AIMS: To assess the interplay between hope and the information provided by health care professionals. BACKGROUND: Earlier research learned that hope is crucial for relatives of traumatic coma patients. Also it has been reported that the need for information is extremely important for relatives of critically ill patients. DESIGN: A qualitative approach according to the 'grounded theory' method with constant comparison was used. METHOD: We held 24 in-depth interviews with 22 family members of 16 patients with traumatic coma. Data processing and data analysis took place in a cyclic process wherein the induction of themes was alternated by confrontation with new material. RESULTS: Family members of traumatic coma patients want information that is as accurate as possible, provided by doctors and nurses in an understandable manner and leaving room for hope. At first, family members can do no more than passively absorb the information they receive. After some time, they actively start working with information and learn what to build their hope on. In this way, concrete hope evolves and seems to be strongly determined by information. Information that is more positive than warranted is not appreciated at all. It leads to false hope and once its real nature becomes apparent, to increased distress and loss of trust in the professionals. CONCLUSION: The process of hope is crucial in coping with traumatic coma and information can facilitate this process. RELEVANCE TO CLINICAL PRACTICE: If professionals, especially nurses, keep the process in mind that family members go through in handling information, they can not only facilitate this process but also help them to establish realistic hope.
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BACKGROUND: Family members of patients treated with Extracorporeal Membrane Oxygenation (ECMO) during an Intensive Care Unit (ICU) stay are at risk of developing symptoms of anxiety, depression and Post-Traumatic Stress Disorder (PTSD). Coping strategies used by family members may play an important role in the severity of some of these symptoms.OBJECTIVES: The primary aim of this study was to describe coping strategies used by family members of ECMO-treated patients during ICU admission and recovery period. The secondary aim was to explore the course of the symptoms anxiety, depression, PTSD, and Health Related Quality Of Life (HRQOL) over time.METHODS: In this single-center prospective longitudinal study, validated questionnaires were used to measure coping strategies, symptoms of anxiety, depression and PTSD, and HRQOL in family members of ECMO-treated patients directly after the start of ECMO and at one and six months after the start of ECMO.RESULTS: Family members (n = 26) mainly used problem-focused coping strategies. Symptoms of anxiety appeared to be most present during treatment but decreased over time, as did symptoms of depression and PTSD. HRQOL was severely affected, especially in the mental domain, and did not improve over time.CONCLUSION: In family members of ECMO-treated patients, problem-focused coping mechanisms were most prominent. Psychological functioning was impaired on admission but improved over time, although a mild reaction to stress remained.
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BACKGROUND: The COVID-19 pandemic has resulted in a major influx of intensive care unit (ICU) admissions. Currently, there is limited knowledge on the long-term outcomes of COVID-19 ICU-survivors and the impact on family members. This study aimed to gain an insight into the long-term physical, social and psychological functioning of COVID-19 ICU-survivors and their family members at three- and six-months following ICU discharge.METHODS: A single-center, prospective cohort study was conducted among COVID-19 ICU-survivors and their family members. Participants received questionnaires at three and six months after ICU discharge. Physical functioning was evaluated using the MOS Short-Form General Health Survey, Clinical Frailty Scale and spirometry tests. Social functioning was determined using the McMaster Family Assessment Device and return to work. Psychological functioning was assessed using the Hospital Anxiety and Depression Scale.RESULTS: Sixty COVID-19 ICU-survivors and 78 family members participated in this study. Physical functioning was impaired in ICU-survivors as reflected by a score of 33.3 (IQR 16.7-66.7) and 50 (IQR 16.7-83.3) out of 100 at 3- and 6-month follow-ups, respectively. Ninety percent of ICU-survivors reported persistent symptoms after 6 months. Social functioning was impaired since 90% of COVID-19 ICU-survivors had not reached their pre-ICU work level 6 months after ICU-discharge. Psychological functioning was unaffected in COVID-19 ICU-survivors. Family members experienced worse work status in 35% and 34% of cases, including a decrease in work rate among 18.3% and 7.4% of cases at 3- and 6-months post ICU-discharge, respectively. Psychologically, 63% of family members reported ongoing impaired well-being due to the COVID-19-related mandatory physical distance from their relatives.CONCLUSION: COVID-19 ICU-survivors suffer from a prolonged disease burden, which is prominent in physical and social functioning, work status and persisting symptoms among 90% of patients. Family members reported a reduction in return to work and impaired well-being. Further research is needed to extend the follow-up period and study the effects of standardized rehabilitation in COVID-19 patients and their family members.
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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.
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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: Medical consultations with older patients often include triadic conversations and decision-making processes involving physicians, patients, and family members. The presence of family members may change the communication dynamics and therefore increase the complexity of the consultation and decision-making process. Objective: This study explored associations between physicians' shared decision-making (SDM) behaviour and patients' and family members' participation in the decision-making process. Methods: Using an observational design, we analysed 95 recorded consultations between medical specialists, patients aged ≥65 years, and accompanying family members at a Dutch hospital. The OPTIONMCC was used to assess the physicians' SDM behaviour and patients' and family members' levels of involvement in SDM. Results: We found a strong positive correlation between physicians' behaviour and patients' and family members' participation in SDM (0.68 and 0.64, respectively, p < .01). Family members were more involved in SDM for patients aged 80 and older. Conclusion: While not asserting causation, our study suggests physicians potentially play a facilitating role in shaping the SDM process together with proactive contributions from patients and family members. Innovation: The results offer new insights into triadic SDM and provide suggestions for refining the OPTIONMCC. Further research is recommended into participants' mutual directional influences in triadic SDM.
