediatric and acute care setting are positive. The findings of the sole study in an adult non-critical patient population are in line with these results. Further research in adult non-critical care is required to verify its effects in this setting.
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Background: Patient Reported Experience Measures are promoted to be used as an integrated measurement approach in which outcomes are used to improve individual care (micro level), organisational quality (meso level) and external justification (macro level). However, a deeper understanding of implementation issues of these measures is necessary. The narrative Patient Reported Experience Measure “Dit vind ik ervan!” (English “How I feel about it!”) is used in the Dutch disability care sector, but insight into its’ current use is lacking. We aimed to provide insight into experiences with the implementation and current ways of working with “Dit vind ik ervan!” as an integrated measurement strategy. A descriptive qualitative study was done at a disability care organisation. Data were collected by nine documentations, seven observations, 11 interviews and three focus groups. We applied deductive content analysis using the Consolidated Framework for Implementation Research as a framework. Results: Our analysis revealed facilitators and barriers for the implementation of “Dit vind ik ervan!”. We found most barriers at the micro level. Professionals and clients appreciated the measure’s narrative approach, but struggled to perform it with communication vulnerable clients. Some clients, professionals and team leaders were unfamiliar with the measure’s aim and benefit. On the meso level, implementation was done top-down, and the management’s vision using the measure as an integrated measurement approach was insufficiently shared throughout the organisation. Conclusions: Our study shows that Patient Reported Experience Measures have the potential to be used as an integrated measurement strategy. Yet, we found barriers at the micro level, which might have influenced using the measurement outcomes at the meso and macro level. Tailored implementation strategies, mostly focusing on designing and preparing the implementation on themicro level, need to be developed in co-creation with all stakeholders.
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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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Background:Postoperative complications and readmissions to hospital are factors known to negatively influence the short- and long-term quality of life of patients with gastrointestinal cancer. Active family involvement in activities, such as fundamental care activities, has the potential to improve the quality of health care. However, there is a lack of evidence regarding the relationship between active family involvement and outcomes in patients with gastrointestinal cancer after surgery.Objective:This protocol aims to evaluate the effect of a family involvement program (FIP) on unplanned readmissions of adult patients undergoing surgery for malignant gastrointestinal tumors. Furthermore, the study aims to evaluate the effect of the FIP on family caregiver (FC) burden and their well-being and the fidelity of the FIP.Methods:This cohort study will be conducted in 2 academic hospitals in the Netherlands. The FIP will be offered to adult patients and their FCs. Patients are scheduled for oncological gastrointestinal surgery and have an expected hospital stay of at least 5 days after surgery. FCs must be willing to participate in fundamental care activities during hospitalization and after discharge. Consenting patients and their families will choose to either participate in the FIP or be included in the usual care group. According to the power calculation, we will recruit 150 patients and families in the FIP group and 150 in the usual care group. The intervention group will receive the FIP that consists of information, shared goal setting, task-oriented training, participation in fundamental care, presence of FCs during ward rounds, and rooming-in for at least 8 hours a day. Patients in the comparison group will receive usual postoperative care. The primary outcome measure is the number of unplanned readmissions up to 30 days after surgery. Several secondary outcomes will be collected, that is, total number of complications (sensitive to fundamental care activities) at 30 and 90 days after surgery, emergency department visits, intensive care unit admissions up to 30 and 90 days after surgery, hospital length of stay, patients’ quality of life, and the amount of home care needed after discharge. FC outcomes are caregiver burden and well-being up to 90 days after participating in the FIP. To evaluate fidelity, we will check whether the FIP is executed as intended. Univariable regression and multivariable regression analyses will be conducted.Results:The first participant was enrolled in April 2019. The follow-up period of the last participant ended in May 2022. The study was funded by an unrestricted grant of the University hospital in 2018. We aim to publish the results in 2023.Conclusions:This study will provide evidence on outcomes from a FIP and will provide health care professionals practical tools for family involvement in the oncological surgical care setting.
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Background: Patient participation in goal setting is important to deliver client-centered care. In daily practice, however, patient involvement in goal setting is not optimal. Patient-specific instruments, such as the Patient Specific Complaints (PSC) instrument, can support the goal-setting process because patients can identify and rate their own problems. The aim of this study is to explore patients’ experiences with the feasibility of the PSC, in the physiotherapy goal setting. Method: We performed a qualitative study. Data were collected by observations of physiotherapy sessions (n=23) and through interviews with patients (n=23) with chronic conditions in physiotherapy practices. Data were analyzed using directed content analysis. Results: The PSC was used at different moments and in different ways. Two feasibility themes were analyzed. First was the perceived ambiguity with the process of administration: patients perceived a broad range of experiences, such as emotional and supportive, as well as feeling a type of uncomfortableness. The second was the perceived usefulness: patients found the PSC useful for themselves – to increase awareness and motivation and to inform the physiotherapist – as well as being useful for the physiotherapist – to determine appropriate treatment for their personal needs. Some patients did not perceive any usefulness and were not aware of any relation with their treatment. Patients with a more positive attitude toward questionnaires, patients with an active role, and health-literate patients appreciated the PSC and felt facilitated by it. Patients who lacked these attributes did not fully understand the PSC’s process or purpose and let the physiotherapist take the lead. Conclusion: The PSC is a feasible tool to support patient participation in the physiotherapy goal setting. However, in the daily use of the PSC, patients are not always fully involved and informed. Patients reported varied experiences related to their personal attributes and modes of administration. This means that the PSC cannot be used in the same way in every patient. It is perfectly suited to use in a dialogue manner, which makes it very suitable to improve goal setting within client-centered care.
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