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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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Introduction: 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. Objective: 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 they use to ensure positive family involvement. Methods: Semi-structured interviews were conducted with 13 surgical oncologists and 13 oncology nurses in two Dutch hospitals. 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. 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.Conclusion: Surgeons and nurses perceive involvement of adult in treatment decision making as beneficial. However, family involvement can trigger specific complexities and challenges in treatment decision conversations that call for practical patient and family-centered strategies.
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ENGLISH: A vast and growing body of research has shown that crime tends to run in families. However, previous studies focused only on traditional crimes and research on familial risk factors for cyber offending is very scarce. To address this gap in the literature, the present study examines the criminal behavior of the family members of a sample of cyber offenders prosecuted in the Netherlands. The sample consists of 979 cyber offenders prosecuted for computer trespassing between 2001 and 2018, and two matched groups of 979 traditional offenders and 979 non-offenders. Judicial information and kinship data from Dutch Statistics were used to measure criminal behavior among family members. Both traditional offenders and cyber offenders were found to be more likely to have criminal fathers, mothers, and siblings than non-offenders. Additional analyses, however, showed different patterns between cyber offenders who were only prosecuted for cyber offenses and those who also committed traditional crimes. While the former group of cyber offenders were similar to non-offenders in terms of family offending, the latter group of cyber offenders were more similar to traditional offenders. Overall, these results suggest that the traditional mechanisms of intergenerational transmission of crime can only partially explain cybercrime involvement. NEDERLANDS: Uit een groot en groeiend aantal onderzoeken blijkt dat criminaliteit vaak in families voorkomt. Eerdere studies richtten zich echter alleen op traditionele misdrijven en onderzoek naar familiaire risicofactoren voor cybercriminaliteit is zeer schaars. Om deze leemte in de literatuur op te vullen, onderzoekt deze studie het criminele gedrag van familieleden van een steekproef van cyberdelinquenten die in Nederland worden vervolgd. De steekproef bestaat uit 979 cyberdelinquenten die tussen 2001 en 2018 zijn vervolgd voor computervredebreuk, en twee gematchte groepen van 979 traditionele delinquenten en 979 niet-delinquenten. Justitiële informatie en verwantschapsgegevens van het Centraal Bureau voor de Statistiek werden gebruikt om crimineel gedrag onder familieleden te meten. Zowel traditionele daders als cybercriminelen bleken vaker criminele vaders, moeders en broers en zussen te hebben dan niet-daders. Aanvullende analyses lieten echter verschillende patronen zien tussen cyberdelinquenten die alleen werden vervolgd voor cyberdelicten en degenen die ook traditionele delicten pleegden. Terwijl de eerste groep cyberdelinquenten vergelijkbaar was met niet-delinquenten wat betreft gezinsdelinquentie, leek de tweede groep cyberdelinquenten meer op traditionele delinquenten. In het algemeen suggereren deze resultaten dat de traditionele mechanismen van intergenerationele overdracht van criminaliteit de betrokkenheid bij cybercriminaliteit slechts gedeeltelijk kunnen verklaren.
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INTRODUCTION: There is a growing interest in the involvement of family members of older patients with cancer in decision-making processes. The aim of this study is to identify how and to what extent family members, together with patients and physicians, are involved in triadic decision-making processes in clinical practice.MATERIALS AND METHODS: This study was conducted using an exploratory observational design. The Observer Patient Involvement Scale for patients with Multiple Chronicle Conditions (OPTION MCC) was used to assess the interaction in triadic decision-making between patients, family members, and physicians. Physicians' behaviour was scored on a Likert-scale ranging from 0 (not observed) to 4 (executed to a high standard), while the behaviour of patients and their family members was scored on a scale from 0 (no or minimum participation) to 2 (active participation). Atlas.ti software was used to facilitate coding, and the SPSS statistical analysis platform was used to explore correlations between the shared decision-making (SDM) skills of the physician and the participation of patients and their family members. RESULTS: In total, ten physicians performed 25 consultations with older patients and 30 family members. Patients showed higher levels of participation in the SDM process than family members (OPTION MCC mean scores 0.96 vs 0.61). Physicians' SDM skills were observed at a low or moderate skill level (OPTION MCC mean score 1.81). Exploratory correlation analysis showed that higher physician scores were related to higher levels of both patients' and family members' involvement in the decision-making process. The level of family members' involvement in SDM varied from no involvement at all to active involvement. Qualitative analysis of family involvement revealed that relatives are likely to: emphasize patients' values and goals of care; inquire about different treatment options; assist in the deliberation process; and ask for clarification of the further medical process. Physicians showed responsive behaviour towards family members but seldom actively involved them in the SDM process. DISCUSSION: The study findings suggest that there is a need to include strategies to facilitate family involvement in current SDM models for older patients with cancer. Healthcare professionals in geriatric oncology might benefit from additional training covering family dynamics and managing challenging situations.
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